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.
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Stacey to Lilly Diabetes: "Why not be a hero?"
03/31/2020
Stacey to Lilly Diabetes: "Why not be a hero?"
In mid-March, the folks at Eli Lilly held a conference call for diabetes writers, bloggers, and podcasters. The call was to talk about Lilly's participation in the new Part D Senior Savings Model, as well as general updates about our insulin affordability programs. After listening to some of the remarks, Stacey asked about the price of insulin and suggested a bold way forward. You can listen to what she asked, and the response here. Transcript is below. Please note: there were many other advocates on the call - this excerpt only features Stacey's question but she was not the only person pushing for change. In particular, Amy Tenderich of DiabetesMine was also vocal about lowering the price of insulin. Links to insulin assistance programs: ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Transcription: Stacey Simms 0:06 Hey everybody, welcome to diabetes connections. Although this isn't really going to be show today. This episode is more like an audio excerpt. I'm Stacey Simms, of course, and we will have a regular episode with all of our usual segments dropping as soon as later today, or more likely tomorrow. I debated putting this one out. The production quality isn't exactly as it always is, because I'm doing a quick turnaround here. And it isn't usually how we do things, but I think it's important. So here's what happened on March 16, the folks at Eli Lilly held a conference call for diabetes writers and bloggers and podcasters. The press release said during the call, you'll hear more details from Andy Vicari a leader on the Lilly diabetes insulin team about our participation in the new part D senior savings model as well as general updates about our insulin affordability program. grams. That was the PR quote, these calls are rarely groundbreaking. They do them sometimes they'll put out a press release that says largely the same thing. But they do give you the chance to speak directly to the people who help mold the policy. And I do try to join when I can. I am so glad I did this time. The PR team welcomed us and told us that in addition to the planned remarks, Mr. Vicari would speak to the company's response to the Covid 19 situation. It became pretty clear though, that this really just meant he was going to go through the already published ways to get coupons and use the Lilly call center, you know, that kind of thing, which I will link up in the show notes along with other ways to try to get a break on insulin prices from all the manufacturers. If you're a regular listener, frankly, it is the usual stuff as far as I know as of this date, which is March 30th 2020. Nothing substantially new has been announced. It's important to note and you'll understand why when you hear the audio From the call that I'm going to play, when you hear my question, there have been no widespread reports of people not being able to get insulin. There isn't a supply problem. I asked a little bit about that, because I had just been contacted by a woman whose local pharmacy wasn't carrying what she needed. But that was a local situation, and as far as I know, has since been resolved. When it became clear that they weren't really doing anything new for what is an unprecedented world situation, a world health crisis, I decided to ask another question. I asked the folks at Lilly, why not? Why not do something very bold, very different and really show us what they stand for. And I want to play you that Please come back around at the end for an important announcement about what you can do to make your voice heard on this issue. Here is the unedited version of that portion of the call. The gentlemen answering my question is, as I said earlier, Andy Viacari, senior director, diabetes US insulin brand leader for Lilly: (Call begins) All right, I'm going to ask this question and I understand it might not be a very popular one. But, again, looking ahead to as you said, there will be things in place for people who are, you know, losing their jobs who are poverty level, that sort of thing. In a time of really what is very much uncertainty, understanding that people with diabetes cannot live without insulin, as you know, why not be a hero in the space and say right now, that Lily will cut the price of insulin to one level to $35 to $25. Why not let people fill prescriptions for whatever they are written for from their physician for a price that while would obviously be very dramatic, very different, would help people around this country feel better about the one thing that they are? I can't, I can't. I'm not exaggerating this, you know what we are in this community all of the people on this call one thing that people are devastatingly worried about, there are already reports of people who don't have insulin in their pharmacy. They're very, very isolated. I have no idea what brand they are. But this is something that's on the minds of everybody was type one diabetes and many people with other types. Why not consider something that dramatic, even if it's temporary? Andy Vicari 4:32 Yeah, appreciate the passion and and some of the frustration in the question, I think it's important to acknowledge that, you know, what I can say from a human log standpoint. You know, similar to any other time, if we cut that price, could that disrupt the supply through our other supply channel partners that certainly we have contracts in place with them for a certain price so it would go beyond our ability just to cut that price. We would be having to negotiate with them. So certainly something that I think is feedback for us. I like the way you framed it. Why not? Maybe not the hero I think yourself and the folks that have any type of diabetes is the hero in this case, but we can play a significant role. What I what I will say is, we are constantly from a leadership standpoint, it's not a an overstatement to say, Mike Mason in our executive committee is constantly looking at for things we can and should be doing this time. So while I can't sit here and say it is something that has been considered and being planned, I think these conversations are further fuel for those types of interventions at a at a at an enterprise level. What could we be doing around this space? And it's important that I'll make sure that I continue to come back to my leadership, as we close this call and have those conversations What else could we be more vocal about? What else could we come out and announce to help people in this time and it may have all Just given the circumstances with the country and what's happening. So what what I can't promise you is that there'll be an immediate reaction. But what I can say is we're always looking at these things. And the steps that we've taken, the quickest way for us to do that would be with our authorized generics. Again, we have similar contracts the same contracts in place with our, with our wholesalers and with our pbms and payers, so we would have to be renegotiating with them, and they'd have to be okay with that. Now, you could argue that they they can and should be, it would be very difficult for them to say anything other than that's a good idea, but I can't comment for others in the supply chain. I know that's perhaps not the exact answer that you'd like but it's a it's a real answer on we are always considering these other options. And by cutting our price just automatically, we would put at risk those folks that are stable on our products with just not getting covered by the P ends and payers that have us on today. Stacey Simms 7:00 I do appreciate the answer. I just think that - just a bit of an editorial statement, you know, a crisis is a time to define what your company is all about and what an opportunity, I really hope you guys consider that and let the pbms and the others say no, I mean, let's give them the chance to, to not step up to the plate. And let's see what happens. (end of call) But do you think will Lily take any bold steps? I know most of you are skeptical, but you never know. And as I said that was an unedited portion of the call. There were other diabetes bloggers and writers on the call asking their own questions that hat tip to Amy Tenderich of diabetes mine for seconding. My thought and backing me up and and pushing ahead on that too. But what can you do? Is there anything right now to take action on Patients for affordable drugs. A group we've talked to here on the show before, has put out a call for all three insulin manufacturers to lower their prices right now, in response to this health crisis. There's a letter it is being released on Tuesday, March 31. I've signed it virtually, of course, and I would urge you to check it out and sign it as well. I'll link it up in the show notes and I'll share it on social media once it is live. Let's keep pushing on this issue. It is in times like these, that companies truly show us what they're about that big change can happen. And as Amy said on the call, that it's a time for disruption. It The time is ripe. So make your voice heard. Let's do what we can. I know a lot of you already, as I said are not optimistic, but we cannot give up. Thank you for tuning in. Regular episodes are coming your way the next one will be out as soon as tomorrow. I'm Stacey Simms. Subscribe to the show on any free podcast app so you don't miss out or just come back the way you found this audio excerpt. Thanks again for joining me Unknown Speaker 9:09 Diabetes Connections is a production of Stacey Simms media. All Rights Reserved all wrongs avenged. Transcribed by https://otter.ai
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Stuck At Home? Share Your Voice: A Community-Sourced Episode
03/25/2020
Stuck At Home? Share Your Voice: A Community-Sourced Episode
We asked and you answered! Listeners sent in their audio to let us know what's going on in the diabetes community right now. It's a tough and stressful time, but you're not alone. Listen to stories and thoughts from people from the US, Saudi Arabia(!) and of all different ages. Truly a time for Diabetes Connections. Want to send in your audio? ----- 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 five 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. Unknown Speaker 0:20 This is diabetes connections with Stacey Sims. Stacey Simms 0:26 How is everybody doing? I'm not exactly sure how to even start these episodes anymore. We're not really doing regular episodes, full episodes of Diabetes Connections. But I didn't want to wait until I'm doing a full episode or a regular episode to let you hear what is in this one. So hi, I'm your host Stacey Simms. You know that and just like probably the vast majority of you almost everybody listening. I'm home. I'm very, very grateful to be home with my family. My daughter came home from college and you know, my son's at home. school my husband often works at home. In fact, he almost always works from home unless he is traveling for business. So he's either on the road or in the house. And I'm so grateful that he hadn't been traveling a lot this year already. And you know, we're very fortunate that he can work from home. So what have we been doing? Well, I will share with you I may have mentioned this on a previous episode, we moved recently, just across town, not the best timing because I do have a house to sell now, but we will be fine. We will figure that out. But in the meantime we have a house just set up we have lots of things to unpack. We have lots to keep us busy. We spent yesterday cleaning the house we've been in for about 10 days. And we just did the regular type cleaning that you would do you know dusting laundry, that kind of stuff. I can't say it was a lot of fun, but it was certainly something to do and we realized we were missing a few things including a broom. Apparently our broom did not make it my husband said it was trashed on the way out of the old house. So add broom to the list of things that we are picked up at the grocery store when we had to go out the next time, it's kind of a weird thing to have in your grocery store list. But you know, we don't want to be running around town to different places. I don't even know what's open right now. Got our broom. So my husband who is the much more fastidious cleaner in the family was very happy with that. Our dog is very happy that we're all home. I think like most dogs right now, she's pretty confused as to why the heck everybody is in the house all the time and why we are walking her and living with her. My daughter and I have started doing yoga. we're grabbing a YouTube channel and just trying out some different yoga classes online. I've been taking yoga in person for about a year and a half. But I'm certainly not very good at it. But it's fun to do with my daughter. But our dog is super confused and she's coming in there with us and wondering why we're on the floor and was very concerned. But now she's calmed down. She just kind of lays there with us while we do yoga. And Benny I think like most 15 year old has been keeping really busy on his phone, facetiming all his friends. He was taking these long bike rides. Before everything got shut down, he was by himself. You know, he wasn't with other people. But he's staying home now. And I think that's why. So that's our situation. But I wanted to share more of your situation. And that's what this episode is all about. A few days ago, I put out a call I, you might have seen the graphic, I put it out on social media, and it said, stuck at home, share your voice. And I really wasn't sure if anybody would respond, right? I was trying to make it easy. Just use your phone and tell me what's going on in your world. I did put out a few prompts. I'll talk about that in a moment. But a bunch of people sent in their audio and that's what this episode is going to be just a short episode to share some other voices from the diabetes community. And then in a couple of days, I will be putting out another episode our next full regular episode, whatever I'm calling them these days. I'm excited about that because I was able to talk to just a great guy, a chef with a child with type one he's an adult child is type one now, but he was diagnosed very young and Mark Been a chef his whole career. And we talked about what are we cooking now that we're stuck at home? It was a really fun interview. And I'll be sharing that in just a couple of days. I don't know if you can hear it, but I feel like my voice is not that great right now. It is allergy season here. I mean, it's always terrible. And then, you know, I feel like if I'm coughing or sniffling, gosh, you know, I mean, I'm just home, there's nobody to look at me, give me a nasty look or worry about me, but it really is just just allergies right now. So I apologize if you're hearing any of that in my voice. And if you're going through it, you know exactly what I mean. We're just you know, we're all worried we're all on a bit of an edge. So rather than hear from me the whole time, let's get to the people who sent the audio in. Let me just set this up a little bit. Some of the audio here is great. Some of some of the audio here is as you would expect, you know, people just talking into their phones. There's some homes and some buzzing, that we were not able to take out and that's okay. I was just hoping for some real voices and some real feedback. back. So I do hope you'll listen. None of these clips are especially long, but I think they give really good insight into what we're all going through at the moment. So we are starting with Molly Johannes she was diagnosed 22 years ago. She lives in Massachusetts. I'm smiling because I have met Molly. I've been fortunate enough to be at events with her. She has a blog called hugging the cactus. And I mentioned I had put out some prompts and some questions. One of which was, what is it like knowing that so many people with diabetes are stuck at home right now? Here is Molly answering that question and more. Molly 5:37 And I have to say that I'm finding it a lot more unifying than isolating. What I mean by that is, it's really nice to go on to all of my social media channels. And for the most part, I'm seeing a lot more positivity than negativity. A lot of people are coming up with different ways to stay entertained at home, whether that's going outdoors and enjoying nice weather when it's around. Or if it's staying inside and pursuing hobbies or spending more time as families, it makes a big difference. I think in my mindset just to see something other than the news, you know, certain social media sites, you kind of log on to them. And it's nothing but a barrage of like what's going on in the world right now. And while it is super important to stay informed, it's also important to focus on mental health. And I think that distractions are one way to kind of make sure that mental health is not ignored. It's really nice to just be able to talk to others and know that we're all feeling the same way right now. So with that said, I'd like to share some of the things that I'm doing to stay busy. So when I'm not working, I am lucky enough to work a job remotely. So that's something I'm very grateful for. So when I'm not working, I am watching TV, watching movies, you know, typical things like that, but then I'm also pursuing hobbies that I don't normally have enough time for, whether that's knitting or reading some new books or you know, just spending some more time I'm working on my blog, which is important to me. And I find that a lot of the times Monday through Friday, it's really hard for me to focus on certain aspects of managing my blog. But now that I'm, you know, spending a lot more time at home, I don't have a commute, things like that, it is nice to be able to work on it a little bit more. But besides that, I am just spending time with my dog making sure that I'm connecting with my friends, you know, all of my group chats, we're just kind of checking in with each other on a daily basis. And I'm thinking of doing a couple of other things to really just promote the feeling of togetherness. So with some of my friend groups, that's probably going to be a couple of virtual sleep overs that we've talked about. We're discussing certain movies that like we can watch together as a group. So that would be really fun. But I'm also thinking for the diabetes community. Like it might be really cool to do a virtual meetup slash Hangout, and I don't know I think I'm gonna look into that and hopefully come up with some dates that might work for people get a whole bunch of people on camera and maybe we can just get to know one another and play games you know, just things that will keep us going. That will Keep conversations going and reassure people that they're not alone right now. That's the big message that I think it's important to bear in mind. So yeah, with that said, Everyone, just stay healthy be well and don't forget to take care of yourselves and keep mental health a priority. Stacey Simms 8:16 Thank you so much, Molly. It is great to hear from you. I really appreciate it. Okay, next is Doug. He is from Florida. He was diagnosed when he was 15 years old. He says he's 27 years into it. Now. He is currently finishing his dissertation he sent in his audio and this you'll understand why I'm saying this one. You hear him on March 17, which was the day of the Florida primary. So he talked a little bit about that. I did not include it all because it was very important to that date, but that's what he's talking about voting by mail. So thank you, Doug. And here's what he had to say. Doug 8:52 I am doing fine. It just so happens that I am a bit of a socially awkward introvert Bert, and the kind of self isolation and social distancing policies that have been recommended by the Centers for Disease Control and Prevention. These are things that come quite naturally to me. I don't spend a lot of time in crowded environments and I'm not a touchy feely person. I hope you all will continue to stay safe, wash your hands, don't touch your face or other people in the future. And consider using some social distancing practices in your ordinary life outside of this type of pandemic situation. For example, mail your vote, mail your ballots, and I hope everyone out there is taking care of themselves. Stacey Simms 9:53 The next bit of audio came from Saudi Arabia. I was so surprised and really Just pleased to get this. So Sarah, who lives in Riyadh city, thank you so much for sending it in. She was diagnosed in 2004. And she makes a really good point about how everything around us seems to have changed except for diabetes, Sarah 10:15 to all type one D nation. I'm so happy today that everyone can hear me through this podcast. I'm sada. I have been living with Type One Diabetes since 2004. And from Saudi Arabia, I live in Riyadh city. And currently we're living in a very, extremely and exceptional situation. The whole world literally is facing the same problem of a smooth, tiny virus that changes all our meanings of life. I've been questioning myself the last two days. What are the essential things in our life? What do I really want to do? If I don't have any plan today to go to, to study, or to go to visit, what's add stress to me is living with type one D has no No, no break. So I kept saying to myself, everything has stopped. We stopped education. And we have been learning now not really stopped education. I mean, we have stopped going to schools or universities, but we're learning now through virtually and everything we're doing now is virtual, except diabetes. Nothing has changed about it. Every day. I check my BG every day I monitor my CGM every day or every three days I changed my pump site. So everything has changed except my type one D So I looked at myself and I questioned myself, the way we deal with type one D really shapes big Big, big part of our lives and really need to make sure that the way we approach and you will type windy, really healthy, and guide us toward better control. And I'm so happy to share my thoughts with you guys. I was trying to be as much as continious. Thank you Stacy for this amazing opportunity. And I want to say thank you, everyone, and hope you stay safe and healthy. And thank you very much. Thank you, Sarah. Stacey Simms 12:37 All right. This is Michael and a lot of you regular listeners who are also on Twitter probably know Michael without really knowing him because he's very active on Twitter. He's MTL 613 and when I heard him say that I was really excited because I we've been following each other for a long time now, but of course I've never heard him. He was diagnosed with type one at the age of 420 years. ago, he starts out by answering that question about knowing that the diabetes community is out there right now, even as we feel very much alone. Michael 13:12 And I think that's a very important thing. Generally, for me even without, you know, this whole situation, to know that there are people out there who are going through the same or similar things that you're going through is very important to that you don't feel alone. And it's even more important now with this whole virus situation and, and a lot of people, myself included, are trying to stay home and avoid direct contact with other people. So being able to connect over social media and in different ways and to see that other people are doing the same things you're doing even now is even more important than usual. Maddie 13:54 Hi, my name is Maddy. I'm from Arizona, and I'm 14 years old. Mandy 13:59 Hi I'm Mandy from also Arizona. My daughter was diagnosed about a year and a half ago. So Maddie, what is one good thing about being home right now? I think Maddie: 14:11 one good thing about being home right now is that it's easier to control my height a little bit better, and catch my lows. Because when you're at school, you're mainly focused on your work. And then you always hear though, beeps and alarms and then it freaks everyone out and embarrasses you while me. And so it's sort of nice to have it at home and we can control it and yeah, okay. What is one thing your parents do that actually helps you with diabetes? Well, um, they do of course, everything and I love them so much, but my main thing I guess is that my mom especially makes food that is easier on my blood sugar and dinners that coordinate with like, how Having good blood sugars, and it also helps our family in general because she has celiac. And that's hard to have, as you know, eating too and just keeping family healthy. Mandy 15:13 Yeah, we are watching our carbs a little, a little bit. It helps both of us. Yeah, for sure, was a diabetes or community event canceled that you plan to attend. Tell us about it and what you were looking forward to. Unknown Speaker 15:27 So one event that was cancelled was the jdrf walk. And I was diagnosed a year and a half ago. And one of the first things we did was go to the JRF talk. And it was just really nice to see that there are so many other people that you know, we're going through the same things as you and that I always love to see and I made a lot of friends and camp diabetes camp has really helped that and so I would be really missing out on seeing more of that, I guess. Unknown Speaker 15:56 Yeah, but it hasn't been canceled, right? It's just it's a Virtual walk now. Unknown Speaker 16:01 Yeah. So it was still having virtual walk and of course will still Unknown Speaker 16:05 attend, Unknown Speaker 16:06 but it's just different than, you know Unknown Speaker 16:08 in person and we're waiting to hear about camp or keeping our fingers crossed cross cross capsule on. We'll see that was one of my favorite ever things and Unknown Speaker 16:20 of course when you're newly diagnosed it's you get a first step in but it was just one of my amazing most amazing things that have ever experienced. So Absolutely. Stacey Simms 16:32 Okay, thank you. Big thanks to Maddie and Mandy, I appreciate you sending that in. I am thrilled to hear that you are still cooking healthy and doing what you need to do. I'll be honest with you. We have a talk in my house the other day about eating and it was basically about how well we don't have a house full of junk food. But how we're not going to police each other because there's enough stress right now and if somebody wants to eat a big cheese knows, you can go ahead and eat a bag of Cheetos. I will say that Benny is probably eating the best out of all of us right now. He has some wrestling goals that he is still keeping an eye on and he's doing great. But the rest of us might be a little bit on the track to game the unknown about the freshman 15. But the quarantine with what goes with that. quarantine? 15? I don't know. I'll keep you posted on that. Big thanks to everybody who sent in their audio. I know that's not easy to do. You know, even if you're bored, and you think, Oh, this is gonna be a way to pass the time. It's still hard to open up your phone and press record and then just talk and share your thoughts and then hit send. You know, I get butterflies every time I do a podcast episode. So I can't imagine what it's like for everybody just kind of talking and sending their audio in big, big, big thank you. If you'd like to do this again, let me know I'll put out some different prompts. Because I'm so thrilled to always hear more stories in the diabetes community. Everybody's story deserves to be told. Everybody has something to say we can all learn from your experiences. So stuck at home, share your story. We'll keep doing this if you'd like. I really enjoy hearing from you. You can refer back to the original blog post for how to do this. It really is as easy as opening the voice memo app on your phone. Every phone has something like this, recording something quick and sending it in. As you listen. I know you've heard some different backgrounds there it is better to go to a quiet background if you possibly can. some suggestions, a closet is great. Your car is a great little studio, a bathroom, you know any place in your house that is kind of small and quiet. But we will take as you here, we will take what we get because to me the message is so much more important. And yeah, I cleaned all those up. I can edit those out and things like that. And john Buchanan, of course, my editor really does the magic there. So we want to hear from you. Maybe it's even just an activity With the kids for a few minutes, thank you so much for joining me for listening regular episodes different episodes more Facebook Lives Who the heck knows what we're going to do is we're all stuck here at home. But thanks for sharing your story. I'm Stacey Simms, and I'll see you back here for our next episode. Benny 19:20 Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
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Pediatric Endocrinologist Dr. Mark Vanderwel Answers Your Questions About T1D & Covid19
03/24/2020
Pediatric Endocrinologist Dr. Mark Vanderwel Answers Your Questions About T1D & Covid19
Atrium Health doctor Mark Vanderwel answers questions on the minds of many parents these days. We will be adding a transcription later today. Quick turn around on this episode! If you saw the original Facebook live, skip ahead 17 minutes - it dropped out after some audio issues but Stacey & Mark picked it back up again, off of FB. You can ----- 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 by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:19 This is diabetes connections with Stacey Sims. Stacey Simms 0:24 Hey everybody, welcome to another episode of the show. So glad to have you here. I hope these episodes are helping. Today we are talking with a pediatric endocrinologist starting off by talking about Covid 19, of course, and things that people with diabetes specifically type one needs to keep in mind but then going down the line of listener questions things that my local Facebook group chimed in with things that the diabetes connections group chimed in with. Because if you're not seeing your endocrinologist for longer than expected, which is the case for a lot of us kids and adults, what should you You'll be doing and that's a lot of what we talked about what to do in between how to make sure that you are taking care of what you need to take care of some things you might not have thought about. And just a great chat with Dr. Mark Vanderwel, this was originally done as a Facebook Live Alright, that's only half the truth. This was originally done as a stream yard which is a an audio and video hosting system hosted Facebook Live, which crapped out halfway through and then mark and I jumped onto zoom and record it that way. So the whole video I kind of stitched it together. The whole video is up on YouTube, on diabetes connections there. It is also on our Facebook page. And here is the audio. That's what we're running is the audio of the initial Facebook Live and then everything that you didn't hear. So if you watch the Facebook Live already, the new stuff is about 17 minutes in from the beginning of the interview. If you want to skip ahead, I'm not coming back at the end of the interview. I do want to say, though, that I appreciate all of the messages I'm getting about, you know, putting out episodes. Look, we're all looking for things to do at our homes. We're all looking for good, reliable information. I am hoping to do more episodes like this more zoom Facebook stuff. So let me know what you'd like to hear. I've also been collecting audio from you from people in the audience. And I'm going to be releasing that episode and kind of figuring out how to use that great audio people just keep me posted on what's happening in their homes and what's on their minds. So I'm not really sticking to a schedule. And I guess what I'm trying to say is, I'm sorry, if you were expecting every episode on Tuesday, and sometimes on Thursdays like we normally do, but I don't know about you. I've already lost all track of days of the week. So we're just gonna put out episodes when they're ready to go. And if you want to still listen on Tuesdays, that's awesome. If you want to let me know that that is or isn't working for you. That's great, too. I just think we all need to be here for each other in these wild times. Thank you so much. All right, so here is my talk with atrium health Dr. Mark Vanderwel, welcome to everybody who is watching. I'm so glad to have you with me for this little bit of an unusual circumstances bear with us. This is the first time I've done something like this. I am Stacey Simms, the host of diabetes connections and with me is Dr. Mark Vanderwel, a pediatric endocrinologist here in the Charlotte, North Carolina area with atrium Health. Dr. Vanderwel. Thanks for joining me, Dr. Mark Vanderwel 3:26 Stacey. It's an honor as always, Stacey Simms 3:29 well, we should say before we get going, we do have some disclaimers. But the very first thing in full disclosure that people need to know is that this is my son's endocrinologist and I've known Dr. V, as I've called him many times on the show and in my book for more than 13 years now. So we've never done an interview. Dr. Mark Vanderwel 3:48 Yeah. At least recorded interview for for diabetes connections. We did some back in your radio days. Oh, that's right. Stacey Simms 3:56 Yeah, I thought you were implying that I like interviewed you when I All right. Dr. Mark Vanderwel 4:02 So it has been a long time since we've communicated it never on this platform. Stacey Simms 4:05 Well, I really appreciate you jumping in because as you know, people have a lot of questions nervous times right now. So the The first thing we need to do is is do some disclaimers, obviously, while Dr. Vanderwel is our pediatric endocrinologist, he is not yours. So please, any comments questions that you may have addressed them to your own physician as well? Nothing I will put words in your mouth here, nothing that Dr. Vanderwel says today should be taken as your own personal medical advice. We're here to get general answers to general questions. And that's really about it. So I'm gonna put you on the spot a little bit, I think. But as you listen and watch at home, just you know, let's use some common sense here. Dr. Mark Vanderwel 4:43 Yes, I'm not speaking for the pediatric endocrinology community in general. I'm speaking for myself and different physicians have different perspectives on how they take care of kids with diabetes. Different physicians will have different perspectives on Covid 19. And what I am saying is my perspective And it will not even apply universally to all of the patients I take care of because we know you are all different. Similarly, I am not a pediatric infectious disease specialist. I'm not I am not an epidemiologist, and I'm not a fortune teller. And I think we're all worried and we do not know what's going to happen in the future. And a lot of what we're talking about is just predictive, then we don't know. Stacey Simms 5:21 All right, so good things to keep in mind. Also, this is first being broadcast live on Facebook. If for some reason as you're watching it, just bonks out or something crazy happens. We're recording the audio, this will be rebroadcast as a podcast, it may be broadcast in video in some other forms. If you have questions or comments. We're using technology called stream yard, and I can see your comments on Facebook, but we're not actually on Facebook. So there's a big delay, most likely, so bear with us. And I do have a lot of questions that I took in advance. So if we don't get to your question today, I promise it may not be with Dr. Vanderwel schedules permitting, but we are going to be addressing Senior questions going forward. And you know, we're just here to see what we can do. So we want to just jump right in. Sure. Let's go. All right. So my first question is really just about what you're hearing these days because I'm talking to you at home, you're not in the office offices is closed, but are you still getting close? Okay, so what are people asking? Dr. Mark Vanderwel 6:16 Yeah, so, you know, I think the the primary things are, will we still have appointments? And the answer is we will eventually have virtual appointments. Although a lot of people will also need to be rescheduled, we don't only take care of kids with diabetes, and there are some conditions that we do need to see face to face. In general though, I think most of our kids with Type One Diabetes will be able to seen by a virtual visit, and we'll talk a little bit about that in just a minute. We do still have nurses answering phone calls in our office, I'm not sure what other offices are doing. So we have nurses answering phone calls. We have a physician that's on call 24 seven for hospital based medicine. And so we will we are creating a schedule. That's why our office is closed. We're working on developing virtual visits. And we've never done this before the platform that atrium uses was originally designed for perhaps five, six pediatricians to use to handle only general pediatric calls. And now this platform is being spread out to be used by pediatric specialists, as well as general pediatricians. And I think more than 100 physicians and, uh, and other providers are going to be on this platform. So we're still learning how to do it. And that's why we canceled appointments for a few weeks, but we will have virtual visits up and running hopefully, by next week, Tuesday, Stacey Simms 7:34 because we're going to be in that soup, right? Yeah. Dr. Mark Vanderwel 7:38 Your name on my schedule when I was telling everyone that exactly. Stacey Simms 7:43 Alright, well, I won't call your office and ask what you're doing with me. I will let them reach out to us. When you're talking about virtual and again, this is kind of specific to your office. I don't even know yet. Do we on the other side have to do anything yet or you'll read? Yeah, we'll watch. No, Dr. Mark Vanderwel 7:58 we we Will for our type one diabetes patients will likely have a medical assistant call you first maybe on the day of the appointment maybe beforehand to review any changes in medications, any new allergies, the types of things they usually ask you while they were checking you back in. And then in preparation for the phone call with a physician, we are going to ask you to gather diabetes data for us whether it's a pump, download a CGM, download a meter download, and that'll be the main thing that we as physicians will review. So we'll tell you more. We'll try to talk through a little bit more about how to do that. Although hopefully you all know how to do that. The physician will also will hopefully again, this is all new. We'll have all that information online. Stacey Simms 8:42 If you're watching, you kind of saw me roll my eyes there. Dr. Vanderwel knows this but it's a little embarrassing to admit, I never upload anything in advance. I tell them please don't be mad at me. I think the only time I ever logged into T Connect is to upgrade the pump. So Dr. Mark Vanderwel 8:57 well you know, I think the thing is, we We'll be able to get that data without, without advanced uploading, I don't want to come that 100%. But I think if your data is there, we should be able to access it. But we're gonna learn that over the next three to five days. Stacey Simms 9:12 That's what we're all be learning it, I am sure. Um, in terms of questions that people have in between these appointments, you know, one that came to mind this morning was, you know, if I, if I need refills, if I'm worried about supplies, are you here? I know most people just call their physician pharmacies are open, but are you hearing anything about issues, shortages, that sort of thing with supplies Dr. Mark Vanderwel 9:35 whatsoever, and I hope we don't, um, you know, Covid 19 is going to affect people in every sector. And I hope we don't get to a stage where there's problems with pharmaceutical production at this point, there is no anticipated problem with production of insulin production of test strips production with any other diabetes related spies. And so No, I do not foresee that as a problem. I know there's the temptation to stockpile And that's one of the things that we've seen in the general public, obviously, with toilet paper, hand sanitizer, etc. And there's that desire Should I stockpile my insulin? Well, we can't commit insurance fraud. And so as physicians, I cannot write a prescription to your pharmacy saying suddenly that a child who used to use 20 units of insulin a day is all of a sudden requiring 200 units of insulin per day, so that your insurance will cover additional insulin, I can't do that. That's illegal. And so we will be honest with the pharmacies. I'm not sure how you can get extra insulin just in case that might be something better to work with your pharmacy in terms of what they will cover or what they will allow your insurance to cover. But I do not foresee a deficiency in any diabetes related supplies. Stacey Simms 10:45 Let's jump in and talk about Covid 19 best that we can. One of the questions that seems to be coming up over and over again is you know, we've all seen in the early days of this at least, the charts that came in from China and Italy saying they're the comorbidities and diabetes Sure, can you do you know what that means? Because one of the questions was, is it all type two is it you know, work? Dr. Mark Vanderwel 11:06 Right so earlier this morning I saw some data recently published in the New England Journal of Medicine related to the children 10 and under. And the only fatality in the Chinese data that was published was a 10 month old, who had had intussusception, which is basically when your intestines telescope on each other. And so the child was already previously ill because of that, and there were no other fatalities in that population under age 10. I do not have the data for other age groups stratified out but that was what I saw on the New England Journal of Medicine earlier today. When the word diabetes is used, obviously, that is a big word and often refers to both type one and type two diabetes. And so as far as I can tell from all the Chinese data, when it says diabetes is referring to the big group of both and everyone's worried at greater risk, because I have type one diabetes, or let's face it type two diabetes? And the answer is, we do not think that people with type one or type two diabetes are at any greater risk of contracting Covid 19 than the general population. So there's no increased risk of picking up this virus as far as we know. Now data changes every day. That's the caveat here. We are still learning but at this point, there's no reason to think that people with diabetes type one or two are more likely to get Covid 19. Just like any virus, whether it's the flu, whether it's the cold, being sick, when you have diabetes makes taking care of diabetes more difficult, and we see that frequently during flu season, that when people are feeling sick, and they may not be eating or drinking quite as well, they have the predisposition to go into diabetic ketoacidosis. And so my answer to how do people with type one diabetes are people who have children who have type one diabetes, better take care of their children, either if They have been exposed to the virus or if they are already showing symptoms of a viral infection. And the answer is us you're sick. And by Sick Day protocol, I mean check for ketones. Even if your child's blood sugar is 124, you can still get ketones if they are not eating or drinking very well. So remember, ketones are what happened, or what happens when your muscles become desperate for energy. And usually with people with diabetes that happens when you don't have enough insulin in your system to help your body take the sugar out of the bloodstream and get it into the muscle cell to be used for energy. But sometimes ketones can happen if you're just not eating or drinking very well. And so ketones can happen even with a blood sugar 124 if your child has been sick, or if she is vomiting or if he is not eating very well because he feels sick. ketones also can be happening more often in the presence of fever. So although as far as we know right now, nausea and vomiting are not necessarily symptoms of Covid 19 like they are the flu. For example, fever is When you develop fever, that can also cause greater metabolic need, your muscles become more desperate for energy that can lead to the production of ketones and cause an increased risk of diabetic ketoacidosis. So my summary is related to kovat, 19 and diabetes, your child is not at greater risk, their immune system should still work just fine to fight off the virus However, they are at greater risk for developing diabetic ketoacidosis in the context of a viral illness. Stacey Simms 14:29 A couple of follow up questions on that with keep checking for ketones. Do you recommend a keto blood meter? Are you comfortable with sticks and easily? Dr. Mark Vanderwel 14:40 Yeah, I mean, most people check urine for ketones a blood ketone meter can give you more up to date information, for example, that tells you what's in your blood sugar level. That's what's in your blood right now. Whereas your urine is often saying, well, we made this urine an hour ago and it's been sitting in the bladder for an hour so it's not as up to date as before. glucometer as a blood ketone meter is, but still I think you can get the information you need from, from urine, ketosis, I don't feel you have to rush out and get a blood ketone checker just because of our current situation. I mean, Stacey Simms 15:13 I'll be honest with you, and I don't know if this is true confessions time, we've never we've never purchased a blood ketones. This was the time I thought maybe, you know, the back of my head was like, should I get on Amazon? And then I got on Amazon, and there were so many and I thought, oh my god, I'm gonna buy a terrible one. So, um, stick with what we know maybe for me? Dr. Mark Vanderwel 15:31 Yeah, I mean, there are many other things to worry about. And if you felt comfortable checking your child's urine for ketones, there's no need to suddenly change to use a blood glucose blood ketone meter. Stacey Simms 15:42 Well, he's 15. So maybe, Dr. Mark Vanderwel 15:43 Stacey Simms 15:46 I'm sorry, this if you're just joining us, we did have a bunch of disclaimers that this is not medical advice you should be taking personally, but this is my son's pediatric endocrinologist. So I might sneak in some personal questions. We'll see. But the follow up question. fever. And then I'm going to ask you that question about repro fantasy. Before I even get to that one, do you recommend? I've heard that sometimes it's better to let the fever go, you know, not to 104 but to 101, things like that. Dr. Mark Vanderwel 16:17 That is a great question Stacy and I am no longer a general I should say this. I am board certified in general pediatrics, but I have not practiced general pediatrics for 15 years. However, that all being said, fevers makes you uncomfortable. When your temperature is high, you don't feel good, but many people are excessively afraid of fever as something that can hurt you, either in the short term or the long term and in general fever just makes you uncomfortable. So when we're sick, and we have a fever, we often for other illnesses have taken an antibiotic whether it's acetaminophen, whether it's ibuprofen, and what some, some French suggested Scientists have suggested is that ibuprofen and other anti inflammatories may blunt your immune response as of right now that information what's the exact word I had it pulled up is still up for debate. It is not necessarily something that is. That is a stocking answer that we say you must not use ibuprofen in the case of a fever related to Covid 19 unproven was the word I was looking for unproven so let's let's get the elephant out of the bag. What is killing people with Covid 19 is not fever. What is killing people with Covid 19 is respiratory distress is the inability to get breath in and children with diabetes are at no greater risk for developing that than children who don't have...
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"Just Don't Do Nothing" - Diabetes Dad Tom Karlya
03/18/2020
"Just Don't Do Nothing" - Diabetes Dad Tom Karlya
This week, the perspective of a diabetes dad. Tom Karlya has become much more than that since his daughter was diagnosed in 1992 and one of his sons in 2009, with many efforts extending through all parts of the diabetes community. But he says it all comes back to family. We’ll talk to Tom about his story, his efforts with the Diabetes Research Institute – the DRI – his acting career – and much more. Tom is a tireless advocate and if you’ve never heard him speak, we promise you’ll be inspired. In Tell Me Something Good – college sports, school scholarships and a young JDRF advocate answers Stacey's questions. 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, the perspective of a diabetes dad Tom Karlya has become much more than that since his daughter was diagnosed in 1992. And one of his sons in 2009. With his efforts extending through the community, but he says it all comes back to family. Tom Karlya 0:45 Communication is the most important thing. And for the for dads to realize, to look for places where you can pick up the ball and run with it, where you can be part of your child's life. Don't let your wife do it. Make yourself part The solution Stacey Simms 1:01 will talk to Tom about his story, his work with the Diabetes Research Institute, his acting career, and much more. Tom is a tireless advocate and if you've never heard him speak, I promise you'll be inspired in Tell me something good college sports school scholarships, and a young JDRF advocate answers my questions. 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 am your host, Stacey Simms. We aim to educate and inspire by sharing stories of connection when it comes to type one diabetes. My son was diagnosed just before he turned to 13 years ago. And I know there's an awful lot of stress in all our lives right now. This is a difficult time to say the very least. I'm not going to fill you up with a whole bunch of cliches here, but I do hope That as you're listening, you do know that even if it's online, the diabetes community is there for you. We're here to help. We're here to share stories. Hopefully your local community is banding together. I'll talk about that a little bit later on in the show. But this week's show is not going to be about COVID 19. It is going to be about some inspiration. You know, with everything that's going on, I thought it would be really nice to have something like this. Tom Karlya and I actually spoke a while ago. And while I was listening back to this interview, like I do all the interviews, it struck me that it sounds a bit like a keynote speech that you would hear at a JDRF summit or another diabetes gathering like friends for life, because all of those conferences have been canceled. I really thought maybe this would make you feel like you're hearing a speaker at a summit. Right? So let's listen to it. Maybe in that vein, and if you're bummed out like I am that those conferences have been canceled. I mean, let's face it, they are for education. They're for learning. They're for resources, but they're also just to get together and see friends, right? You know, maybe this podcast or the Facebook group can be some support for you a place to hang out. So you can always email me Stacey at diabetes, connections calm, or jump into the Facebook group, which is diabetes connections with the group. I know that diabetes makes us tougher to begin with, right? This is such a great community. And we do know how to help each other out because we do it all the time. Right? I think we're seeing some neighbors come together in the greater community, at least if where I lived, you know, do you need this? And can I go to the grocery store? People with diabetes, have been doing that for a long time. So let's just not stop doing it. Now. As you'll hear Tom say, as he has said for many years, you just don't do nothing. You can do a little something and really help. And we'll hear from Tom in just a moment. But first diabetes Connections is brought to buy One Drop. And you know, I spoke to the people at One Drop and I was really impressed about how much they get done. 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 comm and click on the One Drop logo. My guest this week was brought into the diabetes community back in 1992. When his then two year old daughter Kaitlyn was diagnosed one of his other children he has two other sons would be diagnosed 17 years later, but Tom Karlya jumped Writing to see where he and his family could help taking part in early JDRF campaigns, the Diabetes Research Institute and children with diabetes. I think Tom vo would tell you the best thing about him right now is that he's going to be a grandfather. The news came after we had spoken for this interview already, but his daughter Kaitlin, and her husband Andre, are expecting later this summer. And yeah, that's the Kaitlyn diagnosed as a baby herself basically back in 1992. Here's my talk with diabetes dad, Tom, Carl. Yeah, Tom, thanks so much for joining me. I cannot believe that I'm just now finally talking to you for the podcast. I appreciate it. I know how busy your schedule is. Tom Karlya 5:42 Wow. They Thank you, to you. I mean, it's it's you know, I guess they say when people are busy, they're busy. And those are the type of people we like to hang out with. So I know how busy you've been, how busy I've been, and now the twain has met. So that's terrific. Stacey Simms 5:55 So much to talk about here and I want to talk about your you know, your experience. ances over these many years, but let's start by, you know, your work with the Diabetes Research Institute foundation. Do you mind telling us, you know, for people who may not be familiar, what is that? Tom Karlya 6:13 The Diabetes Research Institute in the foundation is is has support for the Institute. It is all the money that the foundation raises goes to the Diabetes Research Institute, which is an 87,000 square foot building that sits on the campus of the University of Miami about 35 years or so ago, when the Diabetes Research Institute foundation first began by a group of parents like many of the diabetes organizations that are out there, somebody there had a connection to the building and construction trade union. And that gentleman said, Why don't we try to raise more money for you. And during June on Father's Day weekend, they created debt, dollars against diabetes and they stood on street corners around the country with buckets and they collected change from anybody at the stop. The lights, etc, etc, etc. And they continue to do that. So they had enough money, and they raised like $14 million. And they took and they built the Diabetes Research Institute, which when it came time when the building was done, the foundation said, Let us name the building after you and all the terrific people of the building trades unions, and they sit down and they say, let's just put a plaque on the wall that said this building built by the hands and hearts of Americans construction unions, and that plaque is still there. It represents a beacon of hope nobody expected it to become the research center that so many organizations, the wonderful organizations out there, the JDRF the ADA is the National Institutes of Health. They fund us We are the scientists doing the work at that center, Stacey Simms 7:52 and d-ri to be clear if people are not familiar. The work that Dr. II does is cure, cure focus research. Right, Tom Karlya 8:00 secure focused all the stages of research, basic preclinical and clinical happen within one building. A lot of time in academia, you come up with a finding, then you have to go someplace else to find somebody to collaborate with, we go from one floor to the other floor to the other floor. And our saying is, if we can't move it up, we move it out. Because funds are so limited, we have to make sure that we stay focused on that supply, sustainability insight, which is the three main pillars that we look for, to cure this disease once and for all. And there's also a d-ri Federation, we share all of our information, we hold on to none of it, and we have federations around the world for that matter that we share information with because in Italy and in China, they can do the research a lot cheaper than we can do here. So a lot of times we'll test things out there, then bring it here and follow through the steps of the FDA that are set, etc. to try to get it from the bench to the bedside. Stacey Simms 9:00 It's so interesting when you kind of dial down and look at how these things work. And I know that as some people are listening, they may be thinking, well, if it's so cure focused, and it's been around that it's funded, you know, how can we don't have more progress? How can we don't have a cure? Unknown Speaker 9:14 I hate to put it in such simple terms. But Unknown Speaker 9:16 can you talk a little bit about some of the progress that has been made? Tom Karlya 9:21 Yeah, that's, you know, I said this before, that's your mouth to God's ears. That's been our hope since the beginning. And it is such a complex disease, and all the wonderful organizations out there as well as the research centers out there. This is just not an easy disease to figure out. I mean, years and years ago, when we first it would there was nobody funding research years ago for type one diabetes, and then to go out there and say, well, we're going to try to cure it. Well, as we went along, and as many other organizations that have, in their wonderful ways have funded our work and work around the world for that matter, have found out just how calm Flex this disease is years and years ago, we were actually told we were one of the first centers. And actually Dr. Kamila, recording our scientific director. He invented the machinery with a board member, Ramon Poe, who donated all of this time, they created the machinery to separate the islet cells from the pancreas when they get donated, and we give that to anybody around the world just to help them try to move it forward. But nobody knew that taking islet cells. So this is interesting, because I've been at this for 26 some odd years since my daughter was diagnosed at age two. And there was a time when people thought you will not be able to take islet cells, insulin producing islet cells and down years later became trying to re engineer stem cells and things to create insulin. There was no proof out there, that you could take islet cells and put them in another body and they would work well. They Did and I have and what's happened since that time is that as we move science forward, you know, I think we should do everything we can to try to figure out how do we make islet cells produce insulin in another person's body without being attacked? And why so many of these are immunosuppression drugs. You know, when we first started, people would say, Oh, yeah, but there are immunosuppression drugs. What people need to understand is that when it came time for the scientific studies, the quality of life of people who entered these research projects, they became patients for the clinical trials, they had no quality of life, because they could not feel going hypoglycemic. They could not feel their blood sugar going low. They couldn't drive, they couldn't hold jobs. They be talking to people they just kill over. So for a lot of these people, this first islet cell transplant became lifesavers because their quality of life was just not existed. something interesting happened when we did that. And around the world, this was done to a lot of different centers and not just at the d-ri, but we were at the forefront of it. And the interesting thing about it, even patients that went back on insulin, for the most part, not in every case, but in the majority of the cases, probably even excess of 80%. But that's just my layman's guess. They're hypoglycemic reactions went away. Even if the islet cell transplant did work, and they had to go back on insulin again, they did not suffer from the hypoglycemic episodes that they had. It has always been this great moving science forward. But the truth of the matter is, is that we will continue to work and I and I was active, I was doing other things when Caitlyn was first diagnosed. And for those who don't know the story, I was an actor for years. I was in a show in New York for for 1314 years talk about that. And we'll get to that and I've done a lot of great things, but I was on my way to a matinee performance when my beeper went off you tell people about beepers like What's that? And it just was said 911. And I went over to the phone, I can tell you right where it was, I remember to this day, I went to hold off of the of the bridge and the Lancey street in New York City. I went to a phone booth, for those who don't remember phone booths or things that had a phone in it. Right. So I called home and my wife said, Tom, I have to rush Caitlyn to the hospital. They think it's type one diabetes, and she had been sick and she had the flu. And, you know, again, it was everybody thought it was something else. And when I got to the hospital, which took me two hours, that was a whole episode in itself. I saw I looked down the hallway and I remember my wife Jill had Kaitlin's jacket was hanging from her hands. And we just looked at each other and I went in and Kaitlin had all these wires and everything attached to her. And I pushed the hair out of her face and I said, Hi honey, and she said Daddy, and she looked at everything she was attached to and she looked me square in the eye and She said, and it stuck with me. I remember it every day when I start my day. That was a promise I gave my daughter. And I became, you know, whatever. I became an advocate and constantly working at it. And then I got really, really angry because I thought my reward was 2009, my 13 year old son was also diagnosed. So I was pretty angry. And that was also four days after my dad died. So when someone tells me they had a flat tire at a supermarket that week suck, they said, Oh, no, no, I can beat that. Well, so an X and here we are, you just Stacey Simms 14:35 have your two year old daughter looked you in the eye and say daddy fix to something that there is no fix. I don't want to make you relive that moment. But when your son was diagnosed, and that was Rob is diagnosed 17 years later, the change in the diagnosis. I know it's not a fix. There's no fix yet, but what was your perspective at that time because the diagnosis had to be different and the care had to be different. Right back to Tom answering that question in just a moment. But first diabetes Connections is brought to you by Real Good Foods and there is something new from Real Good Foods. They have ice cream. Oh my gosh, real good ice cream. My whole family tried it. We have our favorites. I'll share a little bit more specifically down the road. But oh my gosh, the vanilla is delicious. That's the first one we tried right because you can't hide anything with just a vanilla. So we went right to that. I mean they have other great flavors. They have mint chocolate chip, they have chocolate, they have peanut butter chocolate chip, and we started with the vanilla and it was really good. It tastes like real ice cream because that is what it is. You can find out more at the website and preorder. It's available in select stores. As always, there's the store locator on their website, find out more just go to diabetes, connections calm and click on the Real Good Foods logo. Now, back to Tom Carl. Yeah. And he is answering my question about how different it was when his son was diagnosed with Type 117 years after his daughter. Tom Karlya 16:13 Wow, you're absolutely right. And again, the tools, I always use that phrase, the tools that our diabetes toolbox for our kids has become so amazed, we used to have to wait 90 seconds. After we put Kaitlyn at that time, we couldn't even do our fingers. We had to do her toes. So we get a blood drop on a glucometer. And then we would wait 90 seconds. See if I could help everybody understand one main point that get diagnosed today than when not only 2009. But 1992 when Kaitlin was diagnosed, that the tools we have now are so far advanced. We always say when we try to get our children to live normal lives, you literally can live as close to a normal life as you can accept and there's a huge death there is your child. Type One Diabetes. But for those who have it understand what I mean that with the technology we now have, there was no, Caitlyn was the second child on Long Island to go on an insulin pump. Wow, could you imagine people don't realize that these things were the size of backpacks when they started these. I mean, it's not, you know, like an astronauts backpack, they were huge, but they got smaller, they got better, they got quicker. And that's why research to me, that's why I will never give up hope. Somebody looked at somebody checking their blood sugar, and they said, We can do better with that. And we have, and it's the same thing with research as long as there's a research center. And for me, this is just and everybody else can find their own place where to give their time and energy, but the Diabetes Research Institute, the fact that they are focused now that's a very interesting greement to have with academia, that we are focused on curing type one diabetes, and when we do that many of the patients type two patients for an insulin We'll probably benefit from that as well. But our focus is to cure this disease. As long as there's a place like the d-ri that focused on curing this disease, then I will never give up hope. Stacey Simms 18:11 My question on that you said something very interesting. You said it's a very interesting agreement to make with academia. Do you get pushback from people who want to do research, but it's not cure focused, Tom Karlya 18:22 we get not pushback, but we get increased from any university has the right to do and the University of Miami and we have to be honest, as you know, it's such a wide range University. It's got so many different aspects to it. But when they come to us and they say, look, can we look at looking into the type two type of research? Well, we tell them to go to another part of the campus and look for it. And they do. There are places probably on us campus that will focus on...
