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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In the News.. Oral Meds for T1D, Dexcom API News, Closed Loop and Teens, Olympics and more!
07/23/2021
In the News.. Oral Meds for T1D, Dexcom API News, Closed Loop and Teens, Olympics and more!
It's "In the News..." the only LIVE diabetes newscast! Our top stories this week: Oral meds to prevent T1D move ahead, racial disparity in peds CGM use, what that Dexcom API news means, a new study with teens and Control IQ and a summer olympian talks about her recent T1D diagnosis. Join Stacey live on Facebook each Wednesday at 4:30pm EDT! ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcript below: Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more when you have the time. XX Our top story.. A new oral drug to prevent type 1 is moving along in trials. Right now it’s called IMT-002 – and put very simply - it’s meant to block a genetic trait that increases the risk for the disease and is seen in a majority of patients. It’s a new way to think about treating type 1 – phase two studies could start next year. It’s thought that this could help with other auto-immune diseases as well.. the next condition these researchers want to tackle is celiac. XX Could the global rise in diabetes have an environmental component? In an Advances in Pharmacology article, researchers say routine exposure to chemicals that disrupt our endocrine systems play a role in triggering diabetes. These researchers say "We often attribute patient's disease risk to individual choices, and we don't necessarily think about how systems and environments play into disease risk," They go on to say so-called lifestyle factors like exercise and diet fail to fully account for "the dramatic rise and spread" of diabetes. https://www.ehn.org/environmental-factors-of-diabetes-2653768475/how-endocrine-disruptors-contribute-to-diabetes XX A new study shows Black children less likely to start or continue with a CGM after a type 1 diabetes diagnosis. These researchers at Children’s Hospital of Philadelphia or CHOP as it’s commonly known, show that a racial-ethnic disparity in CGM use begins within the first of year after diagnosis. White children were more than two and a half times more likely to start CGM compared with Black children and twice as likely to start CGM compared with Hispanic children. There was a disparity even when broken down by types of insurance – commercial or government. These researchers say social determinants including structural racism, are likely playing a role in disparities in care and outcomes https://www.healio.com/news/endocrinology/20210719/black-children-less-likely-to-start-continue-cgm-after-type-1-diabetes-diagnosis XX Very large survey of women shows that half of those with type 1 or type 2 diabetes are not getting pre-pregnancy counseling. This study included more than 100-thousand women. Right now guidelines from many groups including the CDC and American Diabetes Association recommend providers offer women with diabetes health counseling before pregnancy to cut down on the increased maternal and infant risk associated with both conditions. These researchers hope to develop better tools for women & their doctors. https://publichealth.berkeley.edu/news-media/research-highlights/women-with-diabetes-and-hypertension-dont-receive-pre-pregnancy-counseling/ XX Big increase for time in range when kids use hybrid closed loop systems. We’ve heard about a lot of improvement, but in this study, the percentage of kids and teens with t1d spending at least 70% time in range… more than doubled after 3 months of using Tandem’s Control IQ system. This was a study of about 200 kids, median age was 14, and it was a real world study – where the kids went about their lives, not in a clinical setting, and the researchers pulled the data electronically. Interestingly, sleep mode use increased through 6 months, while the exercise mode was used less over time. Kids with an A1C over 9 saw the most improvement. Those with an A1C under 7 didn’t see much of a change. XX Dexcom gets FDA clearance for real time APIs.. what does that mean? Third party companies like Fitbit or Sugarmate which have long integrated Dexcom data have been doing so on a bit of a delay. Now they can do so in real time. API stands for Application Programming Interface, which is a software intermediary that allows two applications to talk to each other. Dexcom’s Partner Web APIs will allow users to view all of their diabetes care data in one place to enable in-the-moment feedback and adjustments, the company said in the announcement. https://www.mobihealthnews.com/news/dexcom-gets-fda-nod-its-new-api-integration XX Cool new exhibit at Banting House – recent guests of the podcast and museum celebrating the birthplace of insulin. They’re set to open up again this week – the first time since March 2020 – and there’s a new computer generated exhibit. It does work outside.. In the square where Dr. Banting’s statue stands. Giving visitors a virtual glimpse at the life and work of the man credited for the discovery of insulin. If you haven’t visited – it’s in Canada – or seen the museum, I highly recommend a spin around the website, we’ll link it up. XX Summer Olympics are kicking off and by now you’ve probably heard that American trampoline gymnast Charlotte Drury was just recently diagnosed. She found out she had type 1 weeks before the 2021 Olympic qualifying trials, she revealed on Instagram last week. she and her coach pressed on and she basically got back into things within three weeks. She posted this photo of herself wearing the Dexcom. Drury is the first American woman to win a gold medal in trampoline at a World Cup That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – I’ll share my conversation with Gold Medal Olympian Gary Hall Jr – when he was diagnosed in 1999 he was told to give up swimming. He didn’t and he talks about why.. and how he overcame what was conventional wisdom for athletes at the time. This week’s show is the story of Jack Tierney, diagnosed in 1959 with type 1 he’s 81 and he says he’s never felt better. Thanks and I’ll see you soon
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"I've never felt better in my life and I'm 81 years old" - meet Jack Tierney
07/20/2021
"I've never felt better in my life and I'm 81 years old" - meet Jack Tierney
Jack Tierney has lived with type 1 for more than 60 years. Not surprising, he was first misdiagnosed with type 2 and lived with that diagnosis for almost two years. He shares the story of finally getting the right diagnosis, living well with T1D before home blood sugar meters or fast acting insulins and why he just last year switched to a pump. Stacey talks to Jack and his son Jamie. In Tell Me Something Good – boy it was great to get back out to an actual in person conference. Shout out to not just FFL but to my local Charlotte community as well. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Previous episodes with people who've lived with type 1 for more than 50 years: ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription below: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first pre mixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week Jack Tierney is 81 years old and was diagnosed with diabetes more than 60 years ago. He had classic symptoms but remembers being shocked to hear the news. Jack Tierney 0:38 And he told me I was a diabetic and I said to him what's that I had never heard the word or knew nothing about it. And he told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two because this was January of 1960 Stacey Simms 1:00 Jack was mis diagnosed with Type two for almost two years. He shares the story of finally getting the right diagnosis living well with T1Dbefore home blood sugar meters or fast acting insolence and why he just last year, switch to a pump in Tell me something good boy, it was great to get back out to an actual in person diabetes conference, shout out not just to friends for life, but to my local Charlotte community as well. 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. Okay, so glad to have you here we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed 14 and a half years ago, just before he turned to my husband lives with type two diabetes. I have diabetes, but I have a background in broadcasting. And that is how you get the podcast. I got an email a couple of weeks ago from Jack Tierney, who you'll hear from today. And he said check out the 12 minute YouTube video that my son and La filmmaker has created for me, it's called an 81 year olds 62 year journey with type 1 diabetes. Well, that caught my attention. I've talked to quite a few people over the years who have lived a very long time with type one, it really is incredible to think about how they made it work without the things that we consider now like the very very basics right home blood sugar meters, and a one c test fast acting insulins, Jack and his son Jamie have a great story. And I will link up that video that started all of this in the show notes you can always go to Diabetes connections.com. If you're listening on a podcast player, you know like apple or Spotify or Pandora, sometimes the show notes are a little wonky. And the links don't work, just head over to the episode homepage. And it also has a transcription. If you follow me on social, you know that I went to the friends for life conference recently the first in person conference for me since March of 2020. I'm going to talk about that after the interview. But I wanted to say a quick Welcome to anybody new who is listening who found me there who I met at that conference, there were so many new people, it was great to be able to say hi and have some hugs and meet your kids. So I'll talk about that a little bit. And I'll get to Jack's story in just a moment. But first Diabetes Connections is brought to you by Dario Health. And, you know, we first noticed Dario a couple of years ago at a conference and very thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports based on your activity. Find out more go to my daario.com forward slash diabetes dash connections. Jack and Jamie, thank you so much for joining me. I am so interested to hear this story. Thanks for making time for me today. Oh, you're welcome. We will hear Jack story and I can't wait to hear you in your own words. But Jimmy, let me just start with you. What made you create that video, Jamie Tierney 4:19 my dad said he was working on some scripts about his thoughts on diabetes and living with it for over 60 years. He wrote a number of different stories about it and wanted to record that on camera. And so we started doing that and we have all seven or eight sorry, eight tapes, I believe, of doing that. But what I was most interested in is his personal story, his life story because once we got started there was there's a lot of things that I didn't know about his story and about about diabetes in general. And so that's what got me interested and then I wanted to follow up with with his doctor and with his with his brother to get multiple sides and also my mom I'm here to get her side of it. It's one of those things that started off as one thing and changed a little bit as we went. Stacey Simms 5:06 All right. So Jack, you have lived 62 years with type one. Can you talk about your diagnosis? Because not too surprisingly, you weren't diagnosed correctly right away, Jack Tierney 5:16 right? Yeah. In the first tape that I did with Jamie, I did talk about what happened with me, I actually came down with type one in 1959. At the time, my mother, who was only 43, had a brain tumor, and I was under a lot of stress, and I was attending college. In fact, when I was home with her after she had to have had a tumor removed, I did get the flu, like so many type ones, it just exacerbated or caused type 1 diabetes, because I weighed 100, I'm six foot four at the time, a weighed 150 pounds, I was down to 125 and peeing incessantly, like everyone who gets type one does. And so I returned to college. What happened was, I was just deteriorating so fast. I was in a small town in Indiana attending college. So I went to the local general practitioner, and he did some tests and told me my blood sugar was over 500 and then needed to be 80 to 120. And he told me, I was a diabetic. And I said to him, what's that I had never heard the word or knew nothing about it. He told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two, because this was January of 1960. And he was a general practitioner in a very small town. But what he did do was consult with the dietician at the college I was attending, and he treated me I now know pretty much like a type two diabetic because he put me on 1000 calorie diet, your I am weighing 125 and surviving on any did give me a pill, I believe it was called diag and Ace, I really survived that way for about 18 months, just living on 1000 calorie diet and and I was in a really rigorous academic program too. But then as my brother indicates on the video, I came home and he was really worried about me. And luckily I had transferred to the University of Dayton and I was, I got in touch with a wonderful Doctor Who put me on insulin shots. And that made all the difference in the world. You know, I did get back to weighing about 150 in about six months, and you know, took the taking shots. In fact, what I say on the video, when I added it all up, I've given myself probably 42,000 shots over the years, by the way, preparing to do the tapes, Jamie because whenever Jamie does film project, he does extensive background for it. And he gave me a book titled breakthrough about the discovery of insulin by Dr. Frederick Banting. And in fact, when I, I'm going to start to cry, because I read that book in two days. Because it just reminded me of how many kids died before Dr. BAMMY who's one of the greatest human beings that ever lived, discovered him. And it just, you know, I just brought back so much to me reading that book. But the man was a absolute saint for all that he did. I'm sorry for crying. But every time I think of that, man, I just think all of us were type ones are eternally grateful to him back, he's got to have one of the highest places and heaven. Stacey Simms 9:10 It is incredible, you know, as we're marking 100 years of the discovery of insulin to think that someone such as yourself was diagnosed at a time really not that long after, at a time when many doctors and they still mess this up. But you didn't know the differences between the types. I'm curious, you know, I've heard other people talk about being diagnosed in the 40s and 50s. By medical professionals who kind of, you know, gave them really dire diagnosis or dire outcomes or would say, you know, you're really not gonna live that long. Were you I hear the emotion in your voice. Were you told things like that back then? No, Jack Tierney 9:47 you know, that's, that's very interesting, because I remember Okay, for example, one of the doctors that I know just casually here in San Diego is Dr. Steve Adelman. And he too, is a type one diabetic. And I remember in paper he had written, he mentioned the fact that he was told that that he had he would live no more than 15 years. And he was diagnosed as a young adolescent. So I know that many people who were afflicted with type one word told, for example, one of my doctors is put me in touch with a two or three other type one diabetics here in San Diego who've had it for 60 years. And one of the women that I talked to she's now 70 and she was diagnosed at age 13. And again, the doctors told her that she would live no more than 15 years. Stacey Simms 10:50 How did you then go forward? I mean, it sounds like you kind of alluded to it, you know, did the shots it wasn't that difficult, you know, again, the weight back but this was at a time before blood sugar meters. This was at a time where I assume if you were checking it wasn't very accurate. What were you doing? Right back to Jack answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen . And our endo always told us if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon, it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more, go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvoke glucagon.com slash risk. Now back to Jack answering my question about how he stayed healthy. Jack Tierney 12:06 Well, I'll tell you one of the tapes that I did with Jamie was on exercise, I quickly realized how important exercise was I just felt intuitively that I would utilize insulin more effectively via exercise. And so as I mentioned on the tape, one day when I was 23 years old, I played 50 holes of golf carrying my own bag. And I used to routinely play basketball because I'm six foot four, three to four hours, sometimes even five or six at a time if I had the opportunity away from my academic studies. So I just found that exercise was so important. And you know, I've been as somewhat of an exercise buff all my life. In fact, one reason why I contacted Yahoo and diabetics the connections because on a news release here in San Diego, I saw where Eric Tozer was running eight different marathons on every continent in the US over a short period of time. Yeah. And he's a type one diabetic. So, in fact, on one of the tapes, I say, whenever I get when two people like Eric, I really follow their story, because it's motivational to me to maintain the exercise level that I like to Stacey Simms 13:37 let me jump over to Jamie for a minute, as you're hearing your dad talk about, you know, playing 50 holes, and golf and basketball. Growing up. Was he super active? Was this a family thing? Did he make you all get involved? Or was this his thing? Jamie Tierney 13:50 Oh, no, no, we I've been playing golf and my dad, before I can remember, I was about two years old. And, you know, I was thinking because the US Open was fishing yesterday. And he used to wake up at three in the morning and drive down there and get us a place in line to go play and then then come home and wake me up and take me back there. And then we play golf and maybe come back and do yard work stuff like that. So growing up, I never thought it was any different than anybody else's dad probably more probably quite a bit more active than most other dads I knew around. Stacey Simms 14:25 Was diabetes kind of in the background, then do you remember as a kid, or you know, as a young adult at all? I'm trying to envision what it would be like because now you know with insulin pumps, we see gems, we see it more. But I'm curious, Jamie, from your perspective, what it was like to grow up with a dad with the type plan? Jamie Tierney 14:42 Well, I don't always see him do the shots. And you know, I don't remember ever asking him what those were about that I just remember. I was near what it was that he had to take medicine he had to do it every single day and had to do with a needle which isn't fun for anybody. I remember a few times, you know when when we would We are playing golf specifically with hot that he bring like a candy bar with him in case he would start feeling a little woozy he would, you know, he would, he would eat something to kind of revive themselves from there was a couple times I remember when it got a little bit scarier than that where he needed, you know, he needed some assistance needed to get back to the clubhouse quickly to get back to normal. So I was always aware of that. But again, you know, I didn't really know that much about the disease itself and how it works. Other than if you've ever looked a little bit off, it needs to get some, some carbohydrates and and quickly, Stacey Simms 15:36 Jack, I would imagine and I'm just thinking from my own experience, as a parent and as a daughter are our parents generally don't want us taking care of them. And we don't want our kids taking care of us when we become parents. But type 1 diabetes is kind of always there. Were you consciously trying to think, okay, I don't want Jamie to have this responsibility. I've got this, did that kind of stuff go through your mind? Jack Tierney 15:58 No, you know, I just felt you know, it's an affliction. Everybody has ailments and afflictions. And, you know, once I realize how valuable and importance for my health, taking shots where it just became second nature to me, and I just felt so much better. But I just told my wife last night, since I've been on the T slim X to in last eight months, I've never felt better in my life, and I'm 81 years old. So I just am seeing the value of the pump, you know, and like Dr. McCallum says on the tape, he was a little surprised that I would take to it but you know, I always respect him so much. He just told me that this T slim is really something and I'm just so thankful I took the leap eight months ago and did it because I feel tremendous. Having done I do feel better now that I'm on the pump than I ever did just taking shots. Stacey Simms 17:11 Now, what led you to do this? It was was it a conversation with your endocrinologist? Jack Tierney 17:16 Yes. And and just also, he told me that this pump was exceptional in his point of view. In fact, Stacy, I'll say this to you, I just and so long story but I did talk with Dr. Aaron Kowalski today the president of jdrf in New York, and he told me he's using the T slim the Tandem t slim max to also so that made me feel really good. That maybe this is definitely it just reinforced by decision as being a very good one. Well hearing about this from Dr. Kowalski. Well, Stacey Simms 17:56 I know Dr. Kowalski, but we chose it to and I gotta tell you, I absolutely love it for my son. It's just the software. It's great. So you were already then using a Dexcom CGM. Because if you're listening and not familiar, the Tandem system works with the Dexcom. Right. Are you using that together? And had you been using a CGM for a while? Jack Tierney 18:16 Yes, in fact, that's a funny story. You're gonna love this story. What happened was about three years ago, I went to see Dr. McCallum and I wanted to get on a continuous glucose monitor. Because, you know, I'd seen it advertised and it just sounded like the cat's meow. So I'm waiting to see him. And there's a young man waiting to see another endocrinologist. And he says, Dr. Tierney, and I said what and what it was, it was a gentleman, a young man that whose first name is Brandon. And I saw Brandon when he was nine years old to help him get ready for a test to get into a highly academic private school here in San Diego. And he at the time, he told me he was a type one diabetic. And so what happened was he was using the Libre and went over all of the advantages to the Libre before I saw Dr. McCallum, so I walked into Dr. McCallum's office, and I said, Well, Dr. McCallum I think I've made a decision on the continuous glucose monitor that I should be using because I one of my former students told me the benefits up Wow, so I went on the Libre. But then, in fact, at the time that I went on the Libre, the Dexcom, six wasn't available, right. And so it just sounded like the best one for me at the time. But then, of course, eight months ago, when I made the decision to go on the T slim. They told me it was worked in concert with the Dexcom six and that's why of course I switch to that saying it's great to Stacey Simms 19:58 Yeah, it's it's Wonderful to have these choices. You know, I was gonna ask you, right, I was gonna kind of ask you to take us through the process of going from, you know, no home blood sugar meter to kind of you know what it was like in the 80s. And then, you know, the different insolence, but you like rocketed ahead, and now you're on a hybrid closed loop system. So you've right, it's Jack Tierney 20:20 so sad, you know, there was nothing available. Thinking back, I did a lot of research before I did the eight tapes that Jamie debts. And one of the things that I learned and I had read a little bit about that, because I read a lot about that diabetic compilations and controls study that was done in 1980s and early 1990s, with type ones. And you know, in fact, they abbreviated the study early because it showed that tight control of type one of your blood sugar is imperative. In fact, I think I in my research for those...
