Diabetes Connections with Stacey Simms Type 1 Diabetes
The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
info_outline
Tandem's Control IQ at One Year: "The Real-World Data is Even Better Than the Clinical Data"
01/19/2021
Tandem's Control IQ at One Year: "The Real-World Data is Even Better Than the Clinical Data"
It's been a year since Tandem Diabetes Care released their Control IQ software, hybrid closed loop technology to help increase time in range. What have they learned about how people are using the system? Molly McElwee Malloy, Manager of Clinical Outcomes at Tandem Diabetes Care, is back on the show to answer your questions and to talk about what's next in the Tandem pipeline. Our innovations segment: using your CGM to get more out of exercise and.. a new study for people with rare forms of diabetes.. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, it's been a year since Tandem diabetes released their Control IQ software, hybrid closed loop technology to help increase time it range.1 since that day, as we do around here. We've all been asking for changes. Tandem says they're listening, Molly McElwee Malloy 0:43 can it be more aggressive? Could it be less aggressive? Good, you know, do this or that I pick my targets. Could I put a timer on exercise? Could I do all that? We are looking at all of those things. I would say nothing's off the table right now. Stacey Simms 0:56 Molly McElwee Malloy, manager of political outcomes at Tandem is back to talk about possible changes to controlling q to answer your questions, and to look ahead at other tech in the Tandem pipeline In our innovations segment using your CGM to get more out of exercise, and a new study for people with rare forms of diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome back to another week of the show. I am so glad to have here. If you are just finding us if you are new to Diabetes Connections, welcome. We aim to educate and inspire about diabetes with a focus on people who use insulin, my son was diagnosed with type one right before he turned two back in 2006. My husband lives with type two diabetes, I don't have any type of diabetes, but I am the broadcaster in the family. And that is how you get the podcast. It's funny to look back on this year. Because not only did none of us have any idea what 2020 would really be like, but more to my point here, as I'm taping this on January 15. And planning to release on the 19th. This was a time when many of us in the community were just refreshing the Tandem page over and over again. Because Control IQ had been approved. And many of us had already talked to our endocrinologists about it and tried to get the prescriptions. And if you remember that time, especially on social media and some of the Tandem groups, it was a bit bananas. But we have been using Control IQ for a year. Now Benny got his set up at the very end of January, as I recall. And they are not a sponsor of the show. They do not pay me to say this. But it's been absolutely amazing for us, it has really made a big difference. And you know, I don't share numbers. I'm not all about the numbers and straight lines with him. But I do want him to be healthy. And I think we were doing great before but just back from the endo this time around about a week ago as you're listening now, his lowest A1C ever. And the time before that was his previous lowest A1C ever. And the best part is he's doing less work. And I am I swear I'm doing less nagging. If you ask him, he will tell you otherwise. But I promise you it's true. So I'm thrilled to talk about control IQ. I'm really excited that all of the pump companies are moving in this direction, it would be amazing for everyone to have access to this kind of technology. That is a discussion for another time. Probably Another little bit of personal news, Benny got his driver's license. I know I can't believe it either. Here in North Carolina, you get your permit. If you want at 15, you can actually take drivers at 14 and a half. But you get your permit at 15. And you can get your license at 16 right now, because of COVID. They are not even doing road tests. I know isn't enough bananas. But what happens is you get your basically your junior driver's license, you can't drive at night, which is what he would have been issued anyway, if he passed a road test. And they cannot move on to the next level the after nines until they get a road test. In fact, I believe what he has expired in six months without a road test. So he'll have to take one. He's a decent driver, you know how superstitious I am. So I'm not going to say more than that. But I'm confident we've got a whole system with diabetes we have we've had these discussions, and he's just so excited about it. And I'm really thrilled for him that this step has taken but as a parent, and for those of you who have known him since he was two, how did this even happen? Okay, we're gonna talk to Molly from Tandem in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen and almost everyone who takes insulin has experienced a low blood sugar you know, that can be scary, but a very low blood sugar. It can be really scary, and that's where Gvoke Hypopen comes in Gvoke is the first auto injector to treat very low blood sugar. Gvoke is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvokeglucagon.com slash risk. My guest this week is the manager of clinical outcomes at Tandem diabetes care. And she lives with type one, Molly McElroy is I am grateful to say a frequent guest. And if you're a longtime listener, you know, her career and her life has been shaped by the technology that is now control IQ. That's not really an exaggeration. She was one of the first to test out an artificial pancreas system. And she changed her career path because of it. And my first interview with Molly was in 2016, when type zero technology announced their partnership with Tandem, and I will link up the previous episodes, we've done a bunch with her all about this software, you can find those links, as always, in the episode, show notes, wherever you're listening, the app should have show notes. If it's difficult to find, just head over to Diabetes connections.com. And every episode now has a transcript and lots of links and notes to help you out. Please stay though, to the very end beyond the interview because there are a few questions Molly had to check on. She couldn't answer at the time. And they sent me that information. And I will give that to you later on in the show. Of course, as I said, there's a transcript so you can check it out that way as well. Molly, thank you so much for coming back on to talk to me a year ago, you and I spoke about Control IQ it had basically just been approved. And you were kind enough to jump on that in late December. So thanks for coming back on. Molly McElwee Malloy 6:26 Oh, you're welcome. I'm very excited to be back on this. Stacey Simms 6:29 Yeah, well, lots of lots of questions, of course, from listeners and from me. But let's just start by taking a moment to kind of reflect what's the last year been like for you guys at Tandem? Molly McElwee Malloy 6:39 You know, it's been really crazy great is the best way I could describe it. There's a lot of excitement for control IQ, and rightfully so. And there's a lot of the feedback via social media about people's experience. And it's been really, overwhelmingly positive. It's also been kind of emotional, because this has been a rough time for everybody, right? Like last eight months or so that we've been in. I've been calling it seclusion. But it's, you know, everybody working from home. And that's been a really high stress situation, particularly for people with chronic disease, and myself included. So I've really been grateful that control like has been out and approved. And a useful tool during this time. Because just you know, stress influences glucose. And so it's been a big, huge help for a lot of people, particularly during this time. So it's been crazy great. And it's been busy. But sure, I would love to experience control, like you and all the interaction with healthcare providers in person. But it's been great just talking to people on the phone or on video or teams. And it's been really good that we've been really busy. Yeah, sure. All right. Stacey Simms 7:43 So what I'd like to do is take a look back, get some information from you about control IQ, and then kind of take a look forward because we know the product and the product line is evolving. So let's just start by asking you, what have you learned about control? IQ obviously had all the study information. But looking back at 2020? How are people using it? How is it working out? What is the data telling you, Molly McElwee Malloy 8:07 you know that this is the funniest thing, and this is not something that you can plan or you could guess but our real world data is better than our clinical trial data. And I'll say that again, because it's just, it feels a little crazy to say that out loud, because that's usually not the case, right? clinical trials are very well managed. And you know, there's protocols and everybody's sticking to stuff. But it turns out when you put this put control, like you in the real world where people are experiencing significant hyperglycemia, or even hypoglycemia, it does even better. So I mean, the clinical trial population was pretty well controlled, right? And we were still able to improve on that. But when you put it into the real world where people are doing, you know, they're real people, they're doing all kinds of real things, and we're able to get even better outcomes. It's surprising. It's awesome. It's a really cool experience, and definitely unexpected. Stacey Simms 8:59 Yeah. So let's dig into that. Can you tell us in terms of I guess you're measuring things like time and range? Can you give us a little bit more information about what you mean by they did better? Molly McElwee Malloy 9:09 So for one, it's it's time and proven time and range, right. So in our pivotal trial, we had about 11% over baseline improvement on time and range from a very good well control group, which is awesome. But in real world, it seems to be closer to 13%. Sometimes a little bit better. We've got some results from D Q&A which is a third party vendor that does research and they're affiliated with Diatribe. And they did some survey results about time and range by insulin pump therapy and it's been really cool to have like a 33% getting 81 to 90% time and range 31% getting 71 to 80% of 11% getting 91 to 100% which is crazy. So you know all of that And it just is amazing because it really does. It whips up on the competition. But it also just shows that, you know, this works even better in the real world. Stacey Simms 10:08 Any idea why? I mean, are people using sleep mode? Are people figuring out different ways to use it better? I'm just curious what you think might be happening? Molly McElwee Malloy 10:19 Yeah, I don't think it's the using sleep, you know, 24, seven or something. I think using a sleep schedule has been very successful. But I think the reason for this is that largely, and not everybody was correcting aggressively, right. So while there are that subset on Facebook, or social media that are trying to get that, you know, super, super tight range, there are plenty of people who, between meals, we're not correcting, and now they're receiving those corrections. And there's some evidence that we were able to publish. And I think we showed an ADA, but that persons with type two diabetes are benefiting from this. And that's because they're getting the corrections between meals, which we don't typically ask people with type two diabetes to do that. So getting that tighter control is really, really helpful. And again, not everybody does that. Stacey Simms 11:11 Yeah, I have one of those people in my house, who not everybody does that. I mean, we I tease Benny all the time, and he knows that I I talk about him on the show like this, he will happily, let me say that Control IQ has helped him significantly because he often boluses after he eats or forgets to bolus or didn't correct between lunch and let's say, bedtime, even if he gave himself insulin for dinner. And it really has made that burden lighter. And it's certainly not perfect. I have friends whose kids are much more engaged with their diabetes, I guess is a way to say it where they, they will you know, they'll bolus every two to three hours, or they're looking at their watch every 20 minutes. But he's never been like this. And it's really improved his quality of life. Because I'm not, I'm not willing to make him do that. Molly McElwee Malloy 11:57 Well, and if you think about the long term, decrease the complications because of this going on in the background is sort of automating this. I mean, that's a huge improvement and quality of life. One of the things I'm really excited about is to watch this going forward to see how we can measure decrease long term complications from this, you know, the not just like seeming variability, but with those micro macrovascular complications. But this is long term complications from diabetes from having high blood sugars. And, you know, that's just something that we've never been able to really control for before. So this is going to be very cool to watch and see how it plays out. Stacey Simms 12:36 No doubt. All right. We've gotten a little bit inside baseball, but I think most people listen to the podcast will understand some of the shorthand, I'll try to explain as much as I can. But if there are things that we mentioned, that you are not understanding, I'm going to link up lots of stuff in the show notes. But one of those things is sleep mode. And I just want to take a second to talk about that. Because you and I, when we talked last year, you said that there were some people using sleep mode, which will adjust basal but will not give you boluses, they were using a 24 seven in the studies, you called them sleeping beauties. And there have been many, many people in the real world settings who use that we do not we actually don't laugh at me, we stopped using sleep mode for sleep. Because as great as it was working for Benny with what you called a seclusion, we found that he was eating at interesting hours, you know, 1am 3am I mean, he went full nocturnal for about a month there way back when I want to say like June or July. And so we turned off sleep mode because we needed that bolus power at weird times. So it's been really funny how you can kind of use the system in a way that works for you. But getting back to my question, what have you learned about sleep mode? Is there anything you can share with us? We'll get her answer to that question and what she can share in just a moment. But first Diabetes Connections is brought to you by Dario health and we first noticed Dario a couple of years ago at a conference. And then he thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports. Based on your activity. Find out more, go to my daurio.com forward slash Diabetes Connections. Now back to Molly answer my question - we were talking about what Tandem has learned about the use of sleep mode? Molly McElwee Malloy 14:44 Yeah, yeah, there's lots like I've learned I just want to share quickly that I've seen in looking at lots of reports with lots of health care providers that during what I've been calling seclusion or hibernation this this COVID time that people schedules are very, very different. They're eating at different times. And that sleep, as originally intended right is not what it looks like during this time. So there's a lot of people who have benefited from not using sleep when they're eating right through the night, or snacking, or staying up extra late or, like really altered schedules, right. So we've seen that some people have turned sleep off, and that's been successful for them. So sleep, what sleep is doing is it's based off of fasting metabolism. And it's using this 112 to 120 sort of target. And it's really, it's a really tight range. But it's doing this through modulating basal. And the reason it's only modulating basal and not giving corrections is because someone is sleeping, and they're not, we're not anticipating postprandial spikes, and we're not anticipating exercise or activity. And so it's really, really meant for when you are kind of static, and you are sleeping. Now, that said, Not everybody's sleeping normally, particularly during COVID. And so it doesn't always work that way. And then some people want to have sleep 24 seven, so that the basal is modulating, but that they're responsible for the corrections. And if you're willing to glance and see if you need a correction every two hours, that can work really well. But if you want to alleviate that burden, right, then, then sleep maybe isn't the best thing for you to use 24 seven, so it really depends on the user and the user's interaction. But the other thing I wanted to mention about sleep for users is that one of the things that we've noticed, and how people are using sleep is that if their schedule have has changed drastically with COVID, that they may need to reevaluate that sleep pattern as to what time it is. So for instance, if someone previously wasn't snacking at 10pm, and now they are starting sleep a little later may make sense because they may need an additional correction before going to that, you know, that's one circumstance I've seen a lot of. And another one is, there are some patients who can't go to bed with a positive IOB. And what I mean by that is, you know, going to bed with any insulin on board that is not related to carbohydrates, right, so for correction, and for them starting sleep sooner, and you know, obviously not eating right before bed, makes sense, because they're not getting any corrections before bed. So there's sort of really two very different types of insulin sensitivities, right, the person who's eating and then needs the additional correction, who may want to start sleep later. And then the person who isn't eating after dinner, and really doesn't want any additional corrections before they go to bed, starting it sooner. So I've also seen that very interestingly playing out in the public realm, and it's it's interesting to see how people are using it to make it work for them. Stacey Simms 17:44 Yeah. What about exercise mode? Have you learned anything about how...
/episode/index/show/diabetesconnections/id/17577662
info_outline
Rob Howe: First Thoughts On Medtronic's 770G (and a lot more!)
01/12/2021
Rob Howe: First Thoughts On Medtronic's 770G (and a lot more!)
The Medtronic 770G pump was released in the United States just a few weeks ago and Robe Howe is one of the first to use it. Rob shares his first impressions and tells us what he'd really like to see in pump technology. (Rob is a paid ambassador for Medtronic, but they did not clear or review his comments for this interview). Rob & Stacey spend a lot of this episode on other issues, talking about whether people with type 1 are "disabled" and what it means to use that word. Rob talks about achievement bias (and explains what that involves) and a lot more. We also find out about his fun modeling gig with Express and about his COVID-adjusted wedding in 2020. , including our in-depth discussion about the 770G and what else is on tap. In Tell Me Something Good – legislative action, a diabetes blog gets a shout out and a new tip makes a difference for a site location. And Stacey makes her predictions for 2021. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Tell me something good links: ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities. By Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Unknown Speaker 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, Rob Howe is one of the first people in the US to use the new Medtronic 770Gpump. We'll talk about that. But our conversation got a lot more personal, including a discussion about whether most people with diabetes consider themselves disabled and everything that goes along with using that word. Unknown Speaker 0:47 I want to say like I Rob Howe, professional athlete, the guy who's goes and speaks and is like, you can do whatever you want. I identify as disabled, I am disabled, I have a disability. That doesn't mean that I'm not going to wake up tomorrow. And if my blood sugar's high, I'm just gonna quit and be like, you know, sayonara team Stacey Simms 1:01 Rob is also a podcaster. And he turned a few questions around on me, we went a few places I wasn't expecting, including my hard “no” stance on Disney guest passes from years ago, and a lot more. And we do talk a lot about the 770G as well. In Tell me something good legislative action, a diabetes blog gets a shout out and a new tip makes a big difference for site location. Plus, at the very end of the show, I'm going to do my predictions for diabetes in 2021, technology, community, and more. Stacey Simms 1:32 This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome back to another week of the show. I am your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin, my son was diagnosed with Type 1 14 years ago, my husband lives with type two, I don't have any type of diabetes. I'm the broadcaster. And that is how you get the podcast. I released an episode on New Year's Day about the COVID vaccine. And we've had a big response to that the episode was about health care providers with type one who had received the very first batches some of the first people in the US to get that first of two COVID shots. But the response was mostly people wanting to know where they fall in the priority order for receiving it. Dr. Ponder Dr. Steven Ponder was in that episode. And he's an endocrinologist in Texas. He had been trying to get Texas to allow type one into the higher tier. But it looks like this is going to vary state to state, I would urge you to jump into our Facebook group. It's Diabetes Connections, the group and I'm just start a thread. Let's try to get everybody up to speed whatever state you're in, link up the health department look up a news story that you know of let us know what's happening where you live. Here in North Carolina, they're talking about chronic conditions for one of the phases but it's not clear if it's just type two with type one will be included. As Dr. Ponder said, How are they going to check? Right? Do we really want the people giving the vaccines to have to worry about you know, give me your paperwork or your type two type one. Where's your doctor's note? I mean, it's already so much less efficient than we all had hoped. I do think they are making good progress. As I'm taping this at the end of the first week of January. Here in North Carolina, where I live, they have announced that they will be using the National Guard to help out which I think is terrific. And as I mentioned with a husband who's got type two, with my 16 year old who has type one who is eligible for the vaccine, we are going to watch closely to see when it is our turn. But again, I'm hoping we can get a big Clearinghouse going in the Facebook group with information with sourced information about when and where the vaccine will be available, where you live. My talk with Rob Howe about Medtronic and this talk really did turn into something more. It's not a typical interview for the show. I think we'll get to that in just a moment. But first Diabetes Connections is brought to you by Dario. And one of the things that makes diabetes management difficult for us. It really kind of annoys me and Benny, it's not really the big picture stuff, right? It's all the little tasks adding up. Are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management and with visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to My Dario dot com forward slash Diabetes Connections. My guest this week has been on the show before with a very different focus. Rob Howe joined me two years ago to talk about so called Walmart insulin which he used for a while as kind of an experiment if you want to hear how it went. I will link up that episode from 2018. Just go to Diabetes connections.com click on this episode or the show notes wherever you're listening We have a pretty robust search on the website as well if you prefer to search it that way. Rob is the host of the podcast, diabetics doing things. He is a former Washington Generals player. That's right. He's the bad guy. He was on the bad guy team against the world-famous Harlem Globetrotters. And this year, Rob became a model in a very cool campaign for Express and he got married. So Rob has a lot going on. And we've talked about quite a bit of it here. There is also a video of this interview over on our YouTube channel on Diabetes Connections over on YouTube, if you prefer to watch it's kind of fun to be doing more video interviews, let me know what you think about that. In addition to the audio, Rob is a brand ambassador for Medtronic, and he started using their newest pump, the 770G in December, we talked about that, and then had a conversation about everything from the word disability to why I never got Benny, a guest assistance pass at Disney. In fact, I put my foot down and said no to what he calls achievement culture within the diabetes community. Always great to catch up with Rob how from diabetics doing things, podcasts, and so many other things in the diabetes community. You become the go to emcee, I see you all over the place at virtual events. Thanks for jumping on. It's great to talk to you again. Rob Howe 6:13 Yeah, thanks so much for having me. I've become what I call, and literally no one else says this except me. I'm the host with the most Insulet on board. So yeah. Stacey Simms 6:23 Oh, I'm gonna steal that the next time I introduce you, I'll make sure to say that please Rob Howe 6:26 Please do. Rob Howe 6:28 I love it. Well, Stacey Simms 6:30 listen, we've got a lot to talk about today, I want to start off by just jumping in because the latest thing for you really has been not a change of technology. You've been a Medtronic guy for a long time. But you've got the latest version of Medtronic pump. So tell me, when did you start using the 770? Rob Howe 6:49 Yeah, so I am very fortunate. I've worked with Medtronic for a long time. And I've been a patient of Medtronic for even longer. So today, as of recording, it's December 16. And I think I've been on the Medtronic 770Gnow since December 1, right around there. So it was in the first wave of of Medtronic, folks, employees Ambassador group to get access to the new pump. And it's exciting. I mean, I think for me, I've been on the 670 g now for almost three years. So you know, one of the criticisms of the new pump is that it really isn't very different, in turn from a technological standpoint, except it does have what we've always been very critical. And I mean, we as the diabetes, greater community of the 670 was that there was no Bluetooth connectivity to the phone. So I think this is Medtronic response to say, Hey, we hear you we got to have Bluetooth connectivity. And it's great. It actually, the app is super intuitive, the mini med mobile app and it has your basically your sensor glucose like you would normally see on your pump display, but it also has your 24 hour time and range. So just a quick little swipe, you can get over there and see your your 24 hour numbers, which is kind of nice, especially if you've had a really good day, you can see that you know those high time and range numbers. So it's exciting. And you know, I think for people who are, you know, really into the nitty gritty, it's also a new transmitter for the sensors. So it's still the Guardian three sensor, but a new GL three transmitter, which just has a few of the, you know, annoying, calibration tweaks that some people have, I think more vocal people than I have have, for sure lamented. So the the new transmitter is excellent and has fixed a lot of the challenges from the early days. Stacey Simms 8:26 We talked to Medtronic a couple of weeks ago, and I'll link up that episode in the show notes here to go through all of the features and what's coming next. But it really is interesting how so often these companies and it's not just Medtronic, I would kind of compare it to Omnipod dash right so they have one version, then they almost have a stop gap, which has some improvements but isn't the big shiny thing that we're waiting for you know the if you're looking at the technology so carefully, which will be the 780 which is out in Europe and will be out soon. But you know, I have heard a couple of people who have used Medtronic for a long time like you have say the phone stuff would be nice but I don't really need it. And now that you have it, you really look at it more i mean i don't have diabetes and so I'm trying to get myself from following Benny so often to not looking at it 24 seven, but was it really that different for you to kind of just look at your phone more than your pump Rob Howe 9:15 right now. I'm operating mostly from home so there isn't a you know, work meeting where I would feel better about pulling the phone out versus taking the pump out of my you know, pocket and I am an insulin pump in the pocket person so I don't wear like a holster or anything like that. And obviously Medtronic pumps have tubing, but I think it's nice to just be able to you know, you're on the phone all day all day. Anyway, I'll admit I spend a lot of time on my phone and being able to click over in the night. You know, I think that's been the time that I've used the app the most when you know in when I'm laying in bed, Stacey Simms 9:47 I think it's huge to have it on the phone. My kid is a pump in the pocket kid too. And he would never look at it. If he didn't have to. He's on the phone and it would you say maybe a couple of directions. He it would be really a big deal. If he suddenly lost that which he hasn't even had for that long, right? Well, anyway, you get used to. Rob Howe 10:04 Exactly. And I think that's where I think as consumers, and this is sort of my you know, before getting more and learning more about what goes into diabetes technology from a FDA approval standpoint, and all of the sort of hurdles that they have to go through, you know, I was sitting there streaming a movie on my iPhone on an airplane, and I'm like, wow, if I can stream a movie on my iPhone on an airplane, we for sure should be able to look at your blood sugar numbers on a phone. But I'm very much like Benny, I love the phone, very familiar with the interface, I use it quite a bit. So I think, you know, in terms of having that convenience, it's just so nice. It's kind of just takes away, you know, I think Medtronic has really done a nice job in past years. And also going forward of really relieving that mental burden and making diabetes integrated into your life. And this is definitely something that makes diabetes just more integrated in the way that you already use technology, the way that you're already on your phone. And I can get a push notification. Now my alert on high if I'm, you know, I got my high alert set at 160 get the alert on high, it pops up in my phone, just like a normal notification. And I can take care of it then. So yeah, I really love it. And I think that's kind of like what you said with Benny, you get really used to it really quickly of having it there and having those numbers all the time. So it's just nice to have it a little bit more integrated into our everyday life. Stacey Simms 11:15 Are you a big auto mode guy? Do you use the features of the 670. And now the 770 Rob Howe 11:21 I am I stay in auto mode. I'm a big auto mode guy. And I think the criticisms that I see of it online are fair, and it's not perfect. And I think Medtronic has done a great job of talking about those, you know, initially, this was like 1.0 of the hybrid closed loop systems, you know, so the algorithm is now in technology world is a little dated. But now, like you said, mentioned 780 coming soon, in the US. You know, the next version of that, I think is really exciting. But for me, I'm an auto mode guy. And I think the the biggest example I'll give for listeners is I love to play golf, I have a weekly golf round that I play on Sunday mornings, and I set it on auto mode. And before auto mode, I would go out and you know, my basil would be what it was and I have to set a temp target or attempt basil and you know, even before cgms I just basically have to have gummy bears stashed in my golf bag. And on auto mode. Thankfully, you know, I go in with no insulin on board in the morning if my morning starts off really smooth. And I can go through my entire round walking or in the cart and not have to worry about correcting and not have to worry about high so it's it's really nice. I love auto mode. That Blue Shield gives me a lot of confidence. Stacey Simms 12:25 That's awesome. It's funny though, looking at as we're recording this on video I can see into your house is basketball stuff all over the place. Now I know you're big basketball player. We've talked about that we talked in the past. So I'm interested that you brought up golf and rather than basketball. Rob Howe 12:38 Well, you know, I'm aging gracefully, Stacy. Like, you know, I think I still love playing basketball. And I think that's one thing that sentimentally I think there's been so many terrible things that have been taken from us because of COVID. And the thing that's been really eating away at my heart, and my soul is not being able to play basketball and because it's just not safe. And I think in Dallas, especially we have so many cases and I've been able to do some training in a gym, by myself wearing a mask, but I just missed competing and I think golf, you know, you're competing against yourself. So it kind of scratches my itch a little bit. So that's been my COVID pivot. Stacey Simms 13:14 That's awesome. I've been playing golf since I was 22. So I'll take you out sometime when we got Rob Howe 13:18 ready to say no more. I'm ready. Stacey Simms 13:22 You know, one of the things that really made me smile in the last couple of weeks was that terrific video you posted. Your it was it was announcing the partnership you have with Medtronic now but the video itself was so great. It was you know, if you haven't seen it, we'll link it up. How would you describe that like an athlete grabbing a sponsorship or getting recruited for a team? Rob Howe 13:42 Yeah, you know, I, I was stuck on this concept of signing day. And this announcement, this announcement kind of felt like that. And for me, you know, I've worked with Medtronic for a number of years as an ambassador as a consultant. And now kind of deepening that partnership into a more formal role. It just came to mind. And I thought, you know, this is true to who I am as an athlete, and seems like a fun way for and you know, that's a big part of what we're working on together is doing some outside the box, maybe not traditional Medtronic type announcements. And I would classify this as sort of in that realm. And I'm just very fortunate that my team and Medtronic is so on board with hearing sort of outside the box ideas. And so getting to produce this fake press conference about my signing day and learning that there are no Medtronic hats and having to get a Medtronic hat made for me to put on so now I have like the one on one of one Medtronic cat, which I love. It was really cool. And the response was great. And again, I just I'm glad that my team didn't roll their eyes at the pitch. They were like, Oh, yeah, this actually sounds great. We'll we'll do this. And I can only imagine as it went through legal what legal was thinking of just reviewing that video, so very fun. That is funny. I Stacey Simms 14:48 think I have one of the remaining animus shirts left in existence from what I used to do appearances for them. Rob Howe 14:54 Yeah, you gotta gotta save that merge. It's like it's retro. You know? Rob Howe 14:57 That's really funny. Stacey Simms 15:04 Right back to Robin just a moment, but first Diabetes Connections is brought to you by g Volk, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Jeeva kaipa pen comes in. It's the first auto injector to treat very low blood sugar. chivo hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give GMO correctly. I'm so glad to have something new, find out more, go to Diabetes connections.com and click on the G book logo. g Vox shouldn't be used in patients with pheochromocytoma or insulinoma visit g VOCA glucagon comm slash risk. Now back to rob, and he is talking about new technology that he's looking forward to. Rob Howe 15:52 I'm very excited about the integration of the phone as the software back end to the pumps and the devices. I think that adding diabetes technology to the Internet of Things is a huge milestone in healthcare. It's a huge milestone for people with diabetes. And it's just going to make this whole user experience more intuitive. I think the DIY loop community has shown how you know how powerful it can be when technology and people helping each other...
/episode/index/show/diabetesconnections/id/17500496
info_outline
Ypsomed: Bringing A New Insulin Pump (and Partnership) to the US
01/05/2021
Ypsomed: Bringing A New Insulin Pump (and Partnership) to the US
For the first time in several years, a new pump company is making a reach into the US market. Meet Ypsomed, the Swiss company teaming up with Lilly Diabetes. Their device, The YpsoPump, is available in Europe and Canada and has some unique features. But when it launches in the US, likely in 2022, it will only use Lilly insulin. That kind of proprietary design is unique and is raising eyebrows. Stacey talks to Simon Michel, Ypsomed's CEO (she'll talk to Lilly in a separate interview airing in a few weeks). In Innovations this week, what is an inverse diabetes vaccine? And could you be part of a trial for one? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health, manage your blood glucose levels increase your possibilities by Gvoke HypoPen, the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, my first interview with Ypsomed, the Swiss company teaming up with Lilly diabetes to bring a new pump to the US. A few features make YpsoPump unique, including their infusion sets which can help to cut back on insulin waste. Simon Michel 0:43 Yes it's terrible. It's throw away so much insulin all the time. But you can disconnect Of course from your body, you change a cartridge, you put it back on. And that's how you don't lose your insulin in the tube. Stacey Simms 0:54 That's Ypsomed CEO Simon Michel, we talked about more features and he answers questions about the partnership with Lilly in innovations. What is an inverse diabetes vaccine? And could you be part of a trial for one This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to our first full episode of 2021 Happy New Year. I'm so glad to have you here. Here we go. Another year of the podcast. My goodness, I'm your host, Stacey Simms. And as always, my goal here remains the same. We aim to educate and inspire about diabetes, with a focus on people who use insulin. any of that line sounds a little bit different if you're used to my intro where I talk exclusively about type one. But you know, more and more people with other types of diabetes are listening as the show is growing. And I think that's really important to acknowledge and to kind of dial back and see who we're serving here. My son was diagnosed with Type 1 14 years ago, my husband lives with type two diabetes, I do not have any type of diabetes. I'm the broadcaster in the family. This year on the show, I'm going to be focusing a lot on new technology, I think the delays that we saw in 2020, because of COVID are going to result in a lot more news than was originally planned or expected for 2021. You know, a lot of that innovation, a lot of those FDA submissions and approvals are getting stacked up, especially as we're looking at the second half of 2021 and into 2022. So you know, why not get ready. And you all have told me that you are very interested in episodes about technology. In this episode, we're gonna learn all about Ypsomed and their plans for the US market. I have an interview scheduled with their US partners, Lilly diabetes, to talk more in depth about the proprietary nature of this pump. You can only use Lilly insulin in it in the United States. That's interesting. We talk about that here in the interview. And then there are a bunch of questions that Ypsomed, really cannot answer that are more for Lilly. So I'm excited. I'll be talking to them soon. And just in the technology front, you're going to hear from the folks from Tandem. I've got a Medtronic interview, I'm excited to share with you. And as we look forward, of course, I will still be doing the personal stories interviews because I love those too. But please let me know if there are companies that you would like to hear from this year, and we will get them on and yes, Big Foot beta bionics. I'll be talking to everybody. Okay, Ypsomed in just a moment. But first Diabetes Connections has a new sponsor this year. Yes, I am so happy to welcome our newest partner Dario, I cannot wait to tell you all about them. You know, we first noticed Dario a couple of years ago at a conference and Benny thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports. Based on your activity. Find out more go to my daario.com forward slash Diabetes Connections. My guest this week is the CEO of Ypsomed. And if someone is a leading maker and developer of injection and infusion systems, pumps and pens around the world, and not just for diabetes, as you'll hear, they've been in the space for a very long time. But we're talking to them because I know I have listeners around the world and I appreciate you all so much and many of you may have experienced with this pump, but we are us centric and Ypsomed announced that it is partnering with Lilly diabetes to bring their pump to the US market. That announcement raised some eyebrows when it came out this fall because it will be the first pump in the US that will only be used With one type of insulin that can only be used with one type of insulin, and the US market is the only place where that will happen, this pump will be available in other countries that already is with different types of insulin. In other words, to be clear, you'll only be able to use Lilly insulin, such as human log in the US, if so, mid pump. Now, Ypsomed has been around for a long time before this, of course, many of you who've been in the space for a long time will recognize some of the technology names and the brands that come up here. I was really excited to talk to the CEO, of Ypsomed Simon Michel, for the very first time, he's been the CEO since 2014, at the company since 2006. And as you'll hear, he kind of grew up in the company. And here's our conversation. Thank you so much for spending some time with me. I'm excited to have you on the show and learn more about this. Thanks for being here. Simon Michel 5:53 Thank you, Stacey. I'm to give us a chance to talk and explain to what we're doing. Yeah. Stacey Simms 5:58 So let's just start with the basics if you could tell me about Ypsomed because we're really not that familiar with it here in the US. So if you wouldn't mind taking me through. Let's start with the the company history before we talk about the product because you are not a new company. You've been around for a while. Simon Michel 6:14 Yes, I'd love to Absolutely. Thank you. So my father in 1985. Around the time when MiniMed founded the first company, the first pump in in Europe Disetronic. Some of you might still remember the name. And we were quite a successful pump company. And we sold the pump company at the Disetronic to Rouche in 2003, Rouche is still a name in Europe, roughly 80,000 patients on the product. But as they didn't really innovate anymore, we decided to go back into pumping in 2010. Stacey Simms 6:44 When you went back into the pump business, what was the product at the time. Simon Michel 6:48 So we did two things in 2010, we signed with Insulet. We took over the DC distribution of the Omnipod in Europe. So basically build up the business for for Insulet. between 2010 and 2017. When we've given it back to them, and the parallel we have started to develop our own YpsoPump so in back into tubed pumping and thought what can we do better? What can we do better in terms of pumps? What is the community needing tomorrow? versus the old Disetronic pumps, what can we do better? Stacey Simms 7:17 What did you find that you could do better? We're going to talk about what the pump looks like and what it does, but big picture. Simon Michel 7:24 So when we look at Ypsomed today for a whole, we make roughly 400 million in revenue, we grow at roughly 15% per year. So quite a healthy company despite of COVID we still grow and we have two businesses and it's quite important to understand we do both pumps and pens. today. I'd say you're by far largest pen and auto injector manufacturers in the world. We close roughly seven out of 10 deals in the pen space that's pens for insulins, solostar pen some of you might know it's also many of the Chinese pens, pens all over the world but all the injectors for autoimmune diseases migraine Astham, osteoporosis, So this is our device business. And the other half of our company the other 12 million is where we are very invest in pen needles in blood glucose monitoring and heat pump systems. And this we sell in Europe very successfully now for the past years in Europe and our own brand was owned subsidiaries and own people. Stacey Simms 8:20 I'd like to know more about maybe we'll talk more about the pens a little bit later on. But when you started talking about the pumps and the systems that you started making in the 2000s I'd love to get back to what was lacking in the pump market. What did you think needed to change that you could do differently and better. Simon Michel 8:37 So a couple of things you know, I mean to the pump was very much medical device centric. It's a very strong technic focus site is designed by engineers, great engineers from America from Switzerland from Germany, great people that think about what features we can add. But in the end of the day, we use these devices daily we don't really want to know and hear and feel and about this device. So number one criteria for us was to make it small and light. Ypsopump is roughly 80 grams. I don't know what this is in American weight measures but it's a it's a roughly half the weight of a Medtronic pump. I mean that gives you some kind of feeling very important, you wear it all day. The other thing is simplicity. We don't need all those features. I mean if you look at the at the iPhone, some of these phones they have many features but they only show the features that you actually use. So really simple in a way what is really required you don't need eight basal menus, you need two or three. Some might use but the big, big majority of us don't need this vast opportunities. Stacey Simms 9:38 When I look at the the pump that we're talking about today. It does look tiny, it does look light and I did the I had to convert as well using my iPhone and that weight that 80 gram weight is point .176 pounds so very, very, very light. It looks like it's smaller, it looks like obviously it's lighter and doesn't have a touchscreen. It Looking at his buttons? Simon Michel 10:01 Yes, absolutely. So it has a touchscreen. It's used like your mobile phone, you have one button to turn it on and off. That's basically it. But other than that you have a regular touchscreen, which works at night perfectly. Stacey Simms 10:13 It's basically white on black. So it's a very good contrast that you see, is the pump controlled by phone? Is it controlled remotely? Or is it still used as the touchscreen? Simon Michel 10:22 So yes, very important. We are a compared to other manufacturers, we are a iPhone app centric company. So you everything you do we do from your phone. So you have your Dexcom data on your phone, you give your bolus from your phone, you do your basal rates from your phone, that's that's our strategy, we have the firmware updates that go via phone onto the pump and back. It's very much app centric. The reason is we can be much, much faster and adding elements and adding new functions, new features, you don't need to change the device, you know, you don't want to change device or every year, simply too costly. This is why we set it up that way. Stacey Simms 10:59 So that's a huge deal. Because here in the States we're all waiting for, you know bolus by phone, we're waiting for pump control which Tandem and maybe Omni pod will have and hopefully 2021. But just to be clear, you have that already. Simon Michel 11:12 So we have the apps and the whole app control features are now launched in q1 in all over Europe. Yes. All the other things integrate the integration. The data this is this is in place the apps is in the market. But the integration of this bolus button and the CGM together is Dexcom is launched now in the beginning of ‘21, q1. Stacey Simms 11:32 But let's talk I brought up the United States market. Let's talk about this partnership with Lilly, what is that partnership going to look like? And we can talk about consumers in a moment. But what will that partnership look like? For you all? Tell me about the system? What will the Lilly IP so mad Dexcom system look like when you bring it to the States? Simon Michel 11:52 Well, basically, for my relationship, it's simple Ypsomed innovates and be manufacturer really supports in innovation and does the marketing and sales it was for us crystal clear from the beginning Ypsomed is a European company, it would be very tough for us to enter the big US market. So if you're looking for a partner, and luckily Lilly was looking for a pump, so we found each other a year ago Ypsomed would be the is the comet actually registered a product to the FDA, the expected approval in the second half of 22. But it's a fully branded Ace pump. So Dexcom is integrated as a bolus calculator calculator, the remote bolus function as a Type Zero controller that will follow by mid 23. And it is a Lilly product from a user perspective, but it's manufactured in Switzerland. Stacey Simms 12:35 It's so interesting to hear you say these things that a few years ago would have been very foreign to us. I think my audience is familiar now the ACE designation, Type Zero, which is the software that's inside. It's incredible, just to take a moment and think how far things have come Simon Michel 12:52 across fast pretty fast. Yes, Stacey Simms 12:53 goodness. But to be clear, Type Zero is the I would call that a hybrid closed loop software. So that's the software that will in very plain terms, work with the Dexcom to increase insulin or decrease insulin to try to keep people more in range. I just want to be crystal clear about that. Simon Michel 13:11 None of those days. Absolutely. I mean, I mean, Type Zero belongs to Dexcom. And of course Type Zero is further working on on new versions of the controller. It's a constant enhancement. At the moment, the features that you described are the ones it's the low suspend function. It's the hybrid adaptation of the baseline rate. There's the micro bolus element, there are a couple of features which have one goal to bring us to bring patients with type 1 diabetes in in time and range Stacey Simms 13:35 the ACE designation, and I get a little confused on this. So I apologize in advance. That's all about interoperability. Right That's about making these new technologies compatible with other devices. Right back to our conversation, but first Diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar that can be scary. A very low blood sugar is really scary. That's what Gvoke HypoPen comes in Gvoke HypoPen is the first autoinjector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle means it's easy to use. How easy is it, you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke HypoPen logo. g book shouldn't be used in patients with pheochromocytoma or insulinoma visit gvokeglucagon.com slash risk. Now back to Simon talking about interoperability and the East controller. Simon Michel 14:40 Well, I mean, the great thing is that it's much easier to add different devices or different controllers to it. Once you have the ACE type designation you can actually change or upgrade a controller as it only is doing a lot of research on on controllers. So think about the might use their own controller in the future. Together with their new insolence. You can Think about situations where you can do better therapy better time and range when you combine new insulins with new controllers to actually use the insulin data to make better controllers. And also on the sensor side, it's possible that other sensors would come to the system at the moment, we love our partnership with Dexcom. It's great. It's really works perfect. But it's just it just shows an openness, that it's basically easy to add something else. Stacey Simms 15:22 I have another question you may not be able to answer. I will be talking to Lilly about this. And it's really a question about them. I was at Lilly's headquarters in Cambridge, the headquarters for this project a couple of years ago, where they showed us their pump prototype because at the time they were working on building their own hardware. And obviously that project, I don't know if it's put aside I'll ask them about that. But this is not that pump. Correct. This is not the the pump that Lilly developed their partnership with you is using your hardware? If so meds pump, not this Lilly, it was a little circle disk pump that they showed us at the time. Simon Michel 15:56 Yes. If the pump is purely manufactured by IP summit, it is the product designed here in Switzerland, that will be the pump that Lilly will use. You're absolutely right, Lilly was working on our own pump program, patch pump type program for many, many years. But you have to ask them they recently paid to our knowledge, they recently recently stopped the project, and are now fully focusing on our joint partnership to bring a cement Lilly pump to US patients. Stacey Simms 16:25 I appreciate you answering that. I know that's more of a question for Lilly, and we'll talk to them about that for sure. But you know, insulin affordability is a huge issue in the United States. And we are we are struggling with that and a lot of our health care system right now. But making a pump that only uses one type of insulin is going to limit options. And I gotta be honest with you, I think people are, it's it may not be seen as a very popular feature. You know, we have insurance issues in the United States. I just went through this with my son, where we'd been on one insulin for many years. And then my insurance company said, No, you you have to use this other insulin. And that can happen here. Are you concerned about that at Simon Michel 17:02 all, this will happen, of course, but it is ultimately beneficial for a health care system. And I can make the comparison with mobile phones. So if you have a mobile subscription, and you have your fixed lens subscription or internet subscription, you get a better deal. Now, this approach is to really bundle all these elements, and it will ultimately very much be much better beneficial for people with diabetes, it will be better for the healthcare system as of lower cost....
/episode/index/show/diabetesconnections/id/17421659
info_outline
"It's Like a Huge Drop Of Hope" - Health Care Providers with T1D get the COVID Vaccine (Bonus Episode)
01/01/2021
"It's Like a Huge Drop Of Hope" - Health Care Providers with T1D get the COVID Vaccine (Bonus Episode)
Let's start off 2021 with some hope! This week you'll hear from five health care providers who received a COVID vaccine in late December 2020. They all live with type 1 diabetes and share their experiences leading up to the vaccine and how they felt after getting it. These folks all got the first round of the Pfizer vaccine, which means they are all scheduled for another shot right around the time this episode goes live. Back in September, lives with type 1 diabetes and asthma. She has completed the vaccine part of the trial – two shots – and says she's had no bad reactions and no regrets. This episode: 3:00 Danica, a diabetes educator 8:48 Dr. M, a pediatric endocrinologist 14:00 Michelle, an ICU nurse (who's breastfeeding) 18:40 Geoffrey, a hospital worker 22:30 Dr. Stephen Ponder, a pediatric endocrinologist who's lived with type 1 for 55 years. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available as a paperback ebook or audio book at amazon.com. Announcer 0:19 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:25 Welcome, everybody. And Happy New Year, I am so glad to have you along for a little bit of a different and special episode of Diabetes Connections, I thought it would be a really nice way to start off this new year with some good news. Look, we're far away from leaving 2020 and everything that happened behind right, there's a long way to go. But this is an opportunity to sort of turn the page and look ahead to brighter days, and give you some news and information and stories from people with type one, which as you know, is what I am all about. And if you don't know if you're new, Hey, welcome. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host, Stacey Simms, and my son was diagnosed 14 years ago with type one right before he turned to my husband lives with type two diabetes. And I don't have diabetes, but I have a background in broadcasting. And that is how you get the podcast in about mid December. late December. I noticed like a lot of you did I'm sure that people I knew were posting photos of themselves getting the COVID vaccine, right. These are healthcare workers. These are our front line in hospital, usually who are able to get the vaccine in the very first batches. And how exciting is that? And the photos were really hopeful and really gave me just, I don't know, a feeling I hadn't really had for most of 2020. So I wanted to talk to some of these people and find out more and get you some information as you live with type one or if people in your family do, what to expect what their reactions were. So here is what we've got. For this episode, I spoke to five health care providers who all live with type one who received a COVID vaccine in late December 2020. These folks all got the Pfizer vaccine. That means they're all scheduled for another vaccine. There are two doses in the Pfizer protocol. And for most of them, that second vaccine is coming right around the time this episode goes live. There are four shorter interviews with a diabetes educator and endocrinologist registered nurse at a hospital worker. And those are more about personal experiences. And then there's a longer interview with Dr. Steven ponder who is likely a familiar name and a voice maybe to longtime listeners, Dr. Ponder goes a little bit more in depth with me about the vaccine and about staying safe with type one. As we head into this new year. He also talks about things you might want to think about and questions you might want to bring to your physician. Please keep in mind that all of these folks were kind enough to share their personal experiences. They are not speaking for their hospital systems or workplaces and they are certainly not giving medical advice. Okay, Up first is Danica, who you might know as Diabetic Danica, she has been on the show before she has big YouTube and Instagram following and she is now a diabetes educator. I started out asking her about her reaction, when she found out she be able to get the brand new vaccine. Danica 3:21 Or at first we didn't think we would get it so soon because we knew the frontline people were going to get it first. So we work in the clinic but we're not like on the floor that treats COVID patients. We have COVID patients, we do it via telehealth like on an iPad video call. So we've got to do a little bit but the day after or hospital got it we got to get it to so I was really excited to kind of definitely was the most I've ever been excited to get a vaccine before. Just because there's been all this buildup and it's been such a hard year. And I don't know just overall just excitement, which is kind of weird when you're just getting a vaccine. Stacey Simms 3:56 No, I think we're all feel very hopeful, right? I mean, we all kind of started hearing about it and think I can't wait. So it just explained this is the the shot where you need two shots where you'd be going back for the second. Danica 4:07 Yeah, so it's a two shot one. But it's nice because they have you schedule it while you're waiting afterwards. Because just to be safe. Since it's a newer vaccine, they want you to wait 15 minutes after to make sure you don't have like an allergic reaction. So while we're sitting there, they had us just schedule our next one. So I already have it scheduled. And I'll just go in and get it just something. I honestly was a little nervous after I got it. I was excited. But I was like, Well, what if I do have a reaction? You know, because that's what everyone's worried about. I feel like and that's the majority of the questions I got afterwards was How are you feeling? Was that effective you had I think everyone's really worried about that but I felt fine. I the only side effect I had or symptom, wherever you want to call it was my arm was sore, just like the muscles in it. But that happens to me when I get my flu shot. So it wasn't super alarming to me. I'd say the arm soreness was worse for me than with a flu shot but the actual poke it didn't even feel so like when I got the shot. There was absolutely no pain for me. And then later, I just got sore for about a day like probably 24 hours. I didn't notice any changes in blood sugar, it seems like just run of the mill for me. I don't think it affected anything there. Stacey Simms 5:14 What has it been like for you in the clinic? Can you talk about your routine and how you stayed safe? Danica 5:18 Yeah, you know, it was it was really stressful at first because things were changing. And it was very and so like, every day, I felt like we were getting multiple emails about new protocols and things we had to do. Now it's more routine, which is helpful. You know, we wear masks and eye protection. And we really thoroughly wipe down high touch areas, they call it in our patient rooms, the doorknobs and the chairs and the keyboards and everything, this stuff that kills the virus. And I guess I thought it was I don't know, if anything major has changed. I mean, other than me looking at the numbers every day to see how they're going up or down and making sure I'm on top kind of what's new with the virus, just in case patients ask. But I thought it was a lot more stressful at first, like we're getting super used to wearing masks in the room, but I'm still looking forward to the day when I don't have to because it's kind of hard to talk to someone for an hour with a mask and everything covering your face. You know, Stacey Simms 6:10 how has this year been for you? I mean, you've been able to go to work, which I think is probably has been very helpful. But what has it been like, you know, how are you holding up? I guess is what I'm asking. Danica 6:20 Yeah, it was it was harder for us, like I mentioned, just work stress, that kind of thing. My day to day work, life hasn't changed a whole lot other than the extra precautions. And initially, we were shut down in my state. So I, I couldn't see my family and I was spending a lot of time at home. So mostly on weekends, I would notice it the most where I'm like, I'm not doing anything fun. And then it opened back up. And so with precautions, we could go out and do things. I feel like I'm hiking a lot more this year for the outdoors and distance and just beautiful one so fun to do. But in my personal life, it's actually been a great year, it is so funny to say to say overall, it's been such a crazy year, but my parents moved to the same town I live in which I'm super excited about. I became an aunt this year, and my little niece was born. And I started seeing my boyfriend as well. So just a lot of like personal life things that have been really exciting for me. So it's been kind of nice to have those as a happy distraction in the midst of the Unknown Speaker 7:13 craziness. Stacey Simms 7:14 I'm so glad to hear that. It's great to talk about good news. That's wonderful. Danica 7:18 I know. Yeah, there's always something good. And all the bad. Stacey Simms 7:22 I wonder to the people who are giving the other health care workers the vaccine, were they very Matter of fact about it. Were they excited? I imagine there was more words in your mouth. It's like there be more joy than there hasn't been for a while. Danica 7:37 I thought it was exciting. Yeah. Anyone the person one of the people who checked me in and someone I worked with in the diabetes clinic today, she's a nurse practitioner. So we were just catching up to and talking about that. We were excited about it. She hadn't got her vaccine yet. So she was looking forward to getting it most people working there hadn't gotten it yet, you know, because they're just volunteering, I assume to to kind of help out with it. So it was a cool process to be a part of. She ended up getting it low later that night, because they had two extras, and they were already out of the freezer. So they had to give them so Wow, that was kind of fun to hear about later, too. But yeah, I think overall compared to me getting my flu shot, it was a much more exciting thing. And you could tell it was a little new just because they they couldn't remember all the questions they had to ask me they had to look at their little cheat sheet, which is totally fine. And you could just tell she's like, I gotta do this a couple more times to be able to drink it. But it was like a teamwork. And yeah, they were doing a really good job. Stacey Simms 8:29 My next interview is with Dr. Jacob masse check. He's a pediatric endocrinologist who was diagnosed with type one as a teenager. He's been in and out of the hospital this whole year and his clinic as well. And he goes home to his family, which includes two children. So he was thrilled to hear that the vaccine was available through his hospital. Dr. M 8:48 I feel excited about it as well. I think this is, you know, the light at the end of the tunnel. So I'm thrilled that we have vaccines. I know Stacey Simms 8:57 you work in an office that probably more than most has had so many questions about COVID because you treat kids with type 1 diabetes yourself live with type one, what was your reaction when you found that you'd be among the first Dr. M 9:10 I'm very excited to receive the vaccine, we get regular updates on vaccines and get a sneak peek into how these vaccines are developed and how they work. And I actually think that this vaccine will be very similar and will work in a very similar fashion to the way that the flu vaccines work. So I think it's a safe vaccine. And I'm excited that it's going to be available for most of us very, very soon. Stacey Simms 9:38 It's going to be interesting for you to balance being a healthcare provider. You know, you want a vaccine because you see patients you're in a hospital system, but you also live with type one, any more thoughts kind of for yourself in your protection or all about your patience or a little bit of both? Dr. M 9:53 Well, being a type one, I am at a greater risk for having poor outcomes. If I worked To catch COVID and develop severe symptoms, so that thought is always in the back of my mind, being able to get the vaccine will put me at, I guess at a more comfortable level, seeing patients every day, knowing that I, I am protected. And knowing that I'm also less likely to develop it not only because of my risk, but also the risk of my family members that I love. Stacey Simms 10:26 I imagine that most of the people that you see, I'm making an assumption here, but you know, your pediatric endocrinologist, most of the kids are not eligible, certainly this first wave of the vaccine coming out. But you some of your patients will be some of your older kids and maybe some young adults that you see, what are you telling them? When they're asking, should I take the vaccine? Is it safe? What do you know? What are you advising patients? Dr. M 10:48 My understanding, and I am not an infectious disease expert. But from the kind of peek behind the curtain that we have received as physicians is that I think it will be a safe vaccine, it will work very similarly to the flu vaccination. So I think it's safe, sort of advise my patients to follow the restrictions on their, you know, local scale or state scale. But don't rush out of restrictions are lifted, wait and see what happens wait on the sideline, ever restrictions get lifted, or bans get lifted, we kind of have to think that we are, you know, at a higher risk. And it's better to wait and see what happens instead of rushing out if things open back up. So that's been my advice from the very getgo is, don't be a trendsetter when, when restrictions get listed, Stacey Simms 11:45 when I look at the pictures of health care providers getting vaccinated right now, it has surprised me how excited I am, was that your reaction to tell me a little bit about your you know, the emotion of it. Dr. M 11:59 I think having vaccines that are FDA approved, and that the FDA feels are safe, I think is a wonderful step towards seeing the light at the end of this tunnel. I think it gives us hope that we will soon be able to put this horrible year in the past and move towards a more normal life. I'm very excited about it. I'm thrilled. I think it's everybody's stress level will go down as we see that these vaccines are safe and are working. And we see that trends will start going in a positive direction. By positive I mean fewer numbers of patients testing positive and having complications. I feel great about it. Stacey Simms 12:46 I know you're not like an operating room all day. But I imagine when you come home from work, you've got to take a lot of precautions to Dr. M 12:51 absolutely make sure that I changed my clothing I wash up before I give them a hug. And that is something that I do. And I've been very fortunate knock on wood that I've stayed healthy during this entire ordeal. Stacey Simms 13:06 I've talked to a couple of health care providers who have similar stories of you know, changing outside and doing this for so many months. I can't imagine how great that's going to feel the day that you can be like, come on, I can hug you I'm home. Dr. M 13:18 I think we all look forward to that day. There's a lot of things that we look forward to and you know, this year has been very trying but it also made us appreciate kind of the silver linings in a lot of things. And it's been a reset for a lot of things. So I think we'll come out of this ordeal being stronger and having a greater appreciation for things that we may have overlooked in the past. Stacey Simms 13:43 You will next hear from Michelle, she's a registered nurse and she has spent this year working with COVID patients. She has two small children. And as you'll hear, she's breastfeeding which was something she gave a lot of thought to before she decided to get the vaccine. I asked her to kind of describe of what's going on with her day to day. Michelle 14:02 I'm I'm busy. a mom of three year old and a 10 month old. I'm a wife. Unknown Speaker 14:10 I'm a registered nurse, Michelle 14:11 I work taking care of COVID patients. Normally I work in the ICU and like on a telemetry unit. And then I'm also in grad school pursuing family nurse practitioner. So I have a lot going on. Stacey Simms 14:24 Yeah, what is this year been like just with COVID patients? Well, we Michelle 14:27 we prepared in March for this huge surge because we're in Pennsylvania and New York's right next door, and it didn't come. But our surge is now like our inpatient census is around 100 patients total for our hospital and we have 60 COVID patients right now. It's more than we can handle. It's all hands on deck. Stacey Simms 14:46 What's your routine like for coming home? Michelle 14:48 So with the two little ones, they don't understand that you can't touch mommy. So I shower at work. And then I come home so I end up getting home kind of late. If I finish everything On time 715 731 I've done so I don't get home till 815 at the earliest. Stacey Simms 15:05 So tell me about the COVID vaccine. When did you find out you were eligible? And how quickly did you say? Yes, Michelle 15:11 so I've been thinking about it long before it was even a possibility, and doing research and reading. And when I saw that the Pfizer vaccine was approved, our CEO, she's awesome. She's very transparent. She sent us emails all along. And she said that our hospital had applied to be a distributing center. And then she emailed us and said that we were approved, so I knew it would be coming. And I had already done my homework to know that I care for COVID patients, right, I see like the worst of what COVID can do. And to me a vaccine with a little risk or COVID with intense risk, Stacey Simms 15:48 it wasn't really much of a question. Were you concerned? Or did you ask about type 1 diabetes? Did you talk to your endocrinologist? Or did you say, Okay, I know enough, I've seen enough. Michelle 15:58 I actually, my endocrinologist doesn't know that I took it, I I did talk to my primary care doctor, who's also the pediatrician for my children, and I am breastfeeding. So I just wanted to check and make sure that it was going to be okay in that way. But the research shows there hasn't been breastfeeding research on the vaccine. But in general, vaccines are safe for moms to get when they are breastfeeding, and the chance of passing through breast milk is very small. So I considered all that I consider the risk for myself of getting COVID with type 1 diabetes, and I just didn't feel like the vaccine was going to be the big risk. Actually, I think I haven't gotten the COVID assignments as much as some of my other co workers have. And I honestly think that's because nobody else say it out loud. But my co workers know I have type one. And I think they're looking out for me, which is huge. Stacey Simms 16:52 I'm curious what advice you would give as a you know, as a health care practitioner, as someone with type one who has seen COVID this year in a way that most of us have not, you know, what is your message about the vaccine? Oh, Michelle 17:04 I think Americans like to think that...