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Coronavirus & Type 1 Diabetes - Update
03/12/2020
Coronavirus & Type 1 Diabetes - Update
A brief update on COVID-19 and type 1 diabetes recorded March 11, 2020. Stacey talks to Dr. Satish Garg, an endocrinologist at the Barbara Davis Center for Diabetes. Dr. Garg talks about what we know right now, what he's telling patients and advice for anyone with T1D. Find out more about Coronavirus: ----- ----- 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 Welcome back to another episode of the podcast really glad to have you along. And once again, we are doing a short episode on Coronavirus and type one diabetes. I'm your host Stacey Simms. And you know after we put out an episode at the end of February about this, I heard from a lot of people who asked me to keep updates coming. Now as I have said before podcasting isn't really the best medium for breaking news. You can listen to this episode immediately as it comes out. You could be listening to it weeks or months years down the line. But I do think we can use the podcast here to get some good information out. So in the limited way that we can, that's what I'm trying to do. This episode is going to be on the shorter side, maybe 15 minutes of the interview with an endocrinologist just sort of talking about where we are right now and answering some specific questions from listeners. We will have a regular Diabetes Connections, interview and show next week. I'm going to come back after the interview and I'll talk a little bit more about the show going forward. I am recording this on March 11. The same day the interview with Dr. Satish Garg was recorded, obviously, the information may change. That's why I'm telling you the date. Please make sure you check the links in the show notes. They are on the episode homepage, or in the show notes. If you're listening on an app. It's kind of hard to find sometimes, but most podcast apps will have a place that says details or more information and that Where I'm putting the updated links, the ones that will automatically update when it comes to the coronavirus. And one more thing, you're going to hear Dr. Garg mentioned people with type one diabetes as having compromised immune systems. I did press him on this off the air and he says he uses that term to talk about people who have an autoimmune disorder like Type One Diabetes because he says, once you have one autoimmune disease, you're likely to get more like celiac disease or Addison's disease or other auto immune issues. He said, and you will hear him say this, it does not mean that people with type one diabetes are more likely to get sick from viruses like the flu, or COVID 19. With all due respect, I think it was a confusing way to talk about autoimmune conditions. And if you've listened to the show, a compromised immune system is not how anybody has talked about it before. So I did think that was worth pointing out to you. All right here is my interview. It is with Dr. Satish Garg of the Barbara Davis Center for Diabetes. Dr. Garg, thank you so much for spending some time with me. I know you're not only seeing patients but you're trying to reassure patients that I'm sure are calling in about the situation right now. how busy is your office at the moment? Are you fielding a lot of worried calls? Dr. Satish Garg 3:24 Very many. I mean, my staff is swamped and getting calls and wanting us to write letters because they have Type One Diabetes should they go to work? And not only me and my emails are also we have nine different providers on the adult side here at the Barbara Davis center for diabetes and so many educators and all of them are swamped with these emails and text messages they're getting from patients. Stacey Simms 3:52 So what are you telling patients who are asking if they should go into work? Dr. Satish Garg 3:56 We primarily tell them to go on to these websites. JDRF has created a nice website giving guidelines for people with type one diabetes and also tell them to go on our website we posted some through University of Colorado and to coronavirus.gov and that is to the CDC. And if they have some degree of comorbidities, for example, if they are older, older than, you know, 60 or 65, and they have heart disease, hypertension, obviously they have diabetes, they may want to avoid places where there are larger crowds, or they may want to avoid unnecessarily getting in contact with somebody, for example, going for rallies and things like that people need to avoid so general precautions nothing specific to people with type one diabetes, except if they have comorbidities. We do recommend people to get the flu shot but they are specifically not at high risk of getting Any of these infections if their glucose control is good. But their immune system is compromised, because they have autoimmunity, it does get confusing. So the bottom line is that people have tried to maintain their glucose control as best they can to avoid hyperglycemia and avoid wide glucose excursions. And those are the general precautions. And of course, if their glucose control is not good, then they might be more prone to get bacterial infections and other infections, but their immune system is not normal, quote, unquote, on a healthy individual like you and I, who don't have type one diabetes, our immune system is different than the ones with Type One Diabetes. So it makes sense. Stacey Simms 5:45 Yes, absolutely. I totally understand where you're coming from with that. But bottom line, good glucose control, you are not more likely to get COVID 19 if you have type one diabetes. You said right before we started taping that you had just seen an 84 year old patient with type one, what's your advice for that person? Dr. Satish Garg 6:05 So we have more than about 400 patients who are older than 60-65 who have type majority of them have type one diabetes and some have type two, but they are requiring insulin therapy. Anybody who is in that age group, I always advise them especially many of them have comorbidities hypertension, hypercholesterolemia, heart disease. So those individuals I tell them specifically avoid, I'm not asking them to quarantine. Of course, if they have dry cough, and they start running fever, they should self quarantine, do advise them not to travel because right now, we don't know how the aircraft and what have you are being cleaned. Avoid large crowds. So just the general precautions that CDC advises that's what we are recommending to go People go they are definitely at high risk, one because of the age, second type one diabetes. And third, they have majority of them have some degree of comorbidities. Stacey Simms 7:11 You know, one of the questions that we see a lot is, how can I prepare to be self quarantined? You know, a person with diabetes or household that has a person with type one diabetes in it. What are you recommending people keep on hand for two weeks, 30 days? Dr. Satish Garg 7:28 Well, I think there might have been an overreaction to that people are slightly overreacting. Oh my God, we might suddenly be locked down, like Italy's logged on, like part of China was locked down. I hope that doesn't happen. So people are going on ordering insulin, masks and what have you. We don't anticipate that for example, in the state of Colorado, we only had about 15 to 20 cases now having a tip that they haven't tested a whole lot once you get a lot of people tested that One will really know the hard numbers right now, unfortunately, we do not have the hard numbers to how many people have been really affected by this disease. But we just give general advice to these individual. Stacey Simms 8:15 You mentioned people trying to stock up on insulin. You know, one of the problems is a lot of insurance companies will not pay for that much, right, people are trying to get the prescriptions renewed. Are you running into that same thing, Dr. Satish Garg 8:26 most of our patients would have about three months of supply, and if some of the insurance companies won't give them luckily for us at the Barbara Davis center, we have so many samples, we just give them one or two extra pens or vials so that they don't have to worry about it. Again, I'm hoping that this won't be a major event. Let's hope as the temperature turns around, that this virus will be just like what was Spanish Flu back in 1918. That will go through the cycle, but we don't know that a lot of people most of us Do not know the exact cause of this particular virus. Stacey Simms 9:03 I will defer to you as the medical professional, but you're hoping it's like the Spanish Flu of 1918? That killed an awful lot of people. Dr. Satish Garg 9:11 Well, but the Times have changed. You're right, that killed millions of people. No, we're not seeing anywhere close to that. Because what healthcare was 1918 100 years later is night and day. For example, back 40 years ago, I used to tell all my type ones, you're not going to live beyond 35 to 40 years of age. Today, I tell all of them, you're going to reach 80-90 years of age, I'm not aiming at 100. But you're going to reach nearly full potential of your life expectancy. So times have changed healthcare quality and what is available had changed night and day. So I think it'll be unfair to say that we're going to see those sort of mortality rates, but we saw back in 1918 because of the health care standards that are changed dramatically. Stacey Simms 10:01 Um, you know, another listener of mine, I'm reading you some questions that I took from my listeners. And one of them had asked that there are some studies that people with type one have worse outcomes after major events like heart attacks, because of the autoimmune issues that people with type one already have. So she's concerned about that with Corona virus. Is there any indication? I know it's still early that one of the reasons that it kills people is because it does affect the immune system. Dr. Satish Garg 10:32 So here's the problem, Stacy with that we do not have data to say that affect anything right now we have so few deaths in the US or even worldwide, and leave alone people with type one diabetes now convert to the best of my knowledge. None of the patients with type one diabetes has died. But again, that may be what I know of the numbers. Again, we do not have any for example here, the Barbara Davis center. We don't have any patient with the corona virus, and they have a significant number just like any other clinic of comorbidities. But we don't have any such problem right now. We are telling people in general to avoid travel for example, please don't be on a cruise ship that is a living source of petri dish that you're going to be definitely there is even 1% chance that you can avoid that you should avoid going on a cruise ship. Now, regarding other travel, the University of Colorado has already banned all our personal and domestic and international travel. So some common sense is to be taken into con in the sense if you really don't have to travel anywhere. avoid that. That this thing's bad. Through, hopefully just like a flu virus, and over time, it will all go away, we'll hopefully find a vaccine. And this will be a thing of the past. But right now, there is too much unknown, especially in patients with type one diabetes. Stacey Simms 12:14 All right, so I have a question for you from Julia, one of my listeners who is actually a flight attendant, so she says, I have no one to ask this question. I don't know if you'll be able to answer it, but we'll give it a try. She says I fly internationally to London. I do everything I should to avoid getting it but I have accepted is likely I will get COVID 19. When this happens, and I'm told to self quarantine, unless it's very life threatening. She says, What should she do for herself in a mild case scenario? So here's the question a person with type one who does get this and is not having a life threatening incident of it. What should they do? Dr. Satish Garg 12:54 I would do self quarantine. Make sure you have enough insulin, fluids and whatever else necessities of day to day life you need. Yeah, they should be no different course to the best of our knowledge. Again, as you asked me earlier, the effect on diabetes, But again, we have no data that anybody with type one diabetes who is well controlled, behave any differently than the ones who don't have type one diabetes. So, General precautions, you got mild cough, small fever, self quarantine, and you should do fine, just like you would do it for a regular flu Stacey Simms 13:33 and your regular sick day plan that everybody should have their endocrinologist in ketones, that sort of thing. Dr. Satish Garg 13:39 Yeah. Great. Stacey Simms 13:40 You know, we've said well controlled several times, and I know every one is different. And I almost hate to ask this question, having a child with type one for 13 years. So I think I know the answer, but I'll ask it anyway. When you mean well controlled, is there a number again, knowing that everybody's different? Is it an A one C of 7.5? Is it a Is it an in range? The time in range number, you know, when do we start worrying about well controlled type one diabetes, we know an A1C of 14 isn't going to cut it. Dr. Satish Garg 14:08 So there are many ways here, as you rightly said, for example, somebody at the age of 70 or 80, I probably don't want their A1Cs to be in the 7s, because they have lived their life. They don't have any significant comorbidities. Why don't you just take it easy and avoid the risk of hyperglycemia. Someday in the teenagers 30s and 40s, you probably want to me one sees around seven, with a time in range of 65 to 70%. That's our goal. 70% of our patients use some sort of a continuous glucose monitor, which is what we recommend and that is true for everybody who is at risk of getting Corona virus. That is one advice I would definitely give them that they should go on a continuous glucose monitor if they don't have one just because when you're sick, your blood sugars are To be higher that you need to be rather than having to finger prick every five minutes. Why don't you have a continuous glucose monitor, preferably a Dexcom g six because that is far more accurate as compared to the average Libra, which is cheaper. However most insurance companies pay and thus you can continuously be monitored and adjust your insulin dose accordingly. Rather than having to prick yourself 10 times a day. That's the only advice I would make change, especially to the flight attendant. Also, if she's not using a CGM, I would strongly recommend that to use as one. Stacey Simms 15:36 It's interesting when you mentioned cost. I did get a question and I know it varies state to state. I know you're a doctor, not an insurance expert. But do you know when a governor declares a state of emergency, you know, in North Carolina, our governor has recently done that it is mostly about federal funding. It's not about emergencies in the street. I think most people recognize that by now. Is there any leeway for people To get extra supplies to be able to pay for things at the pharmacy, like a Dexcom? Dr. Satish Garg 16:09 Yeah. I mean, I wish I had an answer for that. The only thing I would say is, if that scenario happens, I'm sure we can get a special prior authorization. This is a scenario that nobody has seen or confronted with. So we don't know answers to many of the questions you're asking. However, if one is facing that situation, we could definitely look into it and get a prior authorization for that individual. Stacey Simms 16:36 Has there been any information coming out of you know, China or Italy or elsewhere, where they've been dealing with this for longer about people with diabetes and about how it reacts with COVID 19. I know when we say diabetes, that they lump everybody in there as one part to separate it, but have you been able to parse anything Dr. Satish Garg 16:55 and that's what I was going to tell you next one in China. According to To quote unquote, what they say, Type One Diabetes is rare. I don't know to what extent is that rare, they just don't have the information on that attack. Secondly, they lump all diabetes, type one, type two, type two, who has a lot more comorbidity is a very different ballgame falls into those individuals who are more vulnerable and who are elderly. So I don't think those criteria may fit. So we don't have any data to that effect, specifically, type one diabetes. Stacey Simms 17:30 What are you all doing in your office? As you said, You're seeing patients, you're they're talking to me today? What are you doing to stay safe? Dr. Satish Garg 17:38 Just the general precautions, asked my staff to make sure they clean all the clinic rooms, we have like 44 exam rooms, clean all the exam rooms, surfaces and whatnot. And again, we've been lucky. None of our patients have yet been at least reported to have any of these coronavirus to so far be unlucky but who knows when you Going to be confronted, I'm sure you must have heard there was a meeting in Boston, where there were 200 biotech people, and I believe 17 or 20 of them have come down with the corona virus. So that is obviously put issue, whether we should have these large gatherings at all. And I would just lastly say to all patients with type one diabetes, just take care of your diabetes, the usual way, it's not a bad idea to have some extra supplies in case like what they have done in New Rochelle in New York area where they're calling it containment, basically, allowing less movement in the community. So it's not a bad idea, do a few extra days worth of the supplies but take care of your diabetes, the usual way as best as possible. I strongly recommend using a continuous glucose monitor does if you were to be infected, you have continuous access to the data. just you glucose management much better. But otherwise there is lack of data in specifically to type one diabetes and there is no different we will behave just like as a non diabetic individual. Stacey Simms 19:13 Well, thank you so much for spending some time with me. I appreciate it very much. And we'll check back. If any of the information changes or frankly, we get more of it. Right. We'll get it out there. But thank you so much. Unknown Speaker 19:29 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 19:34 As Dr. Garg mentioned, there is a lot that we as recording on March 11 still do not know especially any kind of breakout information when it comes to type one diabetes. So keep in mind as of right now, when you're hearing people talk about diabetes, they're lumping everybody with every type of diabetes together. You will find more information in the episode homepage including The links that Dr. Guard mentioned at the very beginning of that interview. Alright, so here's the situation on the show going forward. And you know, this may just be for this next week, I have no idea. Like I just said, there's a lot of uncertainty here. But I am not going to make the show all about COVID 19. At least not right now. In the Facebook group at Diabetes Connections, the group, I took a poll, and...
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Lilly Diabetes Device Update: Connected With Dexcom & More
03/10/2020
Lilly Diabetes Device Update: Connected With Dexcom & More
Lilly Diabetes announced they were getting into the pump and pen business almost two years ago. How’s it going? We get an update from Marie Schiller, Vice President of Product Development for Connected Care and Insulins at Eli Lilly – Connected Care is what they’re calling this platform of pumps and pens – now to be integrated with Dexcom. We’ll also have a bit of an update on some other pump companies’ plans for the near future.. bolus from your phone?! In TMSG a big fish, a hula hoop winner and a chance meeting over a foot? 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 0:27 This week, Eli Lilly announced they were getting into the pump and pen business almost two years ago. How's it going? We get an update. And of course I asked about price and access. Marie Schiller 0:38 Look, we're not here for the sake of having this innovation sit on a shelf somewhere, not why I'm here. It's not why others are here. And so it is really important for us to be laser focused on how people act. So Stacey Simms 0:53 that's Marie Schiller, Vice President of Product Development for connected care and insulins at Lilly We'll also have a bit of an update on some other pump companies plans for the near future. Well, let's sing from your phone in Tell me something good a big fish, a hula hoop winner, and a chance meeting over a foot. 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 your host Stacey Simms, so glad to have you along for another week. As always, we aim to educate and inspire by sharing stories of connection. My son was diagnosed 13 years ago with Type One Diabetes. My husband lives with type two. I do not have diabetes, but I have a background in broadcasting. And that's how you get the podcast. I'm excited to catch up with Lilly. I know a lot of people don't want to hear anything from them until they address the price of insulin. And I do understand that I want to be sensitive to that. And I definitely asked Marie all about that. Even though she has nothing to do with the price of insulin but she doesn't work at Lilly and this system. I can't be really separated from that, let's be honest. But I also think I have a responsibility to share what's going on in terms of diabetes technology, and Lilly plans to be a big player in this space. So that's what the interview is all about. We'll be talking about their system. We'll be talking about their partnership with Dexcom and other things as they move forward. Before we get to that, I want to thank Kerri Sparling and the folks at children with diabetes. We replayed the interview that Kerri did with me this was on their YouTube channel and then last week in the kind of the mini episode although it wasn't really a mini we replayed the audio from that interview. It's always a little weird for me to be on the other side of the microphone, but it's always a lot of fun to I bring it up not to hammer on the interview again, if you wanted to see it or listen, you know, you know where to find it and I will link it up in this episode. But because they are doing a contest. The contest is open until March 20. And to enter you do have to email them so I will link that As well, it's over on the children with diabetes a website. But all of these links will be in the episode homepage. They're giving away a paperback of the world's worst diabetes mom and the audio version. So I'd love for you to go and enter and find out more on their websites. Speaking of the book, I am having such a blast on the book tour that I'm doing this year. You know, we'll see how it goes. Obviously there are some health scares out there right now. And I'm not sure that all the events are going to stay as scheduled for right now. They're all on the books that's on the website as well. And if you're interested in the world's worst diabetes mom, that's an easy place to find out more but I have to share with you that I got a great note from a woman in Australia who listens to the show and you know, has read my book she bought it you can get it on Amazon really in so many countries now print on demand is absolutely amazing. And she got it in Australia and she reached out to me because her local group wants to do a bulk order. So we are doing that. And if you have a situation like that where you would like a little large number of books for your group. please reach out to me directly. You don't have to just buy it on Amazon for the full retail price. I am happy to work with you. My publisher has given me some ways to do this. That really makes sense. It's an amazing thing to think about people all over the world reading the world's worst diabetes mom. It didn't say America's worst diabetes mom. So I guess I have to stand by that now. All right. We will have the interview with Marie Shiller from Lilly coming up in just a moment. But first let me tell you about Real Good Foods Diabetes Connections is brought to you by them. Have you tried their cauliflower crust Margarita pizza. They have a full size and a personal size as well. So yummy. It is low carb high protein real simple ingredients. And you know you gotta be careful because some cauliflower crust pizzas are made with corn starch. You know rice flowers, processed grains. And if you're looking for something that is 100% grain free and gluten free, this is what you're looking for. I love how Real Good Foods keeps creating Eating new products, they keep coming out with new yummy foods for us. It's the kind of thing where you as soon as you don't feel like cooking, sometimes you want the convenience. And when you go for convenience, you really don't want to sacrifice nutrition, right? I mean, you don't want to just pull out some junk food. I love Real Good Foods, it tastes terrific. And the people behind them are solid. They get involved in our community. They listen to what we have to say. It's really nice, find out more, go to diabetes, connections comm and click on the Real Good Foods logo. My guest this week is Marie Schiller Vice President of Product Development for connected care and insolence at Lilly. Two years ago, I was part of a group of writers and reporters from the diabetes community invited to Cambridge, Massachusetts, to take a look at Lilly's entrance into the pump and pen market to give feedback on those plans and to hear from their partners. We did an episode back then and I'll link up what I and others wrote at the time. No pictures still of what they show. Very briefly that day, they showed us kind of the prototype, but it is a tiny pump. It's kind of like a fat little disc. It's much smaller than an omni pod pod. It's maybe about the size of the tee sport that tandem is coming out with. I'm actually going to talk more about that after this interview a pump update from tandem some news from Omni pod. We'll get to that after this interview, but I'll put up some photos of the T sport, but this is thinner than that the Lilly pump is just a small thin disc. It is tubed. So the idea is that you can stick it to your body or use longer tubing and put it in your pocket. We do talk about that. It'll fit in the palm of your hand very easily. Of course we do talk about the price of insulin, and what that means for access of anything coming from Philly. So here's my interview with Marie Schiller. Marie thanks for talking to me. I'm excited to catch up. It's been about almost two years since we've MIT in Cambridge, thanks for coming on the show. Marie Schiller 7:02 Thanks for having me. I'm excited to be back. Stacey Simms 7:05 All right, so give us the update. I know we're going to talk about the partnership with Dexcom and some other things that Lilly is working on. But when we last left this episode, the last time we talked at least in person, you over talking about the device that Lilly had been working on, can you give us an update on that Marie Schiller 7:25 I can and maybe to be helpful Stacy just to remind the audience of what we've been working on. So Lilly has a personalized diabetes management system that is incorporating inform delivery devices, software and analytics. And obviously that will be combined with glucose data and other contextual information in order to hopefully to improve diabetes management. We have two parts of that system. So we obviously have a pen based platform where we'll be using our refill disposable insulin pen, with data coming in from glucose monitoring devices and be able to combine that with different elements of care in that platform. And then the pump based platform, which would be a hybrid closed loop system, integrating the the pump itself in with a continuous glucose monitoring and an algorithm as well. So that's the journey we started on. I think we were we had not just kicked off the program when we last talked a couple years ago, but it was certainly early in the development program. It's been a frankly, an awesome couple of years is advancing both of those areas we had started I know when we last talked, but with the development agreement with Dexcom, which we have continued to advance our relationship with Dexcom and now have entered into a global commercialization agreement with them. We continued our clinical trials with the pump based system we'll be talking about Some of the first clinical data will be shared this coming February at the the conference in Madrid at TCU. And on the connected pen side we have, so we secured a supplemental drug approval for the pen that will be compatible with the personalized diabetes management system. And we're in the midst of working with the FDA on the other components of the system that we will need to bring forward and launch the entirety of that integrated solution. Stacey Simms 9:35 So there's a lot of moving parts, there are a lot of different things going on. You mentioned the clinical trials, and let's kind of take this step by step. I'm sure you can share the information ahead of the release. But what were you looking for this was for the pump system. Was this a safety trial? Was this an outcome trial? Can you share any information Marie Schiller 9:55 for you know, I won't go into any details that we will be sharing at the conference, but As has been seen with other products going through on that hybrid closed loop system, we are focused on showing that the system is functioning accurately. So we are looking at that first stage looking at different you know, stress situations with the system making sure the system is responding as we would expect it to respond. And obviously as part of that is the safety of the system. Stacey Simms 10:27 So, as we're talking about this system, what's so intriguing about it to me is that it is a pump, but it acts more like a pod. At least it did when I last saw it or I saw a mock up of it even so is it still that way it's very teeny tiny, but it it acts as a tube pump with a very small tube that goes into a traditional inset Is that still the hardware? Marie Schiller 10:47 It is so we what we like to call it is that is a hybrid system meeting on the days that you want to carry it and put it in your pocket or wherever is your choice of carrying it. You could use a standard length infusion set or a long infusion set, whatever your preference, but on days that you wanted to wear it, and adhere it to your body, you could do that. And so it would still work with a standard catheter infusion set, but you would obviously be using a shorter tube in that instance, if you choose to wear it on those days. Stacey Simms 11:24 You know, it's funny, Marie, I've I didn't ask this when I first saw it two years ago, and I keep thinking about it, because now tandem has a I don't know where they are in their development stage. They have the T sport which sounds very similar that they're hoping to come out with. How do you actually were these tubes, tiny tubes, pumps, the hybrid pumps on the body? Did they just kind of dangle from the tube? Do you stick them to your skin? Does it work? Marie Schiller 11:47 Yeah, I can't comment on tandem. It's a great question though. Stacey, you know, obviously with our so there's an adhesive component where you are wearing the pump. It's not obviously on the infusion set right? But ours is where you would be adhering to the pump itself. Stacey Simms 12:04 And my frustration was I thought you're gonna say I can't tell you anything. But that's great. There's like a sticky on the pump and it sticks to your skin. does it stick to the body? Like a? Is it like a Dexcom? sticky? Or is it like the ever since which is more like what I call a color forms? Remember those color forms? You could take them on and off and on and off? Is it more like that? Or is it once it's stuck to your skin? Then you kinda have to pry it off. Marie Schiller 12:34 Yeah, I may, at this point, just pull back a little bit because I think I may be going down. I may be going down the rabbit hole as if I'm trying. I feel like I'm going to be playing a game of charades as I try to walk you through how the system works. And it may be more confusing than helpful. So yeah, as I mentioned that you have the ability to wear it and there's an adhesive system and we'll leave it at that. Stacey Simms 12:59 All right. But it's very interesting. So then my next question is, do you know if Lilly is going to be developing new infusion sets? And I asked this because I've shared for years and years, and I'm not the only one, that I really think that the traditional infusion sets are the weak link of any pump. They're just not great. And I'm always hoping that somebody is going to come up with a better one. Any chance, this is part of your plan? Marie Schiller 13:24 as we've talked about, look, we are looking at all components of the system. Right. And so we are starting with our core system, we're looking at all aspects of the system. I would say, you know, it's hard for me to say yes or no, on that side. I think we're looking at the need in the marketplace. Right. I think on that infusion set side. I'd be curious to sort of hear your experience with that. I think in in some of the research we've seen, it's different sort of aspects where people would say they'd like improvement. Clearly. Extended wear is something that we're hearing a lot I know jdrf and others Groups are focused on that. But what areas are high on your list Stacey Simms 14:03 that they work better, that that you can push more insulin through them that they don't get kinked and they don't get occluded. And they don't need to know that they're, they're not as damaging to the skin that they're not as painful that I feel I could go on and on. But truly, I really think they're the weak link of pumping and you know that they even what was the one from BD for a while like it had a better flow, it didn't just float the bottom of the canula even to be able to rotate it there was one you used to be able to spin you know, that would go with that would turn you know, there's there's so much so sure, I'll be in a focus group anytime or recall me. Marie Schiller 14:38 I'm taking furious notes here to make sure I get all of this feedback because this is exactly what we need to hear, you know, and exactly what we're excited about. I think we just continue to feel that there are so much room for improvement on these systems. Albeit we've made a ton of progress today. But these are all of the nuances right then each of us I deal with every day and why, you know, the more innovation the better and space where we can continue to look at all of these elements and make progress. Stacey Simms 15:09 So let's talk about the pen system too, because that's very useful and very fascinating. The pen is, as you had already said, It is not just an insulin pen, it is part of a connected system. Can you talk a little bit about what that means? We've mentioned Dexcom. already. I assume you use your phone. You can see where you've been it recommends dosing, that kind of thing. Right back to my talk with Marie but first 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 is 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. 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 calm and click on the One Drop logo to learn more. Now back to Marie answering my question on what a connected system means and whether the pins help keep track of dosing as we expect. Marie Schiller 16:28 It does so as we mentioned, it's based on the the quick pen platform is is a core component of it. So if you look at the quick pen platform that we offer in forums and we have our current basic lar influence and humor log both in the half unit one unit and two units, and then we have our ultra rapid insulin that's under review today. So as in and I don't know what's your son ever on 10 before you move to pump, Stacey Simms 16:58 he was actually uncertain Because the dosing was so teeny tiny, and they didn't even have half units, but he was on quarter units. But we have since we use pens a lot, because it's a backup for him. If he gets to fly and feels like his infusion set isn't working, he'll take a shot. And he is also a little unusual in that we use. We use a long acting shot with the pump. So he does use a pen every day. Marie Schiller 17:25 Okay, well, then you're familiar with it. And I can share with you that I was a pumper for years. And now I'm back to two shots, as we all sort of go through those journeys, but what I was going to describe is when you're taking those informs, especially as you know, you're taking the long acting in the short acting. There are just some basic elements that we still don't have today, right? You're running out the door, you're trying to get your son to school or I'm trying to get to work that I did I just take that shot or not again, remember right and just some of the most the simplest aspects of being able to be like up there. If I took that dose, right, and being able to have that check in place, but there are, you know, as you move down that level of sophistication, most people on informer fire some level of glucose testing, whether that is blood glucose monitoring, or as we're doing with the continuous glucose monitors. So the idea is, is that you would have the informed data from the pen, you would have your glucose data, whether that's blood glucose or CGM data, and you would take that in integrate them into this diabetes...
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Kerri Sparling Interviews Stacey for "Children With Diabetes Celebrating Storytellers"
03/05/2020
Kerri Sparling Interviews Stacey for "Children With Diabetes Celebrating Storytellers"
The tables are turned this week as Stacey gets on the other side of the microphone. Kerri Sparling, writer of the long-running and popular blog SixUntilMe and now Children with Diabetes board member, interviews Stacey about her experience raising a child with type 1, what led her to claim "The World's Worst" title and much more. This is part of Children With Diabetes Celebrating Storyteller series. "There are some amazing storytellers in the diabetes community, and many of those folks have spent years honing their craft through blogs, books, and videos. Their stories of life with diabetes bring our community closer. Sharing stories helps make the journey with diabetes less isolated and instead paved with hope and camaraderie. Stacey was excited to be selected to be part of this storyteller series, and even happier to be interviewed by Kerri. read the transcript below or, of course, listen to the audio on this episode. ----- ----- ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcript: 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 One Diabetes available as a paperback ebook and audiobook at Amazon and at diabetes connections.com. This is diabetes connections with Stacey Simms. Welcome to another week of the show. I am so glad to have you along. As always, I'm your host Stacey Sims. This is a little bit of a different week around here because we released our regular Tuesday interview episode early. If you haven't listened to that yet, it was all about the corona virus and basic information that people with diabetes need to know. Thanks very much to Gary Scheiner CDE and the director, founder of integrated diabetes services. He is always a very calm and informative presidents. He also has a great sense of humor, but I wanted to get that show out. pretty quickly, because you know, of course, as the situation is changing, podcasting is tough to get breaking news out. But we wanted to make sure to get basic information from a good source out to the diabetes community, because I've been seeing and I'm sure it's only gotten worse, a lot of rumors and the beginnings of some panic. So I hope you listened to Gary or read the interview as well, because I put it out as a blog post with just that interview, as well as a transcript with the entire episode. And I hope you've been able to share that a lot of people picked up on it and I really hope it's helped give you some good information. We'll do more as the situation changes if we need to get more information out there. And then this week is a little different because I usually do a mini episode here, where I'm just talking about one topic kind of an editorial, but I'm going to be bringing you an interview that Carrie Sperling did with me now carry most of you know, wrote the long running blog six until me she retired that last year. She's doing a lot of great work with children with diabetes. This is the group that among many other things, puts on those great friends for life conferences, the big one in July every year, smaller regional conferences throughout the year. And they do a lot of really good work in terms of information, and community outreach. So Carrie is doing some of these interviews and I was so excited to be able to talk to her. You may have seen it, they put it out as a YouTube video and I will link that right up. You want to stop right here and go to the video instead of listening. It's the exact same interview except to get to see us and it made me realize I need to work on the lighting in my office. But the information I hope is good. We talked about what led me to write the world's worst diabetes mom a lot about you know, parenting Benny, my son diagnosed right before he turned to 13 plus years ago now, privacy issues Carrie has shared this in her own life. You know, how much do you share online? How much do you not? How do you decide that? And it was really a fun conversation. It's always a A little weird to be on the other side of the microphone. Unknown Speaker 3:02 It's not Stacey Simms 3:02 my comfort zone. But here we go. Anyway, here is the interview that Carrie Sparling did with me. Kerri Sparling 3:09 I am here today to talk to Stacey Simms Stacey Simms 3:12 about this, oh my goodness, Kerri Sparling 3:14 I had to climb on my bookshelf to get it down because I accidentally put it on the shelf that I couldn't reach without a stool. So thank you for giving me morning exercise for that. I appreciate it. But um, I Okay, let me make this more formal. I am very appreciative that you've taken the time to talk to me, and then we're going to broadcast this to the children with diabetes community and then share it through our different channels. So thank you for making yourself available. I know this has been chaotic, getting them on the line. Stacey Simms 3:38 This is what I get out of TV, when really we just need to stick to radio, but I really appreciate it Carrie. Thank you. Kerri Sparling 3:43 My pleasure. And so I want to jump right in because I've already kept so much of your morning already. So just if you could for a minute just introduce yourself to the community that may not know you already so they can get a sense of who you are, and then we'll get into the book. Stacey Simms 3:54 Oh, sure. So my name is Stacy. My son Ben. He was diagnosed more than 13 years ago, which is bananas, time just flies, but he was not yet two years old. He was diagnosed with type one when he was 23 months. I have an older daughter Her name is Leah. She is three years older than him over there four years apart in school and I say that cuz she's a freshman in college now and he's a freshman in high school. I started a blog about a month after Ben he was diagnosed at the time I was working as a morning radio show host I had been a TV anchor and reporter that's the I hate pictures. Because it's all the makeup and the hair and the you know, I'm looking at myself like my headphones are so big on this is not good. I distract myself. Um, but then I started the blog and then four years ago, I started a podcast and then last year I wrote the Kerri Sparling 4:39 book. That's that is awesome. And so so you've been sharing a lot of your family's experience and your personal experience with centered around diabetes, but going right into Stacey Simms, the world's worst diabetes mom. So this title obviously feels a little tongue in cheek because you are clearly very involved, clearly clever and also on top of things that are going on in your kids. In your family's health, so why did you call it this? Stacey Simms 5:03 The book title came about because I had actually been working on a parenting advice book about raising a child with type one for a couple of years. And it was really boring. And it was really like had been done before. There are so many great books, especially, you know, from a layperson perspective, there are so many great books by medical professionals that can really tell you how to better manage, and I didn't want to just say, here's our story, and here's what I think. And I was writing that book, but I wasn't, I wasn't jazzed by it. It was kind of just writing, you know, old blogs and my publisher and said, Oh, put your old blogs together. We'll just put those out. You know, that just didn't sound right. To me. No friends really resonates like old blogs like it. So I was in a Facebook group, having a discussion like I still do, I foolishly still go into Facebook groups because I want to help people and I get help to still and we had a disagreement and it got heated. I really I felt strongly that this was an okay way to manage and the person was so mean and said, you're gonna you're gonna kill your child you're you're terrible parent, you know really went there. And I just said, Well, I must be the world's worst diabetes Mom, you and I slammed the computer shut and I walked away and I was like, Oh my gosh, this is it not not even think about the book but this is who I am I want to talk about making mistakes. I want to talk about living with less fear. I want to talk about not always being a slave to your beats. Are you okay? Do you need a juice box? Unknown Speaker 6:33 Sorry, and beeping, then one of those days, but everything is fine. Thank you for asking. Stacey Simms 6:36 But I just wanted to, I realized in that moment that I did have something to say. And it wasn't just about the old blogs. And I went back I screenshot of the conversation because I thought well, maybe this guy is bananas. It's gonna come after me. But I also deleted it. Because we didn't need my anger out there either. It wasn't just Hey, I was ugly too. So I got past that and I thought let's talk about all the mistakes I've made because we Made a ton of mistakes. And it's not a question about being a bad parent or a good parent, sure, you're gonna make mistakes with your kids, whether they have diabetes or not. And let's use those examples of mistakes to talk about resiliency and confidence and, and I think my son is better off for all the mistakes I made. Kerri Sparling 7:16 I hope that applies to parenting outside of the realm of diabetes, because I'm not a perfect mom myself. And so it's reassuring to hear that stumbling leads to success, even if it's a modified version of the success you thought you were going towards. So I really appreciate that. And I also like the fact that it's not like here's how to be perfect by Stacey Simms, because that really puts people on their heels like you can't take advice from someone that you have on a pedestal it's always a lot easier to have a peer to peer conversation and that's why I feel like your book reads through it very a resonated for me and I'm an adult the diabetes not raising a child with diabetes but reading your perspectives gave me a lot of insight on maybe conversations that my mom and I never had or my email just think the cross Can you see that when it comes across You know, you're supporting the note cuz he's just some weird emails. But I just have a couple notes. I just wanted to look through this. But when I was reading through the book, there's the story of the first night that you guys are home with, with Benny. And, and it hit me really hard because I was thinking about my own two kids. And like I said, they don't have diabetes, but I was putting myself in your position. And it's so easy to be the person with diabetes from my perspective, but it is very, very different to be the person who carries just as much, but it's like 10,000 feet away for so much of the experience. And so do you think that it's important to have those stories shared like stories like yours and stories from adults with type one, so that we can kind of create a, an amalgam story sort of thing, like, why is that important? Stacey Simms 8:37 I think it's a great question, because it's it's so important to recognize that the two experiences run in tandem, but they are so separate, as well. Right? We're never really going to separate them. We can't pretend they're the same. So a person with diabetes is having one experience a parent of a child with diabetes is having a totally different experience, obviously tied to By diabetes, and I, you've already said, Oh, I think it's you know, it's worse to be the parent, you've implied that by something you said, which is fine. I mean, I almost every adult with type one I know, says all my mom, it was so much harder on her. Kerri Sparling 9:10 We're not saying it to make you feel better. We're saying, we believe that fun. Yeah, Stacey Simms 9:14 I understand. But I disagree, because I'm not beeping, and I can walk away from it. But at the same time, it's not a question of comparing, right. And I didn't mean to put you on the spot. I'm not saying that you're doing that. But I think it's really important that we see these experiences as equally important, but very different, but then tied together. So telling all of these stories. I'm hopeful that Benny, when he gets a little older, we'll look back and read it. And he knows what he knows the stories we actually shared that ahead of time. We talked about what I could put in the book, but I'm hoping that he'll see it and kind of think, Oh, well, that was not my experience, but I'm glad to know it. Kerri Sparling 9:50 Well, of course and you were saying it's not it's it's not about comparing them. I think it's about making a cohesive story around them like my low felt like this, but it looked and felt to my mother like this and meshing those two stories together together gives us a broader experience touch point. And I think that's so important, especially for like a teenage kid who might pick up your book and read it. And when they're in that angsty, angry part of diabetes, and they might be so furious with their parents to get your perspective on that might help segue a good conversation with their own parents. That's why I don't think this book is just for parents of kids with diabetes at cross collateralize is the whole community you know? I don't know. I think that's accurate. I'm gonna toot your horn for you that way. Stacey Simms 10:28 One thing I think it's really interesting to talk about is you mentioned like the not perfect parenting thing. And I think it's we're under pressure, regardless of diabetes is parents right? You can't win you really can't. But I also think it's funny when you look at a lot of parenting blogs and parenting writings. It's either I'm a perfect parent and you should aspire to look like this. It's perfect Instagram photos or whatever, you know, look like us do like us eat like us. Or you have the oh I don't know what I'm doing. Unknown Speaker 10:54 I'm so crazy on motherhood is that you know, I'm a man I look at my and I really that doesn't speak to Neither, Kerri Sparling 11:00 right we are middle lane. Stacey Simms 11:02 We are smart, we are strong. We are sometimes a mess. We are sometimes perfect. And I really I'm not. I know that sound like I was making fun. You know what I mean? If these archetypes, especially women we get put into, right. I'm a hard driving success story or I'm so clumsy. I fell into my man, you know, I mean, I hate that. So I tried to really in this book, kind of encapsulate, you know who I am, but who I think a lot of other moms are too, right. competent, confident, Kerri Sparling 11:29 but not having it all together. Now might be an important part to bring up the fact that I'm wearing normal clothes from the waist up, but sweat tears from the waist down. So like I think that sort of is the it's the template for that. They need you there we go. Wait, you you would actually skipped ahead to something I wanted to ask you about. Sorry. Should No no, that's fine. This is good, though. When you're using the questions, I know and I don't normally write my stuff down. But I'm organized today. Um, but yeah, we talked about when you first started sharing your stories, and Benny was home that first night That sort of stuff. And you used to write about Benny's personal experiences and yours. And as he's gotten older, and his experiences become more his, you've said that you've stepped away a little bit from telling his stories and have embraced. I can't describe it for you. But like, what, what's it like to decide to share x in the beginning, and what makes you transition to the y? Stacey Simms 12:19 I think it's such an important conversation. It was interesting in the beginning, and I do wish that I'd given my kids just a little bit more privacy by changing their names, or giving them nicknames. The problem for me was I was already on the radio. And we had a show where it was mostly political news. But we did talk about our personal lives a little bit. So my listeners knew when I started at that station, I had a one year old daughter. And then when I was working at that station, I was pregnant and then I had a baby and here's Benny in the hospital, you know, it was a different experience than just blogging. So it didn't really occur to me at the time and social media. Certainly what it is now isn't wasn't then what it is now. It was a different experience. But when you have a toddler, you have a baby, I mean, even going back, I was Careful at the time not to overshare I but as he got older you realize, you know people are reading this people are looking at this. There were there were only some experiences that I felt comfortable sharing and it wasn't just the good stuff, right? We shared things that things went wrong. I thought that was important. But I'm I'm on the record. I sound like a broken record. You know, I don't share my Sunday one. See, I don't have that. I don't like you know, do not share photos of your child in distress. You know, no hospital pictures. I wish I had pictures of him in the hospital and he was diagnosed for me. Sure. But you know, we didn't have our phones with us. 24 seven at that point, especially didn't have cameras on them, which sounds so ancient. Kerri Sparling 13:43 I mean, this is what it is right? Like when I was diagnosed with diabetes, I had to pee in a bucket to test it. So like things had to not a bucket. I mean, let's be realistic about this. But you know, things have progressed and with it the the conversation about what to share and not to share and so, I mean, you talked already about not sharing his anyone see? And I think personally, I am on the same page with you about that no one needs my personal data points because their mind in their personal, but that there's a broad spectrum of decision making processes around that sort of stuff. So what made you decide not to do that? Stacey Simms 14:14 Well, I think I'll just put a caveat in there, I think, to not mindlessly share, right? Sometimes it makes sense if you're trying to talk through something or get advice or share a situation or, or say, hey, look at this difficult situation we worked through and now we're celebrating I mean, just mindlessly is the word I tried to use about it. But what changed was when he was about seven, I think I read something by Moore McCarthy, who is a mentor of mine, and she's longtime blogger, author, I mean, yeah, faculty, you know, I probably saw her speak there and got this information, but she really encouraged me and others to think about it. And once I stopped to think about it, I realized there's no reason for my seven year olds health information to be on the internet. I'm not posting my weight and my cholesterol. And you know, my blood pressure. It's the same thing. We don't see it that way, right? But it really is. And that once I thought about it, it changed everything for me and I started sharing more, you know, great endo visit no changes, everything's on track or great endo visit. We had a whole conversation about changes we have to make sure sometimes like bad, you know, bad can be good when you get the information. Yeah, I love the finger quotes. Kerri Sparling 15:27 But I feel like that's an important part of it too, because it's not truly bad or truly good. There's a right Stacey Simms 15:32 dial up stations get better when you get away from the numbers. I agree. You know, you can you can have more in depth about how you're feeling and what advice you're looking for. And that sort of thing. So I've shared with friends when I've said old I'm upset about this, or can you help me with that? That's different. Kerri...