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In the News... Smart Insulin, Pixar Features Diabetes, T1D up K2 and more!
07/16/2021
In the News... Smart Insulin, Pixar Features Diabetes, T1D up K2 and more!
It's In the News - the only weekly diabetes newscast! This week's headlines include: Lawsuit against insulin makers moves ahead Mixed news for Teplizumab Peep the pump at Pixar Antacids to help type 2? #T1D up K2 Join Stacey live on Facebook to watch each Wednesday at 4:30pm EDT! ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcript Below: Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more when you have the time. XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know… Stuff” XX The top story this week.. one step forward, one step back on a lawsuit involving all three insulin makers. A federal judge dropped anti-trust claims – but the case will move forward under federal racketeering laws. That means Eli Lilly, Novo Nordisk and Sanofi face organized crime charges. The Judge says the plaintiffs plausibly alleged schemes of unlawful bribery and mail and wire fraud. The other defendants in this case are pharmacy benefit managers Express Scripts, CVS Health, and UnitedHealth. Lilly, Novo Nordisk, and Sanofi are accused in the lawsuit of inflating the official list price of insulin while the actual prices negotiated by pharmacy benefit managers remained flat due to massive rebates from drug companies. XX In a separate development, Lilly announced they have spent one billion dollars on Protomer Technologies – a company who’s been working on what they call smart insulin. These proteins that can sense concentrations of specific molecules and adjust to create variable doses. This pipeline includes an insulin product that adjusts to different glucose levels in diabetic patients. In 2020 Lilly led an investment round that gave them 14% of the company. This deal gives them the rest. We’ve heard about glucose-responsive insulin for a while now, JDRF has funded a lot of the research. A spokesperson says this significant milestone brings the promise of the game changing technology one step closer to the clinic. XX Mixed news for Provention, the makers of teplizumab. The US FDA says no to the drug shown to delay type 1 diabetes in those most at risk. It made it through an FDA advisory panel earlier this year, but the full FDA issued what’s called a Complete Response Letter or CRL which means they’ve completed the review and won’t approve in its current form. However, earlier this week, the company got good news from the UK. Teplizumab was awarded an Innovation Passport – a new designation that is meant to fast track investigational medicines through the regulatory process there. https://finance.yahoo.com/news/teplizumab-awarded-innovation-passport-united-110000773.html XX An Australian study shows good outcomes with closed loop therapy for older adults with long time type 1. This study looked at 30 healthy adults aged 60 and older who’d previously used an insulin pump. They used the Medtronic 670G either in manual or auto mode for four months at a time then switched to the other mode for another 4 months. They all spent more time in range when in the closed loop stage.. and biggest benefit was seen overnight. Less hypoglycemia was a big benefit for this group. These researchers say they want people to know that older age is not a barrier to closed-loop therapy and closed-loop has important clinical benefits Bit of an editorial here: I would not call the 670G or really any current commercial pump offering a closed loop. To me, if you’re still bolusing for meals, that’s a hybrid closed loop or partial loop, but potato potahto perhaps. https://www.healio.com/news/endocrinology/20210706/closedloop-system-improves-cgm-metrics-for-older-adults-with-type-1-diabetes XX Pixar released the teaser for it’s next movie.. Turning Red and eagle eyed members of the DOC spotted what looks like a CGM and a purple insulin pump – maybe an older model Medtronic? I heard from a source at Pixar with type 1 who says this was absolutely on purpose It is definitely intentional to include better representation of the real world, whether it is wheelchair users, crutches, pumps/cgms, hearing aids, and more… This initiative is largely credited to our characters art and crowds departments. I’m working with the Pixar PR folks and hope to have more info and an interview as the movie is closer to release. XX A class of drugs widely used to treat heartburn and stomach ulcers, improve blood sugar in patients with diabetes when added to their usual treatment. These drugs are known as proton pump inhibitors – they include Prilosec and omeprazole. They suppress acid and affect certain hormones that are important in glucose regulation. They did not prevent diabetes.. but these researchers say if somebody is already on a PPI and they are doing well, it might also be helpful for their diabetes. Those with higher A1Cs benefited the most. https://www.webmd.com/diabetes/news/20210702/antacids-aid-blood-sugar-control-in-people-with-diabetes XX More to come, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. They cover everything from accidental discoveries to famous names in science to old myths hand washing to and even a horse poop crisis in New York City – luckily averted. And this all actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts.. Back to the news… XX A new attempt to climb K2 – the second highest mountain on earth - something accomplished by only one person with type 1 diabetes before. Right now, Jerry Gore – diagnosed as an adult - is acclimating at base camp. Gore is 60 years old and has been climbing for 40 years. He hopes to raise money for his charity, Action4Diabetes, which provides healthcare and support to disadvantaged young people with Type 1 diabetes in South East Asia. https://www.justgiving.com/fundraising/jerry-gorek2?experiments=b2c_059_donate_to_yourself_v3&successType=StaticDonateButtonClick?utm_source=twitter&utm_medium=socpledgemobile&utm_content=jerry-gorek2?experiments=b2c_059_donate_to_yourself_v3&successType=StaticDonateButtonClick&utm_campaign=post-pledge-mobile&utm_term=MdnpGx3vR XX Congrats to Sebastien Sasseville who just biked across Canada in 15 days. We told you about this trip when he kicked off two weeks ago.. I don’t think anyone expected the weather to do what it did – Canada broke several heat records – and there were storms and wind. Sasseville lives with type 1, he did this to raise awareness for access to technology. He’s climbed Everest and has completed several grueling extreme races & posted on his Instagram: “This was the hardest thing I have ever done, and could not have done it without the crew. They kept me safe and alive, I will be forever grateful. We did it boys!!! Chase life experiences and create memories with people you love. That is my best advice for a fulfilled life.” Congratulations to Sebastien and crew! XX That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – a conversation with just a great guy.. he’s 81 and he’s lived with type 1 for more than 62 years. Thanks and I’ll see you soon
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The Baby-Sitters Club & Type 1 Diabetes in Media
07/12/2021
The Baby-Sitters Club & Type 1 Diabetes in Media
The Baby-Sitters Club comes to Netflix! The beloved series features a character who lives with type 1 diabetes. How did the show do portraying life for a 7th grader with T1D? We talk to New York Times Bestselling author and winner of the National Book Award Robin Benway. Robin loved the books as a child and was diagnosed with type 1 as an adult. Also this week, Mike Suarez turned his son’s story into an adorable picture book called In Tell Me Something Good – she had a huge goal for the JDRF rides this year – of course so much had to be cancelled this year but her story took a wonderful turn.. on and off the bike. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first pre mixed autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, it's all about books and a TV show that's based on books. We're talking about the Baby-Sitters Club with a New York Times bestselling author who loved the series as a child and was diagnosed with type one as an adult. Robin Benway 0:43 Oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was thinking about Stacey when I did start to watch it. I thought it was nearly perfect. Stacey Simms 0:54 Robin Benway is the winner of the National Book Award when we talk about Stacey and the babies sitters club, what we liked what we didn't, and about diabetes in media. Plus a dad turns his toddler story into an adorable picture book about type one. in Tell me something good. She had a huge goal for the JDRF rides this year, of course, so much had to be cancelled and changed. But this woman's story took a wonderful turn on and off the bike. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, gosh, ages ago now he was almost two and in December it will be 14 years. Yeah, he's 15 and a half 15. And more than that, I don't even know anymore. My husband lives with type two diabetes. I do not have diabetes, but I have a background in broadcasting and that is how you get the podcast which we've been doing now. for more than five years, and I have been wanting to talk about the Baby-Sitters Club for a long time, I mean, we have talked about it because many guests over the years have said that it was very influential to them, either. They read it and really were touched by Stacey's story, the character who lives with type one, or somebody else read it and diagnose them because of it. That happened at least once to one of my guests. It's really incredible to think about these books, and the impact they've had on our community. So when I saw column in Elle magazine recently, about the Netflix adaptation, I really wanted to talk to Robin Benway, the author, I knew she'd be fun to talk to just by her writing voice in the magazine, and she really was and Robin also had some unique insight about the books and about the adaptation, and I was really excited to talk to her. We also talked about diabetes in other media, you know, I think a lot of us cringe when we know there's going to be a depiction of diabetes and a show or they mentioned insulin and we Oh, we know what's coming. So it was fun to talk to Robin about that. And to kind of spotlight some good stuff that's actually out there. All right, I'm going to talk about my reaction in more depth to Baby-Sitters Club in a little bit of a review, but I'm going to do that later on. Because this is a longer episode. We've got two interviews, we've got Robin. And I also spoke to a dad who wrote a picture book rhyming kids book for about his little boy, and it's called year one with type one, and that is with Mike Suarez. So that's coming up in just a bit but first, diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop was really impressed at how much they get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required there. Beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes, Connections comm and click on the One Drop logo. My guest this week is a National Book Award winner and a New York Times best selling author. She wrote a column about the Baby-Sitters Club and her reaction to it in Elle magazine. That's what caught my eye. I reached out and said, Would you talk to us but to come on the show? She said sure. And we had a great conversation. Now she grew up with a father who lived with Type One Diabetes, but she herself was not diagnosed until she was an adult. So her perspective on the Baby-Sitters Club, which she loved, as you'll hear as a kid was very different because she wasn't relating to the type one aspect about it right away. I'm also curious to know what you thought of the Baby-Sitters Club. I'm going to be putting more about this in the Facebook group. We've talked about it a little bit, but we'll put more posts in there and get your take. And as I said earlier, I'm going to put a little bit more of my review, although you'll you'll hear much of it in the interview. But a little bit more later on. Here is my talk with Robin Benway. Robin, thank you so much for jumping on to talk about this. I really appreciate it. It's I'm looking forward to talking with you. Yeah, same here. Thank you so much for having me. All right before we jump into the Baby-Sitters Club, and I have a lot to talk about with that. Let me ask you just the basics. You were diagnosed as a young adult, right you were in your in your mid 20s? Robin Benway 5:28 Yes, I was 26 it was July of 2003. I was diagnosed I was diagnosed with celiac disease at the same time I was having really low iron problems I was having anemia so they started doing a lot of bloodwork just to find out what was going on and started noticing that I had elevated blood sugar levels. And my father, who was my biological father was also a type one diabetic. So once they saw those blood sugar levels being elevated, they started to put things together pretty quickly. And so I in a, you know, a very strange way felt very lucky that I was diagnosed that way that it didn't progress to the point where I had to be hospitalized or my blood sugar's were, you know, four or five 600 or something like that, that I was diagnosed sort of accidentally and was able to catch it pretty early and could start, you know, meeting with an endocrinologist and started taking insulin pretty soon after that. So there was no mistaking at that age, oh, maybe it's type two, maybe it's something else because of your father, they pretty much went right there. At first, they were like, maybe it's type two. There was a lot of I think, you know, this was 17 years ago. So I think now, the way that people are diagnosing type one and people in their 20s and 30s is very different than it was 17 years ago. I think that was when people were just starting to see that, at least based on my experience and the responses that I was getting from doctors at the time. You know, I had grown up knowing that my dad was diabetic, but in our family, we had always sort of been under the impression that once you hit 12 or 13 years old, you're sort of out of the woods of that, you know, I think a lot of they used to call juvenile demise you know, because they were diagnosis of young. So I think it was a real shock because I had always thought, okay, I'm out of the woods. I'm fine. And that wasn't the case. But they definitely did think it was type two. They started me on oral medications at first Metformin, but nothing worked. And I remember I still remember the first time I took insulin, it was just like, oh, that was the problem. You know, that's what I need because my blood sugar's just came down to right where they should be. So, you know, it was a little disheartening knowing that I was going to have to go on insulin, but at the same time, that relief of knowing that now here's the drug that works was it balanced it out? Stacey Simms 7:36 Do you remember I've been told this by other adults that I've talked to that what that first dose of insulin feels like, Do you remember that? Robin Benway 7:44 I do. Remember, I was staying at my mom's house. I was living alone at the time and I thought I don't want to be alone when I take my first dose of insulin just in case. And I remember it dropped. My blood sugar's a little lower. They were like maybe in the mid 60s, and I just remember, I didn't feel shaky but I just remember feeling less. It's that feeling of a sugar rush basically, you know when your blood sugars are high I for me personally, I definitely feel a little agitated, a little edgy, you know a little bit more, I don't know Piper's the word but just a little fuzzier. And I just remember that feeling going away. And I remember also being so terrified of like having to give myself an injection like having to give myself a shot. And I was incredibly amazed at how easy it was and how painless it was. I had always imagined that it would just be a torturous experience, you know, mostly because your experience with injections is like vaccinations or inoculations. You know, it's Earth flu shot. It's a very different experience. Give yourself a shot of insulin. And I remember feeling that relief also of Oh, I can do this. Okay, this is something that I can do. Wow. Yeah. So Stacey Simms 8:50 the article that I'd mentioned, you start out by talking about this high spot in your career, the National Book Awards Gala and then the reality of being an adult with type one, which is go to the bathroom, I get up your formal gown, you know, giving an injection. And, you know, certainly a great way to start the article. But I'm curious, do you share your diabetes experiences with your friends and family? I mean, not everybody has to be giving themselves injections at the table. Right? I know. I'm sure you're not hiding things. I don't mean to imply that. Oh, as a mom, that was the first thing I thought of was, oh, my goodness in the bathroom. She okay. Yeah. Robin Benway 9:29 You know, I obviously all of my friends and family know about it. I'm not someone who would ever conceal that part of me. It's not something that I ever feel ashamed of, or feel like I need to keep secret. That's certainly not it at all. I think. For me, it's more about I'm very conscientious of other people's reactions to blood and to syringes or needles, and I just don't want to ever make someone I definitely have known people and I've heard of people who just give themselves an injection right at the table, you know, or will check their blood sugar under the table. And for me, I'm just not comfortable. That just in terms of making other people uncomfortable, but also sometimes things go wrong, you know, like, sometimes, you know, there's a little bit more blood than you thought there would be or you hit a blood vessel when you're injecting yourself with insulin. And, you know, sometimes it's just easier to be in, even if it's a public restroom, you know, it's still a confined space. And sometimes just the privacy is sorted out is something that I prefer but in terms of being open, I definitely I talk about it. I do a lot of school visits with my job, you know, writing for young adults and young people, I do a lot of school visits. And I always talk about how I was diagnosed and how that changed the trajectory of my life. And I always say to kids, who here knows somebody with diabetes, and almost every kid raises their hand you know, whether it's type one or type two, it doesn't really matter to me, I just, I know that they can make a connection with what I'm saying and relate it to either themselves or someone that they love in their lives. No doubt. Stacey Simms 10:53 Yeah, I think that's to is the difference between my my personal experience of type 1 diabetes is my 15 year old who has made a career out Have trying to gross out his friends. Yeah, no, since the third grade watch this. Yeah, slightly different experience than a grown woman in Robin Benway 11:09 that dress. You know? It's expensive. You just really don't want to get anything on this. Stacey Simms 11:15 So let's talk about the Baby-Sitters Club. Now I'm a little bit older so my guilty reading pleasure as a kid was worse sweet Valley High then Babysitter's Club, also say, okay, okay. But were you a fan of this as a kid, this was something that you read and you look forward to. Robin Benway 11:32 Oh, I cannot even describe to you like how much I love the Baby-Sitters Club. Like, I can just remember going to my local bookstore, you know, the Walden books that was in the mall at the time when there were still Walden books in malls and scanning the shelf and just looking for the new one and either being so excited when there was a new one or so disappointed when, you know, they came out every month and you know, on day 30 I'd be like, Where's the next one you know, and sharing with your friends or your Got the new super special, so then they would loan it to you and super specials were bad. But yes, I mean, just when I think about the Baby-Sitters Club, because I've also talked a lot about, you know, what is sort of my formative reading now as a writer, like, what did I read as a child and a young adult that sort of made me a writer? I think the two things about the Baby-Sitters Club is that they were so funny. And I think I learned how to write humor and really good dialogue from those books. I think you can't really teach how to write humor or write something funny, but I think if you can see it, you can see how either rapid fire dialogue or really smart responses or interrupting each other like, that was formative for me as a writer was seeing how they did that. And then also just as like a 11 1213 year old girl, you know, that is where, and I'm sure a lot of women and girls have had this experience, your friendships just kind of implode. And nobody really knows why. But suddenly, your best friend in sixth grade is your biggest enemy in seventh grade. And the factions are changing all the time and who's friends with who and who's not friends with who and who Did what to whom it's traumatic, it's a really difficult experience. It's a big part of growing up, but it's still difficult. And the thing with the Baby-Sitters Club was that at the end of the book, they were always friends. So you could see the sort of regeneration of friendship again and again and again. And for me, it was very comforting. You know, when sort of my female friendships were in turmoil, it was so lovely to see these girls work through things and stay friends in the end. So those were, I think the two things that kept me coming back to the book, but a great way to look at it. Stacey Simms 13:29 Yeah, but you as a reader, your type one experience was with your dad. So I imagined Stacey McGill, the character in the book who has type one wasn't somebody who could really relate to that wasn't what you were reading the books at the Robin Benway 13:42 time? Absolutely not. Absolutely not. You know, I actually I shied away from Stacey as a reader. You know, I loved I moved to New York when I was 18 years old. I've always wanted to live in New York. So reading her as a 12 year old I was like, Oh, that's she's a sophisticated city girl. You know, that's how they always portrayed her. She's From New York City, but that was my favorite part of her but there were books where either she was just diagnosed or I think there's a book later in the series where she was hospitalized. And I had a hard time reading those just because at the time my dad's health he had been a diabetic for 30 years at that point, so his health had gone up and down, you know, just the nature of the disease and the nature of treatment at the time as well. It wasn't as advanced as what we have now. So you know, it was scary to see my dad go through that and I, Baby-Sitters Club was my safe place. You know, that was my fun, safe, circular path of Stony Brook Connecticut. I didn't want a hospital or an insulin shot coming into it. So I don't say I didn't like Stacey as a character. I love Stacey as a character but in terms of what she went through, I just I really shied away from that. That wasn't I was much more a Claudia dawn girl. So yeah. Stacey Simms 14:54 How did you approach the Netflix series you've lived with type one now for a while. We all know that they never get it right in In media, I really looked looked at the show. I look very much forward with a lot of trepidation. I was almost afraid to watch it. What was your reaction? Robin Benway 15:09 I mean, I literally had an alert set on Netflix to remind me that the Baby-Sitters Club will be on Friday, July 3, and then I got the notification. I was so excited for it just because I had loved the books. And you know, I don't know any of the creators personally, but I was familiar with their work and their backgrounds. And I had read a lot of articles by that point about how they had approached the material and I just had a really good feeling about it. You know, I just thought that this is possibly in really good hands. And honestly, I wasn't even thinking about it in terms of Stacey and diabetes. I was thinking about it as oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was even thinking about Stacey, so when I did start to watch it. I mean, I thought it was nearly perfect. I thought that they kept the spirit. I love that they kept the girls young, you do feel like you're watching 12 and 13 year old girls, b 12 and 13 year old girls, you know, and all of the struggles that go into that, but all of their I don't say immaturity, but just that feeling of they're still young, they're still figuring things out. They're not 17 years old in high school, you know, they're still little girls and I thought that was really important what the books were and to the show, and I just thought the way they modernized the material was perfect. You know, they talk about Claudius grandmother being in bands and our you know, Claudia is Japanese American and talk about her grandmother being advanced in our when she was young. And you know, at one point Marianne is babysitting for a kid who's transgender and that would have never been in the past 30 years ago, and I just thought they did a beautiful job of modernizing not only the characters, but the storylines while still staying true to what the spirit of the books was. They did Stacey Simms 16:45 a nice job with that too. And they did this many times where they would put something in like that, you know, the child who was transgender, but the storyline wasn't so much about that child. It was the babysitter character's reaction to it and reflection of it....