/episode/index/show/diabetesconnections/id/17380535
info_outline
T1Detect: A New At-Home Test For Type 1 Diabetes
12/29/2020
T1Detect: A New At-Home Test For Type 1 Diabetes
Could a new, simple at-home test change the way we look at diagnosing type 1 diabetes? JDRF hopes to make something called T1Detect part of annual health checks someday. Dr. Frank Martin is a Director of Research at JDRF. He explains T1Detect in detail, including what the test is like, what it costs and where the information goes. And.. in our last scheduled show of 2020.. Stacey talks about ending this lousy year with a lot of hope. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:16 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:22 This week, a new simple at home test for the antibody markers of type one JDRF is rolling out T1Detect, something they hope that someday will be just part of regular health screenings. Frank Martin 0:36 We would like to see this included so that right off the bat, we know how many people in the United States and in the world are at risk for developing insulin dependence so that we can intervene earlier into these people we can improve their health right at the beginning. Stacey Simms 0:49 Frank Martin is the Director of Research at JDRF. He explains T1Detect in detail including what it costs and where the information goes. And it's our last scheduled show of 2020. I want to talk about ending this lousy year with a lot of hope. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you here we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host Stacey Simms, my son Benny was diagnosed with Type 1 14 years ago right before he turned two, my husband lives with type two diabetes. I don't have any type of diabetes, I have a background in broadcasting. And that is how you get this show. And here we are at the end of 2020. I was taking a look back I put out 71 episodes this year, we passed a million downloads, including 100,000 podcast views on YouTube. I talked to people around the world this year, including a mind blowing nine person six time zone game show over the summer, playing Hollywood Squares via zoom isn't something I'd expected to do going into this year. But that is just one tiny example of how we all I think tried to find some good in the great, awful. That was 2020. That's what I've been calling it. I'll talk just a bit more about this year. And my thoughts into next year. And some other news plans I have. I'm going to do that at the end of the show after this interview. So I hope you stick around after that. I don't know about you. But I was really intrigued when I saw JDRF putting out a lot of posts, a lot of ads, really try to spread the word about T1Detect this new at home antibody test. My guest Frank Martin does a terrific job of explaining what it is they're testing for, and why and how it works. I'm not going to do that here. But we have spent a lot of time over the last few years talking about TrialNet and the work that they have been doing in this space. I am a big fan of TrialNet, I will link up more information and the episodes that we've done about their research. And if you're not familiar, real quick, TrialNet does do testing to see if people carry the antibody markers. They are a research study as well, they are trying to learn how to prevent type one. And we do talk about that in this interview coming up. But again, I'll link back to other interviews that we've done. It's been quite a few over the years. And you know, they're likely going to get approval for Teplizumab, the medication that is now shown to put off the development of type 1 diabetes for three years. So all of that to say why do we need to detect, right? Why this and why now, I think Frank does a great job answering all of those questions and more. And also, there is a video version of this interview. I'm doing that more often. And that's why it may sound just a little bit different. As we start, you can go watch the whole thing if you prefer over on our YouTube channel. It is Diabetes Connections over on YouTube, but it's the same interview. It's just your preference. Whether you like to listen or you prefer to watch. I'm talking to Dr. Frank Martin about this new program from JDRF really caught our attention and wanted to learn more about it. Dr. Martin, thanks for joining me. Frank Martin 4:10 Thanks very much, Stacey. It's good to be here. Stacey Simms 4:12 Yeah. So tell me a little bit just in general about T1Detect I think a lot of people saw it pop up on social media got it in an email from JDRF. What is it Frank Martin 4:21 first off something we JDRF we're very proud of our our mission is really around accelerating the development of disease modifying therapies to help slow cure or prevent to one day and towards that we saw that there was a gap there is a need to be able to identify more people who might most benefit from therapies like that. And right now, there's a lot of great programs like great research programs that are doing this places like TrialNet, the asked program in Colorado, there's a lot in Europe as well. But those programs still aren't identifying enough people. So how do we identify more people? We knew that we need To educate more people about what it means to be at risk for T1D, that it's not just family members who are at risk, but I think it's almost 85% of people who are diagnosed don't have a family connection, we need to be able to teach the general population teach the United States and hopefully the world that this is a real issue. So T1Detect really is an education program and awareness program about type 1 diabetes and its risks. And then a very important component of that is making the test available to people. Because right now, they're not really available to people except in the context of research settings, or as people like you might know, in the context of an actual T1Ddiagnosis, when someone's has super high blood sugar, they're in the hospital. And then the doctors will do a confirmation test to see if it's type one, we want to make it available to people who don't yet have symptoms. So hence, T1Detect. Stacey Simms 5:49 All right, so tell me about how it works. It looks like you get something in the mail, tell me about the test, like the physicality short, Frank Martin 5:55 short, so you can go and find the test in a couple different places. First and foremost is the JDRF. website, we have access to information and the test kit button on our website through T1Detect, you click the button, it gives you some information about what it is to have to on D what the risk factors are, what are auto antibodies, because remember, we're What are we testing for, we're testing for auto antibodies, one of the major signs and symptoms that people have the autoimmunity, at least a T1D, you click the button you go to the Enable portal enable is the company that's running the test for us fill in some information, we're asking for your name, mailing address, things like that, we're also asking for some demographic information, we want to learn who's getting to end who's at risk, and that'll help us improve the program going forward. And then you come to a choice where you can pay for the test, the test is not terribly expensive, it's $55. To run the test, plus or minus a couple taxes, you also have the option if you cannot afford the test to have JDRF pay for the test for you will pay for the bulk of the cost. I'm leaving you with just a copay. $10. Right now, it's not a feature to ask your insurance company to pay for this, but in the future it will be. So all that being done, the test will get sent to you, you'll get a little box in the mail. And it was pretty simple. I did it. You have a Lancet, you poke your finger. And then you fill in two out of four of these circles on a piece of cardboard, let that dry and send it back. And then a couple weeks later, the company will tell you, you have one, two or three of the type 1 diabetes specific auto antibodies. Alright, so Stacey Simms 7:34 let me just stop you right there. It's a it's a finger stick, you guys are providing the Lancet Frank Martin 7:38 in the envelope and the band aid and the gauze. It wasn't very hard. I wash my hands first, there's a little alcohol swab to sterilize my finger. And then I did the test. But one of the benefits of what we're testing for, it's sort of a little resistant to dirt and contaminants. Yeah, I would Stacey Simms 7:55 think you know, you're not you're at home. You're not in a sterile lab. Yeah. Frank Martin 7:58 Yeah. So it's been okay. The reason we partnered with enable bio sciences on this particular test kit was because they've tested it a lot in this situation, and shown that when it's performed at home, and I have dogs, there's dog hair in my house, there's all sorts of crazy things going on in your house, it's still met the sensitivity and specificity requirements that we would need to say yes or no, you have the presence of this marker. So we have some pretty good confidence in the validity of the test. In that regard. Stacey Simms 8:27 I have a lot of questions. Sure. My first is, and we're going to talk more about the test itself and what you're testing for and what you do with the results. But I have to say my first question is, if you're looking for people who are not touched by type one already, right? You want people who don't have it in their families? I have to say, I'm not sure jdrf I didn't even know what that was right before diabetes, why not reach into pediatricians offices or, or other organizations? Or is this coming? Frank Martin 8:54 So that's, that's a great question. I've two answers. First is, yeah, if you if you don't know jdrf, if you don't know T, one D, it's not going to resonate with you to see now that there's a test available to tell me about that. So there's a huge education campaign. That's part of this. But we're going to educate people through social media, places like Facebook, web and D to tell people in the world who wouldn't normally know about tea, Wendy or jdrf. What this means that's an important component of it. The second is, how do we educate doctors who may not be familiar with tea one day, not all doctors are super familiar with it. So there's a huge healthcare provider education piece, that's also part of this program. That's why this program is not just a screening program. It's very heavily into patient education, population education, health provider education, and all those things are kicking off now. So this week, I think you'll start to see some social media campaigns around it. And in the new year, we'll be rolling out the health care provider education pieces. Unknown Speaker 9:52 So let's get back to the test itself. Frank Martin 9:54 Sure. Stacey Simms 9:54 What are you testing for? I don't know how specific you want to get a scientific you want to get It's not a question of high blood glucose and that sort of thing, right? Frank Martin 10:03 It's not. So let's take a little step back to the about the biology of type 1 diabetes, the biology of autoimmune diseases. So type one is an autoimmune disease, you know that I know that not everyone knows that it is. And one of the ways we can tell a person who has an autoimmune disease is we can look in their blood for signs and symptoms of that signs and symptoms that their immune system is doing something is not supposed to be doing. In type 1 diabetes, we look for something called auto antibodies. Now auto antibodies are something that that's sort of a general term to all different autoimmune diseases. People with multiple sclerosis have auto antibodies, people lupus have auto antibodies. What we're looking for in type 1 diabetes are auto antibodies that are specific to type 1 diabetes. And what makes them specific to type 1 diabetes is they are specific to things that are in your pancreas. So we actually are looking for three of the four primary auto antibodies that have been determined through many many years of research to be very good diagnostics for type 1 diabetes, they're IAA, IA2A and Gad, 65. Some people may remember those names from trial net or other organizations. But there are three of the four that help us diagnose to end and predict your risk. Now, we're not doing the fourth, but we will soon do the fourth. But based on those three, if you have two or more of those, we know pretty well that your risk of developing insulin dependence is very, very high. In fact, if you have two or more of those in your blood, you already have type one diabetes. So that's something people don't understand. Right? If you have two or more of those auto antibodies in your blood, you already have type one diabetes, you may not be symptomatic, but you already have it. Stacey Simms 11:46 Well that Okay, so I know people who've gone through trial net and have had two or more of the antibodies and don't don't have well, they have type one as you're saying, I guess, but they don't have the signs and symptoms. Well, how is that Right back to our conversation in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's what Gvoke HypoPen comes in. It's the first auto injector to treat very low blood sugar. Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give Gvoke correctly. I am so glad to have something new, find out more go to Diabetes connections.com and click on the Gvoke. logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon com slash risk. Now back to Frank, and he's answering my question about people who test positive for the antibodies, but don't go on to develop the classic signs of type one. Frank Martin 12:59 When we talk about populations and health, there's always people at the far end of the spectrum, those people are at the far end of the spectrum, they don't represent what is normal for the whole population. There are a few people who who have two or more auto antibodies who never become insulin dependent. There's also some people who don't have any auto antibodies who become insulin dependent, and that is type 1 diabetes. It just means that in those people well in the people who are more who don't get insulin independence, there's some sort of protective mechanism going on there that I can't entirely explain right now, in the people who don't have these classic auto antibodies, it means they have something else in their blood that we're just not testing for. Stacey Simms 13:40 I mean, I know the research isn't perfect, and it's not, you know, exact, but those things are important. Which leads me to my next question, which is what happens when someone gets their results? And they find out they do have these auto antibodies, what is the testing system do for them, so they don't honestly get worried. And that's tough information to get if you're just home in your house opening a box, Frank Martin 14:01 right? There's a couple things that happen through screening and a to end diagnosis that can be scary one, they're scary, they they can cause a lot of psychological distress to the patients, their families. Also, some people get diagnosed with T1Din a really serious medical situation called diabetic ketoacidosis, which is in and of itself scary, and which in and of itself can cause worsened glucose control over the rest of your life. So there's a couple things we're doing to mitigate all these factors. First, we know that sometimes people get stressed out when they're thinking about getting screened for T1Drisk or when they learn about T and D risk. And we're making it perfectly clear that there are health care providers at their disposal, who they can talk to specifically for the mental health concerns around getting a risk diagnosis. Also jdrf has specific volunteers who are trained in talking to people who have recently been diagnosed with TMD. They've been through it themselves. They can see Say what their journey was like, What is good, what is bad, what to worry about what not to worry about. And that sort of personal communication, that sort of personal support is really important to help mitigate those stresses. And so we're going to deploy those same people, to the people who get a risk assessment from our program. Stacey Simms 15:17 So and I really appreciate you going through this, because you are a scientist you are, you know, you're kind of going above and beyond, I believe, talking about the mental health and support here, but I think it's so important science to Good point. So when I'm home, I get my envelope, it says you have these markers, here's a phone number to call, or here or next, someone's Frank Martin 15:34 gonna call you. Okay, so first, you'll get your results, you actually will get an email from enable saying your results are available, you'll have to log into the website to see your results. Now enable the company will know that you're in a high risk category, they will have a medical doctor call you to provide the results to you over the phone and talk to you over the phone, then you'll start to receive a series of messaging campaigns directed to you coming from jdrf saying we understand what's happening, this is what we recommend you to do. A lot of the recommendations are follow up with your primary care physician, you probably should get a glucose test after this, we're giving all the recommendations that we know from our own experiences have helped in the future, we'd like to see maybe a network of care around these people. But we don't have that yet. We don't have the ability to recommend a specific doctor to these people. But we can advise them to talk to their own doctor, we can support them through their jdrf network and give them the resources they need to make this journey as painless as possible. Stacey Simms 16:37 I have to say, I am so glad to hear that you are not going to wait to be contacted by them. Because you could that was my fear just looking at this as someone who's been through the process. No, you know, when you get a diagnosis, you're not thinking straight at all. So I think it's great that you're gonna be telling we've done Frank Martin 16:53 this before, right? Yeah, part of the of the benefit that is jdrf is, is we're made up of people who have to end who've been through the diagnosis, who have a lot of experience and support to offer to to new families. And so it's the least we can do in a program like this, to offer that to a person just finding out that they're at risk. Stacey Simms 17:12 You mentioned the four antibodies, yes, pressing for three, what's elusive about the fourth one, Frank Martin 17:19 it the other one's called z 28 zinc transporter aid. And it's just a trickier protein to work with. So the assay that the company's using right now just doesn't...
/episode/index/show/diabetesconnections/id/17348624
info_outline
Wait Wait.. Don't Poke Me! The Diabetes Game Show (2020)
12/22/2020
Wait Wait.. Don't Poke Me! The Diabetes Game Show (2020)
It's our annual game show! Based on NPR's Wait Wait... Don't Tell Me, Stacey invites panelists to try their hand at diabetes trivia, bluff the listener and limericks. This was first presented at the Friends for Life Virtual Winter conference where the audience played along via online BINGO. Watch the show on Special thanks to our panelists: Lauren Lanning, Justin Masterson and Chelcie RIce! ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcript (beta version - check back for proof read version) Stacey Simms 0:00 Diabetes Connections is brought to you by Jeeva Chi popin the first premixed auto injector for very low blood sugar, and by dexcom take control of your diabetes and live life to the fullest with dexcom Announcer 0:16 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:22 Welcome back to another week of the show. I am your host, Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection, a different sort of episode this week, because this is one of our game shows. I do these periodically for live audiences, usually at conferences and that sort of thing. And this year, we have kind of like everybody repurposed things for virtual. And so this time around, it was friends for life and their virtual winter conference. A couple of quick things. If you prefer to watch this is on my YouTube channel for the show. It's just Diabetes Connections over on YouTube, I will put a direct link in the show notes. And while it is kind of fun to watch these things, you don't really miss that much just by listening. In the trivia section. I will say there are three questions that are show and tell. But I do describe what the guests are seeing. I think you'll easily get it even if you're just listening. As always contestants are selected at random from the Facebook group from Diabetes Connections, the group, so make sure to join me over there because we do this now a couple of times a year, especially with everything virtual and people on zoom. It's so much easier to record these than in the past. I still really love doing it live and I hope to do that someday again soon. But in the meantime on with the show, recorded in November, and played at friends for life the first weekend of December 2020. Welcome everybody to wait, wait, don't poke me the diabetes Game Show. If you have heard the NPR version of Wait, wait, don't tell me. This is our version. So we apologize to NPR in advance. In this session, you are going to meet some terrific people living with diabetes or who have diabetes in their families who have gone above and beyond to help the community and we're going to have a laugh or two, probably at their expense. Wait, wait, don't poke me. We'll feature trivia bluff the listener and much more. But before we get to the games, let's get to our panelists. We'll do a quick intro and then we will get started. So first let me bring in Justin Masterson. Justin Hi, I first met Justin, when we were talking on the podcast about his walk a mile cards and exercise and empathy, a teaching tool to help those with diabetes understand a little bit about what people with diabetes go through every day. Justin's daughter was diagnosed with type one when she was five. She was diagnosed on her birthday. Yeah, he is in charge of strategy at seek a market research firm. Fell old is your daughter now just Justin Masterson 2:55 she just turned 11. So her birthday was just a few days ago, Stacey Simms 2:58 when she was really diagnosed on her birthday. Justin Masterson 3:00 it well. She fell on her birthday, but we got there the next morning. So it was technically the day after but she's now been six years and and living very well. Stacey Simms 3:11 That's awesome. All right. Well, we will hear more from you for sure. I want to bring in Lauren laning and Lauren is a familiar name and face to many people and friends for life. She's been there usually at the first timers since the very first ffl in 2000. She used to run registration at the elementary program now she leads the moms and the first timers. Lauren's daughter Monica was diagnosed in 96. And she has been I can say first and amazing at these muffle meetups. We've been doing boring. The muffled meetups have been awesome. Thank you. Oh, I Lauren Lanning 3:45 love them. It's great. It's great being able to connect with the fit. Stacey Simms 3:50 Yeah, so your daughter was diagnosed in the 90s. How was she doing now? Lauren Lanning 3:54 She is doing great. She's 20 she'll be 27 in a couple weeks. And she's at p in PA school at Stanford right now. Gotta brag. Wow. Stacey Simms 4:04 Yeah, go for it. That's awesome. And rounding out our panel is Chelsea rice. I Chelsea, he was diagnosed with type one as an adult at the age of 25. He's been part of the diabetes community since I can remember. Chelsea is a stand up comedian who doesn't just talk about diabetes, of course, but he has been honored by diabetes forecast Magazine as one of their people to know and he has brought much needed education and humor to groups like healthy voices and Chelsea, your you've really found a talent this year for making soap. I've been seeing all this beautiful soap. Chelcie Rice 4:37 Yeah. I've been locked in the house for quite some time. And so, you know, you get stuck with the phone in your hand and you get started looking at YouTube is like, you know, you take a shower, like you make stuff. So it's I mean, and that was like I and it's something that I that I do, if I see something that I get interested in Figure out. How do you make it? So that's how I even started. That's how I started baking. barbecuing. All this stuff is just like I just, you know, try to figure out okay, how do I do this? And so it just, I just picked it up and is is really kind of easy. And the funny thing is when I started just posting pictures, I was like, hey, how can I buy something like you know what I put in his name? I'd be like, you don't even know me. Stacey Simms 5:29 The soap looks gorgeous knows. I actually thought it was I thought it was food when you were first. Chelcie Rice 5:33 Yeah, no. That's the funny thing about soap is like, I mean, people talk about it. Okay, I've joined some soap groups on Facebook. Justin Masterson 5:45 That is such a quarantine thing to say. Yeah, join some soap groups on Chelcie Rice 5:48 Facebook like and that's the thing is like people were saying like, Okay, well, you know, people are quarantine now they're at home and they learn how to cook more than like baking sourdough. Random like, wash your hands with sourdough. I can make them fortune over this. So Stacey Simms 6:03 all right, well, as we move on here, you are each playing for a contestant who has been selected by random from the Diabetes Connections Facebook group. So let me tell you, who you are playing with and for and we thank them very much. So Michelle Briggs is playing with Justin. All right, Michelle. Yeah, fi Comstock is partnered with Chelsea. And Caitlyn states is with Lauren. So no pressure. But these very loyal wonderful podcast listeners are counting on you. Alright, Caitlin. Unknown Speaker 6:40 money involved? Am I gonna, ya Stacey Simms 6:43 know, hey, look, it's all virtual be tough to get Oh, well, yeah, Unknown Speaker 6:45 you know. Stacey Simms 6:46 So we're gonna start with trivia. And each of you has five questions. I'm going to know we'll take one person at a time we'll go through the questions. Don't chime in with the answers. But feel free to chime in if you have a comment or something you'd like to add. Or if you have personal experience, these are all diabetes community questions. They're not all about diabetes, which will become clear and write it Don't worry, don't worry, it's not, you're not going to be judged. I also do have some show Intel because we're at home in my office. So I thought why not? pull some stuff off the shelves and ask you about it. Alright, so we're gonna start with Justin. Everybody ready? I would stare at the clock if I had one. But hopefully we'll just we'll we'll just let you know when you're at a time. All right. Our first question comes from the field of sports. NFL tight end Mike Moore. I'm already messing up. NFL tight and Mark Andrews has type one. And he plays for the Ravens. He keeps a strict diet around games reportedly eating for eggs before every game and the same kind of sandwich the day he plays. And the night before. This sandwich is a staple of school kids. What is it? Unknown Speaker 7:57 Oh, man. Justin Masterson 8:00 My school. We ate a lot of chicken fried steak and salsbury steak. I don't think either of those qualify as sandwiches. I'm going to say it's the school kid. It's going to be a pb&j. I mean what's better than a pb&j? Stacey Simms 8:16 It is a PB and J and he says a lot of peanut butter. Not a lot of jelly. He prefers the complex carbs that come in. But I would think that the chicken fried steak is a complex something. Yeah. Unknown Speaker 8:30 It's complex. Chelcie Rice 8:32 Complex. There's so many complex things that go in it. Yep, yep, yep. Stacey Simms 8:36 All right. Excellent. All right. Next question. There is an eternal flame at Banting house, the Canadian National historical site where Sir Frederick Banting woke up in the middle of the night with the idea that led to the discovery of insulin. The flame is meant to burn until there is a cure for diabetes. It was lit by the Queen Mother. In what year? And this is multiple choice. Wow. 1979 1989 or 1999? I don't think this was featured on the crown. So Justin Masterson 9:07 it took it took him like 50 years to get this flame idea going. Unknown Speaker 9:11 Oh yeah, well, at least Yeah. Justin Masterson 9:15 I feel like it would be I feel like it would be in the 70s that feels like it was enough time to get the Queen Mother on board. I'm going to say 1979 Stacey Simms 9:23 incorrect. At 88 which I think is weird. I would have thought it was like 1959 but Chelcie Rice 9:32 okay, was all the rage on MTV. So Stacey Simms 9:36 I just finally figured out all the Elisabeth's in the royal family because of the crown the Queen Mother and the Queen girl anyway. Okay. All right. This is a an entertainment question for you. So brec bassinger is the young actress who stars in the CW hit show star girl actually got great reviews. It's been renewed for a second season. She lives with type one and her previous series was nickelodeons Bella and the Bulldogs and your daughter might have watched this. Maybe not. What sport did the Bulldogs play this whole show centered around this team? Was it football, baseball or soccer? Justin Masterson 10:16 Sometimes my thinking sounds a lot like googling. Now, I'm gonna say it was a soccer team. It had to be the Bulldogs soccer game with Stacey Simms 10:31 the quarterback. She was the quarterback. Justin Masterson 10:36 Michelle, I'll send you something nice in the mail. I'm just sorry. Stacey Simms 10:40 Well, there's a lot of game to go. There's a lot of Don't worry, don't worry. All right. Um, here's one. You know, I, I gave this answer away in the introduction. I don't know how well everybody was listening. I do this sometimes. Alright, here's the question. How old is the friends for life conference? I mean, what year of the conference? Is this year's 2020? lorincz. Unknown Speaker 11:07 Don't say any. Okay. Justin Masterson 11:10 1999. How about that? Stacey Simms 11:15 Well, I'm gonna give it to you. Because it is the 21st year, but it started in 2000. Right. All right. But we'll give it to you. We'll give it to you. That was on the line that was on the line. Okay. And your last trivia question, or this is a show and tell. I hope I don't get in trouble for this. We love all our sponsors. Okay. In in 2018. I don't know how well you can see this. Yeah, in 2018. Can you see this? Okay. accucheck had a diabetes awareness campaign where they sent out these hands, promoted by country singer, Ben NRW. The idea was that you'd make the symbol, right. And you would upload a photo to your social media platform with this hashtag. And then their parent company would donate if they would donate a buck to diabetes, education and awareness. So here's the symbol. What was the hashtag? Was it give a book about diabetes, Buck off diabetes or go buck diabetes? Justin Masterson 12:16 I can't believe any of those are true. Unknown Speaker 12:19 I'm gonna read it again. Stacey Simms 12:25 All right, we look at the answer in just a moment. What do you think it is? But first, Diabetes Connections is brought to you by Jeeva Kibo pen had almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's what tchibo Kupo pen comes in. Chibok is the first auto injector to treat very low blood sugar. chivo hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it? You pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the G book logo. g Vokes shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Chico glucagon.com slash risk. Now back to the game and Justin is trying to guess the buck hashtag Justin Masterson 13:18 give a buck for diabetes buck off that diabetes or go buck Stacey Simms 13:24 go buck diabetes. Unknown Speaker 13:25 Oh my gosh. Justin Masterson 13:29 I'm gonna say it was a buck off. Oh, hey, if those guys ever need some marketing consulting, tell them to give me a call. I think they might be on the wrong track from well, Unknown Speaker 13:43 less. Stacey Simms 13:43 You do Chelsea? Chelcie Rice 13:44 Yeah, I do remember that when I remember seeing is like are they really going with this one? That was Stacey Simms 13:51 there. Remember that at all? Ben rule. It wasn't it was not too long ago. It was 2018. He was on the Today Show or one of the morning shows. And it was it was really cute. I think they had a bull riding thing. I mean, it was really cute. Except for the part that was alright, you did great. Chelcie Rice 14:10 I gotta say, though, when you first pull that out. I thought that was a flying finger of fate from laughing in Asia, but yeah. Which finger to show first it getting easy. We don't want to give it away. Stacey Simms 14:31 All right. So Justin, thank you. Standby. We're gonna move on to Lauren. Now for the other trivia questions. And we're starting with technology. Right this year Insulet changed the name of their hybrid closed loop system from Omni pot horizon to something else. Do you know what they changed it to? Unknown Speaker 14:51 Ah, Unknown Speaker 14:54 no, I don't it's Oh, I'm so bad. No, no, Stacey Simms 14:59 it's Omni. Hi. Lauren Lanning 15:03 I can't remember no go. Stacey Simms 15:06 Sorry, Caitlin. Anybody? No Omnipod five. I don't don't ask me what coober Omnipod five man, Unknown Speaker 15:15 yet Anyone else? No, Unknown Speaker 15:17 no. Justin Masterson 15:19 I know about the Omnipod five as a thing. It just never occurred to me you would change from horizon to five. It feels like a downgrade and Stacey Simms 15:26 it's Omnipod five powered by horizon. Unknown Speaker 15:29 Oh god. Unknown Speaker 15:30 I don't know, either. Okay. Stacey Simms 15:33 Okay, so this one is a little silly, but I enjoyed putting this one together. Major League ballplayer Adam Duvall was diagnosed in his early 20s. He's had a great season with the Atlanta Braves. But in the minors, he suited up with the August green jackets, which is just a great name. What is the mascot of the minor league baseball team? Augusta green jackets. I'll give you three choices because this really has nothing to do with diabetes, but I thought it was funny. Is it an anthropomorphic green jacket? Like you know the Masters little green jacket? Is it a fierce green insect? Or is it a little green golf caddy? Lauren Lanning 16:17 I'm going with the answer. Look for thick, Stacey Simms 16:21 green jacket. green jacket that looks like a person. Yeah, no, it's a green insect. It's the like a yellow jacket. jacket. It's got a little stinger. It's very cute. It's very cute. I had nothing to ask about Adam Duvall. Sorry. All right. Here's a here's another one. You might know this one. Eric church, just one Entertainer of the Year at the Country Music Awards. I was in attendance a couple of years ago when he gave $1 million to a local jdrf chapter at their Gala. What is his connection to diabetes? Is it Oh, go ahead. Oh, we are multiple is his connection. He's got a connection of type one. Is it his mother, his daughter or his wife? Lauren Lanning 17:08 His mother, it is his mother Unknown Speaker 17:10 act. Yeah. Excellent. Yes, his Unknown Speaker 17:12 mom got one. Yay. Stacey Simms 17:16 All right. Um, diabetes, mine ran an article earlier this year referencing how many potential cgms are in the works currently being studied or built or trademarked? How many CGM continuous glucose monitoring systems Did they say are potentially coming? 1929 or 39? Lauren Lanning 17:41 I'm going to go with 29 Unknown Speaker 17:45 it's 39. Wow, Unknown Speaker 17:48 isn't that crazy movie? Unknown Speaker 17:49 Yeah. 39. Unknown Speaker 17:53 Hey, Chelcie Rice 17:56 we really need that many choices. Stacey Simms 17:58 I don't think we're gonna get that many but let's all throw in. Chelcie Rice 18:02 I mean, 39 What are we gonna be buying cgms at like, you know, Kroger or something. Stacey Simms 18:07 People like poor Gary shiner. The You know, there's certified diabetes educator who tries every system he's gonna be covered. Justin Masterson 18:12 So let's just work through all those you can only wear for the time before it really. Stacey Simms 18:19 Unfortunately. Lauren Lanning 18:21 I was on an airplane with him. And I think we were going to London for CWT conference. And i ne had on like, a, he had on a few different pumps testing. Yo, what happens? It was it was interesting. He's Stacey Simms 18:37 amazing. All right, your last question. Great, Chelsea. Chelcie Rice 18:41 No, that was just imagining and trying to go through ATF Yoda. Unknown Speaker 18:45 All that. Unknown Speaker 18:48 Want to explain. Stacey Simms 18:52 Just I'm just beeping every two minutes. Don't mind me. Lauren, here is your show Intel. This is one of the Bibles of diabetes care, right? The Pink Panther book. This is the ninth edition from the year 2000. I think we're all very familiar with this. But the question is, when was the Pink Panther book first published? Was it 1970 1980 or 1990? Didn't didn't. Donna Lauren Lanning 19:25 nine teen. Wait a minute. Wait a minute. It's Monica's Dr. Monica used to go seek Paperchase. Oh, and I used to work for the children's diabetes foundation who publishes the that book. I know this. Ah, it's 1970 Stacey Simms 19:50 it is it is 1970 who knew I didn't know you knew that. That's a Lauren Lanning 19:55 thing. Do the math because Dana was died. Dana Davis was diagnosed And she's got this old and I have to do the math. Stacey Simms 20:04 Yeah. And Barbara Davis center of course is where that so Chelcie Rice 20:07 that free, right? Corning fiberglass marketing? Lauren Lanning 20:13 No I think they paid oh yeah they paid for all the Pink Panther or no did they? Did they pay for it? There were there were very strict rules around how to use the Pink Panther. Well, and everything has been Stacey Simms 20:30 okay in my, in my research, I found that the first two monograph printings were in the 60s created by a parent to their basement using an old army press and sent out for free. So kids gather round and learn how we used to use paper. Actual publication of the book was in 1970. But...
/episode/index/show/diabetesconnections/id/17265089
info_outline
Chris Sparling Brings Type 1 Diabetes to the Big Screen with "Greenland"
12/15/2020
Chris Sparling Brings Type 1 Diabetes to the Big Screen with "Greenland"
The new big-budget disaster movie Greenland comes out on streaming this week. It starts Gerard Butler as the central character, trying to save his family including his son who lives with type 1. Award winning screenwriter Chris Sparling had never put diabetes into one of his movies, but he knows all about T1D. His wife is Kerri Sparling, writer of the very popular, and now archived, blog Stacey & Chris talk about writing something personal into a movie and then handing over control to a different director and producer, as well as what it's like to try to make movies during COVID restrictions. In innovations –JDRF begins at-home early T1D detection. More on the new This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (rough transcript, computer only - check back for proofed version) Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop, created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, there's a new movie all about a big global disaster and it features a main character with type one. award winning screenwriter Chris Sparling had never put diabetes into one of his movies. And he was a bit concerned about how it would all turn out. Chris Sparling 0:41 I became so in a way overprotective of getting it right. And it being portrayed right because the last thing I wanted to do was to finally incorporate diabetes into a movie of mine and for it to end up being portrayed wrong. Stacey Simms 0:55 Many of you already know Chris, sort of his wife Kerri Sparling wrote the very popular blog six until me for almost 15 years. We talk about diabetes in the movie and at home and about the entertainment business during this time of COVID in innovations JDRF begins at home early T1D detection. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you here. I am your host Stacey Simms and we aim to educate and inspire about diabetes by sharing stories of connection. Something different This week, we're going to talk about Greenland. This is a movie it's releasing in the US on video on demand it stars Gerard Butler and Marina Bakkerin who you probably know from the Deadpool movies. I put the trailer in the Facebook group and Diabetes Connections of the group. But the basic plot is that these are estranged parents, maybe they'll get back together, but they are working on their marriage just as a world ending cosmic disaster happens. And wouldn't you know it, their son has type one diabetes, so diabetes, type one insulin, this all becomes a plot point. Now we've talked about this a lot before so many films and TV shows have gotten diabetes exactly wrong. But Greenland has a big advantage. And that is as you heard in that opening tease, and that screenwriter Chris Sparling, whose wife lives with type one, we will get to Chris in just a moment. But first Diabetes Connections is brought to you by one drop and getting diabetes supplies is a pain. Not only the ordering and the picking up but the arguing with insurance about over what they say you need and what you really need. Make it easy with one drop. They offer personalized test strip plans plus you get a Bluetooth a glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door no prescription or co pays required. One less thing to worry about not that surprising when you learn that the founder of one drop lips with type one, they get it one drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the one drop logo. My guest this week is an award-winning screenwriter. He is someone that I've never met, but I feel like I kind of know because for many years I and many of you read about him in Kerry Sparling’s blog SixUntilMe. Kerri spent more than 14 years writing about her life with type 1 diabetes which included meeting and marrying Chris, who has been featured in blog posts about kids and family and everything you would expect. Kerri has stepped back from the blog to pursue other projects in her own writing. And Chris has a big movie coming out this week as this episode airs, Greenland, which debuts on American streaming this week. Chris, thank you so much for joining me. Welcome to the show. Chris Sparling 3:53 Thank you. Thank you for having me. Stacey Simms 3:55 It's great to have you. I feel it. As I said, I feel like I kind of know you. So I appreciate you kind of taking the leap and coming on not a movie or writing podcast, but a diabetes podcast. So this should be really fun. What made you decide I mean, you've been writing movies for an awfully long time. What made you decide to put diabetes? Chris Sparling 4:14 You know, it's something I've been wanting to do for a while this movie presented a pretty unique opportunity for me to do it for a couple of reasons. One, the movie is the first of what's called Greenland. And it's about an incoming asteroid that's going to hit Earth or comet, it's going to hit Earth. It's this existential threat that everyone on earth faces. So kind of by nature of that alone, there's a ticking clock built into the movie, right? It's just when this thing's going to hit you're trying to get to the bunkers in Greenland. I tried to get there safely and survive. And so on the macro level there is that that large ticking clock at play, but the movie itself is different than say, deep impact or Armageddon in that it operates more on a personal level than those two movies do. You know it's not a movie checking in with what the government's doing to try to up the asteroid or anything like that, it's really more like the movie, the impossible if anyone listening ever saw that it's a great movie. And it's all to do with seeing it through this one particular family's lens, how they're going to survive this, this Cataclysm. So built into that I wanted to have a more personal, it's a more personal story. And I'd like the idea of having a more personal ticking clock as well. And so the son in the movie has type one. And now that's not to say the only reason why I gave him type one is to say, oh, that'd be a cool narrative device is to add yet another ticking clock. But it also quite honestly, it just, as I said, at the beginning of this long winded answer is that it gave me You know, I've been wanting to do it for a while, you know, Kerri and I have been together for a very long time. So I've seen type one up close and personal for a very long time. And, you know, I think it's kind of, it's somewhat misunderstood, if not even known condition by a lot of people. So it was, you know, I'm kind of hesitant to use the word educate, because I'm not really trying to do that, but maybe just shine a light on it a little bit. And, you know, this was a, an opportunity to do that on a, I guess, a large screen, or one of your house. Stacey Simms 6:08 But I'm really curious, as you said, This isn't a movie where you're going to take time to actually do a formal education about type one, just as I wouldn't expect a formal education about a comment hitting the earth, and you know, what would happen, but you do have to explain these things. And I'm curious, you know, how do you work that in, you know, I assume we'll see things like injections or a pump or something like that. But was it difficult to kind of write it into the fabric of the story without, you know, Hey, everybody, we're gonna talk about diabetes. Chris Sparling 6:34 Now, it was, to a certain extent, because, you know, as you will know, it's diabetes, you know, it's sometimes can fly a bit under the radar. You know, I recently, it was kind of bizarre to do it. But it's fun, I did it, I did an interview with Kerri. And so we were talking like you and I are talking now. And as I told her, then, and I don't always know when she's low, I don't always know when she's high, you know, things are beeping and everything else. And sometimes she takes on a certain characteristics, when that's going on. And I do know, or if I see you're sweeping a bunch of juice or whatever, but like, but sometimes I just don't know. And so to kind of to represent that on screen is difficult, because if you try to go too far in one direction, or the other, it may start to feel very false and forced, and almost cartoonish. And I say 100%, didn't want to do that. But if you go too subtle with it, which diabetes can sometimes be a rather subtle condition, you know, at times, and, you know, if you do that, then it just, it doesn't register for the audience at all. So to kind of dramatize that, what I did was I had the boy, the young boy in the in the movie, let's take one, I gave him a pump. And, you know, to kind of develop a shorthand with the audience, right out of the gate, there's a scene early on in the movie, where Gerard Butler who started in the movie, he's seeing that basically, he's been away, he, his wife had marital problems, and he's kind of they're trying to work it out, he and his wife now and he's coming back, he hasn't seen his son in a little while. And you see, there's a nice tender scene between him and his son, where he notices the pump, the insulin pump, and he says, you know, you know, basically, there's something to the effect of I do like that better than the shots. And you know, just kind of getting it across to the audience, someone who may not be as familiar with it as you are. Or I might be what's like, oh, okay, I get, you know, I can understand that you're certain things, I have a certain amount of knowledge about diabetes. So yeah, it's not, it's small things like that along the way, I've no doubt there will still be things that some people watching, it won't fully kind of hook on to, and they won't fully get. But at the same time, I think there might be elements of it that people watching might be like, Oh, I had no idea. I had no idea that having diabetes would require something like that. Or even to say, the immediacy and the importance of insulin, it kind of where I spoke earlier about this massive macro level existential threat that they're facing. But they still have to get to these bunkers in Greenland, if they're going to survive. And there becomes a situation where this boy get he needs his insulin, because he gets separated from it. And it's like, well, yeah, the large scale goal here remains, but if we don't get you there safely, and again, I mean, just maybe telling maybe to a certain degree, informing the audience who might not know that insulin is not just something like, again, you take it whenever you don't know, I don't know what some people might think, like, you just take it once in a while you take it as you feel like it or I don't know, whatever the misconception might be, Stacey Simms 9:09 that we eat a cupcake, you need your insulin, right? (laughs) Chris Sparling 9:12 Yeah, yeah. I think if nothing else, maybe it'll open, not open people's eyes. That's actually wrong, especially maybe just kind of illuminate the topic a bit for some people. Stacey Simms 9:19 You know, again, I said at the beginning, I'll probably say a few times. I know very little about the industry, the movie industry and and what it takes to write a movie and produce and get, but I would imagine that and you've done projects before, where you've been involved in every step, right, you've written and then you've produced it, or you've been more involved. But with this, you you wrote it as my understanding, and what happens after you kind of hand off your baby because the director can change things, right. The actors have to change things. I guess I'll ask it both ways. First about the diabetes. Did they get it right the way you had hoped? And then we can talk about the movie? Chris Sparling 9:53 Yeah, well, I mean, yeah, I mean, first, even before diabetes, yes, that always happens. I mean, I've directed movies, I produce movies, all of which have been ones that I've written. So, you know, in those instances, I have obviously quite a bit of control over what the final movies gonna look like in this instance, having just written it. In other movies I've only written, you know, there's always an understanding that when you hand it off, essentially, you know, your depends on the project, quite honestly. I mean, sometimes just as the screenwriter, I am still very much involved with the production because the director or the producer probably see the value of having the person conceived it but but with this, I was involved but not see, like, on a day to day level, that's for sure. Look for the diabetes of it all. You know, I was happy with it. And I was, there were a couple days when I was on set. And, you know, there was I just happened to be there. One of the days they're shooting a scene in in the grocery store and use the sons, they're shopping with his dad, and he's like, Hey, can I get some juice in the dad's like, yeah, sure, go get some. And I remember talking to the directors like Rick, listen, he's like, I was like, you know, my wife generally doesn't drink juice for fun. I'm not I mean, again, I know. She perfectly well, I should be no problem. She could if she wanted to just you know, but I was just I became so in a way over protective of getting it right. And it being portrayed, right, because the last thing I wanted to do was to finally incorporate diabetes into a move your mind and for it to end up being portrayed wrong. But in talking with Rick, he was like, No, no, it's cool. You know, I guess he was, meanwhile, he had his friend on speed dial who was the parent of a child of type one. He's like, No, no, I talked to them. I've consulted with them over and over again. And they said they get no, they let their child have juice if they want it and everything else I was like, and like, on an intellectual level, it made perfect sense to me. But I was I mean, I was kind of like waiting that we hold on a second rate bumps, you know, so to fully answer the question, I think the director, the producer was I think they did a really good job. I think people watching the movie and will it be 100%? Right? I don't know. I mean, people might see it and say, Hey, I don't know if I agree with that. Or not. But everyone's situation in their approach is different. But I could say if you kind of widen the aperture a bit and take a look at it, I think people are gonna I think it does it handles it accurately. For the most part. Stacey Simms 12:02 I would have been like Gatorade zero, and then he can get a juice box for later. Chris Sparling 12:08 Yeah, I mean, that's I'm saying like, everyone's situation is different. Right? Stacey Simms 12:11 So let's talk about movies for a little bit. Was this your dream job? Was this something you always wanted to do? Right back to Chris in just a moment. But first Diabetes Connections is brought to you by Dexcom. And you know, I've talked about this before, but it's still striking to me when Benny was a little, you know, you give your kid a bath almost every single day or he goes swimming all summer long. And I always noticed his fingertips, you know, they were poked so much, that they were full of these little holes up and they just looked really awful. Especially when they got wet. It was almost 16 I'm not looking at his hands very much anymore. But man, when we go to the endocrinologist and Dr. V looks at his fingertips, they are normal. We've been using the Dexcom for so long. Now it was seven years. And with every new iteration, we have done fewer and fewer finger sticks. The latest generation the Dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing the 10 finger six a day we used to do chasing my toddler around, it makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If your glucose alerts and readings from the G six do not match your symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. learn more, go to Diabetes connections.com and click on the Dexcom logo. Now back to Chris and he's talking about whether this is still his dream job. Does he still love working in the movies? Chris Sparling 13:38 Yeah, 100% I mean, I started like eons ago, I started as an actor. And I lived in Los Angeles for several years doing that. And while I liked that, and sure, it would have been great to have ultimately done that it just wasn't really it's a really, really tough racket, trying to be doing the struggling actor thing. You know, it's fine when you're really young doing it. But at a certain point, you just feel like, wow, I have like no agency, I've almost no control over my future. You know, it's just really, really tough. So I just kind of felt I needed a little more control over my career. And so yeah, so to be involved in this industry in any capacity was was always my goal. Stacey Simms 14:16 How does it work these days? I mean, people will say, well, you can write from anywhere. But I've got to imagine that the whole industry, if not moving slower, shut down. I mean, 2020 it's been a mess for everybody. But from a filmmaking standpoint, how did this even get done? When was I guess we'll talk about Greenland, but in general, like, how are things getting made right now? Chris Sparling 14:36 I mean, yeah, Greenland was all written, shot well before the pandemic, but at the same time post production, it got shut down for a while in post production. So it didn't get completed, completed until in the midst of the pandemic, you know, and then as far as the release of it, yeah, I mean, it's supposed to be in theaters two or three different times, then take a push back and push back. But separate from that, you know, as 2020 is going on. I've actually had two other movies shoot during the pandemic, I just had one that wrapped two days ago in Albuquerque. And so for me personally, it's been a, you know, again, I mentioned earlier, but I can't complain people have like real, you know, things there, especially during 2020 people have had really awful things that they've kind of faced, I'm not certainly gonna, I'm not going to complain about having a movie pushback or not being able to visit set because of COVID. But yeah, I mean, it's been a bit of a bummer. That's, you know, I'm still human, like, it was a bit of a bummer to, to have two movies that, you know, I wrote and produced, and I was basically producing from, you know, one was an Ontario as a movie called Lakewood that I did with Naomi Watts. And then a movie that I just did born in Albuquerque that wrapped two days ago. And it's like, I was watching real feed, like real time feeds from the camera, in my house, in my home office. And my situation of you know, being very protective in particular carry, you know, having type one, and so we are, we're very, very locked down here and the COVID of it all. And so me going to set me being on set just wasn't really an option for me. So Stacey Simms 15:58...