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The Coronavirus and Type 1 Diabetes - What We Need To Know
02/28/2020
The Coronavirus and Type 1 Diabetes - What We Need To Know
There's a lot of information about the Coronavirus but there isn't a lot out there specifically for people with diabetes. This week, we're releasing our weekly episode early to bring you what you need to know. Stacey talks to CDE Gary Scheiner, who lives with type 1 diabetes. They go over everything from protecting yourself or your child (spoiler: not much different from what you'd do without diabetes), having a good sick day protocol in place in case you or your child does contract the virus. They also talk about about how we can be ready for in terms of social disruption. In other words, should we be stockpiling supplies? Gary says no and explains why. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (please excuse grammar, spelling, punctuation) 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 Welcome to a slightly different episode of Diabetes Connections as always, I am your host, Stacey Simms, but this week is going to be a little different because I just want to focus on one topic. we are going to talk about diabetes and the coronavirus. There is a lot of chatter online. There are a lot of concerns. I've taken a lot of calls and private messages. I'm sure you have to you know from well meaning family and friends who may not even have diabetes. And I thought rather than address it piece by piece, we would least start the conversation. I'm sure it will not end here. But we'll start it by having a really grounded and factual conversation with a diabetes educator who can address everything from what the virus itself means for a person with diabetes, what precautions you may want or may not want to take what's real, what's fake. We're also going to be talking about if there are societal disruptions, right? They've been talking about if stores are closed, if schools are closed, what should we be thinking about now, in terms of medical supplies, let me do a brief explanation of the corona virus I know most of you already know. But just in case you haven't heard of basic explanation, then we're going to get right to the interview with a certified diabetes educator and person with type one, Gary Scheiner. Coronaviruses and there is more than one they are a large family of viruses. And it can be it could be the common cold that they cause it can be much more severe disease. The reason we're talking about This one in a different way is because it is a new strain. It hadn't been previously identified in people. As many of you know, it started in China, but it is spreading from person to person, somebody who's actively sick can spread the illness to others. The first case in the United States was reported January 21, the first confirmed instance of a person to person spread within the United States right, which is different from someone traveling here with it was reported on January 30. You can find out a lot more from the CDC. I will be linking up the information page from the CDC and some other sources at the episode homepage at diabetes connections. com. I'll also let you know that a couple of days after the episode airs, I will be working to turn it into not just a transcript but more of a blog post so it's easily shareable. You know, a lot of people don't listen to podcasts, but they will read a blog post and I'd really like you to be able to share this with as many people as you can. Media outlets are of course All over this but very few are talking about what it means for people with diabetes. So let's get to it. My guest this week is Gary Scheiner. He is the owner and clinical director of Integrated Diabetes Services, a company that specializes in remote consulting for people who use insulin and we'll talk about how remote consulting and remote services may play a part in the response to the coronavirus. Gary has also been living with Type One Diabetes since 1985. And in 2014, he was named as the Diabetes Educator of the Year by the American Association of Diabetes Educators. Gary is always a wonderful source of calm, reliable information here on the podcast. And he really came on with very short notice and I appreciate that very much. One more quick thing. I'm going to jump back in at the end of the episode after the interview, I want to talk to you briefly about media and how you consume media, especially in a time like this. I worked in local TV and radio news for 20 years. So just some advice and some things to look out for. All right, here's my conversation with Gary Scheiner. Stacey Simms4:07 Gary, thanks for jumping on with pretty short notice to talk about this. I really appreciate it. Gary Scheiner 4:11 My pleasure. Stacey Simms4:12 I don't want to downplay anything I know I'm here to get the information in. But I have to say, I'm really concerned with what I'm seeing online. Are you hearing from people who have have these concerns in the diabetes community and, frankly, getting frightened? Gary Scheiner 4:27 Yeah, I mean, with good reason. This is a it's a pretty serious viral infection that's spreading around. It's not that much different from other viruses like the flu. And you know, the way we contain it and control it and prevented for that matter are very similar. But when people do get it, it's a tough one to fight. You don't have effective ways of treating it. Stacey Simms4:48 So we're going to talk a lot about diabetes here. Obviously, that's what we're all about. But let me just start by defining a few things. Do people with diabetes in general, get more viruses. Can you speak to that? Because I've been told time and time again, Type One Diabetes is an autoimmune disease, it doesn't mean that your immune system is suppressed, Gary Scheiner 5:09 if anything, our immune systems have that hyperactive, right, okay. But yes, people with diabetes generally are higher risks for all kinds of infections, both bacterial and viral, but it really comes down to the degree of glucose control that a person has. There are certain things that impair proper immune function and one of those is high blood sugar. chronically elevated glucose levels can impair immune function of the other things are things like lack of sleep and a very poor diet and very high stress levels. But for someone with diabetes who's not managing their glucose, well, their risk for infection is certainly increased. Stacey Simms5:50 Okay. So if someone with a higher frequency and elevated agency who is not getting for whatever reason, you know, access to healthcare or even their own education, if they're at higher risk What about people who have lower agencies who what I guess we would call generally better controlled or well controlled? Are they still at more risk for getting viruses, Gary Scheiner 6:09 it's less of an increased risk. But you have to consider glucose variability in the equation as well, which is a stress on the body, it seems to cause inflammatory responses. So you know what we're talking about. You can have a beautiful looking a one c but but have a lot of peaks and valleys, highs and lows throughout the day. And that sets us up for all kinds of acute and chronic health problems. Stacey Simms6:35 Okay, well, let's cut to the chase though. If I have two kids. I have a kid with a 7.5 A1C, for example, and I have another child who doesn't have type one at all. Do I have to lock one in the house and the other one is going to be okay? Gary Scheiner 6:46 Well locking her in the house might be a good idea anyway (laughs). I mean, yes, she is going to be at a little bit of an increased risk. We see the risk of these types of problems almost go up exponentially when the A1C starts getting up into the 9 or 10 range and with an A1C in the 6 or 7s, the risk is slightly increased. I wouldn't say it's dramatically higher than in someone without diabetes, but there is some increased risk. The other issue is managing the glucose if you do get sick, which becomes more challenging, but even more important, because when glucose levels are elevated, you're sort of aiding and abetting the infection that virus or bacteria has a lot of fuel to grow off of. So you're feeding the enemy in a way if your blood sugar is poorly controlled, when you're sick, running a lot of high blood sugars is going to extend your recovery time and cause your symptoms they become that much worse. Stacey Simms7:44 Well and that's tough to begin with because, at least in my personal experience, when my son gets any kind of illness, his blood sugar goes up. Gary Scheiner 7:51 this strategies for managing it though, teach most of our patients about self adjusting their basal insulin doses weather right A pub or shots, ramping up the basal insulin is a very effective way to combat the insulin resistance that's caused by the illness. Stacey Simms8:08 I guess step one, then is with Coronavirus or any illness have a sick day plan, right? Call your health care provider, call your endo if you don't have a sick day plan of attack, like you said, even raising basal rates doing other things. Yeah, Gary Scheiner 8:21 yeah, we try to it has to be customized a little bit depending on what kind of treatment every patients receiving. In the certain tenants, though, that applied almost everyone who's on insulin, the insulin dose is likely going to need to be increased, especially if they start noticing elevated blood sugar. ketone checks become pretty important. It helps us figure out the severity of the illness and the magnitude of insulin increase that's going to be required. Hydration is extremely important as well and people with diabetes are more prone to dehydration when they're sick and then someone without diabetes and adequate nutrition. Also, the body still needs energy to combat the illness so you don't want to starve a person when there's Yeah, they still need that. I think parents used to refer to this as the BRAT diet it's just easily digested simple foods that you don't have to work too hard to break down. I don't remember exactly what brats Stacey Simms9:18 I think I might get it wrong. I think it's bananas rice, apples toast, but I might have made that up. Gary Scheiner 9:24 Maybe apple sauce, Stacey Simms9:25 sauce, apple sauce Apples seem a little yucky when you’re sick. Gary Scheiner 9:29 we tell people you know all those foods they avoid because they spike their blood sugar. Those are the things you want to eat when you're sick. You know, the soft fruits, cereals, things like that. Oatmeal, things that just digest quickly and easily just to lessen the load on the body Stacey Simms9:45 with Coronavirus itself. In terms of sick day, do we know enough to know how it might affect people with diabetes yet? Gary Scheiner 9:53 Well, it'll it'll affect them just like it affects a person without diabetes, but in a person with diabetes It's gonna cause the glucose levels to rise as well. But in somebody with diabetes and without you're going to see some intense inflammation of the respiratory tract. One of the unique things about it compared to some other viruses like the flu is it can cause some severe shortness of breath which we don't always see with with other communicable common illnesses. So that's something to watch for. The preventive measures are the same. We do we would do the same things to prevent Khurana virus as we would know the common cold and the flu. No frequent hand washing is a very important thing. You know, I tell patients to be a bit OCD about your handwashing be very compulsive about that. Get a flu shot, because you can prevent any form of the flu it anytime that's beneficial. Be very careful around people who have signs of respiratory illnesses who are coughing, sneezing, etc. Keep your distance or just try to be very cautious about physical contact with them. extra hand washing Stacey Simms11:13 do those masks that people are buying do those work I've heard mixed results Gary Scheiner 11:18 they will only work if you're within coughing vicinity of somebody who is contracted the illness in general they don't work I mean walking around the airport cetera with these masks on is going to do virtually no good. These airborne germs can still get into your nasal passages and into your lungs and spread from there. So in general, the masks are not a very effective preventive option. It's more than the traditional stuff. You know the handwashing get your flu shot. Try to avoid indoor air too much research related air is no good to be in a humid environment that also is beneficial. If your house is dry especially in the wintertime use a humidifier. That's the first place where germs can penetrate into the body is the nasal passages and if they dry out due to dry air, you're kind of opening the door and marshaling a germs into your into your system. So you humid environment does help. Stacey Simms12:19 You mentioned handwashing, do hand sanitizers work at all, Gary Scheiner 12:22 they're a little bit beneficial, but just washing with soap and water is generally sufficient. It may not be convenient to do that anytime, anywhere. So carrying hand sanitizer after you've been like at a meeting, shaking hands, etc is a good idea. Even though places like the grocery store where your hands on the cart and you're touching a lot of things, using a hand sanitizer, there is a good idea. Stacey Simms12:48 One of the things that's been reported and this may change as we learn more and more about the coronavirus and and any effects it has here is that we may see more of a social and a societal disruption Then we do run the risk of actually contracting it. In other words, there may be times when your municipality says, you know, stay home, or they ask people not to travel or there's disruptions in trade. So one of the things that I've heard from several people, and again, this is something we are talking about, and that's something that has been announced. So as you listen, please take it as we're discussing it here as a potential should I be stockpiling diabetes supplies? Gary Scheiner 13:26 I just got off the phone with a patient in Cincinnati who asked me the same exact question that you brought up, should I be stockpiling insulin and strips and sensors and this and that, and right now, the answer is no. You really don't need to do that. The pharmaceutical companies are, manufacture things under very sterile conditions, and even their distribution channels handle things in a very sterile way. So you should be fine, as far as getting your supplies and getting supplies. That are guaranteed to be safe and clean. So you really don't need to be hoarding supplies at this point. Order response is kind of dangerous, because you may cause shortages for people who really need things. Stacey Simms14:15 That always worries me because that's exactly the problem, right? We think, Okay, I'm going to help myself, but in doing so you might wind up overdoing and hurting others. So just to clarify what you said, again, this is from social media, Gary, so I apologize for even bringing it up. But I have seen it I know others have as well. It's been these things have been circulating now that you know, we get so much of our medication from overseas and cheap stuff from China, that now you have to be scared of your medicine because of the coronavirus. I have no idea if there's any truth to that. I hate bringing up something right. We can't verify it, but I couldn't think of anything diabetes related that we can't track to where it is manufactured. Gary Scheiner 14:53 Right. Now the virtually everything we're using in the states is manufactured here. And you have to also consider The Coronavirus like any virus, it's a living organism, it has to be attached to something that is providing it with some form of nutrient plastic packaging and pills and bottles are not going to provide nutrients that keep a virus alive. So generally speaking, you don't have to be concerned about contamination that way. Stacey Simms15:21 Well, I think we, it's a great point, because I think we do have this sense when these scares come up, that these germs are catching a ride, and just, you know, hop it in the storage container. So I know it's kind of funny to talk about it that way. But you know, that's what I think a lot of us we have these misconceptions, so thank you for clearing them up. I don't remember who it was SARS or h1 and one. But when we've had you know, scares in the past, that's when a lot of grocery stores decided to test that order in advance, use your phone to order groceries and then drive up and pick them up afterwards. They did that because they were concerned that people would not go to the grocery store. So you don't know what's going to come out of these things. Because, you know, and now people do that because It's just super convenient and nobody wants to wait. Gary Scheiner 16:02 Right. It's the same reason we've been doing. Providing tele health care people for years now is its convenience. It's also it's it is a little bit safer, you know, going out and being in an office with a lot of other people. Yeah, you knows what you could catch. Stacey Simms16:18 You mentioned earlier at the very beginning of this interview, that people with diabetes you If anything, the immune system is overactive. And I know that, as you said, there are risks there are, especially with higher agencies, but does that overactive immune system do anything that we haven't talked about when it's hit with a virus like this? Gary Scheiner 16:38 Not really, it overacted in a very selective way. Okay. Yeah, it's only targeting those beta cells. It would be nice if it could attack viruses and bacteria we would be super humans. Stacey Simms16:51 That's what I was hoping you were gonna say that sometimes, you know, Gary Scheiner 16:54 humans who require insulin that's that would be great, but we don't quite have that level. Whole superpower just yet. Stacey Simms17:03 Not to say for stockpiling, but when we talk about sick days, is there anything that you would recommend people have on hand? I'll give you an example my doctor especially when it was very little would recommend we have full sugar popsicles, because we never kept those in the house. You know, not an a sick day, but they were great because a little kid who doesn't want to eat but needs insulin for ketones could do that. Anything else come to mind? Gary Scheiner 17:27 Well, something that I keep around is is something like Gatorade, or with kids Pedialyte, just beverages that have a low sugar concentration that are easily absorbed easily digest that even if somebody has an upset stomach is nauseous is weak, it those things provide some electrolytes. They provide a little bit of carbohydrate and fluids which is critical. So that's that's a good thing to keep around. It's pretty accessible. You could walk in any convenience store and pick that sort of thing up but other things Things like ibuprofen acetaminophen is good to have around in case there's fever. If they're Imodium is a good product for for diarrhea, just those kind of things are are helpful Keto Stix. Most people don't think they'll ever need them. But when you're sick, it's very important to...
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Minisode #9: Hey Doc! Listen up!
02/27/2020
Minisode #9: Hey Doc! Listen up!
Have you ever had a doctor give you a "wake-up call?" or try a "scared straight" tactic? These techniques - and a lot more - blew up on Twitter recently. Stacey noticed that it also seemed that the doctors andhealth care providers who weighed in weren't interested in listening to diabetes advocates online. What's the disconnect all about? Full transcript below ----- 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 on Amazon as a paperback ebook and audiobook at Diabetes Connections.com. Announcer 0:15 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 Welcome. This is one of our mini episodes, shorter episodes that I put together starting at the beginning of this year, just when I have something to say, news to share or anything that doesn't fit in the traditional longer format interview show that we do every week that drops on Tuesdays. I am your host, Stacey Simms, and I want to talk to you today about well, I really want to talk to your doctors about something, but we'll get to why and maybe how to share with them. I want to talk to you about what are doctors think of diabetes, and I don't really mean our endocrinologists Just to hopefully know what they're talking about and stay up to date. I mean, the other doctors that we see or we bring our children to pediatricians, the doctors, the dentists, you know what I mean, right? There seems to be this disconnect between what the diabetes online community which doesn't speak in one voice, I get it. But what we have learned over the years and what we talk about all the time, in terms of there's a hashtag language matters, right? There's this disconnect between what we as patients want, which is no blame and shame. Work with me, help me with resources, give me the information, let me make my decisions. And the physicians who many many, many times want to scare patients straight, you know, we're gonna give them a wake up call. We're going to show them how bad they're doing and that will make them do better. And this disconnect played out on Twitter recently and I want to share with you how it went and then I would ultimately was shared at a medical conference. Before I jumped right in though I do want to Say with those doctors who are you know, in the scare em straight kind of school, I really do think the intentions there are good. I don't know any doctor who wants their patient to walk around with a 14 A1C, you know who obviously isn't feeling well and is going to be in poor health. I don't think any doctor wants that. The question is, why don't some doctors listen to their patients more? Why don't they seem to believe us when we tell them what we think works and doesn't work. So that's my perspective. today. Let's go through what happened. There's a guy on Twitter. His name on Twitter is @DGlaucomflecken. He says he's an ophthalmologist, a comedian, and a speaker. On February 17. He tweeted, “Want to know why diabetic eye exams are so important. I can take a 28 year old with an A1C of 14, show her a picture of a normal retina, then a picture of her diseased retina. Then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.” And he posted the pictures that he had just talked about now. Kind of an innocuous tweet a couple of years ago, I probably wouldn't have thought anything of it. But and I was not alone here. There were some telling language in this that made me want to speak up. I'm going to link this up if you want to go through the Twitter thread. It is ginormous because a lot of people chimed in as you can imagine. I'm going to read a few tweets here. I'll just read first names from the people who tweeted this out. So these are the advocates who tweeted back Megan wrote, “As someone who works in eye casualty for a while and has type 1 diabetes. I have heard doctors have similar conversations. I then also seen patients walk away upset and distressed. Living with diabetes can be filled with anxiety. I find it best not to feel that scare tactics aren't always the best understanding and empathy for diseases hard to manage may be better.” Melinda wrote, “Did you ask her if she could afford her insulin and supplies? If she had a support network to encourage her or did you just decide to be Dr. Judgy Pants?” Melissa wrote, “Do you know if she went to her car and cried from helplessness like I used to after I exams with an ophthalmologist who had This kind of bedside manner? It took some time to find a doctor who could help me create a plan instead of send me off alone and frightened.” And then Mike wrote, “This mentality scared me into doing something better briefly as a teen. Soon enough, it led to hopelessness and years worth of higher A1Cs until love, actual good doctors and peer support inspired me to change how I lived” I wrote “Curious if there are any long term studies showing this is effective, other than the patient saying, Wow, that's a wake up call. What is it like for them? 10 years down the road? Did it help hurt make no difference?” And I actually wrote “not being sarcastic, genuine question” because you know, Twitter, but then the ophthalmologist chimed in back. And during all the time these advocates are saying these things, other doctors and other people are telling us how wrong we are. So the original ophthalmologist chimes in with, “I'm just showing people their own body part. I've never had a patient get upset with me for showing them pictures. I have taken up their own body part. I don't need a study to convince me to keep doing that.” Another doctor said “Patients Like pictures. We do the same with coronary angiograms. In cardiac patients, a picture's worth 1000 words, also puts in their minds the idea of the now and the potential future, good practice.” Another person a medical resident wrote, “I like it, it's hard to convince some patients without symptoms that keeping an A1C down to an arbitrary number is worth the effort of diet, exercise and expensive meds. This could help motivate many patients.” And then he writes “Also, it's not the author's job, the ophthalmologist job to make sure the patient has all of the resources needed to adequately treat the patient's diabetes during their brief eye exam. That's our jobs as PCPs.” So that's what he's going to be or may be already is I can't really tell from his Twitter bio primary care physician. Okay, so, literally, this went on for days, I kept getting notifications, because I kept chiming in, like, Are there studies like, oh, let's talk about this, you know, and, as you can imagine, it got pretty nasty sometimes. I mean, there's jerks in every Twitter thread on every side, so we're not going to talk about that. We're going to talk about the discussion and the disconnect because this is that fascinating. Most of the doctors really believe this is a good thing, I'm so glad that that primary care physician chimed in and said, “well, it's really not your job as an ophthalmologist to give them any resources or do more with them.” And this original doctor kept chiming in and saying, “No, I really do try to support patients.” It was just one tweet, you know, we don't know what he's really doing. So maybe he is, you know, talking to them more. What about your experience? In my experience with those other doctors, right, not the endocrinologist, the eye doctor, the dentist, even the pediatrician with Benny, they have no idea what diabetes takes. That's okay. It's not their specialty. I don't mind that. They don't know. I mind when they try to tell us more than they know. Right? Like, I had an eye doctor once Tell me, Benny was not in the room, he asked, “how long has he been diagnosed?” 12 years. I think at that time. “Well, you know, 20 years is when the complication starts showing up in the eyes.” And I actually said out loud because I'm a pain in the ass patient. And I said, Really? What was the last time you actually read anything in a medical book about diabetes? I tried to be nice, I said it kind of nicer than that. But it's it really, when did you learn about type 1 diabetes? And he said in medical school, and I said, and when was that, right 25 years ago? And really, when were those studies done? Right? If you're looking at a study from 25 years ago, that study probably followed people living with diabetes who had been diagnosed at least 10, if not 20 years before that. So your data is kind of outdated. And we know if you're a longtime listener of the show, you know, from studies like the EDIC trial, and many others, that eye complications, along with many other complications are way down and almost non existent for people with diabetes, who have access to good care and insulin. I mean, we know there's a whole other world out there, but we know these complications when care is given our way down. And whenever I talk about complications, I always want to say complications can happen even with the best care with diabetes. I mean, look at life - complications can happen with anything. So we try to do the best. We can see just other factors, you know, genetics, environmental, what have you. But with eyes in particular, I've talked to two endocrinologists in the past year, who say when they see a patient with any kind of eye issue under the age of 40, with Type 1 diabetes, they call everybody who's nearby, because they never see it. They want everybody to come in and identify it and look at it and see what the poor patient, but see what it really is all about, because they never see it anymore. So my little conversation with that eye doctor, hopefully made him rethink a little bit about how he talks to other people with diabetes. I've had the same conversation with my pediatricians when I feel like educating because sometimes it is absolutely exhausting. And I had to back away from the Twitter thread because of that, that it is exhausting to keep educating and educating. You don't know everything about type 1 diabetes, you're not a specialist. Thank you for pointing this out. But what can we do about it? What's the point? Why would you say you're going to be in trouble? I'm going to give you a wake up call. I'm going to scare you straight. Why would you say all those things Thinking the outcome is going to be positive? If you're aware of a study that talks about these things, and I was pilloried on Twitter for suggesting there could be a study, what would the control group look like? people who never get good health information, people who are never shown their bad eyes, or that they're going to lose a limb or blah, blah, blah, right? No, look, I don't create scientific studies. But you don't have to be a genius here. But why couldn't you something really short, that just gives you a taste of what we're talking about here? Do a six month study, right? Pick an age group to a six month study your 25 year olds with Type 1 diabetes, everybody gets the same exams, but your feedback is - you're doing terrible. You have to be nervous. We're scaring you straight, kiddo. It's a wake up call. Now go get better. And the other one is, Hey, I really feel like we could do more together. Well, how can I support you? What are the challenges you're seeing that are creating these issues with Type 1 diabetes, there may not be anything I can do to help but I understand that you're probably doing the best you can because type one is really difficult. And then the other one, the third part of the study would People who are told here are your test results. See you next, right with no emotional kind of feedback. Why couldn't you do a quick study of that and see what happens in just six months? My guess is you would see really interesting results. So better minds than me, thank goodness picked up on this and actually put it in a presentation at ATTD, at the international conference for advanced technologies and treatments for diabetes. This is the conference that I just talked to Kevin Sayer. That episode just aired a couple days ago. This is where he was in Madrid, Spain. So this is a huge international conference and this Twitter thread made it to a presentation, which shocked me. What shouldn't have shocked me is who was doing the presentation. This was the hashtag talk about complications presentation by Renza Scibilia and grumpy pumper Chris, who we've had them both on the show separately to talk about this and other issues. But this talk about complications slide that made its way to the presentation showed the original a tweet from the doctor, the ophthalmologist comedian, and they actually blacked out his name, which I didn't do here, because Twitter is public. And they showed the original tweet, you know, very effective wake up call. And then they put another tweet next to it. And I think that this is a hope that physicians might consider saying this instead. So let me read you the original tweet again. And then the one that they suggest. So the original tweet, “Why are diabetic eye exams are so important? I can take a 28 year old with an A1C of 14 show her a picture of a normal retina, then a picture of her diseased retina then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.” Here's an alternative to saying that “Diabetes is really tough, and you're managing as you can right now. Thank you for coming to see me eye screening is really important. We know having a higher A1C increases the risk of diabetes related conditions. Let's work together to try to reduce the risks.” Now I know some of you and maybe hopefully if you got your physician or not Doctor or dentist or somebody else to listen to this episode, it might sound very, you know, Kumbaya and woo woo. And, you know, let's work together. But I'm telling you, as the mom of a kid with type one, as a person who sees doctors for her own conditions, it is so much more helpful to hear this than to hear the other scary, effective wake up call. I mean, you know, when I go to my doctor, and I say, I'm really upset, I've been trying hard and gaining weight, you know, what I don't want to hear is “You're really fat. And we know that being obese can help lead to health complications, and higher increase of cancer. Because you know, you really want to watch out what happens, you have this risk and your family and blah, blah, blah. So just stop eating desserts.” What would be really helpful is, “Yeah, boy, it's really tough. I can see that your whole life, you've been a healthy weight. You're an active person who knows how to eat well. What's changed in your life in the last couple of years? How old are you? What is your metabolism doing? Let's sit down and talk about how things are changing maybe so that you can find a plan that might help you change” I mean, I just came up with that at the spur the moment, but it's so much different to here. Let me help you. And let's figure out what you can do to make this better rather than let me blame you and shame you and scare you. A lot of people tune that out. And if they're scared, they don't want to do anything to make it better because they lose hope. I really hope that some healthcare professionals who saw this on Twitter took a moment to stop and think about it. I know a lot of them responded. And remember kind of insulting frankly, calling the diabetes advocates, trolls and one person called the bats. I don't know if that's a UK thing, or I don't know what that was all about. And there were some people who got kind of nasty, as I said earlier, but I really hope that people who saw this conversation, maybe had a different conversation with the next patient that came into their office, maybe a person with diabetes, who saw the conversation had the words now to tell one of their health care providers. Look, this isn't helping me. I need you to speak to me in this way. Which is really, really hard to do. I will say before I let you go here that a lot of the physicians piped in with Well, my patients never react poorly when I give them this news, they all seem to appreciate it. Do the doctors not know that we talk to them differently than other people? Do doctors not know that some people like get dressed up to go to the doctor will really make sure that they are well groomed. I mean, it sounds silly, but you know exactly what I'm talking about. Right? doctors don't realize that we go to our cars. And as Melissa said, in that tweet, sometimes we cry, we call the friend and say you won't believe what happened to me. Or some people will tell a nurse things that they won't tell a doctor or they'll tell the front receptionist and they'll get the anger and so the doctor, people don't tell their doctor unless you're me and you're a pain in the butt. Very few people tell their doctor, hey, you're wrong. Or I don't like this. Or even Can we try something different? People don't talk back to doctors. And the fact that they don't know this… Come on, guys. You got to be better. You got to think about it. What do you think my way off base here? Were you part of that? Twitter chat, did it make you mad? Did it make you think? Let me know. You can always email me Stacey at Diabetes Connections. com. I'll put this in our Facebook group as well Diabetes Connections of the group on Facebook. I'd love to keep the conversation going. If you're a physician who has listened to this long oh my gosh, thank you so much. I cannot tell you how much we appreciate it when you take a moment to consider the other side of the stethoscope for lack of a better word. Let's keep this conversation going. Of course, if you think I'm wrong, I am the world's worst diabetes mom, I can live with that. And you can find out much more at the website diabetes dash connections.com. Please subscribe to the show on any podcast app or just keep listening through social media or however you found us. We appreciate that we're not going to tell you where to listen. We just hope you keep on tuning in. I'm Stacey Simms, and I'll see you back here next week. Unknown Speaker 15:57 Diabetes Connections is a production of social Stacey Simms media All rights reserved all wrongs avenged Transcribed by https://otter.ai
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Dexcom CEO Kevin Sayer Answers Your Questions
02/25/2020
Dexcom CEO Kevin Sayer Answers Your Questions
This week, catching up with Dexcom CEO Kevin Sayer – overseas at the ATTD conference. We talk about everything from a G7 update, new partnerships, in-app notifications and those sensors that you’ve probably heard about getting stuck. We also talk about competition, customer service and a lot more. In Tell Me Something Good, a Miss America contestant with T1D has pretty stellar week – and it has nothing to do with her crown and sash.. this is about engineering . 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 (we're in beta so please excuse grammar, spelling, punctuation and the fact that AI can't figure out Dexcom speak) 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, catching up with Dexcom CEO Kevin Sarah overseas at a big diabetes Technology Conference. We talk about everything from the g7 new partnerships in app notifications. And those stuck sensors that you've probably heard about or seen on social media. Kevin Sayer 0:45 There's a freak out factor but Let's face it, if that's your last sensor, that's not fair. And that's not right. So we noted it, we've seen it, we've read it. We've done everything we can to mitigate it. I'm very comfortable we’ll see this come down. Stacey Simms 0:57 We also talk about upcoming CGM Competition, customer service, direct to Apple Watch and a lot more. in Tell me something good on Miss America contestant with Type 1 diabetes has a pretty stellar week and it has nothing to do with her crown and sash. This is about engineering. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Welcome to another week of Diabetes Connections. I am 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, just before he turned two. That was more than 13 years ago. My husband lives with type two diabetes. I do not have diabetes. I have a background in broadcasting and local radio and TV news. And that's how you get the podcast. longtime listeners know what the show is all about. letting some new people know because let's face it anytime we talked to dexcom or talk about anything New technology, we get a lot of new listeners. So welcome! If you've come for that, I hope you stick around and go through our almost 300 past episodes. Now, you can find everything at Diabetes Connections. com, we have a very robust search, there's the regular old search box on the upper right hand side. Or if you click on the episode page, there is a way to sort them by category. So if you want to see all the technology episodes are all the ones with athletes are all the ones about family or advocacy, you can sort them that way as well. Before we talk to Kevin Sayer, it is important to point out that as you heard the very top Dexcom is a sponsor of this show, and has been for a few years now. Our agreement means I talk about them in a commercial, which you will hear later on the show. But it doesn't mean that I don't get to ask hard questions. I really try to serve you as you listen, I try to serve you first. And if I'm not doing that this show doesn't work ethically. It's really important to disclose these things. And I always get upset when other either podcasters or bloggers or speakers don't do that. If you're a longtime listener, you understand how it works around here. Hopefully, I am doing a good job of serving you. But just to be clear, the advertisers in the show pay for the advertisement. And I believe in them, and I'm glad they're here. But they do not tell me what to say, in the show anywhere else on social media, or when I write a blog, that sort of thing. It's not that kind of relationship. So we're talking to Kevin coming up in just a couple of minutes asking your questions. I took a whole bunch of them from the Facebook group. We do have a Facebook group, it is Diabetes Connections, the group, very original, but very easy to find that way I thought, and that's really the best way if you want to ask these newsmakers questions I usually ask in the group and you can always contact me that way. That's coming up in just a minute. But first Diabetes Connections is brought to you by another sponsor, 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 is 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 healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, take 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 calm and click on the One Drop logo. My guest this week is Dexcom CEO Kevin Sayer. He is joining us from the International Conference on Advanced Technologies and Treatments for diabetes, which this year is in Madrid. So as we're talking to Spain here, please pardon any glitches or weird phone sounds that might pop up but hopefully all will go away. Kevin, thank you so much for joining me. I appreciate it. Kevin Sayer 5:02 Oh, thank you, Stacey. It's good to be back again. Stacey Simms 5:05 All right, let's start with the news that has already come out of the conference. And that is this official partnership with Insulet. With Omnipod. Can you start by talking a little bit about? And I'll be honest with you, I'm a little confused. I they're already in clinical trials for Horizon. I thought this agreement was a done deal. Tell us about the agreement with Insulet. Kevin Sayer 5:23 Actually, we've been working with Insulet since 2007. This is a long time relationship. And most of our work in the past was then under the form of a development agreement to jointly develop products together. The announcement this week is the culmination of all that development work over time to basically say, look, we've entered into an agreement whereby we know how we're going to commercialize our joint systems. And also, as we have entered into these development agreements with our partners, we typically do it one generation of technology at a time, we made the g7 system available to the Insulet team as well. So once they get a rising launch with G6, as the G7 system gets ready to go, it will be will be able to migrate over to that system as well. So that that was the purpose of this announcement and the other. You know, the other reason for it, there is so much going on in the interoperability world right now. We index coms as well, it's important that everybody knows that we have these relationships. And this relationship is very close and near and dear to us. So we therefore thought the announcement was good on something we have been working on for a very long time. Stacey Simms 6:29 When we look at interoperability, you've mentioned already G6, G7. Can you just take a step back and give us a little bit of an update on that so Insulet will go with their horizon, which is not out yet. That'll be g six and G seven tandem with control IQ also g six mg seven Kevin Sayer 6:50 Tandem has access to G6 right now. We've not yet signed a G7 agreement with them, but we'd expect to do that and then they're very near future. We've also signed a relationship with Lily and their connected pens and their platforms, whereby they'll have access to G six and G seven as well. We have several other smaller relationships with some of the smaller pump companies or others where they have to six, access not a lot of g7. At this point in time, we have to look at that strategy over time and decide what approach we're going to take with partners. The interoperability world creates some very interesting business scenarios, which I wish I knew the answer to all of that, but it ranges anywhere from let's say, one person and go or two people and just work with them to maybe a few or just open it up to everybody. And I think it evolves over time. For us right now. We think it's important that we support certainly as many as we can, but offer even a heightened level of support to those who are going to have commercial offerings in the near future as speaking towards Tandem and Insulet. In particular, the control IQ uses g six and we read certainly very good things about that is that since we've been out there. And so we'll work with them all. This is going to evolve over time. All the answers are available. Sure. Stacey Simms 8:07 Okay, so let's talk about control IQ quickly, because that's been in the news quite a lot lately. We just started it about three to four weeks ago. It's been working very well for my son, but Dexcom owns the algorithm, but used to be called or maybe still is type zero. Kevin Sayer 8:23 So let me give a little clarity on the fundamental or the underlying science and the calculations behind the algorithm are in fact, developed a type zero and owned by Dexcom. Tandem has filed that as their controller. They have done some user experiences some modifications as to how it is integrate into their pump, but the fundamental algorithm is owned by Dexcom. And type zero. That's correct. So the sensor in the algorithm driving it are Dexcom properties. Stacey Simms 8:49 This is a little bit more esoteric than I expected to get in so quickly here, but what's it like being in the algorithm business and Do you have plans to perhaps get some other algorithms in Your tool kit, if you're like us, not the only one out there Kevin Sayer 9:02 know when we've looked at those, and we love our team in Charlottesville, we have some decisions to make there too. So what we're going to do long term with the algorithm and how available we're going to make it, it is a great business opportunity is a great skill set for us to have as well. With that team in Virginia, we've learned a lot about our sensor, their opportunities to take the science has been developed for automated insulin delivery and apply it to decision support for those who really don't want to use a pump all the time that we could possibly provide some good decisions along the way that would help them better manage their diabetes in the manner that they want to. I think there are a lot of opportunities to do that here. What we're going to let it play out, we're still early on in in that one. They're certainly next generation algorithm to come after they control iq version of it, which is kind of a step up or there's even less user interaction where you possibly won't have to announce all the meals and Everything that will be a little more aggressive on treatment and require a little less user interaction. And we got to figure out what our strategy is going to be to do that and how we're going to go with that. So we're kind of in the algorithm business, but sensors are still our biggest, you know, that's where we pay our bills, the most important thing for us, when we saw that asset was kind of available out there that we felt it was something that we just needed to control. And then we're thrilled with it. And quite frankly, it's worked out well for me, too, because they're right away from us in San Diego. And we can very much collaborate very quickly, since we have access to those scientists and they have access to us. Stacey Simms 10:39 So let's talk about the g7. We've talked about it before. Can you give us an update, what the features will be? What makes it different and the timeline? Kevin Sayer 10:49 Well, as we've talked, I'll start with the timeline, as we've said in our public statements, will be starting a typical study this year. Our hope is have a limited launch in 2020 The limited line for that have a significant impact on our financial results. So in the public world, we don't say a whole lot about the limited launch, we intend to do the full ride in 2021. And I don't have a perfect time frame yet, I will tell you, the mitigating factor will more than likely be our ability to scale it up. As you know, from your community. We learned a lot in 2019, about scale and all those lessons were not necessarily positive, the Dexcom. But they were good learnings. It was hard, we underestimated some things when we rolled to six out the way we did and I don't know that even if we delayed three or four months like to its original plan launch date, that we would have solved those problems because the demand for G six was so much higher than we anticipated. It would be you know, in the past, we could overcome 20% more demand than we have because we didn’t fill that many sensors. So yeah, if you’re manufacturing 2 million sensors. We can come up with another 200, 300 thousand, that's not a problem. But when you use the numbers we're at today. becomes a problem. So if anything, we learned anything from the big six launch, we are going to be prepared to scale g7 when we launch it, because when it comes, nobody's going back, just like nobody's going back to G five g six features of the product, as we've talked about before it much thinner, smaller profile, disposable electronics. So there's not a transmitter component anymore. There's no assembly of anything before you put it on, you literally take it out of the box, press the insertion device into your skin and hit the button and you're gone much smaller plastics profile. from an environmental perspective, patients will be glad to know that we get that comment frequently on our current system about all the plastics length of where we're shooting for an extended wear period. I have to tell you, we will balance the extended wear period against the accuracy and performance of the system with respect to iCGM standards. We know we have to have this as an iCGM to talk to these automated delivery systems and sometimes you make trades offs. Length of wear versus accuracy, as most people know, at some point in time, the longer you wear a sensors, the more difficult it is for to perform perfectly. One of the things that I often that isn't understood about g six, I can give the perfect example, these standards set by the FDA on iCGM are difficult. They're not simple to meet. And literally the way that g six algorithm works is if through our and our analytics, we look at the sensor signal and determine that that sensor is about to become less accurate than it should be, under iCGM rules, we turn it off. So there's a perceived lack of reliability from some of our patients on the sensor, when in fact that's not the case at all. We're turning it off intentionally. And that's very often associated with physiology. You know, people's bodies are different, and even sensor sessions can be different based on how much activity you have or where, the place you insert the sensor. So we're hoping for an extended To 15 day, where it certainly wouldn't be less than 10. We will go either way, but we need to make sure we meet the criteria. The sensor is much shorter than g six. So it will be a shorter sensor from our user experience so far and our preclinical work we've had nothing but great feedback on that. Stacey Simms 14:17 What does that mean? Is it a shorter wire or a shorter device, smaller, shorter wire Kevin Sayer 14:22 Shorter wire with the direct insert, not angle, but it is straight in but it's very, very short. Stacey Simms 14:33 More to come on the g7 and many other Dexcom issues. But first Diabetes Connections is brought to you by Real Good Foods, good foods, and their philosophy is all about keeping it real with food with community and with each other. And if you go on their website, you can find out so much more about the product real food, high protein, it's not about chemically made protein powders. This is about food, chicken cheese Right, low carb, grain free and zero added sugar. They keep adding products. We are big fans of the original pizza and the poppers but they've added a breakfast sandwiches with sausage or with bacon, cauliflower crust pizzas, chicken alfredo, other Italian entrees. They just keep adding more great stuff, find out more, go to Diabetes Connections calm and click on the Real Good Foods logo. Now back to my interview with Kevin and we were talking about the g7. You mentioned the the longer were balanced with their performance Do you expect the g7 to perform differently to perform I hate to say better but to use the criteria you were talking about with the iCGM? Do you expect fewer issues with either Physiology or the sensor sensing that something is wrong and then turning off. Kevin Sayer 15:57 That is our hope and our belief? We have learned So much from G six, as to what we can improve and make better It's been one of the scientists said to me the other day, he feels like he's working in a semiconductor factory. We're learning that much about sensors these days, as we're preparing for this setting to launch this product, we may not even be able to get all the things we've learned into the first version. But I think there'll be a couple of iterations whereby I know the extended wear will come and I know that that the reliability will be there. One of the things that we put around ourselves as a criteria is to significantly improve the reliability percentages. And we were experiencing on G six today, both on G six going forward and on g7. It just doesn't work. Patients have to return to the sensors, because they fall off or don't last long enough. We have to make that experience more consistent. So we're very focused on that. Not just with you seven, but with the six improvements as well. Stacey Simms 16:51 All right, this next one, I just have to get it out. Kevin, I feel like a broken record. But can we talk about direct to watch what's going on? I know there's been a lot of holdups but is that something that’s happening? Kevin Sayer 17:03 No, and we're working on it I appreciate you asking again, is technologically very difficult a Bluetooth protocols on the watch are not the same as the phone. And I go down to r&d and I asked the guys a question, every time I talk to you tell me what's going on. And it's not only difficult from the Bluetooth perspective, there's an experience perspective, it's also difficult with respect to the alerts Can we make it worse, audibly loud enough for by somebody can hear them? What happens when you take your watch and you put it on your charger and it's your primary displaying walk away, there's some where issues and some issues around the watch to create a little bit different experience and required a bit more fun on our part, and quite candidly, a lot more complex engineering. And we have done firmware updates to get us closer there. When we're done. We'll announce it. The other thing I would tell you is even if we weren't finished today, I wouldn't tell anybody I'm not trying to tell anybody till every transmitter in the field is was compatible because it will be different. version of the firmware on the transmitter. And while it was still be seamless on your iPhone or your Android phone, it will look the same if we announced direct to watch, and then we have a bunch of transmitters in the field that don't go director will watch, we're creating a tech support issue that will...