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Dexcom CEO Kevin Sayer Answers Your Questions
07/06/2021
Dexcom CEO Kevin Sayer Answers Your Questions
What do we know about the upcoming Dexcom G7? Find out in this conversation with company CEO Kevin Sayer. As usual we have a long list of questions from you covering everything from adhesives to watches to more. Sayer shares details about how they’re preparing for the G7 rollout (it has not yet been submitted to the FDA), as well as issues with Medicare, integration with their current pump partners and when arms will become an approved wear site for US customers. 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 below Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health: manage your blood glucose levels, increase your possibilities, by Gvoke HypoPen: the first premixed autoinjector for very low blood sugar, and by Dexcom: help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system. Announcer 0:23 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:29 This week, a Dexcom update from the company's CEO. As usual, we have a long list of questions from you, covering everything from adhesives to watches to more about the upcoming G7. Kevin Sayer 0:41 And the goal is to simplify CGM for everybody across the board. What I often say is everything you love about G6, you'll love more about G7. The size is so small, you don't really recognize it's on your body. It's really a great profile, a little bigger than a nickel. Stacey Simms 0:56 CEO Kevin Sayer will also share details about how they're preparing for the G7 rollout once it's approved, as well as details about Medicare and use but their pump partners. This podcast is not intended as medical advice. If you have those kinds of questions, contact your health care provider. Welcome to another week of the show, always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son Benny was diagnosed back in 2006, just before he turned two. He is now 16 and a half. My husband lives with Type 2 Diabetes. I do not have diabetes, but I have a background in broadcasting. And that is how you get the podcast. My usual disclaimer, whenever we have them on, Dexcom is a sponsor of this show, you will hear their commercial later on. It's because we love the products. But when we have people from Dexcom on as guests to give you information, they don't tell me what to ask or what to say outside of that commercial. And I just want to take a minute to say, I very much appreciate Kevin Sayer and others from Dexcom being so accessible over the years, you know, they don't always answer my questions, but at least they come on and address them and listen to them. There are a lot of companies that are very reluctant to even do that, who won't come on the show. And that's really unfortunate because you, as you listen, and you know the diabetes community overall, I'm very much entitled to speak to these people and to these companies. So I will keep pushing nicely, but I'll keep pushing, I promise. Quick heads up, there will likely be no longer format episode like this one next week. I'm still gonna do the "In the News" episodes that I have added live on Facebook and then turning them into podcast episodes. But I am, as you listen, if you're listening as this episode is going live, I'm at Friends for Life. I'm at that conference. They're having it again. I'm so excited. It's the first diabetes conference I have attended since February, no, since the first week of March of 2020. I went to a JDRF conference in Wilmington, just as COVID was beginning, it was very weird. If you did anything, any kind of public event in March of 2020, you remember that. But I'm back, they're back, I'm at Friends for Life. And I really don't want to rush out an episode. But if anything exciting or you know, breaking news happens or I'm able to record something and put it out, I will. But just a heads up, likely no episode next week. Alright, and this week, not much of an introduction needed. Kevin Sayer is the CEO of Dexcom. And this interview focuses on some of what came out of the recent ADA scientific sessions and ATTD conferences. But mostly I share your concerns and your questions. We've covered a lot of these issues before, I don't ask a lot of follow up about things that, in my opinion, you can easily Google up. As usual, I had limited time with Sayer, who was doing back-to-back interviews. So if you have a specific question or if things went by very quickly, definitely jump into the Facebook group. You can comment on the post with this episode. We have some amazing members who will answer your questions, who will show you where to find the information. It's likely a previous episode, but we have people in clinical trials, we have people who were in on a lot of the investor calls. They listen, they take notes, they're fantastic. So if you haven't joined Diabetes Connections the group on Facebook, I highly recommend it. My interview with Kevin Sayer here in just a moment. But first, Diabetes Connections is brought to you by Gvoke HypoPen and you know low blood sugar feels horrible. You can get shaky or sweaty or even feel like you're gonna pass out. There are lots of symptoms and they can be different for everyone. I am so glad we have a different option to treat very low blood sugar. Gvoke HypoPen, it's the first auto-injector to treat very low blood sugar. Gvoke HypoPen is pre-mixed, it's ready to go with no visible needle. Before Gvoke, people needed to go through a lot of steps to get glucagon treatments ready to be used. And this made emergency situations even more challenging and stressful. This is so much better and I'm grateful we have it on hand. Find out more, go to Diabetes-connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon.com/risk. Kevin, thank you so much for jumping on with me. Another busy time for you, as so many presentations, lots of studies, lots of news, lots of upcoming and anticipated news. So I appreciate you spending some time with me and my listeners. Kevin Sayer 5:11 Oh, thank you for having me. It's always fun. Stacey Simms 5:13 Let's set the table a little bit here. We are following up on the ATTD conference and you are in the midst. Dexcom, as we're speaking of ADA, this is all still virtual though, right? Kevin Sayer 5:25 It's all still virtual, yeah. I was looking, was hopeful earlier this year it might be in person, but not yet, probably not till next year. Stacey Simms 5:33 Well, as we look through the news that is coming out of both of these conferences, I could just start out by saying it's kind of, I'm not sure victory lap is the right phrase here. But it does seem that almost every study is basically, Kevin. CGM works, it's good, it helps, we get better outcomes from it. So let me just give you a moment to talk about some of that. Because there were so many, we can't really touch on all those studies. Kevin Sayer 5:58 There are so many studies, and it's good for a number of different groups as well. You've got all the automated insulin delivery studies, and other than Medtronic's product, all these other studies are powered by Dexcom. You've got stuff in the UK, France, Insulet Tandem in the US, there's a lot of good news on the automated insulin delivery system front. And all these works are powered by Dexcom G6 right now, you've got studies that we presented at ATTD ast week, or that were presented by physicians that we're very well aware of. The mobile study, which was for patients with Type Two Diabetes who are on basal insulin only. You know, when you start a study like that, it's kind of a risk, because you ask yourself the question, "What happens if it doesn't work?" Well, it works. And what we learned is these patients, even though they're not making a decision every four or five, six hours, for eating, they are making decisions about what they eat, and what they do and how they exercise when they can see data. And they can see the effects of what goes on in their lives. And their time in range goes up significantly, if they can see what their time and range is, you know, they've been operating in the dark, and people would argue that they don't need it all the time, like I do. And so that study, we think is just really good and will be the basis, hopefully someday for getting CGM coverage for that group of patients. And so we'll push on that one. There was another study we had last week, or at ATTD. Early in the month, published in Belgium, where a coalition of diabetes gurus I guess, over there's the best I'd call them, it's really all the leaders in the Belgian diabetes community, took a bunch of intermittent CGM users and put them on Dexcom G6 for an extended period of time. And then we looked to see what happened. And what we saw is on real time CGM, the patients are better in every category, every single category, time in range, hyper(glycemia), hypo(glycemia), you name it, they did better. So we really did validate the Dexcom equation over competitors with that study. And we think it's very important and they realize real time CGM, it is important, it is important for data (to) be accessible. And the alerts are something that you can use. There are other studies being presented by other people in the Type Two, Arena-Kiser's got a study where they show patients do well on, Doulas got several studies, they're across the board. And the evidence is building for these other markets. But it starts at the beginning, obviously with automated insulin delivery and, and we work our way down. But we've had information presented across the board showing the utility of Dexcom. And if you've been to this study, this meeting 10 years ago, like I was when I first started here, my literally, my first month was my first Dexcom ADA, nobody even knew who we were. And those who did said yeah, the product's not real great. So times have changed pretty dramatically. Stacey Simms 8:41 Do you remember what that first study that was presented at ADA or ATTD? Which one it was that you were there for 10 years ago? I'm curious of that. Kevin Sayer 8:50 Back in the day? Stacey Simms 8:50 Yeah. Kevin Sayer 8:51 First study, we didn't even present studies. Back then, we, I will tell you the most important study we did, we did a study in where we first got ADA recognition, we did a study with our G4 system against a competitor in Europe. And we got a bunch of recognition there. And then the next study that really got us a lot of recognition in ADA meeting was our DIaMonD study where we show the people on multiple daily injections. If they went to CGM, they would get much better results. What it was hard for me to learn is you don't say I want to do a study like this and get it done in a week. It takes a couple of years to accumulate all the proper data, process it, develop all the subsets and everything. And so my patience has been has been level set with respect to studies like this. And there's multiple studies going on in the field that will be presented over the next several years. Stacey Simms 9:44 All right. Well, that's a really good segue to moving ahead, because, as you know, my listeners are very interested in this technology. And the slide that probably got the most attention in our groups was one that was presented at ATTD about introducing the Dexcom G7, showing all of the features of this. So let me, I'm not going to go through all of them, obviously. And you and I've talked about this many times before, but faster warm up. It's smaller, simple application, all in one. This is all still part of the plan, as we had talked about before. Kevin Sayer 10:19 Oh, yes. Stacey Simms 10:19 Okay. Kevin Sayer 10:20 Yeah. And, you know, we started working on the G7 before G6 was even in clinical trials. The G7 is a project we've envisioned for a long time, Verily, actually it was Google Health before then, Verily was a partner with us in designing this product, and we (were) working out for quite some time. And the goal is to simplify CGM for everybody across the board, what I often say is everything you love about G6, you'll love more about G7, the size is so small, you don't really recognize that it's on your body. It's really a great profile, a little bigger than a nickel. We're running this study with arm and abdomen indications. And while patients wear them wherever they want, we're going to show you that it can be worn wherever you want. And I think that's a big deal, that we go ahead and do the work to do that. The faster warmup is kind of mind-blowing when you put a G7 up and then you look after you pair it. And then you look and see you only got 25 minutes left, it's like, oh, wow, I don't have to do the two hour countdown. You know the accuracy and performance that Jake presented at ATTD shows that we're not, we're not ever going to go easier on the performance side and say good enough, we always push ourselves to offer something that will keep people safe and confident with what they have. The app is completely new, we'll build things into the app over time, like automated, the frequently asked questions feature we have now but we're just gonna keep making it better. Some of the features of our Clarity system will ultimately be in the app. So you'll get more information. When you go to it and look at it out of the get go. You know, we'll get it approved. It'll be a while before our partners have integrated their systems. But we're working with Insulet and Tandem already on G7 integration, it'll be able to talk to multiple devices at the same time. Its manufacturing cost ultimately will be less expensive. It's been designed for an automated process. And we've got fully automated lines up and running to assemble the G7 sensors. We have, in fairness, have automated G6 lines up and running now too, but we've got special transmitter lines and center lines and those kinds of things. It is going to be, a really, the most advanced CGM ever. Stacey Simms 12:25 Well, you've touched on a couple of listener questions already in that testing alternate sites, including arms, integration with the systems that are already using G6, so I don't want to spend a lot of time going in depth on things that you've mentioned. But in the slide it said direct to watch capability. Right back to Kevin clarifying what was meant in that slide. But first, Diabetes Connections is brought to you by Dario Health and bottom line, you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us with that and that he understands the plan has to change as Benny he gets older, you want that kind of support so take your diabetes management to the next level with Dario. Their published studies demonstrate high impact results for active users like improved in-range percentage within three months, reduction of A1C within three months and a 58% decrease in occurrences of severe hyperglycemic events. Try Dario's diabetes success plan and make a difference in your diabetes management. Go to https://mydario.com/diabetes-connections for more proven results and for information about the plan. Now back to Kevin Sayer, answering my question about what the company means when it says the Dexcom G7 has direct to watch capability. Kevin Sayer 13:44 Capability. Yeah, it won't go there first pass. But we had to have different electronics and a different radio set to go direct to watch than what we have in G6. And it's easier to get us to change than it is to get Apple changed or to change their watch. And so as we were doing the G7 system, we did contemplate that. So it is configured to do so, I do not believe it's in the first release. But it will be not long after that. We'll have a direct to watch capability. And we know people really want that, the watch presents interesting problems. And we can all sit and say we want that. But you have to charge your watch every day or at least every 36 hours. Where are you getting your alerts if you're direct to watch and it's on the charger? And you're in different parts of your house? There's complexities to the watch that go far beyond just direct to connect. And particularly with the FDA who've used the alerts in the alarms and the connectivity is so important that we had to make sure we do it right. So we'll work on that and get it wired appropriately. But I look, I know what something I would want If I were a user. So we continue to push for it. Stacey Simms 14:44 Just to follow up on that. When you say it won't be in the first iteration of it but you know, it'll be, it's capable, it'll come, that it kind of implies that you figured out what to do with the alerts and alarms when someone hangs it up to charge. Kevin Sayer 14:56 I don't know what they have figured out. I just know they're addressing it all. I have to plead the fifth, I just, as I've asked that question, they said, "Well, here's a problem. How are you going to deal with that?" I said, "Well, you guys don't have to tell me." They'll come up with the right answer, Stacey. Stacey Simms 15:09 Alright, so, I'm sure they will, but to say direct to watch capability, there's a little parentheses that says when we figure it out, Kevin Sayer 15:15 Oh, I know we're working on it, but... Stacey Simms 15:17 Okay. Kevin Sayer 15:18 But Stacey, we couldn't even go direct to watch before with the electronics. We couldn't go direct to watch with a G6 transmitter, the G7 electronics stack and configuration is such that it can go direct to the watch, we could not with G6. Stacey Simms 15:32 Okay. Many more questions. My listeners are very, of course, interested in the adhesive changes. Is the G6 to G7 change, I know you're addressing this, I know you're testing it, we've got emails from people who are in different trials for adhesive and reactions and things like that. And I have lots of questions, people say it's getting better, other people say it's getting worse. Anecdotally, it's very difficult, obviously, for me to know. Talk to me a little bit about those changes and how it's improving. Kevin Sayer 15:58 Well, we've tested numerous adhesives before we landed on the adhesive we selected for G7. One of the reasons we kept the product life down to 10 days is to make sure we have enough adhesive to get to that 10 days. We'll be putting the overpatch in every box. So if somebody wants an overpatch, they don't have to call us. So everybody should be thrilled with that one. And it's quite easy to use, we're hopeful that there's no allergy with G7. Somebody's always gonna have a reaction, that's just physiology, but we're working with new tapes for G6 already, where it will hopefully have something. The things that cause a lot of the allergic reaction in G6 we've eliminated from the G7 manufacturing process. So we're hopeful that a lot of this stuff goes away on its own, we'll monitor it very quickly. But we've already got four or five other G7 adhesives in test in addition to the ones that we're going to launch with, to make sure we can create better options in the future if we need to. So, you know, stay tuned on that one, we are comfortable. As I sit here, we will not have the same level of reaction that we would have at G6 when we change it. But yeah, we won't know till we're out there. Stacey Simms 17:09 Yeah. And you mentioned the 10-day wear and part of that being for adhesive. But my understanding is that the idea is for 14-day wear for Dexcom G7. Kevin Sayer 17:19 Eventually. Stacey Simms 17:20 Eventually. Kevin Sayer 17:21 Eventually, not again, not first pass. We'll get it approved with 10-day data, very important to us is...