/episode/index/show/diabetesconnections/id/17193824
info_outline
Stacey & Benny: What We've Learned After 14 Years of Type 1 Diabetes
12/08/2020
Stacey & Benny: What We've Learned After 14 Years of Type 1 Diabetes
Benny sits down to talk about everything from which diabetes task he hates the most to what he loves about the diabetes community and much more. Stacey's son was diagnosed with type 1 in December of 2006, just before he turned two. This week he answers questions about Dexcom and pump site insertions and shares his excitement about turning 16 and (hopefully) getting his driver's license soon! In Innovations, we talk about the new Hello Dexcom program ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, 14 years ago this month, my son was diagnosed with Type One Diabetes. Benny joins me to answer a bunch of questions including how he psychs himself up for every inset and CGM change. He says, you gotta be fast. Benny 0:41 Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed and if you like, leave the inset on your body. Like you're holding it there like, more and more you get in your head and like, this is terrifying. Why am I doing this? Stacey Simms 0:54 Even now after all these years? Benny 0:56 Oh, yeah, like if I don't do it in the first like, 10 seconds I have it on my body. I have to like take a minute. Stacey Simms 1:01 He also shares what he remembers about moving to more independence. He was diagnosed before he was two. So it's been quite a change for us over the years. We also share what makes him nervous, what makes him happy, and a lot more In innovations this week, a new program called Hello Dexcom may have more people trying this CGM. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am always so glad to have you along. We aim to educate and inspire about diabetes by sharing stories of connection. As I have said my son was diagnosed before he turned two my husband lives with type two diabetes. I do not have diabetes. I have a background in broadcasting and local radio and television news. And that is how you get the podcast. I apologize right off the bat. My voice is a little rough this week. I have had some kind of lousy cold since Thanksgiving, I got checked for everything. COVID, strep, blah, blah, blah. It's just a regular old virus. And I don't feel that bad. But I probably don't sound that great. So I apologize for that. It really is hard to believe that 14 years have gone by. I remember that day like many of you do the diagnosis day, like it was yesterday. I've told a lot of stories about that day, I was working in radio, our lives were so different. My kids were so tiny. Some of you saw the photo I posted in the Facebook group of Benny and you many of you met him when he was tiny. And it's got to be jarring because I don't share photos of my kids all the time on social media to now see him looking so different. And he's 5’11. I mean, he's working out all the time. And we talked about that in the interview. It's just amazing, right? You parents know you you hear your kids in the kitchen and you look up expecting to see you know, your seven year old daughter, and there's this 19 year old woman. What are you doing in my house? All the cliches about how quickly it all goes. But I'm always happy when Benny comes back on the show and answers questions that you submit questions that I have. It's amazing for me as his mom and it's become quite a time capsule. I think as we'll look back in years to come, and I hope it's helpful or maybe entertaining for you all. So we will get to that in just a moment. But first Diabetes Connections is brought to you by One Drop and I spoke to the people at One Drop and I was really impressed at how much they get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check when dropped diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo. If you've listened to this show at all, you know my son Benny was diagnosed just before he turned two back in 2006. So that makes 14 years of type one in my house. We've done shows with him before In fact, when we marked one decade with type one, I interviewed my whole family. I will link that episode up if you'd like to go back and listen, I talked to my husband and my daughter and got the sibling perspective, which was really eye opening for me. And I talked to Benny, which four years ago he sounded quite different. I have been told that Benny and I are kind of quick, we may talk in a bit of a shorthand when we're together. So listening to this interview, you should know just a couple of things. Geoffrey we mentioned is a diabetes camp counselor who is terrific. He's a great friend. We both love him, no matter what we say here. Sorry. Geoffrey. Benny mentioned some issues with his tandem pump. They are being wonderful about this. And by the time you listen, it's probably all resolved. But I will tell you a bit more about that after the interview, Benny and I get a little silly. I don't know if everybody appreciates that But enough of you have told me that it's okay to leave in. So I did. I did take out some really over the top ridiculousness, but I put that in at the very end of the show. So you can listen if you want to, like, Alright, we start off with Benny, rummaging around my office. So I sent you into my closet to find a mic, pop filter. And what did you come out with? What is that? Benny 5:21 It's a USB hub. And what does that do? basically turns one USB slot into three or four. Stacey Simms 5:29 I remember buying that because I thought I would use it at conferences, but it didn't really work out that way. Benny 5:34 Well, I mean, your computer has, I mean, I guess enough. Like it's not a one of the Mac's that have one USB, this would be very useful for that. I do not have one of those, but I will certainly find a use for it. Stacey Simms 5:46 All right. So how are you? Benny 5:48 I'm great. How are you? Stacey Simms 5:50 I'm great. Oh, my goodness. So as we are sitting here, this is 14 years of type 1 diabetes. Today, this is your actual diversity is today. Benny I’m such an old man Stacey Simms Today's the Saturday that we went down to the hospital in Charlotte. And then later that night, when I was freaking out, you put your arm around me and you said Benny it’s gonna be okay, mom, Stacey Simms you said it's gonna be okay, mommy. Yeah, that was tonight. Benny 6:12 I'm an old man. I'm so old. That's wild. I don’t remember any of that. Stacey Simms 6:15 What's interesting, too, is we started your Dexcom on Christmas Day. 2013. So you had just turned nine? Yeah, or you were about to turn nine. And that's we started your Dexcom you must remember that. Benny 6:33 And we were at grandma's house in the big screen room, Unknown Speaker 6:36 right? Like that movie theater room. Benny 6:38 And you were both with me. I was like, freaking out. And dad was just like, Alright, we're doing it wrong. And I was like, that was terrifying. Let's never do that. Again. Stacey Simms 6:49 That was the old I was gonna say G5. But it was the G4. It was a G4 flat. No, it was a G4 pediatric which had the same inserter as the G5. What I wanted to ask you about was. Stop. You are impossible we need to do this on video one day. See, you've been doing that, trying to like eat the mic three years old, gross, fine. Well, you couldn't find any pop filters, because every time I talk to you I have to get a new one. So I figured you don't have a lot of like reflections with diabetes. we've, we've asked you some of these questions before Benny 7:29 and I'm not the best at answering them. Stacey Simms 7:30 Not quite a I'm not the most reflective person a meditative Sage if that's the right way of putting it. But you do have a lot of good things and wisdom to share. So I thought we'd take a different tack this time. Okay. All right. So here are some dumb questions. Unknown Speaker 7:45 We love them. Stacey Simms 7:46 And you have done your own will say, you have done your own pumping sets and Dexcom insertions I'm gonna say 2 to 3 years now I've kind of lost track, but it's been a long time. I can't remember the last time I did one with you. Which is worse, pumping set or Dexcom Benny 8:02 Oh pump? For sure. Why? Tell me about it. Because the Dexcom is a little before the G5 and G for pediatric were terrifying. Yeah, they were like giant syringes and like you could feel the needle go in and like all you could feel it move the entire time. Stacey Simms 8:17 Do you remember? That definitely let you finish the actual question. But do you remember the first time Geoffrey tried to get you to yesterday or so? Benny 8:25 Are we friends for life? Stacey Simms 8:26 We were at I think a Jdrf conference. It might have been a friend for life conference. But I think it was local. Because Geoffrey was there from our Benny 8:34 local. Yeah, we were in the hallway outside the conference room. And he was like you either do it yourself or it's not happening. And that's actually how he made me do my first inset too. But that was that camp. Thank you, Geoffrey. You have traumatized me. He said the way he did it was just push up against the wall. And then like with the white part to go in, and then the clear part. he'd pull it up by himself. And I'm like, that's not how I would do that. And I was I was utterly terrified. I just remember walking up. Oh, you had I had it on my arm, right? And it was like the whole thing was stuck on my arm. And I was just like running around because I will I'm not doing this. Stacey Simms 9:07 Yeah. If you're not familiar with how the G5 used to work, or the old Dexcoms you'd have to, it just looked like almost like a giant syringe a surrender, right? So you'd push down on one part and then pull up on one part. I'll put a video link in the show notes. So you can check that out. But it's very hard to do by yourself. So people got very innovative and use door jams. And well Benny 9:26 I actually did it by myself. I mean, I got to the point where I could you just got to stretch your fingers. Stacey Simms 9:32 But also you couldn't really do in your arm by yourself. Benny 9:34 I couldn't I got to the point. Yeah, excuse me. Um, it was just really fast because I'm so like most people like did it kind of slowly and then like pull it up pretty fast. But like I did it like all in one smooth motion so that I could actually do it with one hand on my arm. No, because I'm just that I don't Stacey Simms 9:51 remember. I think when Geoffrey did it that day though. We wound up just removing it. Yeah, we just took it off because it was your conference with it sticking out of your arm. Unknown Speaker 9:59 I mean Sorry to laugh. Stacey Simms 10:00 I was like, You were scared. I was terrified. There's so much that you guys have to go through. That is so scary and not fun. Unknown Speaker 10:07 So Geoffrey bullies me. All right. Unknown Speaker 10:08 I love you, Geoffrey. Stacey Simms 10:11 You said the inset hurts more now. Benny 10:12 Yeah. Stacey Simms 10:13 So how do you Wow Tell me about your procedure. Oh, you do it? Benny 10:16 Well, the Dexcom. But let me get back to that. Now it's just a button. And it's not scary at all. Like you don't see the needle. You don't see anything but the bandage sticky part and the big orange button. It looks kid friendly. Like it doesn't look like it's gonna stab you. It's just a button. But the the inset like you can see everything. You have to like a bit. You're basically looking at the needle the entire time while you're unwrapping it. And let me just say that the inserts are way harder, way harder to unwrap than the decks comes. Someone should get on that. I'm with you. And like the spring mechanism, like you have to like pinch down on both sides. That's like, I just adds the aspect of like you are stabbing yourself. Stacey Simms 10:59 Well, it's interesting, because you know, you have done more shots than people. Most people who use a pump will have done well. I don't remember any of them. You just did. You stopped in March. Oh, Unknown Speaker 11:09 wait, Stacey Simms 11:10 did that Tresiba. Oh, that you see. Unknown Speaker 11:13 Let me rephrase. Benny 11:14 When I think of shots, I think of like the the one with the orange test Stacey Simms 11:17 syringe shots like the old Oh, yeah, that's true, because you were two and a half when we stopped that. Okay. But what I mean is, here's my question. As a person with diabetes, who has sharp objects in you quite often, it must be so strange to have to insert them and as you're saying, You're watching the needle the whole time you're wrapping the inset unwrapping the inset, and then you put it on your body. Isn't your body kind of telling you like not a good idea? Benny 11:41 Yeah, no, I mean, absolutely. Like, it's kind of like sports. Like if you don't do it at that moment. Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed. And if you like, leave the inset on your body. Like you're holding it there. Like Like, more and more you get in your head and like, this is terrifying. Why am Stacey Simms 11:58 I doing this? Even now after all these years? Oh, yeah, Benny 12:01 like if I don't do it in the first like, 10 seconds. I have it on my body. I have to like take a minute. Stacey Simms 12:07 That just makes sense to me. Because your body is never going to say yes to a needle. It's always going to want to send your body's not down. Benny 12:15 This is not a good idea. crazy person. Stacey Simms 12:18 Does the coughing still help? Benny 12:19 Oh yeah, I do it every time. I don't know if I would need to anymore, but I still do it every time Stacey Simms 12:26 and we should explain when you cough apparently you kind of confuse your body for minor pain. Benny 12:31 I think it just distracting. Like I think if you like the whatever it is like the nerves receptor pain, whatever. Just focus on your lungs for like, a quarter of a second. And that's when the needles going in your body. Stacey Simms 12:43 So can you now cough and stay still? Like that's the one thing that makes me nervous when I hear you coughing it's like picture you moving and then the needle getting Benny 12:49 I never moved that much. It's like a little flinch. Like if your cough right now it's not like you're not gonna move six feet. We need a camera Unknown Speaker 12:58 camera. He just like jumped off his chair. Maybe another time. Stacey Simms 13:07 Right back to our chat in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen. And almost everyone who takes insulin has experienced a low blood sugar. And that can be scary. A very low blood sugar is really scary. And that's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar, Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with a pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. People ask me a lot. How did I get you to do your own insets and Dexcom stuff? And I don't really think we had a method. Yeah, Benny 14:00 I don't. I think eventually it was like, I think it was a mix of us saying like, I think we should start doing this and me being like, I should start doing this. It wasn't like one of us was like this needs to change. It was both of us kind of like we can't if we want to Stacey Simms 14:14 I seem to remember in fifth grade your inset coming out once and me saying you're fine. Do it yourself. Benny 14:21 I don't remember that. Stacey Simms 14:22 Well, I'm glad because I felt kind of mean at the time. But me but you did it and you were really excited about it. And I think it's also as you got more independent. You didn't need me or want me hovering over Yeah. No, but you don't mean like when you used to go to Birkdale with your friends, and we would go places and do things. You know, like in seventh grade, you'd go to Burke does our local shopping center and you wouldn't if your insect came out or had an issue with like, you didn't want your mommy coming to your rescue. Well, I would have been happy to I know. But I think that helps too. So what It's a tough answer, though, because there really isn't an answer is how you did it. Benny 15:03 Yeah, it's kind of just um, and kind of just happened. Stacey Simms 15:07 I think the G6 made that easy too, because you had been doing the G5 as you said by yourself. But when I forgot we were on the G6. Benny 15:13 How did you pretty me forgot? Like I forgot. I thought it was like, I Stacey Simms 15:17 don't know. Am I keeping you awake? I'm tired. You are beat tonight. workout? Yeah, well, we're gonna talk about that too. But when we switch to the G6, and there's that crazy video of you getting all geared up to do it in May of 2018. We got the G6 and you and I did a live Facebook, where you inserted for the first time was that on the couch? I think I remember that was the kitchen table in the old house. Unknown Speaker 15:38 Oh, I do remember that. Stacey Simms 15:40 And that after that you I mean, you did that one yourself. And then it was easy. So I never did it again. I mean, I never did the G6 period ever fancy. Yeah. Well, it's weird. After having done everything for you for so long. Benny 15:52 It just tell us. You said you can't do it anymore. You said you can stab your son anymore. Unknown Speaker 15:57 Oh my god. Hey, Benny 15:59 tell me. So Stacey Simms 16:00 tell me about working out. So you your wrestling practice is sort of back pain. And you've been outside today. So much fun. Benny 16:08 Working out in masks outside in 50 degree weather is the best thing...
/episode/index/show/diabetesconnections/id/17073764
info_outline
"What is the Community Buzzing About?" D-Data Exchange 2020 with Amy Tenderich
12/01/2020
"What is the Community Buzzing About?" D-Data Exchange 2020 with Amy Tenderich
The DiabetesMine D-Data Exchange is a great time to catch up on the latest technology and get a sneak peek at what’s coming. This is the conference where #WeAreNotWaiting was coined in 2013, which almost seems like ancient history now! We talk to founder Amy Tenderich about what's new and take some time to focus on their effort to reach more diverse voices. In Tell Me Something Good, a big diaversary to celebrate.. Stacey's son marks 14 years of type 1 diabetes this week. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen the first premix auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, the DiabetesMine innovation days is always a great time to catch up on the latest technology and get a sneak peek at what's coming. This is the conference where we are not waiting. The phrase was coined in 2013 which almost seems like ancient history now Amy Tenderich 0:44 stuff that seemed like such a pipe dream at the time like this whole idea of a closed loop system it was like kind of eye roll or like but now we have a very viable do it yourself. Homemade pancreas closed loop system which I'm using By the way, I've been looping now for quite a while and it's a game changer. Stacey Simms 1:00 That’s Amy Tenderich, founder of DiabetesMine who puts this conference on twice a year. This time around. There was also a big focus on inclusion and representation. Lots of info share In Tell me something good a diaversary to celebrate 14 years of type one in my house. Betty was diagnosed the first weekend of December in 2006. And I just remembered a funny story from that week that I haven't told before. I was always the worst. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. As I said in that intro, my son was diagnosed with type one right before he turned to 14 years ago this week, my husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting in radio and television, local news. And that is how you get a podcast. I'm going to be talking about Benny’s diaversary later on in the show, I will tell you a rather silly story that I just remembered about our first weekend home from the hospital. So about a week after we got home, and we went out we had theater tickets. I will tell you that story later on in the show. But stick around. It's a funny one. I think it just kind of sets the tone for how we manage diabetes and continue to this day. Oh my goodness. I also want to let you know that friends for life is having another conference of virtual conference. And if you are listening as the show is first airing friends for life is happening this Friday, and through the weekend, December 4 2020. And along with the incredible educational opportunities and the wonderful social stuff that they have great meetups, I am also doing my annual game show I do a version of NPR is Wait, wait, don't tell me, which is a really fun game show. If you've ever listened to it. I do Wait, wait, don't poke me and I have taped that and we will be airing it and premiering it this Friday. So definitely come by and please check that out. I will link up all the registration information for friends for life from the wonderful folks that children with diabetes, just go to Diabetes connections.com and click on this episode. You know every episode has pretty extensive show notes where I link up information. And I also put a transcript now for every episode in 2020. And we're starting to work backwards. So hopefully eventually, I'll have a transcript for every episode of the show. Thanks for your patience on that. All right, talking to Amy Tenderich from DiabetesMine in just a moment. But first diabetes Connections is brought to you by One Drop in One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drop glucose meter looks nothing like a medical device. It's sleek, compact and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more. My guest this week can be summed up I think in the motto of the conference. We're about to talk about learn, connect, collaborate, Amy Tenderich was diagnosed with type one as an adult in 2003. And not long after that she started the website DiabetesMine, which is a terrific source of news and information in our community. Seriously, if you're not reading it, I'll put a link in the show notes. Make it a bookmark. They even say that anymore. You know, put it in your reading list. They say that anymore. Make sure you check out diabetes mind because all kidding aside, they do a tremendous job on reporting in depth news information in our community if you're interested at all in technology if you want to learn personal finance stories to they do that it's a great deep dive and I rely on it for a lot of information, I share her on the show, of course, I always credit them. But in 2013, Amy started organizing the D-Data exchange twice yearly events that focus on technology and breakthroughs. This year, Amy added topics about diversity and representation in the diabetes community. It's something she was already working on, as you'll hear before, the events of this year brought it to the forefront for many people who maybe hadn't considered that before. But maybe it was already on it. Lots of information here and look forward. Of course, it's always great to catch up with Amy. Amy, welcome back. Thank you so much for joining me to talk about D-Data. I really appreciate it. This conference is always so interesting to talk about. So thanks. Amy Tenderich 5:46 Oh, thank you for having me. Stacey Simms 5:49 first question really has to be just the difference this year in terms of making everything virtual. You know, I was in some of the conference presentations, I have to say this was a cool looking online conference. Do you mind share just a little bit about how were you pleased the way it went? I know at the beginning of the year, it must have been kind of crazy to regroup? Amy Tenderich 6:09 Absolutely. It was it was been a big learning curve, obviously moving from in person to online, no matter what kind of event you do. I mean, first of all, there was this, oh, my God, I'm in the events business. And now we have COVID. And you know, what's going to happen? And there was some question about whether people would still be interested. But I feel like I found that people are really anxious to connect, because we're not going to all these in person events. You know, most of us feel like we're just sort of out there some kind of juggernaut on our own trying to keep up just by clicking on links. And so having a conference that allows people to connect, I think is you know, something that people are still really looking for, we had to do it the first time for our June event, because we do these D-Data events in June and then in the fall. And so you know, that was literally starting from scratch. Our event, as you may know, is sort of like a leadership forum, we always kept it at about 150 people Max, try to keep it somewhat intimate, so that it really put an emphasis on collaboration and interactive sessions. And you know that the networking part of it is really important. So we thought, how can we recreate that. So it's not just people sitting and watching, you know, one presentation after another, especially when everyone's doing so much of that these days on zoom. So I've been working with the same event manager, actually, for years, a lovely woman who, out of San Francisco, who helped me find this platform that is really, in fact, they do use it for much larger events up to thousands of people. But the thing that's so special about it is it kind of recreates the experience of sort of walking into a live conference you like sit down at a table, and then you're able to immediately see and talk to the people who are at your table. And if you jump over to another table, then you're talking to that group. So it kind of looks like a zoom breakout room. But the idea is that it's you know, it's sort of oriented by table. And then what if you want to work together with the people at your table, there's even this whiteboard function that lets people have kind of a little sandbox to play in. And so that we do, again, a lot of interactive stuff, where we try to get people to talk with the group at their table and brainstorm things. So they were able to use that sort of shared space where you can draw pictures and you can post links and and you know, get creative. And you can actually capture whatever your your table does there as a, you know, an image and save it for later if you want. So it really it has this great functionality that allows both live presentations, pre recorded presentations, and then a lot of interactivity. Yeah, so again, it was a big learning curve. You know, it really helped me that we had done this once in June. So going into our two day event. Now in the fall, I had a better I didn't have to kind of recreate that whole wheel of just understanding how the online platform works. You Stacey Simms 8:48 know, this conference is so well known, as you said, leadership technology, things come out. And we'll talk about this that, you know, years later come to market. But one of the things that you focused on early on and or even really, before the conference was this survey and discussion of representation. Amy Tenderich 9:06 So yeah, what happened there? It's actually I'm kind of proud of myself and this was prior to the whole, you know, uprising around George Floyd and the big sort of, you know, visibility of the Black Lives Matter movement back in January, I was talking with Cherise Shockley and a few other people and said, You know, I feel like we should have a panel at our event to kind of delve into this I feel like this is a it's sort of something that's a little bit on the margins we talk about every now and then but this is so not solved, but I feel like people of color are really not represented and and Sharif was all over it said absolutely. We need to have this conversation and started recommending people and so I had already spoken to Mila Clark Buckley, who you may know and a few other people reached out to area Lawrence. And then of course, everything kind of exploded and it was like Okay, wow. And so, in our planning sessions, I basically kind of convened this group of advocates of And I said, Listen, you guys, I want to have a session, I think it'd be great to have a live kind of Roundtable. But, you know, what else can we do? Or how do you guys want this to run? What do you think would be meaningful? So what was so cool is that that group actually drove the whole content of it. So they said, Listen, we're happy to come and be on a panel and talk. But you know, we, again, people of color are not a monolith. Right? They can't represent everyone. And they sent me to get more voices involved. So they had the idea, you know, can we do some kind of research? Can we do a survey so we can gather, you know, input from a larger, you know, swath of our community? And they also said, What about a video? What if we got people to, you know, because we had done this before for diabetes mind with our winners, and you're familiar with the Stacey, where we have these people who are patient voices winners, basically applied to have a scholarship. And then if they won, we flew them out to Northern California, and put them up to be part of the event. But in years past, we'd had those winners each do a little snippet, and just them talking about, you know, who they were and what their sort of advocacy soapbox was, was in the area of diabetes, if you will. So the idea was to do something along those lines, where we ask a larger group of advocates of color, to just say a few words about what they do and about their thoughts on you know, being a person of color with diabetes, you know, what's good, what's bad, what would they like to have changed, see change, I said, it's completely up to you guys. So I don't know if you got to see that. But we created this compilation video that started off our session. And it was really impactful, because it was just people saying, their bit, you know, what's disappointed them or why they do the work they do, or what they would like to see change. And it's just what, you know, I can't I talked about this session is sort of unveiling what's been left unsaid for too long. You know, I think that a lot of this was kind of going on behind the scenes. And some of these people of color also told me that in the past, they kind of if they had a negative experience, they would kind of brush it off, they would just say, Oh, it's kind of a one off, it didn't. It's not necessarily racism, it's just, you know, I had a bad experience. But when they start to connect with each other and share these stories, they realize there's a lot of commonalities, you know, of getting brushed aside of being misdiagnosed of sort of not being proactively told about all of the latest, you know, technology options, because maybe a healthcare provider would sort of assume that they weren't going to be the ideal candidate for a pump or a CGM or something cutting edge. So, you know, it seemed that there were some themes. And when we saw this group of advocates, each recruited more people in their community. So we had a team of about 12 people who actually helped craft the survey questions and vet the survey, and then helped us get it out there to the community. So we had about about about 207 people who completed the survey, there's always some people who start and don't complete answers. And I did a whole presentation on sort of summarizing the results, which is also a video that's posted online that we'll be sharing with people. But yeah, it was just so eye opening. So so many of their concerns are similar to anyone with diabetes, right? They're worried about costs and access, and you know, finding a physician who's empathetic and, you know, who treats them as you know, as a partner in their own care, and all those things. I mean, those are things that I would say are across the board for anyone with diabetes or issues. But what also became very clear that they do not feel represented, we got very strong results that people said, both in marketing and in educational materials, they don't feel represented, they need to see more people who look like them. And that's everything from you know, skin. And he says to, you know, just, you know, seeing someone who looks like me, who might actually use that product. Stacey Simms 13:43 Wow, I mean, so much going on there. And I know a lot of people were posting that they were really excited to not only be involved in it, but to see it. And I always hate this question. But what comes next for something like that? Amy Tenderich 13:55 Is the million dollar question. And that's actually one of the things where you feel like you're sort of a victim of your own success because you have an event and people say, this was so great. What else you gonna do? I'm like, What do you mean, I'm still recovering from this. Stacey Simms 14:12 Back to our interview in just a moment, but first Diabetes Connections is brought to you by Dexcom. And when you got a toddler with type one, you do hear rumblings for a long time about the teen years, you know, hit us full force a little bit earlier than most and I'm so glad that we had dexcom Benny's influence started going way up around age 11. He's almost 16. And it has been an absolutely remarkable transformation, I think is really the only word for it. He's so much taller, everything's different. I mean, I need to tell you what puberty does, but along with the hormone swings, I cannot imagine managing diabetes during this time without the Dexcom continuous glucose monitoring system. We've been able to react more quickly to highs and lows, see trends, adjust insulin doses with advice from our endo. I know using the Dexcom G6 has helped improved Benny's a one C and overall health, if your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Now back to Amy, where I have asked her what's next. Amy Tenderich 15:19 So I don't know. But you know what the fun thing is, I mean, not only the fun thing, but I think the important thing is to not try to decide that too soon, the world is changing. And these events are always about kind of what is timely and what you know, we try to sort of take the temperature of, you know, what is boiling up hottest in the in the patient community and in the industry. So especially with our D-Data day, with the technology side of it, you know, we try to let the dust settle from the existing event and see where things are going. What are people talking about? Is it suddenly that smart pens are all coming out to market? And people are buzzing about that? Is it some of the latest trials for the closed loop systems? You know, is it sometimes it was like accuracy of, you know, cgms, that became like a big hot button. You know, obviously right now a lot of it's just about affordability and access, it's an always an ongoing issue. But we really try to and again, especially for the day to day I try to check in with the community, you know, I'm a conduit, but I'm not one of the hardcore developers, or the people who work on loop who make these incredible tools. So I always check in with them and say, you know, what is the community buzzing about what else is you know, who's working on something new and cool? How are people feeling about the latest commercial products have come out, or a lot of people you know, chattering about that they have a lot of input, you know, and just try to sort of find out what's happening out there and then address those things. And, you know, really keep it fresh and timely. So that we're really having conversations about the things that are like currently on top of mind, Stacey Simms 16:49 it's so hard to predict, certainly, right, what's going to take off because you always have devices and people at this event that are as you said, so cutting edge and, you know, certainly the DIY crowd is always well represented. So it's hard to figure out what's really going to hit Were there any products or standouts, I saw a non invasive CGM of some kind like a bracelet that was there. I...
/episode/index/show/diabetesconnections/id/16998860
info_outline
"He's Why I Have My Vision" - Alecia & Marty Have a Friendship Forged in Diabetes History
11/24/2020
"He's Why I Have My Vision" - Alecia & Marty Have a Friendship Forged in Diabetes History
Clinical trials are incredibly important for research, but the people who take part don't usually get to meet anyone they've helped. Marty & Alecia are a very special exception! Marty Drilling took part in a clinical trial in 1974 that later helped save Alecia Wesner’s eyesight! We’ll share their remarkable story and talk about how much progress has been made in treating diabetes eye issues. In Innovations this week.. a new partnership in the closed loop space. We'll talk about Lilly and Ypsomed This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, taking part in a clinical trial is incredibly important, but it's often thankless you don't expect to meet the people you might help years later. That's why it was remarkable when Alecia met Marty, Alecia Wesner 0:40 the people who tested that technology, I'll never meet them and tell them but you know, you're some that I can still see or the reason I have the strap is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either left or didn't or they lost their life Marty Drilling 0:56 while she was moved because I was still alive and she'd been told we all died. I was just moved to St. meet somebody who had benefited and certainly appreciated. Stacey Simms 1:06 Marty Drilling took part in a clinical trial in 1974 that later helped save Alecia Westerners eyesight will share their story and talk about how much progress has been made in treating diabetes eye issues. In innovations this week, a new partnership in the closed loop space could bring a new pump to the US market. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. If you're listening as this airs, it is Thanksgiving week here in the US probably a Thanksgiving, like none other for many of us, but I hope you are staying healthy and safe. Of course on the show, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son Benny was diagnosed with type one right before he turned two, and he is almost 16 years old. This episode I think is a really nice one for Thanksgiving. It gave me a lot to be thankful for specifically, the amazing people in the diabetes community who lived through very different times, and went through these clinical trials to make things better for people that they assumed they would never meet. It's also a really great Thanksgiving story, because it's just one of these heartwarming, yeah, I got to admit, Alecia made me cry. Oh, my goodness, it was a wonderful story. So I'm really glad you're here, we also have some really good information about not just taking care of your eyes, but complications that can happen, what you can do about them and the progress that has been made. So if this is something that you have been worried about, I just saw a Facebook post from a young woman in her 20s with something very similar to what Alecia went through. I think this will give you a lot of hope. And some ways to take action. Quick reminder, my book, the world's worst diabetes mom is on sale through the end of this month, I think it makes a great holiday gift, you kinda have to sort of know who you're buying it for. You know, make sure if you're getting it for your mom, or your wife, that you let them know that you don't think they're the worst that It's me who's the worst, I could see how that could go kind of wrong, but just go to Diabetes connections.com. And you will see the book, scroll down a little bit. There's also a tiny little shop button at the very top, but the promo code is “November.” And that'll take $4 off through the end of this month. And that is plenty of time to ship it to you for the holidays. And I will sign it if you buy it off my website. I can't sign it if you buy it off of Amazon but it is there in paperback ebook and audiobook, okay to Marty and Alecia in just a moment. But first diabetes Connections is brought to you by One Drop. And it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the sleekest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime instantly share blood glucose reports with your health care team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strip subscription plans pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo. My guests this week were diagnosed a generation apart, but boy are they peas in a pod. I think Alecia even says that. Alecia Wesner was diagnosed in 1979 when she was six Marty Drilling was diagnosed at the age of four in 1953. I asked them to come on the show because back in October, I saw a Facebook post from Alecia talking about her virtual JDRF bike ride and here is what she said. “Today I ride to honor my friend Marty one of the original clinical trial patients of laser eye treatments for diabetic retinopathy He is one of the reasons I have my vision after many years of laser treatments in my 20s and early 30s. Thank you, Marty.” I had to find out the story behind this. So I called them up and brought them on. Quick note before we jump in, we are going to talk a little bit in this interview about eyes and eye surgery. I don't know about you, I'm really squeamish. Even though I've had LASIK, I have my own eye issues. If that is you, I promise I will jump back in with a quick heads up, I will warn you and let you skip ahead over that stuff if you prefer. And keep in mind we get to this late in the interview. But you should know upfront treatments have changed significantly from what Marty and even Alecia went through. So this is went through. So if this is something you need, this is an interview that should encourage you. It shouldn't scare you. Alecia. Marty, thank you so much for jumping on and sharing your stories today. I appreciate you being here. Thanks so much. Marty Drilling 5:54 You're more than welcome. Alecia Wesner 5:55 Thank you for having us. Stacey Simms 5:56 I admit, I don't know much more about either one of you than the Facebook post Alecia put out not too long ago, and I thought I gotta talk to these people. So well, you know, we'll get to that we'll talk about clinical trials and how you two met. But first, let me just set the stage a little bit. If you don't mind. Alecia, can you start by just telling us your diabetes story. You know, when were you diagnosed? Alecia Wesner 6:20 I was diagnosed in 1979. So I had type one for 41 years. I have, like you said been in a lot of clinical trials over the last six to seven years of my life, mostly in the AP space. And I live in New York City. I'm very active with JDRF. I'm a JDRF rider. And I've written many, many miles on a bike. Stacey Simms 6:44 And when you say AP You mean the artificial pancreas trials. Yes. And Marty, What's your story? Marty Drilling 6:49 Well, I was four and a half when I was diagnosed in 1953. So I've been living successfully with my diabetes for 67 years. My math is correct. And my first clinical study was the one that Alecia and I bonded over was my 1974. When I was in my final year of law school, I finally went to the Joslin clinic in Boston, and they said you've got you're going to go blind if you don't do anything. And they had the new laser surgery study going on through the NIH. So I was one of the original guinea pigs in that, and fortunately proved to be very successful. And I still have my vision 40 some odd years later. And when Alecia and I first met, which was just about a year ago, it was at a advocacy day on the hill in Washington DC. And I happen to mention I was a participant in that study. And Alecia immediately reacted, I had that too. And then Alecia, pick up the story from there because it was pretty amazing. Alecia Wesner 8:03 Yeah, please no Marty is downplaying this. So Marty and I, we spent an entire day together. And we're like two peas in a pod. And really like wooed each other side through this whole day through Washington running around and talking about diabetes and life. And one of the things that we talked a lot about Marty's destiny, a lot of questions about the 80 trials that I was participating in, and different pumps. So what I hadn't asked Marty was more of his diabetes story. So we were at Elizabeth Warren's office. And Marty ended up telling the story about his life of diabetes, but specifically about being in trials for retinopathy. And I got totally choked up, which I have now. I'm sorry. But in listening to him, I have spent a lot of my adult life advocating for clinical trials and clinical trial participation. And one of the things you know, I get to be on the stage and tell people about this is my experience. And that's why we need to push these things forward. But one of the things I always show are pictures of my eyes because I was diagnosed with retinopathy in my 20s, which was terrifying. I work in a visual field and rubbed my eye one day, I noticed that the graph paper I was looking at was waves and not straight. And I'd seen doctors have my eyes checked every year. And they had said they were starting to see something but it didn't really panic me until I saw it myself. I saw a doctor who said you have two options. And one is we keep doing laser and the other was a very aggressive form of laser that was new. And I went, you know, 24 years old. I went with the aggressive ones, but long story not short, was that one of the things I always talk about for why I participate in clinical trials is that I will never have the opportunity to thank the people who kept my eyesight, the people who tested that technology. I'll never meet them. Tell them, but you know, your son that I can still see, or the reason I have to struggle is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either lost their vision or they lost their life. And many of them were gone. So I just assumed everybody was, for lack of a better word dead. And so Marty telling the story, I just lost it. And it was, this was my friend for an entire day, we lunch together, like we have this whole day of bonding. And all of a sudden, like all these people, I've always wanted to think through the person. Oh, nice, good. So I was a mess. So there is a picture of us that I took, because I am really into like capturing the moment in which I am we are both crying outside Elizabeth Warren, about the fact that like this is, there's no more important moment to me than this moment. So yeah, so that is how we are friends. So I'm sorry, Marty. Your version of this story, Stacey Simms 10:55 I'm upset with both of you now. Because I think I have cried twice on this podcast in five years. And you've, you've just done it again. And it takes a lot. But I think because and I'm not gonna, this is about you guys. But I think when you have a child diagnosed so young, and you have to jump in and take care and do all this stuff. And plus, I've worked with information for so long, my whole career has been in news. I hate to put it this way, but you kind of harden your heart. But at the same time, I'm with you, Alecia, I think all the time about the people that have done so much to make my son's life better. And to meet somebody like that in the circumstances in which you met Marty. Yeah, no. And so Marty, let's swing over to you. And don't brush it off. I know you're gonna try. But what was going through your head, when you looked over at Alecia and realized her reaction, Marty Drilling 11:47 as I said to Alecia, I was really moved, because this is the first time I had ever really met somebody and talk to somebody who had benefited from my laser treatment, I experimentation. And it moves me just realize in specifically that as a result of my efforts, and many others, we should still had benefit. And I knew that in general terms, but I really had never talked to anybody who had benefited from that. So while she was moved, because I'm still I was still alive. And she'd been told we all die. I was just moved to say, to meet somebody who had benefited and certainly appreciated. Stacey Simms 12:34 So if you don't mind, let me ask some details. And I always say look, if this gets too personal, you know, we'll move on. But I'm very curious if you don't mind, Alecia, what happens? So when you're treated like this? Does it go away after a while and you're fine. Now? Do you have to continue treatment would you mind kind of sharing what you went through? Right back to Alecia in just a moment. But first diabetes Connections is brought to you by Gvoke HypoPen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Jeeva hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it? You pull off the red cap, you push the yellow end onto bare skin and hold it for five seconds. That's it, find out more, go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvokeglucagon.com slash risk. Now back to Alecia talking about her issues with her vision and what she was able to do. Alecia Wesner 13:51 Yeah, absolutely. Well, I know that my situation is could be different than somebody else's. But for me, I was in my 20s this was, you know, certainly a wake up call of my own diabetes care and maybe I could take it up a notch. And I had not been on a pump before that and decided that would give me tighter control but that this was the time to make this decision. Which I look back at which I think a lot of people who are on pump technology say the same thing, which is that they wish they had done it sooner. And I'm certainly in that boat, but I had aggressive laser for years. And I am extremely grateful to the Marty's of the world specifically Marty and also really, really great doctors. My vision is fine now I'm 47 years old. So I wear glasses because I'm old not because I because of anything diabetes related. I will say so so you're both of my eyes have been treated a lot. I have not had any laser in well over 15 years, which is great. And I just saw my doctor Recently, and he said, you know, your, your eyes have never looked better. And that's what he says, Every time I see him, that's a nice thing to hear, as somebody who, you know, I, my careers in lighting design, the irony of all of this and that it's lasers treating my eyes. It's always been interesting to me. So I asked a lot of questions at the doctor's office, and I, I get a copy of all of my scans, because I'd like to look at them. And I have them hanging in my office, because they kind of center me and they remind me that you know, life is short, and to be grateful for the things you have. So I guess to answer your question, My vision is fine. But if I close one eye or the other and look at graph paper, it's definitely distorted. But my eyes compensate for that together. Stacey Simms 15:43 Wow. And Marty, I was kind of struck when we started this conversation, you said you did your first clinical trial in 1974, which is five years before Alecia was diagnosed, which is interesting to look at, would you mind taking us through a little bit of what your management was like, at that time? And, you know, just kind of talk a bit a little bit about what it was like, then? Marty Drilling 16:05 Well, way back then, you know, you were told, and now you have to understand well, I have to take a step back. Sure. Back in 74, I was living in Boston, and I only went to the Joslin clinic, which, of course, is one of the pioneers in the study of diabetes in that year, when is my third year of law school. And I had never been to a specialist before. So what we did was what my parents said, cobbled together, because they were frequently told when I was first diagnosed, and they would call and say, Hey, listen, you said he shouldn't have a snack in the afternoon. But if I don't give it to him, he's going to pass out. And my mother often says that one of the once you would call the doctor's office, they would say Mrs. Drilling, you know more about treating diabetes than we do. So you just do what you think it's appropriate. And that was not an easy burden for my parents to bear. And I give them all the credit in the world, but we, you know, I stuck to what I can remember is I stuck to the basic, you know, I'd have no whatever I had for breakfast at that time, I would try to maintain a boring diet just so I could try to stay within some bounds of normality. And don't forget, we didn't have the meters until probably around that time. And so we were just testing our urine in the cup. And I always thought orange was the predominant color because it always came up white. As I told my mother is, you know, you have to live. So I would go out with the my friends and had a drink of beer too, and on weekends and whatever, but I was a student so I did a lot of studying in law schools that sort of helped me maintain some degree of normality and exercise. I was much more made probably because my blood sugar's were higher than but I could do a lot more exercise then because my blood sugar's didn't plummet, except on rare occasions. And fortunately, my friends could tell when I was, wasn't doing well and what helped me out, but it's Stacey Simms 18:23 interesting you were and I know that some of us have a misconception of the like, the diabetes, Dark Ages that people were like, lying in bed or doing you weren't living life. And there you are. You went to college, you were in law school at this point. I mean, you found a way to make it work, even before blood sugar meters were at home and birthing. Marty Drilling 18:41 It's not like I had a choice. And I am an eternal optimist. So I figured, hey, this is what I have to deal with it to deal with it, you move forward. And the whole idea is to enjoy your life not to sit there and moan and groan that you have, you know, an illness because everybody has something. Stacey Simms 19:01 So when you found the clinic at the Joslin center, when you signed up for those clinical trials, how long did that last? Was it once and done? Did you continue to do that for years? Can you take us through a little bit of what those trials were like? Okay, Remember when I said I would jump in? Here I am. If you are squeamish, skip ahead about two and a half, maybe three minutes. If you are really sensitive and don't want to hear any details of any eye...
/episode/index/show/diabetesconnections/id/16920230
info_outline
On The World Stage With T1D: Cellist Alisa Weilerstein
11/17/2020
On The World Stage With T1D: Cellist Alisa Weilerstein
Alisa Weilerstein has been living with type 1 diabetes almost as long as she’s been making music. She debuted with the Cleveland Orchestra at age 13, played Carnegie Hall at 15, performed at the White House at 27, and at 29 was awarded the MacArthur Foundation “genius grant” fellowship. She was diagnosed with type 1 diabetes at age 9 and her first concern, of course, was for her fingertips! Alisa speaks to us from Berlin, where she and her family spend half their time. In Tell Me Something Good we share stories about girl scouts stepping up and hearing a Dexcom alarm at the Supreme Court. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Alisa mentions playing in ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (rough transcription, not yet corrected) Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, she was playing the cello before she went to kindergarten. In fact, when Alisa Weilerstein was diagnosed with type one at age nine, her first thought was her fingertips. Alisa Weilerstein 0:41 I was already quite curious about the cello and the left hand, of course, it's the hand that goes on the fingerboard. And I remember saying to my doctor, I'm not going to click my fingers on my left hand, they won't be able to play. Stacey Simms 0:50 She was certainly able to keep playing - Carnegie Hall at 15, the White House at 27 and at 29 Weilestein was awarded the MacArthur Foundation Genius Grant fellowship. She has quite a story. It was great to talk to her and tell me something good girl scouts stepping up. And did you hear the Dexcom at the supreme court hearings? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm so glad to have you along. I am your host Stacey Simms, and we aim to educate and inspire by sharing stories of connection. If you are new to the show, I am so glad to have you here a little bit about me. My son was diagnosed with type one right before he turned two he is almost 16 now so it's been a minute, my husband lives with type two. I don't have diabetes, but I have a background in broadcasting and local radio and television. And that is how you get the podcast. I am always amazed when I meet and talk to people with incredible musical talent like our guest this week. To me playing music reading music, expressing yourself through music is like another language. I appreciate music. But I don't have that kind of innate understanding that a true artist has my old radio show co host when I did mornings in Charlotte, North Carolina, where I am now for more than 10 years. And he was also a musician. And they just have this natural ability. I mean a true musician who can write music and read music and play and play by ear. To me it really is something special. And I hope I did this interview with Alisa justice. Because of course we're interested in talking about diabetes, but we talked about music as well. I also want to let you know, we are not out of November yet diabetes Awareness Month of course, we'll be doing some fun things on social media. I have a big sale going on for the world's first diabetes mom real life stories of raising a child with type 1 diabetes, it is on sale right now use the coupon code November, you've got to use it on my website at Diabetes connections.com. I can't do coupon codes on Amazon sorry. But this covers more than free shipping and everything else. So it's still a nice discount if we're doing $4 off for the rest of the month. So go to the website, scroll down, you'll see the book in the middle of the page there under the most recent podcast episodes. And to use the promo code, you're going to click order a signed copy. The other links take you to Amazon and you can't use a coupon code there. But if you click on order a signed copy, it'll take you to the right place. There's also a little teeny tab on top that says shop. It's hard for me to believe the book has been out for a year. I hope you're not tired of me talking about it. I got one nasty email this year I will share. Somebody stopped listening to the show two weeks after I published the book because he was tired of me talking about it. I felt like saying to him, you write a book, see if you want to talk about it! (laughs) But I appreciate you you know putting up with it. Especially this year when the whole book tour was canceled. I was supposed to like many of you, right? We were supposed to travel and go places and do things so you know I get it. Of course everybody's in the same boat. But I am going to continue to talk about the world's worst diabetes mom because man it was so much fun to put together and I'm not ashamed to say the response has been fantastic. So if you want to get a copy promo code November at Diabetes connections.com Diabetes Connections is brought to you by One Drop and getting diabetes supplies because a big pain you know that not only the ordering and the picking up but the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strip plans plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop lifts with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more go to Diabetes connections.com and click on the One Drop logo. My guest this week has been living with type one almost as long as she's been making music. Alisa Weilerstein has a remarkable story she debuted with the Cleveland Symphony At age 13, played Carnegie Hall at 15, performed at the White House at 27. And then she was awarded the MacArthur Foundation Genius Grant fellowship when she was 29 years old. I found her Tiny Desk concert. If you're familiar with those from NPR, that was 10 years ago, I will link that up as well. She is currently in Europe where she and her family live for half the year. I spoke to her. It was back in September when she her husband and their four year old daughter had just traveled back to Berlin from San Diego. Elisa, thank you so much for joining me, it's so interesting to talk to you that you're in Europe, we've got a little bit of a lag here on the call. But thanks for coming in. I Alisa Weilerstein 5:37 appreciate it. Oh, you're so welcome. Thank you for having me on your show. Stacey Simms 5:40 Before we jump in and talk diabetes and music. Tell me a little bit about living in Berlin. You live there half the time now? Alisa Weilerstein 5:47 Yes. Well, I mean, I'm a I'm a cellist I played classical music. Of course, in normal times, I play about 120 concerts per year. And they're split between Europe and North America with an occasional trip to Asia. Of course, during the pandemic, that's been radically changed, obviously. But that's my schedule during normal times. And so it was very important for both me and my husband, my husband, as a conductor, to have a base in Europe as well, so that we're not just constantly on transatlantic flights, more than we actually need to be. So we have a base in Europe, which is Berlin, and it's such a great Center for the Arts. And our daughter loves it here. Our daughter was actually born here four and a half years ago. And yes, that's one reason why we chose Berlin. Stacey Simms 6:27 I'm curious what the flight was like, and what the experiences like traveling from the US right now, with everything that's going on? Alisa Weilerstein 6:33 Well, it's interesting, because then we spent most of the pandemic in San Diego. So we were there from March 13. Basically, you know, that that the day that all of the all of the borders shot, and I actually traveled to Germany in June, to play a live broadcast in Hamburg. At that time, it was a two week quarantine in Germany. And so I can't even hear it here in my apartment in Berlin. And at that time, it was even more sort of wacky to travel at that point than it was a week ago, when we flew back here to San Diego with my whole family. At that time. I mean, there were there were so few flights, and there was practically no one in the airports. So I flew from LA to Newark, of course, you know, you don't take your mask off your face, obviously. And even though there were like 10 people on my site, and not more than that, and then I had 10 hours in Newark, and then I suppose from Newark to Frankfurt, and I got a test immediately upon arrival, they were even doing testing at the airport at that time. And then my results arrived within 48 hours. You know, I tested for the for the virus and also for the antibodies, which unfortunately, I didn't have the antibody, I was actually disappointed. But anyway, I flew back to San Diego to rejoin my family. And then my whole family to my husband, my daughter and and also our daughters many. We flew back to Berlin. Again, it was a very few flights to San Diego, Chicago, Chicago, London, London, Berlin with a four and a half year old, you can imagine what oh, my gosh. But, you know, we tested right before literally before he went to the airport, we went to a lab to test and then we got tested at the airport and in Berlin Tegel airport there. They're doing testing upon arrival. And those results came within 24 hours. And potential street for me got here. So my girl was able to go to school right away here, which made her very, very happy. Great. Yeah, Stacey Simms 8:18 yeah, I'm glad. I'm sure you're all glad to be settled. Unknown Speaker 8:21 Oh, yeah. Stacey Simms 8:24 So let's talk about type one. You were diagnosed at nine. Do you remember your diagnosis story? Alisa Weilerstein 8:30 Oh, yeah. Very well. Yeah, it was actually the month before my 10th birthday was March first 1992. And as you remember that, of course, like 92 was a kind of critical year in diabetes research, which definitively proved that tight control could ward off the risk of complications by you know, whopping percentage, and they are 66% less likely to get complications if the agency was 7% or below. So that was encouraging. But yeah, my diagnosis story was essentially, for the couple of months leading up to my doctor's visit, I exhibited the classic symptoms, I was urinating frequently with who had extreme thirst, and I was losing some weight. And I've always been a kind of muscular body type. And I suddenly became, you know, sort of like belly dancer and not like my energy was okay. And was was actually sort of normal until like, about a, I remember, like, a few days before I went to the doctor, and I was just feeling just sort of tired, which was very unlike me. And my mother took me to the pediatrician. She said, you know, maybe you have a bladder infection because I was, you know, going to the bathroom every hour or something like that. So I remember we got a urine sample from home, which the doctor had asked us to do that. And so you know, I peed into a jar basically. And then we went to the pediatrician and, sorry Stacey Simms 9:52 It's a type one diabetes all the time. Alisa Weilerstein 9:58 The diabetes podcast, so I'm your listeners are familiar with this. And anyway, I am submitted the sample. And then I remember the doctor who might like very much, I actually took my mother aside, and there was some whispering, which I didn't know about. And my mom looked very serious. And she said to me, Well, the doctor thinks the jar was contaminated. So just give her another example. And so I went to the Darrell bathrooms and gave her a sample from the sterile cup. And unfortunately, the result was the same, which of course, showed sky high glucose. And the doctor said, Well, you know, you need to go straight to the ER, and doctor told me, so do you need to get a blood test? And so I thought, Oh, my, you know, I don't really like and then I remember asking my mother, I said, well, Can I at least get some m&ms afterwards. And my poor mother, she, I mean, she didn't know much about diabetes, but she heard that word diabetes mentioned. And she knew that that meant a sugar issue. And so she just kind of looked at me and she opened her mouth, and she closed it again. And ah, and, you know, we drove to the hospital. And then the rest was really kind of blur. My father, you know, I remember my mom calling my father saying you need to get here now. And my, my little brother at the time was four. And I remember them all kind of standing around me and I was getting weighed. And then suddenly, I was like, on a gurney with IVs, and needles sticking in and out. And then doctors coming in saying, Yes, we think it's juvenile diabetes. And of course, you know, somebody was in examining my tongue to see how to hide it. And I might I, I might have been, and it was very kind of dramatic. My blood sugar was 464. At the time, they said that actually, we caught it relatively early. If you can believe that. I think at that time, some kids were coming in already, you know, the 800, or something like that, coming into with, you know, really, rather advanced ketoacidosis. And I wasn't there yet, I was throwing some ketones. It wasn't yet in kind of a dire situation. Anyway, I was then in the hospital for about a week just for the kind of diabetes education and it was kind of a crash course in how to manage type one diabetes. And at the time, my insulin regimen was NPH. And regular to the fast acting because it was it was even before the time of humalog. And my blood sugar meter took 45 seconds to read the blood glucose results and counting carbohydrates and all of that stuff. So this was my diabetes education. Stacey Simms 12:16 At nine years old, you were already on your way to playing music and performing as you did anyone say anything? I had to fit your first question, right? Can I still do this? What did they tell you about your musical career? Right back to Alisa, she's gonna answer that question. But first diabetes Connections is brought to you by Dexcom. And they have this great partnership with Tandem now with basal IQ and control IQ. And we started on basal IQ as soon as it was available. And this is the Dexcom g six tandem pump software program, and immediately started doing less work for better results. When we switch to control IQ, oh my gosh, even less work even better results with diabetes. I don't know if you remember, but years ago, they started with just putting the CGM information on the pump and it didn't communicate, it's just there. But this is something else, the whole system keeps spinning more steady. His time in range has increased significantly, his agency, you know, I don't share exact numbers, but it is the lowest that he's ever had. Of course, individual results may vary. But to learn more, just go to Diabetes connections.com and click on the Dexcom logo right back now to Elisa sharing what she was most worried about at her diagnosis. Alisa Weilerstein 13:38 Well, this is why I say 1992 was actually I mean, if one had to be diagnosed with diabetes, you know, at any time, it was an encouraging year to be diagnosed. Because I mean that the doctors who actually were well informed said, If you manage this, well, you will be able to live exactly the life that you want to live. And that was the constant messaging from my doctor at the time, all the nurses around each month this is and and they were teaching me how to do things. And he said this is the reason you have to do this is so that you can live a full life and do all the things that you want to do and play the cello do go to school, see your friends, play sports, do all of these things. And I remember there was just one issue, where I kind of had to make a special accommodation, which is what the finger picking, because of course I was already as you say I but I was already quite curious about the cello. And the left hand, of course is the hand that goes on the fingerboard. And I remember saying to my doctors, I'm not going to click my fingers on my left hence I won't be able to play and I but however if I was able to prick my fingers on my on my bow hand that wouldn't have affected that. So I only used three fingers to prick and my whole life after that I only I only use the same three fingers to pick my finger, my test my blood sugar, and luckily they accommodated and they basically well as long as you do it and as long as you don't hurt yourself. Sure. That was the answer. Stacey Simms 14:57 I was going to ask you about that. Because I couldn't imagine especially the amount of finger prick you had to do back then. Yeah, Listen, I've, for somebody who nagged her son for years to rotate fingers do a different thing. Yeah, you were able to just move it around enough so that you didn't have issues with just those three fingers. Alisa Weilerstein 15:14 No, I didn't. And, and even at the time, I mean, the lancets were very good, very painless, and very thin. So I mean, there was actually there was never an issue. And I mean, at the time, the recommendation was to test four times a day, I remember at the time that was considered like being very responsible. Of course, now, we would probably say that's kind of bare minimum. But as I got older, and I tested more often, I mean, I was asked to test before the continuous glucose monitors were accurate enough to kind of rely on I was testing 10 times a day, and I was just using those same three fingers. Stacey Simms 15:43 That's so interesting. And you've mentioned a couple times 1992, we should just step back and mention as you listen, if you're not familiar, we're referring here to the dcct trial, the diabetes control and complications trial, which was really the first time as you said, that they believed that you could make a difference. I mean, it's hard to believe that before that time, doctors thought, Well, that's it if you have type one or juvenile diabetes, as they called it, you wouldn't live past 30. And this showed that you could, Alisa Weilerstein 16:09 yeah, and you would kind of have to go to an alternative doctor to get anything more hopeful, or any kind of agency with it's really yeah, and Stacey Simms 16:16 I'll link up more information on the dcct. It was such a pivotal time and diabetes. And it wasn't that long ago, when you think about it now. Alright, so you're then on your way, you're doing what you need to do. You've got your family on board, you're playing music, Cleveland Orchestra at age 13. And on and on. And I have to say, when I watch someone play the cello, and please forgive me, I am so musically ignorant, except that I enjoy listening. It seems like it's very athletic. It's a very physical looking instrument to play. Can you talk about that? Is it I assume that Alisa Weilerstein 16:48 yes, it is? Oh, yeah, yeah, completely. And especially I'm not very tall, myself, I'm about five...