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Minisode #8: When A Child With T1D is Afraid to Get Back in the Game
02/20/2020
Minisode #8: When A Child With T1D is Afraid to Get Back in the Game
When a child is diagnosed with type 1 diabetes, most of the time the parents are told that T1D won't stop them. People with diabetes play sports, climb mountains, pursue acting and singing careers and much more. But what happens if a young child is scared to get back in the swing of things? Stacey has advice for a family she met whose little boy is so afraid of low blood sugar, that he's sitting out his beloved soccer games. ----- 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 on Amazon as a paperback eBook and audiobook and at Diabetes Connections.com. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 Hello, and welcome to a minisode of Diabetes Connections. Today I want to talk to you about a question that came up. When I traveled to Maine. This was a couple of weeks ago, I visited a group called the Maine P-Pods. It was a really fun event where I did my World’s Worst Diabetes Mom presentation. And we also had a presentation from Dr. Howard Wolpert who is a renowned endocrinologist and he talked about carbohydrates and really did a good medical presentation as you would expect. And then the two of us - this was really cool -. We got to Do q&a with the audience. So you had me, the mom, the lay person partnered with a pretty terrific endocrinologist. And then there were other healthcare professionals in the audience who were there kind of for support and popped in as well. I'm pretty sure they were also there to make sure I didn't go off the rails, because they hadn't heard me speak before. And when you're billed as the World’s Worst Diabetes Mom, I think they want to make sure you're not going to give the world's worst diabetes advice. I want to share with you a question that came up that I think probably comes up more often than we realize. This was a mom and dad of a recently diagnosed I probably a couple of months in I'm sorry, I don't remember exactly. But my impression was, let's say six months ago, maybe four months ago. This was a six year old, and this six year old had been so excited to play soccer, really wanted to play soccer, loves soccer, can't wait to join the soccer team. But now with type 1 diabetes, the mom is sharing that the six year old is terrified to play soccer, because he is afraid of going low. And it's really breaking her heart, because he has a brother who is playing soccer and is doing just fine. So the question was, how can I get my child over his fear of low blood sugars? And I thought this was a great question. Because what we normally get is all the rah rah cheerleading of, you know, our kids can do anything, and diabetes won't stop you and get right back in there. And, you know, that's probably what happens. Most of the time if the parents go along with it, right. It's for the parents to say, right, we're going to get right back in here we go, here we go. But this can't be the only child who is frightened for some reason. So what's going on? I asked her a couple of questions. And I told her not to answer because, you know, there's only so much information you really want to put out publicly right and I don't want to pop psychologize that's really the turn of phrase, but you know what I mean? I didn't want to play psychologist when I'm certainly not in a, an educated position to do so. But no, it had the medical people there to back me up. I thought it was on pretty safe ground. So I asked her, What is he afraid of? Is he just afraid of that awful feeling? Right? He doesn't want to feel low? Is he afraid that it's going to be embarrassing that he has to leave the field for juice or that his mom is going to be checking his blood sugar? You know? Is he embarrassed about it? Or he wants to hide his diabetes? Or is he truly afraid that something bad is going to happen that he's gonna pass out on the field or he's going to die from a low blood sugar? And then I asked her, again, not to answer in front of all these people. But where do you think the fear is coming from? Because a six year old is not going to decide that a low blood sugar is dangerous. Somebody's going to tell him this. And if that's what he's afraid of, where did that fear come from? Right. Take a cold hard look. Is it coming from the parents? Is it coming from a YouTube video he said did an older kid at school telling something? I had a situation with Benny years ago, I want to say he was seven years old at a day camp. And if you're new to the show, my son Benny was diagnosed right before he turned two. He is now 15. And we've been all sorts of crazy situations. But he was about seven years old at a regular day camp. And he came home and he said, Mom, there's a kid at Camp who said, If I keep sticking my finger, I'm going to bleed to death. can that happen? So these kids get this fear, sometimes just from other kids who are just being kids, that other child, maybe thought he was helping? I mean, who knows? Right? Obviously, Benny and I had a whole conversation about how actually, the more you check your finger, the longer you will live, the better you will feel and the happier everybody will be. And he went back to tell us friend No, not gonna bleed to death. All right, one problem solved until the next one. But my point is you don't know where the information is coming from. So these are a couple of things to figure out. And then what do you do? Well, I suggested that they talked to their kids care team, talk to their endo about this talk to their diabetes educator, because there's a lot you can do to try to avoid those lows. The most common suggestion is usually, to adjust your basal rate if you're using an insulin pump two hours earlier, you can adjust the insulin rate or just take the pump off right before you play and expect your blood sugar not to go down. It takes about two hours for those basal rates. Part of the reason and I was very interested, I hadn't heard this before. Dr. Wolpert from the stage also answering this question said that there is often insulin on the end or in the canula. So even if you take off the insulin pump, that insulin is going to drip in over about two hours, which is one of the reasons why they recommend that you start adjusting two hours earlier. And I know you're thinking the canula that holds barely any insulin. But remember, this is a little kid, and there are very insulin sensitive adults as well. But when you think about a six year old, what does a six year old even weigh 50 pounds Maybe I should probably look that up. But you know what I mean? They're pretty tiny. Even a big six year old really isn't that big, and a little bit of insulin can make a difference. That's just one thing you can do. Give a bigger snack, try to set things up a little bit better. Tell the coach, I mean, this is six year old soccer player, tell the coach he's going to play for 10 minutes, we're going to ease our way back into it to even play for more than 10 minutes. I mostly remember soccer at five and six year old as being five minutes of play. And then 20 minutes of snacking. I remember and I think I wrote about this in the book to the hardest part of soccer was that it was all snacks when they were little kids. And Benny never even ran around the field that much. His favorite part of soccer, was trying to stand as far back on the field. He only played when he was five and six years old, standing as far back in the field as he could kicking the ball as far and as hard as he could and trying to make a goal. And he did that a couple of times. So our soccer experience was a little bit different. Something else that I thought about later but didn't think to suggest the time is talking to This child about professional soccer players with Type 1 diabetes. And I'm mad that I didn't think of this because this was a trivia question in my game show. I want to say last year, maybe the year before I do a game show every summer at friends for life, the big diabetes conference. And this was a trivia question. There is a footballer right a soccer player in Spain, Nacho Fernandez, he has type 1 diabetes, and he's the first person with T1D to score in a world cup. Nacho was told that he needed to quit the sport that his days were done. footballing days were over when he was diagnosed at age 12. He said, No, thank you, I will continue to play and he did so and he has done another world stage. There are lots of footballers and professional soccer players with Type 1 diabetes. So you can look that up. If you have a child who's concerned you to find those people playing the sport or doing the activity. And there's a lot of articles about these people. Sometimes they'll give you tips and tricks and what they do and what they eat. It's really interesting. They can do it on a professional level, you got to have the confidence that your six year old can run around the field on a Saturday afternoon for a couple of minutes. And then the final thing I'll say, and I did give this advice to the parents at the at this conference was, sometimes you just have to be the parent and tell them, it's time to do this. You're going to be okay. And we're going to go play soccer. I know it sounds harsh, but it's okay. And it's okay to say you are going to go low, and you are going to go high. And that's just diabetes. Maybe it's, you know, an age appropriate conversation about you are your own science experiment. We talked about that a lot with Benny, you know, we're not looking for perfection here. But we're going to learn from it this week. So we can do better next week. And we're just going to keep learning and learning. We're going to make mistakes. We're going to make different mistakes next week, but I'm here you're safe. It's fine. Let's do it. And this is probably not a great example. But it's the first thing that pops into my mind when we say tell kids to do it sometimes. When Benny was potty trained. And please don't tell him I told this story. But when he was potty training, my daughter was potty trained in three seconds. She turned to that was it were done. She was Piece of cake. And Benny turned to I said to him, Hey, let's do this. Do you want to like, do you want to use the potty? And he said, No. So I said, Okay. And every couple of weeks, I would say, Is it time? Do you want to, you know, and he was saying, No, finally, when he was two and a half, I said, What am I doing asking my toddler? So I said to him, today's the day we're going to do it potty training. And he was like, fine, because right, and we did it. I mean, it was unbelievable to me looking back that I asked, stop asking, just tell them, and sometimes that can work. Now, obviously, you have to kind of figure out what feels right for your family. And please, the best advice I think I gave here is to talk to your endocrinologist and your care team. But I really believe that if our kids are scared to do something because of diabetes, that fear is coming from somewhere and it can be addressed. So we it's up to us. Find the resources to get them over that fear. You're not a bad parent, if your child is scared, right? You're not a bad parent. If this lasts for a while, we're all just doing the best that we can. And sometimes, like with Benny at camp, the information, the bad information is coming from someplace that you don't suspect. You have these conversations. Keep trying, keep encouraging. Sometimes you're just gonna tell them this is how it is. What do you think? Do you have any advice for this family? You can always let me know I'm going to put this in the Facebook group at Diabetes Connections, the group you can email me Stacey at diabetes dash connections.com. Let me know if you think it this is off base. If any of this is helpful. I am the World’s Worst Diabetes Mom after all, so keep that in mind if you're thinking about taking any advice that I offer, but I will say the health care providers in the room back to me up, I'm answering this question and added some information. In fact, the best thing I almost forgot the best thing a pediatric endocrinologist stood up and said, I want to reassure these parents, although I think it really is the kid. I don't think this fear was coming from these parents. They really wanted to get him back on the soccer field. He said, I want to reassure you that in the thousands of kids I have seen and that I think he was like 30 years in practice. He says, nobody's ever passed out on a soccer field. And certainly, nobody's ever dropped dead on a soccer field. He said, it just doesn't happen. And we have to get over this fear that our kids are on death's door, when they're diagnosed with Type 1 diabetes. They are not. He was amazing. You know, those are important to treat. You want to take care of business, you got to do what you gotta do. But don't be fearful. I really wanted to cheer. I was so excited to hear him talk about this. Because I think a lot of endos are reluctant to say those kinds of things, and certainly not on a public stage like that. It was great. So let me know what you think. Tell me what your opinions are on this. How would you encourage a kid To not be fearful and get right back into sports, he will a lot of adults are reluctant to exercise because they're concerned. So what's your advice? Coming up on our regular episode next week, I am scheduled to talk to the CEO of Dexcom. I do have a lot of questions. I know you have a lot of questions as well. I will be putting a post in the Facebook group there as well soliciting and finding out what everybody wants to talk about. We'll see how much time I get and we will try to get through as many questions as I can. So that will be our regular interview show coming up on Tuesday. I'm Stacey Simms. I hope to see you back there then. And until then, be kind to yourself. Unknown Speaker 12:45 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
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"Mastering Diabetes" Author Robby Barbaro Talks Fruit, Fat, & Insulin Resistance
02/18/2020
"Mastering Diabetes" Author Robby Barbaro Talks Fruit, Fat, & Insulin Resistance
This week, a look at a way of eating for all types of diabetes that sounds – frankly – really hard to do. But the guys behind it say it’s the key for lowering insulin resistance for all types of diabetes. Robby Barbaro is the co-author of a We’ll talk about what he actually eats now and why he’s so passionate about this. He has a pretty compelling story. In TMSG – when an avid scuba diver is diagnosed with type 1, she finds a way to get back in – and under – the water. Plus, a little bit of a control iq update for us – we’ll tell you how it’s working out. 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, I look at a way of eating that sounds frankly, really hard to do. But the guys behind it say it's the key for lowering insulin resistance in people with all types of diabetes, even so, it seems a little extreme. Robby Barbaro 0:42 And I come down to the Christmas Day meal and I literally have a pyramid of bananas. We're talking four bananas on the bottom and three then to the true pyramid of ripe bananas. And that's how the practice was done. They were just shaking their head like this. They were kind of laughing and thinking this is not And Alas, there's no way because they've seen me try out different diets over the years. Stacey Simms 1:03 Robby Barbaro is the co author of a new book called Mastering Diabetes. We'll talk about what he actually eats now and why he is so passionate about this. He has a pretty compelling story in Tell me something good. When an avid scuba diver is diagnosed with type one, she finds a way to get back in and under the water. Plus a little bit of a Control IQ update for us. We'll tell you how it's working out. 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, so glad to have you along. We aim to educate and inspire by sharing stories of connection when it comes to type one diabetes. My son was diagnosed right before he turned two and that was 13 years ago now. My husband lives with type two diabetes. I do not have Diabetes, but I do have a background in broadcasting in radio and television local news. And that's how you get the podcast. A lot to talk about this week, we will get to Mastering Diabetes in just a moment. But I want to give you a quick update on our experience transitioning over to tslim X2 insulin pump along with a Dexcom G6 continuous glucose monitor. And then the Control IQ is the software that is in the pump. If you're not interested in this, if you're not using this kind of pump, or if you are on MDI or, you know, just skip ahead a few minutes. I do have time codes as always in these newer transcribed episodes for this year. So you can open the episode homepage, open the notes, and you can skip right ahead to the interview. But if you want to know about our control IQ experience, here's how it's going. We were able to get the new software very early On we got it I want to say the third week of January, we did not get it without issue. Benny's pump was one of the few that could not be updated by plugging it in. There was some issue with the software update that was already in the pump. And even everybody who had that version of the software, only a very small percentage, my understanding couldn't actually plug into the computer and update. Anyway, tandem sent us a new pump with Control IQ on it. And of course, I was to send the old pump back. So we updated immediately it started doing its thing. I will go into more detail about after a month of using it, we're going to sit down and talk about it. But Wow, it really made a difference right away. The problem was that it was tanking him he was going low, overnight, every night. And I try to not make changes until about two or three days. Right. We have to kind of see how things go. You don't want to overreact. So he went low the first three nights. And then of course we changed it because I'm talking down to 40 you know for extended periods of time. We cut way back on basal. We also cut insulin sensitivity, which really shouldn't affect it when it's in that sleep mode because the sleep mode doesn't give boluses. But we cut back on that anyway because it seemed to be having some issues with corrections during the day really making him go lower than he should have been having to suspend insulin. After that. It really smoothed out. He was using less insulin. He was in range in a very much increased amount of time. You could see his numbers were coming down. It was really cool. Even on a day where he completely forgot to bolus for a big brownie in the afternoon. He went way up, but he didn't stay up. And if you've done that, you know that at least for us, you know if you have like, I mean really, let's be honest, 50 uncovered carbs 40, 50 uncovered carbs. You're going to go up to 300 and stay there for a while. But Control IQ. He did have to bolus but Control IQ brought him down really quickly. It was great. But unfortunately, it didn't stay great. About two weeks in his pump, the brand new pump that they had just sent us with the update, gave us one of those alarms that you can't reset. Oh my goodness. So I was actually on my way out of town. That was the weekend I was heading to Maine. And Benny was going to be leaving that afternoon for the two day wrestling tournament. So again, he could have done shots, but we were just like, oh, my goodness, you know, what are we going to do? Well, I hadn't actually sent that other pump back yet. It was on my list of things to do, I promise, but I hadn't gotten around to it. So luckily, he put on the old basal IQ pump, the previous software, my husband called tandem, and you know, they went through the troubleshooting is this an alarm that can be cleared? It could not. So they overnighted another Control IQ pump, and I put return the pump on my list of things to do yet again, but then, okay, so then he is at a two day wrestling tournament. It was supposed to be one day, unless they won, which they did, which meant they went to the state championships which spoiler alert, they won. So it was two days of travel and crazy food and then celebration food. parties. Oh my goodness. And as you know if you've been listening while Benny's not actually wrestling this season, he's actually more like the manager because he hurt his knee. So he's doing great, very exciting to be a freshman and have the first school state championship for the wrestling team was very, very cool. But anyway, alright, so back to the pump situation. So then on Sunday, he's home. He's got the new control, like pump on and then early Monday morning, I want to say five o'clock in the morning, transmitter failure. Not you know, we're not sure not sensor error, not sensor failure, transmitter error for the Dexcom. So Benny turned it off. I didn't even know he just kind of clicked off and went back to sleep until six. I mean, he got one more hour of sleep. That transmitter was two weeks old. It's not supposed to crap out that early, of course. So we had to pull the sensor the transmitter put a whole new set on. Of course I called Dexcom. They replaced everything. But then we're another day really a day and a half between everything that was going on with that. Control IQ so I can say what it's working thumbs up when the technology's not working, which will happen, right? He's fine. I mean, we could always go back to shots, certainly, but who wants to do that? So little frustrating, but we moved forward. The only advice I have if you're about to start Control IQ, if you're thinking about it, if you haven't made the switch over yet, is, I would highly recommend and please talk to your endocrinologist before doing this, make the change for insulin duration, change over to five hours now, because that's not negotiable on the Control IQ system. And most of us have it set frankly, incorrectly, because we're making up for it in other ways. A lot of studies have been done in this I'm sure if you're familiar at all with Control IQ, you've heard this, but if you haven't, one of the things we did was set the insulin duration to five hours several weeks before starting. And I think it really helped us in the transition. Something to think about something to talk to your endo about and then you just Gotta be patient, make changes slowly and let it do its job. It's so hard when we're used to managing these dumb pumps, right and do this, do that and stay on top of that. To let it do its thing is very difficult. Okay, let's get to Mastering Diabetes in just a moment. But first Diabetes Connections is brought to you by Real Good Foods and new brand new from them stand alone crusts, so you can create your own pizza but whatever toppings you want, but this is a cook and serve pizza crust, grain free. It's made with cauliflower. I mean, you know Real Good Foods. They're delicious. high in protein, low and carb grain free gluten free. Lots of varieties. I mean, they have the pizzas that have great toppings on them. They have stuffed chicken, they have breakfast sandwiches, huge variety. I like it because it's really easy to find in my grocery store freezer, but you can go online and order the whole shebang. Find out all the different products that they have and mix and match. Find out more go to diabetes dash connection. dot com and click on the Real Good Foods logo. My guest this week is one of the authors of the new book Mastering Diabetes. These guys also have a podcast, Robby Barbaro and Dr. Cyrus Khambatta say, focusing on lowering insulin resistance through food is the key to living well, with all types of diabetes. Robby lives with type one. And I promise he's really not saying anything out of bounds here, like, you know, this is going to get you off insulin or this is a cure, but there are some unconventional thoughts that he shares in this interview. As always, when I talked to people who are focusing on a particular way of eating, and I do this all the time, we've talked to people who eat low carb people, you know, high fat keto, people who are making these claims on the podcast. This is not something that I verify or confirm during the interview, and do my best to give you all the information. But again, before you make any changes, please talk to your endo. I really did enjoy talking to Robby. Here's our conversation. Robby, thank you so much for joining me. I am so intrigued by everything I have read and heard. Thanks for coming on, Robby Barbaro 10:09 Stacey. It's really an honor to be here. I love your show. And the fact that I'm getting to be on it is just really exciting to me. Stacey Simms 10:15 Oh, thank you so much. We have so much to talk about. I have so many questions for you. But I want to start at your beginning. You had a fairly typical from what I seen onset of type one diabetes as a teenager as a tween, really, but you were diagnosed by your brother. Robby Barbaro 10:31 Yes, it truly is a fascinating story. So I'm on January 26. That'll be the day that I have lived with Type One Diabetes for 20 years. So I was 12 just about to turn 13 and I complained to my mom, I said, Mom, I am thirsty all the time. I'm going to the bathroom all the time. I think I have diabetes, just like Steve so I have two older brothers. The middle one Steve was diagnosed with Type One Diabetes eight years prior to me and I was pretty sure I had diabetes around said no, no, I don't think you do. Don't Don't be silly. I said, Okay, fine. And then eventually, she went out of town to go look at homes in Florida where we eventually moved. So it was just myself and my middle brother at home. And she called the check in and she said, Hey, how are things going? I said, Mom, I couldn't sleep last night, I was cramping. She said, Okay, go upstairs. Use your brother's bug because meter test yourself. And I was well over 400. And my brother said, right there in there, okay. You have Type One Diabetes pack, your bags are going to be the hospital for a few nights. So we went to the regular general doctor, they ran a few tests. And I remember the doctor coming in said, Yep, you have type one diabetes, we're going to send you to the hospital. And that was the first time I had seen my brother crying, as you know, as an adult. And he said, Oh, man, just sorry. You have to experience this too. And my parents flew home the next night. And this mother thing that really stayed with me as my dad saying, Don't worry, it's just an infant. convenience, you can still do whatever you want in life. And that was really the mentality that my parents had. And really, they were very, very supportive, very encouraging. And really let myself and my brother really take charge of our diabetes care. And, you know, we were we were both already, you know, type a people that really were on top of it, and we had good medical care from the Mayo Clinic. So it didn't really crush me. You know, I really had a really supportive environment had the tools I needed, and it just began a new life with Type One Diabetes. Stacey I'm really intrigued by your brother's reaction because on the one hand here, you have a brother who's nine years older than you you look up to him, I'm sure and you see that he's probably doing pretty well with this. So on the one hand, it's okay I'm gonna be fine. But then he gets emotional. And he says for you, so that's the had to have been tough to digest as a kid, like I'm going to be okay but there is the sadness too Robby Barbaro 12:55 play the sure the whole thing was honestly it kind of like, I can I sort of remember certain bits and pieces. I remember driving in the car and talking to my parents on the phone. And just it didn't really, it didn't hit me like I didn't kind of fully understand what was going on. But I guess I just ease into it. And at some point, I guess you just you don't really have a choice. It is what it is, you know? Yeah, Stacey Simms 13:19 no doubt. So the years go on, I assume that you were treated more traditionally in terms of you start on insulin, you're eating particular diet, you know, your parents are keeping you busy in school. But you had other health issues as a teen Robby Barbaro 13:35 I did. I had plantar fasciitis, which was frustrating. I was a competitive tennis player. So that's really a painful, painful feeling in your feet when you're walking and trying to run so I would wear these big blue boots at nights to try and help with passive stretching to do plantar fasciitis. I had chronic allergies are all the time, so I took Nathan x and Claritin. D and I would still get sick. As a teenager. I had cystic Acme, which was really frustrating and I tried everything microdermabrasion treatments, laser treatments, oral creams, like oral medical or eye creams for my face and oral medications. Eventually, they put me on Accutane. And that's one of the most serious drugs you can take for acne, your parents actually have to sign a waiver, because some people have committed suicide and that drug. So I also had warts on my feet. So these were just a collection of you know, frustrating, I think, standard symptoms that a lot of people have. Wow. Stacey Simms 14:33 So when did all the fruit stuff start? When did you decide? Robby Barbaro 14:38 I mean, I'm sorry. Yeah. I mean, I'll tell you the journey to get into the fruit stuff. So growing up, this is when I was living in Minnesota, you know, doing standard diabetes care. I went to the Mayo Clinic in Rochester, Minnesota with a Vincent cloud, and we would go there and they just had a great team. We had an endocrinologist. I had a dietitian, I had a psychologist. So it was a team effort. There. And the key thing I remember learning from them was like using a log book and actually got quite good at that. But I had standard care. And my dad was into selling supplements through a network marketing company and getting exposed to what they were teaching and some of their educational material was the very beginning of me really considering Okay, wait a minute, there's something to nutrition there's something to diet outside of just following a standard American diet, not really thinking about it. So that was the beginning. And it was a slow evolution of learning. Okay, wait a minute, you know, trying to avoid additives or foods like MSG, like that's good. That's a good idea for your overall health. And I slowly progressed. Eventually, I came across many different lifestyles. But as I was on this journey of learning as much as I could, I came across a book called natural cures they don't want you to know about by Kevin Trudeau. Now, I'm not recommending this book. This guy ended up in jail. Yeah, there's, there's some things I'm not recommending it. But I came across this book, and it planted a seed in my mind that you know what, maybe it's possible to reverse type one diabetes. If I just eat as healthy as humanly possible and I take care of my body. Maybe I can put myself in such a healthy state that my body will regenerate new beta cells. And now it's just it was the theory the hypothesis. Okay, wait a minute. Like, I know other people haven't done this. But hey, somebody has to do it first. You know, for example, Roger Bannister was the first person to run four minute mile. And before he did, the smartest people in the world said that's impossible, your heart will explode. And once he did it, other people started doing it. So I do think we're gonna we're gonna figure this out at some point some way how to get beta cells to work again. Naturally, I do believe that but that's not happened. So I go down this mission of Okay, I will do anything and everything to give my body the best chance of healing itself. So I started learning about the concept of fasting. So fasting is when you when you go to bed at night, you're doing like a mini fast and you in the morning you eat breakfast you're breaking your fast and healing and regeneration happens over that time. So it's okay, you know what type of dietary habits can I do to increase the chance of my body healing itself. And this led me to try summarize, the first thing I tried was a Weston a price foundation diet, and that was eating a lot of grass fed beef. They advocate for raw milk, I remember going to farmers markets, and I would buy milk for cats because you can't sell raw milk to humans. And again, I did see some improvements as I cleaned up my diet and got rid of any sort of junk and processed food. There was definitely some improvements but I didn't see anything specific happen to my diabetes health or my insulin intake or my blood glucose control. So I continue to learn more and learn more, and eventually, I came across a dive by the name of Dr. Gabriel cousins and He was in a movie and he produced a movie called raw for 30 days. And in this movie, he showed how people following his protocol, which is essentially a plant based ketogenic diet. He didn't call it that at the time because ketogenic diets weren't really popular, but that's what it was. I would eat lots of nuts and seeds,...
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Minisode #7: Spare a Rose / What Can We Do About The Price of Insulin?
02/13/2020
Minisode #7: Spare a Rose / What Can We Do About The Price of Insulin?
Two big topics for this mini-espidoe. Stacey talks about Spare a Rose and talks to the leaders of Patients for Affordable Drugs. Spare a Rose is an initiative to get insulin and other vital diabetes supplies to children in the developing world. Stacey also talks about what we can do about the price of insulin with founder David Mitchell and Lauren Stanford, the community organizing director. ----- 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 One Diabetes available at Amazon as a paperback ebook and audiobook. Learn more at diabetes connections.com Announcer 0:20 this is diabetes connections with Stacey Simms. Stacey Simms 0:26 Hey, welcome to this week's minisode something a little bit different. I've been doing these short episodes all year long for 2020. And this is our first interview type episode. But I wanted to get some information to you that I thought would be interesting and helpful and about patient advocacy. So we're going to talk about what's been happening with patients for affordable drugs. I spoke about them. Last fall of it put out a report and I wanted to follow up on it. Of course there's a lot of information in the news these days about the price of insulin price of insulin There were advocates at State of the Union address. These are not the same advocates, but a lot of the same push. And I also want to talk about spare arose. So let's do that first spirit arose is an initiative that happens every year to help kids with diabetes in developing countries, so that they can get insulin. It doesn't take a lot of money to help out and it really does make a huge difference in the lives of these people around the world. Why is it called spare arose? Well, back in 2013, a group of people in the basically the diabetes online community realized that for the price of one rose for Valentine's Day, they could make a huge difference in the lives of children. So you spare a rose, you save a child, they've expanded it so that you can, you know, spare quite a few roses. There are different ways to pay for this. But it's really a very simple concept. Where does the money go? There is an organization called Life or child, and they partner with diabetes centers in places like Rwanda, Mexico, India, to give critical supplies to young people who really have nowhere else to turn. Right now, this program supports 21,000 people in 42 countries. And the goal here, no child should die of diabetes. If you'd like to learn more, I will link up everything in the episode homepage. You can see pictures of the families that have already been helped. You can read stories of kids who need help, and you can find easy easy ways to donate. So if you can possibly spare arose this Valentine's Day, it would be very much appreciated. We have done a lot on this in the past. I will link up a very fun episode we did a few years ago with Carrie Sparling and Scott Johnson and Bennett Dunlap, where we talked about this initiative. Gosh, it was probably 2015 maybe was 2016 but it was a while ago about learning more, and why I really do urge you to consider taking part in Spare a Rose While you're learning about that initiative, I also thought it was a good time to take a look at what's happening here in this country, and what's going on with our communities struggle to get the word out about the price of insulin. And if you've been following a lot of this, it has really heated up in the last couple of years. It seems like a lot of state legislators are taking this on. But at the federal level, it seems like it is stalling and you know, what can we do? Well, patients for affordable drugs put out a report a couple of months ago now. And I want to follow up with them and learn more about what they're doing. What we can do what what can be done about the price of insulin because I think when many of us hear this, we feel like there's just nothing I can do. It's overwhelming. Politicians are just arguing they're never going to get anything done. Well that may be true, that last bit, but there is something we can do. So I wanted to talk to the founder David Mitchell and community organizing director Lauren stand I should note that since I talked to them, each are three, which they're mentioning here did pass the House at the time of this interview, it had not yet passed, but the Senate has not acted. I reached out to Lauren to get an update on that. And she said that they need to pass the health care package by May. So they are pushing for them to include s 2542. It is less far reaching than HR three, she says but would bring meaningful relief to many patients. This is also called the prescription drug pricing Reduction Act introduced by Senators Grassley and widen and it has passed out of the senate finance committee as of this taping in a bipartisan fashion. It has not yet passed the full Senate and it includes the following it would penalize drug makers for price gouging. It caps Medicare beneficiaries out of pocket spending on prescription drugs, and it requires pharmaceutical companies to justify high prices. I will link up information on this as well as h3 and the other items we talked about in the episode homepage. Here is my interview with David Mitchell and Lauren Stanford, David and Lauren, thanks so much for taking some time to kind of explain a little bit about this. I really appreciate it. Thanks for being here. David Mitchel 5:18 Thank you, Stacey, for the opportunity. Stacey Simms 5:20 Thank you for having us. Before we talk about the report itself, and you know what we can do as individuals. David, let me just ask you to explain a little bit about what patients for affordable drugs is all about. Can you talk to us about the organization? David Mitchell 5:35 Yes, patients for affordable drugs is the only national patient organization focused exclusively on policies to lower drug prices. We're independent, we're bipartisan, and we don't take money from anyone who profits from the development or distribution of prescription drugs. We do two main things we collect patient stories elevate those stories to policy makers and elected officials and train people to be advocates Lowering drug prices. And we are building a community of patients and allies that can be mobilized in support of policies to lower drug prices, both at the state and federal levels. My wife and I decided to do this, because she's a cancer survivor. I am a cancer patient. I had an incurable blood cancer. My drugs are very expensive. They're keeping me alive, but they're keeping me alive at a cost list cost of $875,000 a year right now. And just one of my drugs and oral cancer drugs carries an out of pocket cost of more than $13,000 a year. So we have a personal experience here. And we're trying to bring that experience to bear to mobilize folks who are struggling with high drug prices, whether it's for cancer drugs or Crohn's disease, drugs, inflammatory drugs, insulin, there are millions of people who are struggling We're trying to help them have a voice and get something done that will actually lower the prices of drugs. Stacey Simms 7:06 Was it your personal experience with your cancer diagnosis that led you to start patients for affordable drugs? Or had you been doing this and then this happened. David Mitchell 7:15 I had been doing health policy work in Washington, DC for about 30 years, then I got cancer. And my experience as a patient was really searing for me to find out how difficult I prices could make trying to manage a chronic disease or stay alive with an acute deadly disease. And I became increasingly frustrated because there were no patient groups speaking out about drug prices. Literally one day I woke up and I had an epiphany. And it was, hey, maybe if nobody else is going to do this, you should try. And that morning, I went downstairs and my wife said, Honey, can I retire? Can I work for free? Can we put in some of our own Money and try and build an organization of patients that would fight for lower drug prices? And she said yes. So here we are. Stacey Simms 8:07 All right, I could talk to you about the organization for hours and hours. But we're really here to talk about this report the truth about insulin prices. So Lauren, let me ask you, as a person who lives with Type One Diabetes, what do you get out of this report? what's the takeaway here? Lauren Stanford 8:22 Well, Stacy, I will tell you, when I first read this report, it was kind of shocking. I knew the prices of insulin, were out of control, but just seeing it all written down and laid out. Like that was kind of horrifying for me as a patient. And I know when people in the community saw it, it was kind of the same feeling like seeing the chart with the prices just going up and up and up and reading about the 300% increases and all this and that it was really like startling, but really good information, but kind of heartbreaking at the same time. Stacey Simms 8:56 Lauren, let's go through this a little bit, because in the report, you will Aren't pulling punches. I mean, there's a section here that's headline price gouging and price fixing. Tell us about that. So not pulling punches. Yeah, Lauren Stanford 9:09 we're really there's a lot of facts in this. And I think that the spec facts kind of speak for themselves, the price gouging. You can when you're reading the report, you can see that the three companies Eli, Lilly, Sanofi and Novartis, they've all been working together, it seems and price fixing this insulin to keep raising the prices and the report, our chart goes back to 2001. And you can see since then there's been this steady increase from all three of them. It's just crazy. I mean, I can't put into words how exactly it makes me feel. But David might be able to speak a little more to the history of the price gouging and fixing David Mitchell 9:47 Well, the fact of the matter is that those three companies have managed to take control of the global insulin market, and they have effectively blocked other competitors from entering the market with The enough competition to actually drive down prices. And rather than compete with each other on price, they are content to maintain market shares and divide up the profits and be able to keep raising their prices in lockstep. It's very important to look at that chart and see whether or not they talk to each other and say, Hey, we're going to raise our price 15% next month, or not, they can each see what the other one is doing. And clearly, none of the three is willing to lower the price in order to try and steal market share their content to keep high profits and divide them up. We're going to have to break that cartel in order to lower prices or develop the ability to negotiate with the three directly which is why legislation to permit direct negotiation by Medicare in this country for lower prices is so important. Stacey Simms 10:54 One of the things that that strikes me when you use words like cartel and gouging and fixed is why hasn't the government already stepped in? If this is so blatantly obvious, right? Why hasn't the government stepped in and said, you cannot do this? David Mitchell 11:10 Apparently, I'm not a lawyer, apparently, unless they get on the phone and say, we're going to move our prices 15% all at once and talk to each other about it. They are allowed to do shadow pricing under our current law, and they're allowed to see what the other one is doing and then just match the price. So long as they don't talk about it. You can see what they're doing. It's obvious, but under law, if they don't talk to each other and collude, it's a harder case to prove. That's my understanding. I'm not a lawyer, to say, however, that the government isn't doing anything about it. You have to put one word behind it and that is yet because there are plenty of bills in Congress that would tackle high drug prices. And would allow, for example, Medicare to negotiate directly with the drug companies, including the insulin companies for lower prices. And there are bills to encourage the development of more generic and biosimilar drives that would provide additional competition that would also lower prices. So there is a recognition that this is a problem. But as with every one of the drugs we're fighting for lower prices for enough has not been done yet. We have much more work to do. The fact is in our system, drives are supposed to get a period of time to make a lot of money when a new drug comes to market and then we introduce competition through generics and biosimilars to make prices go down. Insulin is the exact opposite. We introduce these three drugs and instead of prices going down because of competition, they just continue to go up. And it's because of the abuses of these companies engaging regulators recognize it And I believe that within the next couple of years, we will succeed in making insulin look like the more normal model of high prices end and prices go down. Stacey Simms 13:12 One of the things that I think is really interesting in this report are the personal stories, because it's not just numbers, which are great and useful information. But there are faces and names of people who have rationed insulin who would talk about the struggle to afford it. And Lauren, I mentioned that you live with Type One Diabetes and you have for more than 20 years, can you talk about your experiences and of the people that you know as well because I know you have to know people who've really been in tough spots. Lauren Stanford 13:39 Yeah, and I always say that I am definitely one of the lucky ones because I've always had help and support with paying for my insulin and I've had my parents to fall back on but especially through my work. At p for ad I've heard stories about I were talking with a patient Yesterday who has to sometimes not pay your electricity bill so that she can afford her insulin every month? And I just hear so many stories like that every day and it's awful. And I mean, Stacy, you know, in the community, I think there's been, I want to say a isn't he? We don't. There's been multiple people who have passed away, I think five in the last year from rationing insulin, and it's just incredible that this can happen in America. I can't believe it. And like I said, I talked to people every day that are rationing their insulin, and it's just outrageous and heartbreaking. And like we say to legislators, when we're on the hilar we hear in our stories, like insulin isn't optional for us and rationing isn't an option at all or it shouldn't be an option that people have to do Stacey Simms 14:48 something to do. I think one of the ways in which my eyes have been opened in the last few years is you know, when when we're fortunate like you and I Lauren to have insurance, right, right go and I get my supply and my insurance pays for it and it's 25 bucks for me it's no big deal here and there, but then there was a time where we were one bottle short, and they said okay $300 Yeah, that one vial of insulin right you think you think who is paying these prices? Right? It seems like well everybody I know has insurance. So even though the list price is $300 are people really paying that and you come to find out and correct me if I'm wrong here. The system is so complicated that even if you have insurance, sometimes you are paying list price you're paying different prices is that something that you found as well Lauren Stanford 15:34 was prices are really important because a there are people who are uninsured and be when you're on a high deductible plan, you're paying lowest prices until you meet your deductible. So if you have a $5,000 deductible, then you are paying those lowest prices until you hit that 5000 marks and you know how many bottles of insulin someone may need in the first month of the year. I mean, that could be pretty close to five thousand dollars and a lot of people don't have that David Mitchell 16:02 out of pocket. So well and I would add that in some plans, insurance plans, even after you meet the deductible, you will have a co payment or coinsurance and frequently that's based on list price. That's certainly true in Medicare. You pay all of your out of pockets based on list price. So list price really matters. And I think it is somewhere in the range of 65% of people who pay for some or all of their medications through the year based on with price. Stacey Simms 16:41 David, you mentioned earlier, some solutions. Some you said yet. I really liked that. When you said there's this is you know, there's not solutions yet. Can you talk a little bit about some of the things that Congress is considering and also you mentioned a couple of them but help people who are listening Try to make a difference. am I calling up my representative and saying vote on this? am I writing letters? What can we do? David Mitchell 17:07 Well, you can come to patients for affordable drugs.org and share your story with us because we will see to it that the story gets put to work making the case for why this problem needs to be addressed. And then if you're if they're interested, we'll be in touch after they leave their story and not for money because we don't ask patients for money, but to let them know of times that they can call their right their member of Congress or state legislator to speak up for reforms. What are some of the reforms? There is a bill in Congress right now and it may be voted on in coming weeks, called HR three, which is a very comprehensive bill in the House of Representatives that allow Medicare to negotiate over drug prices, and was set as a cap a number that is no high Or than 120% of what six other wealthy nations paid for their drugs. This would lower prices in this country dramatically, because we pay two to three times what other countries pay for their drives. HR three has other good features would cap out of pockets for people on Medicare, it would include inflation caps, so their prices can't be raised more than inflation. year over year. There's a bill in the Senate that is bipartisan, being championed by Senators Grassley and why didn't that would have inflation caps, again, making sure that drug makers can't price gouge by capping increases year over year at the rate of inflation. And the Trump administration has thrown its support behind the senate bill and the Trump administration may be about to bring forward April causal only covering Part B drugs. Those are drugs administered by doctors and nurses in hospitals or doctors offices that would use reference pricing international reference pricing to literally lower the price of Part B drugs to small sliver of drugs. It's only a pilot program, but it's very significant that the administration has brought this idea forward. So there are a number of proposals that are floating around. There are a number of other dynamics in play right now. And I'm laughing It's not funny, but there is a lot of obviously political energy being sucked out of the room by the impeachment process and the partisanship that exists, but I can tell you for sure that if Democrats and Republicans Both in Congress and in the White House could get a deal on drug pricing, they would all really like it. Because there's so much anger and energy around this issue. They want to go home and campaign on having done something. So we are trying to leverage that...