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In the News... Walmart's new insulin, Omnipod 5 studies, stem cell updates & more!
07/02/2021
In the News... Walmart's new insulin, Omnipod 5 studies, stem cell updates & more!
It's "In the News..." the only LIVE diabetes newscast! Top stories this week: Walmart private label insulin, Omnipod 5 pediatric study, Afrezza pediatric study, Stem cell updates, A new extreme challenge for a T1D ultra-athlete Join Stacey live each Wednesday at 4:30pm EDT at the Diabetes Connections Facebook page ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Transcription below: Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more when you have the time. XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know… Stuff” XX The top story this week - Walmart launches the first-ever and only private brand analog insulin at a discount off the list price. This new brand ReliOn Novolog will have vials priced at $72 and a package of pens at $85 – compared to the list price of $289 and $558 respectively Walmart worked directly with Novo Nordisk for the manufacturing of this insulin which will be in regular stores this week and in Sam's Club locations in mid-July. Interestingly, this price is not below the one offered already by using coupons from groups like GoodRX or even the insulin manufacturers assistance programs. If you need help paying for your insulin, I’ll link up more info on that as well. XX As expected, loads of info and studies from the ADA scientific sessions virtual conference that just wrapped up. Please check the links I’ll include because these are just highlights. XX Insulet is out with the results of their latest pivotal trial for the Omnipod 5 Automated Insulin Delivery System in very young children. The system improved time in range and reduced A1C in children 2 through just under six. I can tell you from experience, this is a tough age group for many reasons, including the fact that they can’t self-treat or really tell you what’s going on. Parents and caregivers reported significantly improved sleep quality Another Omipod 5 study with people aged 6 through 70 showed similar improvements. The system is awaiting FDA approval. XX ViaCyte, Inc. released preliminary clinical data from its stem cell-derived islet cell replacement therapy for people with type 1 diabetes. They show the implanted pancreatic cells produced their own insulin – which increase glucose-responsive C-peptide levels, increased time in range, and reduced A1C. This method protects the stem cells in a pouch – that’s put very simply – Viactye is working on several different methods toward a functional cure. https://www.prnewswire.com/news-releases/viacyte-reports-compelling-preliminary-clinical-data-from-islet-cell-replacement-therapy-for-patients-with-type-1-diabetes-301320084.html XX Another company on the same track.. Sernova Corp also showing their Cell Pouch transplanted with insulin-producing islets is safe and effective. One patient has finished the trial and has now remained insulin independent – that means no requirement for injectable insulin - for 14 months with optimal glucose control. This is a person who’s lived with type 1 for 47 years.. https://www.thenewswire.com/press-releases/1k3wFKYMv-sernovas-principal-investigator-presents-interim-data-and-positive-patient-outcomes-of-phase-i-ii-t1d-study-at-the-american-diabetes-association-81st-scientific-sessions.html XX More from ADA conference - In two small studies, the ultra-rapid acting insulin Afrezza was found to be safe in children with type 1 and adults with type 2 diabetes. Inhalable insulin is currently only approved for adults so the goal here was to look at safety.. which looks good. But it’s also worth noting that . Time in Range increased from 39% at baseline to 62% which is more than four additional hours spent in range each day! https://diatribe.org/top-highlights-day-1-ada-scientific-sessions-2021 XX New info in on Medtronic’s Extended-Wear Infusion Set. This is the pump inset that lasts seven days. This study shows that 75% of the time it makes it to the full seven days – Medtronic’s 3 day infusion sets have a 67% survival rate. Device failure rates were very low – 8 cases out of more than 3-thousand sessions. Satisfaction was high – with people citing convenience of use, ease of insertion, and comfort of wear. This extended wear set is approved in Europe, available in Finland and has been submitted to the US FDA. https://diatribe.org/day-2-3-highlights-ada-scientific-sessions-2021 XX More to come, including news on Control IQ and an endurance athlete starts an amazing new trek.. but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. They cover everything from snake oil to the actual Eureka moment. There’s even an episode about the guy who discovered the importance of hand washing in hospitals and how no one believed him. And this all actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts.. Back to the news… XX Control-IQ continues to get high marks. This study looked at adults with an average age of 70 who already had A1Cs around 6.9. Three months after staring Control IQ, time in range increased from 64% to 87% which is 5 and a half hours more each day. All of these adults had prior experience with continuous glucose monitoring and insulin pumps. XX Former guest of the podcast, Sébastien Sasseville, is off on a mission to cycle across Canada in 14 days! Sasseville is a Canadian endurance athlete – he lives with type 1 - and it’s going to take about 250 miles a day to get to this goal. Sasseville says he’s riding to bring attention to the issue of access to technology – he uses the tslim x2 and Dexcom G6 – and to support JDRF Canada’s Access for All campaign. He set off on June 28th and is documenting the journey on social media. Sebastien Sasseville cycles across Canada: https://www.facebook.com/CanadaRuns. That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – a conversation with Dexcom’s CEO all about the upcoming G7.. I asked him all of your questions. Our current episode out right now is with Nick Jonas – sharing his thoughts on the new campaign to educate about Time in Range and talking about he manages his T1D during concerts, shooting movies and during TV tapings. Thanks and I’ll see you soon
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Nick Jonas and The Global Movement for Time in Range
06/29/2021
Nick Jonas and The Global Movement for Time in Range
Dexcom is going big in their new campaign to get us talking more about Time in Range. This week you'll hear from their most famous spokesperson, Nick Jonas. The singer and actor was diagnosed with type 1 diabetes at age 13, back in 2005. In this recorded webinar, he answers questions about the new campaign and shares some behind the scenes info about his own journey with diabetes. As Stacey says in the episode, for this event, media was invited to send in questions. The organizers selected the questions and they were asked by Melissa Katz, who is credited as host and representative of The Global Movement for Time in Range. The Global Movement for Time in Range is a global consortium of diabetes community thought leaders working together to improve the understanding and accelerate the adoption of time in range as the standard of care in diabetes management. With the support of Nick Jonas, Beyond Type 1, Children with Diabetes, College Diabetes Network, Dexcom, JDRF International and Taking Control of Your Diabetes, the group will jointly address issues to improve the lives of people with diabetes. To learn more about the movement and how to get involved, visit . 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 below: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, a new effort to get us talking more about time in range. Dexcom is launching this campaign with their most famous spokesperson, Nick Jonas, Nick Jonas 0:35 I would say A1C is a useful piece of data. But as I mentioned before, we're talking about a collection of numbers and you receive that data after a certain period of time, our world and specifically my world on so many people out there moves at such a rapid pace that the more information we can have at the fingertips, no pun intended is really incredible thing. Stacey Simms 0:56 Jonas answers questions about the time in range campaign and shared some behind the scenes info about his own journey with diabetes. 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 and oh so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new, my son was diagnosed way back in 2006. Right before he turned two, he is now 16 and a half. My husband lives with type two diabetes. I don't have diabetes, but I have a background in broadcasting and that is how you get the podcast. I doubt he needs this introduction. But singer and actor Nick Jonas was diagnosed with type one at age 13 in 2005. He very famously partnered up with Dexcom in their first Superbowl ad earlier this year, and now he's part of that company's effort to educate about time in range from the news release they sent over Dexcom along with beyond type one and organization Nick Jonas co founded children with diabetes, the college diabetes network JDRF International and taking control of your diabetes has announced the global movement for time in range and awareness and education campaign to improve the understanding and accelerate the adoption of time and range as the standard care in diabetes management. For this event, we were invited to send in questions ahead of time, the organizers selected the questions then they were asked by Melissa Katz, who is credited as host and representative of the global movement for time in range. I sent in three questions. I'll come back after and tell you more about that. And I'll share the one that they didn't use. I will tell you right off the bat. Everybody I know in the diabetes media on that call sent in a question about Nick using his platform to push for insulin affordability and access. quick housekeeping note. Yes, Dexcom is a sponsor of the show, but they don't tell me what to say. longtime listeners are familiar with this. All my disclosures are on the website, Diabetes connections.com. But it's always worth the reminder. And you should know I edited out the very beginning of the session, they played a video about time and range. I'll link that up in the show notes as well. And I edited out the very end where they talked about details for media about getting the audio and some other notes. Other than that it is the full unedited q&a, and we'll hear it in just a moment. But first Diabetes Connections is brought to you by Daario. Health. Over the years I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on my son on Benny, the Daario diabetes success plan is all about you all the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for how to succeed, get the diabetes management plan that works with you and for you. Daria is published Studies demonstrate high impact clinical results, find out more go to my daario.com forward slash diabetes dash connections. Melissa Katz 3:59 So our guest of honor here needs no introduction, especially in his own diabetes community. So please welcome diabetes Rockstar Nick Jonas. Nick Jonas 4:07 Hello, diabetes Rockstar. That's my official title. Hello, everyone. I'm calling in from Cleveland, Ohio at the moment. So I appreciate your being on excited to talk to you about this global movement for time and range. It's obviously very important to me as a person living with type 1 diabetes since 2005. Now, I guess and I'm excited to be launching this movement for time range alongside Dexcom my partners and leading diabetes nonprofits, including one that I co founded, which was part of that video beyond type one, our goal is to make people aware of time and range and its benefits. And also just you know, I think so many people either live or know someone that lives with diabetes that are just not aware of this and to be able to kind of put this in the forefront and start a conversation around it. And it's an amazing thing for me as a diabetes ambassador and advocate, thrilled to be able to talk to you today and walk you through it all. Melissa Katz 4:58 Fantastic. So let's get right to it, as you know, the diabetes media submitted questions in advance, so they're on line waiting for those answers. And we're going to start with Matthew Garza from diatomic. He asked, who introduced the concept of timing range to you. Nick Jonas 5:14 But like all things with my life with diabetes, I rely on my doctor or everything, wonderful doctor, out of UCLA in Los Angeles and endocrinologist there. And we've had a candid conversations. And I think that the thing that really stood out to me was just talking to the benefits. And you know, we talked about in that video, high blood sugars are not ideal and have an effect on day to day life, diabetes, and obviously, lows can be really dangerous, and also have a major effect. The Dexcom clarity app definitely helps me with that, and has allowed me to see in real time throughout the day, my time and range or moments when it's not. And that's the thing to remembers, as a type one diabetic, you know, my main advice to newly diagnosed people is just to take a deep breath, and try to understand that there's going to be days that are unpredictable and harder than the others. And don't get down on yourself for that there are helpful tools and things that make that a little easier. But it is a journey. And once you can keep a positive attitude, it'll be alright. Melissa Katz 6:11 So that would encourage other people with diabetes to have this conversation? Nick Jonas 6:15 Well, I think there are a lot of ways, I think we hope to kickstart conversation here, obviously, around the importance, time and range and how it makes people's lives better. And I can speak to that personally, which really has become such an important thing for me to think about that time range and what it really means and not only relying on a one C, which would be your you know, kind of collect reading for two to three months and quarterly reading. This is a really valuable real time tool. And there's there's a lot of assets for people that maybe want more information, want to learn more about this and the impact you can have on their lives with their family and friends lives, when in range calm is a good one, obviously, and other social media tools and links that we'll share with you later. But a lot of good conversation starters out there and thrilled to be able to help in that process. Melissa Katz 7:06 That's a great way to segue to Jessica apples question. She's from a sweet life. And she's asking, we know CGM is a great way to monitor time and range. But what's the best way to achieve time range in your opinion? Nick Jonas 7:19 Well, everyone's journey with diabetes is different. And so I can only speak to mine. For me, it's a combination of obviously relying on my doctors kind of input and real time changes that we make to, you know, my life with diabetes as a whole one. And part of that is physical activity. Diet is a big aspect or just meal management and kind of understanding what's serving my body. And a lot of ways because I live such a crazy lifestyle, I think of myself more so as a an athlete in some settings and kind of prioritizing, living a healthy life with my diabetes, but also wanting to perform my best. And so there's, there's a combination of things that come into play there. And one of the other aspects is obviously, knowing where my glucose is a real time. And Dexcom definitely helps with that pretty obvious. And you know, I'm, like everyone else in the world person that looks at my phone way too much. And so having that information, right there is really helpful. Again, that's just my kind of personal, customized journey. And it's, as I said, a combination of all those things, but for everybody out there, it's gonna be different and you got to figure out what works for you. But having a bunch of tools in your toolbox is a helpful thing. And so that's probably a good place to start. Melissa Katz 8:31 Alright, so speaking of athletes, it was a big moment, during the Superbowl to have you up there doing awareness raising and education about CGM. That was pretty exciting. However, there was also some concern afterwards about access. That was a big conversation that occurred which was I think, was a good thing. And Ross Wallen from diabetes daily is asking, CGM can be expensive both in the US and other countries, especially those without robust healthcare systems. And in some countries, it's not available at all. Is there any worry about emphasizing time and range when some people won't be able to access CGM? Nick Jonas 9:03 I think that very aware all of us on this call and beyond and all the partners, the need for access and that growing conversation and priority for us all in the US and globally. You know, I think that that the exciting thing for us was starting the conversation about awareness in a big way on something like the Super Bowl was a really big step. And so I was thrilled to be a part of that. And thinking back to a time You know, when I was newly diagnosed, if there was someone that I looked up to or admire, who normalized something like diabetes for me on a stages basis, that would have been really exciting, which I think just again, helps the bigger conversation of this need for access around the world. And we have the onsite one are fully committed. We have a wonderful board there that that have been speaking about this a lot and really building a game plan from the ground up and wanting to see that change really happen and do all we can be part of it as well as the other partners I know that are on this call. So it's priority for us, and definitely something we'll work on is. But as you said, the Superbowl was was such an exciting moment, and something that I hope we can do more of taking diabetes to big stages like that. And just normalizing a bit. Melissa Katz 10:25 Absolutely. So you mentioned A1C earlier, and my classic is with diabetes, mine is asking a when c remains the gold standard for diabetes care, where does it fit in this admission? Nick Jonas 10:38 Well, I'm certainly not a doctor. I wouldn't even consider myself a diabetes expert, obviously, even though I've lived with this thing now for quite a while and have my days where I feel like I've really nailed it. But I would say A1C is a useful piece of data. But as I mentioned before, you're talking about a collection of numbers and you receive that data after a certain period of time, our world and specifically my world on so many people out there moves at such a rapid pace that the more information we can have at the fingertips, no pun intended, is really an incredible