/episode/index/show/diabetesconnections/id/16826387
info_outline
Staying in the Military After A T1D Diagnosis - Jason Cyr's Story
11/10/2020
Staying in the Military After A T1D Diagnosis - Jason Cyr's Story
Staying in the US Military ater a type 1 diabetes diagnosis isn't easy, but it can be done. Meet Jason Cyr. Diagnosed in 2011 while deployed in Africa, he was able to return to the Army and retire on his own terms a few years later. Jason is an élite cyclist and now a cycling coach. Stacey mentions another veteran who was able to stay on active duty after a type 1 diabetes diagnosis. In Tell Me Something Good diabetes month stuff, a big milestone for the college diabetes network and This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, we're celebrating Veterans Day by sharing the story of Jason Cyr. He was diagnosed with type one while serving in the US military deployed in Africa in 2011. Jason Cyr 0:40 You know, I was like oh my gosh, this is like my career is on this trajectory to continue to serve whether it's special operations or just back to the regular army. I really enjoy this I started because I really love working with soldiers mentoring soldiers leading soldiers and I was like this is all over now. So now what am I gonna do? Stacey Simms 0:56 Cyr was able to stay in the military. He shares that story what he's doing now and why I have a photo of him on a unicycle In Tell me something good. Lots of Diabetes Awareness Month stuff and a big milestone for the college diabetes network. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I am your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two, we are getting close to his 14 year diversity. My husband lives with type two, I don't have diabetes, but I have a background in broadcasting and local radio and television news. And that is how you get the podcast. It is of course diabetes Awareness Month. So there's lots of things you're seeing if you follow me on social media. I'm posting as I do every year, photos, stories of people in the Charlotte, North Carolina area where I live, who live with diabetes. And I also and this is the first time I'm doing this in diabetes Awareness Month, I'm running a contest, I'm running two contests, and they have started as this episode first airs, if you're listening to it, the week of veterans week of 2020, the contests are going so I'm not gonna spend too much time on them here because they are social media only one of them is in the Facebook group Diabetes Connections, the group you have to be in the group to take part and the other one is on my Instagram and Instagram for me is only Stacey Simms, I do not have a separate one for the show. It's enough. So you get pictures of me walking my dog and pictures of my husband cooking and diabetes awareness stuff and podcast stuff all in one Instagram feed. I want to give a brief shout out and thank you to the companies that are helping out with the Instagram contest. This is a multi company prize giveaway, we've got a lot of people taking part, it's possible that I may add to this list, and I will certainly revisit it. But big thank you to the folks at NRG bytes. Pump Peelz RX Sugar, Dia-Be-Tees, Wherever EuGO, T1D3DGear and GTTHL Apparel and to the world's worst diabetes mom, the book we're giving that away to I will list all of those fabulous people with links to the companies in the show notes Just go to Diabetes connections.com. But the best way to find out more about them is to head on over to Instagram and take part in that contest. big thank you to everybody for taking part in that. Kind of a subdued Diabetes Awareness Month, I think for many people with the election in the US and just a lot of diabetes burnout out there. So I hope the contest is a bright spot. But I'm also doing a panel that is this Friday, as you listen on November 13. And that is with my friends at One Drop. We've put together a great panel, we're going to be talking about community, how to get more involved, what we get from community and some surprises there. And we are talking to people with type one, type two and parents of children with type one. And that's going to be a lot of fun that is live on the Diabetes Connections Facebook page, and One Drop will be amplifying it as well. And speaking of One Drop Diabetes Connections is brought to you by One Drop and I spoke to the people there. And I've always been really impressed at how much they get diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo. My guest this week is a member of a very small club. Not only was Jason Cyr diagnosed with type 1 diabetes while he was in the military, he was allowed to stay in. And you may recall, I met Mark Thompson last year I spoke to him last November. And until this interview, Mark was the only other veteran I've ever talked to personally, who was able to stay in the military. After a diagnosis Mark story is slightly different. His career path after is different as well. I will link up more about mark in the show notes for this episode, you can go back and listen to the prior episode, and learn more as well. And those show notes and the transcript as always, at Diabetes connections.com. Now the military policy in the US is pretty straightforward for enlisting, you cannot enlist in the military with a chronic condition like type one. But there is just just a bit more wiggle room if you're diagnosed while you're already in. So Jason Cyr was diagnosed while deployed in Africa. And he thought as you can understand that his symptoms were you know, from the weather or the altitude or all of the extra activity, he always does big runner and a big biker. He's going to tell that story and what he's been doing since he retired from the military in 2016. Jason, thank you so much for joining me, your story is pretty remarkable. I'm excited to talk to you. Jason Cyr 6:16 Oh, well, thanks for having me, Stacy. I really appreciate I don't know if it's a remarkable story. But I appreciate you saying that. I'm flattered. Stacey Simms 6:22 You're the second person that I've interviewed or even have known with all the hundreds of maybe thousands of people that we've been lucky to meet the diabetes community who has been able to stay in the military after a type one diabetes diagnosis. So I'd say that's pretty remarkable. And I'd love let's just start right there. Can you tell me what happened where what was going on when you were diagnosed? Jason Cyr 6:42 This was, oh, gosh, it was 2011. I was deployed to sock see the Special Operations Command Horn of Africa. And I was working in Kenya for that organization, basically, helping to do some work with with the Kenyan military. And we kind of set up well, that kind of we had set up an American style Ranger School there. And I was helping a lot of the officers and enlisted folks just make that organization and that school run more smoothly. I am a Ranger School graduate. My career started actually, in the 75th Ranger Regiment, specifically a third Ranger Battalion, spent most of my time at sea company. But so I was there. And we were, were doing some training. And because we were living in the Mount Kenya area of Kenya, it was that elevation. If I recall correctly, this is going back a few years now. I think it was about 11,000 feet or living that. And so I and I was running every day, I was probably running 10 miles a day or something like that, just because I didn't have my my bicycle there. And I was running with some Kenyans. And so I just kind of had some signs and symptoms, you know, the polydipsia polyuria weight loss, and I just sort of chalked it up to Hey, I'm eating different foods, and I'm living in at times in an austere environment and running every day. And like I said, at elevation, so I just kind of dismiss those things. Stacey Simms 8:06 And I'm gonna just jump in polydipsia polyuria really thirsty really have to pay? Jason Cyr 8:10 Yeah, exactly. just translate for me and drink. Yeah, sure. And drinking like a gallon of water that you know, cup. You know, I don't know. I betcha I was drinking a gallon of water a day. But I just sort of chalked it up to like, Oh, it's fine. I'm a special forces guy. This is normal. You know, we're supposed to be able to just sort of, I guess suck it up. Anyway, I did have a medic with me on the deployment of Special Forces medic at 18 Delta. And he multiple times said, Hey, you should there's something wrong with you. You've got to go get checked out. So I think he had reached out to the our battalion surgeon and the surgeon had had come down to to actually go and climb Mount Kenya with me. Like on a weekend, a four day weekend we had off. And so anyway, we went climbing mountain and after that, he said, Hey, you got to go get looked at so I had a meeting with I think that defense attache at the at the embassy in Nairobi A few days later. And so I said, Yeah, when I go down there, I've got to meet with him. I've got to brief him on some stuff that we're doing. And I'll go get checked. So I go down to the hospital after the briefing. And I present with like a blood sugar of like 840 I think, a one C of like 14. So at that point, obviously we knew something was wrong. superfit guy didn't think it was type two, but I was thinking I can't be type one. I'm 36 years older, or whatever it was 37 maybe at the time, wow. That of course starts a cascade effect where they evacuate back to I think we're in Djibouti at that time, and then eventually on to launch to Germany, where, you know, I got some more testing, done some more formal testing done and they said, hey, you've got type 1 diabetes. So you know, after probably a 15 minute pity party, I said Well, I'm gonna have to own this. So I went from there. Yeah, I guess at that point, I went to Fort Belvoir and Walter Reed Medical Center and got some more things done, figured out and then I went into the what's called the ward Transition battalion where they basically start proceedings to, you know, put you out or medically retire or whatever out of the military. And I guess long story short, I had some great officers that I worked for a two star, and at the time a full bird Colonel that that just said, Hey, you know, you can stay and we've just invested all this time and money in you. I was just about through grad school later on while I was there, and they just said, Hey, we know we're going to retain you. So you go to this medical board, and the board decides, hey, we're gonna put you out. But if you can provide overwhelming evidence that you can stay in and do it safely, and you're going to have these folks that are going to, I guess, you know, not deploy you or put you in an environment where you can make a bad decision if you're hypoglycemic, or something will let you stay in. And so, you know, I think at that point, I was probably at 17 years or something like that. So I really only had three years ago, and my company command was up, I was in a staff position. So there's probably little harm I could do if I had a had a low or something like that. And I think at that point, I had displayed that I you know, had run a marathon I was racing factor racing and a category one and, you know, elite level of still doing some like UCI races. And I think I had displayed that I owned the disease as well as you can, in that short amount of time. And the board made a decision to let me stay in 220. I actually ended up doing I think, 23 years all together. So I ended up staying, and probably six more years, and then retired. Stacey Simms 11:26 All right. It's an incredible story. I have questions. You mentioned, when you were diagnosed, you had a 15 minute pity party. And I'm just curious. Now I'm assuming that's a little bit of an exaggeration. I'm not taking anything away. If it was 15 minutes and moved on. That's fantastic. It's amazing. But what what really went through your mind, because you had been, as you said, 1718 years in, you didn't know yet that you were going to stay. You didn't know yet that you'd be able to continue with marathons and bike riding and doing everything that you did, do you mind and I hate to get so personal. But just from my own experience, I had a little bit more than a 15 minute pity party when my son was diagnosed. I'm curious what really went through your mind at that moment? Jason Cyr 12:06 Oh, well, you know, I think after 17 or 16, whatever it was probably 17 years of service, you're kind of like, Man, I've done all this stuff. I've served in all these great units. Why me? I've always been super fit. I think I just, you know, I was like, Oh my gosh, this is like my career is on this trajectory, to continue to serve. And you know, whether it's special operations, or just back to the regular army, I really enjoy this. I don't necessarily serve I mean, obviously, I serve because I love my country. But I serve because I really love working with soldiers, mentoring soldiers, leading soldiers. And I was like, this is all over now. So now what am I going to do? Because this has sort of been who I am and what I've done. In a nutshell that that is what it is. That said, I can't say that I wouldn't if my if my son is diagnosed with Type One Diabetes, I'm going to have a longer than 15 minute pity party, for sure. I can empathize with you. 100%. I think for me, it was just like, hey, let's just get on with it. Let's own this as much as we can. Stacey Simms 13:02 That'd be just be the perspective of a parent versus family Jason Cyr 13:05 Yeah. It's very different than me. Yeah. But yeah, I don't even Oh, gosh, I can't even imagine. I mean, I think it's difficult day to day. And I'm one of these people who probably there couldn't be a better person to get it. In my own opinion, because I'm just one of those people who constantly looks at my Dexcom. I'm constantly, you know, weighing what I shouldn't shouldn't put in my body. You know, how hard should I go? I'm constantly thinking about the dosages of insulin I'm taking. So I don't think it would be there's a better person to get it. But yeah, I mean, that's generally what went through my mind. Stacey Simms 13:37 When you went back when you were clear to go back into what you were doing. I'm curious, what was your routine at the time? Because we're talking about what, seven or eight years ago you mentioned Dexcom? Did you have that then I think I read you were checking your blood sugar like 20 times a day at one point, you know, take us through the routine of that initial first year back in the service. Right back to Jason answering that question. But first diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Gvoke hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use how easy you pull off the red cap and push the yellow end onto bear skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo joke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon comm slash risk. Now back to my conversation with Jason. He is talking about what it was like when he first went back into the army after being diagnosed. Jason Cyr 14:58 I didn't have a CGM Immediately, and obviously, they didn't put me on a pump either. So I was, you know, manually doing this stuff, I was actually buying extra strips, you know, because I was testing like 15 or 20 times a day. And so the prescription that I had wouldn't, wasn't lasting that, you know, as long as it normally would. But part of the reason I was doing that is because I was also trying to figure out how to get back to racing at at least the highest level I could do. And at the time, I did have a USAC, or United States cycling Association, or USA cycling pro license. And so you know, as a pro, I was pretty mid pack fodder. But definitely fast enough that I was, you know, winning expert level races at Nationals, or at least getting on the podium. So I wanted to at least see if I could get back to that. And the way to do that, as far as I was concerned, is just collect data. And so my, my wife, who is a scientist helped me build this really wild looking Excel spreadsheet that had like linear regression on it. And I was just plotting points and figuring out, okay, if I go for 20 minutes at max effort, anaerobically, what happens to my blood sugar, and then if I go 40 minutes, what happens? And if I feed at 45 minutes, you know, what happens after that. And so I just was, I guess, in the course of training six days a week, I was just trying to figure out what happens, you know, if I have this much, you know, slow acting insulin on board, you know, what happens with that race effort. And then what happens if I have, you know, from working out or in a periodized stage, where I'm doing like six days of really hard training, and then taking a break? Is the insulin a lot more sensitive. And, you know, I found out obviously, that it was, so just things like that I was just trying to figure it out. my saving grace really was that my wife, unbeknownst to me, wrote a letter to Phil Sutherland that at the time team type one, and he immediately invited me at the time I think we were Sanofi or Sena Fie team type one. So I was on that team, I think, for a year. And then I got on to the team Novo Nordisk elite team. And just being around type one athletes at training camp in Spain, or in California, we did, we did quite a few training camps over the, I think, five years I was with that team. That was a huge help, because it was just a depth and breadth of knowledge and institutional knowledge that I just didn't have. I didn't know any other type one, athletes, I just started asking those guys questions. And then I also had unfettered access to a an endocrinologist, who's who was on the team, and I just started firing off questions and trying to figure it out. And so the trajectory that I had for learning how to race and deal with diabetes and still maintain a 12, or 14 hour week training schedule was great. And I couldn't have done it. Or I mean, I could have done it, but it would have taken I take a lot longer to figure out those variables. So I think having access to...
/episode/index/show/diabetesconnections/id/16737215
info_outline
“The Mission Hasn’t Changed At All” - JDRF CEO Aaron Kowalski on the Impact of COVID-19
11/05/2020
“The Mission Hasn’t Changed At All” - JDRF CEO Aaron Kowalski on the Impact of COVID-19
JDRF began this year by funding more research projects than ever before, but after COVID changed everything, what does the future hold? We caught up with CEO Aaron Kowalski to ask what their mission to "cure, prevent & treat" type 1 diabetes look like in a time when fund raising is down and the future is unclear. In Tell Me Something Good find out about two contests Stacey is running. One in our FB group (see link below) and the other We're celebrating 1,000,000 downloads!! full of expert advice for managing insulin-dependent diabetes. Terrific for newly diagnosed families or caregivers and friends who want to learn more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (rough transcript - check back for edited version) Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo Pen, the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:23 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, catching up with JDRF’s CEO to talk about what this year has been like, and what it all means for their mission and research going forward. I also asked if he felt it was a good decision to keep those fundraising emails going during a pandemic. Aaron Kowalski 0:44 But the decision to continue to ask people to support us was not to have people feel pressured that they were struggling, but for the folks who could who had the financial capabilities to lean in and help us preserve some of the incredible mission momentum we have. Stacey Simms 1:00 Aaron Kowalski is the first CEO of JDRF to actually live with Type One Diabetes. We talked about a wide range of topics. Tell me something good a big milestone to share with you and of course, it is diabetes awareness month we've got contests to talk about. this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you here we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host, Stacey Simms, and my son was diagnosed almost 14 years ago, his diversary is in early December. He's a sophomore in high school now he was diagnosed as a toddler, my husband lives with type two diabetes, I do not have diabetes. But I have a background in broadcasting local radio and television news. And that is how you get the podcast. It is of course diabetes Awareness Month, every year in the month of November. And we say that this is more for people outside the community, right, it's our chance to educate them about diabetes, because every day is diabetes Awareness Month once you have a type of diabetes, so I'm not going to do too many different things on the show for this month. But I have some efforts going to educate people outside of the usual suspects around here. I'm also going to be running two contests, I'm going to share all that information. After the interview one contest on Instagram one on Facebook, if you follow me, you will see them if you don't more information coming up. I also want to let you know that I have released an Ebook. This is something I've been working on for quite a while. It has selected transcripts from the podcast, but it is in a beautiful, easy to read form. And the theme of the book is a comprehensive look at some of the questions that we all get asked over and over again. So I'm going to put a link in the show notes. It is free. Yeah, yes, sign up for my newsletter. If you've already signed up for the newsletter, if you already get it every week, you can sign up again, I promise you won't get to. But you will get the free ebook. If you remember we've been doing these Diabetes Connections extra episodes, where I put out an excerpt and then the much longer episode a couple of days after. That's where these transcriptions come from. So it's all about CGM, all about insulin all about ketones all about blood sugar lows, basic stuff that I think is really good if you're newer diagnosed, if you're looking for a refresher, or if you want to share with a caregiver or a loved one who wants to learn more, but might learn better from an ebook, you know, on their Kindle than from a conversation with you. We all know people like that. So I hope you share it. I hope you like it. Again, it is free. You do have to sign up for the newsletter, more information in the Facebook group and in the show notes Just go to Diabetes connections.com and you will see it linked up right in this episode. Okay JDRF CEO coming up in just a moment, but first Diabetes Connections is brought to you by One Drop. And you know, when I spoke to people at One Drop, I was really impressed at how much they get diabetes. And it makes a lot of sense because their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo. My guest this week is Aaron Kowalski. He has been the CEO of JDRF since the spring of 2019. Of course this has been a challenging year for everybody to say the least. And when the crisis first started, I think we all knew that nonprofits were going to take a big hit. As you will hear in the interview. I sent to Aaron and email with my reservations look I'm a supporter of JDRF, financially, and I've been on the local board. And I felt that fundraising as usual would be a mistake. I advocated for a fund that would help people who we knew were going to lose their jobs and would need immediate help. But I am not inside JDRF. I haven't been on any board with them for about eight years, maybe maybe a little bit more. But I thought it would be helpful to have some background of my opinion, and where I stand at the start of this interview. But I also wanted to let Aaron give a research update at a sort of a state of the state. So there's a lot going on here. But I was really thrilled to he came on and was so upfront, really answered my questions and gave us a lot of information. Aaron, thanks so much for spending some time with me and my listeners. I appreciate it's good to talk to you again. Aaron Kowalski5:46 Hey, Stacey, thanks for having me on. Stacey Simms 5:48 I'm not exactly sure how to jump in. I feel like everything I say about this year has become a cliche, but I'll barrel through it in that this is a year like nothing we've seen before. Can you give us a little bit of a kind of a state of the state of JDRF as we sit here in November of 2020? Aaron Kowalski6:06 Sure. I think like everybody, the the the last number of months have been very difficult. And certainly it's been for JDRF. I wish I could say a few things. One is pre COVID. I had a meeting and this goes back into early March with our board of directors and I, I told them that this was an unprecedented time for research progress, and amazing advancements happening on all fronts of diabetes research. And I'm sure we'll talk about those. And then of course, as we all know, COVID ahead, and fast forward to November. And I guess what I would say is just that I've had to make some changes, we reduced our staff somewhat significantly, we have a number of chapters we have from over 60 to 29. But the intention, the mission hasn't changed at all. And all of these changes, were focused upon making sure that we could continue to maintain the momentum we saw and research and development of life changing breakthroughs to help people to one day security one day preventing one day better treating one day, and that's what we're focused upon is maintaining research and mission momentum. We're not going to abandon any part of the United States. In fact, we hope to engage with more people. It's really just about how do we structure JDRF most efficiently in the face of not being able to get together for walks and galleries and the different fundraising events we do. So I'm an optimist by nature. So I'm optimistic that we have a lot of challenges in front of us with COVID. Still, but Gosh, when we do talk about research progress, you'll hear that there's so much excitement happening right now. And we we're doing everything we can to keep that going. Stacey Simms 7:52 Well, let's just jump in and talk about it now tell us some of the research projects that are ongoing, that has not been affected by COVID. And in fundraising and things like that. Aaron Kowalski8:02 Yeah, I think the good news is research has progressed, even in the face of COVID. We we've monitored this, we fund research in the United States, of course, but we also fund research in 20 other countries, and depending on the country, depending on the lab, the state, we are seeing research be done. It's not perfect. It's not 100%. It's not pre COVID levels, but it's still good. And you know the way our mission accelerating life changing breakthroughs, to cure prevent better to to end on each of these fronts, we're seeing incredible progress. Of course, many of you know that I worked on artificial pancreas for a long time. My brother and I are using a control IQ systems, we looped for a long time, you look at control IQ, which was amazing FDA approval, which spun out of research that we funded with the team at UVA, the 770 G, and I'm proud to have funded some of the work that went into the hybrid cluster, but Medtronic, the Insulet system that's coming down the pike is some of the work we funded at UC Santa Barbara and now at Harvard. So you know, the devices, these better treatment options. You and I have talked about this. I mean, it's a pretty life changing. And um, I literally almost took a picture of my blood sugar this morning, because I was like, gosh, I never could have done that before. Yeah, and here I am, you know, cruising at 100 for seven straight hours overnight. Yeah, Stacey Simms 9:26 as I've mentioned, I have a teenage son who were supposed to be in the throes of the worst years of type one and instead he has the best time and range, the lowest agency and the least amount of work he's ever done. And it's it's just amazing to me. Aaron Kowalski9:42 It's it's something I'm really really proud of and but some of your listeners might know that my brother has severe hypoglycemia problems. It was and started with diabetes when there was urine testing. And here we are now living a totally different life. And that is Yeah, of course, the JDRF was founded to cure to one date. And that's our number. That's our North Star. That's that's our number one goal. But in the meantime, I often said particularly back in the beginning of that project, when there was some controversy, if we should do it, we need to be healthy when there are cures. So the advancements that are happening on devices are awesome. And if we continue to push on that front, you may know that we have a big project with Tidepool bringing loop the DIY solution, through FDA in a Tidepool loop form, which will allow for a plug and play of sensors and algorithms and pumps, I'm really excited about that we have some projects and better infusion sets and faster insulin. So on the treatment side of the equation, JDRF is still focused there. What I would say though, is in the face of COVID, we realized that I don't want to say our work is through because we will continue to focus there. But there are a bunch of companies out there Medtronic Tandem Insulet, you name a title. So big foot, we realize that we can start to pass the baton, we have started to pass the baton on, on that work, and we're super excited is really on the work on preventing and curing to end to end cures. And we're gonna talk about why I pluralize that, because that's where the incredible action and it actually reminds me of the early days of the artificial pancreas project when people said, Oh, you've been hearing this forever. I've been hearing about an artificial pancreas for 35 years, you know, what's different now. And it was different. The science had moved the the the tech technologies had moved. And here we are now using hybrid closed loops. I see cell therapies and preventative therapies as being in a similar place. And I think the next coming years are going to be transformative on those fields. Stacey Simms 11:52 All right, take us through a couple of those projects, if you could, because I'm with you. That sounds exciting. Aaron Kowalski11:57 Yeah. Okay, so the first thing I'll start with cures, we always say we're gonna find a cure. And I think when I talk about this, there is a skepticism because people have been, you know, there's always I was promised five years or 10 years. And why was that? And so I get into often when I when I talk and you know, I'm sure your listeners will have similar questions is, when, if you step back in time, and think about the JDRF in the 90s, the decade of a cure is what they called it. Why did they say that? And the reason was, the people were being cured, and they were being cured through islet transplantation. So many of your listeners have heard of islet transplantation, somebody dies, they donate organs, one of the organs of pancreas, people can now harvest cells out of the pancreas and transplant them into people via an injection, and it actually restores normal blood sugars. You've probably heard of the Edmonton protocol, Dr. James Shapiro JDRF, worked for a whip and continues for decades. If you meet somebody who's had an islet transplantation, they will tell you they are cured. They're a one sees completely normalized. They don't take insulin, they don't test they can eat, you know, food and don't have high blood sugars. The downside is they take chronic immunosuppressants, and it requires an organ which is a supply demand issue. We know any organ donation is either always big lists. So you know that this idea of I was promised something that wasn't real is not exactly accurate. We could cure people and in fact, I was with Dr. Shapiro last year, he has people who have been off insulin for 20 years with an islet transplant. So that shows that it's possible. Stacey Simms 13:52 Right back to Aaron. He'll finish that thought in just a moment. But first diabetes Connections is brought to you by Gvoke Hypo Pen and almost everybody who takes insulin has experienced a low blood sugar and that can be scary, but a very low blood sugar is really scary. And that's where Gvoke hypo pen comes in. gvoke is the first auto injector to treat very low blood sugar. Gvoke Hypo Pen is pre mixed and ready to go with a new visible needle. That means it's easy to use. How easy is it you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. Now back to Aaron Kowalski talking about pure research. Aaron Kowalski14:43 And the reason I say cures is very similar to the you know the artificial pancreas work we did back in the day. I published a paper in I think 2008 and I said there is no single artificial pancreas. There are going to be a series of different solutions. Pump turns off insulin pump the proactively turns off insulin pump that lops off highs and lows, etc, and so forth and getting more and more sophisticated. And we call that the JDRF roadmap. Similarly, there's not going to be a single cure to type one, they're going to be multiple approaches. And that's where there's huge excitement because if you look at for example, there are multiple groups moving into human clinical trials of what I would call modern islet transplantation. Modern islet transplantation means enough cells for everybody, because now we're using stem cell derived eyelets, instead of what we would call calavera. Guy let somebody who passed away and donated their pancreas for so now via stem cell derived islets, you have an unlimited supply source. And it's not just one group that has an unlimited supply source. We have Harvard, Novo Nordisk University of British Columbia via sight, UCSF University of Sydney, there are multiple groups that can make stem cells into eyelids, that looks just like eyelids that came out of our person and can cure animals. So huge, huge advance. The other side of the equation is even a suppression. We have multiple approaches that are going to obviate the need for immunosuppressants. So this isn't getting real. I mean, this is violence and human clinical trials and seeing stem cell derived islet insulin production, these cells that are grown up in test tubes and petri dishes, transplanted into people now starting to make insulin. I was Stacey Simms 16:33 just gonna ask those different groups that you mentioned, my first question was going to be what about human trials? So via sites in those are the other ones you mentioned moving in the next couple of years to human trials as well? Yeah. Aaron Kowalski16:45 Oh, yeah. I very much anticipate other companies being in human trials in 2021. Wow. And that is awesome. Because, again, if you think about the process, and you know, why was I promised five years? Well, the process for a small group of selected people worked. But the process for a big group of people wasn't ready for primetime. And we needed different approaches, we needed stem cells, we needed immuno protectants. And now here we are in 2020. It's a, you know, there's been a lot of science since 2000. And we're going to see human trials now happening more and more. Stacey Simms 17:23 We're going to talk about kind of today, and fundraising issues and some criticism in just a moment. But I also want to address I'd love for you to talk as well, and you already mentioned this prevention, because when I hear about to come up, and I'm very excited that I now know how to pronounce it. You know, that's one study that seems to be ongoing, doesn't even finished yet, is it? Aaron Kowalski17:44 Well, there but you know, again, there are a number of these trials often happen in different stages and a patient population. So there, they've done some trials that have been very promising and they're ramping up and doing next gen trials. Stacey Simms 17:57 Are there other prevention studies funded by JDRF, other than the one that I'm referring to, which is part of trial net, you know, Dennett USS, Aaron Kowalski18:05 oh, yeah, we are working across the board. I mean, we have a number of different groups that are using different drugs that slow the progression of type 1 diabetes. You may have heard of Verapamil, which is actually a beta solid agent. ATG Novo Nordisk was a big program, the preventing to end and it's interesting when I talked to the community about this, sometimes, people bristle a little bit and they're like, well, what's prevention gonna do for me, preventing to end in caring to end are interlinked?...
/episode/index/show/diabetesconnections/id/16696136
info_outline
"It's Not Going To Go Away" - The Future of Telemedicine & Diabetes
11/03/2020
"It's Not Going To Go Away" - The Future of Telemedicine & Diabetes
Have you seen your doctor remotely this year? Turns out that endocrinology is the number one specialty using telemedicine in 2020. We talk to Dr. Peter Alperin from that says about 20% of all medical visits will be conducted via telemedicine this year. We also talk about what this means going forward, how to get the most of a visit when you can't be in person and why the heck doctors' offices still use fax machines! ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo-pen, the first pre mixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 Hi, and welcome to another episode of our show. As this episode goes live, it is Election Day in the United States and we are not going to focus on that here. I am guessing many of you have actually found this episode in the days following its initial release. But whenever you are joining us I think this is a really interesting topic that you know many of us experienced for the first time this year. And that's telehealth. If you are new to the show. I'm really glad you found us. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes. My son Benny was diagnosed when he was a toddler way back in 2006. He is now a sophomore in high school and we had one telehealth visit earlier this year. That was back in March, when everything started, we were able to go into the doctor's office for his summer and fall endocrinology appointments. I talked more about the experience, you know how it went some of the pitfalls that we ran into for that first telehealth appointment. And I do that in the interview. Just a heads up this will be a shorter than usual episode is just the interview, we will have a regular episode with our segments with Tell me something good and all of that later this week. For this episode, I am talking to the folks from Doximity. This is a professional medical network, sort of like LinkedIn for doctors. They had a study recently that said endocrinology is the specialty that uses telemedicine the most number one at everybody. And there are some interesting reasons why, of course remote or telehealth or whatever want to call it was huge earlier this year, it did peak around April or May. But there are some predictions that about 20% of all medical visits will still be conducted via telemedicine by the close of this year by the end of 2020. And that would represent about $29 billion worth of medical services. It is certainly worth watching. So why endocrinology? What does this mean going forward? And why do doctors offices still use fax machines? Those are some of the questions I asked Dr. Pete Alperin, who joined us from Doximity. Dr. Alperin, thank you so much for joining me. I appreciate you spending some time with us today. Dr. Peter Alperin Thanks. Thank you so much for having me looking forward to it. Stacey Simms So a lot to unpack here with this study and why endocrinology but let me just back up first and ask you what is Doximity? What do you all do? Dr. Peter Alperin 2:51 So Doximity is the largest online network of health professionals in the United States. And I think a great way to think about us is we're like a LinkedIn for healthcare professionals. We started off primarily with physicians, but we've expanded to include nurse practitioners, PhDs and a variety of other you know, healthcare professionals that range the gamut from, you know, optometrists, etc, to physical therapists and pharmacists and the like. We have over 70% of United States physicians have joined our network, and we have over, you know, 1.2 million members overall. And when I say it's like LinkedIn, you can think of it as LinkedIn, but tailored towards the healthcare professional. So we have a lot of features that are very specific to the needs of the people who work in the medical field. So we have HIPAA compliant communication, including faxing, we have our Doximity, dialer, video and audio products, which allow physicians to communicate easily securely and reliably with their patients. And then doctors can connect with each other much like you would on other social sites, and earn free continuing medical education. And they keep up on the latest Medical News. And we have a news feed, which is one of the biggest features on our site that allows the health care professionals to keep up on the latest and greatest in their particular fields, as well as just general information about the health care profession. Stacey Simms 4:09 So one of the things that you've done with Doximity this year is well, I assume you do this every year is a state report, right? The 2020 state report and this is the state of telemedicine. I'm just curious, do you do that every year, Dr. Peter Alperin 4:22 which is the second year that we've done this, and we've done studies in a variety of other areas. So we've done workforce studies, but we have a unique position in the market, being able to you know, call on the information and the opinions of like I mentioned over 70% of the US physician base and as a result, it gives us a really nice vantage point so that we can understand and really learn about these issues, particularly workforce issues. Stacey Simms 4:48 So let's talk about the 2020 state of telemedicine report. And it's interesting because I have a great audience. I have a very smart audience but I also have an audience that is uniquely positioned to experience probably just as much if not more telehealth than anybody else in the country this year, so I'm really curious to hear these results because endocrinology was the number one specialty that utilizes telemedicine the most in that study, tell me a little bit more about that by number by percentage. Dr. Peter Alperin 5:16 So it's by percentage, it probably isn't, it wouldn't be by numbers, mainly because there just aren't enough endocrinologist to make that a possibility. But the situation is that we surveyed, you know, 2000 of our physicians on our user base, and ask them a variety of different questions. And one of the things as you noted that that became clear was that endocrinology was one of the top professions it was the top profession, in terms of utilizing telehealth and it's that isn't surprising, mainly because endocrinologist take care of patients with diabetes, as well as other obviously, endocrine disorders, but it's a very chronic disease, heavy specialty and chronic disease is uniquely amenable to the telehealth platform, because patients with chronic disease need to be seen by their health care professionals on a longitudinal basis of you know, for many years forever. And it is something where you can have many light touches, so that you can have a dietitian who might touch the patient, the physician, you know, diabetes, education, and, you know, runs the gamut. And as a result, because endocrinologist obviously specialize and have more diabetes patients than the average doctor, it stands to reason that they would be the specialty that has been utilizing this the most. We've also noticed in our study, and you may have noticed this that chronic care visits were completed at a higher percentage on telehealth and other regular type visits, more acute care. Stacey Simms 6:38 I'm curious, in the study, do you talk about the quality of these meetings because we've had telehealth this year, my son sees an endocrinologist, every quarter, we sometimes stretch it out, but we see every quarter. And we did one visit during this time that was remote, and it went fine. I had a little bit of you know, I have a we had a few issues, just getting some reports, it was fine. Did you talk about quality at all. Dr. Peter Alperin 7:02 So the study didn't really dive into that I can tell you from personal experience, that you do need to learn how to do a telehealth visit, you need to prep your patients properly. And so it is very, very beneficial if you send patients at least the ones who have not had a visit before on using a telehealth platform to you know the different tips and tricks to be able to make that visit as ideal as possible. And then the physician themselves needs training to make sure that they understand how to interact, look at the camera, the variety of different things. So we didn't go into that in this study. But it is something that I know is important for all physicians and frankly, patients to have to kind of acclimate themselves to that communication platform. Stacey Simms 7:46 Yeah, our biggest problem was the actual reports. My son uses an insulin pump, he uses a continuous glucose monitor, and they have separate reports that are you're able to get online. But you know, we had sent it or the office had called us. And here's the clarity report, login. Here's the T slim report, login. And then the doctor was online. He's like, nobody gave me anything. So I had to give him like my login while we were talking. It was really fun. We've known him for 14 years. So it was no big deal. But it was funny to have to. I think we were also his first visit that way. I'm sure it got better. But it was funny. You know, especially with diabetes, especially with type one, there can be so many technical things, if you're lucky enough to have access to the technology. Okay. Anyway, let's get back to the report. I know it's a little early to extrapolate, you know, from a report like this, but what do you think I mean, in on your network? Are physicians excited about telemedicine? Do they like it? Do they think it's going to continue? Dr. Peter Alperin 8:38 So they do think it's going to continue? And I think they're excited as well. I think there was a little bit of trepidation in the beginning, because it was really thrust upon people. And I think there remains some unanswered questions. So let us sort of let me go into each of those. There's no question that telehealth is going to stay. I mean, we're the expectation is that there'll be $29 billion worth of telemedicine telemedicine visits by the end of 2020, and over 100 billion by the end of 2023. So this is something that is very, is absolutely not going to go away. And it's not going to go away because patients like it. And frankly, physicians are going to like it as well. The reasons that patients like it are is that it's it's quite convenient. And particularly for patients with chronic illness, or patients who have difficulty getting to the doctor's office, it can really be a lifeline. It's much easier to have additional visits over a telehealth platform and then have maybe a quarterly visit where the patient actually comes in to see you than it is to have that patient come to your office, you know, every few weeks, if I'm talking about patients who have you know, particularly brittle diabetes or you know, need to be seen on a more frequent basis for whatever particular reason. I think that if you look at the study, you know that it bears that out with the increase in the in the chronic care visits that you saw, and also just the satisfaction in general. Now, like I mentioned, there are a few kinks that need to continue to be worked out right now. As we noted in the study, the payments for these visits is not 100% certain going forward, although all indicators are that this is going to be made permanent. But you know, if I'm being accurate right now, CMS, for instance, is operating on waivers that allow you to build for the visit in the way that you would want to be able to all as I mentioned, all indicators are that's going to be made permanent. That's probably the biggest sort of thing that remains to be worked out. But private payers seem to be following suit as well. Stacey Simms 10:27 Now, you're an internist. You're not an endocrinologist, but I know you've seen patients, people with diabetes. I'm curious what you think about the missing element of telehealth, especially as it pertains to chronic condition like this. And that's the person that's the in person relationship. And as a parent of a child with type one, as a wife of a husband with type two, the personal relationship that they have with their separate physicians is so important to their care. And well, I think telehealth is great, I would hate to see it take over. Right I really my my son, I were talking about this, and he felt the visit was worthless. It was not we actually made it he's 15. He thinks a lot of things are worthless. But we made basal rate changes, we checked in on certain things. But then when we were able to go back to the office over the summer, he thought it was a much better visit. I don't know from where I stood there was wasn't as dramatic a difference as he indicated. But I think he had a lot to say about it. I'm curious, from your perspective, as the physician, what you think about that, Dr. Peter Alperin 11:27 you know, I think that there's never going to be a substitute for an in person visit full stop. But that said, I think it's like all pieces of technology, the key is finding the right place to use it. Because it's not about the technology. It's about the physician patient conversation and the care that you're delivering. And so the best technology is invisible, right, it disappears. And so that you really it's about that connection that you have. I think that like we talked about in your previous question, there does need to be some acclamation on the part of the patient and the physician in terms of getting used to this. But I still strongly believe that the overwhelming I guess you would call it, the fundamentals of it are really just on the side of telemedicine, it's efficient, you have the ability to touch more patients. Now, one thing that I've thought about is that a telemedicine visit is always easier with a patient that you already know. Yeah. So that's also another reason why I think that in the realm of chronic care which diabetes is squarely in the middle of, you're going to need to have that initial visit with the patient in person. But over time, having a phone call or a video visit is actually fine. Because you know, the patient and the patient knows you, it is a little trickier for an acute care visit, it's just a little bit the physical exam is a little bit more difficult. Obviously, in patients with chronic disease, you don't need to do a full physical exam with every single visit it really, you know, it obviously depends on why they're there and what their particular symptoms are. So I do agree that the inpatient visit will never go away, and, frankly, is probably a more satisfying visit, because I think humans are social creatures, and they really like that connection. But that doesn't mean that the telemedicine is somehow you know, inferior, or it doesn't mean that at all. And it also doesn't mean that that it's not going to stay, it's just going to have to be used in the right circumstance. Stacey Simms 13:11 I hope they keep it in our local office, I think we could see switching our for yearly visits to to in person and to via computer, it was just you know, it's also a 45 minute drive. Yeah, it's a nice step to heart and you have, Dr. Peter Alperin 13:25 obviously in a time of a pandemic, you are running the risk of infection of other people. And obviously patients with diabetes, many of whom are older, the run the risk of getting that infection are at higher risk of covid. And the whole nine yards. And the other thing is, is that you know, even when the pandemic is ending, let's fast forward, you know, a couple years, I still think it's going to be very beneficial for patients, particularly patients who don't have, you know, the means to come to the office that easily. So it's important to consider that as well. Stacey Simms 13:54 I'm curious to one of the things that our doctor talked about was trying and this was way at the beginning, he was trying to figure out how to help patients do the kind of physical exam that he does in the office. In other words, looking at fingertips to make sure that you know, they're not poking the same finger or they're, you know, the fingers are doing okay for blood sugar checks, checking the sites, where a pump inset would go and teaching patients how to kind of do a self check, which a lot of people have never thought to do with diabetes. I haven't checked in with him because as I said, we went back in person and I know they're doing in person visits now. But I'm curious if things like that have come up maybe even in other practices in some of the chats and conversations that you've seen. Dr. Peter Alperin 14:36 Yeah, I mean, both personal experience and then, you know, being at duck somebody I have a unique vantage point on the conversations that occur on our newsfeed where you'll see the you know, the the chatter back and forth about a particular article. The answer is there are great many things that you can do to help with the physical exam and this gets back to again, you know, having the patient be properly prepped, if you will, for that visit. So that they're in a comfortable seat so that there's good lighting, that they have loose fitting clothing, that they're aware of the things that you might do so that they have also, you know, the proper undergarments. So depending upon what the physical exam might be, but there are certain things you can't do like it's very difficult to palpate and do an abdominal exam right over the phone. And it's just it's a tricky part of the any, any physician will tell you, the abdominal exam has always been one of the trickier parts of any exam. It's also hard to listen to lungs, if you will, over the phone. But there are some things you can do. For instance, if a patient's complaining of abdominal pain you and they and their mobile, you can ask them to sort of maybe jump up and down and see whether or not that hurts, because really what you're looking for is a sudden jar, far from the exam that all of us learned in medical school, and probably far from the same level of sensitivity and the ability to diagnose things, but it certainly can help. But that's where the importance of triage comes in. And that's why having a front office that can understand when a patient needs to come into the office versus not come into the office is important. And look, I've converted telehealth exams to in person ones where I've said at the end of the conversation, you know, this was great, but I think I still need to learn more, why don't you call the office and find out if there's a time you can come in in the next week, then that kind of thing. You know, it is being taken up by physicians of all ages. And I think that was a really interesting finding that, you know, typically technology is always adopted more more quickly, among younger people just across the board. Here's a case where that's not true, where it's physicians in their 40s and 50s, who are actually taking to telemedicine more quickly than physicians in their 30s, then one of the reasons that we think that that's true, is that physicians in the 40s and 50s are the busy physicians are the ones who see the, I hesitate to say in this in the those salad years of their life where they're raising families, and they have, you know, mortgage payments and life. And so they're working more, I also perhaps think that their practices are bigger, they're more comfortable with their patient base. And it...
/episode/index/show/diabetesconnections/id/16626767
info_outline
The Amazing Race: Leo Brown's Unique Diabetes Story
10/27/2020
The Amazing Race: Leo Brown's Unique Diabetes Story
Meet Leo Brown from this season of The Amazing Race! He lives with diabetes, but his story isn’t a typical one. Leo was born with congenital hyperinsulinism, where the body makes too much insulin, and had almost his entire pancreas removed. Leo will share his unique story and tell us about running the race with his girlfriend, Alana. In Tell Me Something Good, babies! Weddings! And a football first for someone who’s been kicking t1d every day for a long time. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo Pen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:23 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, meet Leo Brown, a contestant on this season of The Amazing Race who lives with diabetes. Now on the show, he's racing around the world with his girlfriend, Alana, but they had what could have been their biggest setback before the race even got started. Leo Brown 0:42 I think I was actually on the flight to LA at the start line. When I realized I had left all my insulin at home. There was one thing I didn't remember it was in the fridge. It was lined up like little soldiers. Stacey Simms 0:57 Oh my gosh. Well, Leo's story is not a typical diabetes one. He was born with congenital hyperinsulinism, where the body makes too much insulin and had almost his entire pancreas removed. He developed diabetes at age 19. And he'll share his unique story and tell us about the race In tell me something good babies, weddings, and a football first for someone who's been kicking T one D every day for a long time. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I love The Amazing Race. I started watching when I was pregnant with my daughter Lea. And that was 19 years ago, I realized that talking to Leo and doing this episode Oh my gosh. Anyway, welcome. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed almost 14 years ago, when he was a toddler. I have a background in broadcasting and that is how you get the podcast. It has been two years since the last version of The Amazing Race aired and I really have been excited to see it come back. It's just great to see people traveling again. As soon as the first episode of the season aired in mid October, my eagle eyed diabetes friends started posting photos of Leo at one point he's playing the steel drums and you can clearly see the Dexcom on his stomach. I like many of you jumped to the conclusion that he lives with type one. But it turns out his diabetes story as I've already teased a bit is very unique. And we'll talk about that with him in just a moment. But first Diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes. For people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor's visit. Your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more. My guest this week is Leo Brown from Season 32 of The Amazing Race. His partner on the race is Alana Folsom, they have been dating for less than a year when the show started. And they're now married. So we don't know how they did on the show. But that's a great outcome already. Leo and I recorded this interview over zoom and there is a video version which I've put on the YouTube channel. And that's just Diabetes Connections over on YouTube. But there's two things you need to know as you listen, the audio is a bit sketchy here and there, Leo and Alana upgraded their Wi Fi during the interview. Literally during the interview, she called and got the Wi Fi upgraded we stopped and started a bit before that happened. I took all of that stuff out. But you can hear some stuff here and there. And if you see the video, you will see the shirt that I am referring to as we start out here. But if you're only going to listen, I promise you will get the gist. Leo, thank you so much for being here. I appreciate you spending some time with me tonight. Leo Brown 4:23 Thanks for having me excited to have a chat. Stacey Simms 4:26 All right. Well, first of all, I have to ask you about your shirt. Because I saw that hashtag on Twitter that you guys were using. What is beloved lovers? I wanted Unknown Speaker 4:35 to hear you say it first. Stacey Simms 4:37 Wait, let me do my radio voice! Tell me about – beloved lovers. Leo Brown 4:41 Oh, absolutely. So Alana I got married over a month ago. And we have a Ketubah which is a Jewish wedding contract. And in a traditional Ketubah it says you know the man this and that husband this wife that right and We wanted our Ketubah to be egalitarian. And we didn't really see a need to indicate our gender. But that's not really what what relationship is about. And so we talked to our Rabbi who's extremely, you know, open minded and accommodating. And he came up with some text that is egalitarian. And the translation from Hebrew to English was beloved lover, and really like that. And so in the in the wedding, which we live streamed, because we couldn't invite most of the people we wanted to, because the COVID, he explained that and there was a live chat on the YouTube live stream that was happening, everyone was like, beloved lover, and then they started writing hashtag beloved lovers. And then I think somehow that got picked up by some news source that like follows Amazing Race, or it was like doing some promo about Amazing Race. And so when they were introducing the teams, and it was just this little this article that got that was going around, they said, Will and James dating Hung, and Chee married Leo and Alana lovers. And so our cast has all had already kind of decided since our wedding because they had all called into the wedding that we were having, like beloved lovers. And so we went with that. And this is our beloved lovers shirt on the back and says Leon & Alana, and a little globe, that is where beloved lovers came from our relationship and our wedding. Stacey Simms 6:25 So okay, my husband and I have been married for 21 years. I'm making a note for our when we renew our vows for our tuba, maybe at 25. Oh, yeah, back and change the language Leo Brown 6:35 as a couple that had to severely downsize our wedding. We are strong believers in renewing vows, or just having another wedding whenever you feel. Stacey Simms Well, you know, weird way you kind of put the honeymoon first with The Amazing Race. So let's talk about that. Because you both were I mean, I didn't know if I could ask you about your relationship, just because you're never sure on the show. I've seen I've watched the show for years and people are dating that they break up before the race even ends. Or maybe they stay together. Well, obviously, this had a really happy ending. But take us back to the beginning. When did you all decide to sign up for the race? You were just dating? Leo Brown Yep. So we met on Tinder in January of the year of the race. And then on our second date, I think we were watching The Amazing Race with my roommates at the time because they were fans and a lot. I was a fan and I hadn't seen an episode or two. And that was the first time when it was my roommates who said you better be great on the race. And I thought yeah, sure, I think we could be and, you know, nothing else really came of it. And then six months later, Ilana and I moved in together, I think it was our second night of living together when we had it. All right, let's make this video. Let's send it in. Let's see what happens. And that was in July. And then a couple weeks later, we got a call from casting. And then over the course of the summer and fall that we went to LA a couple times. And then the start line was our 10 month anniversary. So that was a that was a really fast and an incredible progression that we weren't expecting, Stacey Simms 8:11 we will return to the Amazing Race to your relationship to your reading lots of questions there. But tell me about your experience with diabetes. Very unique. What happened? Tell us your story. Sure. So I Leo Brown 8:23 can start long before I knew I had diabetes. Because I wasn't diagnosed with diabetes till I was 19. As an infant, though, I was diagnosed with congenital hyperinsulinism, which I always explain as kind of like the opposite of diabetes, instead of making not enough insulin, I made way too much. So it's a rare genetic condition that you're born with and usually presents at birth. And it's an emergency, once you're born, you have low low low blood sugars. And one of the biggest challenges is that doctors who delivered you and you know, like neonatal care doctors might not have ever heard of congenital hyperinsulinism. And to make matters worse, infants sometimes have low blood sugars, as like a natural and okay thing. And so many parents, including my own then are told initially some version of Oh, that's nothing really to worry about. And the story you hear time and time again from these congenital hyperinsulinism parents is I knew something was off like I'm not a medical professional, but my child needs help. And in my case, will that eventually led was to subtotal pancreatectomy ease. And so the first one was when I was six weeks old, and that was like 95% of my pancreas was removed a big scar across my stomach from that. And then when I was six months old, much of remained was also removed in a second subtotal pancreatectomy and after that, by the time I could remember, basically, I have like very early memories of my blood sugar being tested because my blood sugar was of interest at that point, everyone needed to know what it was and why it was okay. And for the first couple years, my parents had to do a lot to help manage that. And lots of doctors involved and try different drugs and eventually figured out something that could sort of stabilize my blood sugar and help me start to live a normal life. And by the time I could remember, I pretty much did live a normal life. You know, I went to kindergarten like any kid, I had a scar, I had a second scar from a feeding tube that was called my second belly button, because I have an outie. But then there was this any nearby. And as life went on, I felt very much like a normal kid who had this, you know, this complicated beginning, but I thought that was all kind of behind me. Stacey Simms 10:56 But let me ask you before you go on, and I'm sure your parents have shared with you what actually happens when when a child is born with low blood sugar? Like you said, it's not as though something they're not often looking for that kind of thing. And it's extremely dangerous. Do they just are they poking your fingers when you're an infant? Or the you know what happened? Yeah, Leo Brown 11:15 my parents may remember, even better memories than I do. But I know that you test a baby's blood sugar at, you know, most hospitals, good hospitals when they're born. So I mean, I think that tests This was 30 years ago. So longer, or like longer land sets, but generally a lot has remained the same in in that you test a baby's blood sugar. And if it's low, if you're lucky, someone says, Yeah, could be serious. It could be totally fine. But I think they had a lot of experience testing their tiny baby's blood sugar. Stacey Simms 11:54 Did you go I guess my question is, did you go home? And then have these emergencies where you had to be re, you know, brought back your parents didn't know what's going on? Or did they know before they even left the hospital? Right back to Leo, answering that question and explaining more about congenital hyperinsulinism. But first, Diabetes Connections is brought to you by Dexcom. It's hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes, that's a wonderful thing about share and follow as a caregiver or parent, spouse, whatever, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom, follow separate follow app required, Learn more at Diabetes connections.com and click on the Dexcom logo. Now back to Leo, who by the way, has a great Dexcom story later on in the interview. Oh my goodness. But here, we are talking about his parent’s early days of his very scary diagnosis. Leo Brown 13:04 I believe my parents didn't have a clear diagnosis before I was discharged at the very beginning. And then within weeks, if not days, I was brought back, you know, they said he's having, you know, he had a seizure. He's not getting better, like this low blood sugar thing is, is here to say and I I'm again, my parents would have a lot more to say. But at some point, they were equipped with a blood sugar testing kit to you know, check me regularly at home. But I think that within those first couple of days and weeks, they quickly discerned that something was off. My parents used to have this box and at some point I said I need the box because once in a while I need to be able to explain to people not in an interview, but in a doctor's office what exactly happened. But yeah, it you know, it from what I know congenital hyperinsulinism and other stories I've heard from other parents, honestly, that I can tell you as much about that as my own early early story. The prevailing pattern is that the parents are told that the low blood sugar is not something they need to really worry about, because babies have that sometimes. And right, a large part of what the community and an organization I'm working with congenital hyperinsulinism International is trying to help medical community understand is you need a checklist saying this could be congenital hyperinsulinism. Obviously research for early diagnosis, treatment, but early diagnosis is in some ways more important because if people aren't looking for it, then it is a you know, it's a very rapid escalation. As you can imagine. It's just like if you were getting injections of insulin that you didn't ask for. Stacey Simms 14:54 Yeah, scary stuff. Yeah. So you have these operations. You're growing up just fine. But you have been told your family's been told that you will eventually most likely develop type one diabetes or something that's very similar. Leo Brown 15:06 Actually, that didn't become what people were told until more recently, this, I think, has to do with better research and sort of documentation about the progression of the disease also, as early treatments have become more effective, and there's still a long way to go there. I'm you know, most people don't get to go to kindergarten like I did without some sort of special needs. Or even just like having a continuous glucose monitor, right? You might not be I mentioned special needs, because like, as soon as your blood sugars are low, you could have that could affect your brain in some way. But also, even if you don't have that consequence of the low blood sugars, you might still have a lot of trouble controlling your blood sugar's early in life or throughout your life. And so the fact that I didn't have any of that, from nursery school, kindergarten and on through the beginning of college is sort of unusual. But to your question, my parents were not told that I would get diabetes, part of the reason, I think is because my pancreas was making so much insulin, there was a thought that removing just the right amount would lead to me being just fine. Or, you know, you might not remove enough like, I might still have low blood sugars, like there was no assumption that I would have diabetes, although my understanding is more recently, that's become more of a an assumption that like you do this type of operation. And then no one knows when, but eventually you will have diabetes, Stacey Simms 16:38 or and now I have one more dumb question or the surgery for we move on. I know, everybody wants to know about you, and the Dexcom and The Amazing Race, right. But I'm so curious, we think about the pancreas, and I think most people in the diabetes community understands that it's not dead, you know, it didn't stop doing everything it's supposed to do. But we don't think about it as doing anything much more than producing insulin, you have like this much of a pancreas left, and you have been living this happy, healthy life, even though we're gonna talk about your diagnosis. Are people generally surprised when they hear that it's, it's more of an education for you to do? Because I gotta tell you, when you told me that, I thought that's not at all what I felt what happened? Leo Brown 17:13 Yeah, I wish I could read the logs of my pancreas to tell you exactly what it's doing and what it's failing to do, like if you were trying to debug it. And, you know, there's not an easy way of getting in there. And and finding that information. I mean, you really would have to, you know, I engage any doctors I encounter and try to get those kinds of answers out of them. Like, what is it that my pancreas is not doing? Like, I know, it produces all sorts of hormones, other than insulin, I don't have the background to even ask the right questions, right. But all I can say is that with a little bit of pancreas, you can get a little bit of function. And I guess enough such that I don't I'm not diagnosed with anything other than diabetes. But it is a great question. And there's not a ton of patients to do this research on. Nor is it something that you'd want to interfere with someone's life to do research on, like, you were to poke around in there, like you could cause a problem. So on some level, you kind of just keep an eye on it. But one thing I do quickly want to add is that my parents and I, after I was diagnosed with diabetes, we were really kind of kicking ourselves like, doesn't it make sense? You took my pancreas out? Why didn't anyone mentioned that? This could just it seems like common sense. I mean, not I'd never thought about diabetes before. But my parents had certainly thought a lot about blood sugar. And they were like, course, like diabetes? Stacey Simms 18:43 Nah, I gotta say, in everybody's defense, I think I would just be very happy that my baby who was going super low, all of a sudden, they figured out was wrong. They fixed it. You went to kindergarten, if the doctors aren't telling you why we're going to Leo Brown 18:57 we think, clear. And you know, we weren't testing my blood sugar after I was, you know, in first or second grade, like...