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Ask The D-Moms: Driving, Independence and "Holding Hope in our Hands"
02/12/2020
Ask The D-Moms: Driving, Independence and "Holding Hope in our Hands"
Ask the D-moms is back! We’re tackling leaving kids home alone, keeping perspective when you’ve been in the diabetes community for a long time and driving with T1D. Moira’s daughter was behind the wheel before CGMs and Stacey's son just got his permit. In Tell Me Something Good, an amazing way to raise awareness. We’ll talk about the .. and its’ going on right now. 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 0:27 This week, ask the D moms is back. We're talking about leaving kids home alone. Keeping perspective when you've been around this community a long time and driving. Moira’s daughter was behind the wheel before CGM, which had one advantage: Moira McCarthy 0:42 The good thing about a blood glucose meter and a driving teenager was I had proof whether she had or had not checked her blood. You are no longer going to have that. And so I don't know other than crossing your fingers and just keeping reminding them I don't know how else Stacey Simms 1:01 I have an idea. You'll hear what my idea for kids with CGM is. It's something they can do before they buckle up in Tell me something good an amazing way to raise awareness. We'll talk about the run across America. One man going from Disneyland to Disney World. It's going on right now. 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. So glad to have you along. Hello to new listeners from Maine. I spent this past weekend in South Portland, Maine, talking to the PPODS. I love that name. Parents and providers of diabetic children. It's got a little logo with peas in a pod. Very cute stuff. Now I'm taking a little bit of a chance saying I was in Maine this weekend because as you know, I do tape this podcast a couple of days in advance. And as I'm getting ready to go to Maine right now Actually, it looks like there's some snow in the forecast. So fingers crossed, that all goes well, and that my plane takes off on time, and that I wear the correct footwear. You know, I used to live in Syracuse, New York. I'm from New York, and I lived in upstate for 10 years. I had all sorts of boots and coats, but I moved to Charlotte 20 years ago. Most of that stuff is long gone. So I was really hoping for Sunny dry weather for main. But it looks like that is not to be so yes, I'll be posting on social media about how it goes. But assuming all as well, I make it there and back with no delays. Fingers crossed. I'm sure it'll be a great time. And of course as you're listening, it was a great time. It's one of those funny things that I thought about a lot especially when my kids were younger about the differences raising kids in the south and in the north. My sister still lives in New York and her kids were growing up. She would send me the cutest pictures but they would in snow pants and snow shoes and jackets and scarves and gloves. And I was throwing my kids at the door, not necessarily with flip flops all year round, but pretty close to it. Benny, I don't think owns a pair of long pants. He basically wears shorts, even when we get a flurry or two here. But I also always thought about diabetes, and how much more difficult it must be to manage all the gear for kids, when they're all bundled up. You know, you do hear about static issues with some of the diabetes technology and other stuff like that. And I was just always really happy that I didn't have to mess with it too much living here in North Carolina. All right, I'm going to be talking to my friend from the northeast. My friend Moira McCarthy, lives very far from me, but we'd love to get together virtually every once in a while. And I'll be talking to her in just a minute but first Diabetes Connections is brought to you by One Drop. And you know, I spoke to the people at One Drop, and I was really impressed about how much they just get diabetes. And 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 calm and click on the One Drop logo. My guest this week is my dear friend and fellow D mom. Moira McCarthy, Moira is of course a renowned writer and author, a speaker and advocate, a professional travel writer and much, much more. Her daughter was diagnosed at the age of six more than 20 years ago. And in this go round, I get a little selfish with my questions. Yeah, I have a question for more. You know, Benny just got his permit to drive in early January. And I wanted Moira’s advice. So we talked about that. And we, you're going to hear us kind of puzzle out some things on the spot. We came up with a couple of ideas. And we didn't talk about this ahead of time, and I debated editing some of it out. But I think it's kind of fun to listen to the wheels turn. So you'll hear that and we also talked about when is it okay to leave your child home alone. And then we got on a bit of a soapbox about being blunt, because we're very blunt and the blowback that we both take for that. I will link up all of the stuff that we talked about here, including I mentioned a blog post that Moira wrote back in 2013. And you'll know it when you hear it and I will link it up at the episode homepage. So here is my chat with my fellow D mom. Moira McCarthy. Hello Moira, it has been too long. How are you? Moira McCarthy 5:45 I know the holidays went by 2020 started whereas the year going I am really good. I just got my hair did and while I was there, I was thinking all this is perfect because I'm staying and I are doing the podcast and then I remembered that they can't actually see you on the podcast. So people should just assume I've always had my hair dead right before it I Stacey Simms 6:08 always look beautiful. It's so funny with the show because a lot of times when we do these interviews, you know, you can open up the video window, but half the time I'm in my pajamas, or you know, it's late at night, and I don't want I don't even want to show myself to the person I'm talking to. Maybe one of these days we'll do a video podcast, but not today. So I've been dying to talk to you because right at the beginning of the year, Vinnie got his permit now in order to drive in North Carolina. I know in North Carolina. No, he's like four. Yeah, exactly. You can get your permit here at 15. And then you can get your driver's license. It's a graduated system, but you can get your driver's license at 16. So a lot of kids like my son at 14 and a half, you know, go to Driver's Ed, and then they take the the written portion, then they take the driving portion and then they're behind the wheel and that's where we are So I was so happy to talk to you because we're a few weeks into this now. But what do you think of driving and diabetes? I know it was a little different when when Lauren was driving, but can you share your experiences on that? Moira McCarthy 7:12 I it wasn't that much different. The first thing I will tell you is Lauren is my second child, my older daughter is four and a half years older than her. And so we had experience teaching a child to drive before and I can honestly say that, I think that Lauren having diabetes made me take it all more seriously and do a better job than I had with her sister. So I think it's kind of a benefit. And one little example I can think of off the top of my head and then we can talk about details about kids with diabetes and driving and what they should do is um, I remember realizing that was really important to teach Lauren, my daughter with diabetes, how to pull over safely if you had to pull over suddenly for some reason for her it would be a low blood sugar or something right. And I realized that I don't think I ever taught my daughter that like, I think if you just say well pull over as soon as you're low, they're going to, they could pull over. And so place it, it's really dangerous to pull over, you know, instead of like go to the nearest exit or, you know, if you cannot make it there call 911 type of thing. And so that's just one example of many that I think that it caused me or led to me to do a much better job. Stacey Simms 8:22 If you're listening and thinking, of course, they're gonna know how to pull over, get me just you've never driven with a new driver, because it's amazing what they don't know. You think they've been your car for all these years? They must pick up on everything. But I never taught Leah, my older child who's now 18 you know, I never taught her how to pull over safely. That's going to be lesson number one when she comes home next, Moira McCarthy 8:41 because seriously, you can say most people must but how many times have you seen people pulled over like on the median strip side instead of the other side of the highway? You know, or or up next? What jersey barrier when you're like, No, no, don't get out of your car there. So as far as kids with diabetes, we were big problem. opponents have a contract for driving. And you sign the contract right at the point that he's at now, when they begin driving, and you sit down together and you discuss it, and there's actually a chapter in my book on driving and there is a sample contract. I'll tell you in a moment what I would add to that, because that was written five or six years ago, but you come to agreements together on what the expectations are, and then you both signed the contract. And for us, we did have low blood sugar amount that we expected her to pull over, if she got that low. And then we didn't really have one for high and we can talk about that if you want to. But our agreement was that if she forgot to check before she drove, she would have the keys taken away from her for a period of time. And sure enough, the first month, she had her license, she did it and I had to take her keys away for within that day, I had to drive her everywhere again. I say well, that's not a punishment if you drove them but it was a punishment. So with the Contract everything is out in the open and clear. And you as a parent have to stick to it and your child has to stick to it too. Stacey Simms 10:06 So when I said things are different, all I really meant was CGM, which obviously not everybody has. Moira McCarthy 10:13 Yes. So I will tell you what I would add to that contract and what I think about CGM and then we can talk about it more. I personally think it's super important that your children never ever, ever, ever look at their CGM while they're driving. Now, that doesn't mean they shouldn't use it. But just like a cell phone, it should be put away somewhere. And if they hear the sound, they should proceed to a place where it's safe to pull over and look at it pulled over. Because you know, and I know, it only takes two links of an eye if that for a kid to look down at something else, and look up and end up in a bad situation in a car. Stacey Simms 10:52 Yeah, that's a great point. I was just thinking of checking the CGM when you start the car and I think a lot of people would be okay with their kid glancing at it rather than doing the finger stick. That's a personal thing I think that parents have to decide. But what's interesting is so Benny has an app from, I guess it's from the DMV, it's probably not, it's probably from a third service that the NC the North Carolina DMV is working with. But it's an app on his phone to keep track of his hours of driving. So instead of filling out the piece of paper that my daughter did just a couple of years ago, when he gets behind the wheel, he first opens the driving app and clicks on or whatever the heck he does. And then he opens the CGM app, and looks at that as well. Yeah, so I'm really happy because he's getting in the habit of just checking something, right. He's got to pull out that driving up every single time. So we're making him look at the CGM, too, but it never occurred to me to tell him don't look at it while you drive. I mean, obviously, his phone has to be away and that sort of thing. But I can see where he would think, well, this is a safe thing to do. I'm trying to figure out what my blood sugar is. Moira McCarthy 11:52 Yeah. Every time I mentioned it to a parent, they're like, but but it's safe because it's their blood sugar. I'm like no. You cannot let a teen or any driver for that matter. Look down at a screen when they're driving even if you feel like they're just glancing. It's in my opinion, the most important thing and driving and CGM is that. Stacey Simms 12:13 Yeah. And just a little bit of a heads up for people who may not know. And I'm going to say this, but I'm going to give a warning, my own warning at the end. You can now if you use a dex calm, and maybe there's other CGM that will do this. You can now say, hey, Siri, or Hey, Google, what's my blood sugar, you can actually do that in your phone. However, I still be really careful about that while you're driving. I don't think a lot of teams are driving for hours and hours and need to constantly assess their blood sugar. So that's my warning is even with that. I would still not want my child constantly checking blood sugar. So I just don't think it's safe and it didn't occur to me until you brought that up more. Moira McCarthy 12:48 The interesting challenge for you parents, such as yourself, putting Benny on the road is the good thing about a blood glucose meter and a driving teenager was I had Proof whether she had or had not checked her blood, you are no longer going to have that. And so I don't know other than crossing your fingers and just keeping reminding them. I don't know how else Stacey Simms 13:13 I have an idea. contract you get behind the wheel, you take a picture your blood sugar, you don't need to send it to me at that moment. Moira McCarthy 13:21 That's a really good idea. But I wouldn't make them I send it to you because I'm not sure that I would sit home. Let's talk about this because I don't know the answer. Will you sit home and watch his blood sugar's on his CGM when he's out driving around in the car? Huh? Well, I don't know. I think I would say no, but Stacey Simms 13:44 Well, I'm gonna say I'm going to be honest. I'm going to say I will glance at them, but I will rely on the alarms. So I think and he and I will talk about this as it's funny to think about this as we're recording, but I think what we'll do is if he hits a certain number, then you can expect a phone call For me, not a text, you know, but maybe a phone call, but I don't think that number is going to, it's going to have to be low, you know, and just to check in on him, but I also don't want to distract him. So yeah, Moira McCarthy 14:12 this is a good question. Stacey Simms 14:14 But all the phone calls now we're you know, we're hands off. So but there's but it's also not legal in every stage talk on the phone when you're driving. Oh my gosh, what a thing we've gotten ourselves into. Right back to us try figure it all out. But first Diabetes Connections is brought to you by Real Good Foods. I love this stuff. They're so easy. They're so convenient, and they're good and they're good for you. One of the fun things about going to the Real Good Foods website is not only can you see all of the products, I mean, I usually buy it in our grocery store. It's really nice to just have it in the freezer there but all of the products are online, and then you can go into recipes. And if you've heard me talk about this before you might be thinking recipes isn't the stuff pretty much ready made. It is But then they have all this fun stuff you can do with it, and different ways to prepare it and mix and match a stuffed chicken power bowl. Spicy Italian sausage lasagna. I'm not sure what this is about pizza fries and ice cream. Okay, you're gonna have to go check it out and see the recipe for yourself. They have a lot of great offers, and you'll find out what makes them so good, but you really don't know until you try them. Find out more just go to diabetes, connections calm and click on the Real Good Foods logo. Now back to me and Moira and we're working out this driving and CGM thing in real time. Moira McCarthy 15:43 No, I think this is really good. I think we can think this through. I think that what I would do is, like you said set a parameter but also if I see it, give it a little bit of time. Like I wouldn't assume the minute I see it, that he's driving and not Although I don't know, I think the best thing I know everybody's doing it a different way now, but I think the best thing might be not to watch them from home because they need to learn how to manage their blood sugars in the car on their own. Stacey Simms 16:15 Yeah, I think I'm still gonna have him take a picture every time I begin. Unknown Speaker 16:20 Yeah. Unknown Speaker 16:23 You just have to send it to me. Unknown Speaker 16:24 Right? And then every once while like I would Stacey Simms 16:27 do, you could say I'm Moira McCarthy 16:29 just gonna take a look at that. Just show me and then you see. And also even if you never say that, he knows that you have the ability to ask him. That's the secret. I think that's a very good idea, Stacy. Stacey Simms 16:40 Why thank you. It's you win. Please trust but verify. I'm gonna talk to Benny. Maybe we'll follow up on this a little bit more and kind of see how it goes. But when I didn't I meant to ask you earlier when you took Lauren's keys away. I'm curious because she's such a shy and retiring type of person. How did that I mean, obviously she learned from it. It was important but she she was probably pretty upset. Moira McCarthy 17:01 She was upset, but not at me because we had that contract. And so it wasn't like I was saying, Oh, you did this and now this is your punishment. She made a decision to do something, knowing what the outcome would be. And so she was mad at herself. Stacey Simms 17:19 Hmm. Right. I got to get a contract ASAP. Yeah, you work? Yeah, it does work. We did it for social media. I do and it definitely works. Okay, Moira McCarthy 17:27 great. parents with kids without diabetes or learning to drive need one that like I said, I learned so much from my second kid with diabetes driving that I should have done with my first one. So, Stacey Simms 17:37 alright, so on to the next question, which was not for me. And thank you for answering my question and letting us hash this out a little bit. So I was at...
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Minisode #6: Whose Graph Is It Anyway? (A D-Parent's Struggle)
02/06/2020
Minisode #6: Whose Graph Is It Anyway? (A D-Parent's Struggle)
Watch your language! That's what Stacey is trying to tell herself this week. When you're a parent of a child with a chronic condition, it's hard not to say things like "our diabetes" and "our CGM graph." But it's not "ours" exactly, so how do we better talk about this? Stacey also shares her frustration as she finds herself falling into the trap of perfect numbers and trends. While her and Benny's experience with Control IQ has been wonderful so far, it's also bringing back some of that perfection trap she thought she'd left behind. ----- 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. Learn more at Amazon or diabetes dash connections.com. Announcer 0:15 This is diabetes connections with Stacey Sims. Stacey Simms 0:26 Welcome to another week of the show. I am so glad to have you here! This is one of our minisodes the shorter episodes that have become sort of the editorial page. If you look at the podcast as a newscast, as I often do. That's my background. I'm a broadcaster local radio and television for many, many years before I started the podcast. So the Tuesday episodes which runs longer and usually have an interview with a newsmaker. That's the news. And then these episodes have kind of become the editorial. And this week, instead of the headline stop doing this or think about before you do that, which I've been Doing a lot lately. I'm going to talk about why I think what I'm doing is wrong. And maybe you could help me with that. I know I'm not alone. But I'm going to tell you straight up here. I don't really have the answer for what I'm going to talk about today. And this is really about parents. But I'm hoping that if you're an adult with type one, you will listen to this as well. Maybe it'll sound familiar to you, maybe your experience can help us. So this is all about my struggle, to, in a nutshell, stop thinking about it as my diabetes. It's not I know this in my brain. My son has type one diabetes, he was diagnosed right before he was two. We have been living with this for 13 years. And sure, my family is affected by diabetes. My family has to deal with diabetes, but my son HAS diabetes. And I'm kind of exaggerating, but you'll get a better idea in a minute why I'm saying it in such strong terms, because I know this is not helpful. So I'm going to tell you a story. This story happened in December, a couple of weeks before we got control IQ, the new hybrid closed loop system from Tandem. It does tie in, I'm going to tell you about our experience with control IQ, and then how it relates to all of this. If you've seen me talk or you read the book, you know that I'm really fighting against this pressure for perfection. And I think and it makes me laugh that a lot of people like I was just in Raleigh this past weekend talking to parents about this. A lot of people think that I now have this down pat that I know, that I that I am perfect at not being perfect. And I think what's really funny is, it never ends, right. There's no finish line to parenting, where you're like, Whoa, great job. I'm, I'm all set. right good for me. I did it. I mean, there are big milestones, like college and when your kid moves out permanently, but I really don't think that there's a point at which we can say, that's it. So we're all trying to improve. And I think this story will highlight really just What a dingaling I can be sometimes, because this stuff isn't easy, right? And we're always trying to improve. So let me tell you the story, and then you tell me how to improve. Alright, so this happened, as I said, in early December, so almost two months ago now, Benny was right in range before bed. He was hovering right around 125. And for the last few weeks before this, he'd been dropping about 15 to 20 points overnight. That was it. Right? Just a little drop and then steady. So that was a fine number to just leave alone. But he texted me because this is how we communicate in my house, even if we're in different rooms. Right across the hall. He texted me a few minutes before I was gonna go in and turn out his light. And he texted me I feel really low. In my head looking at the dexcom I said, You're not low. You're 125 I don't want to treat that. You're going to mess up our great trend. And you're just going to go high. You're going to mess up our great numbers. I didn't say that out loud. I went into his room and this is what I said. I said, “Really? Because Dexcom says 125. You feel low?” And he said, “I feel like I'm dropping. See now I'm 117.” Even without the Dexcom number moving down a smidge. I knew my hesitation was selfish and misguided. Alright, it was dumb. He's not foolproof, but Benny knows his body. He has been living with diabetes for 13 years. And he felt low. And in my head, I'm like, “Stacey, come on. These are his numbers.” Did you hear me earlier when I said, you're gonna mess up our great numbers? I mean, I, it hurts me to admit that. But it's his number. It's not mine. It's not ours. So I said, “Okay, I trust you. Let me grab you a drink. Do you think you need more than that?” “Nope, just a juice box should be fine.” Benny sleeps with an apple juice bottle by his bed. But it's it's a full like 25 or 30 carbs and he didn't need that much. So I grabbed Little can of pineapple juice, and I poured about 12 to 15 carbs, like a juice box, basically, over ice in a highball glass, because sometimes it's just gotta be fun. And in my head, I was kind of feeling guilty, even though I hadn't shared with him. I'm trying to make up for that by the splashy cocktail. So he loved that. And he drank the juice and he went right to bed. Now, I assumed I was going to hear that Dexcom high alarm pretty soon. I mean, I went to bed, but I just figured out right, I guess I just gave him 15 carbs he didn't need but instead, I woke up at 5:50am like I do every day. It showed that he had stayed between 100 and 130 all night long. He had been feeling low, he did need that juice. While I am thankful that I didn't go into his room and say, “don't mess up our numbers” I didn't say what I was thinking out loud. It bothers me that I thought it at all. I mean, after all this time I do trust Benny with diabetes. I do respect his decisions. And I know that even though he is from perfect, right? He really is safe and happy. So why do I still have those thoughts at all? It's not about the good health outcomes. I mean, that's the first thing we think of as parents, right? We want our kids to be happy and healthy. And I would be lying if I said, Well, it was out of health concern. It was because I wanted to make sure that he felt good, and could sleep well and have a great day at school the next day. That's what I'm supposed to say. But it was about the straight-line graph. It was about wanting, I don't post them, but it was about wanting to not mess up the pattern we were on. I mean, what, would I really rather my son feel crummy and ignore what he has to say to me, showing him I don't trust him. I don't respect him to see that kind of graph. Ah, so how do we get past that? Not only am I not answering that right now, I'm going to tell you another example of how it's now getting worse. And this is because of control IQ. First, let me say I love this system. tandem is not a sponsor of the podcast. They're not telling me what to say. Not that they ever did. But man, this is an incredible piece of software for us. I am so excited. We've had it as I'm taping the podcast, we've had it for about 10-11 days now. And in the last seven days, Benny's blood sugar has been in range 70% of the time at minimum, I think only for two days. For the most part, he's been in range with less work a lot less work. I don't think in the last seven days he has bolused for a correction, it's only been for food. Now the first couple of days we did have to do a lot of adjusting. And this is very typical. If you are on any kind of hybrid closed loop system and this is includes the DIY systems is my understanding the people I've talked to, you realize right away that most of your pump settings that have worked pretty well for you all this time are wrong. It's just that we are manually compensating for defaults. We're paying attention like we're supposed to, we're checking that Dexcom, we're poking the fingers a million times a day, right? We're really manually using the pump to get the most out of it. And not letting it run on its own. Because it's dumb, right? It's not a smart pump. Most of these pumps, most of the programs that we've had until recently, they're just a dumb brick that gives you insulin when you tell it to. And when you switch over to the automated systems, you really have to trust and you really have to adjust. Because not only is the insulin duration all for most of us, but your basals are off, your sensitivity factors. I mean, I'm not going to go into too much detail here of all of the changes we had to make. But you do have to take your time with this. In fact, as I'm telling you this, we are still at the very beginning of making the changes here, even with those great outcomes we're seeing. I haven't changed anything in about five days. I've talked to Benny's endo, and we're going to wait another week probably just to kind of let it play out and see what really needs to adjust cuz it gets harder, right? The more in range you are, the less you want to tweak, but I know we can make it even better. But in a nutshell, we had some incredible lows like sustained under 50 lows that we hadn't seen and of course we overtreated for those. And then we had the perfect storm over a weekend of a birthday party that was an overnight party, huge dinner that he completely forgot to bolus for and then tried to make up for half an hour later at a bent canula. So that was high, high, high high for hours and hours and hours, which you know, of course, messed up my control IQ graph. And I am not kidding. Yeah, I know he was high. I know that he said he felt fine, but you know, he didn't feel great. I know that while Yes, his health is my number one concern in my little brain. I'm thinking, well, I want to show our control IQ graph and how great it looks. And I want to be like all those other people I'm seeing with their great results right away and isn't this supposed to be amazing and I want better results. And that's what I was mad about. You know, I feel like a dummy admitting to this. But I know I'm not alone, because I am seeing a lot of my mom friends. And a lot of people I don't know, on Facebook, who are not necessarily saying it as plainly as I am, but who are definitely struggling. And sure we're struggling with the actual numbers. But I think we're also struggling with the expectations and we're struggling with our kids are old enough to do a lot of this themselves. So we're struggling now. With How do I and I'm doing this to Benny? How do I not helicopter, right? How do I not say to him five or six or seven times a day? Did you bolus? What did you do? What's going on? What do you think? How about this? Did you check? I mean, we don't talk about diabetes all that much in a day to day basis. But with control IQ and wanting to know what's going on with it, and wanting to be able to tweak it and make the adjustments. You have to talk about it. And we're out of practice. So I said to Benny, a couple of days in Look, you're just going to have to be patient with me, you understand why? If I'm driving you crazy, you have to tell me. And if you just want to give me the pump and walk away, so I can see what you did, that's fine too. But we have to find a way that I can see what's going on without driving you bananas, and that you can feel good that I'm still trusting you, I still respect you, I still think that your decisions about your body are ultimately the most important. But I need to help you with control IQ. Because at 15, and everybody may be different. But my kid is not old enough to really go through this and troubleshoot. And he's not interested. I mean, he didn't even really want to watch the training. He wants me to tell him about it. And that's fine for us, because we've talked about it now and I feel a little bit better about it. But and I'll share another embarrassing thing. I just said that, you know, the last seven days, boy, he's been in range to 80% of the time. Well, today he's kind of struggling as I'm recording this. I'm not exactly sure what's going on. But he got to school and he went over 200 He probably ate some thing, right? I mean, it's not it. You don't have to be a genius to figure this out. And then he went back down. And in my head, I'm like, should I text him? No. Should I find out? What's going? No, you should leave them alone, Stacey, which I did. But I'm also thinking, Oh, I really hope that we're in range. But in my head, I'm thinking, Oh, I really hope we're in range more, because I don't want that 80%. It's messed up. I mean, come on. Oh, this stuff is not easy. I think acknowledging that It's troublesome to think this way, is important. I think acknowledging that I'm still going to think this way, is important. I'm trying to work it through and change it. Thank you for being my therapy on the show this week. Maybe I'm yours as well. If you have similar thoughts. I'm not really sure how to get past it, other than to acknowledge it and talk it out and laugh at it a little bit. Do you have a better idea? Do you have a way that all of us who are thinking about these lines And graphs as ours, and I'm not talking about younger kids, it's so different when your kid is two, or four or seven, or even nine. But once they're in middle school, you know, this transition, to independence, their own care for them to think about it, to take ownership of it, to know that you trust and respect to them. Even if you're questioning, I trust and respect my husband doesn't mean I don't ask him questions, right? It's a difficult transition. But it's such an important one, because soon enough, he's going to be in college and independent, and he's going to be out on his own independent, if I'm lucky. So I do think it's worth discussing, even if it's a little embarrassing. And I was at a JDRF conference this past week that I mentioned in Raleigh, and I brought this up, I was with three adults with type one. And I mentioned I was going to call myself out on the podcast this week because of my graph thinking about it as my numbers. And their reactions were really interesting. They didn't tell me I was a terrible person. They didn't tell me I was a helicopter mom. They just said yeah, it's Gotta be tough. It's got to be hard. But it's really important to know those are not your number. It's not your diabetes. I think something else that's important to keep in mind is, this is so new, right? These closed loop systems are so new, there really isn't even a good instruction manual for how to know what your pumps settings should be adjusted to 10 history, the great job with the training, I think endocrinology practices are doing a great job with helping people but let's face it, most of us are getting advice on how to adjust this stuff from Facebook, which is not the best place ever, because I'm seeing a lot of people had a lot of highs, we had a lot of lows, the advice there is not going to be comparable, right? So I'm going to give myself some grace. I'm going to give myself some patience. And I'm going to hope that I get better at this, that I continue to see the humor in this that hopefully Benny continues to see some of the humor in this and that I can continue to watch my language. I don't mean keep it PG. I mean to watch my language so that I am not saying my, when it comes to graphs, or diabetes, or more importantly, maybe most importantly, about how Benny feels, right? Isn't that the most important thing? I can see that number, but it's really about how he feels, how he wants to react at 15 years old, it is well, to the time to let him do that. So I hope I can continue to work toward those goals. Well, now you know why I am the world's worst diabetes mom. I really hope that if you get a chance to check the book out, you let me know what you think about that as well. It is available as an audio copy and you can get that for free. There's lots of opportunities there. I will link up all this stuff on the episode homepage. There's also a transcript of every episode beginning this year, and that's very popular now. So I'm hoping to go back soon and transcribe more of the episodes. We have almost 300 of them now. Holy cow back next week with our full Interview episodes. In fact, next week more McCarthy is back, ask the de moms is back. And we're gonna be talking about a variety of things, answering your questions, including talking about driving, because Benny just got his promise. And yeah, we're trying to figure all of that out as well. Oh my gosh, this stuff never stops. So I will see you back here for that on Tuesday. And in the meantime, be kind to yourself. Benny 16:27 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged. Transcribed by https://otter.ai
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What Is Monogenetic Diabetes & Why Should You Care?
02/04/2020
What Is Monogenetic Diabetes & Why Should You Care?
This week.. what is monogenetic diabetes and why should we – on a mainly type 1 diabetes podcast – care about it? The majority of people with monogenic are misdiagnosed as type 1. People like Kristin Skiados who thought she’d lived with type 1 for 38 years and her daughter Ava, was also misdiagnosed. We’ll talk about how this could happen, what it means for the rest of us and what monogentic or MODY is all about. In Tell Me Something Good, how a little sister’s diagnosis changed a sibling's outlook and career.. And what the heck is a diabetes merit badge? 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 (rough transcript, please forgive grammar, spelling, punctuation) 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, what is monogenetic diabetes? And why should we on a mainly type 1 diabetes podcast care about it? Because the majority of people with monogenetics are misdiagnosed. people like Kristin Skiados who thought she was living with type one for 38 years. Kristin Skiados 0:44 It really was a phone call that was the answer to a new life. And it was probably the first time that I was speechless on the phone and the fact that That this meant there was a possibility to not be on insulin was just amazing Stacey Simms 1:06 Kristin’s daughter was also misdiagnosed. We'll talk about how this could happen, what it means for the rest of us and what might have genetic or MODY is all about in Tell me something good. How a little sister's diagnosis changed a sibling’s outlook and career plans. And what the heck is a diabetes merit badge? I got them. 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 here on Diabetes Connections. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host Stacey Simms. My son was diagnosed 13 years ago right before he turned two I don't have diabetes. I do have a background in broadcasting and that is how you get the podcast. Hello to any new people joining us from the Raleigh Durham, North Carolina area. As this podcast is airing, I am just back from the JDRF type one nation summit in that area and thrilled to meet many new people and see some familiar faces. Not too long a trip for me. Of course, I'm in the Charlotte, North Carolina area, but always fun to go to those conferences, see people in person, talk about the show, talk about the book, the world's worst diabetes mom, and make those connections that I care so much about. And this is the second time that I have taken the diabetes merit badges on the road. I am so excited about this idea. This came to be I guess it's one of those ideas that came kind of suddenly but then was also years in the making. I have always thought that we deserve like a gold sticker or a huzzah! Or hurray when something goes right in diabetes land. You know,There used to be a joke in the community that when your meter read 100 that confetti should come out of You know, stuff like that. But when I was writing the world's worst diabetes mom I even mentioned in one of the chapters when I talk about the first injection I gave Benny at home that I really felt like I had done something monumental and I wanted to you know, shout it to the world. And that's how the nighttime ninja sticker was born. So they are kind of silly. Yes, there is one that is a nighttime ninja. These are actual stickers. When I say merit badge, I mean, these are stickers that you can buy things like date night diva, which means you had a conversation without checking your CGM data 1000 times hold music marathoner finally spoke to a supply company representative dia-diplomat, calmly explained that sugar doesn't cause diabetes, insurance hoop jumper, and on and on. A lot is are geared to diabetes parents, which is obviously my perspective, but I teamed up with Rachel at diabetees who's a previous guest to the show and very popular in the community for her amazing shirts at her great Etsy store. So I'm going to link up in the episode homepage and on social media, more about these stickers, you can buy them in batches. I also have a sticker that's not in the Etsy store yet. And it is wanted for not waiting. It's the DIY cowboy sticker. Because that is for my friends at night scout and all of you who are not waiting, we're gonna do something fun with that, maybe a fundraiser for them. We're still working out the details. As I said, this came on kind of quickly. I decided in December that this might be a really fun idea. And I called Rachel and she was like, Yes, I'm in and I gave her a bunch of the ideas. And she came up with a couple of them herself. And then she's a genius when it comes to the pictures and the drawings and it really came together beautifully. So right now, there will be a link in the episode homepage. Diabetes Etsy store is the only place you can buy the stickers right now. And I have them on my book tour and Rachel as she goes out and about the conferences, she will have them as well. I'm really excited about them. They're very funny and silly and just a little bit of a pick me up. And if you have ideas for these as you see them and you can see all of them and her Etsy store, let us know we will definitely add as we go if they're popular and people really want them. Love to hear what you have to say A quick note, this interview is longer than usual. But it is a very complex, frankly, and a very interesting subject and I didn't want to stop talking about it. So I'm doing something a little different. For this episode, we're going to do about half the interview. Then we'll go into our Tell me something good segment. And then I'm going to pick the interview back up. You can always listen to episodes on your own schedule, of course, but I just felt this was a really nice way to lay this episode out with an interview. That by itself is more than 45 minutes. Regardless, the whole thing will be transcribed on the episode homepage. I am thrilled people are loving the transcripts. So if you are one of them, please reach out and let me know. I'm so excited to finally be able to offer this I know a lot of people wanted it Thinking about trying to go back and do more episodes in the past, we shall see. All right diabetes Connections is brought to you by Real Good Foods - high protein, low carb, real ingredients. easy to find in a store near you, you can just go to the website, click on that store locator. Type in your zip code in our area. I can find them at Publix, Harris Teeter and at Walmart. And if you'd like to order, their website is fantastic. Lots of great options. I mean, all of the options are on the website. Great breakfast sandwiches, grain free, high in protein, low in carbs, because they use ingredients like cauliflower instead of processed flours or processed starches so you don't get those weird sounding ingredients or weird preservatives. And you can find the list of ingredients right online very easy for the all of the ingredients are on the website, find out more, go to diabetes, connections dot com and click on the real good foods logo. My guests this week are here to talk about monogenetic, diabetes The type of diabetes caused by a genetic mutation. There are about 10 different types of diabetes that are genetic like this. And we are talking about a specific one today. These are all very rare. Together, they account for about one to 2% of all types of diabetes, but they are very often misdiagnosed, and usually misdiagnosed as type one. If you have monogenetic diabetes, you almost always don't need insulin, you take oral medication, so it is a big deal. Now I have to admit, I struggled a little bit with this interview. I remember vividly researching, when Benny when my son was diagnosed, I was so hoping that it would be monogenetic, MODY or something else. And I struggle now, because there's not an easy test for this. You can't just call your doctor and get a quick result. As you will hear it is more complicated. So as you will hear me ask, what are we supposed to do with this information right? My guests are Kristin Skiados who lived with type one for 38 years before genetic testing showed she didn't actually have it. And we'll hear briefly from her daughter, Ava, also misdiagnosed for years. And Dr. Tony Pollin, a Board Certified genetic counselor, a human geneticist, and she works with the mano genetic diabetes research and advocacy project that is aiming to get universal access to diagnosis and individualized treatment. So here is my interview all about monogenetic diabetes. Dr. Pollin and Kristin, thank you for talking to me. I am fascinated with this and I'm so excited to learn more. Thanks for spending some time with me. Dr. Toni Pollin 8:43 Thank you for having us. Stacey Simms 8:46 Let me start with with you Dr. Pollin, let me just ask you, what are we talking about here? You know, I know people we know there are different types of diabetes. But what is mono genetic Dr. Toni Pollin 9:00 So if you just kind of, you know, break down, monogenic, you have mono, which is one, and then genic, which is gene, what it means is that there's one gene that's really important in certain cases of diabetes. And we actually know that almost all diabetes is highly genetic. It has a lot of hereditary influence, you know, so their genes, their variations in our DNA that we inherit for from our parents that act in concert with other factors to determine whether or not we get diabetes and whether or not we get type 1 diabetes, or type two diabetes, which even itself is a lot of different diseases. But for some cases of diabetes, the genetics is actually a lot simpler. There's some very specific change, like a misspelling and a gene that causes a person to have diabetes makes them very, very likely to have diabetes really explains most of it. So when we say monogenic, we mean that the cause of the diabetes can largely be explained by a change or difference or mutation in one single gene and that person, Stacey Simms 10:07 and how is it treated? Dr. Toni Pollin 10:08 how its treated is it depends on the type. So it's going to sound a little bit contradictory because I just said monogenic. But there's actually several different forms because depending on the individual, they might have their several different possible genes that can be involved. But when an individual has monogenic diabetes, it's one gene. Again, that's explaining most of their diabetes. And so depending on the type of diabetes, the treatment will vary, so some types of monogenic diabetes, the diagnosis doesn't make that much of a difference, but the one that's ones that were most interested in and actually the most common types, that does make a difference. So there's one type of monogenic or one kind of group of types of monogenic diabetes called maturity onset diabetes of the young, and that sounds like a strange name, but that was an observation made in the 70s 60s 70s even earlier, when it was realized that some children had diabetes that looked more like the type that older people got. They didn't need to be treated with insulin and they actually some of them responded really well to oral medications. And so getting back to your question, which is how is it treated? Some people with certain kinds of monogenic diabetes called sometimes these types are called Modi, three and moody one, and they're caused by genes and changes in genes.. And those are treated with low doses, a very old class of drugs called sulfonylureas, and these are drugs that help the pancreatic beta cells to make and release insulin, Stacey Simms 11:44 those medications is that like Metformin or these oral medications? Dr. Toni Pollin 11:48 There are medications but what's interesting is back when these types of diabetes were first discovered, when it was discovered that you know you had these children who didn't quite fit either way, they were kids They were part of the way they why and maybe part of why they call it maturity onset diabetes of the youngest because they responded to the medication that was used in adult diabetes, Metformin did not exist. Back in the 60s, there was only one kind of oral medication, there's only really one medication besides insulin that could treat diabetes. And that was a class of drugs called sulfonylureas. So that's things like glyburide, and other drugs like that. And what those drugs do is they help the body to make insulin. They help to stimulate the body's capacity to make insulin and to secrete the insulin and really they said stimulate the body's capacity to secrete the insulin. And so the drug Metformin is is among many drugs. And sulfonylureas still use, but Metformin is actually safer. And so and it's, it's often the first drug that's tried and type two diabetes. The problem is if you think somebody has type two diabetes, and they really have one of these modes, These are these transcription factor types of diabetes, then they won't respond because their problem is in secreting insulin. Metformin helps you to respond to insulin. Metformin is what's known as an insulin sensitizer. So, Stacey Simms 13:12 but I took you down that road because I mentioned Metformin. Dr. Toni Pollin 13:15 So that's fine, though, because that's important. And that's actually ironically, one of the reasons why a misdiagnosis is even more of a problem today than it was a long time ago, because it used to be that people were treated with the type of drugs that actually work with monogenic diabetes. Yeah, so yeah, so but that's just one of the treatments. Now, there's another whole kind of class of monogenic diabetes that doesn't actually require any treatment. And so this is due to a partial deficiency of an enzyme called glucokinase. That kind of tells the pancreatic beta cells that there's glucose around and catalyzes a chemical reaction to people who have that form. They actually have a lifelong Mild hyperglycemia that if it doesn't have any other causes, then it's it's largely benign. And it actually doesn't respond very well to treatment. So knowing that you have that form, which is called glucokinase diabetes means that you could discontinue treatment. Stacey Simms 14:16 All right, Kristin, let me bring you on because you lived with what you thought was Type 1 diabetes for a very long time. Can you tell us your story? Kristin Skiados 14:26 Yes, I was diagnosed at the age of five, back in 1980. And I had all the classic symptoms of type 1 diabetes. As a matter of fact, when my parents didn't know what was going on with me, one of my friends moms was a nurse. And she said, geez, yeah, I think she might have diabetes, and I ended up in the hospital and the very high glucose. they diagnosed me immediately with type one, and I was put on Matter of fact, I was put on purified pork insulin, and then move to bovine and, and I stayed on insulin for a better part. Love for 38 years. I didn't move on to a pump when I turned 25. And life was just normal for me. I don't ever remember not being diabetic. And I think that was a good thing. I was so young when I was diagnosed, and I don't know what life is like, not having it. And I know it was an adjustment for my family for my siblings, because, you know, my mom made them do all the same things I did minus the blood sugars and the insulin. But they had to eat it and they had to have snacks and they had to get up early to and it just became a norm in our house. Yeah, I went to college, I did all these great things, traveled, played sports, got married my husband and had two kids. Stacey Simms 15:57 Alright, so fast forward then. So Your daughter Ava, who is now 11. She was diagnosed with type one as an infant. And I imagine that that was, you know, devastating not only because you you've already been through it yourself, but she was so young she was 15 months. Right back to Kristin in just a moment, but first diabetes Connections is brought to you by one drop, one drop his 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 doctor visit, your personal coach is always there to help, go to diabetes, connections calm and click on the one drop logo. Now back to Kristin, talking about her daughter's diagnosis. Kristin Skiados 17:17 You can have a little bit of the same classic symptoms that I had. A few things were different. And when I kind of looked back on it in hindsight, there were signals kind of all along, I think, you know, she had thrush in her mouth as an infant a few times. She always had yeast infections, diaper rashes. When I look back on it, we're like, oh, maybe this was the manifestation of this but when she was 15 months old, she was still 17 pounds. She was eating a ton of food. I mean, she was the top of the zucchini, whole sweet potato, half a chicken bread. You know drink milk yogurt. Then two hours later, we're drinking more milk or having more yogur getting up in the middle of night. He wasn't excessively peeing all the time. You shouldn't have frequent urination. But she was just underweight. You know, she was the amount of food she was eating didn't match what her weight should be. So I kind of had it in the back of my mind. Well, maybe she has diabetes. She had bronchitis before she turned a year old that we went and we got the blood work done. And her fasting glucose was not actually overly high. It was in I think, the 200 but she was diagnosed as type one. And we had compounded insulin, they had a you know, dilute her insulin because of her at her knees and, and it was devastating in the fact that this was something I never wanted her to have, you know, so there was this mother's guilt of my gosh, you know, she got this from me. And that was Very difficult to deal with and, you know, not so much myself having diabetes, but now my daughter was going to have to do the same things I have to do. And her life wasn't going to be normal. And we had to say goodbye to that normalcy was almost like a death. You know, it was the life that we knew was now gone. And we had to readjust and, you know, her insulin had to be on ice. I had to be cold all the time. So we were always walking around with our refrigerated bags, we have tons of ice packs, Stacey Simms 19:33 is it because it was diluted it had to be cold, Kristin Skiados 19:35 okay, and in where we live, we don't have compound pharmacy, so it had to be shipped from Baltimore. Well, and it's the same thing my parents went through this this...
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Minisode #5 - Stop Posting Sick Day Photos of Your Kids!
01/30/2020
Minisode #5 - Stop Posting Sick Day Photos of Your Kids!