thing. So I think that that time and range shows the trends in real time provides much more complete picture of glucose control over time, which is really a great thing. It's not to say that it's a, you know, one or the other. You know, there's many ways to manage your life with diabetes and enhance your life diabetes, but I think that the more information you have, the better it's going to be. And the more time and range, it just is obviously going to be Melissa Katz 11:42 better days. You probably know all of our diabetes media or either have type one or have a family member for the most part. And Stacey Simms is a mom with a son who has type one, and she has a podcast called Diabetes Connections, and shows her a little bit more about your personal journey. So her question is, we'd love to hear about how you prepare for and recover from physical days. Unknown Speaker 12:05 I know you have a lot of those. Stacey Simms 12:11 Right back to Nick answering my question. But first, Diabetes Connections is brought to you by Gvoke Hypopen . I mean, you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar. And in the case of very low blood sugar, why do we carry emergency glucagon there's a new option called Gvoke Hypopen, the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the gvoke logo gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke Glucagon dot com slash risk. Now back to Nick Jonas, and he's answering my question, actually a listener question about what he does to plan for and deal with very active days. Nick Jonas 13:05 Yeah, I mean, I have a physical day coming up today, rehearsals and I'll be moving around singing and dancing around all day and all that and, you know, my PrEP is really to try to get good rest, and then start with a good meal, something that kind of sets me up for success with all the necessary protein and macronutrients and other sort of sustaining carbs. And then from there, just about staying on top of it. I like to just kind of frequently check in and see where I'm at and make real time adjustments. Knowing to that, obviously, the physical activity is going to have an impact. And whether it's this thing I'm doing now, or touring, or even just going out for day golf, you know, I'm always trying to stay on top of it and rely on my friends and family to if there are things that I need or if I need a second to take care of something, whether it be high or low blood sugar, then I take the time to do that. Melissa Katz 13:55 Yeah. All right, as I said, faces a mom. So she's also concerned about your sleep. And she's asking any insight for your routine and how you prepare for sleep. Well, I Nick Jonas 14:04 think like most people, my routine is basically to watch Netflix. So I get tired and hope that I can just sleep peacefully through the night. That seems to be the routine these days. But outside of that, it's pretty simple. I just, there's a certain range I like to be in before asleep, so that I don't overcorrect. If I'm higher or low that I'm hanging out there too long. I try to kind of target that range. And then obviously, you know, the alarms within the Dexcom really helps well and when I'm traveling I'm not with my wife, I'll share with her and that kind of gives her peace of mind which is a wonderful thing and really helpful tool. Melissa Katz 14:44 Alright, so we're talking about the Super Bowl and we've heard so many sprays of little kids kind of jumping up and down. So excited to see you on TV. And you are diabetes role model for so many people. I'm curious about who were your diabetes role models when you were growing up? Nick Jonas 14:58 Well when I was newly diagnosed that there really wasn't a person that I knew of that had diabetes or a role model of sorts, you know. So I think it was a real goal for me to be pretty outspoken when I was newly diagnosed and living a pretty public life, hoping that it would bring people some encouragement and that they would have someone to feel like they're on a journey with and what's happened is in being more open and honest and kind of outspoken about living with type one, I feel like my life's been enriched by hearing stories, feeling encouraged, you know, whether it's watching the superbowl commercial with their friends and family and feeling normalized. All of a sudden, or or, you know, whether a song that I've written I've spoken about this journey has encouraged them, those stories that in turn encouraged me and those become my role models and my heroes, my diabetes heroes. Melissa Katz 15:52 Alright, so what resources should we be finding people to about the movement? Well, one enraged, Nick Jonas 15:57 calm is a helpful one, lots of educational resources there. And you know, of course, there's this little thing called social media, it can be very helpful. So hashtag one range, and there will be lots of other assets, I'm sure you guys will share with them. But really, again, excited for me to start this conversation. And, you know, to be working alongside some partners who I know are passionate about, not only this initiative and program, but also doing good in the world and the nonprofit aspect of this the thing that that is most inspiring and exciting to me, outside of the obvious, which is enriching and encouraging people to you know, live with time and range, you know, that which is it's been an invaluable tool for me. So, a lot of positives here and thrilled to be a part of the conversation. Melissa Katz 16:43 Well, thank you so much for the time this morning. We know how busy your schedule is, and how important the diabetes community is to us. So thanks for making it a priority. Thanks for having me. Stacey Simms 16:51 You're listening to Diabetes Connections with Stacey Simms. As always more information at Diabetes connections.com. If you can't find the show notes on whatever podcast app you're listening to,...
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In the News... Government vs Insulin Companies, Afrezza Covered, #DData2021, and more!
06/25/2021
In the News... Government vs Insulin Companies, Afrezza Covered, #DData2021, and more!
It's "In the News..." the only LIVE diabetes newscast! Top stories this week: Maine passes insulin safety net program MS Attorney General vs Insulin Companies Afrezza covered by Medicare D-Data Exchange news Looking ahead to ADA2021 Join Stacey live each Wednesday at 4:30pm EDT at www.facebook.com/diabetesconnections ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription below: Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and each week I’ll share the top diabetes stories and headlines of the past seven days. We do this live on Facebook so whether you’re joining me right now or watching or listening after, I’m here to get you up to speed quickly on what’s happening with diabetes technology, research, and our community. As always, I’m going to link up my sources in the Facebook comments and in the show notes at d-c dot com so you can read more when you have the time. XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff” XX first off.. want to give you a heads up that ADA Scientific Sessions is kicking off this weekend, so expect to hear studies from just about everyone in the space. I’ve got interviews lined up for the main show. There are usually some breakthroughs and – while you can’t really count on it – some FDA approvals seem to come out this time of year as well. Stay tuned and follow the hashtag #2021ADA . XX Legislation news.. the Governor of Maine last night signed a new law creating an insulin safety net program in that state. It allows eligible Mainers to go to a pharmacy to get a 30 day emergency supply of insulin caped at $35. It’s modeled after a Minnesota law that was passed last year, the “Alec Smith Insulin Affordability Act.” Exactly what eligible means in this case it tough to find.. although it looks like everyone with type 1 who has less than a seven day supply – and - with some exceptions, can be used once every 12 months. https://www.wmtw.com/article/democrats-propose-bill-that-would-create-insulin-safety-net-program-cap-price-for-one-monthly-supply-at-dollar35/36512006 XX Mississippi’s Attorney General Lynn Fitch has filed a lawsuit against drug manufacturers and pharmacy benefit managers she says are working together to manipulate and inflate insulin prices. She says, quote, “ As the mother of a diabetic, I know the emotional, physical, and financial toll the unconscionable price of insulin has on families,” These companies are exploiting the vulnerable. I’m fighting back because you should never have to decide between paying the ever-increasing price of insulin or compromising your care.” The complaint alleges violations of the Mississippi Consumer Protection Act for unfair and deceptive practices as well as unjust enrichment and civil conspiracy. https://khn.org/morning-breakout/mississippi-attorney-general-alleges-insulin-price-fixing-sues-makers/ XX Starting next year, Afrezza inhaled insulin will be covered by Medicare. It will offer all doses under the 2022 Medicare Part D Senior Savings Model.. capping the co-pay per 30-day supply at 35-dollars. Afrezza is the only inhaled ultra rapid acting mealtime insulin in the US. MannKind – the company that makes it – has other assistance programs. But this is the first time it’s covered by Medicare https://www.globenewswire.com/en/news-release/2021/03/15/2192789/29517/en/MannKind-to-Participate-in-2022-Medicare-Part-D-Senior-Savings-Model-to-Make-Insulin-More-Affordable-for-Seniors.html XX Some updates on the The American Diabetes Association's Standards of Medical Care in Diabetes. These include more information on heart and kidney disease in type 2 and the studies we’ve been talking about for a while about teplizumab. Those show THAT medication can delay onset of type 1 in high risk relatives of people with T1D. XX DiabetesMine hosted it’s D-Data ExChange – a biannual gathering of leaders in diabetes technology and innovation. Organizers say the focus was on increasing access, expanding the market for tools like CGM to non-insulin users and consumers which has been a hot topic lately, and building out education and support. Couple of interesting presentations.. including Waveform – a new 14-day-wear CGM with a rechargeable transmitter and reusable sensor insertion tool. Levels – which is a consumer CGM product not just for people with diabetes and from Nudge BG – Diabetes inventor Lane Desborough’s new algorithm designed to slightly move or “nudge” basal insulin in response to CGM data. https://www.healthline.com/diabetesmine/summer-2021-diabetesmine-d-data-exchange-tackles-acces-education-and-support#Whats-on-the-June-#DData2021-program? XX quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. They cover everything from snake oil to the actual Eureka moment. There’s even an episode about the guy who discovered the importance of hand washing in hospitals and how no one believed him. And this actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts.. Back to the news… Canada has passed an act to establish a national framework for diabetes. The idea is to improve prevention, management and research. Diabetes Canada developed Diabetes 360° in collaboration with more than 100 groups and individuals from across the country. The World Health Organization recommends every country implement a national diabetes strategy-and since 2013, Canada has been without one https://www.diabetes.ca/media-room/press-releases/legislation-for-national-diabetes-framework-in-canada-becomes-law XX That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – it’s a bit up on the air right now.. but I am scheduled to take part in a news conference with Nick Jonas, who famously lives with type 1. I hope to bring that to you – and we’re sitting down with Dexcom’s CEO next week so if you have a question you want to ask, post it for me in Diabetes Connections – The Group. Our current episode out right now is all about the PROTECT trial –hoping to slow down or even stop diabetes in the newly diagnosed. Thanks and I’ll see you soon
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"I Want To Do This For Other People" - A teen with type 1 takes part in the PROTECT study
06/22/2021
"I Want To Do This For Other People" - A teen with type 1 takes part in the PROTECT study
The PROTECT Study is testing how well an investigational medicine works in children and teens with type 1 diabetes. The hope is that this drug, called teplizumab, would help people continue making more of their own insulin and reduce the need for injections, have better glucose control and/or fewer complications of T1D. To enroll in the study, you need to be within six weeks of diagnosis. That's a tough time to make a big decision like this. We caught up with the Lahners family - 16 year old Alex just marked one year with T1D and he's spent almost that entire year in the PROTECT study. He and his father talk to Stacey about the decision to take part and what happens during this trial. Alex doesn't know whether he got the drug or a placebo, but he's only using six units of insulin or less a day! In Tell Me Something Good - A big achievement for one of the first families Stacey found in the online community. is a high school valedictorian! Learn more about Medicare coverage for Dexcom: www.dexcom.com/G6-Medicare 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 below: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, imagine being newly diagnosed and having to decide right away whether to take part in a clinical trial. The protect trial is for kids and teens and needs to start within six weeks of diagnosis. Alex Lahners agreed to do it. Alex Lahners 0:42 I know that I don't want future people getting diabetes. And I didn't want anyone I knew to get diabetes. So I ultimately was like, I'm not just going to do this for myself. I want to do this for other people who are in the future going to be diagnosed. Stacey Simms 0:56 Alex is 16 he was diagnosed last year, he and his father talked to me about the decision to take part and what happens during this trial. And tell me something good. A big achievement for a kid I've never met but feel like I've known forever. One of the first families I found in the online community. 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. Always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed with type one right before he turned two. That's 14 and a half years ago. Now. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast. I told you a couple of weeks ago, I had a meetup It was my first in person parent meetup since COVID. I used to do these things all the time. And I've done them for years, I run a large parenting Group here in the Charlotte, North Carolina area. And it felt so good to see people again and have these meetups. But what was amazing, and this is what I told you about is that two of the families, newer diagnosed already have their kids in clinical trials. And we live in Charlotte, which is not where a lot of these take place. So I was really impressed. And I think that obviously speaks to the access that we have. We have fabulous endocrinology groups. And we have really great outreach programs from JDRF here in our area. But I think it also speaks to the availability of these trials. These were not happening back when my son was diagnosed back in 2006. And I covered one of these trials though, and we're going to talk about today. I talked about this briefly in an episode a few weeks back with Dr. Henry Anholt from prevention, the group behind the protect study. And here's what he told us at the time. If you missed that episode, I will link it up. But in a nutshell, the protect study is involving about 300 children and adolescents. They're in clinics across the US, Canada and Europe, you have to be eight to 17 years old, you have to be diagnosed with Type One Diabetes in the previous six weeks. So as I said in the tea's it's really quick, you got to know you have it and get in here to the study really quickly. You have to be positive for one of five T1D auto antibodies, you have to produce a minimum of your own insulin, they do those two tests as part of the study. And then you need to be otherwise generally Healthy Kids in the study are placed into one of two treatment groups, two thirds of the participants will get the actual medication here and 1/3 will be assigned to the placebo group. It's decided at random and the medication in this is decided at random and it is blinded which means nobody not your child, not you not the doctor will know what group you are in. And the medication is going to sound familiar it is teplizumab This is the medication that we've been talking about for several years. That is in many trials that is in front of the FDA right now, as a prevention for type 1 diabetes. It's been shown to prevent the onset for a couple of years. This is a little different, though, right? This is using teplizumab in kids who are already diagnosed, seeing if they get it right away. What happens. So the Lahners family was kind enough to talk to us about their experience here and I'm going to go ahead and sort of spoil the ending because I was amazed by this. Alex is Benny's age he is 16 He is not a small kid, and he is using about six units of insulin a day, a day a day. If you're at all familiar with teenagers, it just sounds absurd. We would love to say of course just from that that the city is a big success the medication works for Get Out Of course, you know, quick look, they don't even know if he was actually in the the part of the group that got that to close him up. He could have gotten the placebo and I guess be in a very long honeymoon be a really exceptional case. I don't know. We will talk about it in just a moment. But first Diabetes Connections is brought to you By Gvoke Hypopen. our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon Gvoke Hypopen pen is pre mixed and ready to go with no visible needle, you pull off the red cap and push the yellow end on to bare skin and hold it for five seconds. That's it, find out more go to Diabetes Connections dot com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk. Alex and Jeremy, welcome to the show. Thanks for joining me. Thanks for having us. I'm really excited to learn more about your story. You know, it's it's interesting at the same age as my son, but very different circumstances before we get to the studies and to play the map and all that stuff. Jeremy, let me start with you. Tell me the diagnosis story. How did you know something was going on? Jeremy Lahners 6:03 Well, it was a, it was a warm summer night almost almost a year ago. Now, we had noticed over the course of really a couple of weeks that Alex just was not feeling well. And he's always done kind of a good job of