/episode/index/show/diabetesconnections/id/16535813
info_outline
Diagnosed On Halloween: Kelly Kunik Marks Four Decades with T1D
10/25/2020
Diagnosed On Halloween: Kelly Kunik Marks Four Decades with T1D
Halloween can be a challenge for many families touched by diabetes, but just imagine beng diagnosed ON Halloween. That's what happened to Kelly Kunik in 1977. In this "Classic" episode from 2017, Kelly shares her story, her family's unique experience with diabetes, and what led her to Listen to our ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription: Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by the world's worst diabetes mom real life stories of parenting a child with type 1 diabetes available as a paperback ebook and audiobook, read reviews and get your copy today at Amazon or at Diabetes connections.com. Announcer 0:24 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:30 Welcome to what I'm calling a classic episode of Diabetes Connections. This interview originally aired Halloween week of 2017. But it's a really good one. And we have a lot of new listeners and a lot of people who might discover it now for the first time. So if that's you, Hi, I'm your host, Stacey Simms and my son was diagnosed with type one almost 14 years ago as a toddler. And Halloween this year is going to look very different just like everything else in 2020. But I hope you find a way to celebrate Halloween that is safe, that feels good to your family. And as always doesn't let diabetes get in the way. If you have questions about Halloween, if you are newer diagnosed family or you just are confused, you want to try something new this year. We did a great ask the D moms episode about that. And I will link that up in this episode homepage, you just go over to Diabetes connections.com. And when you see this episode, click on it and it will have a transcript and it will have links and one of those links will be over to that ask the D mom episode where me and my friend and wonderful author McCarthy give advice. We get questions all the time and we answer them the best we can we did a whole episode about Halloween. My guest for this episode is all about Halloween. Now. Not only was she diagnosed on Halloween, but she loves the holiday you're going to hear her family. I mean, they do it up big and they always have Kelly Kunis was diagnosed with type one in 1977, 43 years ago. And yes, you really was diagnosed on Halloween. She is a diabetes advocate mythbuster consultant, writer and speaker, Kelly launched her very funny and insightful blog diabetes deliciousness in 2007 with that goal of busting diabetes myths and spreading validation through humor and ownership and advocacy. She is also a daughter, sister, cousin, niece and and to people living with type one and type two diabetes. That incredible family experience really gives her a unique perspective. So here is my interview with Kelly Kunic on the eve of her 40th diversity with type 1 diabetes. Kelly, thanks for joining me, you're one of the things I get a lot in parenting groups that I'm in is you know, what do I do about Halloween? And so we're gonna be talking about that this week. But I thought it would be really fun. And so just a good excuse to talk to you. To find out more about being diagnosed on Halloween. I shouldn't have said it'll be fun. It's always fun to talk to you, Kelly. But that's not fun at all. Thanks for coming on with me. Kelly Kunik 3:11 Well, thank you for having and thank you for doing what you do. And I think Halloween is an excellent topic. Stacey Simms 3:18 Yeah. Tell us your story. You were diagnosed. And I can't believe as we're talking here. You're kind of on 40 years for your diagnosis. Kelly Kunik 3:25 Yes. Yes, I am. And that's crazy. And I can't believe it. And I just as shocked as you are. But yes, it will be 40 years with, you know, celebrating my type 1 diabetes diagnosis on Halloween. And it was interesting. And what I remember a lot of it, tell us, I just remember a lot of whispering that week with my parents and my siblings. You know, I have siblings who, who also have type one. And my dad had type one. And, you know, Halloween every year was a pretty big deal in our house. And it was up to my siblings to come up with my Halloween costume. or help me come up with it. Because there were so many of us. And I couldn't get them to commit. And I remember coming home from school one day, and my sister Debbie, who had diabetes and who had passed away from diabetes met me at the door. And she asked me if I was thirsty. And I was of course, and she gave me a tab. And I download it. And then she asked me if I wanted another one, which of course I did. And I download it. And then she asked me if I wanted another one. Stacey Simms 4:44 And we're talking about tab the diet soda because just to be clear, right? I mean, right? Kelly Kunik 4:49 That right tab the diet soda and I drank the third one and then of course I had to go to the bathroom. And she said well drinking I'm not going to let you go to the bathroom, unless you pee on this test tape, which was a way back in the late 70s to test what your sugar was. And I was smart enough to know that that wasn't a good thing. Because there was test tape in all of our bathrooms, because of my two sisters with type one and my father, and I looked at my sister and I told her I didn't have to go to the bathroom. Oh, geez. And I was a pretty stubborn little girl. And I refused to go to the bathroom for like an hour. And I was dying at that point. Like I literally was doubled over in pain, but I knew that something was up and that if I peed on that test tape, something was going to happen that I didn't want. And I finally you know, I did I like I said, I would do it. And it turned to color it shouldn't have. And there were lots of whispers. And I remember my parents being on the phone with CHOP children's hospitals, Pennsylvania that night. And it was the night before Halloween. And I don't really remember a lot. But I remember the next morning we got up very early. And we drove to Philadelphia to CHOP. And I remember waiting in the registration office to register because as a patient because we'd never been to chat before. And then the physical exam. And I remember them hooking me up with an insulin drip. And I was trying to make my parents laugh. So I called it the Alaskan pipeline. Like luck bomb. It's the laughter pipeline. Look at me, I have my own Alaskan pipeline. But I really wanted to go out trick or treating. I wanted to go out and costumes, you can talk of all these different costumes I could wear and I love Halloween. Not just because the candy. I love dressing up in costumes. That was kind of my thing. As a kid. I was always dressing up in costumes, like if I could have gone to school in a cape. But back in the 70s it wasn't really acceptable. I was constantly dressing up in costumes. And I tried to convince a nurse who was dressed like a clown, that the results were inconclusive. Again, I watched a lot of television Stacey Simms 7:25 you're waiting to hear. You're eight years old. You're trying to tell that the medical professionals around Yeah, because maybe it's not, you know? Kelly Kunik 7:32 Well, I I used to watch Quincy, on answer Carol Burnett. Yes. And so I was I was just like, repeat everything that Quincy would say, I'd like to think the tests are inconclusive. And he just let me go out trick or treating. I promise you, I won't eat any candy. And my parents will bring me back tomorrow. But I have all these costumes lined up. And she looked at me and she said, Oh, honey, the tests are inconclusive. You have diabetes. And no one had said that. I said, Oh, okay. I guess I have diabetes, like okay. And I didn't really think that's when I started not to like clown so much. Yeah, and I remember them telling me that I could go trick or treating in the hospital. They could provide me with a costume, which was subpar. There was no way I was walking around in this costume. They had no creativity behind them at all. And then I could only get dietetic candy. And I was like, nope, no, thank you not doing that. I know what that is because of my sisters. There's no way I know, your stomach. You know that? What does to your teeth? I'm not doing it. And so I stayed in and watch TV, you know, and kind of waited till my parents left to lose it a little bit because they didn't want them to get upset. I could tell that they were upset and I didn't want them to get any more upset. Stacey Simms 8:55 Tell you so much to talk about that you've said already here. But it strikes me now you've said a couple of times that you're trying not to upset your parents. You know, I mean, you were eight years old at the time, your perspective is different. It's your dad has had type one. You had other people in your family, sisters, other people in your extended family. Why was it so important to do you remember, it's just amazing how we try to protect the people around us. They didn't mean protecting you did you're though, you know you were the little kid. Kelly Kunik 9:21 I think I knew from a very early age. I was one of six children. It was not necessarily a common household. You know, the six kids there were two parents. There were various extended family grandmothers great uncle's living with us, which was wonderful. It was a great way to grow up, but I knew the diabetes. I didn't know exactly what it was. But I grew up with it, if that makes any sense. And I knew there was a stress level involved with it. Even though I didn't understand it. I knew that some of my siblings and my dad would take needles at the table. Before they ate, I knew that our bathrooms were sort of set up like a lab with test tubes, and things like that, because they didn't test blood sugar back, then they tested urine. And your insulin was very, very precious, and a bit expensive. And I just knew that I like to make people laugh when they were stressed. And I think when you're the youngest child diabetes or not, that's kind of the thing. Just sort of become the comic. Because everybody's watching what you do. You're the youngest, baby. Oh, isn't that cute? She's so funny. You know, and I knew I couldn't articulate it. And I couldn't explain it. But I knew that it was big for my parents, this diagnosis or whatever was going on, because I couldn't even articulate it like I am now. But I knew that I knew they were sad. And they were trying to act like they weren't. You know what I mean? And I knew that for a fact. So I was trying to make it easier for them. And look, kids are smart. They just are, and they see, and they handle things in certain ways. And, you know, when you see your dad who's, you know, trying to keep it together, you want to make it easy for him. Especially when it has to do with you. Stacey Simms 11:24 It just, it's amazing to me that and you're right kids know, they are much smarter than I think we give them credit for and even Benny at two was trying to make me feel better. You know, it's as hard to see your parent be upset. And that's it. You know, a kid wants to fix that most of the time. So even he do and that's what it is. Yeah. Unknown Speaker 11:42 So So what happens on a Halloween, Kelly Kunik 11:44 I stayed in and watch TV. I mean, I, I wasn't going to go out trick or treating in the hospitals. I had to have diet like guy they called it dietetic candy when I was throwing up. It's what it was called. And it was disgusting. And it caused a lot of gastrointestinal distress. And they had something like a jolly rancher type of dietetic candy that would make your teeth stick together. For like, five minutes, while it melted in your mouth, you could not separate your jaw. And I'm not kidding. It's God's truth. And it just wasn't worth it to me. I had tried this stuff, because my sisters would get it in their Easter baskets, or, you know, family friends would bring it over for them. And it was disgusting. And you know, when you're little, you don't know the difference. And you're like, oh, Chocolate, right? And it really did cause a lot of problems. And I knew that. Like, I mean, you learned it very young. Yeah, I didn't even have diabetes learned it is not good stuff. So I was like, I'm not a I don't have my costume choices with me. I'm not wearing these drugstore. Like I have a closet full of homemade patterns that are very good. And I'm not chick retreating. And working so hard for this disgusting candy. Most of it Stacey Simms 13:10 was it was Halloween. Was Halloween ruined for you or the following year? Don't you dig out one of those costumes if I wake up? Kelly Kunik 13:19 Oh God, I went to I never missed a Halloween growing up. The rule was like every other kid, I will give that credit to my parents. I never missed the Halloween. I went out with my pillowcase. Because that helped more. And we trigger treated for hours. I would eat some candy while I was trick or treating because we were walking like three miles. And then I came home, went to the living room, dump the pillowcase on the floor. Did the division like all the kids do? Candy? Like they like candy. They don't like candy. They would consider trading money. Because people would throw in nickels and quarters, boxes of raisins, which immediately hit the trash. And my mom would say, yeah, it's I mean, it was like any other thing. My mom would say, okay, what's the candy you wouldn't keep? And she would keep it. And we would figure it out like when I could have it. And then in a week or two, somehow that Halloween candy would disappear. Sometimes my mother would hide it after a few weeks in the top of her closet, or on top of the china cabinet, which kind of dipped in so you couldn't see what was laying on top she would put it or those cabinets on top of the refrigerator that holds nothing and are really hard to get to. But after a few weeks, just slowly disappear. And she'd say your your siblings ate it. Daddy must have gotten into it. You know my mother was a Chocoholic. I mean, but we always had fun. I always went out with my friends. And I give my parents a lot of I remember going to like Halloween party. somewhere maybe in fourth grade, I don't remember. But there was a cake. I think my mom even brought it. I think my mom bought a cake was ghosts on it was a big deal. And the ghosts were made out of icing. That was toothpicks. And I remember like, I won't want to go, but they didn't see I couldn't. And that was really smart of them. They didn't make it a bad day. They made it a fun day. It was a fun day. Halloween fun. They kept it that way. Stacey Simms 15:28 Just wonderful. And it's just so great to hear. Did you have a favorite costume over all those years? Kelly Kunik 15:33 Except that oh my god, are you kidding me? I was a gypsy, which was actually my mother's mother's costume from a Gilbert and Sullivan. Oh, she was an orator in England. So I had this beautiful like corseted top, that all the girls were in my family. And we I was Gypsy and I had a scarf and a big skirt. I was tigerlily for like two years in a row three years in a row. Maybe because I was obsessed to Tiger Lily did not like Wendy Darling. I could not relate. I thought Wendy Darling was a whiner. He thought Tiger Lily was a badass. And she kind of looked like me a little bit long, dark braids. And I have long dark braids. But she's who I related to. And I was her for two, maybe three years. I was a jack in the box. One year I won an award for that. most creative con. So yeah, I mean, I love Halloween. I don't. I think it's a great I still think it's a great holiday. So I don't know. Yeah. And I don't like when people and I understand why they say it. I shouldn't say I don't like but I always tell people to mine their words, when it comes to diabetes. Like Don't let your kids know that you're dreading it. Because it really is a fun hot day. But it's great not to be you for a night. You know what I mean? diabetes or not? Like it's going to be a challenge. But today they give away much more prize related gifts today than they ever did when I was growing up. And look, we are black that we can count carbs today. Nothing is off limit. Well, let's Stacey Simms 17:12 talk about that. Let's go on. Let's just you know, we'll get on the soapbox for a minute because Kelly people who know you sure you have opinions. opinions are welcome. I have a radio friend who says agreement is not required. So let's let's just talk about it. You can say whatever you want here. Because as a parent of a kid with type one. Halloween is is scary and is your oh my gosh, everything's got to change. It says how do I do this? And then I have actually found if I could talk about me for a minute. The hardest part for Halloween for us has always been my well meaning neighbors, because I have a daughter who's three years older than Benny. And since the time they were very little we did Halloween just like you guys did. We get all the candy we put most of it away even without diabetes, you're gonna throw half that candy away or give it to the truth is the dentist or whatever. So my neighbor's bless their hearts. You know, those first couple years, they would say here's a Hershey bar for Lea. And here's a sugar free hard candy for Benny, you know, like, Oh, right. And I'm not letting my two year old eat a hard candy anyway, Unknown Speaker 18:13 but Right, right. Stacey Simms 18:15 Yeah. And some of them did have little prizes. I mean, I have one neighbor who always has a little toy for him. Like, you know, Penny toys is so cute and so nice. And I never said to people, you know, at the door on Halloween. No, thank you. We're not taking that sugar free candy. But you know, maybe a couple weeks later, when you're seeing them at the grocery store elsewhere, you can kind of work it into the conversation. But I always tell parents just go and like you said, you're walking so much half the time that they go low when they're out there, right. Kelly Kunik 18:44 Yeah, I mean, like when I said I walked three miles at night, my hometown was only a mile long. Again, like, not really big, but we walked so much and for so many hours that my parents encouraged me to have that Chocolate bar because they knew I really needed it and I wasn't you know, when I was little to treat a low we would eat an orange. My mom didn't even bother cutting and wrapping an orange in tin foil. She said no, she's going to have she's gonna have a Reese's Peanut Butter Cup and she's walking around because she's gonna need it. But like you I still get asked you know, can you eat this Is this okay? And I always tell people like there's not too much I can eat I don't eat liver. They won't eat liver. So Stacey Simms 19:28 not even with not even Chopped liver. No, Kelly Kunik 19:32 no, I don't like it and you know, I know that I probably should like it because I run a little bit on the anemic side. I have my whole life but I can't stand liver. But yeah, I'm like the only thing I can't eat is liver. You know everything else is Game on. Oh, and like you said like diabetes or not divide the candy up and somehow it disappears the next few weeks because nobody functioning pancreas or not eating all of that candy. Just Can't nobody can adult child a child with diabetes, don't diabetes, anybody, people, it's just too much sugar. But, you know, I'm sure you talk to your neighbors and tell them something similar because I don't know, it's really great to have people thinking and looking out for your kids. But sometimes what they're trying to do like, for me, personally, I think there's a lot of damage with the sugar...
/episode/index/show/diabetesconnections/id/16528895
info_outline
Ask The D-Moms: Finding Reliable Diabetes News Sources
10/20/2020
Ask The D-Moms: Finding Reliable Diabetes News Sources
This week Ask the D-Moms is back, answering a very different kind of question. How do you know what diabetes news is reliable? Moira McCarthy and Stacey both have backgrounds in professional news media. We’ll talk about medical studies, news sources and, community & social media info. In Tell Me Something Good what do prescription swim goggles have to do with diabetes? Nothing really, but it ties into a new realty tv contest where we spotted a Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvokek Hypo Pen the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, ask the D moms is back answering a very different kind of question. How do you know what diabetes news is reliable? Moira McCarthy and I both have backgrounds in professional news media. We'll talk about news sources, medical studies. And as Moira touches on here, community info. Moira McCarthy 0:47 When you're delving into that kind of anecdotal sharing, everyone is right, and everyone is wrong. Some things speak to some people and some things speak to others Stacey Simms 0:59 in Tell me something good. What do prescription swim goggles have to do with diabetes? Nothing really. But it's all about a reality TV contestant you're gonna want to follow. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I am excited about this episode I love every week, of course, this one where more and I get to break down from our personal experience, what we think of what's going on news business, how you can better use information. This is right in my wheelhouse. And it's one of the reasons why way back when I started this podcast, hey, if you're new welcome. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, almost 14 years ago. And it was really almost six years ago that I decided to start the podcast and did a lot of research. And it really took me until almost a year later to get it going. We started in June of 2015. But what brought me to start the show was that I listened to a lot of podcasts. I've listened to podcasts since I don't know 2005 2008 way back when when you had to actually plug your iPod into your computer and download the shows. And if you don't know that's where podcast comes from the actual iPod was the only device you could do it on way back when and I'm sure somebody with Android will correct me and it was all about mp3. But you know what I mean? That's where the word comes from. But I would walk my dog and drive in my car and listen to shows with people who had incredible personal stories about diabetes. There were so many really good personal experience shows people talking about their diagnoses, just talking about day to day some technology stuff, but nothing that was a conversation that was from more of an informational standpoint. You know, it was basically nobody was asking the questions that I wanted to ask personally. And the great thing about podcasting is, if you don't hear what you want to hear, if you notice something is missing in the niche, or the community, you can jump in and start your own show, which is what I did. Of course along the way, I give you a little bit of personal information. Although the show is definitely not all about my family. I have been mentioning lately that we were supposed to go see Benny's endocrinologist and we went in the beginning of October, then he had his lowest A1C ever, which is of course fabulous news. If you are new to the show, we started the control IQ system from Tandem in January. And we have watched him spend more time and range with less work all year long. It's really been amazing to see I give him a ton of credit. Of course, he still has to do a lot of hard work that goes along with it. He is far from perfect. God forbid I say nice things about Benny. But really, he's doing great, but it's still really is a lot of work. And you know, you have to wear all the devices. So I give him a lot of credit. I give all of you live with this an awful lot of credit, you know that. But boy, it's amazing to see that time and range go up, and the actual bolusing and the nagging for me down. It's been phenomenal. He also grew a little bit more, which makes him very excited because he is afraid he is done growing. Of course, he's been taller than me for a while now. We also talked with the endo about insulin. And if you've been following on social media, or if you're in the Facebook group, you've seen me talking a little bit about this switchover, my insurance has us going from Humalog to Novolog. And I'm going to talk about that at a different episode. I did hint about that in the bonus episode I put out last week and I'm not trying to be cagey. But I want to give you the total context. There's a lot going on with this. And I want to make sure I get everything right and get all the ducks in a row before I tell you the whole story, which is a good segue into news and to sharing a good and accurate picture. So I promise more to come on our insulin front as soon as it all wraps up, fingers crossed. All right. So with everything that's going on these days, I thought a show about news and information how to know whether your source is reliable. are worth listening to her, okay to ignore would be very timely. We're really only talking about diabetes news here. But that's almost more difficult because it's one of the few conditions that you can think of where we rely so much on community support and information from each other. Because we get so little time with health care professionals and diabetes is 24. Seven. And while so much of that peer to peer and community support is wonderful and helpful and is supportive, a lot of it is inaccurate or outdated, or it doesn't apply to you, or it is actually harmful. So we're going to talk about it. Of course here to join me on Ask the D moms, as always is Moira McCarthy, a fellow diabetes mom, of course, and a fellow news professional, if you are new, we will also tell you about our backgrounds and why the news media, which everybody hates right now is so important to us. But first of Diabetes Connections is brought to you by One Drop, and it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the slickest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime, instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention, they're awesome test strips subscription plans, pick as many test strips as you need, and they'll deliver them to your door when dropped diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo. Hey, Moira, it's always great to talk to you. How are you doing? Moira McCarthy 6:39 I'm doing pretty well. It's always good to hear your voice how's things down in the warmer part of America, I am looking out at the beginning of foliage. And all day here in Massachusetts. I always Stacey Simms 6:50 laugh because I am in Charlotte, North Carolina. Growing up in the New York area. I grew up just outside of New York City and spent a lot of time upstate New York. It's so funny here because there is beautiful foliage in places. But the season is so different. The first year we had kids and I wanted to go apple picking. I was all set in October. I was like cuz I spent you know, my childhood, going apple picking in October and the crunchy leaves and the crunchy apples. And they were like no, no, you have to go apple picking in August. Moira McCarthy 7:16 Oh my gosh, that makes sense. Like that. Stacey Simms 7:21 It is but it's gross. wants to sweat while you're picking apples. Yeah, no, no. But I'm glad New England must be beautiful. Unknown Speaker 7:29 And as it's my Moira McCarthy 7:32 favorite season, it's one of my favorite seasons I enjoy. Stacey Simms 7:37 All right, so interesting topic this week. And we're gonna stick on one question pretty much the whole time here on the D mom's. And that's about news information, how we know kind of who to trust in this community? How do you know what information to trust? And before I ask the actual question, I think it's important to back up and kind of talk about our experience, because I think it's one of the reasons why we're friends. Moira, and I have an awful lot in common, including working in the news business more, take me through your your experience. But I mean, all kidding aside, you've been a journalist for many years. Moira McCarthy 8:10 So it's funny you asked because I was visiting the Newseum, which was a wonderful Museum in Washington, DC that just closed down about the news industry. They have a whole of technology, like all the technology from the beginning of time, and I said somebody's daughter, oh my gosh, I'm so old. And I've been a journalist for so long that I've used three quarters of the hall of technology. But I am, you know, I just want to start with that. I think it's if it's okay, I think it's really good to kind of stick up for my profession right now. Because it's been a rough couple of years, I guess. Now I know what it's like to be a lawyer. You know, I've run you always say the lawyers were all liars. But um, journalism for people like me, is a vocation. It's what I always wanted to do. And when I went to college, I didn't just learn how to write, we learn how to it's called the canons of journalism. And we actually learned how to be responsible with our information and with our sources and everything else. And it's something that I carry with pride. And I just want people to know that when you're dealing with true journalists, people who work in the field and we're trained in it, you really are dealing with people who are trying their best to give you you know, the truth. And in fact, so that's, that's just my little stick up for journalism thing, but I am, I was the editor of a group of 23 newspapers when I was about 21 years old. I went on to be a full time crime reporter and bureau chief for a daily newspaper for about 11 years. And then I went to work for the New York Times doing adventure travel, which I did for a good long time. And now I am the travel editor of a newspaper in Boston called the Boston Herald and I also do their ski section and it can be contributing editor and writer at ski magazine. But my new exciting thing is for about a year and a half now, I've been writing as a medical journalist for helpline media. So that's where my background is with a lot of other things in between. Yeah, tell us yours Stacey Simms 10:14 Sure. And I will also stand up for my profession, by adding by adding that journalism is the only profession singled out in our country's constitution. It is an incredibly important part of our government, and country function. And my personal feeling, and you know, you can disagree with me on this, as you listen to more as well, is that most people who are angry at journalism are angry at talking heads and opinion pieces. And the line has just blurred because of 24, seven cable, and lots of other things and talk radio. It's just become a real mess, in terms of the definition of journalism is, is my feeling on that. But I yeah, and I'm with you. I mean, when I was in college, we took communications law, we took lots and lots of classes on this. And I had some incredible news directors during my career. So I was a radio reporter. In college, I say I was the world's worst radio reporter. And I really was terrible, because they hired me, but didn't tell me how to do anything. So I drove around Central New York looking for stories. I mean, I was terrible. But I made it and I learned a lot. Then I spent 10 years in TV news and local TV news in upstate New York, and in Charlotte, North Carolina, where I am now. And then I spent 10 years doing news. And this was a really interesting job. I did a morning news show for a conservative talk radio station. So there was a firewall, you know, between the the news department and the talk part of the radio station. But as I said earlier, you know, I don't think a lot of people make those distinctions as they listen. And so it was a very interesting place to be. Let's put it that way. And then of course, for the last five years, I've done the podcast, which I've really tried to instill with those, you know, journalism, ethics and disclosures and all that stuff. So that's our background, which is why I thought this is a perfect topic for ask the D moms. I don't know where this discussion is going to go. I'm excited to hear what you have to say Moira, I'm so excited to see or, you know, find out what listeners think. So let's jump in. This was a question. I'm not going to read this person's name because I pulled it out of a Facebook group. But I think it's a fabulous question. This person says, My 12 year old was diagnosed last week, we are absolutely new to the world of T1D and my brain is seriously about to explode. I have no idea who to trust for information. Who do you trust? Any tips on how to navigate the flood of information out there? I've only been at this a few days. It seems like everything's a contradiction. Go low carb, don't go low carb. read this book. No, don't read this article. Read this instead. And she goes on and on about all of the contradictions in the community and I'll get to more of them. You know, CGM changed our lives CGM is too much hassle. Technology is great technology is terrible, he can do anything he is about to die. I mean, she really lays it out. All the things that you and I have kind of talked about for years. So I want to tackle this in a couple of ways. I want to tackle this in terms of reporting in the diabetes community and studies. And I want to tackle what people just say, right community advice. So let's start with the information. And I I'm glad you brought up Healthline, because you may know more about when this started. But Healthline has this really fantastic thing that where they put on the article, not just the author of the article, the journalists behind it, but they see fact Unknown Speaker 13:38 checked by? Stacey Simms 13:40 Yeah, so somebody goes through all your stories, Moira McCarthy 13:43 right, and and what people probably don't know is that that has been the case, every single place, I've worked for the 40 years that I've been a journalist and help one, I'm guessing, I probably should ask my boss for this, I'm guessing made the decision to highlight the fact checkers, for the readers peace of mind so that you can see there's a fact checker there. And then second, because they're becoming more and more important in this weird time and how journalism is evolving into, as you said, a little bit of a confusing thing. So I think that's why they put it right out there. But I have always worked for quality publications, and every single thing I've ever written has always been edited, in fact checked. And I think that that's an important distinction for people to understand. And I can talk a little bit about how you can figure that out. Because one of the things you know, as a journalist and you'll agree with me, Stacey is everything ever written needs at least a second pair of eyes on it before it's published at least a second pair of eyes No matter how good you are as a journalist, you get fact checked and looked over by someone before it runs if you're Woodward and Bernstein you do and if you're me, you do now I think the blur comes a little bit in that blogs and ziens and other online things that may just be done by one person look the same on the internet, as the New York Times does or as the Hoboken journal does, whatever it is that you read, do you know what I'm saying? Yeah, yeah, it's a great point. It's a grand. So I'm not saying that people who write those kind of things aren't smart and and don't know, but that's actually not a full journalism, experience, for lack of a better word. And what I usually say to people is, when you're reading things, first of all, figure out what the sources you know, if if the name of the quote unquote publication, when you look at it online is like, I am smarter than you.com. It's probably not a really great source. But if you start to read something, and you feel like you'd like their boys, then that's a reason to read it. But understand that you're not dealing with full on journalism set up in the classic way back. Does that make sense? Stacey Simms 16:19 Right back to my discussion with Moira. But first Diabetes Connections is brought to you by Gvoke Hypo Pen. almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypo Pen comes in.Gvoke is the first auto injector to treat very low blood sugar Gvoke Hypo Pen is pre mixed and ready to go with no visible needle. That means it's easy to use how easy you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. Now back to Moira and me interesting timing. Following this endorsement, we move to talking about disclosures and commercials. But she left off asking me for last point about looking for clues in something as simple as a blog name made sense. I think it does. I think it's great advice. It's also helpful when you're reading a blog or you're reading a personal new non-medical testimonial, something like that, that you also ask yourself the question. Are there disclosures on this website? In other words, if this is a blogger or a podcaster, you who are they sponsored by? And are they disclosing those sponsors? In other words, who is paying them? Just because this is a good example of this show, we take sponsorship and I talk about this all the time, whenever we have somebody on the show who is one of the sponsors, I disclose it again, and I talk about how Look, they're not paying for the content, they don't tell me what to ask, they're paying for the commercial, that sort of thing. But you know, as you listen to that that is happening. And so if you're on a blog, or you're on a podcast, and they're not disclosing who the sponsors are, that's a red flag, it's also really important in our community to kind of know what the person is using device wise. Because while that doesn't mean doesn't make them biased, it doesn't make them their information incorrect or wrong. It does influence how we live with type one, we all have our little fandoms. And I think it's really important to acknowledge that. So if you're hearing or reading some information, it's okay to question Moira...
/episode/index/show/diabetesconnections/id/16448105
info_outline
Get Insulin.org: A New "One Stop Clearing House" For Insulin Access
10/15/2020
Get Insulin.org: A New "One Stop Clearing House" For Insulin Access
There's a new way to connect people with diabetes who take insulin with assistance programs. It's a new website from Beyond Type 1 and, of course, it's not without controversy. launched earlier this month, so we asked Thom Scher, the CEO of Beyond Type 1 to come on the podcast. Thom explains what the website is all about, why they started it and how it works. He also answers our questions about why Beyond Type 1 accepts money from insulin makers, what that means for this program and why they teamed up with groups like the NAACP to get the word out. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo Pen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 Welcome to a bonus episode of Diabetes Connections, I want to take some time and put this episode out quickly to talk about the new program from Beyond Type 1, get insulin.org if you are new to the show, I'm really glad you found us usually put the episodes out on a weekly basis. But sometimes we throw bonus episodes in here and there. My son was diagnosed with Type One Diabetes right before he turned to almost 14 years ago. My husband lives with type two diabetes, I don't have diabetes, but I have a background in broadcasting and local radio and television news. And that is how you get the podcast. And that's why this show has a little bit more of a newsy feel and newsy type feel than some of the other really wonderful diabetes podcasts that are out there. Now earlier this month Beyond Type 1 launched a new program it is hosted at the website get insulin.org. They say this connects people with diabetes who take insulin to assistance programs and low cost solutions that match their unique situation. I was interested to learn more. And so I asked the CEO of Beyond Type 1 Thom Scher to come on. Now get insulin.org is kind of a clearing house. I will link up to it. Of course in the show notes. The information has been out there for a while these are coupons and assistance programs from the major insulin manufacturers, the only insulin manufacturers geared for people in the United States. As you well know, it's a complex situation, there really is no easy way to find out exactly what you qualify for, you know where to start. And that's what this aims to do a lot of strong feelings online. And in real life when this program was announced, many people upset that Beyond Type 1 does take money from the insulin makers, and that they have taken money and are putting the logos of the insulin makers on this website as well. Of course, I talked to Thom all about that. If you are looking for this information, and you want the coupons you'd like to go through and see I can tell you before this interview begins, it really is a comprehensive website to help you find what you are eligible for. So go ahead if you're looking go to get insulin org and check it out yourself. I also need to mention the sound is just a little bit off on this interview on Thom's and it sounds a little bit metallic. And long story short, that is my fault. My technical error, but it shouldn't keep you from understanding anything. It just might be a little bit distracting at first, and I apologize for that. Here is my interview with the CEO of Beyond Type 1. Thom Scher. Thom, thank you so much for joining me. I appreciate you making time to talk about this. Thom Scher 2:54 I am thrilled to be on Stacey, anytime I get to be on your podcast. It's a good day. Oh, thank you. Stacey Simms 3:00 When we last talked, and I believe that was around the time of the partnership with jdrf. When that was announced, you're already talking then about trying to do something about insulin access. So tell me a little bit about what get insulin org is all about? Thom Scher 3:16 Yeah, get insulin.org was probably born right around that time. Actually, it was it was over a year ago that we started talking about it. And really what we set out to do was build a one stop tool that could get people to the right resources for them available today. And that's not only urgent resources, in terms of emergency need less than seven day kind of need. But it really allowed people to get cusThom action plans that were based on their individual circumstances. So things like income, prescription location, insurance type. And rather than get them a list of what is the frankly messy, messy web of a lot of different options, they get the options that are actually specific to their circumstances. And we set out to build that and have it be a relatively easy to use and friendly tool for people that are in that situation, which we know is frankly far too many people. Stacey Simms 4:11 So how does it work? I mean, I'm it's easy to see you can get on it and click around but I'm curious to hear your words. How do you explain it? What will people find? Thom Scher 4:18 At its core, what we ask of you is a very small subset of information out of the gate, I believe it asks you for zip code, it asks you for what specific insulin you're on both brand and depending maybe the product itself and or vial, etc. And then asks you what insurance type you're on. And at that point, the system starts to essentially tree out. So if you're on commercial insurance, and for example, on certain products from certain manufacturers, we're good. We'd have all the information we needed that point to tell you, for example, a copay card could be eligible for you based on what you've told us. If you say you're on Medicare, we're probably going to need additional income elements we may need to know if you're on no interest. Whether you were laid off as a result of COVID, those kind of questions come up in the flow as we work to essentially filter out the things that aren't relevant to you. So what you get at the end is just the specific programs that are relevant to you, I want to be clear, we're not acting as an actual Assistance Program, what we're doing is essentially eliminating the guesswork that's gone in for far too many people in this at that point, in time of not knowing which programs they should be going to in the first place. This project was born out of stories about just that, where we hear, frankly, these harrowing stories of people taking a day off of work, going into a clinic being told there might be a program available to them filling out an application having extension only to then be rejected, not knowing that it's because they'd applied to the wrong manufacturer or the wrong program within a manufacturer not knowing that they were actually being Medicaid eligible, those kinds of problems, and they kept happening. And for me, that's an awareness and routing issue. And I want to sort of double down this is far from systemic reform here that we're talking about. But what it's doing is offering a tool to those patients, and frankly, the providers that are helping them ensure that they're getting to the right place out of the gate. Stacey Simms 6:20 So it's like a clearing house. You know, we've seen those piecemeal posts here and there Lilly has this, you know, novo has this you can apply if you've lost your job. This is a place where you go and put a little bit of information in and narrow it down through all of the assistance programs. Thom Scher 6:36 Yes, so it includes programs from Lily violin, Novo Nordisk, and Santa Fe, as well as various government assistance options, in particular your state Medicaid programs, as well as Medicare information and chip information depending on state. And all of that is essentially aggregated. It also includes patient assistance programs and commercial programs. So that includes things ranging from copay cards on the commercial side, for example, or cash programs, and also the actual patient assistance programs. And that's important, because it's another area where patients have friction point. Because, as we all know, if you call the lily solution seller, they can't help you with your Novo Nordisk product. At the same time, if you apply to the Lilly cares patient Assistance Program, you may not be getting information about what you couldn't be getting from the commercial side, there are all sorts of bright lines that, frankly, are set up for regulatory reasons. And that's fine. But by injecting a nonprofit in between, we were able to create a one stop clearing house as you put it, and that's a really good way of thinking about it. Stacey Simms 7:42 What happens to the information that I put in to be on type one, Thom Scher 7:45 if you vanishes, it vanishes, it vanishes. Stacey, it's a great question. It's plastered all over the site, because we get it a lot. Everything you're inputting is done browser side, nothing ever communicates to our server with the exception being at the end if you decide to email the substance of it to yourself. And at that point, we use it for very strict purposes. And that is to send it to you and then purge it off of our servers as well. So we're only looking at the data in aggregate traffic location of that traffic, and then generation of action plans. So the number of people that are actually getting to an action plan itself. But outside of that we don't retain any of that information. It's actually a real point of concern, in particular, for often the people who need these programs most it's also a fear that we're just passing marketing information, for example, along to a manufacturer and we're very much not, Stacey Simms 8:37 I'm curious about how the conversations went, because I imagine there were some people in the room who were like, We need this, we got to capture this information, because that's what everybody does on the web, right? I mean, you know, when I put out my book, I was shocked when my website, people were like, Oh, you got to capture every person who buys it does this and you know, people opt in, but at the same time, it's stunning how much information you can capture, if you want to, can you give us a peek into those conversations? Thom Scher 9:01 Yeah, I think that there's always a give and take in those conversations. And for me, it stems from the goal of what we were trying to accomplish seamless, rapid information to actual people in need. And in that case, I don't need to capture that information. And in fact, I don't want to, they can slow the process down. And frankly, it adds a layer of this sort of thing is some kind of weird marketing output that was never really meant to be the entire premise at the get go was, look, there are people who don't know what options are available to them. And this is for them, at the end of the line are real people do not know which programs are available to them. And I want to add, it's unfortunate that that's the reality here. It shouldn't be on individual people to have the level of health literacy required to navigate the system. But that's the system we're in. And if we can reduce any of that burden, then that was the goal at the outset. And so I think the really honest answer to your question is I had no tolerance for those conversations. In the early days, when we started building this thing Stacey Simms 10:05 I have to ask you about the elephant in the room, which is, and we've already seen criticism online and elsewhere, that there is money changing hands here, that Beyond Type 1 is taking money from the insulin manufacturers to put this site up to drive people to the insulin manufacturers, to be very clear, what is the relationship did the insulin makers give money to have their their logos and their websites as part of this, and separately, to acknowledge that you've been on type one has taken money from these manufacturers in the past. Thom Scher 10:35 So first off, yes, we've taken money from the insulin manufacturers, it's disclosed on our funding model page. And we're clear about that. And what I maintain high degrees of transparency on it right on the top of the website, on the website, if you get there, it's on the homepage, it says it was funded by the four manufacturers, you know, this kind of a project is complex. And frankly, having that many manufacturers on a mass catalog with the partners of sorts that we do is a hard set of cats to herd anyway. But in this set of instances, what we needed was funding in order to be able to build the second or maintain the sun in order to get awareness out about the site. And the tool itself is pretty powerful on the back end. And I'd love to get into that a little bit more. But in terms of what it can do moving forward, because there's a lot more that I think we're going to be able to do with it. The other thing, though, is that we frankly, needed a working relationship with the manufacturers, in order to understand the nature of some of these programs really get a look under the hood at all of the edge cases, all of the one off instances in one off states where there have been for example, copay caps passed or various laws have changed the eligibility of programs understand the dates when those programs reset annually understand changes in eligibility to them and build a working relationship that will allow us to also maintain that accuracy on the site itself, so that we're directing people to the right places, you know, this information, one of the critiques has been it was publicly available. And there were a number of organizations that had big lists, we were one of them Beyond Type 1.org. Slash get dash insulin for the last couple of years has aggregated this kind of information. But what it hasn't done is have the degree of eligibility copywriting that you've described as Clearinghouse, rightfully so that this tool does, we're really able to get in there and say, Hey, based on what you've told us, we believe you're eligible for this program, you're gonna have to go to the program to confirm that. But that is so much more effective, having been able to actually work with the manufacturers themselves, and have that working relationship to not only ensure accuracy at launch, the accuracy and awareness of the tool moving forward. Stacey Simms 12:44 I think there are some people in the community though, who would say we shouldn't be working with the insulin manufacturers, we should only be fighting with the insulin manufacturers, because the prices are so outrageous. And the situation is so dire. Obviously you disagree with that. Can you address that? Yeah, I think it's right, Thom Scher 13:03 for patient advocates to question the relationships held by patient advocates, you're so friendly advocates anywhere, I don't think that's a bad thing at all. And I respect whose view is that you shouldn't be working with insulin manufacturers in the diabetes space. I do disagree. I think that it's important for us to have a working relationship, not only to be able to fund critical projects that can have a meaningful difference in people's lives. But in addition to that, to have a working relationship and a seat at the table to help drive change for work. You know, I think that some of this critique comes down to if we're working with them when we critique that, you know, I mean, at launch of this, we also published an open letter of sorts from me where I'm very direct that I believe it's unacceptable to see less prices having rose in the way they have, I'm very direct, but I think it's unacceptable to see rationing where it is, it's unacceptable to have the rebate system how it is. But none of that, for me, Trump's, what is the importance of getting this out to the people who need it and having the support to be able to do that. And I'll add on this, Stacey, you don't watch something like this in this day and age with insulin manufacturers about insulin and not know that that critique is coming. We of course knew that critique was coming. We launched this in spite of that knowledge, because we believe that downstream are actual people who need the tool. And that came out over and over again, over the course of building it has come out over and over again, Since launching it in no way means we're giving up on the upstream fight. And in fact that upstream fight is a much harder, much longer road. And it's a road that we absolutely believe in. We believe it definitely needs to happen. But it's not as simple as asking for list price to simply be lowered. In fact, there's quite a robust set of evidence out to the contrary of that. So I respect that view. But I disagree with that. Stacey Simms 14:57 I'm curious, we're talking really days after this as long Have you heard from people that it's helped? Thom Scher 15:02 Yeah, I have a member of my team said to me when we launched, and it's some of the most sage advice that was given about this, that launch day was going to be about hotcakes, we were going to see hotcakes from people that were critical of it, we were going to see hotcakes from people that really thought it was impactful, we were going to see patients stories about these programs working or not working for them, we were going to see industry leaders and sort of key thought leaders having strong opinions about one way or another. And then at the end of the day, none of that really mattered compared to the stories that we hoped would emerge about people actually using it. And we're starting to get some of those stories. And I, I was just reading one of my inbox from a partner at an org who sent us that they had walked somebody through it over the phone. And that they they'd gotten a phone call asking for help, and that they take them to the site and walk them through it, that it worked for them. We also had a conversation with them. We're doing some work with Dr. Dan Peters, on our leadership council. And she just had glowing things to say about its use case in clinic. And we saw a lot of that kind of commentary that this is going to be a really powerful tool for providers to be there. And so yes, I think you know, Far too often in the diabetes space, I think we get lost in some of the the higher level talking points about why and how we're operating and whatnot, when all the way downstream or just people trying to frankly, manage their diabetes, live the best lives that they can and get through the day sometimes. And that's a huge volume of people. And I think this tool more than anything is for them not for the hotcakes by myself or you or Twitter or industry kind of none of that matters to me by comparison to whether or not people are actually using it. And Stacey Simms 16:42 curious to it also says in partnership with some groups that I'm familiar with. But I haven't seen in conjunction with diabetes issues before Feeding America, the n double A CP, the National Hispanic Medical Association, tell me a little bit about reaching out to those groups and why it was important that they get on board with something like this, Thom Scher 16:58 it's critical to me, it spoke to what we were trying to do. I remember the Feeding America conversation really clearly the first one that we had with them, and they're phenomenal partners. And we're going to one of the things I'm really excited about with the tool is that we're going to add some food security information in terms of how to find local food banks that's based on some of the information that we're getting that's coming...