Sharing photographs of our kids on social media has become second nature. But what happens when we post photos of our children in distress? Stacey says stop. No more photos of your child in the hospital, when they're feeling sick or in distress. What about "keeping it real?" What about fundraising? Stacey argues that there are better ways to accomplish important goals around chronic conditions like diabetes than posting photos which, ultimately, exploit and embarrass our kids. Links referred to in the episode can be found in the transcription below. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Beta Transcription - please excuse grammar, spelling & punctuation Stacey Simms 0:28 Welcome to a minisode of diabetes connections, one of our shorter episodes where I share some thoughts on one topic of diabetes management. I'm your host Stacey Simms, and my son was diagnosed 13 years ago just before he turned two. Before I jump into this week's topic, which I really feel pretty strongly about. I want to give a thank you to It just cracked me up. When I opened, I get the magazine. So when I opened it, I laughed only because of the picture that they shared. I knew it was coming, they had asked to review it in the fall, but I didn't know that there would be a full picture. And I certainly didn't know it would be so funny. It's a woman, you know, with the book over her face, kind of like, Oh my god, I can't believe I'm reading this. And I can't believe what I'm reading. But the funniest thing is that a lot of people thought that woman was me. It's not, but I can kind of see it. And it's so funny to think that even with social media and everything else, because this is basically a radio show, you probably have a picture in your head of what I look like, I always do that for people on the radio, and then you meet them and you're like, that's not what I thought they would look like at all. So if I get a chance to meet you, you can tell me what you thought I looked like. But anyway, thank you so much diabetes forecast. I really appreciate that. And thank you to everybody who's sharing the book. After you listen to the show today. You might say I really am the worst. But I really do feel very strongly about this. So let's talk about it. This topic of sharing photographs, of children in the hospital, sick day photos. This is something that is very sensitive to a lot of people. But let's talk about why I truly think it is a bad idea to share what I'm going to call these photos of your child in distress. So for the purpose of this episode, let's say children in distress includes hospital photos, Sick day photos, a child upset about aspects of care, like getting a shot or an inset. Any photo that shows your child in a moment of distress or pain or hurt. We see these all the time on social media, a casual post of a tough night of lows, you know, and a sleeping child with a juice box next to them or something maybe a little stronger. You know, we're in the ER today couldn't keep fluids down and needed hydration. And then you see the child miserable in the hospital bed. We see these photos used by organizations and news outlets, Beyond Type 1, JDRF, Diabetes Daily. I am affiliated with a lot of these groups in terms of sharing content, right? You've seen - they'll post my stuff, I'll post their stuff. But I think it's important to call it when I see it. And every time I see it, I just cringe. Now, I know what you're saying already, right? This is important. We need to show the real side of diabetes, right? We need to show more than the smiles when a kid gives himself a shot for the first time or you know, gets over the fear. If you listen to my longer show that airs on Tuesday, you know that every week we do a Tell me something good. And I very happily show pictures of those people who are featured each week, and I have been accused of being more positive and you know, too rosy sometimes. And, you know, but we're talking about realism. Right? Everybody says we need to show the hospital days they happen. We need to show diabetes isn't fair. Well, of course we do. Yes. Yes. We need to show that that is important. And I am all for realism. I promise it is not sunshine and unicorns and rainbows over here. But you know what we don't need to do to show that we do not need to exploit children. And that's what's happening here. These are kids who cannot give consent to be featured. They can't give consent. They're too young. And they have just as much right to their privacy as we do. How would you feel if someone took a photo of you at your most vulnerable, and posted it on Facebook? Let's just back up and think about this. And I will get to when I think it can be done and how it can be done in a way that educates and informs and brings out emotion and still protects the child. But right now, let's say on these photos of distress, I did a little bit of research on this and there are a lot of articles about social media and photos. There's not a lot of research because this is Still so new. And when I see research, I mean real scientific published paper, that kind of research. But I did find some interesting articles. And I'll link all of these up in the show notes on the episode homepage. She has a PhD in the impact of digital technology on children's learning. And she says that right now, sharing every part of our lives has been normalized by social media. But what happens really, when you dial it down is that it's a desire for a like, which is really a desire to feel connected, which she says is one of our biological drivers as a human, and it is needed to experience empathy. It does fulfill a purpose. Dr. Goodwin says and here's a quote, “For many parents when their kids are seriously sick, they have lost all control and their world is literally spinning out of control. When parents go on social media, they have a sense of control over their life again, They can post things and choose exactly what aspects of their child's sickness that they want to post.” Another article is from a She says, “We are all looking for support when our loved ones are not well, but when your child is running a fever or has a broken bone, please put down the camera step away from the screen. I'm sure if your child had a choice, they want to look their best to like you do. And your child would not appreciate a picture of them looking tired and rundown on the emergency room that we talk so much about patient privacy rules and rights. But what about the privacy rights of our little ones? Or do we think they just don't have any,” she says, I'm going to take this one step further. Because I do think while we're on this topic of digital privacy, it's a good time to sneak in something else. In my Facebook group. I have a local Facebook group in the Charlotte area that I started, I don't know, maybe five or six years ago and when I wrote the rules and regulations for the group, the admin announcements. Here's what I wrote. “Please think twice about any pictures you post of your children. A picture of a pump inset on a naked toddler’s backside may be completely innocent, but there are creeps out there. This is a closed group, but there is no guarantee of privacy on any social media outlet. Please, please crop pictures like this very closely. So we can't tell what body part of it is for your child protection.” And then I go on to say, “Same warning for posting pictures of your child in distress. This includes hospital pictures, pictures during illness, etc. You have our support and sympathy already, your child has his or her own right to privacy and may not appreciate being pictured online in such a manner. These pictures aren't banned. But take a moment to think about why you might want to post something like that.” If you listen to carefully you might be saying Stacey what? They're not banned in your group but you just got on your high horse and told us how terrible they were? Well, they're not banned in my group, at least, and they are banned at some other groups. But here's why I felt like banning them outright would take away the conversation and the thinking, if you know that you're allowed to post them if you really need to, perhaps you'll stop and think about whether you want to a little bit more. And whenever anybody posts it, I usually send them a very gentle, private message, reiterating what I already talked about here in this episode, we support you, we love you, we're so sorry, Your child is hurting. But why are you posting that picture? Can you please think about your child's privacy? Sometimes I wait, because if the child's really ill, there's no reason for them to hear from me when they're in the hospital. Don't worry, I'm not direct messaging, a parent whose child is in a critical situation in the hospital and saying, could you please check your photo on Facebook? I mean, really, I'm not that cold. But I do if they're not in an emergency situation. I do do it right away, but it rarely happens in my group anymore. What actually happens is we have conversations about why it's not a great idea, and what we're looking for, and what else we can do when someone's in the hospital. I mean, Benny had knee surgery a couple of months ago. And you bet I took pictures. We took funny pictures when they shaved his leg. I took a picture of his pump in the hospital gown. I took pictures of him and sent them to his grandmother, you know, going in thumbs up, that kind of stuff. I also took a picture of him coming out, because he was bundled up in so many blankets. He was so cold from the anesthesia coming out of it, he was fine. But that's not a picture he'd want me to post. But it was a picture he wanted to see later on. I knew he'd want to see how, you know, kind of funny he looked, but I knew he wouldn't want me to post it. So I'm not talking about not taking pictures, right. I mean, he had a terrible injury when he was about seven or eight years old, and we were in the hospital. And I took pictures. This was when we knew he was going to be okay when things had calmed down and he was stable. And I was sitting there with nothing to do feeling helpless. I took some pictures and sent them to my mom and my sister. And I showed them to Benny later on. I mean, they weren’t gruesome or anything. You know, if you're a longtime listener of the show, you may be thinking, I've never heard about this. And I'm not going to tell the whole story right now. You know, and I also it's a good time to point out that I don't share everything that's happened to Benny, I work hard to protect the privacy of my kids and my family in ways that make sense. So I have these pictures of him in the hospital at the time of that accident, but I didn't post them. I did mention earlier, there are ways to do this. So how do you do it? Well, when he was in the hospital for his knee surgery, I posted a picture of I don't even know some of the hospital equipment, right, the IV bag, I posted something and I said, here's where you know, we're going in, everything's good. I'll keep you posted. That kind of stuff. And I've posted pictures of him drinking a juice box, you know, he's low and you can kind of see in his face he's look you know what to look for. Rather than a more dramatic picture I've posted on I use it to my presentations. Several years ago, I took a picture of his bedside table, which was just it was one of those horrible nights it was covered with juice boxes and test strips and, you know, inset changes, it looked like a war zone. And that conveys the difficulty of type one diabetes in a very similar way. I posted this on my personal Facebook page, just to say, Hey, I'm going to be talking about this topic. And I was curious what other people in the community thought, and I got so much feedback. One of the pieces of feedback I got, which I thought was very, very interesting. And by the way, the vast majority of adults with type one that I heard from said, Please, please, please tell parents not to post pictures of their children. It really is something that I know people feel very strongly about. But I did hear from advocates who said, we need to get our cause across. We need to push we need to fundraise. I've two responses to them. One is we've been fundraising for JDRF and some other causes for 13 years. We have raised 10s of Thousands of dollars, we might be close to $100,000. If I sat down and added it all up, we have never posted a picture of Benny in distress. Has he been in distress? You bet. have I written about it? Have I talked about it? Sure. But we have found creative ways to show what goes on with diabetes. And I've never felt like I've exploited him to fundraise. And I know many, many other people who have raised a lot more money than me, who have never posted a picture of their child. I also heard from people about what the DKA campaign. Now, if you're not familiar, there is a campaign and it's a great campaign to diagnose Type One Diabetes sooner. There are so many cases of children and adults diagnosed while they're already in DKA, while their lives are in danger. The most dangerous time to be type one diabetic is before anybody knows that you are and the thinking was, you know, we need to show the faces of this. We need to show what can happen so that laws can change. And as I'm speaking about this, I'm also thinking about the insulin for all campaign and People who are dying because they're rationing insulin, but I'm going to give you the example of Reegan Oxendine and this is a little girl here in North Carolina. She was a toddler. She died. She had type one diabetes, it was misdiagnosed again and again. Finally she was hospitalized but it was too late. And her story has been told several times, I'll link it up in the show notes. but I bring up Reegan because it actually illustrates the point I'm trying to make that we can affect change and we can get the point across even if in this case, it is a terrible point, without photos that are exploitive. If you're familiar at all with Reegan’s story, what may come to mind is the most impactful picture in my opinion. And it's not her in the hospital, and it's not her looking ill and in distress. Her Shoes fit in her mother's hands. I'll post this picture. It's incredibly powerful. It's disturbing in its own way. But it is not exploitive at all. And it is a photo that really affected change. The law changed in North Carolina. Now is it as a strong laws everybody wanted and we've done episodes on this, I will link up more information on the episode homepage. As you can see exactly what happened. It's frankly, more of a recommendation for pediatricians but got the awareness out it got legislators talking about it. There are other cases of children and adults who have died. And they have been pictured online in many different ways. I am not going to judge those parents. You know, frankly, that takes us down a different road. I'm not sure how I feel about that. And it is certainly not for me to judge how those parents how those families react. However, that's not exactly what I'm talking about here. And I think we all know that I'm talking about the case of your child who's throwing up, run of the mill sick, you know, maybe has ketones that you're treating, who just looks awful. And you know, you grab the camera, because isn't that what we do? It's so interesting to me how much things have changed. I mean, when Benny was diagnosed in 2006, nobody had a camera because it wasn't on our phones. Right? It never occurred to us to take pictures of Benny in the hospital with Type One Diabetes, being diagnosed because who would bring a camera to something like that? And you know what, I wish I had those pictures. Only because there were so many funny and touching and wonderful and and sad moments that I remember, but I'd like to see I'd like to see little baby Benny ripping off all the stuff that was on him. We had such a hard time keeping anything on him. He's like little baby Hulk pulling off the sensors and things like that. I'd like to see him maybe getting his first shot. He was so brave. I'd like to see his face. Sister hugging him, you know all the things that are in my head, but that I don't have a photo of. And it's because times have changed so much that we don't think about photos. I have thousands of pictures on my phone, right? I don't even know what they're up anymore. We just take them in a screenshot and I save things and we don't even think about pictures anymore. But I'm telling you, these are pictures that we need to think about. I also think it's important to keep in mind and we all know this, but we don't really think about it when we're posting the internet is forever. And if you've posted a picture of your child in distress, child might be five years old, that photo will live forever. Your child will probably find that photo at some point in their life. So before you post another photo, just stop and think for one moment. I don't care if it's a closed Facebook group. I don't care if it's a private Facebook group. That's a bunch of bull. Nothing is private. In social media. The minute you hit post, somebody else can screenshot Somebody else can save it, somebody else can forward it, you have no idea where it's going, right? So just take a moment to think, why am I doing this? What do I need right now? If it's support and sympathy, I promise it's out there. If it's showing the real side of diabetes, I promise there's a way to show that without exploiting your child. And if the next time you post you're thinking, well, but think carefully, what comes after that. But what is stopping you? Is there a little bit of doubt in the back of your mind? If there is, you know, which other 10 minutes Think it over? You can't take it back once it's out there. I promise. There was love and support and sympathy and understanding and empathy and fundraising and awareness without posting these kinds of pictures. Agree? Disagree? I know a lot of people feel very strongly about this. And I know when this gets posted, most people aren't going to listen to all the way to the end, they will see the headline and they will tell me I'm a terrible person. So keep in mind, I am the world's worst diabetes mom. You know, what do you think I really would love to hear from you. All kidding aside, we will put this in the Facebook group. I'll be talking about it on social media when the episode airs. And of course, I'm Stacey at diabetes connections.com. You can find that a lot more about the show about the book. And about this episode on the website. Of course there is a transcription. all the episodes beginning this year, have that transcription on the episode home page. All right, back to our regular full length episodes every Tuesday, and then these minisodes on Thursday. I'm Stacey Simms. I will see you back here next week. And until then, be kind to yourself. Announcer: Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged. Transcribed by https://otter.ai
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DiabetesWise - A Consumer Reports for Diabetes Technology
01/28/2020
DiabetesWise - A Consumer Reports for Diabetes Technology
Choosing your diabetes technology can be complicated. Wouldn’t it be nice if there was sort of a Consumer Reports for pumps and CGMs? We found out about from people who know it’s about more than the hardware. Stacey talks with Dr. Korey Hood who lives with type 1 and is with Stanford University as well as Laurel Koester, with the Helmsley Charitable Trust. Together, these two groups created Diabetes Wise. Stacey, Korey & Laurel talk about how it works and why it’s needed. Stacey spoke to Korey on a previous episode about diabetes gear and mental health. In Tell Me Something Good – the greatest game of Marco Polo every played.. and Stacey finds her diabetes doppleganger. 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 (it's a rough transcript, please excuse grammar, spelling & punctuation) Stacey Simms 0:00 Diabetes Connections is brought to you by one drop treated 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 0:17 This is Diabetes Connections with Stacey Sims. Stacey Simms 0:23 This week, choosing your diabetes technology can be complicated. Wouldn't it be nice if there was sort of a Consumer Reports for pump and CGMs? Enter DiabetesWise from people who know it's about more than the hardware, Korey Hood 0:38 there's the physical side to wearing it, then there's this mental burden that is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is the distractions and the potential workaround. So you have to come up with in these various settings, whether it's school work, family relationships, Stacey Simms 0:56 that's Korey Hood, who lives with type one. He's part of the Team at Stanford who along with the healthy trust created DiabetesWise, we'll talk about what it is how it works and why it is needed. In Tell me something good, the greatest game of Marco Polo ever played, and I find my diabetes doppelganger. 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. So glad to have you along. And I'm really excited about what we're talking about today. Because I don't know about you. But when we went to pick out our pump for Benny, and I'll tell the story during the interview, it was just overwhelming. And while our educator was fantastic, I really wish we'd had just something to kind of compare and contrast the different types of tech like now exists with DiabetesWise. So we'll get to that and the interview in just a couple of minutes. But you know, I get so many great things emails and messages and I'm so terrible at reading reviews and sharing this stuff with you. You know, there's all sorts of techniques and strategies for getting people to share more reviews and email you more in blah blah blah. I'm just terrible at that. But I have to share this one with you. Because it was like getting a message, like a message in a bottle from a time machine. So here's what happened. Casey messaged me. “Hi, Stacey. I'm sure you get messages like this one all day every day, but I couldn't resist reaching out. I wanted to reach out and tell you how you impacted my world for the better. My son was diagnosed with type one on the 21st of November of 2019. We are soaking in all the new information, trying to get sleep keep up with our jobs, all while trying to keep our regular life intact. I came across your podcast and more specifically, the episode titled all about babies and toddlers with Type One Diabetes. I immediately thought finally a podcast discussing everything we have been dealing with lately. Plus, it's run by a type one mom – score! and Anyway, long story short, she writes, I listened to it and learned a lot.” “But that's not why I'm messaging you. I am messaging you because my son's name is Benny. And he was diagnosed just six weeks before his second birthday. His sister is four. If that wasn't enough similarities for you, we are also from Charlotte. They live in Charleston. Now, I know this might not mean that much to you. But for me listening to your podcast, shifted my world, listening to your story somehow made me feel not so alone. All I can say is thank you. Thank you for telling your story and putting your life out there for the world to see.” It took me a minute, I had to reread it to be honest with you. Because if you're not familiar with our story, my son, Benny, was diagnosed right before he turned two his older sister had just turned five. So it's a very similar story. I mean, they have used to live in Charlotte. It was just this feeling of kinship. Yep, I'm not sure I we're still talking. I'm kind of working out the emotions, because it is kind of like looking at a time machine. And I'm so grateful for the people that were there for us when Benny was diagnosed, and the blogs I read and the people that I talked to. So to be that for somebody else now is really remarkable. So Casey, thank you so much for reaching out. Definitely. Let's keep in touch, our Benny's. Maybe we'll meet at some point, how much fun would that be? I mean, we go to Charleston every summer. That's where we go to the beach. So I'm really hoping to follow up on this because man, those connections are really what it's all about. For me, it sounds really hokey, but if you've listened to the show for any length of time or met me, I think you'll say that that's the truth. Alright, so DiabetesWise coming up 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 slickest looking at most modern meter My family has ever used. It's not just about the 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. One Drop diabetes care delivered, learn more, go to diabetes, connections dot com and click on the One Drop logo. My guests this week are Korey hood PhD professor of pediatrics and of Psychiatry and Behavioral Sciences at the Stanford School of Medicine. We did a great episode a while back about the mental burden of wearing devices. With Korey It was really eye opening for me and I will link that up on the episode homepage. And we're also talking to Laura Kester T1D program officer at the Helmsley trust. I should note, we taped this interview a few weeks ago. So when they Talk about things added to the website. Some are already there. And starting this year, all of our episodes are transcribed on the homepage. Have you checked that out, you can go right to the episode homepage on diabetes, connections. com, scroll down just a little bit. And the whole episode transcript is there so you can read the episode, if you prefer. love to know if you're doing that. So let me know what you think. Here is my interview with Korey and Laurel. And I start out by asking Korey, what is DiabetesWise? Korey Hood 6:30 Well, thanks again, Stacey for having us on. And we're always happy to talk about diabetes life. So this is a website that we collaboratively worked on. So I'm a psychologist and clinical researcher and one of the things that we've noticed in practice and and also in research is that people are not always aware of the different device options they have and I'm not always aware of the different technologies available to them for managing Diabetes. And so we wanted to create a resource that was unattached to device manufacturers to companies that hopefully is unbiased and and can be free and people can go there and compare different devices and understand a little bit about what other people who are using those devices have, you know, thoughts on it. And so, we've been doing some collaborative work with the Helmsley Charitable Trust for four or five years on understanding some of these device and psychological factors related to device use. And so we have support from them and have been working on this for much of the past year and a half. Stacey Simms 7:45 Laurel, let me ask you, I remember years ago now, looking for the insulin pump for my son who was two at the time and it just seemed overwhelming what was out there. I had no idea how to make a decision. What would I find at DiabetesWise how would this have helped me? Laurel Koester 8:03 Sure. So one thing I think is really critical about DiabetesWise and makes what makes it so different from what's out there is the use of personal stories from real people living with diabetes. So, you know, our ultimate goal at the trust is to help people be aware of all their technology options that are out there, and kind of get the inside story and real talk from other living with type one about their experiences, trying, maybe stopping, maybe trying, again, different types of technology. And we found through some market research that we've done is people really you know, they're kind of two groups of people. There's a group of people that you really trust their doctor above everyone else. Then there's other folks that really look to online information sources. Know, like a DiabetesWise, like beyond type one. But there was nothing really focused specifically on technology. And what is really great about DiabetesWise is that it has a short questionnaire at the beginning that basically serves as an algorithm to help see where people are when they come into the site, and then provide suggestions on what device is right for them through the use of the personal story. Stacey Simms 9:40 And we're like, I definitely want to talk more about the homestay trust and why it got involved here. I mean, so much for people with diabetes, but Korey, okay, so you've and I've talked before about the mental load people with diabetes carry when we carry when one of these devices is attached. Right and how we kind of don't think about that. I mean, it never occurred. occurred to me when he was two and a half we put the Animas 2020 on him, it never occurred to me to think well, What's this doing mentally to my child? You know, as a teen, it's kind of easier to see. But can you talk about that a little bit about how it's beyond? I mean, they all work really well. There's not a bad insulin pump out there. Korey Hood 10:19 Yeah, absolutely. I think that, and what you just mentioned, I think is a great a great example of why we have to think about this at different stages. And, you know, for somebody who's, like your son diagnosed the two, and then the family is adjusting and I mean, the burden around the mental burden around diabetes management at that point, even devices are not as really on the parent and so the it's really just a physical side that's on the child, but as they develop and then you know, as you know, many of the people with diabetes using these devices are adults that there's a I think there's a couple different parts of Did that sit in the psychological impact and one of them that we noticed a lot, especially in the teen years, there is the social side. And so what kind of attention is drawn to the person based on wearing these devices and having alerts, alarms, having, you know, disruptions and various things that they're doing. And so I think that the there's the physical side to wearing it, then there's this mental burden that is, is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is, you know, the distractions and the potential workaround, so you have to come up with in in these various settings, whether it's school work, family relationships. And so I think that there's a, there's a lot to think about, that we often I think, especially in the clinical care side, we forget that as soon as people leave the clinic, this is what they deal with. Stacey Simms 11:56 Just this quiz, well this take me through which pumps beeps Am I going to actually listen to which CGM sensor alarm? Well I respond to I mean, I'm kind of joking. But you know, alarm fatigue and things like that. Are things that really happen. Are those kinds of things taken into account when you're trying to figure out what to choose? Korey Hood 12:17 Oh, absolutely. I think that you know, one of the things that we wanted to do, and I think that this is best illustrated with our CGM comparison tool, which we did a lot of collaborative work with Laurel and her team to make sure that we got it right. And one of the things that we have there, you know, people can compare the sensors compare the different devices on whether or not it provides, you know, you have to do calibrations, you have to do finger six, but you also know the kind of alerts whether they're customizable or not. Because, I mean, as you know, as you just stated in all the user testing that we did, that is a big concern for People are these alarms and alerts and and what are the ways that we can at least notify people of them and what it's going to be like that also, in our, in our stories, people talk about that. And they talk about it being disruptive at different times and some of the little tricks that they found to actually help those situations. And so we try to, you know, it's just, you know, essentially just real talk about what it's like to use these different devices. Stacey Simms 13:27 Also, Korey mentioned your team and some of the research that you did you had done. Can you talk about that a little bit? Laurel Koester 13:33 Yes, absolutely. So I think just want to take a step back is, you know, we know the technology works, but how do we get more people to be aware of them, and not only aware, but to then use them and found them. And so we know that there are a lot of different factors that kind of play into the space around technology adoption, you know, there's a lot of barriers, but also facilitators out there. And so we really wanted to hone in on, you know, we know their system level barriers, like insurance coverage. So our idea was, let's go directly to people living with diabetes and, you know, just understand their awareness around different technologies. And some of the market research we did was specific to CGM, but we thought, hey, if there are the system level barriers, and we also know that, you know, maybe not all providers actually know about these diabetes technology, you know, especially if you're talking about primary care providers. And, you know, given the number of people living with Type One Diabetes, but also type two in the number of endocrinologist in the US there’s just not enough to meet demand. There are a lot of people that are seeing in the primary care sphere. primary care providers just, you know, don't have the bandwidth. So some of the market research we did was to, you know, we wanted to learn about information sources that people trusted. And the the two main points that I alluded to earlier was, there was a group of people that really trust a variety of information sources, ranging from their doctor to diabetes bloggers, to online community groups, and then there's another group that overwhelmingly trust their doctor. So for us, this told us that we need different approaches to raising awareness about diabetes technologies, one being through patient facing resources, like diabetes lives, but I think part of our larger vision is to also we understand now from this research that we also need to involve healthcare provider. Ultimately, the truck vision is to increase the use of diabetes technologies for people living with diabetes and others who are on intensive insulin therapy because it really is a an effective tool to help improve management. Stacey Simms 16:22 Cory I'm curious as somebody who lives with type one, and I assume I shouldn't assume, but I was gonna say I assume who wears devices? Do you use a CGM or a pump? Korey Hood 16:33 I do. Okay, yeah. So you probably too many of them. Stacey Simms 16:36 Wait a minute. So tell us how many are you wearing at the moment? Korey Hood 16:40 Oh, no, I'm just, I'm just exaggerating. I've tried I think everything that's on there. Stacey Simms 16:45 That leads to my question, which is, do you mind sharing separate from DiabetesWise? How did you choose? And you can mention brand names if you want to, but I'm curious how you go about before there was a resources like resource like this. How you You went about choosing what devices you would at least try and then wound up with? Korey Hood 17:05 Yeah, I think it's a great question. And I think it's something that there's there's probably a few themes about how everybody arrives at this place about devices. And I'll tell you mine, but I think that it's there are not that many different routes to people getting on devices. And so for me, I mean, I it was fairly straightforward. This is when you know, back in, this was 10 years plus now when the first CGM came out on the market, and my insurance would pay for it, that was what made me kind of intrigued about it. You know, I heard a I was I've been working in the diabetes space, so I knew that it was coming and and so I wanted to try it because I could, but if I had to pay for that out of pocket, I probably wouldn't have paid for it. I probably wouldn't have done it at that time. So it was it was accessible to me, which was, you know, an important part. And then also, you know, I was I liked the idea of something that gave me a continuous, you know, feed of what was going on with my glucose because I knew from finger sticks and we still know most people are still using finger sticks that there's you miss a lot of the peaks and valleys with those kind of intermittent glucose readings and so for me that was appealing because then I could maybe catch a low I could. And so I just for the management purpose, I think that I was really drawn to it from the pump side. You know, I've been, you know, you've mentioned the Animas earlier and, and I that was my first pump and I use it for a long time and I still have it in my you know, diabetes Museum of devices at home. But I I, for that it was it was just because of provider said you should try this. I didn't know really a lot about it. You know, I was 1819 years ago and I thought you know, I'll try this and and so I think what I can tell you though now I currently use the Omnipod with the Dexcom g six within the loop system. And so my movement to the occupied was was just because it was working with that system and I was I wanted to give it a try to have to blitz and, and for me and my lifestyle and my you know, when I do physical activity, it's just so much better and so so they do have too long of an answer to your question, but I think it's evolved over time about why I've used devices and I've been drawn to ones more recently that are smaller that don't have to be in and that that make it a little bit easier to do the things I like to do you know, outside of work and family. Stacey Simms 19:59 Our...
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Minisode #4: Why We Went "Untethered"
01/23/2020
Minisode #4: Why We Went "Untethered"
Using a shot of long-acting insulin along with an insulin pump sounds like a weird idea. But Stacey found when her son's insulin needs went way up around age 11, that it worked incredibly well for them. She explains the method of untethered, which is also sometimes called POLI (Pumping On Long-Acting Insulin), what led them to believe it would work, and why you don't always need to use a ton of insulin to benefit from it. ------ ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription (rough transcript, please excuse any grammar, spelling, punctuation errors) Stacey Simms 0:00 This episode of available as a paperback eBook and audio book. Learn more at Announcer 0:21 this is diabetes connections with Stacey Simms. Stacey Simms 0:27 Welcome to an episode of diabetes connections. I'm your host, Stacey Simms, and this is one of the new episodes I've added for this year. Where in addition to the weekly interview shows that are longer. I have started doing these shorter mini episodes where it's just me talking about one topic, hope you're enjoying them. It's been really fun to get the reactions and hear what people want to hear more about. So if you're brand new, just real quick. My son was diagnosed right before he turned two back in 2006 he is now 15 and a freshman in high school taller than me, and recently got his permit to drive like North Carolina. And our young, young permitted drivers are graduated licensing. But that's not what we're talking about today. Just to give you context on how old he is, and you know where we've been, he was diagnosed 13 years ago. couple of episodes back. I mentioned Tresiba. I was actually talking about a Tell me something good segment on the show, which we do every week. Um, a family was sharing their last night of Lantus because their daughter was going out of pump, and Lantus really burns. So I was talking about Tresiba, which is another newer, long acting insulin as an alternative. And I had a couple of people asked me about that, one through email and a couple online. Don't you use Tresiba, they said, as an untethered method for Benny, and I thought this would be a really good chance to answer that question and talk a little bit more about what's called untethered or POLI. They both kind of mean the same thing. They're a little bit different, but we'll go through them. I will start out by saying, once again, I am not a medical professional. All of the information I'm giving you here is through my personal experience as a parent of a child with Type One Diabetes. I am not a healthcare provider, please call your endo or your care team to follow up and ask them any questions especially about a topic like this one. But this is the kind of topic I love sharing about because the only reason we tried untethered, which changed my son's life and has just been amazing. Over the last. It's been more than a year now. We started in September of 2018. So the only reason we started it is because another diabetes mom reached out and said, Hey, have you thought about trying this? So Cheryl, thank you very much. I'm just trying to pass along the information here. So what are we talking about? Well untethered means making use of an insulin pump. pump and taking long acting insulin at the same time, a lot of people use untethered to mean that they only use the pump for boluses. So in other words, all of the basal would be coming from the long acting shot. That's why another term has cropped up which is POLI pumping while on long acting insulin. And that is supposed to mean where you do something a little bit more flexible 50% of Basal from the pump 50% from the long acting, and all of the boluses from the insulin pump, and that's actually what we do, but I still call it untethered. So for the purposes of this podcast untethered is going to refer to any use of an insulin pump with long acting insulin, whether you're doing 20%, long acting 100%, long acting Basal, that sort of thing, just for conversational purposes. I think untethered is an easier way to go. I have been criticized online For calling it untethered, because I guess technically it's not correct, but you know me that has never stopped me before. Alright, so why would you use it? Right? What this is my question, why would you go through all of the bother that is an insulin pump, right? inserting the inset every three days wearing the pump itself, you know if you've got little kids wearing it in the pouch, or if you've got the Omnipod schlepping the PDM around, you know, why would you do all that and then add a shot of long acting? Well, in my case, I couldn't imagine it until Benny became a teenager because what happened was his insulin needs went up so quickly and went up to numbers I never thought we would see. I didn't know people could take that much insulin and be ok. And in our case, and this is a layperson opinion, but I stand by it. I think the insets get overloaded. You know when your basal rate is 40 50, 60 or more units a day. Those insets just They don't seem to be able to keep up. We had so many leaks. We had so many issues. And we tried everything. We rotated sites. We tried a longer needle. We tried every two days every one and a half days. But you know, I turned around the insulin would be like leaking down this kid's stomach. And we knew that it just wasn't working. Something wasn't going right. Plus, he has the Tandem tslim X2 which holds 300 units, we had switched from Animas which held 200. I mean, no pump holds exactly about that. It says it was always a little bit less because you have to prime it and blah, blah, blah, if you use a pump, you understand. But with that 300 units, he was still changing out his cartridge so much more often than before. And I knew that something had to give. And then Cheryl reached out online and said, Hey, I really think you might want to try this. It really might help. So we talked to our endo about it. He recommended Tresiba which was also what Cheryl had recommended which is a newer long acting. And I always laugh because when I talk about Tresiba, I feel like I'm talking about whiskey Right, it's smooth. There's no burn. It's steady. It just doesn't sound like you're talking about insulin. But all those things are true. And it just lasts longer in the body than Lantus or Levimr. And that works really well. For some people, it doesn't work as well. For others. Of course, your diabetes may vary as always. But what's nice about Tresiba is once you hit the steady state, once you've been taking it for three to five days, there's a little bit more flexibility in when you have to take it. In other words, if you take Lantus every day at seven o'clock at night, you really have to take it at seven o'clock at night. There's there's not a lot of wiggle room with it. But of course, it's always better to take it at the same time. But with Tresiba you can miss that dose. We have missed the dose by several hours. And it really has been okay. It just works a little differently in the body and I'll link up more information as to why it's a different makeup. It really does work differently in the body and it's been amazing for us. So we worked with our endo and CDE to figure out the dosing, because we had to change it gradually over time to get to I believe we started out with 30% basal from Tresiba 70% from the pump, and we gradually moved it up. And now he's 50-50. It really took about three months to find the right dosing because we were hitting moving target, right, we went from 30 to 40 to 50%. And we were changing things all the time. But we saw changes right away. I mean, it was incredible. Once those basal rates in the pump came down, it seemed to work so much more efficiently. I really do believe it was the insets, but even if your insetts are working great, and your basal rate is like 20 a day, you know, if it's different and you're not a teenager, why would you want to try this? Well, interestingly, the first people I ever heard of doing untethered, were adults. And the reason that they shared with me was, they just had a little bit of trouble, especially at first trusting the insulin pump. You know, think about it. If you've taking shots, your whole life with diabetes. And suddenly you're on an insulin pump. But you know, it's been 10 years or 20 years, it may be difficult to trust it, not just the technology, but you don't see the insulin going in, like you do with shots. So both adults said that they started with untethered, because it was kind of an emotional thing. They wanted to make sure that everything was working, they wanted to kind of ease into the pump. And then one person did that for a couple of months and one person stayed on it. And I have another friend who has really bad anxiety and she found herself worrying. Are my insets working? Do I have a bad cannula, is something's gonna go wrong while I'm sleeping. And her endocrinologist prescribed, untethered to help her with that anxiety and to help her feel better and to know that the insulin is indeed going in. And that's made a huge difference for her too. So there are a lot of reasons why you consider something like this. But I think the most important thing is to know what's out there to know that this is something that you can do. You don't have to do it forever. You don't have to do it at all. But if you want to try it out, you talk to your endo. And you can do it for a couple of weeks, couple of months. Keep it or not, if it doesn't work for you, nothing ventured, nothing gained. And if it works, it could work amazingly well. Benny hit puberty and oh my gosh, I'm sorry, I don't wanna get too personal on him. But I do want to share this. He hit it like a rocket ship. I mean, it just happened so quickly. It was and he was younger than most kids. And his insulin needs went way up, his numbers went way up, because we really didn't understand what was going on. You know, we were doing everything we felt we were supposed to be doing. I was helping him at the time. So I know it wasn't a question of not bolusing. But whatever we did, you know, once you get high, it's so hard to come back down and that was happening all the time. And in my head I'm thinking, you know, is he eating when I don't know about it, is he not taking insulin, you know what's going on, and it was the basal rates, they just needed to be increased. And once we added Tresiba, and took the load off those insets, his A1C, all his numbers, his time in range, everything went back to pre puberty, even though his insulin needs have gone up, and his teenage hormones are obviously still there. So he's 15. We just had an endo visit and things are finally beginning it looks like to come back down in terms of insulin use. So I don't know how long will stay on untethered and control IQ coming out is, you know, possibly going to change things for us. But he has said he wants to stay on untethered for at least a month into control IQ, and our endo and our CDE supports that and of course, I do too, so we shall see what happens. But if you're a parent of a teenager, and you're freaking out, because their numbers have started to get really high, and you think, oh, they sneaking food, are they not bolusing, but you know, that doesn't feel right. You just don't think that's really the case of what's happening with your kid and I don't want to talk about sneaking food that's those two words should not be used together. So let's just say eating food without bolusing. That's a different topic for another time for sure. But you You're not sure what's going on with your kid. Do not assume the worst is all I'm saying, do some basal testing, talk to your endo about basal needs. Because if like me, your kid was diagnosed at two. And the first basal rates you ever saw on a pump were 0.025 when they suddenly shoot above needing three full units every hour, it's easy to think this can't be happening. This isn't possible. But it is. And this is just one way to kind of help ease the pressure off the pump. If that's not working the way you and your endo think it should be. It's an alternative to think about that really, really helped us. It is no fun to take a shot every day. I give Benny so much credit. Although now he rolls his eyes at me. I can't even say like, I'm so proud of you. And he's like, Mom, you're so lame. But you know what I mean, right? It's not me taking the shot. It's not you if you're a parent. So we really have to get our kids on board with this. I'm not above incentives. Try this for a month. You know, here's 25 bucks for Amazon, or whatever works in your family. But I think it's important to at least ask these questions rather than live day in and day out wondering, what are we doing wrong? Feeling like a failure. teen years are tough enough. And I know, you know, using Tresiba isn't gonna solve everything. But I talked to so many parents who just don't realize how high the insulin needs can get. I mean, look, a basal rate of four units an hour. sounds crazy, but it's not that uncommon, using 80 to 100 units a day of basal insulin. It sounds bananas. But for some people, that's what they need. And people who don't have diabetes, their pancreas is are just pushing this insulin out as teens. You have no idea how much insulin your kids’ friends without diabetes is making them his body. They need what they need. So talk to your care team about it. Talk to your kid about it. And if nobody thinks it's a good idea, just remember, I am the world's worst diabetes mom. Oh, I will would be remiss before I go to not say, while I have sung the praises of Tresiba, like everything else in diabetes land, you're often at the mercy of your insurance company. We were very lucky to find that this was covered. But it is not always it is a much newer, long acting, so you may have to fight for it. definitely make sure your endo is willing to go to bat and help you appeal if need be. If this is something that you really feel strongly about, and they do, too. You don't have to use Tresiba as the long acting to go untethered, it's just what has worked for us, but unfortunately, it is so new that a lot of insurance companies do not cover it yet. Alright, we are doing these minisodes every Thursday, and every Tuesday, we have our regular length interview shows where I talked to newsmakers, athletes, artists, celebrities, authors, speakers, and everyday people just living with Type One Diabetes. Learn more at diabetes connections.com. You'll also find the episode homepage and links to a lot of what I spoke about here, including studies about untethered and a lot more information so head on over to the website, please be sure to join the Facebook group diabetes connections group. I'm Stacey Simms, and I'll see you back here next week. Until then, be kind to yourself. Benny 14:19 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
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Competing on Food Network Kids Baking Championship With T1D
01/20/2020
Competing on Food Network Kids Baking Championship With T1D
When 11 year old Elise Sammis applied for the Food Network's Kids Baking Championship, she didn’t think twice about telling them - right up front - that she lives with type 1 diabetes. She says she wanted everyone to know in order to show that diabetes wouldn't keep her from her love of baking, or anything else. Turns out, there's another young woman with type 1 on the show this season! Stacey met Elise & her mom, Natalie, at an event in South Carolina. They spoke about the show, the stress and her diagnosis two years ago at Disney world. In TMSG - good news at the dentist - and it wasn’t about cavities.. and we'll share a story of a lot of spirit at Walt Disney World Marathon weekend. 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 (rough transcription, please forgive grammar, spelling, punctuation) -----------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: This is diabetes connections with Stacey Simms. Stacey Simms 0:23 This week, when 11 year old Elise Sammis applied for the Food Network's kids Baking Championship. She didn't think twice about telling them right up front - she lives with Type 1 diabetes. Elise Sammis 0:36 No, that was very important to me, because I wanted like everyone to know that if you have diabetes, you can still do the things that you want to do. And it was super cool because there was another girl named Naima. She's my super good friend and she had also had type one, and she's super sweet. And we were both like, yay, we both have type one! Stacey Simms 0:52 That's right. There are two young women with T1D competing on this season of the show. I met Elise at an event recently, and I talked to her and her mom about the show the stress, enter diagnosis at Disney World in Tell me something good. Good news at the dentist and it's not about cavities and a lot of spirit at Walt Disney World marathon weekend. 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 you're here. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host Stacey Simms. My son was diagnosed 13 years ago right before he turned two. The show this week is airing a little earlier than usual. Yeah, we almost always drop the interview show the longer show of the week on Tuesday. But because the Kids Baking Championship is on the Food Network on Monday nights. I thought it would just be fun to release the show with Elise on the day of her show. I love the baking shows, and we used to watch them. I feel like it was around the clock for a couple of years my daughter got into them right around the same age as Elise between the ages of like nine and 12. We've watched so many of these baking shows, we made cupcakes, we didn't ever compete. My daughter never wanted to be on TV like that. But it was great. And we certainly got a lot of comments about the cupcakes because I would post them on social media and I'll put some pictures up in the Facebook group because these were, you know, really big. I mean, they weren't beautiful, but they were sharks and cupcakes that look like popcorn and you know, all the dramatic fun stuff. And people would say all the time. Oh, it's too bad that your daughter has that hobby. What are you doing about your son? And I'm like, I'm not letting him eat 17 cupcakes, but I'm not letting her eat 17 cupcakes either. You know, it's fine with Type 1 diabetes, you just have to know exactly what you're eating. Right? It does take extra work. But now go ahead eat the cupcake. And with those memories right in the back of my mind, it was even more fun to talk to Elise and to Natalie It is always a bit dicey talking to reality show contestants. You know, we've done this before, and it is always fun. But it's not just about what they can't say because here obviously they can't talk about the show, even though it's taped weeks and weeks months ago, but because you never know they could win the whole thing. They could be off the show before this episode even airs. But I'm so thrilled that Elise is is one of two girls on the show with Type 1 diabetes and it was great to talk to her and her mom and no matter what happens on the show, she is well on her way quite a personality and really just a fun kid. All right, first Diabetes Connections is brought to you by One Drop and getting diabetes supplies is a pain and 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 trip 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 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 dot com and click on the One Drop logo. My guests this week are Elisa Sammis and her mother Natalie. Elise is a contestant on this season's Food Network kids baking show. She was diagnosed with type one at age nine and we talked about her diagnosis. But she was already baking a lot by then. And luckily her family realized you can continue to bake and enjoy dessert even with Type 1 diabetes. Being on a big show like this is a great chance to educate and what's really fun is as we mentioned, Elise isn't doing it alone. There's another young woman on the show Naima Winston from Baltimore is her name and I will put some links and information on our episode homepage, where there is also a transcript about Elise about Naima about the show and more information. So please check that out. That's a diabetes dash connections.com. And while you're there, please note every episode from the last four years is there you may be intimidated to scroll through I get asked all the time, what's the best order? I actually think the best way to listen is either to use the search box and put in whatever interests you Disney, Dexcom, Tandem, Omnipod, right or you can search by category as well. If you click on the tab that says all episodes, you'll see another search box to the right and then filter by category. And that is a really great way to dial into what you want the categories including advocates, athletes, artists, actors, education, technology, travel, family, you know, there's a whole bunch of ways to narrow this down because we've got more than 270 episodes now Holy cow. And I really urge you to go take a stroll through and see what interests you. Quick note, this interview was done on the road, I was speaking at the JDRF chapter, the Palmetto chapter in South Carolina. So the sound quality is a little bit different than when I'm doing things in the studio. And I may be a little soft at times. I'll tell you about the technical nonsense that happened. I'll tell you about that at the end of the show. So let's get to it. Here is my interview with Elise and Natalie Sammis. Let me start with you, Natalie. How did you guys even find out about this? How do you get your kids on a show like this? Elise Sammis 6:38 Well, actually, I didn't get my kid on the show. Elise put herself on the show. Basically, we live in the south and hurricanes are prevalent. And about a year and a half ago, at least you think it was Hurricane Matthew and we got five days off of school. And so I was very bored around the house. So I looked up, like, because I like to bake and I was getting into it. So I looked up like baking competitions and I saw like form so that we could, like fill out a form so that we could try out. And so I made a video for it and I sent it into them. And after that we didn't hear until like six months later. Stacey Simms 7:23 So during that five days and your home and baking was that your first foray? Was that your first time into baking or is it something you'd always like to do? Elise Sammis 7:30 I'd pretty much always like to bake from like, I guess like when I got diagnosed with Type 1 diabetes when I was nine, it was really stressful. So it was just really like stress relieving to be able to bake and it was like creative. Stacey Simms 7:46 Alright, so we have an audience that knows about diabetes. But what you just said when I was diagnosed with type one I found it really stress relieving – that could sound strange. What were your thoughts as she was enjoying this as a younger kid? Natalie Sammis 8:06 The two background stories, I think that are important in this piece are that a I am an avid Baker. And so literally, sugar is in my blood at all times. No, I my motto is dinner is always just a means to dessert. That is my life motto since a small child. And also number two, I'm actually an RN, I have my Bachelor's of Science and nursing. So I understand the principles. I understand that Yeah, you skirt the line a little bit closer. When it comes to desserts. It is a little bit more complicated in your carb counting. But it's also it's very doable. It's not off the table. It's not something that someone should be terrified of. It's something that you can balance and put into your life. And also we realized that half the time that we bake, we don't even eat it really we are sharing it with our friends or we're posting it like on social media to feel unify with other people. People It is really, truly a creative outlet for us probably like how people feel with art, but I don't get art and I cannot eat art. So we just go with the dessert side of the world and we like it and we make friends by giving people desserts. Stacey Simms 9:15 How old were you when you were diagnosed? Elise Sammis 9:17 It was the day after my ninth birthday, and we were in Disney. And there was my birthday and my mom actually fed me a chocolate chip cookie for breakfast. Right there. So we were like noticing a lot of symptoms. I was really thirsty all the time. So then my mom took me to the urgent care clinic, the CBS for CBS. And like the MinuteClinic the MinuteClinic Yep, yep. And I got and she got a glucose meter and she thought as a UTI at first. Natalie Sammis 9:52 Right. So she took a blood sugar first and it just read error. When the very first meter read error. The nurse in me problem solving. I thought, ooh, there's something wrong with the machinery that that Wait a second, I know how to litmus test this. So I stuck my own finger, I tested my own blood sugar and it said 96 I still remember the number and my heart sunk. I knew at that moment, deep down that she had diabetes, but I didn't even then didn't want to admit it. Because, you know, that's the worst. So we went to the urgent care and the urgent care. I still remember they looked at us like we were crazy because we walked in. And Elise is holding a Diary of a Wimpy Kid book. And she's just flipping through and reading it and she has a bottle of water in one hand, because at that point, I said, You drink as much as you can. Right? Right, right. Just drink this. And I said, I think my daughter might have diabetes. They look at me, like, does she fall down? Did she pass out? Like I'm like, No, but she's drinking me. Are you from the area? No, we're on vacation at Disney. And they're like, so you stopped your Disney vacation and you think she has diabetes? I'm like, I know. I basically said tell me I'm crazy. I want to walk out of here laughing like I'm just a paranoid Mom, I just cannot in good faith just go back home after seeing the error recording and having those symptoms and I just need to know so we waited quite a while because we were not on the urgent list at that point. And even the doctor said, I think it's probably just a UTI. But he respected my wish to check your blood sugar. And at that moment, their meter read error Hi. And they said he pulled out his personal cell phone and said go directly to Orlando Children's Hospital. Stacey Simms 11:31 Do you remember any of that? I mean, nine is old enough, but sometimes things get confusing. Do you remember like, anything that your mom was saying? Or what's going on in the hospital? Elise Sammis 11:39 Well, I remember that like when I got in there. I was asking like, Is it ever going to go away and everything then I remember the turkey bacon was disgusting Natalie Sammis 11:49 They put her on this restricted carb diet. So all she could eat with like a massive amounts of turkey bacon, Elise Sammis 11:57 turkey bacon. like sugar free jello. Stacey Simms 12:03 So did you ever get back to Disney World? Natalie Sammis 12:05 Yeah, we did we After that we went to Hollywood Studios. We took it that Disney paid for us for a taxi or an Uber. I can't remember which one back to our place that we were staying in the other. My Elise is the oldest of four children. So the other kids and my husband were already at the party because we said go on without us because we had been in the hospital for about three and a half days. And we got in that taxi cab we threw our suitcases in there and we saw the next bus to Disney and we ran our little hearts out and barely caught the bus and we didn't get to do too much that day. And then we went home the next day but Disney was kind enough to give us passes to come back and when we had kind of our life under control a little bit more and we understood more about diabetes in real life. We came back probably three months later in May Elise Sammis 12:52 is a lot better experience than the last. It was a lot more fun. Okay, Stacey Simms 12:57 so after Disney World when you go home You say you figured out diabetes in a bad life? You were already enjoying baking at that point. After all that turkey bacon. Were you worried? Like that's it for baking or cupcakes? Or did your mom kind of jumped right back into it with you? Elise Sammis 13:14 Well, for about a week later, I was like, I don't even know like what I can or can't eat. And so we like kind of researched a lot. And then I was like, wait, I don't have to just not eat sugar. I can just take insulin for it. So then I was like, Well, I can still bake and stuff. And so that's I was like, yeah, you know, it's got really excited about it. Stacey Simms 13:39 That's great. So what a whirlwind diagnosis and hopefully we'll have time I want to talk a little bit more about Disney World later, but let's talk about the bacon. You send in the video. You wait six months later, what do you hear what happens? Elise Sammis 13:53 So like, I've been waiting and then another season came out, and that was like, they just didn't see it. The following, never gonna happen. And then like, six months later after that, I was on the bus and my mom called me She's like, you're not gonna believe who just called me. And I was like Harry Potter. Stacey Simms 14:14 well, she was almost 11. Elise Sammis 14:18 And then she's like, no, it's the kids baking championship people and they want to interview and I was like, Oh my gosh, yeah. So I ran home. We did a lot of Skype interviews, and I had a lot of assignments and I had to make a ton of desserts. And there's a lot of other videos I had to make for it. And there's a lot of interviews as the mom you know, please seeking I mean, this is an exciting time but at the same time it's a lot of hopes for a young woman to have Yeah, yeah. Nervous that after all of this work, she wasn't gonna get on the show. Oh, very, very guarded, I guess will be the word. Natalie Sammis 14:53 I mean, I'll backtracking when she said mom can I turn in the video and I did have to click like I agree and I help fill in. Some of the, like contact information so it was correct, because at that point, you were 10 years old when she turned in the video. And I told I still remember and people laugh at me still, at least still less than me. My caveat was sure I'll turn in this video but you need to understand that you will never hear back from them, they probably will never see it and you're never going to be on that show. And if you're okay with all those three sentences, I'm feeling okay with letting you turn this in. Because I'm more of a realist. I am Elise is a is a goal setter and a go getter and a dreamer. And she proved me wrong every time so I don't know why I keep doubting it. But I just I think I do that out of protection as a mom and so yeah, as time went on, you couldn't even the process is when they Skype, the parent in the room is not allowed to be in the room. You can't be there. They want the kids to stand on their own. They don't want some mom in the corner given them most of coaching and so I would put my ears to like the door but I have a he was four at the time. And he would be like read to me we've got this new dog that was like two months old and an idiot, so I'm literally like hearing every fifth word. And even then I'm like, oh, like so excited out of my mind that I couldn't even concentrate. So I mean, it was crazy. Just week after week, it went on for from March until June, just on and off on enough like, yes, you made it to the next step. Then we would hear crickets, crickets crickets, and you don't want to be the annoying mom. And then they not pick you because you're this weirdo psycho. So you had to play it cool. You have to kind of just wait for them. And then the next kind of like little piece of cheese would come and he would chase after that. Stacey Simms 16:34 so then this is going on for a while. When did you really start to get close? What happens? I don't know how much you can share. So don't tell us what you can't. But how do you know that? This is going to be it? Elise Sammis 16:44 Yeah. Well, we were doing all these interviews and videos and I was it just kept going. And I was like, when are they going to cut to the chase and like, actually do it. And so then we got a call in like early June. They're like, we want to fly out 15 kids, we're gonna send three home and all the other ones are going to be able to be on the show. And I was like, we're finally going to LA. Natalie Sammis 17:09 Yeah. So we knew flying out there all the way to all this work. I mean, this is now we've been up till 2am, baking things having to print that present the next day unless it's work. I mean, huge amount of work. And it's a risk. It's Stacey Simms 17:24 already going home. And then the competition, you know, Natalie Sammis 17:27 oh, yeah. So our goal was to get on the show, and knock it out the first episode. And we didn't do those things so that we can just hang our head forever. Stacey Simms 17:36 What happens when you're there? I mean, you know, kids are generally pretty friendly, I would think. I mean, you want to be friends, you're hanging out. There's got to be a lot of downtime. If you're not familiar with TV production, there's so much downtime, is it hard doing that knowing that they're not going to stay? Elise Sammis 17:52 It was super hard because like, the first day like all of them were super nice, and they're all like super friendly, and like we went to the mall, and we hung out at the pool together. And like, I didn't want any of them to go. But they had to, there was no thing in me that was like, I want so and so to get out. Yeah. Stacey Simms 18:13 So yeah, be nice if everybody could win. But that's not how the show works. Yeah. All right, what can you...