hiding some of his symptoms from us a little bit. And he had just not been feeling well. He was drinking a lot of water and was sleeping a lot. Probably the sleeping was the thing that we noticed more than anything. He just wanted to sleep all the time. Now, school had just ended maybe a week or two prior to this. And a lot of what we saw as symptoms we really chalked up to a teenage kid wanting to just be left alone. Now that school was done and wanting to sleep all the time. So we we sort of wrote a lot of stuff off, we did take him in because he had had indicated he had some symptoms kind of leading up to some of all of this. And our doctor at the time, based on the way that we described things really thought that it was allergies. And so we started allergy medicine, then the day before we took him to the hospital, we just noticed that he was really looking thin. And he's a wrestler, he has lost weight over the course of the many years that he's been wrestling and so we know what weight loss looks like for him. But this was very unusual weight loss. And so I actually asked him to weigh in that evening, and he had lost over the course of about a four week period he had lost about 30 pounds. And as 150 pound kid at the time, you know, losing 20% of your body masses is a lot. The next morning, he got up and he just he looked like a ghost you know, fail thin. And Stacey Simms 7:53 Alex, do you remember how you felt? Alex Lahners 7:56 I vividly remember all of this. I remember when it first started happening like that said I was drinking a ton of water. And it really just felt like my tongue was constantly sandpaper. And I would pour like, I pour water into my mouth and it would just wouldn't go away. And I was just drinking so much water. I think my water intake like quadrupled, or more. And it was really odd. I've never loved drinking water. But I think that was the first time I was like, Oh my gosh, give me all the water I can have. Stacey Simms 8:29 What did you think when you got on the scale? I mean, 30 pounds is extreme. I Alex Lahners 8:34 knew that I was losing weight. I knew that I'd lost weight and you know, every sickness you sometimes you just lose weight. But when I got on the scale, and I think I said I was at 134. And I had previously weighed in like 160 something. Yeah, I was that's not right. I remember weighing myself a second time, just to make sure. And it came up with the same number. And I was like, it's I went downstairs I told my dad I was like it says I'm 134. And we couldn't believe in I remember everyone like my mom, my dad and maybe someone else who was there. We were all just like really shocked at how much weight I had lost. Jeremy Lahners 9:11 Like I said, the next morning he woke up and just look real thin. And so we took him to the ER, we kind of had decided that was that was the line where it just something was clearly off. We didn't know what it was. They ran all of their tests, and probably within 20 minutes or so they came back and said, we're not sure exactly what's going on. But by the way, your son is a diabetic that could Yeah, I mean it was it was very kind of in passing a little bit. And I remember, you know, this was all during COVID. So only one parent could be with him at the time. So I'm texting my wife, and I'm texting her I said they're saying that Alex has diabetes, and she says there's zero chance of that. Tell them to rerun tests because they have no idea Do what they're talking about. They came back in and said, Yeah, his blood sugar is at 588. And that's tremendously high. He's clearly diabetic, we think you should probably take care of this problem. They put us on an ambulance and drove us down to the pediatric hospital in Charlotte. And we spent three days in the ICU, and they were able to get his blood sugar recovered, of course. And it was just a massive, massive crash course in all things type 1 diabetes. At that point, Stacey Simms 10:31 I didn't really have the opportunity often Alex to talk to you know, a newer diagnosed teenager who actually wants to talk about this stuff. I have to ask you, how difficult was it? I assume in the hospital, they made you do your own shots? And had you figure everything out? You know, what was that like? So give yourself the first injection. Alex Lahners 10:48 Honestly, when you first get diagnosed, or at least when I got first diagnosed, I got really lucky because I have some people around me who I had known previously, who were type one diabetic, I got extremely lucky with having resources to reach out to and people to talk to, I have always released previously to diabetes, I had always hated needles, shots, I hated everything. But obviously, getting diagnosed with diabetes, you kind of have to learn to get over it. I just kind of put it in my arm. And I was like, this is going to be a new reality for me, and I just accepted it. And I never I don't think I remember feeling any sort of way with how the injection felt or how it made me feel. I think it was just kind of like a, this is how it's gonna be. Stacey Simms 11:30 So you leave the hospital, you go back to trying to figure out how to do life now with diabetes. But your experience took a turn in that you pretty quickly got involved in a pretty cool clinical trial. Jeremy, how did you find out about the protect study? Jeremy Lahners 11:46 Well, we sort of jumped headfirst into things, the nurses at the hospital were outstanding and, and gave us all the wonderful material on on jdrf, I reached out to our local jdrf contact to submit Alex's paperwork and material and whatnot. And, of course, that put us on the mailing list of the various jdrf webinars and things that are going on and we follow it on Facebook, join the Charlotte type 1 diabetes parents group, all those types of things, we sort of dove headfirst into all of those resources. Within maybe a week or so I happened to see a webinar about that was upcoming about this protect study. And we thought, well, we should we should at least listen in we we weren't really convinced that it was a great idea at the time. But we figured we're in this now we need to at least listen to what's happening in the space a little bit and try to participate. You know, it was hard enough, sort of coming to grips with all the things coming at us. But we really did want to try to educate ourselves on on the various medical things that were going on. So that was what led us up to listening to the the details of the protect study. Stacey Simms 13:04 So what was involved? Tell me, you know, we haven't been involved in a clinical trial, much to my son's regret. He's always pushing me to get him in and we just haven't been successful. After all these years, I keep trying. So can you share with us a little bit of the process? Because it's not a local study? Right back to Jeremy, but first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that is very annoying to me and to Benny. It isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running at a strips, do you need some direction or encouragement going forward with your diabetes management, with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my daario.com forward slash diabetes dash connections. Now back to Jeremy as he starts to take us into their study experience. I had asked him about whether there was a local site it wasn't a local study. Jeremy Lahners 14:20 It's not it is a nationwide study. However, the nearest facilities to us were far from local. I think our nearest facility is technically Atlanta. But we had the opportunity during the the webinar they were interviewing Dr. Haller out of the University of Florida. And he was describing this protect study on to plumas AB and we thought it was a good study for Alex the sort of entry criteria for the study. They were accepting children kids under 17 years if I if I remember correctly, who either Were pre diagnosis or had been diagnosed within the last 45 days. So that immediately qualified us, I reached out during the webinar using chat tools inside the zoom to say, My son was just diagnosed, we'd like to learn more. And Dr. Haller reached out to us via email. The next day, we had a zoom call with just him a day or two later. And he talked to us in a lot more detail about how the study goes and and provided some options for us. So that was all the sort of pre work if you will, from there, we did take a day or two and, and we sat down as a family and talked about whether it, it made sense for Alex to participate. Both my wife and I had participated in some medical research studies. When we were in college, there was a paid program at our college, that you could take participation in some of those programs. So we had a background in it. And I think we were both pretty encouraging of Alex to participate in in the study. But, you know, Alex was 15, at the time, and we felt he was old enough and mature enough that he should really make the decision. And so we didn't leave it up to him, maybe with some heavy encouragement. But nonetheless, it was his call at the end of the day. And we would have supported that Stacey Simms 16:27 Alex had to make the decision. What were you thinking? Alex Lahners 16:29 So the decision was really, honestly hard for me at the time, I was still trying to get over like, just recently being diagnosed and trying to get everything under control, just to understand what was happening to my body. Ultimately, it boiled down to not only had mom and dad done, I guess, trial before they've done studies before, but I don't think anyone who has type 1 diabetes would tell you, oh, yeah, you should go out and get type 1 diabetes. It just it sucks. It's, it really is not fun. I thought if I would have had someone else 50 years ago, been able to prevent or tell me that I was going to get diabetes and have a drug to prevent the onset of diabetes, I would have taken it in a heartbeat, I would have done whatever it was. And I know that I don't want future people getting diabetes, and anyone I knew to get diabetes. So I ultimately it was like, I'm not just gonna do this for myself. I want to do this for other people who are future in the future going to be diagnosed or are going to be diagnosed later. I guess. Stacey Simms 17:36 That's really a wonderful sentiment. I mean, Jeremy, I don't need to tell you this. Alex, you're, you know, you're so well spoken and really mature about all of this. So thank you very much for for sharing that. We can be goofy later, I'm sure. So Jeremy, you fill out the forms or do whatever you need to do what happened in this trial. This is not a survey, this is a go to Florida, go to the hospital, get a treatment, what happens? Jeremy Lahners 17:59 We went down to Florida a couple days early so that Alex could get a COVID test. I think he was the first person in our family to get one of the touch your brain nose swabs. He really enjoyed that, I'm sure. And then we started the study. The study was sorry, the the first part of the infusion was 12 straight days of infusion. Generally, it was anywhere from three to four hours per day. We typically did that first thing in the morning. And thankfully, number one, Alex was at a school so it didn't interrupt school. Number two, my job is flexible enough that I was able to fulfill my work duties in the afternoons and evenings. So it really all worked out for us very much a perfect storm of good, if you will. But for 12 days straight we did the study, the infusion, and that first 12 days was probably the roughest simply because going in you don't know. It's...
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In the News... Medicare CGM changes, new rules for CGM in sports, and more!
06/18/2021
In the News... Medicare CGM changes, new rules for CGM in sports, and more!
It's "In the News..." your weekly wrap up of diabetes news and headlines. This week: Medicare move on CGM testing requirements New study on Eversense, implantable CGM One sport changes its rules for BG monitoring Diabetes when deaf - new research to help Women leadership gap in diabetes Join me live on Facebook each Wednesday at 4:30pm EDT ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription below: Hello and welcome to Diabetes Connections In the News! I’m so glad you’re here! I’m Stacey Simms and each week I’ll share the top diabetes stories and headlines of the past seven days. Whether you’re joining me live on Facebook or watching or listening after, I’m here to get you up to speed quickly on what’s happening with diabetes technology, research, and our community. Remember, these are headlines and summaries – so to learn more, I will put all of the sources and links in the Facebook comments and in the show notes at d-c dot com. XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff” XX here’s what’s In The News this week… Medicare does away with a big barrier to CGM use: you no longer have to show you’re testing four times a day. Dexcom’s G6 has been FDA approved for insulin dosing without fingerstick calibration and, along with the American Diabetes Association and other groups, has been pushing for this change for a long time. It becomes official on July 18th. https://www.cms.gov/medicare-coverage-database/details/lcd-details.aspx?lcdid=33822&ver=31&fbclid=IwAR1jiXFTy3LqdEoSnkGncAkNKpCSVzINPo-q3KZa4DGMgJiKi7pDgEr0eoI XX New study all about Eversense – this is the first and only long-term, implantable CGM. The PROMISE study looked at the accuracy and safety of their 180 day system with reduced calibrations. The MARD – which measures accuracy – was 8.5 to 9.1 which puts it in line with other CGMs available right now. The rest of the study showed it safe and effective. In October 2020, Senseonics asked the FDA to approve the 180-day wear version, and that submission remains. They are also working on a year-long version of this system. https://www.businesswire.com/news/home/20210603005866/en/Senseonics-Announces-Results-of-the-PROMISE-Study-Demonstrating-Strong-Accuracy-of-180-Day-CGM-Sensor Really interesting story out of cycling this week. The UCI - the Union Cycliste Internationale - is the worldwide governing body. They changed a few rules recently, including one banning the in-competition use of devices that capture information on metabolic values including, but not limited to glucose. Elite athletes and a lot of influencers are starting to wear CGMs even without diabetes – one company “Super-sapiens” promises easier energy management for athletes by doing so. Super-sapiens is the basically Abbot Libre with different marketing. They’ve been expanding the number of professional cycling teams they’re working with but this ruling may change that. People with diabetes – who use CGM for medical reasons – are exempt from the rule change. By the way, in the opposite direction, the Ironman triathlon, has Supersapiens as an official supplier. We are just at the start of this kind of thing – it will be very interesting to watch. https://road.cc/content/tech-news/uci-bans-blood-glucose-monitoring-devices-races-283891 mental health: https://www.endocrinologyadvisor.com/home/topics/diabetes/type-1-diabetes/psychoeducational-program-minds-ohp-welcomed-by-adults-with-t1d/ Great article from Beyond Type 1… looking at health care disparities – and what can be done – for people with diabetes who are deaf. Dr. Michelle Litchman has six family members who are deaf and just one of the challenges this community faces is that sign language interpreters are not always offered or available. And when they are, they don’t always know how to communicate health information. Over the next three years, Litchman will design diabetes programs with language in mind as part of a fellowship grant she’s been awarded. https://beyondtype1.org/diabetes-program-accessibility/ XX You might have heard about this big new study from Johns Hopkins saying that people with diabetes in the U.S. have become significantly less successful at controlling blood sugar. IMO it’s not being reported completely. Here’s the deal: These researchers used a survey that tracks 5,000 individuals annually for many health issues. Between 1992 and 2002, 44% of the study sample had an A1C under 7%. From 2007 to 2010, 57% had an A1C under 7 From 2015 to 2018, that dropped to 50%. Now.. that’s not great.. but it’s still an improvement from the initial starting point. And there was no published info about why. The price of insulin has only gone up since the beginning of this study and we have seen many other pieces showing that one in four people with diabetes in the US rations insulin. So I’d be careful about extrapolating too much about behavior or food from this study. https://www.medicalnewstoday.com/articles/diabetes-blood-sugar-control-is-getting-worse-for-us-adults XX Up next.. making a pancreas with a printer? quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible. ● Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. They cover everything from snake oil to the actual Eureka moment. There’s even an episode about the guy who discovered the importance of hand washing in hospitals and how no one believed him. And this actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts.. Back to the news… a new paper is out about the gap in women’s leadership in diabetes. These researchers say no one has quantified the percentage of women in leadership roles in our community. What they found? Not surprising – women are very well represented in terms of membership in professional communities and very much under-represented in leadership positions, grants and awards. They call for dropping barriers and creating environments that get more women in involved. https://www.docwirenews.com/abstracts/journal-abstracts/the-womens-leadership-gap-in-diabetes-a-call-for-equity-and-excellence/ XX And finally, A 3-D printing company is hoping to make diabetes research a little easier – by printing a living model of the human pancreas. Readily-3D’s novel technology is being deployed within the EU-funded Enlight project and is reportedly capable of 3D printing a biological tissue containing human stem cells in just 30 seconds. The Aim of the Enlight project is to develop the living pancreas model for the testing of new diabetes medications to improve both diagnosis and treatment. https://3dprintingindustry.com/news/readily3d-develops-3d-bioprinted-mini-pancreas-for-diabetes-drug-testing-191440/ XX That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – we’re talking to a family taking part in the PROTECT trial – this is a study hoping to slow down or even stop diabetes in the newly diagnosed. This kid is my son’s age – 16 – he’s one year into diagnosis and he uses about 6 units of insulin a day. And the episode that’s out right now is an update from Beta Bionics all about the iLet insulin pump. Thanks and I’ll see you soon