/episode/index/show/diabetesconnections/id/16408664
info_outline
"Being Strong is Wonderful"- World Record Holder Linda Franklin on Fitness & T1D
10/13/2020
"Being Strong is Wonderful"- World Record Holder Linda Franklin on Fitness & T1D
Linda Franklin is one of the strongest people we know - and we mean that literally! She holds world records for power lifting and has ranked at an elite national level for cross fit. Linda was diagnosed with type 1 at age 26 and reveals she struggled with management until she found her community. You may know Linda from the amazing Facebook group, In Tell Me Something Good, the dedication of a dad. Innovations this week has an update This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke hypo pen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, Linda Franklin is a world record holder for powerlifting diagnosed with type one at age 26. She's in her early 60s and at an elite level, but she says she really struggled with management until she finally met somebody else with T1D, who shared her passions. Linda Franklin 0:46 And I was trying to do CrossFit and coping with the crazy blood sugars. And I was really having a difficult time when I met him. It was really an eye opener for him and meat. We were just so excited to talk to each other about things, Stacey Simms 1:00 Linda and that friend Daniel went on to create a now well respected and very large Facebook group for athletes with diabetes. We'll hear more of Linda's story and get some great advice about fitness and type one in tell me something good. The dedication of a dad and in Innovations an update on the longest wear CGM yet this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm your host, Stacey Simms, and I'm really glad to have you along. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I don't know about you, I am on the edge. What a stressful time. I mean, this year has already been bonkers. I find myself, as they say, Doom-scrolling through Twitter, I was already on my phone way too much before this year. And it's just multiplied to the nth degree. Now, don't worry, I'm not going to talk politics here. This is not the place for that you do not come here. I am sure to talk politics. And if we were going to have a show about that, because let's face it, sometimes there are issues you would know before you heard me start talking. This is not that. But I do think it's important to acknowledge that politics is exhausting us. Everything is exhausting us right now. And I thought it would just take a minute to share with something that is really helping me. And maybe you have your own version of this. Maybe I'll put this in the Facebook group when this episode comes out. And it's Diabetes Connections of the group. I really hope you can join us on Facebook. It's such a great group of super smart, wonderful people. But what's helping me is another podcast. It is pop culture, happy hour. It's an NPR podcast. It's been going on for years and years. I think they just celebrated their 10 year anniversary. And they just talk about pop culture for 20 or 30 minutes. It's fun, it's distracting. And what I have been doing lately because I just found this podcast this year. So there's a huge back catalogue to me. I'm going back and listening to podcasts from 2016 2018. You know, I'm listening to them talk about movies, and TV shows and things that were popular in the news a long time ago. And you know what? It's a great distraction, and it gives my brain a break. So I know you come here for diabetes news and not necessarily weird podcast recommendations. But man that is really helping me right now. Along with walking my dog. Maybe I should give a little nod to fitness since that was what we're talking about. Actually this episode. You know, I live in the Carolinas. I live in Charlotte, North Carolina. We're so lucky. We live near a Greenway and the weather is generally pretty nice. So I have been able to walk my dog almost every single day. She's actually right here under the table as I tape. She's usually pretty quiet and when she's not, We edit that out. But my dog's name is Freckles. She's not very friendly. She likes us but she hasn't met anybody else that she likes yet. Except maybe my dad. He does like when grandpa comes to visit because he also walks her every single day. But man, she's an interesting character. Anyway, we will get to Linda Franklin. That's why you're here. Linda Franklin, who is an amazing, amazing story, not just for her dedication to fitness and her passion for it her world records in powerlifting but her diagnosis story and what she found inspiring early on, and a teenage Bret Michaels how he makes an appearance. So we got a lot to talk about. But first diabetes Connections is brought to you by One Drop. Getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strip plans. Plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop lips with type one they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more, go to Diabetes connections.com and click on the One Drop logo. Like many of you, when I have question about sports and diabetes, mostly about my son, I head over to the type one diabetic athletes group. It is one of the biggest Facebook groups there is. But it's also largely drama free and full of support. My guest this week is a big reason why she didn't start the group. You'll hear more about that in our interview. But she is an inspiring and I think larger than life personality, who challenges us each week with flex Friday and other fun posts. Linda Franklin is a world record holder in powerlifting. And before that, she placed 14th Worldwide in the 2014 CrossFit open this interview was conducted live in that Facebook group, you can watch it there it's recorded and then playback in the group. Or you can see it on our YouTube channel Diabetes Connections over on YouTube, I will link all of that up in the episode homepage as usual, at Diabetes connections.com It was great to talk to Linda here is our interview. We don't normally take like this and who the heck knows how it's gonna go. But she's been such a great sport. And I'm so excited to welcome my guest someone a lot of you know quite a bit about but some of you may not and boy but a story. Linda Franklin, thank you very much for letting me in the group and agreeing to do this and fingers crossed, it all works out. Linda Franklin 6:22 Yeah, it will. Stacey Simms 6:23 Let's jump right in. Because this is a group for and about athletes. And I joined this group because of my son, who was a type one. And he's played a billion different sports. Most recently, he's more interested in wrestling. But I'm just so impressed with the amount of knowledge in this group. Do you mind just sharing how the group itself came to be? Sure. Linda Franklin 6:46 So Daniel Borba, who has been a lot a little inactive lately, because he's expecting his second child, which is super exciting. But I met him back in 2013, my brother said called me and said, hey, there's a type one diabetic in my gym, my brother on the CrossFit box. And we were both so excited because he knew I didn't know anybody. And so I met Daniel, we did a little tiny podcast that just disappeared, you know, was wasn't much of anything, but it was so great to get to know him. And he'd been thinking about exercising and not there just wasn't much knowledge out there for how to control blood sugars, exercise, being type one, taking insulin, it's very complicated. So he just got decided to start this group and invited me and here we are. This was seven years ago from June, and it's blown up. Well, unfortunately. Stacey Simms 7:44 Yeah. Well, I mean, there's good and bad, right? Linda Franklin 7:47 Yes, yes. Well, let's Stacey Simms 7:48 talk about the good and a little bit. I mean, we're gonna talk about your story and all of your incredible accomplishments. But I'm really curious seven years ago, and that's about when I started my local Facebook group to the diabetes community was interested in in kind of different things. The technology has changed. Now the knowledge has changed. Do you remember the first kind of questions people had I imagined it was just how do I work out without crashing? Linda Franklin 8:11 It was very small. We were like 300. To begin with, I would say for the first year, three to 500 people. So it got to be very intimate. And as the group grows, larger, questions become more voluminous. And you can start categorizing everything. But at first it was Yes, that was a big, big problem, or spike, what a really big problem was because it was really based around CrossFit to begin with was the spike after exercise. That was a huge, huge problem. And for me, too, because I was doing CrossFit at the time. And it was a that crashing and spiking after exercise was a big, big issue in the group, how to eat before you get started and when and how much and how much protein and I could go on? Stacey Simms 8:57 Well, I'm gonna ask you to so I made a note of that, because I think it would be great to get some of your advice a little bit later on. But you said CrossFit, now I'm looking at your bio, and I don't even know where to start your soccer CrossFit world record holder now powerlifting let's go all the way back before you were diagnosed in your 20s What's your sport in high school? Like Were you always athletic? Linda Franklin 9:24 I was a cheerleader. Okay, this was the 70s, early 70s back in what was cheerleading, Stacey Simms 9:30 the sport that it is now because the leader in high school in the 80s and it was not an athletic sport. Linda Franklin 9:36 No, it wasn't then, but I grew up with a bunch of boys and I climbed trees. I've always been a tomboy. And when I did sports in school and high school classes, I set the standing broad jump record in high school and you know, just stuff like that. I kind of excelled at every sport that I did. Except for basketball. I can't run in triple vault. So that was like, but I think my whole family's pretty athletic. Stacey Simms 10:04 So when you were diagnosed, first of all, what was the process? Were you given an answer immediately or at age 26? Linda Franklin 10:12 Was it? We don't know what it was strange. Like I've told someone before, or many people that women, it's typical when you have a lot of high blood sugars for a long time, or even a short period, yeast infections are a really big problem. And it was for me, and I was actually in the midst of bodybuilding, starting lifting weights. And this is what introduced me to weights which I found a real love for. And I started just eating a lot drinking a lot up on my ping and the yeast infections got super bad. I look like I walked like I'd been riding horse for. So I went to the doctor, gynecologist beat into a company says you need to go to the lab, like today. So I went the next day because I'm 26 living by myself and my back. Yeah, whatever. Okay, right. Yeah. And I drink in syrup all day at the lab. And by the time I was done, I was like, almost 800. So they said, we'll come back in a few days. And you're going to go see your doctor on Monday. And you know, but they let me go home. And it was really casual. I mean, they knew, obviously, I was diabetic, but they didn't put me in the hospital right away like they would normally now. And that's pretty much how it all got started. Stacey Simms 12:07 Did you immediately think? Did someone tell you you can go right back to the gym? Or were you told don't work out? Do you remember anything different? Linda Franklin 10:12 No, I just remember sitting in the doctor's office with a diagnosis on Monday morning. And he just literally went into a fog. He just said you know you're gonna, this is gonna cut your life short. And just all the old 70s routine. And he wasn't trained. I mean, it was an internist, or whatever you call them and wasn't really trained in depth about diabetes, treated mostly type two. So he did tell me not to do activity. But I didn't go back to bodybuilding because I wasn't feeling good. Stacey Simms 12:07 What led you back to your activities at all, though? Because you didn't ultimately wind up not exercising? Linda Franklin 12:14 Yeah, absolutely. So what happened though, is I got really active only to control my blood sugar. I refused insulin, I freaked out. Well, I didn't have parents looking over me gone for doing this. I didn't have Stacey Simms 12:28 an endocrinologist either. As you said, You know, I didn't. It was Linda Franklin 12:31 just pretty, pretty basic. And I just decided, Okay, well, after I eat, I'm just gonna I gotta jump rope. I jumped rope, or walked or ran after every meal for about three months, until I was down to eating out of a jar peanut butter and decided, I think I need insulin. I just couldn't do it anymore. But that's I just, it was ingrained in me to exercise anyway, before that. So I decided, Okay, I kind of laid off for a little bit. And then I got back into snow skiing and doing normal things. But I wasn't in great control or anything. But I still did stuff. Stacey Simms 13:10 Yeah. I mean, you couldn't have felt that great. But you also don't want to sit home and not Linda Franklin 13:13 feel great. No, I'm not wanting to sit behind and watch everybody do stuff when I know. So when did things start to get better? Actually, I would say right before my first pregnancy, I knew that I needed to get my ducks in a row before this happened. That was when I was 33. And I went to the sweet Success Program. But they were both my pregnancies were planned. And I decided I got my a one c under six and got pregnant, had my first baby. And then two years later, did the same thing. And then after that it got a little bit crazy again, you know, with kids and was hard to keep in control. But that's when I realized I need to do better. I didn't have a blood sugar meter, the first two years, I cut my strips into quarters to save money because the meters then would take cut strips, they won't know. So I did that. And I did all these things to save money. But I did a lot of injections to I was stacking insulin a lot up and down, up and down get really low get really high. And it was I was a mess. Before we move on, Stacey Simms 14:21 you mentioned something called Sweet success. Is that a local program to you is that a hospital program actually Linda Franklin 14:27 was a nationwide program, I believe for women type ones that get pregnant and they just start this program suitesuccess. I don't know if it's California based or if it is nationwide. I'm not really sure but it is I do know here in California and it was wonderful. He said he was at a more it was at a UC hospital. I was there every two weeks but they both went fairly well. Stacey Simms 14:54 It's such a different time I think it's hard to understand is Unknown Speaker 14:57 that Unknown Speaker 14:58 not only the insulins were different But as you said the blood sugar meters were new in the mid 80s. It's not like it is now at all. Stacey Simms 15:11 Right back to Linda answering that question and taking a look back. But first Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom G6 since it came out more than two years ago. And it's amazing. The Dexcom G6 is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warmup, and the number just pops up. I mean, do you remember back before where you had to wait in a two hour warmup, and then you calibrate then it would start populating? It's just a great advancement. We've been using a Dexcom for seven years in December, and it just keeps getting better. The G6 has longer sensor were now 10 days, and the new sensor applicator is so easy to use. Benny does this all by himself. Now. We love the alerts and alarms, and that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Now back to Linda. And she's talking about what technology was like when she was first diagnosed. Linda Franklin 16:20 No, there were no cgms there were no cell phones. I mean. So it was Harry Caray. You know, I especially being diagnosed in my mid 20s. I know some people that were diagnosis, children, their parents kind of monitored them and got them through high school into adulthood with a lot of success, but also got them real regimented. Whereas me, I'm 26 I've already got my routine and this gets in the way. And here I am gone. Uh, well, I'm just going to make do till whenever until you know more good stuff comes along. And I I suck at technology. But I sure do love it. I'm telling you. Stacey Simms 17:00 Well, unless I'm laughing technology, I can't even get my your phone good wired things to behave. And you know when my lighting is insane, so we're in good company, sister. Don't worry about that. But let's talk about you said you started to turn things around a couple years after your second child was born. I'm curious, like, Did you meet somebody? Did you just say to yourself, Linda, I'm not feeling great. I want to do more. I got the CrossFit stuff going like Linda Franklin 17:21 I'm actually no, I never did know anybody until the dots started. So I didn't really know anybody that was type one, until I was probably well, until I met Daniel Borba the founder of the group. That's why my brother called me said I met a type one because I really didn't know anybody than other. I worked in endocrinology office, and there was another girl there that was, but it wasn't the same as meeting and talking about Stacey Simms 17:49 was it until you met him that you've got things. I don't see more under control. But you're such a success story. Um, Linda Franklin 17:57 it did help because it, it made me pay attention to it more, I was kind of brushing it under the rug for a lot of years, like, Okay, I'm just gonna just shoot myself through my chains and just keep doing what I'm doing. And he put it in my face. And I was trying to do CrossFit and coping with the crazy blood sugars. And I was really having a difficult time. So when I met him, it was really an eye opener for him and me to talk about, we were just so excited to talk to each other about things. But before that, my whole connection with type one, and any type of anybody...
/episode/index/show/diabetesconnections/id/16366391
info_outline
"Innovation All Stacked Up, Ready to Go" - Medtronic Diabetes Group President Sean Salmon
10/06/2020
"Innovation All Stacked Up, Ready to Go" - Medtronic Diabetes Group President Sean Salmon
It's been a busy fall already for Medtronic; they've acquired Companion Medical and the FDA approved their 770G pump. Stacey catches up with Diabetes Group President Sean Salmon to talk about that and much more. Find out the difference between the 770G and the upcoming 780G, their plans for longer-wear pump insets and when they might have a no-calibration sensor. In Innovations this week, a new study showing the benefits of once a week basal insulin. It's called This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke hypopen, the first remixed autoinjector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, catching up with Medtronic, we're talking about the newly approved 770 G, looking ahead to the 780 G, their acquisition of In Pen and how they think they've cracked the code on longer where pump in sets, Sean Salmon 0:42 the things that are in insulin to keep it from going bad. The preservatives, if you will, are behind a lot of that sort of site actions that you get. So we're able to take that stuff out and have just filtered Insulet. a queue will deliver to the site. That's really the magic behind getting the extension of use. Stacey Simms 1:00 That's Sean Salmon. He heads up Medtronic diabetes group. In innovations this week, a once a week basal insulin, how would that even work? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you if you are new welcome. Glad you found us We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed right before he turned to back in 2006. And we have his high school sophomore 504 meeting this week. Yeah, it's virtual. His whole school is virtual. I've shared on the show before he is part of a very large school district in the Charlotte, North Carolina area. And the whole district has been virtual. younger kids are starting to go back to school in October. They're staggering it right now High School won't go back in person until January at least that's the plan. So I'm really interested to see how they handle this 504 meeting. He's had one, you know, we've been diagnosed since he was two. So he's always had one. In our district. We have a separate DMMP a diabetes medical management plan that covers a lot of the basics that are maybe in your your child's 504, but I assume this will focus on testing. I don't know. I mean, he's home. So you know, he can go to the bathroom when he wants he can drink water when he wants. I'll share more about that though. Mostly, I think this is about keeping our place in the 504 for things like the ACT and the PSAT and all that testing and he is so thrilled, but it's going to be coming up. Another thing I want to tell you about real quick is Hey, in September, we saw a big boost of sales of the audio book of the world's worst diabetes Mom, you know, this is my book, it's part memoir, part advice, stories, real life stories about raising a child with type 1 diabetes. And the audible version has been very popular. And I'm telling you September, I don't know maybe end of summer and everyone decided to get an audiobook, but audible loves when that happens. And now I have two free copies to give away, you do not need to have an audible account, you don't even need to really start one here, you're not going to be signing up for something you can't get out of you do need an Amazon account. So if you want the copy, I'm not doing a fancy contest on social media, I probably should. But all you have to do email me Stacey at Diabetes connections.com put audio book in the subject line and I will give you the first two people who do so a free book will make it very simple there. If you're interested in perhaps the paperback or the ebook, you can head on over to Diabetes connections.com or it's on Amazon, whatever is easiest for you. One more thing and it's an apology. Last week I apparently mixed up when I was talking about Medtronic 770 and 780 G. We do clarify that in the interview here with Sean Salmon. But to be clear, the 770 g was recently approved in the US. It is basically the same as the 670 g except for the addition of Bluetooth connectivity for data sharing and remote monitoring. And as you will hear, you'll be able to update the 770 G and future Medtronic pumps at home just like your phone. Alright, Sean Salmon. With that and a bunch more we go down a laundry list, but first diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop, I was really impressed at how much they get diabetes. And it makes sense when you think about it. Their CEO, Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes, and the people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies deliver no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo. My guest this week is Medtronic Executive Vice President and President for the diabetes group, Sean Salmon. And we spoke just as the deal for Medtronic to buy companion medical makers of the In Pen was closing. So that is a done deal. Now, In Pen is a smart insulin pen, you're probably familiar with it, it keeps track of dosing and recommended dosing, sort of like what you'd get with an insulin pump, you still have to inject, but the dosing can be automatic, the app will tell you exactly what to do. And keep track just like an insulin pump does as well. We talk about that. And a lot more here. Here's my talk with Sean Salmon. Sean, thank you so much for joining me. There's a lot going on at Medtronic these days, I appreciate you spending some time with me and my listeners. Sean Salmon 5:44 That's my pleasure. I appreciate the opportunity. Thanks, Stacey. Stacey Simms 5:46 We're gonna go down pretty much a laundry list of technology and questions from listeners and things that they want to know. But let me start slow. And just ask you, how are you feeling about everything these days, we've got delays because of COVID. We've got, you know, a year like no other it's a cliche at this point. But you know, in your own words, how are things these days at Medtronic, and in terms of, you know, what you're looking at going forward? Sean Salmon 6:09 Well, it's interesting, right? I think we're all living through some unprecedented times, just everywhere in the world right now. And it's certainly challenging. But at the same time across Medtronic, you know, I think we've got such a rich pipeline, and just about every single business, it's, it's exciting to see what you know, what the future is gonna bring, we get past some of these near term challenges. I've been here for 17 years, I can't remember a time where we had so much innovation all stacked up, ready to go Stacey Simms 6:34 Well, let's jump in and talk about it. One of the first things I want to ask you about is the acquisition of companion medical. And this is the startup they've got the in pen. This is the I think my listeners are very familiar with it. And we've done episodes on it. So tell me a little bit about what the plan is, for companions in pen product with Medtronic, what are you gonna do with it? Sean Salmon 6:59 Yeah, sure. Well, maybe I'll start out with, you know, why did we decide this was a good idea? And yes, I came into this role. Yeah, you whenever you start a new job, it's been about a year from now, the first thing you do is you formulate a strategy of how are you going to serve your patients in the market? And it's really, you know, strategy is really a question of, what are you providing for who, when you start asking those questions, it really narrows down what your focus should be in, and didn't take that long to sort of Peel apart? What is it that are people living with diabetes are seeking and how are they? How are they being treated today. And if you look around the world, it depends on the country you're in. But multiple daily injections is the most frequently chosen therapy, it's something that ranges between 60 and 90% of the treatments that are out there. So you know, really the philosophy app is that for us to know, what are provided for whom we need to know, you know, where do people where are they on their journey? And where do they want to go. So, you know, injection in and of itself is a fine therapy. But there's just really variable outcomes that patients are being able to get from that. And a lot actually about just the, it's made difficult by the fact that you really don't always know how vigilant you are, how much insulin you've taken, how much you have on board. And it's very hard to keep track of all that. And what companion has done with the implant system, of course, is to track that insulin, so you know exactly how much is given at the right amount of time and have some estimation for carbohydrates, the ability to load that up. And then of course, the CGM data is there. So when you have those components, a lot of that difficult math calculation about how much insulin Do I need to take at a given time is made simpler. And we can extend that by adding a lot of what we have within our automated insulin delivery systems, algorithms, personalization of those algorithms into that experience with a pen. So if you will, we're trying to close that open loop, or at least close it down some and what we do with automated insulin delivery systems as we have this track record, right, have you just recording CGM data over time, and knowing what the influent amount is, you can really get to an understanding of how individuals kind of respond to insulin, and more personalized, the amount of dosing that happens. So get an even tighter connection to how much insulin someone needs to take at a given point of time. Of course, on meal handling, that's the place, we're really pushing a lot of our technology, we have a very large and capable group that does data science and artificial intelligence. And all that really means is that we're able to take large data sets, and then put them into actionable insights that really simplify how people can get better control without having to do anything. And one of the really interesting areas we're investing in right now is around meal handling. So we can with our technology have a really good sense of when you're going to eat. And we can confirm that some gesture control technologies that come from a wearable like a Fitbit, or an apple watch or something like that. That tell us can confirm that some is eating. So in that instance, you could, for example, remind people, there's been no bolus given that it's time to bolus. And if you miss just two boluses a week in a meal, that equates to about a half point increase on the A1C. So obviously, outcomes can be made better. But the important thing is that it's done in a sort of an invisible way or helpfully in the background way. We're not asking somebody to anymore, which I think is really the sort of driving principle behind what companion medical set out to do within pen spec, this least burdensome as possible? Well, we can add a lot of technology that isn't visible to the user, for the most part, but can really drive a better experience and better outcomes. So what we're trying to do with a closed loop we can bring to this open loops, I said, and that's really, I think how the two fit together can help it a lot of ways. Stacey Simms 10:58 A couple of questions about You just said you. You mentioned the gesture technology. That's Klue, right. You all acquired Klue this year. Sean Salmon 11:03 Yes, exactly. Stacey Simms Is that going to be part of a companion medical system? Sean Salmon Yes. So the idea is, we're going to have that for any means of insulin delivery, right. So it's the ability to detect that somebody is in the process of eating. And the absence of any kind of bolus is a great opportunity to say here, let me give you a helpful tip here and remind you to bowls, whether you're pushing a button on your pump, or you're, you're reminding yourself to bolus we can drive some improvement there. And it was evaluated in a recent study that we did. It's a small study. But we showed that we could fact drop a one suit by a fairly sizable amount just by bolus reminder. Now, ultimately, I think we can use Klue and that technology in a way that can actually automate the delivery of bolus so nobody has to do anything within a sort of closed loop system. But you know, that's, that's some more work than where, or whatever to do it. Absolutely. It's Stacey Simms 11:53 you heard me laugh, because, you know, just by bolus reminder, parents around the world have children with Type One Diabetes would argue with you that a simple bolus reminder in the form of a parent does not make that much of a difference. Yeah. But I hear you, I Sean Salmon 12:07 think it Yeah, I mean, the difference here is the bolus reminders, and just it's time to bolus what we can do. Knowing the history of how much insulin is on board. Get a quick estimation is the medium small, large amount of carbohydrates being consumed, we can tell you how much to bolus not just that you need the bolts, right? which we think is a helpful insight. Stacey Simms 12:28 When you talk about Klue. It also makes me laugh as you listen. As I talked about Klue, we did an episode with them in the past if you'd like to learn more, and Sean , I laugh because every time I talk about Klue I do the gesture of eating food. I don't you can't see me but every time I mentioned it, I think that's because that's how it was explained to me when they first demonstrated it. It's a really interesting technology. But that'll be in not just pens, you're planning on using that in pumps as well. Sean Salmon 12:53 Yeah, so you know, Klue actually runs on on a wearable. And then it talks to the algorithm that's either you know, on your phone for your pen, or can be the algorithm that's driving the automated insulin delivery system. So think of it like a sensor, and the sensor gives input so that the algorithm knows what's happening. And it lends itself to any means of insulin delivery. Stacey Simms 13:15 One of the big concerns and you know this when a large company buys or acquires a small company or product the big concern is that you know, it'll be shelved or there will be big changes to make it more proprietary. The in pen is now used with Dexcom and the ever since implantable CGM. Can you reassure people who are using it right now that you're not going to change that I assume it'll be used with a with a Medtronic sensor, but will you continue with the sensors that it is integrated with right now? All right, right back to Sean answering that question. But first diabetes Connections is brought to you by Gvoke hypo pen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke hypo pen comes in. It's the first auto injector to treat very low blood sugar Gvokek Hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Gvoke correctly. I'm so glad to have something new. Find out more go to Diabetes connections.com and click on the G voke logo. gvoke should not be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon comm slash risk. Now back to Sean , talking about Medtronic plans to continue in Pen with its current partners. Sean Salmon 14:44 Yes, we have no plans to take away anybody's sensors from them. But we're not entirely in control of that. So if if sensionics and Dexcom plan to maintain that access and then we're game we want to make sure that people have the support they need Stacey Simms 15:00 When you say you’re not in control of it, you’re talking about what Dexcom and Eversense would do, you're not talking about something on your side. Sean Salmon 15:07 No. So the way all this works is you have to have, depending on what platform of phone you're dealing with, you have to have a thing called an API, which is basically a hook of software into the algorithm. So somebody on Sony decides they don't want to have that access to the longer they can turn it off. But we're not going to turn it off. We don't have control over that. So our belief is that, you know, if we're meeting patients where they are, and they're on a Sensionics device, we should maintain that access for those patients. Of course, we want to open up access to our own CGM. So we have a lot coming in the pipeline for CGM, which is pretty exciting. But no, I understand the sentiment that when you a large company buy something that they want to shelf it This isn't like big oil buying biofuel. Right now we're, we think we're gonna bring a lot better experienced to patients by combining the best of what companion has developed an impact with what we're endeavoring to do with things like Klue and neutrino and a lot of other personalization algorithms that be used in the closed loop side. Stacey Simms 16:08 So let's talk about sensors. Let's just pivot right to that first, though, before we let this whole thing go within any timeline and integration with the guide. assume it's with the Guardian, CGM. Sean Salmon 16:17 Yes, so initially, we'll have Guardian, but there's no we have three or four, five actually different generations of sensors coming and it's going to be compatible with everything we develop going forward as well. Stacey Simms 16:30 Let's talk about Guardian Connect. This is the standalone CGM doesn't need to be paired with an insulin pump. Tell me a little bit about the reception of that, what the plan is for it. And you know, Who is it for? Sean Salmon 16:41 Yes, so I think a standalone Guardian has been sort of an on ramp to be able to use an integrated CGM with our pump. But frankly, I think the experience that we've provided with that needs a lot of improvement. That's what we're endeavoring to fix with the pipeline. And there's two parts to that one is finger sticks, you know, to, to calibrate or to confirm before dosing as required finger sticks, and that's something that we are trying to remove in the next generation. And the other one is on just the, the ease of putting it on. And it takes a lot of overtaken steps to insert, and generates a lot of trash in the process. So all of that's problematic. And we're, we're moving to an integrated platform where the sensor, and the transmitter all in one, easy to apply three step, just press it on your body kind of approach. And in the interim, reducing or eliminating the need for finger sticks. That's what the near term pipelines...
/episode/index/show/diabetesconnections/id/16267268
info_outline
Dexcom Update: Bonus Episode with CEO Kevin Sayer
10/04/2020
Dexcom Update: Bonus Episode with CEO Kevin Sayer
Dexcom's CEO Kevin Sayer checks in with Stacey to answer your questions. He talks about their new pharmacy benefit for Veterans and why Dexcom would love to move everyone off of durable medical. Plus, a follow up on their hospital program we first discussed this spring, adhesive issues with the G6 and looking ahead to the G7. Stacey also takes some time to talk about the interview process & which companies we feature on this show. There is a video of this interview - ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 Welcome to a bonus episode of Diabetes Connections. I'm so glad to have you along for this. When we talk to the technology companies, especially Dexcom, we get a whole bunch of new listeners. So if this is your first episode, welcome, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. Week after week, I talked to lots of people in the community sharing stories from athletes and celebrities and tech companies and regular people just living with diabetes. My son lives with type one. He was diagnosed almost 14 years ago when he was a toddler. And we've been doing the show for more than five years now usually release episodes on a weekly basis, we throw in some bonus episodes when the time is right. And this is one of those times Dexcom had some interesting information to share. So I jumped on zoom with the CEO with Kevin Sayer. We talked about the new pharmacy benefit for the Veterans Administration. A follow up on their hospital program we first discussed this past spring, I answered your questions about adhesive changes for the G6. And looking ahead to the G7. I'm going to come back at the end and do some inside baseball stuff about the interview process. And about which companies I feature on the show why we feature them when we talk to them? What kind of questions I asked that sort of thing. I got some good questions about that in the Facebook group that I would really like to address. So I will do that at the end. As you heard just a moment ago. Dexcom is a sponsor of the show. As longtime listeners know I say this every time we talk to a sponsor, but it's really important to get this out there. I do not allow sponsors to dictate the content. So they will not tell me what to say during an interview. They will not ask me to edit that's not part of the deal. They are a sponsor. We believe in them, they get a commercial, we like the product. It doesn't mean we don't ask questions. And we probably speak to Dexcom the most frequently. But I like to point this out every time we talk to sorry if you get tired of hearing it. But those disclosures are important. You should also know there is a video version of this interview was a zoom interview, we taped it, it's on our YouTube channel Diabetes Connections, and I shared it on social as well. Toward the end, my son Benny stops by and we make reference to some appearance issues. All you really need to know if you don't want to watch it you just want to listen here is that his hair is now dyed. It's this crazy bleached blonde, and he's wearing a giant purple Snuggie. He makes quite the impression. All right, let us get to what is important here. And here is my interview with Dexcom Kevin Sayer: Different kind of way to tape an episode of Diabetes Connections, but we're going to give it a try. And joining me is the CEO of Dexcom, Kevin Sayer. Kevin, thanks for doing this. I appreciate it. Kevin Sayer 3:01 Oh, you're welcome, Stacey, good to talk to you again. Stacey Simms 3:04 So normally this time of year, you'd be in Europe for a EASD. That conferences is happening. But virtually, Kevin Sayer 3:11 it was happening virtually. It's not quite the same. But I get notes from everybody who's listening to the presentations, gathering papers to find out what went on during the day. So are what we're trying, everybody's trying to do different things. Stacey Simms 3:25 Well, I have a laundry list as usual to go through what is Dexcom presenting anything at this conference, because there are a few Kevin Sayer 3:31 papers, supporting the strength of CGM and treating diabetes. Some of the results in the type two studies that have happened recently and some of the results and some of the studies with the senior community and things like that. Nothing earth shattering, but again, all supporting CGM and how well it works and helping people take care of their diabetes. So you know, a good show for us. Just typical. Stacey Simms 3:56 Well, we've got a lot to cover just today as our speaking and news release came out about a new agreement with University of Virginia. And this is for as you're watching or listening University of Virginia as a bit of a history with Dexcom in terms of the place where type zero was developed. So what is this agreement all about? Kevin Sayer 4:17 Well, and you're correct, yeah, we've had a relationship with the various teams in Charlottesville for quite some time, the type zero group that we actually acquired in 2018, or the algorithm for the control IQ system, and then control steady resided, we felt that was a tremendous asset going forward, not only in developing automated insulin delivery technology, but possibly for developing decision support tools. For those who don't want an automated insulin delivery system over time. In conjunction with that acquisition. You've got also always really smart people to still stay at University of Virginia and do Diabetes Research and they're very access to clinical trials, clinical networks, all the other things they've done. We've had an informal relationship with them for a long time and we discuss could you guys help us with this or that and as our companies became more mature, and they got more involved in diabetes research that we felt was important to fund the things we were asking for, and give them an opportunity to do some good work on our behalf. So over the next five years, we'll target some leading edge new diabetes research project and use those brilliant minds to work on behalf of Dexcom, and ultimately, on behalf of our patients, Stacey Simms: is there anything specific that you can tell us? Kevin Sayer: first, you know, we have current generation, automated and some delivery algorithms out there will certainly work on next generations, and ones that will just fine tune what we've already learned and, and do better. On top of that, I think you'll see us work for decision support, like I spoke about earlier, what tools can we offer somebody that is treating their diabetes and using insulin that are meaningful, and not getting in a way all the time? So what constructive? Can we do there and predict now that we have all this data from all of our patients, because the data has been uploaded from the phone, we think that analytics capabilities of the team at UVA can certainly go through this and find a lot of things that could be helpful for us to offer to our patients. And you know, as we look at even over time, they develop simulators and all sorts of things and looking at diabetes data that we think it'd be applicable for the future with respect to working in the hospital, or gestational diabetes, even the type two non insulin take taking patients. So now that we signed this agreement, it's up to us and VBA team at the type zero team to figure out and say, Okay, here's the things we want to work on. And we're we're just excited to have the agreement in place. Stacey Simms 6:39 For people who are hearing things like we have all the data from the phones for the first time you and I've talked about this before. But can you talk a little bit about Dexcoms use of data. In other words, you know, My son has used Dexcom for seven years now. So you guys know everything about him. But you don't really know about him? Well, blinded, right? Kevin Sayer 6:57 We know that they're from transmitter 1765 G, here's the glucose signals that we received. And you can look at what is going on with your son. And we actually have data regarding how it performs as well to come to the app so we can service it. And we can use that information to make our product better. But we don't share anything with anybody without a patient opting in and saying, I would like to share my data with x, or I would like to share my data with the Southern Company. There's no data sharing, there's it's absolutely kept very confidential. we comply with all HIPAA requirements and keep things very buttoned up. Stacey Simms 7:34 All right, again, like I said, there's a laundry list here. So the next thing I wanted to ask you about, and this is wonderful news for veterans that Dexcom G6 available at VA pharmacies, at no cost, it will, it's covered by the VA Kevin Sayer 7:47 covered by the VA. You know, in the past, as many of your listeners and followers know, we've been trying to move away from durable medical equipment. As far as the coverage vehicle for our product, one of the things has been one of our biggest roadblocks is getting access to this product where people can get it easily and affordably. And within their normal course of their work. Rather than filling out a bunch of paperwork and having a bunch of Doctor notes and medical records and blood glucose logs and everything. And this coverage by the VA is going to make it accessible to veterans as long as they are on intensive insulin therapy type one and type two diabetes as a Pharmacy Benefits. So they would pick it up where they would typically pick up their drugs and and no copay. So this is a wonderful improvement for a group that really is troubled with diabetes, I think there's something like four times more incidence of diabetes in this group than the general population. So we really believe we can have a good impact here for this group of patients. Stacey Simms 8:46 You know, again, I hate to ask stuff about our personal experience, because it isn't applicable to everybody. But I will say when our insurance switch to pharmacy Dexcom It is so much easier for whatever reason than going through Durable Medical, I don't know if it's the billing or just they're more efficient. I am now on a new insurance and in fact a durable medical so I'm not Yeah, thanks a lot. I got spoiled for a long time. But is is that the idea then to try to switch as many people as possible and as many insurers as possible to pharmacy and then my guess my question would be well, why? What's in it for you guys? Kevin Sayer 9:20 Why is it good? for us is it's easier if we are going to have this therapy be used by all as one users and then later even type two knives when using patients. One of the keys is making it accessible and to meet patients where they are. It is not during the normal course of operations for anybody to go through the durable medical equipment process not only the patients but their caregivers. You know, endocrinologists are used to working with all the paperwork associated with durable medical equipment. While it's a hassle they understand it. Many people with diabetes using insulin don't see endocrinologist and in fact A good friend of my wife's she knew from childhood came and stopped by business not long ago. He's a year younger than me. He has type two diabetes, he went to his doctor and he said, I I'd like index calm, I can do really well with that. And his doctors and internist general practitioner, he goes, Yeah, I've heard the paperwork on that softball, I'm not going to do it. And that was the answer that he got. And that's not a good answer ever. So the easier we can make it on everybody in the network, then the easier it is for patients to be compliant and easier to get patients on a system. And so we pushed very hard we have over 65% of lives in the US, covered lives and commercial insurance can go to the pharmacy now, but not all of them do. Most insurers insist that we have dual past durable medical equipment and the pharmacy but the most of our new patients and the majority of the new patients going on to Dexcom now are going through that channel. So we made a lot of progress. Would the advice be as people are watching or listening to if you are currently Durable Medical, call your insurer and see if it has changed. Or you can even call Dexcom or even call your insurance? See, we went again, when we get a new patient into our system, we try and determine if it's pharmacy. First, we try to determine where they can go and give them the path of least resistance to get their sensors, transmitters and everything else. So we do run a benefits check oftentimes for new patients, but not for the existing ones. They're buying product. Stacey Simms 11:30 Well, I just went through that whole process. I won't bore you with the details. We have limited time. Kevin Sayer 11:35 I'm sorry. Stacey Simms 11:36 Thank you very much. I appreciate it. Your condolences are welcome. But it leads me we were talking about the VA and G6. This is a question you know, I'm going to jump to my listeners. We have lots of questions. And one that came up everyone of course is especially our listeners are so well educated, they're so up technically on everything. They're already waiting for the G7. I'm not even sure they want me to ask you about the G6 anymore. But the question that came up, and I think it applies to the VA as well as will Medicare cover the G7? Or should we anticipate issues with production? And all that that happened last time? Kevin Sayer 12:07 know that? You know what? That's a very fair question. So I don't feel at all beat up by that we, we got an approval on G6 months sooner than we'd planned. We knew how much better it was in G5, we were planning on launching a system in the fall and instead lost it in the spring when we weren't ready. And we literally spent a year and a half trying to catch up. We have enough capacity now to build enough G6es to handle what we need very comfortably. And the factory looks so different than it was before. I mean, everything is literally automated robotic arms put every single thing together. And off we go. We are building that same infrastructure with G7 long before its approval. And the equipment we bought for G6 is not going to be applicable to G7. So we're starting over. But we are getting automated lines up and running for G7. Now we have equipment scheduled to come in over the course of the year. And in all fairness, we're not going to do that, again, we're not going to watch it for a group of people because we only have this much capacity, we're gonna when we go, we've got to be ready to roll the thing out, we will continue to produce the six because there will be use cases and geographies, then we won't flip to G7 immediately based upon our planning and our capacity, but we are going to we want to be ready to slip everything immediately. That's our goal. Right? Stacey Simms 13:24 So the you're not anticipating a production issue. But in terms of and again, I know it's complicated when you're working with CMS. And when you're working with the VA, there's no reason to expect that there would be issues with those groups. Nope. Separate Kevin Sayer 13:37 notion. We have been structuring our contracts in a matter whereby the G 6, 7 conversion, the simple what was difficult in the past are the durable components, the transmitter and the receiver, which he said and there's no transmitter everything's in the sensor, so we don't have to deal with that much anymore. And, and yet receivers, we will continue to sell them but it's getting much simpler, the same rules will be applicable. So we do not believe there'll be a big problem going from one sensor to the other reimbursement wise. Stacey Simms 14:10 All right, so let's get to these questions. And some of these guys are very technical. So now I'm putting my glasses. Okay. I know you can't I don't know if I want to get it right. Okay, so Chris wants to know, what about plans for integrating data with reporting systems their partners use, for example, I have CGM going to my pump and the Dexcom app. Tandem has released t Connect. And the only reason that he's using the Dexcom app right now is the clarity, goal tracker. Any any ideas about further integration with the T Connect especially because people are going to start using that from their phones maybe next year. Kevin Sayer 14:46 Yeah, we work with all of our partners, we were what we would like nothing more than to have all the data log into our clarity system to give patients that option. The the issue we have with it is we're all still Companies, you know, some companies believe this data is theirs, and they, they need it proprietarily it's been slow for us, quite honestly, to get data from all the other pump companies into our clarity system. We do have agreements in place where we're working on that we have that with Insulet. We're talking with Tandem about that. Now we're talking with other companies about it, we reciprocally are more than willing to give our data to be displayed into their app and their education systems. So we do share data with those who want it we have API's to whereby they can pull the data and display it if the patient gives them permission. And our criteria for accepting companies to take the data is not extremely difficult. If we view the something our patients want and need. We absolutely let them pull it through the API's. I think over time, you'll see us continue to share data and hopefully others will give us theirs. It isn't simple. Everybody has their own opinions. Stacey Simms 15:53 Well, and that's another question that I've received in the past was kind of the API. I may not even be using this correct verbiage here, well, they remain open. Because there are lots of people who've developed secondary apps, some are fun, some are very useful to people. And I know that there has been a lot about open source in the community Kevin Sayer 16:12 know our API interfaces are still there's a process one goes through to get that information. But by and large I there's a lot, I don't have a number 60. But I know it's certainly more than 50 could be over 100 companies who pull data from our API's into their system. And we have kept that relatively open and shared. Do I think you'll remain open? Yes? Will there be times when we say no? Sure. You always say no to something. So for example, if somebody says I want to dam the API, so I can compare you to all your competitors and say Dexcom isn't any good look at the other guys. giving you access to our API's, we don't we don't need that. We do view the data as the patients but we also view the infrastructure we build and the money we spent as investment we make for our shareholders. So it is a fine line to walk and we'll continue to look at it. Ultimately, we hope to have a live API and or whereby if you're running the Dexcom, Apple want the live data on your app, we can offer that option as well as certain partners. And you know, that's on fire with the FDA, we'd like to get approved relatively soon. So once that that's out there, we'll pick some companies and do it. But we also want it to be up to Dexcom standards. So...
/episode/index/show/diabetesconnections/id/16263365
info_outline
"We Treat the Data" - DreaMed Diabetes Wants To Help Lift The Burden
09/29/2020
"We Treat the Data" - DreaMed Diabetes Wants To Help Lift The Burden
There's new help for doctors who want to treat the person with diabetes and not feel overwhelmed with data. The people at are behind the brains of the Medtronic 780G system, but they're hoping to help thousands of people who may never use an insulin pump by making diabetes data a lot easier for doctors to use. This week, CEO and Founder Eran Atlas explains their Advisor Pro system to Stacey. In TMSG a big award for a doctor you all may know better as an Amazing Racer and I learn the word Soccerista. In Innovations – women and diabetes tech design. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (beta transcription - computer only) Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke. hypopen, the first premix autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:23 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, there is so much data when it comes to diabetes that even your doctor would like an easier way to interpret numbers and make dosing recommendations. A new first of its kind technology called DreaMed may help Eran Atlas 0:43 with the use of your system. I can stop being a technician I can learn to being a mathematical or an engineer, I learned how to be a physician and I wanted to continue to go and practice medicine. I don't want to go and practice engineering. Stacey Simms 0:55 That's DreaMed co founder and CEO Eran Atlas, talking about the reaction he's getting from people who use their system will explain what it's all about and how it could help in Tell me something good. A big award for a doctor you all may know better as an amazing racer, and I learned the word soccerista. innovations. Let's talk about women and diabetes tech design. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm so glad to have you along. I'm your host, Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection, as well as stories of technology. And that's what I'm talking about this week. And I went into this episode, I gotta tell you sort of thinking it would be one thing, because I know many of you are very familiar with the technology and these companies. DreaMed is behind the algorithm that's inside the Medtronic 780 G, which was just approved in the US. And we actually are talking to Medtronic and our very next episode about that many other things. But the agreement with Medtronic and DreaMed was it was done several years ago. And DreaMed while I'm sure very proud of that algorithm, they've moved forward, they moved on they want to talk about something else. It was very interesting for me to go through this interview, and I hope you enjoy it as well, for more of the mundane, less technology and more basic, how much more basic can you get with diabetes and insulin? I'll give a quick update at the very end of the show. I had mentioned in a previous show, we had some insurance changes, a bunch of you wants to know how that was going. Hey, yay, insurance changes are always fun. So I will talk more in detail about that at the end of the show. But in terms of insulin, yeah, we're switching types. Don't you love that? We had been on novolog for many years. And then when Benny was I want to say about eight or nine. We switched insurance and they switched us to human log and we have been on that ever since he's 15 and I guess it's time to go back to no vlog. So I'll talk more about that at the end of the show. Luckily, we don't have any issues or haven't had so far I know a lot of people do. Fingers crossed. So yeah, insurance update and more at the end of the show. All right. Interview with the CEO of DreaMed in just a moment. But first diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device you've seen this. It is sleek, compact, seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription, you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more. My guest this week is the co founder and CEO of DreaMed and is really company with the slogan we treat the data you treat the person Eran Atlas talked to me about everything from their partnership with Medtronic. As I said they develop the algorithm that's inside the newly approved 780 G to their newer technology. And this is all about helping doctors better interpret the data they're getting from CGM and pumps. He mentioned a brand new study on this, comparing their algorithm very favorably to outcomes from Yale and Barbara Davis diabetes centers. And I will link that up in the show notes at Diabetes connections.com. I learned a lot from this conversation. I really hope you enjoy it as well. Here's my talk with Eran Atlas of DreaMed. Eran, thank you so much for joining me. I'm excited to learn more about this. Thanks for coming on. Eran Atlas 4:49 Thank you very much for having me. Stacey Simms 4:50 All right. Tell me just generally, what is DreaMed What does this mean for the diabetes community? Eran Atlas 4:56 Well, you know, for a certain amount of years A lot of effort has been invested on, let's get more accurate glucose measurements, let's get more continuous glucose measurements, let's get those glucose measurements and insulin measurements being connected. And everybody told us that if we will have more data, more accurate data, more accessible data, all the problems about managing people with diabetes will be solved, right, because the patient will be more knowledgeable, the providers will be more knowledgeable, will have the tools to get into a better decision. Now DreaMed started as a technology team within one of the biggest Institute's that treat people with diabetes, Type One Diabetes here in Israel. And what we saw there is that data is not all and and sometimes in order to make this analogy, these logic thinking between data and decisions, there is a lot of gap that you need to jump in order to make that move. You need to be experience, you need to know what is important, what's not important, and you need to be able to make the right decision in the right time for the right patient. So what dreamed is taking on is we would like to take the responsibility of allowing providers and patients to make better decisions about insulin dosing. When we started in 2007, the Holy Grail was okay, let's try to develop these automated insulin delivery algorithm that will make these decisions in real time. And we managed to do a prototype and we published these results as were the first publication in New England Journal of Medicine. And finally, after didn't several clinical trials send people home, we were the first group in the world that sent people home with automated insulin delivery, we licensed that to Medtronic diabetes. But the cohort of people that are going to be using are currently being using automated insulin deliveries pretty small depend on the amount of people with diabetes type one type two that needs to make decisions about insulin. So what dreamed is now focusing is on developing those and commercializing those algorithms that will be able to take all the vast amount of data that's out there, and it can be accessible from cloud to cloud, mobile and everything. And how do we get into the most accurate, personalized decision about how much insulin a specific person with diabetes need to infuse? Not just in terms of real time, but more about looking on the treatment plan? How to optimize carb ratios? How to optimize basal treatment, how to optimize insulin sensitivity factor? What is the difference between a patient on an insulin pump to a patient that is using multiple daily injections based on only different kinds of types of injection regimen? That's what DreaMed right now to do. So we would like to make sure that we will treat the data. So a person with diabetes can continue to live in a provider can start dealing with the person that is in front of them and not just looking into the computer, making himself a technician with numbers and decide what to do. Stacey Simms 8:04 you have heard the podcast. So you know, I'm easily overwhelmed by data and information. I listened to everything you said. And here and I'm trying and here's what I heard. We want to make life easier for you. There's too much information that comes your way even with accurate CGM. Even with automated insulin delivery, there's so much data and information that unless you are a numbers person, you know, you may not be able to crunch it yourself. And I know you, you mentioned already a lot more down the road. But if I could focus on that the automated insulin for just a moment and come back to some of the other things. Can you just tell me as I'm listening and please correct me if I'm wrong, Vinnie, my son is using control IQ with the algorithm that's inside the Tandem pump using partnering with Dexcom. Is this sort of that? Is that the first step that you're talking about when you talked about automated insulin? Is it the algorithm that controls the pump in the CGM together? Eran Atlas 8:56 Correct. We started in 2007. Building such an algorithm at the time we called him the medical doctor, the MD logic artificial pancreas. And the idea of what is different between the algorithm that we developed back then and the one that you have right now in control IQ, is how do you make these real time decision about how much insulin to infuse and, and while control IQ, as you may know, is using MPC technique, a Model Predictive Control, and you have that model of Medtronic that uses a different kind of type of control. It's coming from the engineering world, we were strong in understanding how physician analyze data and what we did is we took a technology called fuzzy logic, and I thought you know what fuzzy logic is but I'm sure you have it in your washing machine, and you have it in trains in China and everything. And the idea behind fuzzy logic is that you know why the world is not one and zero black and why there has to be a mathematical way to make decisions based on gray areas. And it's pretty much the way that we're thinking as a person. So, we took his the way that physicians analyze data, make a decision and automated using dispatches fuzzy logic. And we develop these automated insulin delivery algorithm. And we tested it and when he got the the ability to communicate with Medtronic pumps, and now, we have our some part of our algorithm is going is inside the Medtronic 780G that they announced that they got to see mark for that in June DC or in there, I'm sure that they're going after that the FDA, the main difference between what we did and what happened in control IQ and Medtronic 670 G, is the fact that we were the first that play with the changing automatically both the basal and bolus. And we have the ability to predict glucose into the future and dose insulin based on the predicted glucose. Some of the elements that we have, you have also in control IQ. And I noticed Ctrl Q is working pretty well. But one of the things that we had in that time is the understanding that there's a lot of sensitivities off the patient that these AI D algorithm will need to use. So for example, when you are using your control IQ, you still need to go through your meals, right? So you need to optimize your carb ratios. And some of the safety limits are still dependent upon the insulin sensitivity factor off the pump or the open loop basal rate of the pump. So the algorithm is like riding on that basal rate. So we had a similar methodology. And we developed these what we call today, the DreaMed Advisor. It's that algorithm that optimize the sensitivity factors. So I back into the time we have two pieces of our technology. We only licensed one of it to Medtronic. And we continue to develop the other one because we believe that the other one will have a much more larger number of people with diabetes. Stacey Simms 12:01 So tell me about that other one, where will it be used? Or you're talking about people with type two or people who use insulin, any type? Eran Atlas 12:08 So that's an interesting question. So we just we started with an algorithm that basically optimize open loop pump therapy, and we took data from CGM at the beginning. And history of pump delivery basically did an automated way what any physician is doing in the clinic right now. And we developed that technology we got we won a grant from Helmsley Charitable Trust back then in 2015. I out of 70 applicant applicants got $3.5 million to evaluate the performance of this algorithm versus doctors from Joslin Diabetes Center, the School of Medicine yell, Barbara Davis in Colorado University of Florida, within three sites in Europe, with the intention to show that if you are a physician, any kind of type of physician that uses all algorithm, you'll get into the same clinical outcome as if that patient data was analyzed by doctors from these leading academic diabetes centers. And yesterday, the results of the study were published in Nature medicine, showing that we are doing the same outcome. As expert Doc's. If you can think about it, 60% of the cohort, we type 1 diabetes, the adults one are being treated by primary cares where we can do to the to the glucose control of these patients, if we will equip those primary cares with a technology that helps them analyze data and get the same performance as special endocrinologist, what we can do to the touchpoint of changing the insulin treatment of a patient, if instead of the patient will need to wait 3, 4, 6, 8 months to see his endo will have some sort of virtual place that he can send the data and share the data with the algorithm the algorithm will make all the calculation and recommend how to change the insulin dosage or the insulin treatment plan of that patient. So that was the what we did so far. And when we approach FDA, we that FDA didn't know how to regulate such a device. Yeah, because there was no predicate to what we offer to FDA to do. So what we managed to do with a very strong partnership with the FDA team is to decide and we will regulate this device as a new product. So in 2018, we got FDA clearance based on 510 k de novo. So we are the first in the US system that regulated a product that an algorithm can take continuous glucose sensor data and make recommendations to our healthcare providers how to optimize insulin treatment for our patients. Stacey Simms 14:44 So I'm trying to break it down because that does sound like such a useful tool. I'm an adult with type one, I'm seeing a general practitioner who may not know the nuances of treatment, they take my CGM data, they take my dosing data either I'm assuming either from a pump or from me They send it to your service, the care provider, the doctor then gets the data back and can give the patient advice based on your technology using the expertise and you know, from the algorithm. And that new study said that advice is comparable to Yale and Barbara Davis and all the places that you indicated. Did I get that right? Unknown Speaker 15:21 Exactly. Stacey Simms 15:28 Right back to Eran in just a moment. And he's going to be explaining their agreements with other diabetes groups like Glooko, like Tidepool, but first diabetes Connections is brought to you by Dexcom. And do you know about Dexcom clarity, it's their diabetes management software. And for a long time, I just thought it was something our endo used, you can use it on both a desktop or as an app on your phone. It's an easy way to keep track of the big picture. I try to check it about once a week, it really helps Benny and me dial back and see longer term trends, and help us not to overreact to what happened for just one day or even just one hour. The overlay reports help add context to Benny's glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom logo. Now back to my interview with Eran Atlas Eran Atlas 16:27 And the way that it has been flowing in so we sign a data partnership with gluco. With Dexcom, we take all we have our own platform, so the patient can download the data at home, he doesn't have to get physically to see the provider, which is super important, especially now when it COVID-19 is and then the data is coming to our system, all the provider needs to do is just push a button request the recommendation here we'll get that recommendation and nothing's going to get you know, blurred the things you know, please consider looking on. He will get exact numbers that the algorithm will tell them listen at 6am change the call ratio, that specific patient from one to 15 to one to 10 exact numbers. Stacey Simms 17:11 All right, I have two questions. From a very practical point of view. I'm curious if you've run into a provider who says I can do this better? I don't need this. Sure. I don't know the difference between Lantus and Tresiba. I'm a general practitioner. But why do I need something like this? Have you run into resistance from providers? Or are they I could see the flip side, thank goodness for taking this off my hands because I don't have the time to learn all of this. Eran Atlas 17:37 So there are two types of providers. So first of all, that the approval that we have right now the clearance that we have with FDA is just for type one people on insulin pump, we are pursuing the advance of the indication for use for the injection cohort and with the intention to submit it by the end of the year. But in the study that we did, and right now we are we already deployed the system in several clinics around the US. You know, we are in Stanford University, University of Florida, New York University, Texas Children's so that we are already people who have already more than 1000 people that use the technology. And so when we heard for them, these couple of things. So number one, it became they curious, they want to check, we want to make sure that we didn't make any false recommendations. And they're not agreeing 100% with anything that we are recommending. So we always allow them to edit. If there's anything that they would like to edit, they can edit it before they share it with a patient. But as time goes on, and they building their confidence with a system, they are relying on the system, and they're really feeling how they've helped them. So for example, Dr. Greg Forlenza from Barbara Davis said, you know, what would you use of your system, I can stop being a technician, I can learn to be...