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Minisode #3: What I Want From Tandem's Control IQ
01/16/2020
Minisode #3: What I Want From Tandem's Control IQ
As we all wait for the release of the newest hybrid closed loop software, Stacey has some thoughts about what she hopes it'll bring to her family's experience. Transcription below! ----- 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 One Diabetes,” available now as a paperback eBook and audiobook, Learn more at Diabetes dash connections.com Welcome to one of the minisodes of diabetes connections. I'm your host, Stacey Simms. And I started these shorter episodes this year, just so I could talk a little bit about stuff that interests me. We still have our weekly episodes every week that are longer and more interview based. But these are just little bits of topics one at a time, where I want to kind of share what's on my mind and then hear back from you whether it's in the Facebook group or elsewhere on social media. If you are new, we have a terrific Facebook group. It's diabetes connections, the group, please reach out and join and you can always reach out via email. or other social media I am Stacey at diabetes dash connections calm. And today I want to talk to you about some thoughts on Control IQ, the new hybrid closed loop system from Tandem. The emails for Control IQ were set to go out this week. So I'm sure there was a lot of online chatter and you know, scrambling for this and did you get your email and that kind of stuff? Did you get your prescription? And do you have it yet? And have you downloaded it? And I thought it would be fun to just take a moment before you know we start sharing our thoughts about Control IQ and trying it you know, just for the record, kind of to get this down. What are my hopes, what are your hopes for Control IQ and really for a lot of these hybrid closed loop systems and before I get into that, for the Hybrid closed loop systems systems. I think that your perspective on this has to depend on when you entered the diabetes community. I know we have people listening who have been diagnosed for years and years, you know, 50 plus years, 60 plus years. And their perspective is going to be very different than someone whose child perhaps was diagnosed six months ago. So just as a reminder, my perspective is that of a parent whose child was diagnosed 13 years ago, at 23 months, who went seven years with no CGM, because frankly, we didn't we didn't really feel like it was accurate enough to put a second sight on my kid's body. And by age nine, it really became his choice. And then when he chose to do it, I don't think he's taken it off for more than two days. You know, Maybe a beach trip here and there. But we really are huge fans of CGM. And he's had a pump since he was two and a half. So that's my perspective. Look, I know this is not going to be perfect, right? I mean, all this technology has issues. But what I really hope but I am hoping for is not, you know, perfect numbers, right? I don't think Benny's A1C is going to suddenly go down to 5.8. And that's not my goal. What I'm really hoping from Control IQ. What I'm really hoping we get from Control IQ is less stress, less of a mental burden on both of us, and more freedom for Benny. And let me just talk a little bit about that. Because I if you know me, and you listen to the show, we give him a lot of freedom. But a perfect example is he was at a wrestling tournament. I mean, he's just off crutches recently, but the kid hasn't missed a practice or a meet. He just really likes to go and be part of the team and they put him to work. He's been Great, but he went to a trip where he was catching the bus at school at 6am. They took the kids, this was a Saturday, they took the kids about 45 minutes away. He didn't get home until eight o'clock that night. They feed them on the road. It's a lot of potluck. It's a little bit of fast food, but it's really nice. A lot of parents get together and make homemade stuff. And I pack lunches for Benny too, just because he likes to eat certain things. It's not about diabetes really. and then you know, I try not to hover and check in all day. Obviously, I can see his blood sugar on the Dexcom and he's responsible for remembering and taking care of himself. And on a lot of these days, and this is this happens really just about every weekend during wrestling season, and usually once during the week they have a match after school to what generally has been happening is he's bolusing after, because he's not sure exactly what he's going to eat, or he forgets, right, and that he's kind of correcting a little bit late. So we haven't had any really crazy highs. I mean, there's one inset issue we had, but he's been kind of floating up to like 210 to 215. And then I'm debating when do I text him because we do have an agreement, we, you know, that is well within my rights to text him, but at the same time, you know, I want to leave him alone. I don't want I don't want to burden him. So it's been a little bit of a struggle and I'm really hoping for his Control IQ evens those numbers out, right, I don't really expect it to take care of you know, if he forgets to bolus and spikes up to 400, which happens every once in a while and he come on, I don't expect it to fix that. But if he's bolusing as he's eating or a little bit after, or he miscalculates carbs, right? I'm really hoping it helps with that. I'm hoping it helps with the excitement spikes and some of the adrenaline spikes from athletics. I don't know what it'll do with that. I'm optimistic but You know, we'll have to see, What I hear about all the time from people who have done the DIY loops is that they, they don't necessarily have, quote, better control or more in range numbers, because a lot of people who do DIY frankly, I mean, they had really low A1Cs to begin with many of them. I know as you're listening, you're saying not me, okay, I'm just making a generalization stay with me. The point is that they may not see a huge difference in A1C or time in range, but they are seeing better sleep, they are seeing less work, right, more freedom. For Benny, with Control IQ and for everybody with Control IQ, I hope it means less work and less upstairs less mental burden. And for people who do have higher A1Cs, who maybe are newer to pumping or newer to CGM or maybe this is an opportunity for better education. I really hope that those people do see better health and do see better outcomes and do see better outcomes. I mean, as you listen to this podcast, again, making a generalization Here you are, you know, the top educated people in the diabetes community, not necessarily because of this podcast, but we've done the research. People who listen to this show are extremely well educated, you're seeking out more information, you're in the Facebook groups, you're reading stuff, right, you kind of know what's going on. And if you tuned in to learn about Control IQ, just the fact that you know what it is called, and what it is, means you're better educated than probably, I'm going to throw out a number that I'm making up 80% of people in the diabetes community, community, and those are the folks that if they have access to this technology, which is a whole other thing, story altogether, the cost the access, oh my goodness, the costs the access. I mean, I we must acknowledge that. But if they can get this, those people are going to see huge decreases I think in A1Cs and that's really exciting stuff. Is this a solution? a cure? Of course not. And as I just touched on there, we have bigger issues, the cost of insulin, access to insulin access to this technology, education, education for endocrinologists access to endocrinologists for mostly for adults with type one diabetes, right? I mean, there's so much going on here. I didn't mean to get off on a tangent, but my expectation for Control IQ is not that we're going to see miracles. We already sleep through the night pretty well. But I'm hoping that he can continue to have the independence that I give him with more time and range with less nagging from me, you know, gosh, in the back of my mind, I'm really thinking about camp later this year. If you're not familiar, Benny goes away to non-diabetes, regular sleepaway camp for a month every year. And he does really well. That's a topic for another time, I probably will do a minisode on camp. But you know, he does run higher for that month. Some of that is our thinking is about safety. But most of that is about he's a kid who's basically responsible. He's a kid. He's basically responsible for his care 24 seven at this camp, and he will often bolus late or forget a correction bolus. I can't wait to see what Control IQ does for him at camp. It's gonna be really exciting. All right. I know a bunch of you listening are thinking I'm not going to go with Control IQ. I've heard from many people who already see they're going to wait and let it roll out. And then when all the bugs are done, they're going to go ahead and take the plunge themselves. We plan to get it the minute it is available to us. Our endocrinologist, we just saw him at the very beginning of January. He said the prescriptions are in we are all set. So it's possible by the time you hear this, that we already have it and we're using it in Benny's pump, although I doubt it will it will see and I'll post in the Facebook group and I will give a review of course as soon as we possibly can. But man, I'm thrilled to think about this. And if you use another type of insulin pump and you're still listening, you know of course insulin has its own system coming out. Medtronic has a new pump coming out there are more CGM is coming to market. There's gonna be a lot more to talk about, of course when it comes to hybrid closed loops, but we've been waiting for this for a long time, you know, Those loops. But we've been waiting for this for a long time, and I'm so excited to see what it does for Benny. And you know, Benny would probably be the first to tell you that I am the world's worst diabetes mom. If you'd like to learn more about the book or about me, you can head on over to diabetes dash connections dot com and be sure if you're new especially to check out our extensive archive of shows. You can search by keyword or by subject. We will be back next week with our regular interview longer episodes and those drop on Tuesdays. Beginning This month we have added transcriptions for every episode, and you can see those over at the homepage, just click on the individual episode homepage and scroll down and you will see the text of the episode. A lot of people have been asking for that I'm really excited to provide it to provide it. Thank you so much for listening. I'm Stacey Simms. I'll see you back here on Tuesday. Until then, be kind to yourself. Transcribed by https://otter.ai
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All About Babies and Toddlers with Type 1 Diabetes
01/14/2020
All About Babies and Toddlers with Type 1 Diabetes
We're talking about the youngest people with type one diabetes: babies and toddlers. When you can't talk and you're barely eating solid food, the challenges of T1D rise to a new level. Stacey's guest is Pediatric Endocrinologist Henry Rodriguez, the clinical director of the University of South Florida Diabetes Center. The interview features everything from breast feeding, diluted insulin, pump and CGM use in babies and much more. Resources: Facebook groups: In Tell me something good. The other end of the spectrum: celebrating a long life with type 1 - 64 years since diagnosis and going strong. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Rough episode transcription (please forgive grammar, spelling & punctuation) Stacey Simms 0:01 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. This week, we're talking about the youngest people with type one diabetes babies and toddlers. At that age, everything – food, sleep, communication has unique challenges, including what happens when you dose and they won't eat. Pediatric Endocrinologist Henry Rodriguez is the clinical director of the University of South Florida Diabetes Center. He's actually referring to the older insulins there, NPH and regular not commonly used anymore, but that situation certainly still happens. And we talked about everything from diluted insulin, breastfeeding and CGM use In Tell me something good. The other end of the spectrum celebrating a long life with type 164 years since diagnosis and going strong. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Announcer: You’re listening to Diabetes Connections with Stacey Simms. Stacey Simms 1:42 Welcome to another week of the show. I'm your host Stacey Simms. So glad to have you along. And a special welcome to new listeners from the Greater Western Carolinas Dhapter of JDRF. I attended that summit over the weekend. So hello to anybody who found out about us there and is tuning in for the first time. And hello to all the moms and dads of little ones. You know, this is an episode focusing on babies and toddlers with type one that I've actually been trying to do for a very long time. It is hard to find an endocrinologist who really wants to come on and talk about this. I don't know why, but it's taken a while. So I'm so happy that Dr. Rodriguez decided to spend some time with us. Now as you know, if you're a longtime listener, the subject of babies and toddlers with type one is very near and dear to me. My son was diagnosed right before he turned two. So I want to tell you right now, this is a longer episode. But please stay with it. I mean, come and go. as you please, we will be here waiting for you. You can certainly pause and come back. It's a longer interview. But I wanted to really take advantage of having a person who could talk about this stuff and the interview transcription is available at the episode homepage, go to diabetes dash connections. com, click on this episode, and you will see the transcription just a little bit down the screen there. That's new for 2020 for the show. I know we're well into to January at this point, but my house is finally a little bit back to how normal is now I guess because my daughter just went back to college. She's been home for about a month which was fabulous, but she was definitely ready to go back to school and I don't know what I'm going to see her again and maybe just until spring break. Oh my goodness. And of course Benny is at regular high school so he's been back for a while now too. Very happy to have a new sponsor this year! Diabetes Connections is now 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 just makes sense. Their CEO Jeff was diagnosed with type one as an Dult and 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 dash connections calm and click on the One Drop logo. My guest this week is Dr. Henry Rodriguez, a pediatric endo and the clinical director of the University of South Florida Diabetes Center. As Dr. Rodriguez confirms, as you'll hear, more younger people are being diagnosed with type one, a trend that seems to have started about 15 to 20 years ago, but there's not a lot of easily accessible information to help parents in this age group. I will link up some information in the show notes on the episode homepage, including a couple of Facebook groups I do recommend for parents of very young children. But when Benny was diagnosed, we really didn't know anybody with a child that young. And I felt like we were making up a lot of it as we went along. Now the good news there is that he's fine, although I certainly made a lot of mistakes. But when you're talking about babies and you real six months old, one year old, it's a totally different ballgame. So if you are new to the show, I just want to warn you. I think I talked more in this interview than I usually do. definitely get on my soapbox a few times, and you'll hear me pushing my opinions and pushing some of them on to Dr. Roger. Yes. And he pushes back a couple of times, which is great. I feel very strongly about this age group. I mean, this is my wheelhouse, but of course, I am not a doctor. So here is my interview with Dr. Henry Rodriguez. Stacey Simms 0:02 Dr. Rodriguez, thank you so much for talking to me. I'll be honest, this is an issue I've been trying to cover for a long time. And I'm thrilled that we're finally getting to talk about it. So thanks for coming on. Dr. Henry Rodriguez 0:14 Oh, it's a pleasure. Stacey Simms 0:15 I'm not even sure where to start. I mean, between my personal experience, and then talking to so many moms of babies and toddlers, let me maybe back up and ask you, as a pediatric endocrinologist when somebody comes into your office or you meet them at the hospital, and they have a child under the age of two, where do you go? What do you tell them? How do you start? Dr. Henry Rodriguez 0:39 Well, I think, you know, we certainly start with the basics in terms of, you know, we feel the etiology of Type One Diabetes is how we think, you know, develops. I think what we end up doing these conditions many times is, is you know, first addressing you know, I think, whatever challenges diagnosed with Type One Diabetes, even though we fully appreciate it providers that are treatable. You know, there's that sense of loss and morning. So I think acknowledging that, and then we try to really focus on, you know, the fact that, that it is a treatable condition. It is challenging, there is no question that life is going to be different as folks at home, but but it's it's manageable. And, you know, in our center, we have the luxury of a multidisciplinary team. And we're all about supporting that family, you know, is is the case, I think we fully realized that. I think there are two times of life, at least in the pediatric age group, that are particularly challenging. It's in the very young children. And then it's the children they get diagnosed around the time of adolescence. And so for the very young child, the bottom line is that I think it is extremely important that we tailor the therapy to the patient. It's true across the board, but I think particularly with the youngest ones, Stacey Simms 2:00 When you're talking about the youngest ones, I think as we go through this interview, we will kind of section it because obviously, there's a difference between a six month old and a 16 month old, you know, and a three year old. But my personal experience was was interesting. So when my son was diagnosed, our pediatrician he was he was not yet to it was about five to six weeks before he turned two. She said, Bring him in. It sounds like type one diabetes, but he's too young. I've never had a case of someone under the age of two. So bring him in. And let's roll it out. And luckily, you know, we did we brought him in. I mean, unluckily, we rolled it in, obviously. But is that something that was either common at that time, which is 13 years ago? Does it still happen that people think you can't possibly have type one if you're under a certain age? Dr. Henry Rodriguez 2:44 No, no, I think you know, what we encounter typically is at the other end of the spectrum, it's, it's adults that come in and the assumption is, well, you're an adult, you obviously have type two diabetes, you couldn't possibly have type one. But I will tell you that You know, and we we actually I oversee both adult and pediatric providers at our center. And, you know, historically, pediatric endocrinologist, pediatricians will assume it's type one until proven otherwise. And on the adult side, it's the opposite. So, you know, I think we are in in less danger of mismanaging, so to speak a young child because, you know, our, our kind of default is to treat those children with insulin and then, you know, figure out the rest afterwards. elevated blood sugars, you know, can can occur transiently in a child who's Ill know in the midst of stress of illness and we can kind of say, well, Mom, okay, well, let's just see how how things don't obviously if you have a child that has an extremely high blood sugar that has, you know, positive ketones, possibly acidosis well, then then, you know, you know it's insulin deficiency and So you proceed in that regard. But you know, for a child that comes in with, let's say RSV pneumonia and you get a few older blood sugars will let that slide, so to speak. But, but for sustained high blood sugars, you know, we always resort to insulin therapy. Stacey Simms 4:17 Okay, so it was just maybe my pediatricians personal experience hadn't borne that out. It wasn't some something common. And before I move on from that, is it. I had heard anecdotally, again, that there are more cases of younger children with type one in the past 10 to 15 years than there were, say 30 or 40 years ago. It's true. Dr. Henry Rodriguez 4:38 Yeah. Yes, it is true. Unfortunately, we know that overall, the incidence of Type One Diabetes is increasing. And that increase is really most affected children less than five years of age. I should mention before we move on, you know, and we will come into the youngest individuals as you said, but for children less than six months of age, one thing that always factors into the equation, particularly if there's any kind of, you know, multiple family members that are affected by quote type one diabetes, we also have to think about monogenic diabetes. So those are individuals who have a genetic mutation that has affected the machinery as it were, that's necessary to monitor the blood glucose to you know, make the insulin, store the insulin, release the insulin, all those things. Now, it's far less common. But we have to think about those things in the youngest individual. Stacey Simms 5:42 And I will say will, as you listen, we will link up information about monitor genetics, diabetes in the show notes, you'll can find it on the website, and I'm actually doing a show in just a couple of weeks with a family that thought the child had type one thought the parent had type one, but it turned out it was monitored now. So we'll be talking more about that in a future episode but more information because as we're talking about the youngest kids here, that is something you absolutely have to keep in mind. Alright, so let's talk practical, because most of the questions that I have taken from other parents, and then I had myself I remember when my son was diagnosed, we're about precision of dosing. I mean, it's so hard, right? I mean, when baby was diagnosed, he was he was a bigger kid, luckily, so we were not using diluted insulin, which I'll ask about, but we were drawing up quarter units, which are not measurable. They don't make up you know, there's no lines for quarter units. At least there weren't a syringe. There wasn't even a half unit pen at that time. How do you advise people to do these itty bitty teeny weeny doses for kids? Dr. Henry Rodriguez 6:49 Honestly, I am so mentioned we were get to it, but I'm not a great fan of diluted in so I think you can do that. I perhaps you could accuse me of a bit of paranoia, but I'm always concerned that they're there, either, you know, less likely on the part of the period but, you know, another caretakers so forth an error at that level of the pharmacy. I'm always concerned when when you dilute insulin, think about it. Stacey Simms 7:16 I'm sorry, I cut you off. I got excited. Yeah, I mean, Dr. Henry Rodriguez 7:18 it, you know, if you're diluting the insulin tenfold and for some reason, you you make an error and you develop those, you deliver the full strength insulin. That's 10 times the dose you had intended giving. So that that is as I said, there may be a little paranoia on my part. I tried to get away from that. I, I will tell you, as you mentioned that, you know, even with the syringes, there are now insulin syringes that half half unit increments. And when you say you're going to measure a quarter unit, you have to understand that you're getting between zero and you're not giving the unit units Stacey Simms 7:55 was not my husband's quarter unit. We knew that we were just trying to Bad tech. Dr. Henry Rodriguez 8:01 But I think that's where I generally move towards, in fairly rapid progression. Move towards insulin pump therapy. Stacey Simms 8:12 Okay, wait, but before we do, because there jumped you jumped? Right? Let's Let's continue that because I do think it's worth talking about we never used it. I didn't even know it was an option at that time. But when I see people talk about it, they seem very enthusiastic about it before we go any further and I'm happy to, as you said, on the one hand is the paranoia on the other end of the parents who do think it works well. But let's start with the facts. What is it? I mean, you're not diluting insulin at home, are you a pharmacy? Oh, my goodness. Dr. Henry Rodriguez 8:39 So you can go Yeah, you can go one of two ways. I mean, the manufacturers do. Provide them you can purchase a diluent it's essentially the solution that insulin is prepared in and you you can dilute that insolent. Some folks do that for is, again you can you can segue to off of the pump their baby deal with the pump as well. But, you know, you dilute the insulin and it's it's something that my preference if you're going to go that route is to get a reliable pharmacist to do that for you. But there are some individuals that do it at home. Stacey Simms 9:24 And okay, so this sounds like a very foolish question, but I don't we're just at the beginning here. How do you do it? I mean, do you literally take a regular vial of insulin and then dilute it at home with you pull it out? You put I try to think of how I would do that. Dr. Henry Rodriguez 9:39 Well, I mean, you have a while of the diluent. And then you introduce however many units of insulin internet, we used to do this back in the old days request from our therapy, you know, we could tailor the concentration to provide a volume that was reasonable to inject it sir doable, but, you know, we, I generally prefer to go with simpler, not never going to be foolproof, but making it less likely that an error is going to occur. Stacey Simms 10:17 I know that people really have good success with it, but it would make me very nervous as Dr. Henry Rodriguez 10:24 I share that Stacey Simms 10:26 was just a go. I mean, insulin we know has a shelf life, so to speak, you know, out of the refrigerator for 28 days and in the refrigerator for the date that's on the packaging, just diluting it change that. Dr. Henry Rodriguez 10:39 It shouldn't but obviously, as you indicated, I mean, you want to do it, and then this sterile fashion as possible. So you know, it I, and again, I'm stating the obvious here, but, you know, we think 28 days, it's not because on the 29th day, the insulin no longer functions, it degrades over time. And considering particularly when you're dealing with small doses like this, and considering the accuracy that we try to achieve with regards to dosing for the individual carbohydrates for the correction doses, you if if on day 45, your insulin is 90% as effective as it was in day one. That's not ideal. So that's why we generally encourage people to rotate out the vial over the 10 every 28 days now, in a child that isn't using very much insulin, you know that that means you're disposing of a lot of insulin. And so you know, there is a certain level of waste there. What we typically try to do is, you know, your pens hold 300 units, your vials hold a full thousand units. I think, if you're looking at it from an economical standpoint, even if you cannot use the pen to the The video says you can draw from the pen with a syringe. However, I think it's incredibly important that folks understand that once you've done that with a pen, you're going to potentially introduce error to any insulin you deliver with the pen mechanism. In other words, you're changing the volume within that cartridge in such a way that if you then turn around and use that pen, the way it's intended, you run the risk of inaccuracies in the dosing. So we always tell folks, once you've drawn from a pen with a syringe don't revert to using that pen has as an injection device by itself. Stacey Simms 12:37 Yeah, yeah, we do that we actually pulled insulin out sometimes to using the pump from a pen. But then you cannot use that pen to inject as a pen. That's it. It's done. If now it's just a big dumb vial. You can't use it anymore. Dr. Henry Rodriguez 12:50 It's a little it's a little Stacey Simms 12:51 it's a little dump file. Um, okay. You mentioned instead of diluted insulin, that you would prefer the precision of an insulin pump. And this isn't an editorial statement, but I'm just thinking when I remember when my son was on the insulin pump, he was two and a half. And I see these babies that are on insulin pumps, and the babies are so teeny tiny, you know, and the pumps are so large, this isn't really a medical question. But they really do okay on them. Dr. Henry Rodriguez 13:20 They do they, I mean, you you make allowances I mean, if you think about So, so here is where your choice of pub is important. You know, the easiest pump is is the only pot I mean in terms of educating people how to use it, in terms of placing it and so forth. The problem is is you appreciate the pod takes up quite a bit real estate, when you compare it with a tip you know, and otherwise traditional infusions site. So that comes into play as well. I mean, typically you're placing the pod either on the fly of an infant or a box and, you know,...
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Minisode #2: Sleepovers & Type 1 Diabetes - What Worked For Us
01/09/2020
Minisode #2: Sleepovers & Type 1 Diabetes - What Worked For Us
Are you worried about sleepovers? Wondering how to plan? Stacey answers a listener question and explained what worked for her and Benny. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 This minisode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom. Real life stories of parenting a child with Type One Diabetes. Available now as eBook paperback and audio book, Learn more at diabetes dash connections.com Announcer This is diabetes connections with Stacey Simms. Welcome to another of what I'm calling minisodes of diabetes connections. These are going to be shorter shows just me your host Stacey Simms, sharing some thoughts, advice and experience. As always keep in mind, everything I'm talking about here is through my personal experience as a parent of a child with Type One Diabetes. I am not a medical professional. I am the author of the world's worst diabetes mom. So please keep that in mind. As you listen. I'm going to be talking today about sleep overs and what worked for us and this was sparked by a message I got from Mike. We talked about Mike and his son Ryan, in one of our last Tell me something good segments of 2019. And Mike followed up and asked me, Ryan is I believe in third grade. And he was asking me about sleep overs for the future. So I thought this might be a really good time to talk about what we did and what worked with the backdrop of Benny, my son being diagnosed before he turned two and he is now 15. We give him a lot of independence. Just a couple of weeks ago, he went on an overnight with the wrestling team. They were two and a half hours away. We did not go through everything as I would have with a fine-tooth comb two years ago with the wrestling coach or the team mom, although everybody knows he has type one. I made a plan with Benny and he was fine. I don't expect anybody to start out that way. I mean, remember, it's been 13 years of type one for us. And I am I should say, a mom that really pushes independence toward my kids. My kids push back at me, both of my kids wanted to go away to sleepaway camp when they were little. So that's the backdrop that we're working on. But here's what we did. And here's what I think is important for anybody who wants to start sleep overs. First of all, you’ve got to be okay with sleep overs with or without diabetes. Some people don't like them at all and don't want their kids to do them. That's fine. As long as it's not because of diabetes. I don't think anybody should feel, you know, shamed or embarrassed or bad about that. That's a parent decision. And I've seen online where some people have said, well, it's part of growing up and don't ruin their fun. Look, if it's not your thing, it's not your thing. Don't do it. I'm actually not a big fan of them myself. I find them to be a giant pain to host at my house. And then I worry when they're not at my house and nobody sleeps. Look that some people love them. And if you're listening this far, you're probably thinking about doing it. Alright, so here's what I think you need to keep in mind. First of all, I think your kid should be able to check his own blood glucose and give insulin - with supervision, right? But a child who's going away for an overnight really needs to be able to poke a finger. Get a blood glucose reading. I don't care if your kid uses a CGM. This is something that every kid needs to be able to do if they're away from home, even for a night and give insulin using an insulin pump, or if on MDI, multiple daily injections, got to be able to do it. Otherwise, you're in a situation where you're really leaning on the host parents to go above and beyond and they probably have other kids to worry about that night. So in my personal feeling and experience, I just did not ever asked any other parent to handle Benny's pump or check his blood glucose. You may have a relationship with your friends where they do that. We did not. And there's nothing wrong with giving your kid a goal. You want to go on sleep overs. Hey, let's work on doing these things. If you don't have a CGM, it really is okay to let your kids go on sleep overs. We did not have a continuous glucose monitor. Until then he was nine years old. So we had seven years of no CGM. Is life better with it? Heck, yeah. Would I give it back? No, thank you. But my point is that you really can do this without a CGM without remote monitoring. And here's how we did that. Okay, so in the couple of years before Benny had the Dexcom, we would check in with him at dinner, and before bed, and I know this is gonna sound terrible. He didn't even have a cell phone. I feel like a stone age parent. But we would check in with the parents we would call the house or they would call me from their cell phone, or we would just text back and forth, I would check in with the parents. And we would say, What's blood glucose? What are you eating, blah, blah, blah, blah, blah, and make a plan. Same thing before bed and I use that loosely, we would set up a time with the parents, you know, when they were little, it was probably 10 o'clock. And I would check in what's going on with blood glucose, what's going on with food, and we would decide what the rest of the night would bring. Ask your doctor about this as well, because you might consider increasing the target range overnight. You know, it means some math with multiple daily injections. And it probably means just changing a pump setting or even a temporary pump setting if you use an insulin pump. Now before you yell at me, “I don't want to increase my child's target range, we keep it tight at 85.” Well, you might have a problem with sleep overs. If you want to keep your child within a super tight range. I don't think the first sleep over is the time to do that. I think you're setting yourself up for a lot of stress. And I think you're setting your child up for a lot of stress. In most insulin pumps, you have a target number, and then they do they try to do up and down you know within 20 points of that. So if your target number in your pump is 80, move it to 120 for the night. If your target range is 120 to 180 for the night for one night, talk to your endo before you do any of this, please tell them the crazy lady on the internet mentioned doing it. But all kidding aside, I really think moving that target range up helps everybody sleep better for one night. Now, what about that overnight? If you have remote monitoring, you might think well, that's easy. I'll just watch. I'll stay up and watch the numbers all night long. You can do that. Or you can kind of figure out in your head, When am I going to call, right? When am I going to really decide that I need to intervene. And again, this is personal. Certainly, for low blood sugars. You got to make a plan. And what we did even before CGM is I would always send low stuff now you gotta send it along. I never assume that somebody has it. Because even if their house is stocked and man, Benny has a friend and they keep a giant fridge of regular soda, all different flavors, like it's their thing, but it's all regular, it's all full of sugar in the garage. And you know, you might think, well, he's all set. But you know, your kid may not want to go out of the room in which they're all sleeping or spending the night to go by themselves to the kitchen and the fridge. It's a strange house. They don't want to wake people up. You know, a lot of kids get on comfortable, they want to be polite, they don't understand that the parents are there to help them, you know, so you don't want your kid running around somebody's house low. So I sent everything I want him to eat or drink. If you have particular snacks that you use when their kids low that you know work, send them along. And what we always did was send Benny with a Gatorade, one of those medium sized bottles, it's a lot more carbs than I'd give for a regular overnight low. I think a bottle has 30 or 35 carbs in it, where we usually give like 10 right, but it's easy. So our rule on sleepers is if you wake up and feel wonky, drink the Gatorade, drink it first drink at all, and then check. So when he was younger, he would drink first and then check by poking his finger. As he got a little older, he would check and look at the receiver. Now we can wake up and look at his phone these days. He really does look before he drinks most of the time. But if he feels low, I don't care what the CGM says, drink the Gatorade. And that has never been a problem. He's never woken up and been high and then had the Gatorade you know what I mean? He's never miscalculated. It's always been, I'm low, I'm drinking, I'm good. But what are you going to do about overnight lows, this is a time to sit down with your child or depending on age, make the plan, tell the child and tell the other parents, you know, if my child is below 80 for X amount of time, I'm going to call him or I'm going to call you and ask you to treat. If my child is below 60 for X amount of time, I'm going to call you, you know, things like that. I would make a plan in your head. Think about it, think about how you want to handle it, and then share it with the other parents. It's tough, right? Because it's that fine line of not wanting to scare people not wanting to have your child excluded in the future because it's too much work. But it's also a line of information. They need to know these things. When he was very little, I would send glucagon I would talk about it. I would train my very close friends, just two or three people that he regularly spent time with and I would train them on the glucagon. You know, it's funny, I stopped because I read a study that shows in the majority of cases, caregivers, even trained just messed it up. They didn't use it right, because they were under so much stress. So I always threw it in his bag. But I never trained anybody again, I would include icing, you know, and I had cut the tip off, because I was always afraid that he'd be low. And you know, they have that stupid cap, and then you open it in, you have to cut it or you’re biting it off. I didn't want that happening in the middle of the night. So I would always cut the tip off. And I would talk to them about that, rub a little icing on his guns. But I would also always say, look, it's been X amount of time and we've never had to use it. Right. It's been eight years it's been 10 years and knock wood, right? We've never had to use it. And I think that was reassuring as well. But when you have a sleep over, you never expect an emergency. But when I was a kid, I had a sleep over and my friend cut her leg on the edge of I think it was the edge of my trundle bed. It was metal. I mean, this was back in the 70s and she could have deep enough that we had to go to the hospital and we had a babysitter. My parents weren't even there that night and we had to go to the emergency room and she needed stitches. Crazy things happen on sleep overs. If you're going to have a sleep over, you're prepared to take care of the kid that's there, whether they cut their leg deep enough to need stitches, or choke on a piece of food or having intense low blood sugar. And that's how I usually phrase it because to us, that is how rare it is. That's the chances of it happening or that rare in your case, if you're if you've used glucagon several times, or your child does go low more often. These are things to think about as well and to talk about, and I'll tell you what, with the newer emergency glucagon kits that are out now with Baqsimi and Gvoke this is definitely a game changer. Baqsimi is the nasal spray Gvoke is the already mixed ready to use kind of like an EpiPen. I think you've got a much better chance of caregivers using that accurately. I would send that along for sure. And tell them how to use it especially if you can say hey, it's like an EpiPen. Everybody knows what an EpiPen is. And I think that gives people a lot of peace of mind. We also did test run Now if it's a new family, I really like to do this. We would have like a dinner, play date dinner hang out. And I don't know about you, I don't let my kids sleep at strange houses Anyway, you know, where I don't know the people. So this should be pretty easy. So if he gets an invitation, or you think he's getting to be good friends with somebody, and they're talking about future sleepovers, we always did this. So he'd go to that house for dinner. And he'd stay till when he's little like nine o'clock. And that was a good test run for sleep overs because they could eat, they could hang out, they could see what was going on. And I also made the parents promise to call me with any questions, any questions, no matter how dumb and I would tell them, Look, I'm only going to sleep tonight. If I know that you will call me if I think there's a chance that you won't call me with questions. I will not sleep. So do us all a favor and promise to call me and that usually worked and a little bit of humor. And you know, I don't know why that just reminded me but kind of speaking of humor, did anybody use the share cradle? So if you're not familiar, remote monitoring with Dexcom Share has only been around officially for about four, maybe four and a half years at this point. And I know it seems like it's been around forever, but it has not. And the first iteration of it was this Share cradle. So you would take the receiver, the Dexcom receiver, and you'd slip it into this. It was a cradle it was a little case. And I'll post a picture on it in the Facebook group and show you and you could get the signal then to your cell phone. It was amazing, but it wasn't portable. Well it wasn't supposed to be portable, but people plugged it into a battery pack and threw it in the backpack and took it with them wherever they went. And that was the first official Dexcom portable Share. I mean, not to mention night scout and all the things that that came through the Do It Yourself community. But we had that cradle, and I took it to one exactly one sleep over because it was such a pain in the ass to bring it to find a place where it would pick up the signal where there was Wi Fi. I don't remember what happened. There was a phone issue. And I promise you that night Benny was at a sleep over at Logan's house. And I was gone for 20 minutes. And my friend Karen called me and said, Benny, he says his Dexcom came out. I was like, You know what, spent half an hour sitting the damn thing up in your house. Forget it, just forget the whole thing. Don't worry about it. Tell me not to worry about it. And so I never actually used to the Share cradle at any sleep over. So fast forward to my 15 year old, who spends the night often at one person's house. Now he's got a really close friend. And that's really the only place where he's sleeping over. But he does do overnight trips with school, that sort of thing at the wrestling team, as I mentioned. So now, we just check in before bedtime, really around 10 o'clock, and I say “you good” and that “you good “means is your insulin pump charged? Is there insulin in the pump. Did you do your Tresiba? because he takes long acting along with the pump. And it also means do you have your Gatorade? Now, I know that sounds like a lot in the secret code, but we talk about it I sit down with Benny and I say, What do you need? How can we keep you safe and happy and me happy and not flipping out and not texting every 20 minutes. And that's what we came up with recently. 15 is a lot different than seven in many, many ways. So I wouldn't encourage you to start out that way if you're just starting sleep overs. But also keep in mind, it is hard to believe that in the next year, Tandem and Omni pod are going to be showing that kind of information that I mentioned like is the insulin pump charged it was their insulin in it, it's going to be shown on the remote app. And even though tandems phone app isn't launching with any kind of share remote monitoring feature, my understanding is that you can log into the T Connect account and you can see what's up. So we'll be testing that out in the weeks after we get control IQ. I think the bottom line with sleep overs is they are a fun way to start your kid thinking about independence. They are truly not the time to worry about a super tight blood sugar range. There's going to be weird food, there's going to be weird activity. The idea here is to not let diabetes truly get in the way. Is it there? Yes. Is it going to be very difficult the first couple times, of course, but you can make a plan. You can talk to your kid, you can talk to the other parents and you can find ways to make it fun and make it doable for everybody. One more thing before I let you go, do not misunderstand my attitude. I worry. Every single time that kid goes on an overnight. I worried when he was young. I worry now, I know I'm going to worry when he's older. But the idea here is Look, you're gonna worry you're a parent, but let them do it. You can't let your fear stop your child. Agree? Disagree? Keep in mind I am the World's Worst Diabetes Mom. I would love to hear from you. What do you thinking of these minisodes? Do you have any questions you have any topics you'd like me to address? You can drop them in the Facebook group at diabetes connections the group or ping me Stacey at diabetes dash connections calm and remember the world's worst diabetes mom is available on Amazon in Kindle paperback and audiobook. Find out more at the website, our regular full length episodes here every Tuesday. I'm Stacey Simms, and until then, be kind to yourself.