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"The System is Designed to Learn" - An iLet Update from Beta Bionics
06/15/2021
"The System is Designed to Learn" - An iLet Update from Beta Bionics
We are very excited to catch up with the folks from Beta Bionics! Their fully automated bionic pancreas is called the iLet. They are getting closer to submitting to the US FDA and were able to give us an update on some of the most anticipated features. Kate Farnsworth is a consultant for Beta Bionics currently acting as Digital Marketing and Communications Manager. She walks us through what makes the iLet a very different insulin pump, including: a system that only needs the user's weight (no basal rates or carb ratios), software that will learn from the user and make adjustments, how the system charges, waterproof status and much more. All dependent on FDA approval. Kate's daughter was diagnosed at age 8 and Past episode with Beta Bionics: 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 below Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, catching up with Beta Bionics . Their fully automated bionic pancreas, called the iLet has some new features not available in existing devices. And that's helped to ease the burden of diabetes in new ways. Kate Farnsworth 0:33 Working for companies like Beta Bionics give us the opportunity to reach a much wider group of people and really gives us the opportunity because we are a public benefit company to try and engage those people that aren't being engaged currently with the tools that are available. Stacey Simms 1:02 That's Kate Farnsworth a well known name from the DIY community. Now with Beta Bionics . She'll give us the latest news on the iLet’s development and share some personal stories of her family's journey with type one. Also this week, a big anniversary for the show, as well as for some of our listeners. 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, always so glad to have you on, we aim to educate and inspire about diabetes with a focus on people who use insulin, guys, it has been six years of Diabetes Connections this month, work six years I started in June of 2015. It kind of snuck up on me to be honest with you. I had started the show in May of 2015, actually, but it was just audio that I put on my blog. We didn't get accepted into Apple podcasts and all the rest until June. So that's where I'm marking it from. I had been working on it for months and months. And I kind of wish I had started earlier. But hey, I'm thrilled with how it's gone. Almost 400 episodes now, so many of you wonderful listeners who I hear from all the time. Thank you so much for sticking with me. And if you could just do me a favor, the best thing you could do, I'm not doing much to celebrate this anniversary, I'm not doing a big thing on social or anything like that. But if you could do me a favor, just share the show, share this episode, share whatever episode you like, or just share a link to Diabetes connections.com on your social media, you can put it on your own timeline. Better yet share it in the diabetes Facebook group. It really does help get the word out. You can leave a review that's always fun, but sharing the show itself or telling somebody about showing them even to this day, how to listen to a podcast really goes a long way. So will we be here for another six years? I don't know, man. I hope so. I'm not slowing down. I'm really excited about where we're going. And I love talking to people like my guest this week. Alright, let's get into it. My guest is Kate Farnsworth. She's a consultant for Beta Bionics currently acting as Digital Marketing and Communications Manager. Many of you know Kate from the DIY community. Her daughter was diagnosed at age eight, and we actually first spoke she was on the podcast in July of 2015. Just after we got started, we talk then about Nightscout she helped so many people get watchfaces set up back in the day among so many other things that she did. Now she helps run the Facebook loop to group with 10s of 1000s of members. Now the iLet, as many of you know has been one of the most heavily watched and anticipated devices in the diabetes space. First human testing was done in 2008. At Damiano the company founder has kept everybody up to speed over the years he has been very public showing the progress in presentations at conferences, and he's been on the show a couple of times himself, I will pick up those older episodes. for newer listeners. The iLet is meant to be a dual chambered pump. That means it will hold and infuse insulin and glucagon to help achieve better time in range. Just so we're all clear. Putting glucagon into your body isn't like eating sugar or infusing quick acting sugar like glucose or dextrose. Very simply put, injecting glucagon or infusing glucagon stimulates the liver to convert its stored glycogen into glucose which it can then release into the body. The eyelid is being designed with two cartridges and two infusion sets one each for the insulin and glucagon. But the plan right now is to move forward with just the insulin so just one chamber like a quote regular insulin pump for now. I know that was a lot but after Kate and I finished the interview, we realized that a quick description like that and some information about glucagon because I still explain it I still have a lot of people who are newer in the community who don't quite understand. So I really hope that that helped. Okay, a lot more in just a moment but first diabetes These connections is brought to you by Dario health. And we first noticed Dario a couple of years ago at a conference, and Benny thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed, you'll get a glucometer that fits in your pocket unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it. And personalized reports based on your activity. Find out more, go to my dario.com forward slash Diabetes Connections. Kate, thanks, thank you so much for joining me, Boy, am I excited to talk to you. I'm so happy to be here. Before we jump in, my listeners know that I promised this year that in 2021, I was gonna be very heavy on technology. There's so much in front of the FDA, there's so much going into pivotal trials and heading to the FDA that I thought it would be so easy to do all of these interviews. But I realized as we got further along that the very timing of all of this makes it very difficult for the companies to actually come on and share a lot of information because you are limited in what you can say and understandably so. So before we even get started. I know you have a disclaimer that you're probably going to bring out a couple of times during the interview. But why don't you go ahead and say that now. Kate Farnsworth 6:21 Thanks, Stacey. So the iLet bionic pancreas is an investigational device and it's limited by federal or United States law to investigational use is not available for sale Stacey Simms 6:34 as we go forward. And as you listen, I should also let you know that I've given Kate the opportunity as I did when I talked to Howard look from tide pool or you know anybody else who is in this phase of their device or technology, the opportunity to kind of let me know when I've crossed the line. So I may ask a question that you can't answer, Kate. But um, I think we all we kind of understand where we are. So I appreciate that. All right. Having said that, give us the lay of the land, if you can, where is the iLet? In terms of development, let's go high level as far as we can right now. Kate Farnsworth 7:07 Okay, so Beta Bionics is the company behind the iLet. And we're really different company because we're a certified B Corporation and the public benefit corporation. And that means our company is measured by an independent resource based on how our company's operations and business model impacts our workers, our community, our environment and our customers from our supply chain and input materials to our charitable giving an employee benefits. B Corp certification proves our business meet the highest standards of verified performance. For Beta Bionics . That means the people with diabetes and their loved ones have a seat at the table in our decision making. In that context that we're working to bring the commercial version of the iLet to market. There is currently a pivotal clinical trial testing the eyelid and people living with type 1 diabetes ages six enough. This trial is large and involves 17 different clinical trials sites across the United States. results from this clinical trial will potentially support our application to the FDA for regulatory clearance of the insulin configuration of the device in that population. Once the FDA application is filed, FDA review of 510 k market applications typically take about six months, which includes 90 days of FDA review time and time for response to questions that may come up during the review. Stacey Simms 8:39 My understanding is that the iLet is a device it's we're talking about an insulin pump here. And I guess what I would call an artificial pancreas or hybrid closed loop system, where it communicates with a CGM to help you stay in a certain range. But the island has always been talked about as needing minimal input. In other words, last time I talked to Ed he was talking about you put your weight in. And that's really the only information it needs from the user to get started. Is all of that still the case? Is that what's in these pivotal trials? Kate Farnsworth 9:09 Yeah, so that was designed to be initialized by weight alone. It doesn't require users to set curry shows or basal rates for instance, insulin sensitivity factors, the system uses your weight as a starting point and then learns quickly what your unique responses are based on CGM values that receives every five minutes. So with that in mind, we hope that once the FDA clears it, the iLet can be an automated insulin delivery device that requires very few inputs from healthcare providers and people with diabetes or caregivers. For us this solution isn't just about the feature is it's about the benefit that it could potentially give people reduced cognitive and emotional burden. You might recall Adam Brown has talked about the 42 factors that impact blood glucose at Ada conference and in his book bright spots and landmine, those of us in the community can definitely relate based on our own experiences. There are a number of diverse factors that pay people with diabetes on a whim, combine that juggling act with up to 180 diabetes related decisions that people with diabetes or their caregivers make each day. And we really do have a cognitive and emotional workload that those living without diabetes don't face. So our hope is that the iLet is cleared may reduce that burden, since it's offering a solution to type 1 diabetes management without the same numerical input as traditional employment therapy. Stacey Simms 10:43 Can you speak to the idea of just entering weight and like announcing meals, I mean, I think for those of us my son's used an insulin pump since he was two. So we're coming up on, we're coming up on almost 15 years of using an insulin pump. And the idea of interacting with it less is a little bit mind boggling. You're a mom of a person with type one, you have a child with Type One Diabetes, can you just speak to that idea? You've already talked about the burden being lifted a little bit, but is it difficult for people to kind of wrap their brains around and the reaction of when it does work as well as Kate Farnsworth 11:16 we assume I can't speak about the clinical trial right now or the results that we're getting. But what I can tell you as a mom of a child with diabetes, is that the cognitive and emotional burden that she feels just having to constantly worry about her diabetes is immense. And I think that we even as parents don't fully understand, you know, how much our kids have to think about diabetes, how much it impacts every moment of every day, and interacting with friends or going out or making decisions on whether or not they're going to sleep over at a friend's. And if there was a device that could potentially relieve some of that burden to me, you know, that's huge, that would be amazing for my daughter. So with the eyelid, when you're entering a meal, you would select whether the meal is the usual amount of carbs for you more or less, it's designed not to require you to count the actual number of cartons over time, the system's designed to learn what that means to you personally. So for my daughter, for example, might have a totally different usual meal than your son. So the system is designed to learn and adapt to each individual user. While there's, you know, that's the practical application. There are other considerations for wide the eyelid has been designed that way. There are 1000s of Americans who don't have access to an endocrinologist, we want him to engage them, we want to meet them where they are and help them get closer to their diabetes goals. I feel passionately about improving the lives of people living with diabetes and easing the burden they live with every day. And research has documented racial and ethnic disparities in diabetes treatments and outcomes. Technology uptake, for example, is much higher for white youth than black or Hispanic youth. As a public benefit corporation. Our goal is to get our solutions to as many people as possible. So we're actively exploring how we can reach the underserved populations and hope to be able to provide all people with diabetes, the same level of care, Stacey Simms 13:33 I want to make a note and come back to that because there's been such a wonderful, I don't know how to say it, I want to make a note and come back to that. Because years ago, we talked about the DIY community, how it was reaching so few people, it was such a great benefit, but really not for a lot of people. And so many of you are passionate and wanted to bring this commercial product out. And now it's being done. So I'm gonna I want to follow up on that in just a little bit if I could, but let's continue to kind of talk about where we are, thank you. But the idea of no carb counting, to me, would be such a relief, because one of the shocking things that happened in my brain was within the first year of Benny being diagnosed, I think he was too he wasn't eating as much food as he does now at 16. But we realized that carb counting was so inexact and such guesswork, because you could try to be as exact as possible at home. But then you would go to a restaurant, and you really had no idea. And as you listen, my husband owned and operated a restaurant for many years. So you can tell somebody, this dish has this many carbs in it. But first of all, restaurants put so much more butter and fat, and seasonings and things in your food because that's what makes it taste so delicious at the restaurant, which affects how it breaks down in your body. But also, one person can make it to the next day even at a fast food restaurant, it's not going to be exactly the same. So what was the thinking behind it? Is it really just to make it easier on people or did the researchers and the founders here also kind of think that carb counting really isn't that exact Right back to Kate answering that question, but first Diabetes Connections is brought to you by Gvoke Hypopen and you know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're gonna pass out. There are lots of symptoms and they can't be different for everyone. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen. It's the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I am grateful we have it on hand, find out more go to Diabetes connections.com and click on the Gvoke logo. gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon.com slash risk. Now back to Kate answering my question about the inexact science of counting carbs. Kate Farnsworth 16:03 Yeah, carb counting is not very accurate. People are notoriously bad at carb counting, my daughter might be looking at her meal and see 15 carbs, another person with diabetes might count those curves completely differently, it's really helpful to be able to look at your plate and say, you know, this is usual for me, or this is more for me, this breakfast is way more than I would typically eat. So I'm gonna let the system know about that. Rather than counting the exact numbers in that restaurant meal. Stacey Simms 16:43 I could talk about that for an hour. That to me is so revolutionary Benny the other day, we got these big cookies, which is you know, a real tree. We don't eat a ton of junk food, but we don't eat super low carb either. But there were these giant chocolate chip cookies. And he was higher than usual later. And I just asked him, I'm like, Hey, I'm just curious, because I don't look at everything he eats or talked about every bolus anymore. So what did you think those cookies were? And he said, Oh, I think it was I think I put in 35. I was like, dude, those were like, 65. Easy, right? And he was what I did. He's had diabetes for 14 years. Right? It doesn't mean he's a bad person. He just didn't. He just took a guess. Kate Farnsworth 17:19 Yeah, exactly. Exactly. We have the same with my daughter. I don't manage her diabetes, you know, as actively as I used to when she was little, but occasionally I'll ask her, you know, how many carbs Did you think were in that, and then we'll compare it to the package. One really big example that we have, we have those flat pretzels, and they're in a big container. And she'll just pour herself a bowl. And, you know, she guesses on how many carbs are in that bowl. But one time we actually put it on the scale and calculated and she was 45 carbs consistently, because she had been doing this for some time. And I know the same thing happens with cereal, for example, once we move past that carrying a scale with us phase, our eyeballs are the judges and they're not very good. So yeah, Stacey Simms 18:10 I think some people listening might be saying, Well, why don't you carry scales with you anymore? What kind of parents are you, but I got to say I'm not into adding any more diabetes burden, then we need to so I'm thrilled with letting technology replaced my brain on this, you know, control IQ has done a wonderful job for us and really helping and you know, what you're talking about is only going to help as well. So the big question with the iLet has always been about the dual chambered pump. This was a pump that years ago was talked about and I know you're still working toward a dual...
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In the News... Apple drops a BG hint, Dexcom G7 update, Omnipod 5 study and more!
06/11/2021
In the News... Apple drops a BG hint, Dexcom G7 update, Omnipod 5 study and more!