/episode/index/show/diabetesconnections/id/16189940
info_outline
"I'm Happy I Did It" - Volunteering For a COVID Vaccine Trial With T1D
09/23/2020
"I'm Happy I Did It" - Volunteering For a COVID Vaccine Trial With T1D
Helene Cooper has type 1 diabetes, asthma, and she's Black. All of those factors increase her risks if she catches COVID 19. They're also exactly what the researchers behind one of the vaccine trials were looking for. She's now in that Phase 3 Trial and shares what it's been like. Helene is also a reporter for the New York Times, covering the Pentagon and has an incredible story that began well before she was diagnosed with type 1 at the age of 15. In Tell Me Something Good, a few high profile birthdays and diaversaries Plus, Innovations – see through is your organizational friend. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week taking part in a COVID vaccine trial. Reporter Helene Cooper has type one and asthma and says she decided to apply after she met Dr. Anthony Fauci backstage at Meet the Press. She says at first, he wouldn't really answer her questions about her odds Helene Cooper 0:44 And finally, he just he was standing by the door to go on air as we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really need to not get it. Oh, God, I really need to not get this. Stacey Simms 1:00 Helene is now in a phase three vaccine trial. She's a New York Times Pentagon reporter and talks about what it's been like doing her job and living with T1D during this pandemic in Tell me something good a couple of high profile birthdays and diversities plus innovations. Why see-through is your organizational friend. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. I'm your host, Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. That was back in 2006. My husband lives with type two. I don't have diabetes, I have a background in broadcasting. And that's how you get the podcast. There is so much in the news these days about the potential for a COVID vaccine. news about the trials political news about vaccines. This episode is a personal story about one woman's experience going through one of the vaccine trials. So I just want to let you know about that right up front. And a big thank you to Gillian McPhee, who in the Facebook group Diabetes Connections The Group shared the article that Helene Cooper wrote about her experience getting into the vaccine and a lot of what she shares here on the show, but I will link that up. I reached out to Helene on Twitter, and she graciously responded. Now Helene has an incredible story, even before she signed up for this trial. I mean, well, before she was diagnosed with type one at the age of 15. She and her family fled here from Liberia. And I'm going to link up that story in the show notes at Diabetes connections.com. It'll be on the episode homepage. I'd really urge you to read that. But one of the problems with the vaccine trials was all of the COVID vaccine trials is getting enough people into them. I'm also going to link up more information on that and I'm going to come back after the interview and talk a little bit more about it. I know you want to hear from Helene. And we'll get to that in just a moment. But first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the sleekest looking and most modern beater My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data at any time. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo. My guest this week is doing us all a huge service by participating in one of the trials for the COVID vaccine. As we recorded this interview, Helene Cooper had taken the first shot. She is due for the second in just a few days as this episode airs. Helene is a New York Times Pentagon reporter, but she says that's not why she was selected. She explains it is because she lives with type one, she has asthma, and she's black. There are not enough people from any of those groups represented in any of the vaccine trials. I tried to cover a lot with Helene and as this is an ongoing story. She was gracious enough to agree to come back on maybe a couple of weeks that she's further along and share more about her experience. So here is our talk. Hello, and thank you so much for taking the time to talk to us about your experience. I really appreciate it. Helene Cooper 4:35 I'm happy to be here, Stacey. I've never been asked to talk to diabetics before. So this is kind of cool. Stacey Simms 4:40 Oh, nice. Well, I always like to tell guests like you that you don't explain the difference between type one and type two. We speak the language. We get it. I'm just so interested in so many of your experiences. But let's start with the COVID vaccine trial that I saw that article came to my attention. How did you get in the trial to be If you could kind of start from the beginning, Helene Cooper 5:01 okay, I was watching Dr. Fauci on testify, I think it was before the House. It was either July 30, or the 31st. And he said that all of these vaccine trials were getting underway. And he said they needed volunteers. And he rattled off the name of a website that you could go to to volunteer. I don't know why I did it. But I just went on to the website, and I filled it out. I said, I was type one diabetic, I put that I have asthma I did. I filled everything out and went on about my business. And then a couple of weeks later, I was in the Outer Banks. So it was like, it was somewhere around August 28, the week of august 22 23rd 24, something like that. I got a phone call on my cell phone from GW from a clinical research associate, who said I had been picked for the Maderna trial. And then I got nervous, because it's like, it's one thing when you fill out the questionnaire, and you think they're never going to call you and then they call, she said that I've been picked because I was type one diabetic, they needed to see if the vaccine was safe for people like me, I asked her a lot of questions. Because my first fear that a friend of mine had put in my head was what if they give you the vaccine, and then send you to like a high risk area and ask you to wander around without a mask or anything like that. And I thought, Well, I'm not doing that. I've been super careful for the past six months, because I think we heard pretty early on, I still remember that sinking feeling in my stomach back in February, and March where they started talking about the high risk people and seeing diabetes. And it just said diabetes, it didn't say type one or type two, which drove me crazy, because it's like, these are two different diseases. And do they mean but whatever. When I saw I had run into Dr. Fauci back in on March 8, when I was in the green room for a Meet the Press episode. And the first thing out of my mouth, I walk in, and he was sitting on the chair, and it's like, wow, look, it's like I recognized it from TV. And I was I immediately started talking to him about COVID, because that's what he was there to talk about. And I was like, Well, I'm type one diabetic and blah, blah. I was like, you know, what happens if I get it? And he was like, he kept. He wasn't beating around the bush. But he kept saying, you need to not get it. And I was like, Yeah, but what happens if I do get it? And he was like, No, you really need to not get it. And he wasn't he wasn't answering my question, but not answering my question. And I wanted to know like, okay, most people get it and there's a 98% chance they'll be fine. My like a 93% chance or what, exactly what, and finally, he just seems standing by them. He'd walked out the door to go on air, because we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really needs to not get it. Oh, God, I really need to not get this. So I have covered the Ebola pandemic in Liberia. In 2014. I didn't Liberia for a month during Ebola I and at the time, I understood then that I really needed to not get Ebola as well being a type one diabetic. So I put into place my Ebola protocols. I think I called them on March 8, where I was washing my hands all the time, I was staying away from I stopped touching people. I was I've been and I've been really careful. I wear masks. I only just now recently stopped wearing gloves everywhere I went that I had been doing that for a while. And nobody's come into my house except my mom, my sister and my nephew. And brother in law. I'm like, so I'm probably much more careful than most people are. Because I think we kind of have to be because there's so much we don't know, I'm just rambling at this point, not letting you ask any questions? Stacey Simms 8:41 No, it's wonderful. A lot to unpack there as Yes. So let me go back when you said there's not a lot of information about type one and type two, we you know, in the community, we're talking about that all the time. Helene Cooper 8:52 Yeah. One of the things everybody I've asked about it has said they don't because I went to my normal diabetic doctor, and I was asking her about this. And she said the problem they don't know. All they know is that the people who showing up in the hospitals and needing to be put on ventilators and leading and having severe reactions and get you know, and you know, getting really sick and dying. A lot of them tend to be diabetics, but then I asked, you know, are they type one are they type two, and they're certainly type two, but she seemed to think that they're type ones as well. And that's what this is based on. This is at this point. There's so much about Coronavirus that we don't know COVID-19 that we don't know. And so the whole high risk category for diabetic that has been determined simply based on the fact that these are the people who are showing up in the hospitals. Stacey Simms 9:46 So let's talk about the vaccine trial, get the call. Helene Cooper 9:49 I get the call. I freak out. I call my friend first I called my normal doctor but she's very super cautious and her response was like Why does it have to You. So I was like, Okay, I'll Park this somewhere for a second. And I called my friend, Kendall Marcus, who's an infectious disease specialist. Her response was immediate, she was like, vaccines are super safe, you should do it. And for Kendall to be just complete, like, usually she's cautious, too. And she's like, you got to be careful. But it was just complete. No, you should do it. And so I got a, you know, we talked through it. And she, you know, explained some very complicated sounding stuff about how they work because I thought they were going to be putting a little bit of COVID in me, and but she said that the modern no one was not that is messenger RNA is basically tricking your body into making antibodies by feeding you a little bit of mRNA, that makes your body think that it has COVID. So she was like, there's no chance that you could catch it from this, when there's no chance that you could give it to anybody from this. And so I went, I showed up for my appointment, it was on a Wednesday, they give you it's, you're there, I was there for three hours, they gave me a COVID test, the nasal swab, because if it comes back positive, you're not going to be in the truck, because there's no point of you being in the truck. They gave me a lot of time, they gave me a full physical, took blood made me take a pregnancy test. There's all this stuff. And towards the end, then, is when I got the shot where the doctor was like, Okay, you've been randomized, you know, the blind woman is like the double the unblinded person is coming. Because of course I hadn't read they told me all of that in a sheet that they sent me that read talking about that, which is my own fault. And then the nurse came in with the vaccine, and she was not even looking at me and as a reporter, I'm, like, filled with questions. It was like, Are you kidding me? Like, is that what is that? Is that the placebo? Is that the vaccine? Which one? Is it? Going through all of this? I want to make sure I you know, I'm getting the vaccine, I know placebo, and she was just like, you need to just, you know, she said nothing. Stacey Simms 12:00 Well, yeah, if anybody else knows besides that person, then it can be, it can ruin the whole study! Helene Cooper 12:07 I got so much s--t from people when I put that in the article that I was harassing the woman about this dude, like you're violating the sanctity of the study. But it's just like, you kind of want to know if you got the placebo vaccine. When you posted your story in my facebook group for the podcasts. People were very well they Yeah, not pleased. No. Stacey Simms 12:30 But I can tell your personality, right? Yes, Unknown Speaker 12:33 you can laugh. No worries. Stacey Simms 12:36 One of the questions that actually came up in the Facebook group was whether you were the only person with diabetes in the trial. Now obviously, you don't know anybody else. Helene Cooper 12:42 But it was. I am not because ever since I wrote that story I've gotten a lot of people have tweeted me, including type one diabetics were in the trial who have been and there's this one guy who's been so great, because he's like, let me tell you what happened to me I'm in the same type of trial. It's like his was with Pfizer. I think mine is butchering it, but it's the same technology. And he was like, the first shot felt totally normal, just like you and then the second shot, my sugar level shot up, I was sick for 36 hours and then it went away. And he was like, but it was just as if I had you know, how you get when you're diabetic with a flu, your sugar level goes high and all that kind of stuff. I was like, that means you got the vaccine. And he was like, well, be careful. You know, because just the cuz you sound like you don't think you're You got it, but I didn't I didn't think I got it when I got the first shot. And the second shot was like, Huh, so now I'm worried about the second shot. Stacey Simms 13:32 Well, I was gonna ask you, did you have any kind of reaction blood sugar wise to the first one? Nope, nothing. I mean, Helene Cooper 13:37 just some aches and pains. Um, some muscle joint, which I don't, I think was because I was camping on the beach. And I got like the the I got the stuffing pounded out of me by these ferocious waves was Stacey Simms 13:51 curious if you asked your friend who said what if they give you the vaccine, and then they want you to test it by wandering around a hotspot? I can't imagine that's actually part of any clinical trial. Helene Cooper 14:02 I would think wouldn't you do that in phase one? It's not part of phase three. But what's the What is it? Wouldn't phase one be remember? Did you see Contagion? Stacey Simms 14:14 Right. But she did that on her own? Helene Cooper 14:16 Yeah, but they got it tested some kind of way. How are they going to find out if it works if they don't see if it works? If they don't expose people to it? Yeah, shape or form. I mean, he was getting at. I got a lot of grief for that for putting that in the story. But I thought that was a very legitimate question to ask. And as a non medical person, that's what you're gonna wonder. Stacey Simms 14:42 Okay, I'm gonna jump in here for just a couple of minutes. If you are wondering about that point yourself or maybe you are screaming at the two of us in frustration. Here's the real deal about how they do vaccine trials. Once participants get a vaccine will the researchers intentionally expose them, right? That's what we're talking about here. Will the researcher send a lien into a crowd of people as in the movie Contagion? Which, if you haven't seen it, it's a 2011 movie. It's all about if you haven't guessed, it's all about a pandemic. There were scientists who worked on that movie and made it very realistic and therefore quite terrifying. But to the question of did they send people who got the vaccine out into infected crowds? No, of course not. That is unethical. I did a little bit of looking into this. And so here's what most of the publications say, because there are still no effective therapies to prevent someone exposed to COVID-19. from falling seriously ill intentionally exposing patients is a no go. Instead, the idea is to observe the number and severity of naturally occurring infections. Among the many thousands of volunteer participants who receive vaccines, or placebos. If there are notably fewer infections, or milder infections among the vaccinated group, that's how they tell the vaccine is working. So I want you to take a moment and clarify that and we will go right back to my talk with Helene in just a moment. But first, diabetes Connections is brought to you by Real Good Foods. We've been enjoying Real Good Foods for almost two years now. And I got to tell you, I think with all of their new products, everything's great. But the pizza that we started with is really still our favorite. And we got an air fryer A while back. And that has really taken stuff like this to the next level. Although my I shouldn't say that because my husband still prefers to heat up the pizza, in a frying pan, or saucepan, kill, just heat it up that way. I don't know, maybe he doesn't wanna get the air fryer out. But to me, it's crisp beer, it tastes better, one less pan to wash at the end of the day, you can find out more about where to buy Real Good Foods. Our whole line is available in Walmart and local grocery stores. You can also find everything online, go to Diabetes connections.com and click on the Real Good Foods logo. Now back to my conversation with Helene, where we are finishing up talking about that movie Contagion. And obviously, that movie was worked on by experts. Stacey Simms 17:14 We've all heard all those stories but I haven’t watched it since COVID. Started, I can't bring myself out Helene Cooper 17:16 a good No, you gotta go do it. I did it. And I like it'll, it'll, it'll make you even more careful. I watched it in March. I was like, Oh, hell no. Stay. Oh, Stacey Simms 17:30 I will. Alright, I'll have to go back and look at that, then what happens? Is it a second shot? And then you're done? Or do you? I mean, they'll follow you. But are you done? Not Helene Cooper 17:38 that they follow you up? Um, there's an app that you have to...
/episode/index/show/diabetesconnections/id/16080086
info_outline
"I've Never Dwelled On It:" 66 Years of Living Well With Type 1 Diabetes
09/15/2020
"I've Never Dwelled On It:" 66 Years of Living Well With Type 1 Diabetes
Jeanne Martin was diagnosed with type 1 diabetes at age ten, in the 1950s. Technology was very different back then, of course, but so was the medical community's reaction. Jeanne was told she would never have children and if she did, she wouldn't live to see her children grow up. Today, Jeanne not only has a daughter, she's also a grandmother. She shares what she’s learned along the way. We also talk to Jeanne's daughter Jessica, who talks about growing up with a parent who has type 1. In Innovations, find out why when it comes to keeping track of long and short acting insulin, a CDE says invest in rubber bands. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ---- Other episodes with amazing people living long and happy lives with T1D: ---- ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:24 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:30 This week, Jeanne Martin was diagnosed with type one at age 10. Back in 1955. She's had to fight a lot of doctors along the way, including one who told her she would not live to see her child grow up. Jeanne Martin 0:45 And my reaction was I told my husband that guy can go walk up the street and get hit by a bus tomorrow. I'm not going to go along with that. That's was my reaction. I got mad. I didn't buy into it. I didn't get depressed because I Just thought he was full of baloney. Stacey Simms 1:00 Jeanne was right. She's now a grandmother. And she shares what she's learned along the way that made her question and stand up to doctors like that. We're also joined by her daughter, Jessica, who shares with like growing up with a parent who has type one in innovations this week why a diabetes educator says invest in rubber bands. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two that was back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get this show. I spent 20 plus years and local television and radio news. I've been doing this show for more than five years now and I don't remember Ever putting the topic of the show to a vote, but I did that for this week, I put up a poll in our Facebook group, it's Diabetes Connections, the group, I have a couple of interviews. I'm usually a few weeks ahead with interviews in the can. And I asked the group to vote on which interview they wanted to hear next, and everybody chose Jeanne, I cannot say blame you. I am always amazed at the strength of these people, the stories of people who are living well with diabetes for 50 60 70 years. I mean, you think about it, before blood glucose meters were a thing. I mean, they weren't available to the 1980s. And this was a time that we're talking about with Jeanne before some doctors would even know about different types of diabetes. I was shocked to learn that that for a very long time, it was just diabetes and you treated it with a one shot a day, or then they would say juvenile diabetes. And you couldn't possibly have that if you were an adult and you're just on and on. And if you're new to the show, I've done several interviews with people who were diagnosed in the 50s in the 40s. And they've lived with type one for 70 years. And I will link those up with this episode. You can also search with a very good search engine at Diabetes connections.com. We're up to more than 320 episodes. So if you want to Google keywords like living long or 60 years with diabetes, that sort of thing. You can find that on the website. Before I get to the interview. I want to read something that was sent to me it's actually a review on Apple podcasts. I'm really bad at asking for reviews and keeping up with reviews. If you want to leave one up man, I would love it. Whatever podcast app you listen on, there is a way to leave a rating or review. This one came in from Shelley. Now her name is not on this but I know who this is because we featured her. We featured her son in a recent show. So Shelley wrote I love this podcast so much. I learned so much from listening especially enjoyed the tech episodes with Dexcom and Tandem etc. As the mom of a newly diagnosed four year old. I have found much needed encouragement and tips for helping and thrive with diabetes. Also, cannon was excited to hear you mention him swimming in the lake. Surely thank you for writing that. Yeah, we talked about cannon she had sent a picture into the Facebook group about him burning off the glucose. She said swimming in the lake pan swimming is one of those ways where Benny used to just those little kids just swim with every part of their body. They used to go low all the time in the pool. It's a little bit different. Now you know, a 15 year old does not swim like a four year old. But surely thanks for sending that review in. It's always nice to get reviews like that. And if you like the show, truly the best thing to do is to tell somebody about it tell somebody in the diabetes community. That's the best way to get the word out. All right, Jeanne and her story in just a moment but first diabetes Connections is brought to you by One Drop, getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized tester plans plus you get a Bluetooth a glucose meter test strips lancets and your certified diabetes coach, subscribe today to get the test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the One Drop logo. I feel like I've known Jeanne Martin for as long as my son's had diabetes. That's almost 14 years. And that's because while I have never met Jeanne in person, I have been friends with her daughter Jessica Graham for even longer than those 14 years. We met when Jessica was in public relations here in Charlotte, and I was working as a health reporter for a local TV station. And later we were on the board of our local JDRF chapter together. I cannot believe it has taken me this long to share Jeannes story. She is just incredible. I was able to talk to Jeanne and Jessica, about living well with type one for 66 years. Jeanne and Jessica, thank you so much for joining me. I've known Jessica for so long, but I don't know so much of this story. I'm so excited to talk to you both. Thanks for coming on. Jeanne & Jessica 6:17 Thank you for having us. You're very welcome. Stacey Simms 6:20 Jeanne, I got to start with you. Because you have lived with type 1 diabetes now for more than 65 years. Let me just start out by saying How are you? How are you doing? Jeanne Martin 6:30 I'm doing great. I think I'm doing just fine. Stacey Simms 6:35 What do you mind if I ask what technology you use how you manage anything you'd like to share? Jeanne Martin 6:40 Well, I checked my blood sugar with little contrast test strips. And I shoot nice. Well, I take shots Stacey Simms 6:49 you can say brands, we’re all friends here. Jeanne Martin 6:51 Yeah, I say I shoot myself four times a day. I see my doctor every six months. Well, that's about it. Jessica Graham 7:01 She does not use a pump or Stacey Simms 7:04 any of that. No, if you don't mind, let's go back. Do you remember what it was like when you were diagnosed? You were 10 years old. Do you remember anything about that time? Jeanne Martin 7:13 Oh, yes, I do very much. We lived in a very small town, not far from the Mayo Clinic. We just lived there a couple years. My friend's mother mentioned to my mother that I was drinking a lot of water and going in the bathroom a lot and she thought maybe my mother should have me checked out. So we did in the small town with the with the doctor there said, Well, she's either got diabetes or TB. Well, I didn't know what diabetes was. And I knew what TB was. So I thought, Oh, please don't i don't want TB. I'll have the other and so so the little basically country doctor didn't know what to do. So anyway, so they sent me to St. Mary's, which is public Have the Mayo Clinic. And they tested me and for sure that's what I had. So I had to stay there. I think it was five years. I didn't do all this stuff with the diets. And they wouldn't let me leave until I could get myself a shot. But I was active. And I don't really remember too much about it. The doctor were very nice, and everybody was very helpful. And back then you had glass syringes and needles and you couldn't check your blood sugar. You had to pee on the stick, and they sent me home and my mother had to weigh everything, and I had to watch what I ate. But other than that, that's about it. Then I just basically went on with my life. Did you Stacey Simms 8:46 really? Were you able to jump back in go to school, do all the things you wanted to do with that time? Jeanne Martin 8:51 Yeah, I did. Stacey Simms 8:52 Mm hmm. It seems like such a different time, right. I'm just trying to think, Jeanne Martin 8:55 Oh, yeah, it was a very different time and when I first got married, Remember, I had to boil my syringe once a week, we had to do that. And I was still peeing on a stick. And I only had one shot a day back then all through, you know, school. And of course, I didn't want to tell my friends when I was in high school. That's what I had. But of course, my mother told my best friend's mother. So everybody knew it, but I didn't know they knew it. Oh, wow. Stacey Simms 9:25 Anyway, moms are sneaky that way. But yeah. The you know, the regimen was so different. You had one shot a day, right? And then you had to kind of eat around that shot. Did you have problems as a teenager? Did you do remember, you know, any issues or were you able to buy I would assume by routine and by figuring out what to eat, you know, how did it work out for you? Jeanne Martin 9:47 Well, I didn't run into any problems when I was a teenager. And I do remember I don't know how I would go not very often, my friends and I and I would have hot fudge sundaes. Believe it But other than being bad like that, I lived at home and my mother, kind of watch what I ate. And I didn't need a lot of sweets. You know, it was my mother's management, not mine. And I came home for lunch all during school. And I didn't start taking more shots until about, oh, I don't know, maybe 45 40 years ago. Stacey Simms 10:23 Yeah. It's so different to think about because we're talking about I mean, if doing my math correctly, you were diagnosed right? In the early 50s 1950s. Jeanne Martin 10:30 Right? And 1955 Stacey Simms 10:33 Yes, so the routine was completely different. I mean, as you're listening, you got to understand not only one shot a day, but no blood sugar home meters, right. You're still checking. How often did you check done by check? We mean, pee on the stick. Jeanne Martin 10:50 I probably did it maybe once a day. I honestly don't remember that. Not a lot. It's very different now. And somehow, I think my pancreas has always worked a little bit because I don't take much insulin. And I'm very, I don't want to say touchy with it, but I don't have to take a lot. And when I was diagnosed at the Mayo Clinic, they said that yes, my pancreas was working a little bit. That's what they thought. And I still think that's the case because I just don't need much insulin. And and I watch what I eat. I do, but you know, I'm not 100% I mean, I do have cookies, Stacey Simms 11:30 but you're told us you were eating hot fudge sundae. So the cat is out of the bag… Jeanne Martin 11:35 That was in my youth. You know, I do take care of myself. Now. I check myself four times a day, shoot up four times a day and I watch myself better now because I know better. I'm more wiser. Stacey Simms 11:48 I'm curious to growing up. Did you know anybody with Type One Diabetes and if not, when did you meet somebody with no, Jeanne Martin 11:55 I never knew anybody. I didn't know anybody with any kind of diabetes. It wasn't in my family, so none of my relatives had it. No, during high school I did not know, as an adult. I have met very few type one diabetics, I know they're out there, but very few. And it's kind of fun when I do just to kind of say, Well, you know, compare notes, so to speak. Sure. Stacey Simms 12:21 Just let me ask you a couple of questions. Because the perspective of a kid, you know, we're all adults now. But a child growing up with type one in the house and the type one is in the parent is not something that I've talked a lot about on the podcast. What's your earliest memory of your mom and diabetes? Jessica Graham 12:38 Well, I don't ever remember it not being there. And that was more because I worried about her than it was her. There was never literally and I'm, I mean, this literally, there was never a day when my mom said, Oh, I don't feel well or Oh me, you know. My sugar is off, or I just don't feel good today, never. And so it was nothing that she did. I just knew that if mom started acting funny, I needed to get the orange juice. So I remember that I never had a problem with shots. And I think that's because I always saw you give yourself a shot. So it was just, it was always there. The other thing that I remember is that I was always told that it skipped generations. And so I do remember I don't even know if you remember this. But I remember at one point when I was little, I told mom that I didn't want to have kids until there was a cure, because I didn't want my kid to have type one. And I she got really mad. My mom never got mad. But she got upset at that and told me that was absolutely you know, the wrong attitude to have and that she had a great life and it didn't have any impact. And so that was the end of that but it was just always there. So just always a part of life. Jeanne, I'd love to hear your perspective. On when Jessica who now has a I want to say a tween a teenage Yeah, yeah. just turned 13 Yeah. Wow. Stacey Simms 14:07 I want to hear your reaction Jeanne to when she said that! Right back to Jeanne answering that question but first Diabetes Connections is brought to you by Real Good Foods. True story from my house. Benny came downstairs the other night, open the freezer door, looked in it close the door and said who ate the mint chocolate chip ice cream. And I had to say it was the I finished it off. Sorry, Benny. But they're Real Good Foods. Ice cream is really good. We had a vanilla chocolate and mint chip this last time I promised him I would buy more and I have to get the peanut butter kind as well. We haven't found the ice cream yet in our grocery store freezer so I get that online but our grocery store carries a lot of the meals and they are so good and super easy and basically just heat them up. If you have an air fryer. It's even better They have everything from pizza to breakfast sandwiches to bowls, these new bowl meals that are really nice entrees. Find out more, check out that mint chocolate chip ice cream for yourself. It stays frozen. They they package it up the right way. I was worried about that, but no need to worry should have known. Just go to Diabetes connections.com and click on the Real Good Foods logo. Now back to Jeanne answering my question about her reaction. When Jessica told her she was really concerned about having children. Jeanne Martin 15:33 Well, I didn't want her to dwell on it. And I didn't want her not to have kids. You know, it's so much more advanced nowadays. And there's so much more that they can do. And I always do hope for here. I mean, I've been hanging on that for a long time, but you never know, one of these days. No matter what your problem is. You just have to get along and do the best you can and get along with your life and not dwell on it. And I've never dwelled on it. Stacey Simms 16:02 Well, I'm curious too, because now we know and I've heard that too. it skips generations. We know it absolutely does not. But I'm curious Jeanne, you know, when you decided that you wanted to have children? Did anybody try to talk you out of it? This was a very different time for diabetes. Jeanne Martin 16:14 Well, I was told that I would have a hard time having a child. And so we put up for adoption. And we were waiting to hear and I went to the doctor and thought I had a tumor but the tumor was Jessica. So I thought, okay, so we said, you know, we were going to have a baby so we don't need to adopt and they said, Well, why don't you wait to see if everything is okay. And I said, okay, because the doctors told me that Jessica only had a 40% chance of being born alive. So we waited and she was screaming and kickin, so she was Fine. So we stopped the adoption because we didn't need two babies at one time. And I didn't see her for I think it was like two or three days. She was in an incubator because her blood sugar was low when she was born, but then after that, she was fine. And I was fine. And that's it. Stacey Simms 17:19 I'm sorry. I'm still on the tumor. Jessica Graham 17:24 Well, and I'll add to that, because, you know, she won't tell you this part, but because she was diabetic, she couldn't have any medicine or or painkillers. When I was born, and you were in labor, what, 24 hours? No, no, Jeanne Martin 17:39 it was, I don't remember 13 hours. So it was a Jessica Graham 17:42 ridiculously long and I was stuck behind a piece of cartilage. And so I wasn't coming out. So she went through hell delivering me. But it all worked out. Yeah. Stacey Simms 17:54 Oh, worked out. things really have changed. I mean, Jeanne Martin 17:58 Oh, yes. And I also was I would not live to see my child grow up. Now I've got a 13 year old grandson. Stacey Simms 18:07 But let's talk about that, because I've heard that from so many people diagnosed not only in the 50s, but even as late as like the 70s and 80s. This Doomsday of you're not going to live past 30. And I know that for many people, that unfortunately was the case, there was not the care. There was not, you know, whatever they needed, but it seemed as though in some ways, the doctors, I don't know, I don't want to editorialize here, but they seem to have this Doomsday approach. And when you were told that Jeanne, what was your reaction? I mean, I think a lot of people would have said, well, what's the point? Oh, Jeanne Martin 18:37 I'm kind of...
/episode/index/show/diabetesconnections/id/15989381
info_outline
Learning From A T1D Sibling, Who's Now A Diabetes Educator
09/08/2020
Learning From A T1D Sibling, Who's Now A Diabetes Educator
When Shaina Hatchell's little brother was diagnosed with type 1 at age nine, she knew her life - and her life's goals - had changed forever. She decided she would teach everyone about diabetes when she grew up. Now a registered nurse and certified diabetes educator, In this episode she shares her story and answers listeners questions about teaching kids with T1D all about acceptance. In Tell Me Something Good, cheerleaders and a lot to cheer about and.. our newest segment.. Innovations.. new studies and approval for the latest hybrid closed loop pump systems. .. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 This week when her little brother was diagnosed then 12 year old Shaina Hatchell knew her life and her life's goals had changed thanks to their diabetes educator. Shaina Hatchell 0:38 It was in that moment of her teaching my entire family teaching me allowing me to trial everything that I realized like this is what I want to do with my life. So at 12 I already was telling my mom, I'm going to be a diabetes educator one day because I loved it so much. I love learning. Stacey Simms 0:54 Shaina is now a registered nurse and a certified diabetes educator. She's also the author of a new children's book about type one. And she's answering your questions about kids and T1D In tell me something good cheerleaders and a lot to cheer about, and in our newest segment, innovations, new studies and approval for the latest hybrid closed loop pump systems. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I am so glad to have you along. If you are new Welcome. My name is Stacey Simms. I'm your host and we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. He is now 15. He's a sophomore in high school. So we've been doing this for a while. My husband lives with type two. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast and I'm laughing a little bit because as I was recording that, I don't know what I said, but I activated the Siri I just said it again on my phone, don't say anything, okay, didn't activate it. And he started talking. So if you heard that I apologize. But it's funny sometimes. And I promise I'll get to the guest to the diabetes stuff in just a minute. But I was talking about my radio days recently, I worked a long time in radio, and I'm taking part in a podcast festival, a virtual podcast Festival, which is all about learning and sessions and panels and stuff, kind of like diabetes festival, or I guess, more like a diabetes conference. But it's all about information and podcasting, and we were talking about my time in radio. And it's amazing to me to think about how many people worked on that show that I was on. I did a four hour morning news show with a co host and a sports guy and you know, reporters and lots of moving parts and running around this little studio. But we had sound engineers and we had producers and you know, we had interns that we had so many people working on that show. And so to do a podcast, of course is usually I mean unless you're NPR or You have a lot of corporate power behind you is usually a one person or maybe a two person show. I do have an editor who helps me out after the fact. But it's when little things happen like my phone going off that I remember those days. Not that I'm really itching to go back to spending five hours because we did also have an hour show prep in the studio, which was the size of the room that I'm in right now about the size of a, let's call it a standard bedroom with four or five, six people every day, starting at four o'clock in the morning. So I can't say I recommend that. Oh, my goodness, sorry to get off on such a tangent, but I am taking part in the Charlotte podcast festival. If you're at all interested in podcasting, I will link it up. I'm sure you could attend. It's free. And then later on in the show, I'll get back to diabetes conferences and tell you what's on tap because there's some interesting changes happening. Of course, everything's still going virtual, but some new announcements and I will get to that a little bit later on in the show. Okay, Diabetes Connections is brought to you by One Drop, and I'm really impressed at how much they just get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo. My guest this week is the author of what is meant to be a series of books for children and families about type one. The first book released is called Shia Learns, author Shaina Hatchell is a registered nurse and CDE and her brother was diagnosed when he was nine. The book is adorable the illustrations are really top notch. It's gorgeous. But the substance, of course, is what this is all about. Shaina talks about her family's story. And she answered some listener questions that you sent in about kids and type one. And she gets these kinds of questions every day in her practice. She meets a lot of new onset families. She talks about that and a lot more. Here is my interview with author Shaina Hatchell. Shaina, thank you so much for jumping on. I know, it's been a really busy time for you with the pre sales, but the book is out now. Thanks for spending some time with me. Shaina Hatchell 5:32 Thank you for having me. I'm so excited and it's been busy, but I couldn't miss this interview. Stacey Simms 5:37 Oh, thank you. All right, let's just jump right in. But we'll talk about your background and your brother and everything. Let's start by just talking about the book itself. What is Shi'a learns, tell me the story of the book. Shaina Hatchell 5:50 Oh, right. So I have been wanting to write a book that does some sort of diabetes education for many years, even before I became a diabetes educator, there have been a lot of experiences that I've had in my home with my brother and my parents that I felt like when we were going through certain situations, it would have been great to have a book that would have kind of given us a little bit more guidance, because we only see the doctor every three months. So now that I had the time and I felt like you know, I had enough knowledge to really create what I wanted to create. From the beginning I decided to go ahead and start writing some books. And in the beginning, Cheyenne learns wasn't the title was just me writing honestly, more so like poetry style books about diabetes education, because I love poetry, and then it kind of just dawned on me like okay, this is turning into a series and this should be about a child and let me just go ahead and title it Shai learn. Shi'a is the name of a child that I lost during gardening. decided that, you know, this was another way for her to be bored. And then just having her be the title of the book she learns, which is actually perfect for me. So the reason why I wanted to make her a young African American Girl is because I wanted to help with the disparities and care that some African American face. And I do that by increasing education with the book in the topics that will come in not only this first book, but the books to come, as well as increasing representation. So that is the reason why we're starting with preDominantly African American characters, but that is going to grow, because I want everyone to feel represented in these books, Stacey Simms 7:39 a lot to unpack there. But let's start with the book itself. That first, as you said, it's a series what's the story of the first book? Is it her diagnosis? Your take me through it? Shaina Hatchell 7:49 Yes. So in the first book, it's actually going to be explaining in following Shia and her parents in their journey for a new one set in the hospital. So basically in the first one Shia is going to start to have some films that the parents notice are not normal. And so they take her to a hospital. And mom explained to the providers, what she's been noticing about Shia. And then they do a couple of tests and they diagnosed her with type 1 diabetes. Then in comes the diabetes educator Dom who will start to explain to the family, you know what type one diabetes is how insulin works in the body, and give them everything they need for discharge. So it's literally just that first story that anyone who has a loved one with type one or if they're the type one themselves, have experienced, you know, that first new onset experience. Stacey Simms 8:45 I gotta say, the illustrations are just beautiful, but one that caught my eye. Oh, yeah, one that really caught my eye is the depiction of insulin as a key, right where we're explained a lot. Can you take us through what that illustration is showing, and I know As you're listening, I'll put some things out on social media and in the show notes, you can see these photos. It's an adorable depiction of what insulin does. Shaina Hatchell 9:08 Yes. So anytime I educate because as a diabetes educator, I do preDominantly new onset education. So this first book is literally what I teach almost every single day. And when I'm explaining to families, what insulin does in the body, I always draw the picture on the board. And so I sent this to my illustrator and she did an excellent job. Thank you, Candace Bradley, you did an amazing job in actually bringing this to life. But what I always say is that when we eat carbohydrates, we eat food that has sugar. So your carbohydrates are even if we had like a regular juice or soda, which is sugar in the simplest form, you know, the carbs broken down in the stomach turn into sugar and then the sugar that pure sugar goes to the bloodstream. And when there's more sugar into the bloodstream, the body sends a message to our pancreas that sends a message to our body. To sell to release the insulin, and insulin is the only key that can unlock ourselves so that sugar can go inside and be used for energy. Stacey Simms 10:09 Our endo use the exact same analogy with the key and I I wish I had a book like this to show my two year old. I don't think he even has that analogy in his head to this day. Tell me a little bit more about your story. Your brother was diagnosed when you both were kids that has to have influenced you. What do you remember about his diagnosis? He was nine. Shaina Hatchell 10:28 Yes, he was nine and I was 12 years old. I remember when he started to lose weight. And I remember when he started to drink a lot of water and go to the bathroom a lot. And that was probably for like, I want to say two weeks before we my mom, I say we but I was too young to be a part of that before my parents decided that they needed to take him to a doctor's appointment, but I remember just seeing him like the weight and then at nighttime, he started to put sheets from off of It started with sheep into his pants into his pajamas. So that if he went to bed while he was sleeping at night, it would like be on the sheets and not all over the bed. And I remember like, of course, as an older sibling in older sibling fashion, like making fun of him about it. And I think that's when my mom was alarmed because my brother was upset with me. And I told her why he was upset. And you know, I made a joke. And then I went to school. And when I got out of school, I got in the car with my mom. And usually my brother was first to be picked up. So I was expecting him to be in the car with us. But he wasn't and my mom was sitting and says, We're on our way to the hospital, your brother is in the hospital. When I got there. I just remember being really confused and feeling really bad about the joke I made and learning that he has type one diabetes. My family had never heard of a kid being able to get diabetes. And we had no idea that this was even possible for our family because we didn't have a family history of it. So we were kind of confused and then we of the day, the next day was a diabetes educator who explained everything. And it was in that moment of her teaching my entire family, teaching me allowing me to trial, everything that I realized, like, this is what I want to do with my life. So at 12, I already was telling my mom, I'm going to be a diabetes educator one day, because I loved it so much. I love learning. Stacey Simms 12:22 But today, kind of pat you on the head and say, Sure, sweetie, are they Yes, we understand. And this is Shaina Hatchell 12:27 something you're gonna do. My mom is like, amazing. She actually is like, Yeah, well, you know what? We need you. So yeah, you do this when you get and it was like it. From that point forward. It was kind of like a thing like Shay is going to become a nurse and she's going to be a diabetes educator. And I went to vocational high school and got my LPN at 17. And it was like, we're gonna make sure you get there. So they were actually super supportive from the beginning. It's fantastic. Stacey Simms 12:56 And your brother is in the book, right? Am I he's one of the characters Shaina Hatchell 13:00 He is he is a diabetes educator. So Dom is his actual name. And Dom is the name of the diabetes educator in the book. And he is the educator, because he taught me way more about diabetes management in the home and you know about diabetes in general, and how it affects the person then, than anything I've learned in any textbook or any other experience. I got that firsthand knowledge directly from him. So it was only right that he'd be the educator in the book. Stacey Simms 13:31 You know, you you talked about how you want more representation for the African American community. We want to see more black characters in these books, and curious, there's so much misunderstanding, even in the middle community about diabetes and I hear stories of people who are Latino who are black, who have been told you can't have type one, you have type two, or you know, you don't understand what's going on. It just seems like there's a lot of medical disparities. Do you recall the Did you and your brother face that When he was being diagnosed I know right back to our chat but first Diabetes Connections is brought to you by Real Good Foods. Real Good Foods is all about making delicious foods you feel good about eating high in protein, low in carbs and always made from simple real ingredients you feel good about eating. their newest products include these bowls they have these great meal bowls, Mongolian beef, lemon Chicken, Chicken lasagna, all low carb and in a handy little bowl. You can get all of their items delivered or find out where to buy. They're in our local Harris Teeter I know they're in the Walmart here as well. And you can find that in their store locator right on the website. While you were there. I highly recommend you get some ice cream. They do a great job of shipping the ice cream I was a little nervous about that. But it comes fully frozen. They do a terrific job and it is so good. My whole family loved the peanut butter I am always partial to chocolate and I thought the mint chocolate chip ice cream was top notch. Find out more go to Diabetes connections.com and click on the Real Good Foods logo. Now back to Shaina answering my question about whether there were any questions of the doctors minds that her brother had type one. Shaina Hatchell 15:22 So when my brother was diagnosed we didn't face that. Personally, I think that his signs were pretty clear that this was type one. There was never a question for type two. But this is something that people of color do experience and I do have a friend of mine that she started to have the increase in, you know, thirst and urination and all of the crystal clear signs. She is an athlete, very thin and always healthy. And she went to the doctor's when she was experiencing these things and she was older and they automatically put her on That format and told her this was a type two diabetes, they didn't even try to test to test her for like any sort of type one. They didn't do any antibodies, any labs. It was just this was a type two diabetes because you are an older teenager, and you're African American, like that's what this is. And of course it ended up being type one. And so seeing her experience that and the frustration of thing I'm taking this Metformin on eating healthy, I'm exercising like you asked me to, and I still don't feel good. And not being heard initially was it was very difficult for me to see that because you know, me, I'm like, No, I know my brother is like, no, it's not it's got to be. And so to know that, that is an experience that many people of color with diabetes have is heartbreaking for me. And so just for like, if there are books that are available, that people of color that do not have diabetes at all can read, that will give them more of an understanding of what is happening in the body of someone with T1D, that if they see someone experiencing it their cousin, family member friend, that they'll be like, Oh my goodness, this is what I read in this book when I was a kid. And so you should ask them to check you for type one diabetes, or you know if they're experiencing it themselves, but they'll think you know, what I remember, these were the things that were talked about in that children's book. And so I should definitely be pushing more toward them. Checking for type one specifically, I Stacey Simms 17:28 can't tell you how many listeners I have who diagnose themselves because of the baby sitters club books. So you know, it does work. Right. Exactly. It really does. So my listeners had some questions for you, if that's okay, if I could jump in and ask some advice questions, because you do work with families. Thank you so much for letting us do that. So I like this one a lot. Um, Valentina asks, how to handle remarks about what it is that you eat. She gets asked, What is that on your arm? Why do you get to keep that Your phone and nobody else can use she feels overwhelmed by the questions her friends are asking any ideas to help kids deal with that? Shaina Hatchell 18:07 Yeah, you know, that can be it can be overwhelming to constantly get these kinds of questions. And so a part of why I created the book is that this will be something that children again, not living with diabetes can read, and start to understand a little bit better what's happening to their friends. And so being able to give them a book that is entertaining, that has these, you...
/episode/index/show/diabetesconnections/id/15903752
info_outline
Minisode #11: Let's Stop Saying: "Kid First, Diabetes Second"
09/03/2020
Minisode #11: Let's Stop Saying: "Kid First, Diabetes Second"
It didn't take long after my son was diagnosed for someone to tell us, "Kid first, diabetes second." Benny was diagnosed in 2006, but that phrase has been around a long time in the diabetes parenting community. I get it. We shouldn't take away all the things that make childhood fun and special, because of a diagnoses of T1D. We also don’t want diabetes to be the first thing people think about when they consider our children and we don’t want diabetes to dictate every decision we make. But the more I think about it, more I think that phrase misses the mark. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available at Amazon as a paperback eBook and audiobook. Learn more at Diabetes connections.com Announcer This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 Welcome to a mini episode of the show. I'm your host, Stacey Simms, and I'm really glad that you joined me for this now these episodes I do occasionally are more. I'd call them more editorials. I do interview shows week by week if you're a longtime listener, you know that but this year I added in these mini episodes these minisodes just me, I am not a medical expert. This is more mom to mom advice. Just from my experience as a longtime parent of a child with type 1 diabetes, what I've learned and what I think can help. My son was diagnosed with type one when he was 23 months old. Stacey Simms 1:00 that was back in 2006. He is now 15 and a sophomore in high school. Oh, my goodness, he is he's very comfortable with diabetes is very confident. He's very independent. And while we are far from perfect, we are doing a great job according to our endocrinologist, and that's all I really need to hear. This subject has been on my mind for a while. So let's just get into it. I want to talk about the saying, kid first, diabetes. Second. It's been around our community for a very long time, probably longer than I've been a part of the community almost 14 years now. But I just don't think it works. It doesn't work for me. I don't think it works for anybody. So let's talk about it. What is kid first diabetes second all about? I think we know what it's supposed to be right? You hear this most often right after diagnosis. And it means that you know, your life shouldn't change that much. Stacey Simms 2:00 From what it was before, or you know, you shouldn't take away all the fun things that make childhood childhood. And we don't want diabetes to be the first thing people think about when they consider our children. And we don't want diabetes to dictate every decision that we make. Now for some people, kid first diabetes second means letting them have a giant Sundae, or go to a pizza party. Now it doesn't have to be all about food. I did say it to myself years ago when I let my son go to regular sleepaway camp, not diabetes camp for two weeks when he was eight, and he has gone a month every year since then. So I've said that to myself, right kid first, diabetes, second, let's do this. But the more I think about it, the more I think it misses the mark. Kid first diabetes second, isn't right. It seeks to separate the diabetes from the kid, which is impossible to do. Or maybe it's not impossible, but it doesn't sit right with me. Stacey Simms 3:00 Here's why implies that you're sort of cheating on diabetes. We're going to put diabetes aside, we're going to put it second. So we can do this other thing that every child should be able to do. Put the kid first, what we're saying is that kids with diabetes, shouldn't be able to do that shouldn't be allowed to do that. You're just letting this be a special case, because it's fun. And it's about being a kid. It's as though we're saying diabetes can't be part of a real childhood, a good fun, a wonderful childhood. take it one step further. And we're actually implying that diabetes can't be part of a good fun, wonderful child, or ultimately a person. It sounds dramatic. I know. But I really don't think it is. Looking at this a slightly different way. I talked about it just a bit in my book, the world's worst diabetes Mom, I use the analogy of the Hulk there. Alright, so when Benny was very young and ready Stacey Simms 4:00 He was diagnosed just before he turned two. We couldn't explain to him exactly what was going on, you know, you know, when your blood sugar is high, you can be so grumpy, you can be unreasonable not that a three year old is always reasonable to begin with. But it was so hard to explain to him what was going on. And it wasn't until, I mean, really till about age four or five, that we were able to start working on a few strategies to help and one of the best involve the Hulk. We started telling Benny that he was a lot like the Hulk. I don't have to explain to the Hulk is right, the Marvel superhero, big green guy, comic book, TV show, movies, that whole thing. Okay, so we started telling Vinny that he was a lot like the Hulk when his blood sugar was high, and he felt angry and mean. But unlike the Hulk alter ego, Dr. Bruce Banner, we said he could learn to control the big green guy. So we started by having him recognize that he was high. This was before the days of Dexcom for us, so we would just test blood sugar, and then Benny would work on removing himself from the situation. He could go Stacey Simms 5:00 It was room and beat up a stuffed animal. Or he could yell into a pillow. He could sit quietly with me, he could color he could drink water, he could be mad. But he couldn't release the Hulk on other people. It wasn't perfect, but it really helped him process what was going on in language that he could understand as a little kid. So fast forward to the Marvel Cinematic Universe. And this is, of course, the movies, the Avengers movies, and we're big comic book people. We have seen every MCU movie together by family, we all have our favorites. This was really as an aside us such a fun part of our, I don't wanna say our family history that sounds very high and mighty. But my children really were old enough to see these kind of movies just as they were coming out. And now they're older and they don't want to be with us as much and we were able to see all of them together. And it was fun in between arguing about the theories and talking about the characters and we saw the last I want to say four or five movies on preview night I would get tickets on the Thursday before they were released and we always will Stacey Simms 6:00 A big deal about it. So it was great. And if you're familiar with the movies, or even if you're just familiar with the character that you know, the Hulk is always struggling, but the character is right. He has two distinct sides, Bruce Banner, and the big green guy, and they work in opposition. And that's kind of what we were telling Benny right this side can't understand that side. Or you know, when you're high. You're not you. You've got to get control over that part of you. Then we saw Avengers endgame. And I almost fell out of my chair when smart Hulk showed up. I What is he? I guess he's called Professor Hulk. But whatever he is called. Bottom line is that Dr. Banner has figured out a way to embrace his Hulk side, and the two are at peace. I looked this up. Yes, I did some research into Professor Hulk. Marvel says equal parts intellect and brute strength. The professor represents banners ideal version of self. And that's it. That's my hope for Benny. Now I have to stop for a second and say I can Stacey Simms 7:00 Knowledge I am saying all of this as a person without diabetes, I'm the mom, I'm not the one living it. So I understand he has to find his own ideal point. This is exactly what I'm working toward. My son can't take diabetes and pretend it's somebody else. Yes, that worked when he was three or four. But in his young adult and adult life, he can't take his bad moods and its highs and lows and push them off on the other guy. I'm of course not saying highs and lows are not real. Obviously they are, they need to be acknowledged. And they in many cases need to be accommodated for by the people around the person with diabetes. But those highs and lows are part of diabetes, so they're part of him. And if Benny is able to embrace the side of him that he sometimes wants to reject, he will be that much stronger. And that brings us back to kid first diabetes. Second, it needs to change. It needs to change in our thinking to simply kid with diabetes. So what is that Stacey Simms 8:00 That mean in practice, birthday cake? Yes, that is a life with diabetes, sleep over sure that's a kid with diabetes, soccer practice without me there. Same thing. I think if we treat these events and foods, like we're somehow cheating on diabetes, or somehow separate from it sends the wrong message. I mean, think about for us without diabetes. I am not eating birthday cake every day. But I sure I'm gonna have it the next party I get to go to knowing that. Do I then have to say, woman first birthday party attendee second? Or maybe mom first mom who really needs to eat more salad and fewer desserts second, I mean, you share that right? There's that guilt. Right mom, first mom who shouldn't be eating cake second. And it's not always about food. As I've mentioned, milestones and events are very relevant here too. So if you're saying kid first diabetes, second about, let's say a trip with the grandparents, you know the older sibling when Stacey Simms 9:00 The grandparents did a special trip. And then a couple years later, the younger sibling with type one wants to go insure kid first diabetes. Second. Well, you're really telling your family that kids with diabetes shouldn't be able to do that. You're just allowing it, because it's fun. And it's about being a kid. It's just being a kid with diabetes. It's not easy to change our language about diabetes. I've been saying kid first, diabetes second for years. I looked it up. And it first shows up in my blog, in 2011. But words matter how we talk about diabetes matters. And our kids are listening, even when we think we're being careful. So I'm gonna stop saying kid first diabetes. Second. That is not how I actually parent and teach. It does not work for us. And it's not how I want Benny to think about his life with type one. So what do you think? Agree? Disagree? Remember, I am the world's worst diabetes mom. I'd love to know what you think you can email me Stacey@Diabetes-connections.com, or find me on social media, I'm linking up everything in the episode homepage. The show notes for this will be at Diabetes connections.com. You can find all 320 episodes of Diabetes Connections there. We also have an extremely robust search. So you can search by keyword by topic by date, and find whatever topic you are looking for. But I'd love to get your reaction here, especially if you've listened this far, and you're an adult with type one. What do you think about all this? The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes is available on Amazon in paperback eBook and audio book. I hope you check it out and read some reviews. It is all about our journey with type 1 diabetes, but it also features some mom to mom advice. And it gives you some suggested questions to bring to your next doctor visit that always confused me. How am I supposed to know what to ask if I don't even know what I don't know. Hopefully I can help you out there. All right, I will see you back here next week for our regular interview episodes. Thank you so much for joining me. Stacey Simms 11:00 I’m Stacey Simms, until then be kind to yourself. Benny 11:08 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
/episode/index/show/diabetesconnections/id/15858326
info_outline
"Rip It Off and Squeeze It Out" - A New Way to Treat Lows
09/01/2020
"Rip It Off and Squeeze It Out" - A New Way to Treat Lows
What do you use to treat lows on the go? One of the newest options is a flexible necklace, filled with 15 grams of fast-acting glucose. The Thrive Glucose Gel Medical Alert Necklace is easy to take with you, rip off and open if you need it. The idea came to first responder Kris Maynard after his own severe low had to be treated by paramedics. His family had tried to use the "red box" emergency glucagon kit but missed a vital step. Kris also shares that one of his teen sons has been diagnosed with type 1 via TrialNet and explains how their family is coping with that knowledge. New segment this week! Innovations – focusing on hacks and tips and tricks to make our lives easier. And Tell Me Something Good! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:20 This is Diabetes Connections with Stacey Simms Stacey Simms 0:26 this week, what do you use to treat those on the go? One of the newest options is inside a necklace. The idea came to first responder Kris Maynard, after his own low had to be treated by paramedics because his son didn't know how to mix up the glucagon correctly. Kris Maynard 0:44 Why am I not carrying this for something that we know that works, and as an EMT, for 100% of the calls that I've been on for low blood sugar 100% of the responses have always been glucagon is just too much and it expires, Stacey Simms 1:00 we'll talk about Kris's solution, the thrive necklace, and his son recently was diagnosed with type one. He shares that story new segment this week innovations, focusing on hacks, tips and tricks to make our lives easier and tell me something good. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you on. You know, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host Stacey Simms. My son was diagnosed with type one right before he turned two back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and radio and TV news. And that's how you get the podcast. Quick birthday shout out to my mom. If you are listening today. This goes live on September 1. It's My mom's birthday. And she had a great line recently that I wanted to share with you. I was talking about how amazed I was with control IQ. We traveled back and forth from New Orleans recently to drop my daughter off at college. And Benny came with us. We rented an RV. I told this whole story last week, but it was basically you know, 11-12 hours in the car there. Same thing on the way home. And if you've done a long trip of any kind, you probably know that you need to raise your basal rates. We have done lots and lots of car trips. My parents are in Florida, we're in North Carolina, they spent the summer in Delaware. So we're all over the place. Except, you know, in the times of COVID, where we haven't traveled at all this was our first trip. Gosh, since everything started since March, probably but we've always had to raise Benny's bazel rates at least 50% that may seem like a lot, but he's very active kid and you know, sitting still, we really needed to increase basal rates by quite a bit over the years. And of course now with control IQ, we don't change them at all and it does all of the work for us. I was absolutely amazed. For the two days that we were on the road. I only grabbed a screenshot of our trip there. I didn't look on the way home. But he was 84% in range for that time with an average glucose of 139, which I will take hands down any day, which it would translate, I guess to a one see if like 6.4 or 6.5. I mean, it's only two days. But that's if you're if that's how you look at the numbers, that's what you would get. Now, of course, when we got to the hotel, he fell asleep and didn't have insulin and his pump. He wasn't in my room. He was in my husband's room, so I'll blame them for that. I wait a minute. I know that. Nope. We got two hotel rooms. So I stayed with my daughter. My husband stayed with Benny and it was kind of nice to just have it was two days that we stayed there and it was really nice just to have some time alone with my daughter. But yeah, that's that sounded weird about the separate hotel rooms. So that 84% range didn't last for another 24 hours but it was pretty close. I mean control IQ once you put insulin in the pump control Q does some incredibly heavy lifting for us. I was telling my mom about this, he was texting her about how great it was going. And she said, quote, sh—y disease, great technology. And I said to her, you know, I'm gonna send that to Tandem, because I'm sure they'd want to use that slogan. Anyway, thanks, Mom and Happy birthday to you. We have a lot to cover. This week, I've added a new segment called innovations which will be coming up after the interview. So let's get to it. Diabetes Connections is brought to you by One Drop, and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to one drug to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every one drug plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doc Visit your personal coaches always there to help go to Diabetes connections.com and click on the One Drop logo. I met Kris Maynard more than two years ago, it was July of 2018. We did an interview on the floor of the friends for life vendor area. I mean, you know what I mean? on the floor of the vendor area, that big open area, we were sitting at a table, but doing the interview various how I realized my microphones were not meant to be held. I will link back to that first interview, and you will hear a lot of that (microphone noise). That's why I bought microphones standards. But Kris Maynard's product that he brought to friends for life in 2018 was the prototype for what's become the Thrive Glucose Gel Medical Alert Necklace. He was there to get feedback, see if there was a need for the product. Kris is a first responder who lives with type one. At that same conference. His family went through trial on that testing. One of his teenage sons was found to have the markers for T1D, we've got a lot to talk about with Kris Maynard. Kris, thanks for coming on with me. It's great to talk to you again. I can't believe it's been two years. How are you? Kris Maynard 6:11 I'm doing good. It's I'm excited to be here. Stacey Simms 6:14 So much has changed. And I want to talk about not only your product and your family, there's a significant change there as well. But you caught my attention recently, because it looked like you were on Mount St. Helens. Can you tell me a little bit about what you've been doing? Kris Maynard 6:29 Yeah, well, it's something I've always wanted to do. I mean, it's really a way that I really wanted to be at a test or product. And I've learned over the last couple years, how much I love diabetics. I love being around other people that's living with the disease. So I wanted to be able to just challenge other diabetics to join us into making that hike. And I mean, it was something that physically was the hardest thing I've ever done in my life. But at the end of the day play it was so enjoyable. absolutely loved it. How long Stacey Simms 7:01 was it? Kris Maynard 7:02 round trip? It was a total of about nine to 10 hours. Stacey Simms 7:06 Now pardon my ignorance, but when I think of Mount St. Helens I only think of I think like so many people. I think of it as a an active volcano. Kris Maynard 7:15 Yeah, yeah. Okay, just make sure I'm not wrong. No, you're exactly right. 40 years ago is when it exploded here in Washington State. And we live about five hours away from it, and it just covered our city with ash. And so I was I don't remember five years old or so at the time. And I just remember wearing the masks really, of what we see being worn around today. Stacey Simms 7:41 I'm a child of the 80s I remember it's one of the the significant news events of my childhood like when they say what do you remember when you were a kid? You know, that's one of them. So living around the area, and again, pardon my ignorance, but people are allowed to climb now and you can go up there, there's no restrictions, Kris Maynard 7:56 correct. But you need permits to go there. We actually bought Tickets before co started because in April's when they start selling the permits, and those permits sell out within the first day or two. And so we got ours then to where they only allow 100 people to go up per day. And so it just happened to be that last week was our magical day. Stacey Simms 8:22 And you had a look at the pictures. You had young people, you had diabetes educators, was almost everybody in the group, part of the diabetes community. Kris Maynard 8:30 Yes, well, the most encouraging thing to me was two things is one person during the first mile was ready to call it a day. It was just too complicated in that first mile, and we'd kind of just gathered around and saw where she was struggling and she continued on was able to finish it, which was amazing in itself because when we look back, that first mile was 100 times easier than the rest and then 13 year old who's got type one. And I just physically think how hard and how exhausting it was for me. And to think that that 13 year old, was able to do it, because he had his struggles along the way as well. But for him to be able to enjoy that with his dad was just, I mean, encouraging and motivating. For the rest of us. It was amazing that he was able to finalize that exhaustive day. Stacey Simms 9:29 Did anybody need the thrive necklace, Kris Maynard 9:32 three people used it. In fact, the 13 year old ran out of supplies. That was the last thing that he had on the way back in about two and a half miles left, which was amazing because the cell service on that mountain was better there. And sometimes in the some houses or buildings that we go in and out. So he texts me saying, Hey, we just ran out of supplies. I'm worried for my son. Who just ran out of his food, his drinks and everything else. And so he said he just used the necklace. I don't know what his number was, but and then afterwards, he said it bounced back up to 157. But there was also other problems that he was also going through between the cramps running out of water. So it really wasn't about the necklace. It was being with other diabetics making that climb. Stacey Simms 10:28 Well, yeah, and I guess that's a good point. It's a good place to run out of supplies. If you're surrounded by people who also have their own. I assume that they shared with him or he got down. Kris Maynard 10:37 But I mean, by that time, we were separated, we were actually done. And so I we had to drive back to the finish line. And a friend of mine that was with me, I couldn't make the trek back because my legs were just cramped up and stiffened up and the buddy of mine who's in better shape, ran that last two miles to be able to get supplies. So, the buddy was amazing. He was the former firefighter. And another person was able to call 911, just in case, and then to see him walk that finish line to where you wouldn't have noticed that he was tired at all, or that his legs were stepped up at all. So yeah, I mean, it was fun to be able to embrace at the end and just cheer him on. And that's really beyond seeing him at the top of the mountain and then seeing him finish no one the struggles that he went through. Stacey Simms 11:30 Alright, let's talk about the thrive medical alert necklace. Give me your elevator speech. What is this? Yeah, Kris Maynard 11:37 well, it's funny because when I saw it a couple years ago, at the friends for life conference, really still at that point, it was just an idea. And we needed to figure out if it was something that was wanted or needed on the market that kind of helped formulate along with messaging that we're going through with other diabetics on now we need to make something out of it. And so learning that 80% of the diabetics Don't carry glucagon. And from the EMTs perspective 75% of the EMTs cannot administer glucagon can't give injections or can't give IVs. And so I look at it from the EMT side and from the diabetes side. So really the elevator pitch for us is we have the only wearable product to be able to help with the most common issue that diabetics face which is low blood sugar by using what EMTs use, being able to use it for any level of low blood sugar from a low to a severe state. Stacey Simms 12:35 No, let me just clarify that because I've always confused when I hear that one of the EMTs do how do they treat low blood sugar if they come across someone who needs that kind of help? Kris Maynard 12:44 Well, I'll take you from a time that I was unconscious camping with my kids is that they take the glucose gel, bring it and rub it on their finger and just massage it on the gums to become absorbed. And it was funny because that But it happened to me. I've administered it many times throughout my career, but I just never thought of carrying it myself because we always had glucagon. Well, that time that the ambulance was called for me, my son administered the glucagon for me called 911. What I thought that he knew was how to properly put it together. He didn't mix the two together. And so that was our failure on teaching him. But that's when I thought, why am I not carrying this for something that we know that works, and as an EMT, for 100% of the calls that I've been on for a low blood sugar 100% of the responses have always been glucagon is just too much and it expires. And so at that point, we're just thinking of a cheaper alternative that's really easier to find. Stacey Simms 13:53 So what was the reaction when you went from idea to product because when I last talked to you, we're not shipping as He said this was something more of a concept. What was the reaction? Right back to Kris. But first diabetes Connections is brought to you by Real Good Foods, introducing real good entree bowls, real ingredients, high protein, gluten free and low carb. So what are they're talking about here they mean Mongolian inspired beef, lemon chicken, lasagna, chicken. Real Good Foods is here to make delicious foods. We feel good about eating. And by adding these entrees, you can really see where they're going here. They want to make nutritious foods across every meal, snacks, even desserts, but they're delicious ice creams readily available at the local grocery store. We can get our products at the Harris Teeter, they have them at Walmart. Now not everything is in every store so you can find their guide. Just go to the website. You can even get a great coupon right now. And you can order online for everything that they've got. Find out more about Real Good Foods. Just go To Diabetes connections.com and click on the Real Good Foods logo. Now back to Kris and he is answering my question about the first reaction he got to the thrive necklace. Kris Maynard 15:14 overwhelming. Because again, I was thinking and an idea that day worked for me. And that's really where it was going to go to until my endocrinologist came back and said, You ought to make that available to all diabetics because you don't know how many or who you can help. And so that's when we took it to friends for life after that, and then seeing the reactions of people touching it. There was fun to see, in really all of this. The most exciting thing for me is being able to meet diabetics because before I went to that conference, there was only one other diabetic at that point that I've ever met or known. And now since then, I've met thousands. Each one of them. I get excited to meet because I love hearing their stories. I love seeing what works for them. And I love being able to share how we can help them as well. Stacey Simms 16:07 So tell me what the necklace actually is. Can you describe it because obviously, this is a podcast, we're not looking at it, although I will link up the website so people can see what it is, Kris Maynard 16:15 yeah, thrive glucose aid. It's implemented as a medical alert necklace. And as it's pulled off, I mean, it's held on by magnetic connectors. So it can really I just say rip it off, and then it becomes uncapped, like a toothpaste container. And it's just squeezed out. And you can put the tube right onto the gums, if that's the state that the diabetic needs to be able to get the help. Or I can just take it off and put it in my mouth and really just squeeze it out myself to just get my blood sugar back up. Stacey Simms 16:48 And when you say it's also medical alert, it's got the medallion on it. Tell me about that. Kris Maynard 16:52 Well, I went through a two year process, we put the blue circle on it as the symbol of diabetes because I wanted people to be Got to recognize it knowing that this is for diabetics to be able to help diabetics. And I mean, it took me two years to be able to get permission to be able to use that from the International diabetes Federation to whereas on the backside, is where it says type one diabetes or diabetes, so that again, it signifies if an EMT or someone looks at it, if they don't recognize the blue circle, they can see that it is a person with diabetes. Stacey Simms 17:26 I know you've heard this, so it's not criticism. But what do you say to people who tell you? Look, Kris, this is great, but I can just throw some Smarties in my pocket. Or, you know, I've got the icing with me, what do I need this for? I wouldn't argue with that at all. Kris Maynard 17:43 Because I mean, when I learned that only 58% of diabetics carry something to treat with hypose that concerns me that concerns me that 80% of the people don't carry glucagon. So it's that 80% that I'm scared for and I want to To help if people can eat something, or drink something, that's what I want them to do. Matter of fact, if they're conscious enough to be able to take something else, we don't want them to use the necklace because there's more cost effective alternatives. Matter of fact, with me, I carry a, like a eight ounce juice really wherever I go to where I'm saving the necklace for my wife, kids or someone else to where if I can't administer it to myself, they know where to find something. They don't need to go look in a duffel bag, a drawer, a car, wherever it might be. They know where to find it, they can rip it off and now administer it to me. Is it refillable? It is and that was another process through our FDA attorney from the get go she said it cannot be bought. Why is...