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Working at NASA's Mission Control With Type 1 Diabetes
01/07/2020
Working at NASA's Mission Control With Type 1 Diabetes
works at NASA’s Mission Control. She dreamed of being an astronaut but her type 1 diabetes diagnosis at age 11 changed everything. Since that day, though, she has found ways to break down barriers and pursue her love of space. April calls herself a "rule-questioner" and shares where asking those questions got her. She and Stacey talk about everything from family – she has two young children – to what it’s like to work as part of history in the space program. In Tell Me Something Good, a milestone for a tween with T1D – and her whole family gets in on the celebration. 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 (Note: this is a rough transcription of the show. Please excuse spelling/grammar/punctuation errors) Stacey Simms 0:01 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. This week, aerospace engineer April Blackwell works at NASA's mission control. She always wanted to be an astronaut, but she was diagnosed with type one at age 11. And that changed everything. But since that day, she's found ways to break down barriers and pursue her love of space. April shares where asking those questions got her and we talked about everything from family - she has two young children - to what it's like to work as a part of history in the space program in Tell me something good a milestone for a tween with type one, and the whole family gets in on the celebration. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Stacey Simms 1:32 Welcome to our first full show of 2020 Happy New Year everybody. Hope your year is off to a great start if you're new to diabetes connections, welcome. I'm your host Stacey Simms. We aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed 13 years ago, just before he turned two. He's now a freshman in high school. He's 15 years old. My husband has type two diabetes I don't have diabetes, but I have a background in broadcasting and local radio and TV news. And that is how you get the podcast. As you have heard, if you are a longtime listener, some new things this year, we have some new sponsors. I dropped a minisode, a short episode last week. We're going to be doing those every week. So you get the full episode, which is something like this where it's an interview and we have some segments and then you'll have that minisode and planning for every week right now. We'll see how it goes. Which is a much shorter episode just me on one topic. And please follow along on social media because we're doing more new stuff this year. On the Tell me something good segment which has become really popular in the show. We're putting that out on social media every week, making sure you're following on Instagram. I am Stacey Simms on Instagram, there's only the one account on Facebook, Diabetes Connections the Group, although I do post everything on our page, but you know how Facebook is sometimes they are just obnoxious and don't show you everything you want to see. Something else I'm trying in the new year is transcription. I am putting in the show transcription of every episode. On the episode homepage. You can go to diabetes dash connections dot come, and you scroll down. Make sure you look at the current episode, click on that. And in the show notes will be the transcription of the interview and hopefully the whole episode as well. as well. Something new we're trying we'll see how people like it will see how you respond if it's popular and people use it will keep doing it. I have had a lot of requests for the transcripts over the four and a half years of the show and as Technology is better and better. It's been a lot easier to get that done. Done. Maybe I'll do it behind the scenes minisode One of these days and tell you about all the changes that we've gone through and some of the technology as podcasting really grows, how things have changed, but I know you're here to talk about April and NASA and how she got involved in the space program. It's such a great story. My talk with April Blackwell 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 is sleek, compact, is 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 Drops of script 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. If you have questions you don't feel like waiting for your next doctor visit. Your personal coach is always there to help. I am so excited to have One Drop on board. Their program is amazing. Check them out, go to diabetes dash connections calm and click on the One Drop logo to learn more. My guest this week is not someone who takes the answer No, and accepts it and goes away quietly. April Blackwell grew up dreaming of the space program. As you'll hear, she watched out for NASA news. Like most of us watched Saturday morning cartoons when we were kids. But a diagnosis of T1D in sixth grade grounded her astronaut dreams. But how did you decide to carry on anyway? You know what did you have to do? To get where she is at mission control. her blog name and her Skype handle are nerdy April, and you'll hear me ask about that. But I gotta tell you, when you talk to someone on Skype, which is how I do a lot of these interviews, the the avatar, the logo, whatever you want to call it, of their name, or their face is on the screen. So the whole time I was talking to her, it said nerdy April on the screen, which really made me smile, all right here, which really made me smile on the screen, which really just made me smile, and I did have to ask her about it. Her story, though, is it's a story of grit, of asking questions and refusing to give up. Here's my conversation with mission controls. April Blackwell. Stacey Simms 0:03 April, thanks for joining me. I'm sure you're really busy. And I appreciate you taking the time to talk to us. How are you? April Blackwell I'm doing wonderful. How are you? Stacey Simms I'm great. And I'm excited to be talking to you. I have lots and lots of questions. But I have to start with, with your name online and on Skype as we're talking nerdy April. Did you reclaim that nerdy title? April Blackwell 0:27 Oh, I am a I'm a proud nerd. I think all nerds who are truly nerds are proud of it. So it actually started though, because the my blog title started as Nerdy April's Space Adventures. And if you take that as an acronym, like, you know, everything NASA related, it spells out NASA so it kind of was a little bit of a play on words and acronyms there, but it kind of turned into just Nerdy April and that's how I've been rolling lately. Stacey Simms 0:59 Okay, So I want to ask you at the blog, I want to ask you about NASA, but let's start at the beginning. You knew that you wanted to be involved in science and in space from a very early age, right? April Blackwell 1:13 Yeah, I was only about five or six years old. I was in a kindergarten and my dad actually, he is an aircraft mechanic. And so there's a little connection there. But he also is just a deep lover of the space program. And he grew up in the Apollo days, sort of that romanticized moon landings and everything and he was just an amateur but it and his love for the space program just really captured me. And so that's kind of where that all was inspired from. Stacey Simms 1:45 What were you doing, though, at age five? I mean, when you were with your dad, looking at stars were you watching launches? April Blackwell 1:52 We weren't watching launches. I grew up in Arizona, so it's pretty far away. Florida, where most of the launches happened. Well, Stacey Simms 1:58 (laughs) I was thinking about on TV. April Blackwell 2:00 Yeah, yeah, I definitely watch some on TV we did have a very rudimentary telescope. So we would go out and mostly look at the moon since that was it a big target we could watch. It didn't have a tracker or anything on it. So it was all manual. And it required some fine tuning by dad before I could look through it. We built model rockets together and launched those later on. I went to sort of local science camp during the summer, and started getting excited about computers and everything that had to do with science. So robots and engineering type problem solving. And so it just stayed with me my whole life. Stacey Simms 2:45 Wow. So when you were diagnosed, not too many years later, you were 11. What happened? were you hoping to actually be an astronaut at that time? April Blackwell 2:55 Yeah, so I i think that was always the pointy end of the spear for was to be an astronaut. And, you know, that's when you watch TV and everything those, those are the people that you see. And so that was always kind of my final goal. When I was diagnosed at 11, it took a little bit of time for me to realize that, you know, astronaut was going to be more difficult now that I had type one diabetes. And some of that sort of came into focus later in my life. But at 11 it was kind of just heartbreaking. You know, I was watching launches and getting excited about space, but then knowing that that probably would never be a reality for me. Stacey Simms 3:41 So at age 11, you know, I guess you have many choices, but you can say to yourself, well, that's that I've got to find something else and be devastated or too bad. Or I'm going to move forward and do this some way somehow. Did that decision happened for you? immediately. Did it take some time for you to continue to love science the way you did? April Blackwell 4:01 It definitely took some time. And I guess I'll just touch on the fact that I think being diagnosed with diabetes at 11. Well, in the first place, there's no great time to be diagnosed with diabetes. But I think being diagnosed at 11, it sort of puts you on this really fast trajectory towards adulthood. Because you want to maintain your independence as much as you can. My parents implemented it, such that I had to be able to give myself shots and test my own blood sugar before I could spend the night at a friend's house, for instance. And so that was a big motivator for me. And I think, you know, maybe I always had a little bit of an inclination towards being a little older than what my physical age was. You can ask my mom I used to wake up early on Saturday mornings, to watch the news, not cartoons, just in the hopes that I might see you know, some information about NASA. But I think, you know, sort of that catalysts of putting me on a trajectory towards adulthood helped steer sort of my ideas about what I wanted to be in the future. And while I knew I could never be, or probably could never be an astronaut, space was so exciting to me and talking about rockets talking about, you know, low Earth orbit and traveling 17,500 miles an hour, five miles per second, thinking about these huge engines that need to take astronauts and supplies up to space, I just couldn't get it out of my blood out of my brain. And so I decided that even if I couldn't be an astronaut, I would love to work in the space program in some capacity. And that sort of led me to looking at an aerospace engineering degree. Stacey Simms 5:54 All right, let's go back for a second about your parents in the transition at age 11. What was your diagnosis story like, were you very sick for very long? I mean, I know we kind of sometimes we talk about it like and then you you didn't have diabetes and then you did and then life went on. Can you kind of fill us in on on how you found out? April Blackwell 6:13 Yeah. So it was, I guess nothing extremely remarkable about it, but maybe that's why I should tell it is because, you know, there is this sort of the normal warning signs that everyone comes up or comes up against. And so it was kind of in the Christmas time frame, December timeframe. I just got a cold. And then, you know, my grandparents were in town for the holidays, and we usually would stay up late playing cards, and you know, eating Christmas candy, and I just, I couldn't I just physically couldn't I was extremely fatigued. And then when I started getting up multiple times during the night to go to the bathroom, you know, my mom bless her heart, thought that I was probably suffering from a urinary tract infection. And her old wives tales, of course, told her that we needed to treat this with the cranberries. Unknown Speaker 7:14 Of course, April Blackwell 7:15 yeah, so. So we hit up the cranberry juice pretty hard for a little while, and it just wasn't getting better. And so we started going to the pediatricians office. And it took almost a week of daily pediatrician visits. I, I joke to that I could just pee on command, because every time I would show up there, they would tell me to, you know, get a urine sample. So it sort of became this joke. And then I was finally diagnosed on December 30. And they told us that we needed to head over to the children's hospital right away straight from the pediatrician’s office. We had no idea what diabetes was about at all. I absolutely had zero idea. I don't think my parents really understood it at all. They were just scared. And so we had we went over to the Children's Hospital, but unfortunately it was a sort of a skeleton crew because it was the holidays and New Year's and stuff. So they told us to just go home. And it turned out that my old pediatrician, he actually lived next door to us. And so he came over for a couple days to help give me some insulin shots and test my blood sugar. While we still had no idea what you know, was to come more shots every single day and blood sugar tests every single day. So it was definitely a steep learning curve as I think most diagnosis stories are. Stacey Simms 8:41 Yeah, it can just take so much time to get the diagnosis. I get so frustrated by that. But you know, at least they got it before it was even more devastating. Fast forward a few more years, you have kept your interest in space as you said, What did you wind up studying in college or did you go you know what, where did your path lead you to continue after high school. Right back to April answering that question in just a moment, but first, diabetes connections. is brought to you by real good foods. Have you tried them yet? high protein, low carb, grain free, gluten free. They have so many delicious products from breakfast sandwiches to pizza. The stuffed chicken is delicious, the little poppers that they make are just excellent. You know, it's really nice to have something convenient when you're not in the mood to cook or if you're a 15 year old boy, you know you're starving and you need something to get you between the half an hour before dinner. So Ben evil just get a little personal pizzas and heated up. We're really big fans of really good foods. I'm thrilled to have them back on the podcast for the new year. The new year and I'm excited to try some of the new products they have out right now. And I'm excited to try some of the new products they have out right now. We will be bringing you some taste tests as we go forward. But find out more and go to their store but find out more, go to diabetes dash connections dot com and click on the real good foods logo. now back to April talking about what happened after high school. Let's go now back to April and I'm asking her about what happened after high school How did she get to where she is now April Blackwell 9:01 Yeah, so I was very fortunate to get a full ride scholarship in state in Arizona, and because of my grades, so I went to Arizona State University and studied aerospace engineering. And then once I got out, I kind of hit a little bit of a roadblock because there was a period of time in the aerospace industry that the space shuttle was looking at being retired. And so the the future of NASA was a little bit unclear as to what was going to happen. So a lot of companies and related industry sort of put put a hold on hiring right around that time. Which was unfortunate but it turned out to be a blessing in disguise because I ended up getting a job working with the army of all things in Huntsville, Alabama. So I moved across the country. Free to work in a triple wide trailer we like to call it in Huntsville, Alabama, which just sounds so glamorous. Unknown Speaker 10:10 Oh yeah, the stars all end up there. April Blackwell 10:14 But it turned out to be a really great experience. So Stacey Simms 10:17 did I also see somewhere where you were testing helicopters? April Blackwell 10:22 Yeah. So that's what I was doing for the army. And it was really awesome. It wasn't it wasn't quite space. But it was a really great way to get my feet wet on just what it means to be an engineer and what kind of engineering I personally like because there's so many different avenues you can go with that degree. So I got to fly on experimental helicopters and boss test pilots around which was really fun. The group I was in actually was really tight knit and it I'd say even more so than my group at NASA Now. And part of that, I think is because, you know, you had to fill out paperwork that said, who in your group would go tell your spouse or your significant other that there had been an accident. And so we really counted on each other to to watch out for each other. And all of them absolutely supported me with my diabetes. You know, my flight suit had specific pockets with snacks and blood testers and stuff. And so we always kind of joked, like, oh, if you need a snack, April always has one in her left lower leg pocket or whatever. Stacey Simms 11:42 Let me just jump in and ask. So when I said you were flying helicopters, I was gonna ask you how the heck did you get clearance to do that as a person with diabetes, but it was as a passenger? April Blackwell 11:53 Correct. Yeah. So I flew on them not actually physically flying them, but it did still require FAA medical clearance which took about six, six months to get all of the paperwork in and get clearance to finally fly on the helicopter. Stacey Simms 12:10 so that's what I wanted to ask you about. Can you talk a little bit about doing this because it's it sounds so exciting and I know so many young people who want to serve in the military or want to fly and Yep, we've just got, you know, the, in the United States, FAA says now you can be a commercial pilot with type one. So progress there. But right, what do you need to do, you know, as we're going to talk about your path going forward, to kind of accomplish what you've done. You've mentioned medical screenings, things like that. You there's just a lot is there a lot of paperwork and exams? I April Blackwell 12:44 Yes, I will tell you it's a little bit of a black box. Even now with the FAA ‘s new guidance. That type ones can apply for these waivers for class two and class one medicals. It's not clear to me how many type ones they've actually accepted into those medical clearance buckets. That data is never published. And, in fact, the process to get a medical for me, like I said, took about six months. And it was really me going to an FAA Doctor who said, Hey, I can't clear...
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Minisode #1: Stop Mindlessly Sharing All Your Diabetes Numbers!
01/02/2020
Minisode #1: Stop Mindlessly Sharing All Your Diabetes Numbers!
Do you share your CGM graphs and A1Cs online? Why? Stacey talks about the trend of sharing everything on social media and wonders if what she learned in her radio career might help us all make sense of when and how to better share. In 2020 we're adding these mini-episodes to the weekly line up. Each Tuesday you'll hear the regular longer format interview shows. Thursdays will be these Stacey-solo shows. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Show transcript (rough copy so please excuse spelling, grammar, punctuation) 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 One Diabetes, available as a paperback eBook and audiobook. Learn more at diabetes dash connections.com This is Diabetes Connections with Stacey Simms. Stacey Simms Welcome to something new on diabetes connections. I'm your host, Stacey Simms. And this is a mini sode, a very short mini episode. I'm going to be doing these in the new year. Just me sharing some thoughts, advice and experience. Please keep in mind, everything I'm talking about here is only through my personal experience as a parent of a child with Type One Diabetes. I am not a medical professional. And I am the author of the world's worst diabetes mom. So keep that in mind as well. One of the questions I get All the time is why don't I share Benny's numbers? Why don't I share my son's A1Cs? Why don't I post more graphs? I do occasionally show some CGM action, you know when I'm trying to prove a point or talk about stuff. But why don't I do that more regularly and especially the A1C numbers? Well, I really did share them for a long time. Benny, he was diagnosed right before he turned two and social media wasn't as big a thing in 2006 when he was diagnosed, but a couple years later, it was and I shared them on Twitter and Facebook until he was about seven, I'd say. And then I became friends with Moira McCarthy, who is a very well known author, blogger. She helps me out on diabetes connections as my co host of the Ask the D mom episodes, and she asked me to think about why I was doing that. And it really did did took me back. I took a step back on that. And after I thought about it for a while, I did stop sharing them. And here's what really helped me. It's one way of looking at it. That might sound funny. Radio really helped me make more sense of how I felt about diabetes numbers. If you're not familiar, I worked in radio for a very long time I started my career while I was in college, at a radio station. I worked at WSYR, I was the weekend reporter in Syracuse, New York for the old news station there. And then after college, I was a local TV anchor and reporter for many years, moved to Charlotte, North Carolina, where I live now in that capacity. I work for the CBS affiliate as a TV reporter and anchor for a couple of years. But I went back to radio for a decade and I did mornings at WBT, one of these big heritage radio stations. So my old Program Director, Bill White, used to caution us against putting too much stock into the ratings. You know, you get these Nielsen ratings, at least you used to in radio, and I want to say you got them every quarter. And these were the ratings that would give us I mean, not just bragging rights, which was a lot of fun to say, you know, we're number one in the market or you know, we're number two or whatever. It was, but they would also set the commercial rates, right how much the sales people could charge for a commercial at any given time on the radio station. Now, it changed a lot in the time that I was in radio, because the ratings systems switched from Nielsen ratings, which were you were writing down what you listen to, I don't know if you ever had one of these Nielsen books, but that's what it was, you would get a physical book. Remember those pen paper like a workbook, and you should write down what you listen to. That's why so many radio stations repeat their call letters a billion times, or at least they did back then. Because they wanted you to remember the call letters when you got your little Nielsen book. So if you're listen to radio station, they're always like news, weather, traffic, you're listening to news talk 1110 WBT, you know, why did we say it a million times an hour, we needed it to stick in your head so you would write it down. But then, really just a couple of years before I left radio, the portable people meter, the ppm system took over and changed everything. So ppm, if you're not familiar, is a system that was developed, I want to say by Arbitron, but now part of Nielsen. So it's like a pager almost, and you wear it. And it detects hidden audio tones, I kid you not within the audio stream, so it logs every time it finds a signal. So a ppm basically picks up when you're listening. And when it came through, there was a lot of talk about is it accurate? Is it biased to younger people who are going to walk around with this thing as opposed to older listeners who can't be bothered, you know, will it pick up stuff in gas station stores that play music or restaurants you know, blah, blah, blah, doesn't matter that ship has sailed. The ppm is now how radio stations get their ratings and it changed everything which is a story for a different time. But I will say if your your local fun morning show is talking less than playing music more, or you're hearing some changes, really you would have heard these almost 10 years ago now and the way you listen to radio Do it was because of ppm and you know now it's debatable whether radio podcasts streaming, that's a whole other story. But so ppm for us really changed the numbers. Our radio station WBT never really sold on those numbers strictly though, because we had a very desirable audience. We had an older audience, our audience had more money, they were more loyal. They were really apt to buy what we were selling. So we did not have to live and die by the ratings, thankfully, and that is what Bill warned us against my program director. If we got so caught up and excited about the really, really good ratings, would we be devastated by the bad, right where we doing a good show where we serving our listeners, my co host, used to say, super serving our listeners, you know, where we doing all we could for our clients, you know, we were doing all this at 5am where we're doing everything we could do, and that's what we were supposed to focus on. Bill's point was Don't let the numbers run your life. Life and a new station. This is really important. Think about when you might listen to your local news station, you might listen when there's a power failure and you need that radio, you might listen when there's a huge news story, you might just listen occasionally. I mean, in the olden days, you'd listen for school closings before the internet. So we'd get these, these spikes that were very attributable to events, right. And then we would get these lows, that maybe were also attributable to events. But if you got emotionally caught up and thought, oh, all these people are listening, because I'm so great. Then you could also get emotionally messed up when you're thinking they're all tuning out because of me. So you can't put the numbers before what you're supposed to be accomplishing. As a news broadcaster. We were there to inform, to entertain a bit sure, but to inform. And I think Bill's advice is really applicable to diabetes. Look, of course, numbers are important. Of course, we need to pay attention to them, but We can't run our lives around them, we can't let them have the emotional power that many seem to want to give them. I mean, I've been guilty of this too. But you have to step back and recognize they are information, they are guidelines, they are not your value. If your self worth is coming from your child's or your A1C, I'd really encourage you as Moira did to me years ago, step back and think about that, think about why. And then I would encourage you to try to move that good feeling off of those numbers and onto other ways that you're dealing with diabetes. I mean, for very young children. I mean, that can be such a roller coaster. The victories for me, were the smiles with grandparents, you know, bedtime snuggles, milestones like potty training, you know, even when your your little kid learns to share, right? These are all ways of celebrating and as your kids get older, participating in sports or in the school play, getting their drugs permit Ben he just got his somebody come hold my hand. Oh my god. But these are things to celebrate first date, right? Oh my gosh, these are ways to celebrate with diabetes that aren't about the numbers. Just thinking back right? What stands out if you have older kids, or if you're an adult with type one, what stands out for you? Do you remember that excellent doctor's appointment? Or do you remember feeling really good and doing something that you loved? Because you have to be in range have to be taken care of yourself to be feeling good at these times is all is my point. But you're not focusing on the actual number right? If you're calling your endo appointment, mommy's report card, I am talking to you. Because what happens is, so many people share only the so called good numbers, right? But they don't want to share the so called bad ones. Because if you have publicly celebrated, let's just say a 6.5 A1C you may feel really bad about 7.8 or higher? I mean, let's be real here. And something else to keep in mind. And maybe the most important thing is that for parents, you're making these choices for your kids. You're putting their health information online, you're putting it out there adults, this is different for you. I mean, these are your choices. But parents, you're making a decision for your kids and you're really not getting their okay. And I don't think a seven year old can really decide if it's okay, right. Remember, if you're in a private Facebook group, nothing online is private, nothing you're sharing online once you hit send, or put it out there. Nothing online is private. And that's really the biggest reason why I stopped sharing Benny's A1C. I decided there was no reason for me to leave a breadcrumb trail of health information on the internet for someone and employer and insurer, anybody to find when he was an adult, I don't care how good his numbers have been. And trust me they're far from perfect. Sometimes they're No need to share that. One more thing. There is a school of thought that you don't even need to tell younger children what their A1C is. And I wish I had done that. I mean, I don't really think Benny ever knew until he was out of elementary school. But a lot of endocrinologists are now writing it down and showing the parents if you're in the room together, or maybe emailing it to you later through a health portal, which is protected by HIPAA in a way that Facebook obviously is not. And I think that's great, because you can easily find ways to celebrate or mark time with your kids or, you know, hey, we're at the endo and that's always a reason why we do. We go to a movie, we go shopping, we do a special high five, whatever works for you. But you're not celebrating the number per se. And back to Benny for a moment. Here's how I know he didn't know what his A1C was when he was little. He had a nurse asked him once he was a camp so he was in a not normal setting. And the kids were eating ice cream and I don't know why the nurse was involved. Maybe they were doing it at the health center. Who knows But he asked for his ice cream. And she said, Oh, I don't know. Should you be eating this? What's your A1C? He was about eight, maybe nine. And he said, I don't know. He turned around and found another nurse and said, Can I have the ice cream? She was like, yeah, sure, Benny, no problem. And, you know, he told me that story when he came home from Camp, but I was kind of glad he didn't know. And I was really glad that he was smart enough to find somebody to give him the darn ice cream. I am not trying to be a killjoy here. You know, we all have what works for us. But I urge you try this. You may find it incredibly freeing not to share your numbers not to share your child's numbers. Come on, you are all so much more than the A1C or the last 24 hours on a graph. Right? You're not raising a number. You're raising a child. I hope this gives you something to think about. Agree. disagree. Remember, I am the World's Worst Diabetes mom. And the book is available on Amazon paperback eBook and audio book and it's available at diabetes dash connections. com where you can always find out more. I hope you come back for our regular full length episodes. Every Tuesday, we feature interviews with newsmakers, athletes, artists, celebrities, authors, speakers, and everyday people, quote unquote just living with Type One Diabetes. I’ve been doing the podcast for four and a half years now, and I really hope you find episodes that you love. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Benny 12:34 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged Transcribed by Otter.ai
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Control IQ Gets FDA Approval: All About Tandem's Hybrid Closed-Loop System
12/31/2019
Control IQ Gets FDA Approval: All About Tandem's Hybrid Closed-Loop System
In this episode, Stacey talks to Molly McElwey Malloy, Tandem's clinical outcomes manager with behavioral sciences. Control-IQ technology is an advanced hybrid closed-loop system that uses an algorithm to automatically adjust insulin in response to predicted glucose levels to help increase time in the American Diabetes Association-recommended target range (70-180 mg/dL).* This is our last episode of 2019! Stay tuned for new sponsors, new segments and new weekly mini-episodes. To use Control-IQ, you must have the Tandem t:slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump.. it does not require a purchase of new hardware.. no new pump needed. You do need to have a prescription from you doctor. If you are an in-warranty customer the Control IQ update s free. All software updates released through 2020 are free to in-warranty t:slim X2 users. It doesn’t matter when you choose to download the update. The no-cost is determined by our release date, not your download date. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription (Note: this is a rough transcription of the show. Please excuse spelling/grammar/punctuation errors) (Time codes listed refer to times within the interview, which starts 5:30 into the episode) Transcript: 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 One Diabetes, available now as eBook paperback and audio book, Learn more at diabetes dash connections.com Welcome to our last episode of 2019 and it's a big one all about Control IQ the new hybrid closed loop system from Tandem recently approved by the FDA. I'm talking with Molly McElwee Malloy from Tandem. And I'm going to try to keep this intro short. I know you all just want the information. But I do have a few housekeeping and other things to get to. You can always skip ahead if you wish, I will not be insulted. But first while my regular podcast listeners insulted first when things like this happen when there is a Big news in the community. We get a lot of new listeners. So I want to go through some basics first. Hi, I'm your host, I'm Stacey Simms. My son was diagnosed 13 years ago, right before he turned two. He is now freshman in high school. He is 15. And boy, time has really flown. My husband lives with type two diabetes, I don't have diabetes. I have a background in broadcasting, local radio and TV news. And that is how you get the podcast. We are four and a half years into this podcast. We have more than 260 episodes. So I would encourage you to head on over to diabetes dash connections. com If you're brand new, scroll through. There's a very robust search feature. So if you want to type in Tandem and see what we've done over the years leading up to this release, or any other topic pertinent to diabetes, you can go ahead and do that it's very easy to search through. It's very easy to search through, and everything you'd want to know about the podcast, including how to subscribe for free on whatever app you want to use. Joining the Facebook group all about me, it's all there on the website. Okay, let's talk about Control IQ. What is it? Control IQ technology is an advanced hybrid closed loop system. It is the software within the pump. It uses an algorithm to automatically adjust insulin in response to predicted glucose levels. So we're going to talk about that to help increase time in range. Time in range and the recommended target range is 70 to 180. And yes for the International listeners we have quite a few. This is a USA centric episode Control IQ is rolling out in the US. We will be staying up to date on when it is available in the rest of the world where Tandem is already in your marketplace. But this is a USA centric episode so when you hear us talking about numbers, that's the system that we're using. For Control IQ you must have the Tandem t slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump. It does not require a purchase of new hardware, no new pump is needed. You do need to have a prescription from your doctor and you will hear more about that if you are an warranty customer, the Control IQ update will be free. All software updates released through the end of 2020 are free to in warranty t slim X to users. It doesn't matter when you choose to download the update. The no cost is determined by Tandems release date, not your download date as we're right at the beginning of 2020. That probably doesn't matter to most of you listening but I think it's important to point out. Control IQ is FDA approved for those 14 and up. It is not a replacement for diabetes management. And it is not a cure. It is not a cure. There is so much information about this online already from Tandem. I will be linking up a lot of stuff on the episode web page. They have YouTube videos. There's so many features that we don't even get to in this interview. I mean, the tubing fill, you can now set that to vibrate so it doesn't beep when you fill the tubing and change the cartridge which I know Benny just so excited about but in this interview, we really just scratched the surface. So please know I will be doing follow ups and there's a lot of supplemental information on the website. Quick note about Molly McElwee Malloy, who I'm talking to from Tandem, she was diagnosed 22 years ago this week as a young adult. And as you will hear, being in an artificial pancreas trial, changed her life. It changed her career path, everything. And she is one of many, many people who has been with this project for a very long time. We do spend the first four minutes of this interview on that subject on who Molly is and getting to this point. And if you're dying to get Control IQ info, again, go ahead and skip ahead. But I think her story is an important part of all of this and I think it sets up all the information very well. One more thing. There will be a full transcription available for this interview. A lot of you have been asking for that. That's a new feature I'm making available for the podcast in 2020. So stay tuned on that for every episode, but this transcript will be right on that episode web page. The best way to read it go to diabetes dash connections. com scroll down and click on this interview to open it up. All right here is my interview with Tandems, Molly McElwee Malloy, Stacey Simms 0:01 Molly, thank you so much for joining me. I can only imagine how busy you are and how full your inbox is. Molly McElwee Malloy 0:08 It's a really exciting time. For sure. Absolutely. No doubt. Stacey Simms 0:15 Well, congratulations. We're very excited. I mean, personally and professionally. I can't wait to talk to you about this. So let's just jump right in. I do have to ask you though, for people who may not be familiar, tell me a little bit about your background because Boy, you have been with this project. Really, I want to say almost since day one, tell me about your involvement with what has led to Control IQ for Tandem. Molly McElwee Malloy 0:39 So I'm, I'm sort of what you would call like the obsessed fan who went rogue. So I, I was in an artificial pancreas prior in 2006. And full disclosure, because no surprise to anybody who knows me but I have a bit of OCD. And for me, that was manifesting is testing my blood sugar 30 times a day. Wow. And yeah, it was really out of Control. Or as most, you know, endocrinologist say, I was a perfect patient with zero Mental Health Quality, but life like it definitely was impacting my quality of life. But I participated in one of these trials. And it was, you know four IVs and somebody at your bedside for 32 hours and the whole nine yards, but for me, it was life changing that for a period of time, I could relax for the first time and just let somebody else take Control. And everything was fine. And I sort of just realized that deep breath at that time was exactly what I needed. And I and I was like, Well, I'm going to do whatever it takes to work on this project. So you know, at the time, I was a professional musician, which makes getting into science.. Stacey Simms 2:05 Be vert interesting, Molly McElwee Malloy 2:06 Just a super, super easy transition (laughs). As logical obviously, as you've spent your life, being a musician that makes sense to just go into science. So I went back to school for nursing and continued to participate in trials through nursing school. And then when I graduated they hired me on at the Center for diabetes technology at the University of Virginia, which is where all of this magic was taking place. And I have not looked back. So they hired me in 2010 have been acquainted with the algorithms since 2006 as a patient, and here we are, it's almost 2020 it's 2019. And it's finally getting to market so I've done that and I worked with a startup called Type Zero technologies, which commercialized The algorithm licensed it the Tandem diabetes care. And then I jumped over to Tandem to pursue commercializing the algorithm. So, a little bit of like a dog with a bone, go and fill it out. But it was sort of my glimpse at sanity. Like, this is what sanity, this is what my life could look like with diabetes. If something was managing it in the background, I was really only worried about the big things. And I saw that and I was like, that is exactly what I will do. That's what I'm gonna be doing. I will do this all the time until it gets there. And it is. It's been a very long journey. very rewarding journey. Very difficult journey, but to be here today, wearing the device is magical. Stacey Simms 3:54 Okay, I'm gonna stop you there. I could talk to you for a long time about the process. But as you listen, I know you want to get to Control IQ. So I will just say, I've talked to Molly a couple of times before and I will link up the other episodes because the background on this, as you mentioned, type zero, you know how Tandem came to have that software, the development of all this, it's really important. And it's really interesting to listen to. So I will link those episodes up. But let's talk about Control IQ, so many questions. What are the what are the first steps? What's going on right now. Molly McElwee Malloy 4:27 So because of this all happening right around holidays, what we're doing with him doing kind of behind the scenes and, you know, as we speak up through the beginning, or first two weeks of January is we're educating the whole you know, diabetes educator and endo workforce, getting everybody up to date, getting everybody ready, making sure we're on the same page. So that when you go to your endocrinologist and say I want this you know that customer, they are well informed of what's going on. So all of that's been going on in the scenes like, you know, just earlier today I was on the phone with 10 different doctors trying to make sure that we all understood everything. So we're, we're educating as fast and as seriously as we can. We have an excellent online training program. So you as a customer, if you are current X2 user base, like you are just x to the end user will get an email, and I believe it's the first the second week of January way of January 13. That week, you'll get an email saying, hey, go ahead and login, update your information, make sure everything correct when you get the prescription will, you know will we talk to your doctor and will help you if you're an existing customer with we have that information kind of fully loaded, ready to go. You could also log into the portal, the customer portal and you know, go ahead and start that process. I'm interested, I want this and talk to your doctor. That's all that's one place. It is super easy scripts with your doctor that gets loaded. It's an automatic process. Once we have that, if you've already got that, like a blanket prescription from your providers practice is already going with us and we're trying to initiate that next two weeks. That's already there, we will automatically check on the background and then it will, you know, provide us with going ahead and giving you the green light to issue the next email which will be your training is ready. And then you will do the online training. And it will give you the ability to learn all about Control IQ. It's very interactive, you can't hit play and walk off. I know people do this on other training like I know we have webinars and we push play and we walk off we do the dishes when we come back. You cannot do that with this. It actually won’t advance to the next part until you've done x, y, z that is asked you to do. We've designed that for a reason so that you actually come away with the knowledge you need to operate the the algorithm and integrated into your life. So then you will answer a couple of questions and take a quiz. And you will have had to pay attention to get this information correct. And if you don't, you can go back and re learn until you do answer the questions correctly. Once you do pass the quiz and the module, you will then get the download code which is specific to your serial number of your pump. So I know there's been some questions, people sharing about work arounds, can you share it? The answer is no, no. You can't share it. It is your learning and your code is specific to your serial number. So all of that lines up perfectly to allow you to download the software update. And that will be, you know, everything will walk, walk through all the steps and pretty obvious, but for those who think that this some idea that someone will get a code and then we could post it on the internet somewhere and share it like, sorry Debbie Downer you're gonna have to get this on your own. Like, we work smarter than that and the FDA is smarter than that, and they're not gonna allow one code to rule them all. Yeah, so everybody's gonna have to do this upon their own and because it requires a prescription you have to go through all this stuff. Stacey Simms 8:37 When you mentioned training healthcare providers, and this might be a really dumb question, Molly, so forgive me, but is do they go through a more in depth training? It just seems like a couple of weeks to try to get all of these endocrinologists and CDs on board is a tall task. Do they all have to be trained before they can write the prescriptions and then what is their training like Molly McElwee Malloy 8:59 this have to be trained before they can write the prescriptions we want them to be trained before, obviously, we'd like them to have knowledge before they write the prescription, but they don't, they need the training to be able to treat patients, right. And I want them to be we want them all to be informed before they write the prescription to know if this is a good choice for the patient. But you could always write the prescription and then the person doesn't do the update. Right. So there's, you know, there's, there's always a couple ways to be kept it at the end if they don't intend to write the prescription. But writing the prescription with knowledge is always excellent. And we want to be aware, it's really, you know, an hour and a half two hours of their time. It's not a whole day thing. I know with other systems, there's been some feedback about like the links of training being really long and and we took all that into consideration. You know, we got the beautiful gift of not having to go first. Right? So we got to see what happens with the market with feedback before we did it. And we implemented a training and the good news with Control IQ is, it's not difficult. You do have to understand some concepts and some differences. Right, but it's not hard. Stacey Simms 10:27 I guess my concern was that people would be calling their health care providers and saying, Are you trained? Are you trained? Did you do this yet? Because you could see that happening. Molly McElwee Malloy 10:35 Yeah, and the good news is that we're getting them trained. So and it's on there's an online module they can take to do this. Like it doesn't have to be me on the phone with somebody train them, although we are doing that for them for larger offices that need, you know, to have that interaction, but there is an online module that they can take to get trained. So we do have a provider but site that has been launched. We've been very patient centric and very patient forward and our website and our outreach, and we are adding new dimension to both Tandem and our website, and how we are looking at our business. So, you know, to be honest, when you do this business, there's, there's at least three customers you're looking at, right? There's a patient, there's the provider, and there's the payer, and all those things need to be addressed. And we've been very patient centric. And now we are and we are continuing that we're just expanding to be very have people that are actually focused on providers. And so there is a portion of our website now dedicated to health care providers, and their education and resources specific to them. So that is launched that is up and running, and it's actually a very elegant website a host of resources for healthcare provider. Stacey Simms 12:10 Alright, so let's get to the moment at hand - Control IQ. How does it work? Talk to me a little bit about you know, the pump settings or what do we have to do you? What is the? What is the basis of Control iQ? Molly McElwee Malloy 12:24 Yeah, so this is the beautiful thing and I love all things that are based in science reality and truth, right? Like, I don't like we and Tandem doesn’t like this either, but we don't like you know, don't let trick and we don't like you not be able to see what's going on. So the beautiful thing about Control like you would like about all of Tandem technology is that it stays in the science and the foundation that you know in love, which are pump settings that you already understand. So the traditional rules that healthcare providers have used and I can provide you a link to article that’s helpful on you know 15 and 1800 you know, rules that they've always used and you know, implement duration action that is built in on the foundation of many many many decades of science. So, the all of that I can provide you some links and educate people about that what does that mean but your traditional insulin to carb ratio, sensitivity factors and basal rates all still apply. We use that the Control IQ technology uses your pump foundations and your foundations order the basal rate into the carb ratio, correction factor to operate from right so those are specific to you, they always have them they always should be. And that is where we you know, we start the game of Control IQ technology. So Using those settings, Control IQ technology, what we making adjustments from your baseline parameter, so your baseline parameters are exceptionally informative of how Control it technology will work. Stacey Simms 14:12 So we've been using a pump, let's say, you know, our personal case for 12 and a half years, we're pretty good at the settings. You know, we're going to talk about insulin on board because that's an interesting change. But we have our ratios and our, you know, our sensitivity factor. People like us, you know, a lot of people who are used to changing things on their own, you're basically saying we're not gonna have to learn to use the pump that we know so well. Molly McElwee Malloy 14:38 Correct. Right. So all the settings that you know and love are great. And you will move forward with those right? Okay, people coming from other systems, like maybe different pump or multiple daily injections, things like that. You're going to want to establish some really good baseline...
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Planes, Trains and Type 1 Diabetes: Catching up with Jason Viglione
12/17/2019
Planes, Trains and Type 1 Diabetes: Catching up with Jason Viglione
With holiday travel gearing up, we decided to check in with someone who travels the world. Jason Viglione is always on a plane, train or car for business and has figured out his own best practices for pump, CGM and the whole routine Jason was diagnosed just last year.. his anniversary date is coming up in January. Like a lot of adults, he had trouble getting the right diagnosis. We’ll hear that story and a lot more.. In TMSG – a cameo in a Hallmark Christmas movie.. a diaversary celebrated in a big way.. and a little independence for a tween with T1D that's worth celebrating! 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!
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Audio Excerpt: The World's Worst Diabetes Mom
12/11/2019
Audio Excerpt: The World's Worst Diabetes Mom
Listen to an excerpt from The World's Worst Diabetes Mom: Real Life Stories of Raising a Child With Type 1 Diabetes! If you like what you hear, get the audio book for FREE. Diabetes Connections listeners can and you're already an Audible member This chapter is all about using social media to thrive with type 1 diabetes. But of course, it's also about the many mistakes Stacey has made along this way. Hear the story of how she bolused her purse, instead of her child. Read the transcript below Transcript of the excerpt: "I think there’s an argument to be made that we can get more out of social media when we share our mistakes and worries than when we only post when things are going “right.” I know a lot of people love to share straight CGM lines and big and small victories, and that’s great. I love to celebrate along with you! But over the years, I find I have more of an impact and get more support when I pull the curtain back and show what’s not going right for us. The first time I realized this was a scorching summer Saturday in 2010. Benny had just finished Kindergarten and Lea, 4th grade. It was 101 degrees in Charlotte. I took the kids out to and then to a nearby splash pad. It was exactly what we needed and we spent the afternoon inside at home, trying to beat the heat. The afternoon blood sugar check was a shocker: 500 BG. Big bolus, but an hour later Benny said he didn't feel well. At this check we got HIGH GLUCOSE! No ketones, thankfully, but something was very wrong. The meter remote was across the room, so I asked Benny to take his pump out of the pouch he wears around his waist. That’s when the problem became very clear. He had no pump to take out. Uh oh. Even though the pump we used was waterproof, we usually took it off when Benny was in or around water. It wasn’t the rough play – the insets stayed on just fine for that kind of thing and the pump is durable. But Benny usually went low during swimming and taking the pump off helped keep him steady. Note: this definitely depends on the person. As Benny gets older and bigger, the energy he uses for swimming and water play has changed. When you think about a 5 year old swimming, think how exhausted they get – they use their whole body every second! A 12 year old is still very active but might be throwing a ball in the pool and hanging out for hours rather than swimming nonstop for 30 minutes. We found as he got older, we needed to increase the basal rate for a couple of hours after swimming if we’d disconnected for more than an hour. As I said earlier, check with your endo about disconnecting a pump and/or adjusting the basal rates on a waterproof pump or pod. Many people have also found success using long-acting insulin along with the pump (also called “untethered) or even switching back to multiple daily injections for vacations or summer if your child swims a lot. Whether your child swims for ten minutes or ten hours, you do need to put the pump back on! We had forgotten that part. As soon as I realized that, I immediately remembered what I had done. We’d taken off the pump and thrown it in my purse. It was still there, just blinking at me and dripping insulin. All that time I was giving Benny insulin using the remote meter, I’d really been bolusing my purse!! Once we figured that out, it wasn’t a difficult fix. We clicked the pump tubing back into the inset, did a giant bolus, checked ketones (nope) and refilled Benny’s water. I spent a moment wondering if I should wash my purse or just wipe it out. And if I’d ever get rid of the insulin smell. Ugh. 15 minutes later I grabbed the meter to see if the insulin had started working. Yes, I know it was too soon, but I was nervous and anxious and…. I dropped the meter. It slipped out of my hands, onto the floor and cracked. I have backup meters, but this was the brand new remote meter we’d only had for a month. After almost 4 years of pumping, we finally didn’t have to reach into Benny’s pouch to pull out the meter and could easily dose him while he slept. I didn’t have to turn around in the car while my husband drove and dig around in Benny’s car seat to bolus him for road trip car snacks! We loved that new meter. And now, it was all in pieces on my kitchen floor. Talk about feeling like the world’s worst diabetes mom. My kid was high because of my doofus forgetfulness. Our brand new amazing remote meter was in pieces. Surely, no one was as horrible a mom as me. I took my frustration to Twitter. If I tell you the responses were life-changing, I’m not sure that would be an exaggeration. Remember, this was back in 2010 when social media wasn’t was it is today. I wasn’t sure what I would get. Scorn? Judgement? Turns out, all I received was support: Here are some of the great responses: @The Party Wizards oh no simple mistake!! At least it can be easily corrected with pump and Benny had been nice and active to take the edge off!! @SweeterCherise Cherise/LADA hugs! How's he doing? @Leighann D-Mom @ It happens. You realized it and are taking care of the situation. He'll be fine. ((hugs)) @ Kate Banks diabetes is 24/7, you are not. You can't be perfect all the time. Its not your fault, you treated it, it's over :) @ Stacey D. @ glad he's ok! And hope his BG gets back to normal soon. Other people had done this. Other people made it through. They said I didn’t have to be perfect and that Benny would be fine. It’s hard to describe how much better that made me feel. I was still mad and frustrated, but I was no longer alone. I think I was just as relieved to hear that Benny would be okay – that this had happened before – as I was to see these other women not judging me. Not shaming me. They didn’t share the post and invite others to pile on. Instead, they supported me. I didn’t know them but they were willing to reassure me and lift me up. Of course, Benny was fine – his blood sugar came down, he was safe and happy and thought the idea of bolusing my purse was very funny. I called Animas and they overnighted a new meter remote. Ours was still in warranty (barely out of the box) so they were fine with a quick replacement. As you know, by now, this was hardly our first mistake. But it was the first time I remember admitting to one, publicly. It was incredibly freeing and it led the way for me to share more mistakes and missteps." ----- Get the App and listen to Diabetes Connections wherever you go!
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Diabetes Fitness & Nutrition Expert Ben Tzeel
12/10/2019
Diabetes Fitness & Nutrition Expert Ben Tzeel
Meet dietitian and strength coach Ben Tzeel. He says he started getting hooked on strength training as a teenager and hasn't looked back. Ben & Stacey talk about his wild Instagram posts where he shows you how he doses for food like giant donuts, and carbs and macros and diabetes and exercise.. In TMSG: a girl scout troop decides to educate their community and a comic book from the UK aims to educate about T1D Stacey & Ben also talk about specifics to help her son, Benny, as he begins high school wrestling. At his first double practice (weights & mats) Benny needed to eat 75 uncovered carbs to stay above a blood sugar of 80! ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!
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Living with T1D is a Marathon: Why Run One With It?
12/03/2019
Living with T1D is a Marathon: Why Run One With It?
Diabetes nurse practitioner Michael Greenberg just ran the New York City Marathon – his first marathon – with , a group of people with type 1 diabetes fund raising and training together. Michael shares advice about running and training with T1D, about what led him to change his career path and how his love of comic books and wrestling help him deal with diabetes. He mentions sponsor of Beyond Type Run and Stacey talks about In TMSG: a sports connection results in a real life meetup that one kid will never forget. At the end of the show, Stacey shares details of Benny's recent surgery - as it pertains to type 1 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!
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