/episode/index/show/diabetesconnections/id/15819821
info_outline
"Everything in Life Seems Like It's Connected to Food!" Celiac Mom Author Ann Campanella
08/25/2020
"Everything in Life Seems Like It's Connected to Food!" Celiac Mom Author Ann Campanella
There's a lot of overlap between type 1 diabetes & celiac disease, including how hard it can be to get a diagnosis. People with T1D are thought to have ten times the risk of developing celiac and even more have a sensitivity to gluten. Ann Campanella went for years knowing something was wrong with her little girl and being brushed aside until she finally found a doctor who took her seriously. Ann shares her story in and takes some time to talk to us about her story In Tell Me Something Good, The Renegade Run is back and we share a bunch of diaversaries, with some interesting ways to celebrate. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Find out more about ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, if you live with Type One Diabetes, you have about a tenfold chance of developing celiac and there's a lot of overlap in the communities, including how hard it can be to get a diagnosis. Ann Campanella went for years knowing something was wrong with her daughter until she finally found a doctor who took her seriously. Anne Campanella 0:47 I mean, he listened to me which was wonderful for the first time I was not nervous mom or you know somebody who was just like, she's always got some issue with her child but the child is fine. So it was just great. Have somebody listen and go Yes, you're right. Stacey Simms 1:03 Ann shares the rest of her story in her new book “Celiac Mom” and take some time to talk to us and tell me something good. The Renegade run is back I'll explain. And a bunch of diaversaries with some interesting ways to celebrate. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I'm your host Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, right before he turned two he is now 15 and a half my husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast. A little bit of a different focus of the show this week in that I'm talking about celiac, which does not affect everybody with type one, but I felt like Anne's story in particular really resonated and really reminded me frankly, about our own story, I think you'll hear a lot in and that perhaps you have gone through, even if you do not have celiac if you do not have a gluten sensitivity, and that's why I want her to come on the show. She's a terrific author as well. And we talked about some of the other books that she has written. Speaking of authors, I'm just gonna take a second, I have to tell you some news about my book, “The World’s Worst Diabetes Mom”, huge thank you, to those of you who have told a friend about this, who've purchased the book and then posted it somewhere on Facebook. Because you know, with the book tour being totally canceled this year, it really changed what we had expected. Although, gosh, I gotta say, I'm so grateful. I'm going to knock some wood here. It's just been going great. We already hit the year long sales goal a couple of months ago. I mean, it's very exciting stuff, but that's not why I'm bringing it up. I'm bringing it up because I just want to mention the book to clinic program. That is something new and different that I started earlier this year. I had a pediatric endocrinologist and CDE certified diabetes. Educators asked me about the book because a couple of groups purchased books and provided them to their local peace endo clinic, so that a newer diagnosed family would get a free copy of the book. I mean, how cool is that? I kind of wish I thought of it. I didn't. But once I saw it, I knew we could help. I have some wonderful sponsors who have signed on to make this work. Most recently, I want to give a big thank you to Glucose Revival. They make the Thrive necklace, a big thank you to Pump Peelz, our very latest sponsor. And of course, the people who started me on this Frio and T1D3DGear, I'm going to link up all of their stuff in the show notes, please visit these wonderful sponsors. I'm looking for groups like that people who are small businesses, let's say in the diabetes community, and this is a very affordable way to get your message out. And of course, I'm now in the position where we're looking for clinics as well. So if you’re a health care provider listening, if you see families touched by type one, we want to give you some free books, so please Reach out and let me know you can find me on social media Of course, Stacey at Diabetes Connections.com. Okay, let's talk about celiac in just a moment. But first Diabetes Connections is brought to you by One Drop. And it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the slickest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data at any time. Instantly share blood glucose reports with your healthcare team and also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strips subscription plan, pick as many test strips as you need and they will deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes Connections comm and click on the white drop logo. My guest this week is the author of “Celiac Mom” and full disclosure She's a friend of mine, formerly a magazine and newspaper editor Ann Campanella is the author already of two memoirs and four collections of poetry. Her first memoir, motherhood Lost and Found has won numerous awards. And it was named one of the best Alzheimer's books of all time by book authority. I've known Ann and her husband Joel and their daughter, Sydney since our kids were young. Of course, I knew Sidney had celiac, but I never knew the story behind her diagnosis. And it turns out, she was diagnosed the same year that we found out that Benny had type one diabetes. Now look, obviously everybody who listens to this show and lives with diabetes doesn't live with celiac, thankfully. But there is a lot of overlap here in terms of having to advocate for ourselves to trust our gut, no pun intended there and to transition to a new type of life after diagnosis. So real quick, just to make sure we're all on the same page here. If you don't know celiac disease is a genetic autoimmune disease. It's not a food allergy. It does cause damage to the small intestine. It interferes with the absorption of nutrients in is a serious deal. It's not a joke. I think that's another overlap that we have with diabetes and celiac that people just don't take it seriously. I was really happy to talk to. And so here's my chat with author Ann Campanella, and thank you so much for joining me. This is gonna be so much fun. It's nice to talk to a friend for the show. Anne Campanella 6:19 Absolutely. I'm so excited. Stacey Simms 6:22 You know, I was struck reading “Celiac Mom”, how difficult the beginnings of this story are. And I want to talk about that and how you got to where the great place where you are now. But let me start by asking what prompted you to write the book in the first place? Anne Campanella 6:34 Well, you know, I think one of the reasons that this book just poured out of me was because, as you said, I don't think most people had any idea what I was living through. And, you know, you can talk about, oh, I wasn't getting sleep. Oh, my baby was not happy. She was crying, and people just sort of pat you on the head and go, Oh, you're a new mom. Everything will be fine, but writing that book was a way to go, you know, I want to get this whole story out, really for others who may be coming after me and experiencing this. Stacey Simms 7:10 So let's talk about what happened early on, as I said, even having known you, and I know and I know Sydney as the healthy happy Sydney that she is now. Yes. What were those signs? Anne Campanella 7:20 Oh, my goodness. Probably the first one was as a baby. She did not sleep. everybody around me who had new babies. They were like, Oh, my baby's sleeping 12 hours a night, 11 hours a night, 14 hours a night. Sydney would she would barely sleep six to eight hours, and then I could not get her to nap. And at the same time, I was caring for my mom who had Alzheimer's. So I was I didn't even know if I was coming or going. And in the beginning, she woke up like every hour on the hour. And again, people said Oh, she's teasing. thing or it's this or it's that. So that was one of the earliest signs, but I had no idea it was a sign right when she got a little bit older. Joel love to eat cereal, he pour a huge bowl of cereal so they would do the exact same thing. And five minutes later, she would be on the couch holding her stomach. In addition, I could see that she was bloated most of the time. And she just she had these teeny little arms and legs in this big stomach. And I thought, is she eating too much? You know, it was that big bowl of cereal more than she should eat. And as a new mom, I just had no clue. You know, was this normal was this not but then as she got even older, I knew that something was really wrong because she wasn't growing properly. She was basically head and shoulders shorter than all of her classmates and all of her friends would be growing in by inches and she was barely mean she was In the same clothes for like three years, so those were some real good signs. Stacey Simms 9:05 You know, it's, it is obviously very different from type 1 diabetes. But we, so many people in different communities get these doctor's visits where they'll say, oh, it isn't that it's this or, you know, we don't need to check because this is just the flu or she just needs to grow into it. Or, you know, every kid grows differently. And I'm curious, I know, you heard that a lot. I did. What was the tipping point for you, though, where you finally got the answer? Anne Campanella 9:33 You know, I guess I was, I was on alert constantly. And I did. I loved my family practice doctor. She was fantastic, with so many things, but she just didn't have the knowledge about celiac. And Sydney also had one of her symptoms was constipation, and that sort of the opposite of what a lot of kids have have diarrhea. So that didn't tip her off to it. Every single visit, I would ask I would talk about stuff. I was also searching on the internet. You know, day after day, when everybody went to bed for the short times that he was asleep, I'd be checking things out. But I actually had a friend who had, I think it was her niece had growing issues. She knew Sydney, she had known her as a baby, and she would hear me talk about my concerns. And she said, you know, and there is, you know, a doctor in Charlotte, who can deal with some of these things. He was an endocrinologist, and there were various factors that she felt like it might be worth seeing him. And as soon as I got that information, I was like, we are going to that doctor. And he is the one who very quickly I mean, he listened to me, which was one Wonderful for the first time I was not nervous mom or you know somebody who was just like, Oh, she's always got some issue with her child, but the child is fine. And so it was just great to have somebody listen and go, yes, you're right. If this isn't dealt with, she's going to be four foot eight. And thank goodness, he was able to rule things out. And then he sent me to a pediatric gastroenterologist who did an endoscopy. And that is what set us on the course to know for sure that she had celiac. We had blood tests done and the blood tests were so borderline that they did not show anything definitive. So that was something that was just dismissed. But when she had the endoscopy, the doctor said she had severe scarring. So even though the blood test, which everybody's like, Oh, just get a blood test, you know, you'll find out that did not give us the information we needed. The endoscopy, told us everything, and that they took samples of her small intestine. And the doctor knew from the moment he got in there and started looking. He didn't even have to wait for the test. He's like, she's got celiac, Stacey Simms 12:15 obviously, look, you and I are not doctors, we can't give medical advice. Right? Every borderline blood test is not going to lead to a positive result from the endoscopy. But I think it's a great point to bring up that if you're still not certain if you know, this is something that, again, we don't have this experience. But if you get the blood tests back, even though it was borderline, did you have to push for it or did the doctor say you know, to be sure, you know, I'm curious how you still got the endoscopy. Anne Campanella 12:41 I definitely had to push for it. Now, the doctor that the endocrinologist he was happy to do it. But in order to get to see him through the medical system, I definitely had to push because they were ready to just dismiss it. Which I guess you know, maybe that's the For a lot of people, but it did make me think, goodness for all this moms who know intuitively that something is not right. It's so important to just keep pushing and you know, to go for what you know, will help your child. Stacey Simms 13:15 So tell me about the transition. Obviously, when you get a diagnosis, we want to help our kids, we want to do what's best for them. But I laughed out loud when I read in your book, and here's a quote from it. She says, I have never been a cook. In fact, Joelle or husband and I survived for years on a diet of microwave dinners and take out food. So a woman after my own heart, I was the exact same way for many years before I had children. I didn't cook at all really, how do you make the transition from going out for Italian food bringing home big bready subs to what I imagine was a lot of food prep and cooking after this diagnosis. Anne Campanella 13:56 You know, it was horrendous. To be honest, it was so hard and I love hearing that you are not a cook either. Because you get this. And I feel like it's sort of like, God has a sense of humor. You know, I went in thinking went into motherhood thinking, well, I don't have to cook, I can get through this. And then he just turns things on. It's his head or my head. And it's like, no, you're gonna have to cook every single meal for the rest of your life and just see how that is. But how did I do it? I will tell you Stacey. It took me a good year before I felt comfortable at all. And I think I started the transition with just going oh my gosh, I have got to find something to feed my daughter. You know, I literally thought she was going to starve because I didn't know what to put on our plate. I figured out five meals. Okay, what are five meals that I can Give her that she will eat. And she actually she was starving. That was another symptom that she had. She was always starving, she would eat one meal. Five minutes later, she'd be asking for a second meal. And I'd be thinking, what is the deal? You know, am I creating a child who's going to have eating disorders because she, she wants all these meals. So we went from, I tried to find the meals that I used to pick up. Like, if it was Italian, like spaghetti, okay, spaghetti can't be too hard. And I found rice pasta and had to go searching the labels on spaghetti sauce to make sure that there was no gluten in them. Stacey Simms 15:46 So we should also jump in and say this is 2007 Yeah, while it was probably better than 1987 Yeah, certainly isn't what we have now. Oh my gosh, Anne Campanella 15:56 no, it's it's so much better now. You can actually go to regular stores and find gluten free food. Back then I went to the one health food store. And, and it was funny because it's health food. But basically the thing that they had most that was gluten free was cookies and brownies and cake and still defined actual meals. That was a challenge. I mean, you really had the search. And like one of the things I learned was, chicken is not always safe. It's often processed with gluten. And so for a couple of months, I was feeding Sidney chicken for several meals thinking, Oh, I'm doing so well. But she still was bloated. And as I was reading and researching, somewhere I ran across Oh yeah, chicken and there's a couple of brands that are safe, but most are not. So once I got her off of chicken, she actually sprouted that summer like three years. Four inches. Unknown Speaker 17:01 Wait, I did I miss something? Anne Campanella 17:02 Why would chicken have gluten? fresh chicken has a processing and it's processed with some kind of wheat flour or something that's in it. And if you read real carefully and it might be modified food starch or some other name that denotes wheat or gluten. Chicken is dangerous for people with celiac. Stacey Simms 17:24 I mean, I have to ask even closer you're talking about plain old naked chicken, not chicken nuggets, right? Anne Campanella 17:31 What? Chicken out like Purdue chicken is safe. But I don't even know what other brands but basically brands of chicken that you find wrapped up in the supermarket, and they haven't been cooked yet. Most of them are not safe. So if you go to a restaurant, and you order chicken, and some restaurants, they don't even know and they'll say oh yeah, things are gluten free and they're not And again, it's not a huge amount. And I should back up and say, people with celiac, it varies how allergic allergic is not really the right word, but how sensitive they are to gluten. But for Sydney and most other people with celiac, the tiniest crumb will set off an allergic reaction or the reaction that causes the immune system response. That's amazing. Who would think Stacey Simms 18:27 so what were your five meals? Do you remember? I can imagine you'd ever forget. Anne Campanella 18:32 Oh my gosh. Well, it's funny because we branched out since Oh, yeah. But spaghetti. Spaghetti was probably three of them. is sad to say. And when Sydney started going to school, because I'm not a cook, I would just make a huge pot of spaghetti and feed her meals of spaghetti like for lunch and it was so sad, poor child. That spaghetti was one chicken pox. pie that was like my big thing but I would make two of them at once and I could find gluten free pot pie crust for the bottom. And then I would just dump chicken and broth and vegetables into the pot pie. So it's it was not like this fantastically tasting, good tasting potpie but it was decent and Sidney loved it because she didn't know any better. And then I would roll out a crust made from like rice flour. So that was one and what else hamburgers. I could get Joel to cook hamburgers on the grill and I would just steam up some vegetables. I did have a chicken and rice meal. That was my mom's and I just changed a few of the ingredients that that's probably that about covers it maybe scrambled eggs. That was another really...
/episode/index/show/diabetesconnections/id/15719627
info_outline
Bolus Maximus - Diabetic Men Talk Tough Stuff
08/18/2020
Bolus Maximus - Diabetic Men Talk Tough Stuff
Have you heard of Bolus Maximus? Behind that great name are two men with type 1 looking to bring new resources to the community talk about the tough stuff. This week, Stacey talks to Brandon Denson and Matt Tarro. They share their stories and what they hope to achieve with In Tell Me Something Good, we have a few artists in our audience and some good news for the podcast. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (Beta) Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, the name caught my attention, but it's the people behind Bolus Maximus, who are looking to bring new resources and talk about the tough stuff. Brandon Denson 0:37 Type 1 diabetes or the diabetes community in general, is a very, very tight knit community. But there's still a lot of work to be done. One of the main things that is going to separate us is that we're not focused on pulling you out from where you are. We're more focused on coming to get you from where you stand. Stacey Simms 0:58 That's Brandon Denson. And he and Matthew Tarro, the creators of Bolus Maximus shared their stories and what they hope to achieve here in Tell me something good. We have a few artists in our audience. And hey, a big honor for the podcast. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have along. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I have to tell you I'm taping this episode a little bit more in advance than I usually do. Because as you're listening, it's last week, we took my daughter to college, as I'm taping it is this week, and the plan is to take more time than usual. I mean, nothing is usual this year. But as I shared in a previous episode, we're far from this college. This is an 11 hour road trip we normally would have flown but with things being how they We are driving, and we have to stay because every college is doing this a little bit differently. Her college is testing the students upon arrival for sequestered in a hotel. And then when they get their negative COVID test back, they can move in and you have two hours. I think that's the window to move her into the dorm. So I'm kind of thankful she's a sophomore this year. I was so nervous last year when we moved her and not just about she was leaving, but are we gonna have time? Are we gonna do everything right? And what about making up her bed and she didn't need any of that. But you only recognize that in hindsight, so if you haven't moved your freshman college student in yet and you are doing that, as you're listening, some point in the future really will be okay. They really don't need you there. You really don't need to do a lot. My husband did move some of their furniture around. I mean, it was very limited what they could do, he did help with that. So he is the one moving them in this year. I will not be going for that two hour window. But we're all going together. I will report back I'm sure if you follow me on social media. I'll be talking about it as well. I don't have any words of wisdom about schools this year, Benny, who's my son was type one, he is going to start the school year virtually because his whole district is going virtual. And you know, we'll see what happens. I am optimistic that next semester will be in person. But I don't know why I'm optimistic. There's no signs that point anything changing, demonstrably. But I'll keep my fingers crossed. All right, a lot to talk about this week, I reached out to the guys behind Bolus Maximus, because how could you not with a name like that? I saw them on Instagram. I thought What are they doing? And I found out and I'm going to share that with you in just a couple of minutes. And this is an effort that is really much needed in our community and I think these are the guys to get it done. Diabetes Connections is brought to you by One Drop, getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized tester plans plus you get a Bluetooth glucose meter test strips lancets and your own certified diabetes coach. Subscribe today to get test strips For less than $20 a month, delivered right to your door no prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one fake get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the One Drop logo. A couple of weeks ago I attended I guess attended in quotes the virtual friends for life conference. And one of the topics that came up just in the conversation we were having in the equivalent of the hallway, right? We're just talking to other parents and other people with type one diabetes was men with type one and dads have kids with type one. How come there aren't more forums and places for those people to talk amongst themselves. And you know we kind of batted that around for a little while you know guys don't want to talk and you know they keep it to themselves or they want action. They don't want to talk about feelings and we've had the the dads and diabetes podcasters on the show. I think they are a great resource. There's lots of episodes I've done with men, certainly who live with type one, but just a place to like knock issues around and forums to do that. Well, that's what Bolus Maximus is all about. And yes, we will talk about that name and how it came to be. And if you haven't guessed you might be right there several reasons and things behind that name, which was fun to kind of tease out of them. So who's behind that? Well, Brandon Denson is one of the pair here. And Brandon has been on the show before he was diagnosed with type one as a high school senior, and he really wants to play college football. He joined the Michigan State football team. He earned a full scholarship there. He's a walk on and he earned that scholarship to play at Michigan State. He's played professionally and he has also been on American Ninja Warrior. Again, I'll link up our past episode with Brandon. The other half of this pair is Matt Tarro. He was diagnosed with type one in 2002. his sophomore year in high school and he will share that story in the interview. He works at tandem diabetes and one of the things that comes up when you Google Matt of like Google, everybody I talked to because I'm very nosy. One of the things that comes up is this column he wrote for beyond type one called the guy's guide to type 1 diabetes. And I will link that up as well, because as I said, There just isn't a lot of stuff. bullous Maximus has weekly discussions, they say talking about the tough stuff. And I should mention, it really isn't just for guys, I know that they're trying to walk this line here. I think they're doing a very good job of it, that these resources are mostly for men. But there are many chats where women are welcome because they really want to hear all perspectives. I will let them explain more. Here's Brandon and Matt and Bolus Maximus, Brandon and Matt, thank you so much for joining me. Welcome to the show. Unknown Speaker 6:41 Thank you. Thanks for having us. Yeah, appreciate it. Stacey. Thanks. Stacey Simms 6:44 Alright, so I've talked to Brandon before, but I haven't met Matt. And before we jump in and talk about Bolus Maximus, which by the way is fantastic. Let me just ask you, Matt, What's your story? Matt Tarro 6:57 Thanks this Yeah, I appreciate that. Thanks again, for for having us on today. So I was born in a small state of Rhode Island, East Coast. And I've migrated out to the west coast now after years of working in digital advertising. I started it, you know, Time Warner and ended at Snapchat. So wow spent, I spent a career in digital marketing and advertising. And now I work at Tandem in San Diego. So I've been out here for the last 10 months and for the release of control IQ. And so it's been awesome to be here and working in that space now, doing something that I truly enjoy. And we'd like to do. When were you diagnosed with type one I was diagnosed is a sophomore in high school. And 2002 and I was 16 years old, living in Rhode Island, going to high school, swimming, you know, doing the normal stuff that I was. I played a couple sports growing up but I really just focused on swimming. So while I was playing When I was diagnosed during that season, Stacey Simms 8:02 we're able to turn around and get back into the season. Matt Tarro 8:05 Yeah, yeah. And that was something that was Yeah, that was really cool. There's another guy who was diabetic on the team. So I felt kind of comfortable getting back in there. And 16 Stacey Simms 8:13 were you driving? Did you do remember wondering if that kind of stuff was going to continue for you? I mean, it sounds like you went right back to things pretty easily. Matt Tarro 8:23 Yeah, I did. Mostly because I felt like there was a need to do it. I think the delivery when I was diagnosed from my parents and the educators was that this is your disease. You can choose to live with it or not. I did tune out I mean, I don't want to sound like oh, yeah, took care of that. It was really easy. But we never really easy it just really no, true. So I came from medical family and my background. I wasn't going to go to medical school. But my background, you know, in my family's background was was medicine. So For me, I heard that every day at the dinner table it was always around my house. And it wasn't specifically diabetes, but it made it easier to deal with such a difficult thing. And yeah, then I then I started getting used to it. Stacey Simms 9:16 Yeah, and Brandon, we as I said, we talked we talked for an episode a while back and you were diagnosed as a high school senior. Gosh, and then you but you went on to play football in college and then professionally, how are you doing these days? How are you keeping busy during an active physically during a time when we're all supposed to pretty much be staying in and staying by yourself? Yeah, it's been Brandon Denson 9:39 it's definitely been challenging. You know, it's been a while since the last time we talked a lot of things have changed. The good worse in for better, but, but I would say just with staying active and walking a lot in always on the blades. You know the blades is I find that you know my for cardio versus running or anything crazy like that. So that's kind of homestead stand fit trying to Anyway, Stacey Simms 10:09 when did you start? I'm assuming this is rollerblades. Pardon me. I'm an old lady. When did you start with rollerblades? Brandon Denson 10:15 Man I started rollerblading. I actually let it people don't know I actually used to play roller hockey going on my brother. But by far you know I'm from if somebody Michigan but Metro Detroit, Detroit is not that far from where I grew up at. And I was a huge Red Wings fan. So Steve Iser, me and Chris, I'll tell you, all of those guys, I grew up watching those guys. I never played ice hockey. But I have I definitely have a passion for hockey. And also definitely roller hockey for sure. Unknown Speaker 10:50 Alright, so tell me what Bolus Maximus is all about. Let's start before we get to the great name. What's the need here? And Matt, let me ask you what what did you two ideas defi as the need that you could fill, Matt Tarro 11:02 when Brandon and I started to connect, it was through Instagram. And we started to communicate because I was volunteering for a nonprofit. And I didn't see what I wanted. So I didn't see somebody that I thought I should be working with President. And so I felt like I had to go out and find that person. And that search led me to Brandon Denson, because he displayed himself in such a way that it was easy for me to go, yeah, him, him and I will get along, put me in a room with that guy. And because of our personality, we're extremely outgoing. We're very charismatic, personable, and just happy individuals. It doesn't mean we don't have bad days. We learned about those bad days from each other through the conversations we started to have. And so this whole relationship really grew. From 2018 the first time we met after, you know, just kind of here in there, the diabetes space to like how many people have you met in person randomly? You like, Oh, yeah, I remember you from so so I wasn't that involved. So I never really had a chance to meet Brandon. And then by the time I did get involved, he was like the person that had to meet. And I'm glad I did. Unknown Speaker 12:23 Yeah. So then Brandon, let me ask you. So what is the need, then that you guys are getting together? You're helping each other you got good days together bad days together? What what needs are you looking to fill here? Brandon Denson 12:36 So So I think it's something as simple as if we thought that we needed that. Why wouldn't other people need that as well? Why wouldn't they need somebody to talk to? Why would they need somebody to engage with why would they need somebody to help them do their highs and lows and lift them up? We all go through the same thing we live with live with diabetes is stressful. It's a 200 to 365 24 hour a day job seven days a week. And you know, it can be very, very tough. Like, I know your son has it and I'm sure you know, you're his rock, you know, at the end of the day when he needs you or you need him, but you know, to have a community we wanted to establish in the community that we're here for everyone living with with diabetes, obviously, yes, a focus, we'd like to focus or we begin to get our focus with males. But you know, as a male there not a lot of knows that come on in this space, and I'm just gonna be completely transparent about it. The women are winning. They're winning down, you know, because they're, they're not, they're not and I wouldn't even say from a male perspective, a shame to show it. I think that men sometimes they wear this badge of honor that they don't have, you know, they don't have to let this worn out. It's okay to let that worn out and talk about the ups and downs that you're having living with diabetes. It's nothing to be ashamed about. You know what I mean? Doesn't matter if you're black, if you're white. If you're old. If you're young, none of those things matter, we just want to give a safe space. So people feel comfortable. And that's what we're starting. But we'll be working on a lot more things than just kind of bridging that gap in the community to cover everyone. Unknown Speaker 14:13 Tell me a little bit about what you're trying to do, because this is such a huge challenge. As we've said, Men don't really like to talk about stuff to begin with, which is why there aren't more resources like this, it seems What are you doing to kind of help them Matt Tarro 14:30 showing up in their space and being loud about not being quiet? And I think it's important especially now with what's happening in the United States and around the world to use your voice where you see fit and this for Brandon and eyes, but after we first met, really Hey, man, we we just communicate better with each other than we have with other people. So I was driving around I had you taken some road trips around the western part of the United States, and I was on the road for like four or 567 hours at a time. And I would use chunks of those time to call Brandon. And then we would have conversations while he was on the East Coast after work, and I would talk his ear off while I was like, I need somebody to help me stay awake. But like, we got a lot of stuff out and talked about a lot of different things where we, we understood how similar the need was, regardless of where we came from, how we were raised, who our friends were, or what we were taught, the needs still remains its support, and you need someone to show up and tell you that they're there for you to to help you. Stacey Simms 15:44 So what do you actually what are you doing with bullets? backspace. You mentioned some zoom calls. You mentioned some other ways you're trying to get guys to kind of reach out because right now nobody's doing anything in person, but you're able to communicate. Cool. Matt Tarro 15:58 Yeah, yeah. I mean, I So we've started with zoom calls, because obviously that's, you know, everybody's family. And that's how everyone's communicating. And we saw it as the easiest way for all of us to get together. And then we've been using Instagram and Facebook as a platform to start to advertise. And we've really been feeling it out. But that we knew, like I said, what we were talking about as far as a knee A while ago, sorry, my dog is encroaching on my space. Unknown Speaker 16:30 That's what zoom is all about. I wish we could show that on the podcast. Matt Tarro 16:36 He He's Yeah, he's usually with me. But so. So the, the idea was, you know, let's, let's start with zoom calls and put people in a position just to open up and see how that goes. And to say it's been rewarding as someone who knew that that was a need. And they're like, hey, let's try this. It's been great to see the reception. So we're going to start There, but our idea is to is to go and travel and find people in places that maybe they thought they, they had nobody coming to see them. So small communities, and then underserved communities, most importantly, the places that other people haven't been. And for whatever reason, won't go. So we feel like that need is a lot larger than just the male communities need to be addressed. So if we start with men, and we can address them, then I think we'll be able to, to start to maneuver our way around it to some different communities and make an impact Stacey Simms 17:40 and branch it you've already had some experience with this, I would assume just because when you've been at conferences in the past, you know, people want to talk to you about playing football. And I'm sure you've been looked at as a role model. What are a lot of the things that that guys whether they're teenagers or adults with type one, I'm curious, like, what do they ask you about, you know, what are they curious about? Brandon Denson 18:00 Um, to be honest, I like to, uh, after I speak or anything like that, or engage with anybody, anybody or share my story, I just say, you know, all bets are on, you can ask me about school, you can ask me about football, you didn't ask me about culturally how I came up with diabetes, you know, I don't really hold back from anything. And you know, I think when you when you kind of say like nothing is off limits, and that's kind of when the teenagers get DAX, and questions. Some of them raised some questions about girls or what should I do? When I play sports? What should I do on my pump? Do you wear your palm? You know, what teams have...
/episode/index/show/diabetesconnections/id/15642509
info_outline
The Baby-Sitters Club & Type 1 Diabetes in Media
08/11/2020
The Baby-Sitters Club & Type 1 Diabetes in Media
The Baby-Sitters Club comes to Netflix! The beloved series features a character who lives with type 1 diabetes. How did the show do portraying life for a 7th grader with T1D? We talk to New York Times Bestselling author and winner of the National Book Award Robin Benway. Robin loved the books as a child and was diagnosed with type 1 as an adult. Also this week, Mike Suarez turned his son’s story into an adorable picture book called In Tell Me Something Good – she had a huge goal for the JDRF rides this year – of course so much had to be cancelled this year but her story took a wonderful turn.. on and off the bike. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first pre mixed autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, it's all about books and a TV show that's based on books. We're talking about the Baby-Sitters Club with a New York Times bestselling author who loved the series as a child and was diagnosed with type one as an adult. Robin Benway 0:43 Oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was thinking about Stacey when I did start to watch it. I thought it was nearly perfect. Stacey Simms 0:54 Robin Benway is the winner of the National Book Award when we talk about Stacey and the babies sitters club, what we liked what we didn't, and about diabetes in media. Plus a dad turns his toddler story into an adorable picture book about type one. in Tell me something good. She had a huge goal for the JDRF rides this year, of course, so much had to be cancelled and changed. But this woman's story took a wonderful turn on and off the bike. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, gosh, ages ago now he was almost two and in December it will be 14 years. Yeah, he's 15 and a half 15. And more than that, I don't even know anymore. My husband lives with type two diabetes. I do not have diabetes, but I have a background in broadcasting and that is how you get the podcast which we've been doing now. for more than five years, and I have been wanting to talk about the Baby-Sitters Club for a long time, I mean, we have talked about it because many guests over the years have said that it was very influential to them, either. They read it and really were touched by Stacey's story, the character who lives with type one, or somebody else read it and diagnose them because of it. That happened at least once to one of my guests. It's really incredible to think about these books, and the impact they've had on our community. So when I saw column in Elle magazine recently, about the Netflix adaptation, I really wanted to talk to Robin Benway, the author, I knew she'd be fun to talk to just by her writing voice in the magazine, and she really was and Robin also had some unique insight about the books and about the adaptation, and I was really excited to talk to her. We also talked about diabetes in other media, you know, I think a lot of us cringe when we know there's going to be a depiction of diabetes and a show or they mentioned insulin and we Oh, we know what's coming. So it was fun to talk to Robin about that. And to kind of spotlight some good stuff that's actually out there. All right, I'm going to talk about my reaction in more depth to Baby-Sitters Club in a little bit of a review, but I'm going to do that later on. Because this is a longer episode. We've got two interviews, we've got Robin. And I also spoke to a dad who wrote a picture book rhyming kids book for about his little boy, and it's called year one with type one, and that is with Mike Suarez. So that's coming up in just a bit but first, diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop was really impressed at how much they get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required there. Beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes, Connections comm and click on the One Drop logo. My guest this week is a National Book Award winner and a New York Times best selling author. She wrote a column about the Baby-Sitters Club and her reaction to it in Elle magazine. That's what caught my eye. I reached out and said, Would you talk to us but to come on the show? She said sure. And we had a great conversation. Now she grew up with a father who lived with Type One Diabetes, but she herself was not diagnosed until she was an adult. So her perspective on the Baby-Sitters Club, which she loved, as you'll hear as a kid was very different because she wasn't relating to the type one aspect about it right away. I'm also curious to know what you thought of the Baby-Sitters Club. I'm going to be putting more about this in the Facebook group. We've talked about it a little bit, but we'll put more posts in there and get your take. And as I said earlier, I'm going to put a little bit more of my review, although you'll you'll hear much of it in the interview. But a little bit more later on. Here is my talk with Robin Benway. Robin, thank you so much for jumping on to talk about this. I really appreciate it. It's I'm looking forward to talking with you. Yeah, same here. Thank you so much for having me. All right before we jump into the Baby-Sitters Club, and I have a lot to talk about with that. Let me ask you just the basics. You were diagnosed as a young adult, right you were in your in your mid 20s? Robin Benway 5:28 Yes, I was 26 it was July of 2003. I was diagnosed I was diagnosed with celiac disease at the same time I was having really low iron problems I was having anemia so they started doing a lot of bloodwork just to find out what was going on and started noticing that I had elevated blood sugar levels. And my father, who was my biological father was also a type one diabetic. So once they saw those blood sugar levels being elevated, they started to put things together pretty quickly. And so I in a, you know, a very strange way felt very lucky that I was diagnosed that way that it didn't progress to the point where I had to be hospitalized or my blood sugar's were, you know, four or five 600 or something like that, that I was diagnosed sort of accidentally and was able to catch it pretty early and could start, you know, meeting with an endocrinologist and started taking insulin pretty soon after that. So there was no mistaking at that age, oh, maybe it's type two, maybe it's something else because of your father, they pretty much went right there. At first, they were like, maybe it's type two. There was a lot of I think, you know, this was 17 years ago. So I think now, the way that people are diagnosing type one and people in their 20s and 30s is very different than it was 17 years ago. I think that was when people were just starting to see that, at least based on my experience and the responses that I was getting from doctors at the time. You know, I had grown up knowing that my dad was diabetic, but in our family, we had always sort of been under the impression that once you hit 12 or 13 years old, you're sort of out of the woods of that, you know, I think a lot of they used to call juvenile demise you know, because they were diagnosis of young. So I think it was a real shock because I had always thought, okay, I'm out of the woods. I'm fine. And that wasn't the case. But they definitely did think it was type two. They started me on oral medications at first Metformin, but nothing worked. And I remember I still remember the first time I took insulin, it was just like, oh, that was the problem. You know, that's what I need because my blood sugar's just came down to right where they should be. So, you know, it was a little disheartening knowing that I was going to have to go on insulin, but at the same time, that relief of knowing that now here's the drug that works was it balanced it out? Stacey Simms 7:36 Do you remember I've been told this by other adults that I've talked to that what that first dose of insulin feels like, Do you remember that? Robin Benway 7:44 I do. Remember, I was staying at my mom's house. I was living alone at the time and I thought I don't want to be alone when I take my first dose of insulin just in case. And I remember it dropped. My blood sugar's a little lower. They were like maybe in the mid 60s, and I just remember, I didn't feel shaky but I just remember feeling less. It's that feeling of a sugar rush basically, you know when your blood sugars are high I for me personally, I definitely feel a little agitated, a little edgy, you know a little bit more, I don't know Piper's the word but just a little fuzzier. And I just remember that feeling going away. And I remember also being so terrified of like having to give myself an injection like having to give myself a shot. And I was incredibly amazed at how easy it was and how painless it was. I had always imagined that it would just be a torturous experience, you know, mostly because your experience with injections is like vaccinations or inoculations. You know, it's Earth flu shot. It's a very different experience. Give yourself a shot of insulin. And I remember feeling that relief also of Oh, I can do this. Okay, this is something that I can do. Wow. Yeah. So Stacey Simms 8:50 the article that I'd mentioned, you start out by talking about this high spot in your career, the National Book Awards Gala and then the reality of being an adult with type one, which is go to the bathroom, I get up your formal gown, you know, giving an injection. And, you know, certainly a great way to start the article. But I'm curious, do you share your diabetes experiences with your friends and family? I mean, not everybody has to be giving themselves injections at the table. Right? I know. I'm sure you're not hiding things. I don't mean to imply that. Oh, as a mom, that was the first thing I thought of was, oh, my goodness in the bathroom. She okay. Yeah. Robin Benway 9:29 You know, I obviously all of my friends and family know about it. I'm not someone who would ever conceal that part of me. It's not something that I ever feel ashamed of, or feel like I need to keep secret. That's certainly not it at all. I think. For me, it's more about I'm very conscientious of other people's reactions to blood and to syringes or needles, and I just don't want to ever make someone I definitely have known people and I've heard of people who just give themselves an injection right at the table, you know, or will check their blood sugar under the table. And for me, I'm just not comfortable. That just in terms of making other people uncomfortable, but also sometimes things go wrong, you know, like, sometimes, you know, there's a little bit more blood than you thought there would be or you hit a blood vessel when you're injecting yourself with insulin. And, you know, sometimes it's just easier to be in, even if it's a public restroom, you know, it's still a confined space. And sometimes just the privacy is sorted out is something that I prefer but in terms of being open, I definitely I talk about it. I do a lot of school visits with my job, you know, writing for young adults and young people, I do a lot of school visits. And I always talk about how I was diagnosed and how that changed the trajectory of my life. And I always say to kids, who here knows somebody with diabetes, and almost every kid raises their hand you know, whether it's type one or type two, it doesn't really matter to me, I just, I know that they can make a connection with what I'm saying and relate it to either themselves or someone that they love in their lives. No doubt. Stacey Simms 10:53 Yeah, I think that's to is the difference between my my personal experience of type 1 diabetes is my 15 year old who has made a career out Have trying to gross out his friends. Yeah, no, since the third grade watch this. Yeah, slightly different experience than a grown woman in Robin Benway 11:09 that dress. You know? It's expensive. You just really don't want to get anything on this. Stacey Simms 11:15 So let's talk about the Baby-Sitters Club. Now I'm a little bit older so my guilty reading pleasure as a kid was worse sweet Valley High then Babysitter's Club, also say, okay, okay. But were you a fan of this as a kid, this was something that you read and you look forward to. Robin Benway 11:32 Oh, I cannot even describe to you like how much I love the Baby-Sitters Club. Like, I can just remember going to my local bookstore, you know, the Walden books that was in the mall at the time when there were still Walden books in malls and scanning the shelf and just looking for the new one and either being so excited when there was a new one or so disappointed when, you know, they came out every month and you know, on day 30 I'd be like, Where's the next one you know, and sharing with your friends or your Got the new super special, so then they would loan it to you and super specials were bad. But yes, I mean, just when I think about the Baby-Sitters Club, because I've also talked a lot about, you know, what is sort of my formative reading now as a writer, like, what did I read as a child and a young adult that sort of made me a writer? I think the two things about the Baby-Sitters Club is that they were so funny. And I think I learned how to write humor and really good dialogue from those books. I think you can't really teach how to write humor or write something funny, but I think if you can see it, you can see how either rapid fire dialogue or really smart responses or interrupting each other like, that was formative for me as a writer was seeing how they did that. And then also just as like a 11 1213 year old girl, you know, that is where, and I'm sure a lot of women and girls have had this experience, your friendships just kind of implode. And nobody really knows why. But suddenly, your best friend in sixth grade is your biggest enemy in seventh grade. And the factions are changing all the time and who's friends with who and who's not friends with who and who Did what to whom it's traumatic, it's a really difficult experience. It's a big part of growing up, but it's still difficult. And the thing with the Baby-Sitters Club was that at the end of the book, they were always friends. So you could see the sort of regeneration of friendship again and again and again. And for me, it was very comforting. You know, when sort of my female friendships were in turmoil, it was so lovely to see these girls work through things and stay friends in the end. So those were, I think the two things that kept me coming back to the book, but a great way to look at it. Stacey Simms 13:29 Yeah, but you as a reader, your type one experience was with your dad. So I imagined Stacey McGill, the character in the book who has type one wasn't somebody who could really relate to that wasn't what you were reading the books at the Robin Benway 13:42 time? Absolutely not. Absolutely not. You know, I actually I shied away from Stacey as a reader. You know, I loved I moved to New York when I was 18 years old. I've always wanted to live in New York. So reading her as a 12 year old I was like, Oh, that's she's a sophisticated city girl. You know, that's how they always portrayed her. She's From New York City, but that was my favorite part of her but there were books where either she was just diagnosed or I think there's a book later in the series where she was hospitalized. And I had a hard time reading those just because at the time my dad's health he had been a diabetic for 30 years at that point, so his health had gone up and down, you know, just the nature of the disease and the nature of treatment at the time as well. It wasn't as advanced as what we have now. So you know, it was scary to see my dad go through that and I, Baby-Sitters Club was my safe place. You know, that was my fun, safe, circular path of Stony Brook Connecticut. I didn't want a hospital or an insulin shot coming into it. So I don't say I didn't like Stacey as a character. I love Stacey as a character but in terms of what she went through, I just I really shied away from that. That wasn't I was much more a Claudia dawn girl. So yeah. Stacey Simms 14:54 How did you approach the Netflix series you've lived with type one now for a while. We all know that they never get it right in In media, I really looked looked at the show. I look very much forward with a lot of trepidation. I was almost afraid to watch it. What was your reaction? Robin Benway 15:09 I mean, I literally had an alert set on Netflix to remind me that the Baby-Sitters Club will be on Friday, July 3, and then I got the notification. I was so excited for it just because I had loved the books. And you know, I don't know any of the creators personally, but I was familiar with their work and their backgrounds. And I had read a lot of articles by that point about how they had approached the material and I just had a really good feeling about it. You know, I just thought that this is possibly in really good hands. And honestly, I wasn't even thinking about it in terms of Stacey and diabetes. I was thinking about it as oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was even thinking about Stacey, so when I did start to watch it. I mean, I thought it was nearly perfect. I thought that they kept the spirit. I love that they kept the girls young, you do feel like you're watching 12 and 13 year old girls, b 12 and 13 year old girls, you know, and all of the struggles that go into that, but all of their I don't say immaturity, but just that feeling of they're still young, they're still figuring things out. They're not 17 years old in high school, you know, they're still little girls and I thought that was really important what the books were and to the show, and I just thought the way they modernized the material was perfect. You know, they talk about Claudius grandmother being in bands and our you know, Claudia is Japanese American and talk about her grandmother being advanced in our when she was young. And you know, at one point Marianne is babysitting for a kid who's transgender and that would have never been in the past 30 years ago, and I just thought they did a beautiful job of modernizing not only the characters, but the storylines while still staying true to what the spirit of the books was. They did Stacey Simms 16:45 a nice job with that too. And they did this many times where they would put something in like that, you know, the child who was transgender, but the storyline wasn't so much about that child. It was the babysitter character's reaction to it and reflection of it....
/episode/index/show/diabetesconnections/id/15567542