It's "In the News..." the only LIVE diabetes newscast! Top stories this week: -Apple drops a BG hint in the latest watch update -New info about Dexcom's G7 -Omnipod 5 study released -Diabetes drug shows promise for weight loss -Power of peer support Join Stacey live each Wednesday at 4:30pm EDT at https://www.facebook.com/diabetesconnections ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription below: Hello and welcome to Diabetes Connections In the News! I’m so glad you’re here! I’m Stacey Simms and each week I’ll share the top diabetes stories and headlines of the past seven days. Whether you’re joining me live on Facebook or watching or listening after, I’m here to get you up to speed quickly on what’s happening with diabetes technology, research, and our community. Since these are headlines and summaries, as always, you’ll find all the sources and links in the Facebook comments and in the show notes at d-c dot com. XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff” XX here’s what’s In The News this week… Couple of buzzy slides from Apple’s World Wide Developer’s Conference. First, this one from their WatchOS 8 update.. they didn’t use the words blood glucose.. but this slide was shown featuring the graphic “blood glucose highlights.” That likely means pulling the data from existing apps like Dexcom or Dario or One Drop, but there are always rumors about Apple releasing a glucose sensor of their own. We shall see – thanks to Nerdabetic for bringing this to our attention. Another diabetes shout out in this slide - same presentation - about time sensitive notifications. If you look closely you can see the Happy Bob app, which puts funny messages along with glucose notifications. XX Lots of news out of the recent Advanced Technology and Treatments in Diabetes Conference or ATTD. Dexcom showed this slide about their upcoming G7. We’ve reported on this a lot over the last two years, I’ll link up our previous episodes. but the new info includes: a 30 minute warm up time as opposed to 2 hours right now, and direct to watch capability. Direct to watch from Dexcom – that means you don’t need your phone to see your BG on the watch face anymore - was first announced in June of 2017 with the G5 and that proved more difficult to implement than expected. I’m talking to Dexcom for the podcast later this month so we’ll get a update on what this really means. The G7 is a smaller, all in one with sensor and transmitter applied together. It’s NOT FDA approved yet so there’s no timeline for release. Also, Dexcom put out a study that says people with type 2 who use basal insulin benefit from the use of CGM. The Mobile study took place over eight months. Those who used the CGM increase time in range and showed a full point drop in A1Cs on average. New data presented on Omnipod 5.. this is just an abstract – full study will be released later this month. This is Insulet’s hybrid closed loop system where it works with the Dexcom to keep a user within a targeted blood sugar range. They looked at children and adults ages 6-70 to measure safety of this new system. A1Cs came down, time in range went up, very low occurrence of hypoglycemia and researchers concluded it was safe. The Omnipod 5 operates in two modes, an automated mode and a manual mode. The system provides automatic insulin delivery with customizable glucose targets from 110 to 150, which can be adjusted by time of day. Omnipod 5 with Horizon is in front of the FDA right now so there’s no timeline on release. https://care.diabetesjournals.org/content/early/2021/05/21/dc21-0172 Also at ATTD - DarioHealth looking at outcomes from their highly personalized apps and system. Dario's study found that personalizing the clinical interventions in response to unique individual actions really helps. That’s opposed to systems with more generalized predictions. This study showed more frequency in blood sugar testing and monitoring in those who received an personalized intervention. https://www.prnewswire.com/il/news-releases/dariohealth-releases-study-demonstrating-the-impact-of-personalized-digital-interventions-to-improve-self-management-of-diabetes-301305650.html XX Early on here but a new closed loop system that knows when you’re eating is being tested – this was a small trial in adolescents and young adults. This is out of UVA – the same place that developed what became Tandem’s Control IQ. The researchers say teenagers are particularly prone to skipping meal boluses. This system, known right now as Rocket AP contains an Artificial intelligence bolus priming system that uses CGM to basically decide if you’ve eaten without bolusing. If it thinks you have, it will automatically dose. The median time in range after a bolused meal was 100% with the Rocket AP system and 93% with the control system, but was a corresponding 83% versus 53% after a meal without a bolus. Again, that’s 83% time in range when you completely forget your meal bolus. Bears watching. XX Up next.. a diabetes drug is approved for weight loss but first.. quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. The latest episode talks about scientists who knew they were onto something but needed to see things with their own eyes. How actually seeing something like a Kraken? Makes a huge difference. It also meant a name change for what some thought had only been a myth. And this actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts.. Back to the news… The FDA has approved the medication Wegovy (wee-GOH-vee), a higher dose of the diabetes drug semaglutide (semuh-GLU-tide), to be used as a weight management drug in patients with obesity. It’s the first drug for chronic weight management that has been approved by the FDA since 2014. It is injected under the skin once a week. People in the study lost an average of 12 percent of their body weight. People with type 2 diabetes lost 6 percent of their body weight. No reason given for the difference and there are some – intestinal side effects – but Wegovy is said to be safer than older weight loss drugs. https://www.healthline.com/health-news/fda-approves-popular-diabetes-medication-for-use-as-weight-loss-drug XX The power of peer support was shown at ATTD in a presentation by Kelly Close and Diatribe. Their survey showed engagement in the diabetes online community didn’t just make people feel better emotionally, which is great, but it also predicted better glycemic outcomes.. those most involved in the community increased their chance of having an A1C under 7. That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – we’re talking to the folks from Beta Bionics for the first time in a long time to get an update on the iLet pump. And the episode that’s out right now is all about what college students want you to know. Thanks and I’ll see you soon
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"There isn't a 'One Size Fits All'" - Diabetes in College and Beyond (with the College Diabetes Network)
06/08/2021
"There isn't a 'One Size Fits All'" - Diabetes in College and Beyond (with the College Diabetes Network)
Graduation season is here! Whether your young adult is just out of high school or completing a college degree, there’s a lot to consider when it comes to diabetes. We've got a roundtable discussion with a lot of frank talk about T1D in college. Recent graduate Shay Webb and college senior Haley Owens talk about everything from what to do when a professor doesn’t care about accommodations, to deciding how visible you want diabetes to be, to what they want parents to know. We're also joined by Anna Floreen Sabino of the . Webb and Owens are both 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 Below Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels, increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, lots of graduations this time of year and whether your young adult is just out of high school or completing their college degree. There's a lot to consider when it comes to diabetes.. Frank talk about T1Din college. Shay Webb 0:41 Sometimes it's the people you don't expect to pick up on things who actually picked up on it rather than the authoritative figures who you're expected to report to don't always want to pick up on it or want to actually have responsibility for it because they feel like if they have responsibility for it, that's their liability when in reality, it's your diseases your body. We just need your ally ship. Stacey Simms 1:06 That's Shay Webb she graduated last year Shay and Haley Owens, a college senior. Join me in a conversation about everything from what to do when a professor doesn't care about accommodations to deciding how visible you want diabetes to be to what parents need to know. 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. We are glad to have you along. You know we aim to educate and inspire about diabetes with a focus on people who use insulin. Most of you are very familiar with my family's story. My son was diagnosed with type one, right before he turned two he is now 16. My husband lives with type two diabetes. I do not have diabetes, and my daughter doesn't have diabetes. My daughter is 19. And she just finished her sophomore year of college. So she is home. She's been home for a couple of weeks now. And so we've moved through what I call the re entry phase. I used to call that to when they came from Camp, the re entry part of coming home. It's always an adjustment for everybody. But she's doing great. And you know, we're just starting now to think about college for Benny. He's done with his sophomore year of high school, and even a little early yet, but you know how it goes the pressure High School is is just bananas. So we've really tried to avoid that. But he has started taking a couple of those, you know pre ACT PSAT kind of things and thinking about the process. Some of you are scolding me saying it's never too early. But I think our attitude has always been he'll figure it out as we go. And of course, though, in the back of my mind all of these years has been diabetes at college. And I'm still trying not to think about it too much, frankly, I know he's gonna do well, I know we're gonna give him all the independence that he has needs he wants, but it still makes me a little bit nervous. So that's why I really excited to know about the college diabetes network and I plan to use all of the resources I possibly can. And to that end, we have a great roundtable for you this week, covering a lot of issues pertaining to school. This is a longer than usual interview, so I'm going to try to get right to it here. So you will hear from Haley Owens. She was diagnosed with type one at the age of nine. She's in her senior year at the University of Maryland, Baltimore County. She founded the college diabetes network chapter there in 2018. And she's been on the executive board ever since she's spending the summer at Camp Possibilities diabetes, sleepaway camp. It's her 10th year attending. She's actually the program director there now. You'll also hear from Shay Webb. She's lived with type one for almost 15 years. She's a recent graduate from University of North Carolina Wilmington. And she's got a Bachelor of Science in clinical research. She was the founding vice president of the CDN chapter at UNC Wilmington. And you'll also hear from Anna Floreen Sabino part of the leadership of CDN she lives with diabetes herself and like me as a graduate of Syracuse University, we like to work that in whenever we can. All right, all of that is coming up. But first Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most people carry fast acting sugar. And in the case of very low blood sugar why we carry emergency glucagon? There's a new option called Gvoke Hypopen the first auto injector to treat very low blood sugar. Gvoke Hypopen V is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. Haley and Shay and Anna, welcome to the show. I'm thrilled that you could all be here. Thanks for coming on. Thanks for having us, Stacey. Awesome. Thank you so much. Yeah, we're glad to be here. And uh, let me start with you as we look ahead Your word this very unusual for most school year is over, how is CDN doing? What are you talking about for the summer that looking ahead to the fall? Anna Floreen Sabino 5:10 Well, I think I mean, for those of you who don't know, college diabetes network is we are 10 years old now. And we are a nonprofit organization that is really focused on providing, you know, peer support and programs and resources for young adults with C one D. And I think the key there, especially this year is around peer support and maintaining as much connectivity despite the craziness of the last 18 months and more to come, I'm sure for college students especially. So CDN is an org is really focused on you know, how do we constantly stay in the loop on what's happening and making sure that we're really listening to our students, and our parents and all of their, you know, ecosystems that surrounds them to make sure that they're safe and equipped and prepped for what's to come, whether it's transitioning home, figuring out finals, interviewing for a first job over zoom, we're right there with them. And it's so excited to be overseeing this brand new fellowship program that both Shay and Haley who are joining us here today are a part of, and one tiny little silver lining to this whole thing is that this program wouldn't exist in the capacity that it does now, if we didn't have COVID. So it's been a joy to get to know the 20 fellows who are part of this program. And and hopefully it will continue. I'm curious, Stacey Simms 6:33 no, what do you mean, it wouldn't have happened like this would change. Anna Floreen Sabino 6:37 So traditionally, CDN has been very, very fortunate to bring several students couple dozen to the big diabetes, you know, national conferences each summer, the ADA Scientific Sessions, you know, at CES geared towards, you know, diabetes educators, as well as the friends for life conference in Orlando. However, this year, we decided, instead of having multiple different cohorts to combine the cohort into one and offer a weekly series of leadership development workshops, and have one cohort over the course of say seven months where they get to know each other, learn a bit about some professional development and skill building be matched with a mentor. So it's just a little bit more of a robust, kind of a more flow type of a program and less stagnant. But it's been wonderful to be able to build I think, further relationships with each of them, rather than just kind of a weekend long burst of information gathering and sharing. Before we jump into all our topics. Let's just do quick introduction, a little bit. Shay, tell Stacey Simms 7:37 me a little bit about CDN and your college experience you have graduated us here in North Carolina. Tell me about starting CDN, Shay Webb 7:45 I saw the disparity on my campus, and I really wanted to change things. So it was around my first year of college. And I say first year because I was actually an early college student. So my first official year of college that I noticed there's nothing on campus that really talks about the advocacy for diabetes. So I reached out to the liaison for CDN, or at least for our region of CDN at the time for lessons change. And I told him that I wanted to create a chapter. And honestly, it kind of stemmed from this idea because I had another friend, and she had just created this beating club. And I'm like, wouldn't it be cool if we combined all of our clubs and our ideas, and we had like this healthy, diabetic friendly potluck or something around the holidays, and I'm like, this would be a perfect event for CDN. And at the time, I didn't really know about it, but doing my research, I'm like, this is perfect. And then my mom, in addition was like when you get to college, you know, look into this stuff. Because it's out there, people just might not know about it. I reached out and I created my chapter of CDN, which is called dubs for diabetes. Because we are at UNC W, University of North Carolina Wilmington. And at first, it was really hard to find participation because when my chapter started, Hurricane Florence hit North Carolina. And that was very detrimental for a lot of people. So we started school year off and then we didn't come back until about three months later. So some time later, another student wanted to create a chapter but he didn't know that one had already been established. So he had a registered student organization. And I had a chapter. So we all came together and put our heads together. And that's for diabetes was born. Stacey Simms 9:33 And then Haley, tell me a little bit about your experience are you are graduating this year. Haley Owens 9:37 So I'm a senior and I think I'll be a senior for another another year. Yeah, so college for me was just really interesting. I mean, so I've had diabetes since I was little. So I entered my college experience, also as an individual living with type 1 diabetes, and I've been fortunate enough to have had the opportunity to connect with larger populations and community to us that also have this commonality of diabetes. And I've worked within the diabetes sector through a nonprofit. I've been really fortunate enough to have community on my side. But similar to Shay, I think I saw the disparities on my campus. And I saw, interestingly enough, I think it was the first year of my college experience I was walking around, and I just was noticing all of the people who had CGM Zhan and pumps on and I was like, This is so radical, because I would usually be the only one with these technologies visible. And people would say, Hey, here's a pager, what's that? You know, what kind of cool devices that so I was like, this is really awesome. And the inspiration for me was that I loved and I still love working with the diabetes community. I love working with summer camps for children with diabetes, and a part of one today as a, as a counselor, Shay Webb 10:51 I really wanted to bring that community aspect to the college campus as well for all of the students who were living with type one or any other form of diabetes, because that was a little bit of a nuance that I made to my chapter was that I said, I really would like to recognize all forms of diabetes, not just type one. That's interesting, what Haley was saying how, you know, she would see different people in CD ends and insulin pumps and everything on campus, because I still remember there was this girl who I was friends with for a while. And we had a mutual friend who threw a birthday party, like a birthday dinner one night, and I came and I was wearing a shirt and it didn't have sleeves or anything. So you could see my CGM really well. And she just sits down beside me. And she just starts rattling off. So it's not the freestyle, and I'm like, um, yay, it is. How do you know this? And then she just started talking to me about everything and how long she had it in her insulin pens. And I'm like, Are you serious? Like, this is not good. But this is like really dope right now. I'm super excited to see no idea. And I'm like, sitting there supersized. And they're like, What are you so happy about? And I'm like, Listen, I can't even explain it, because you won't get it. But it's super awesome. Stacey Simms 12:05 You know, it's funny. And Anna, let me bring you in on this. One of the topics that we had put aside to talk about kind of how diabetes can be invisible, right? how a lot of people don't see it. And yet, we've already started talking about how you spotted each other. Obviously, not everybody's walking around with a sleeveless shirt, and a CGM. When we talk about not being seen, I imagine that for most young people, it's not always a question of hiding those things. It's just or maybe it is, but I'd like to hear that for both of you all, but to me, it would be more of not announcing them. Does that make sense? Anna Floreen Sabino 12:38 Absolutely. And I think one of the things that and I've had type 1 diabetes for over 30 years now. So I think both of us eat. But I think one of the things that I've realized even as I have, I don't want to say the word aged but but gotten older, gone through college grad school started a family is that the burden of self advocacy and the invisible load that people living with a chronic illness, like type 1 diabetes is never ending. And, you know, for parents who are listening who have those in high school, Hi, I'm Stacy. But it's constantly there. I mean, just a few seconds ago, my insulin pump was was beeping, I was on mute, but you couldn't hear it. And I've got a low battery and low reservoir. And although I'm going to continue on this podcast, and you know, continue out my day, it's a reminder that I am different, and I have to pay attention to this or else and it's that it's the weight that is there, the invisible. There it is, again, the invisible worry that if I don't do this, then that and it's a reminder that you are being reminded to, you know, take care of behaviors that are both dependent on your acute and long term success. And I think for you know, young adults, especially entering college, a lot of that burden is now for the first time on the student themselves. And especially when you're constantly navigating, meeting new people, and many of the students that either start chapters are coming to college, where everyone around them just knows, you know, they've been in a very similar K through 12 school system, or they, you know, they've been the kid with with the pump at school, where it's just their best friends know, and I think I realized when I was a freshman, that it takes years to build friendship and a long time and it's not like you're gonna offload your life about diabetes and all the teeny weeny details that go with it. It is really isolating, especially now with with COVID to constantly kind of pack and unpack the invisibility of diabetes like all day, every day. So my advice for parents listening is to really start having those conversations in high school, you know, not two to three months before you're going off to school. ask them some questions talk about how you're feeling. Talk about how you're going to have those conversations. It's really, really hard. But I think it's so important to just be honest. How can I help you? What do you need for me? I'm here if you need anything, because I think it's the person living with diabetes is just there's so much weight physically and emotionally on their shoulders. Stacey Simms 15:18 She let me go to you on that. When you're hearing her say have those conversations in high school? Is that what you would tell teenagers parents now? Right back to Shay and Haley answering that question. But first Diabetes Connections is brought to you by Dario Health. Bottom line, you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us with that and that he understands the plan has to change. As Benny gets older, you want that kind of support. So take your diabetes management to the next level with Daario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one c within three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my dario.com forward slash diabetes dash connections for more proven results and for information about the plan. Now back to Shay answering my questions about whether she'd recommend having conversations about advocacy with high schoolers. Shay Webb 16:27 I would and I wouldn't at the same time. And I say that the say as Anna and Haley No, I was taught at a really young age, I had to start having those conversations when I was in elementary school, I would be that fourth grader. You know, my mom would stand behind me and I go up and tell them okay, this is my insulin pump. Okay, this is what a blood sugar kit is. And it's like I tried it felt scripted at first, like, Okay, this is what you say, this is what you show. But as you keep on growing and maturing and getting older and getting exposed more, it'll flow like clockwork, in a way. So the by the time you get to college, you get around your professors, you get around your arrays, you're not as intimidated, because you've done it for so long. And I also think the you know, the younger you started, the more comfortable you are when you start the better. And that's to say even though you're doing that, and you're advocating you're telling people what you need, you're also influencing someone else who's watching you from the sidelines. And you don't even know it half the time until later. Sometimes you don't ever know it. But like analysts saying diabetes can be really hard to unpack sometimes having someone there as that model as that guide to say, Okay, I guess this is acceptable to do especially growing up as a teenager as a preteen where you have all these peer pressures, or this doesn't look cool, like this looks cool. Be that model. You don't have to exactly be the extrovert or the person who's in front of everybody. But just find ways that you feel comfortable to express your advocacy in different ways that you can get your needs across. And if you get yours across most likely it's going to help someone down the line who hasn't even thought of those things yet. Stacey Simms 18:09 Haley, I'm going to ask a slightly different question. As Anna alluded, my son is a sophomore in high school, he is 16. He was diagnosed he was two. So he is very independent. He is very used...
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In the News: Could a CGM measure ketones? D-Tech in the hospital and more...
06/04/2021
In the News: Could a CGM measure ketones? D-Tech in the hospital and more...
It's "In the News..." the only LIVE diabetes newscast! Give us five minutes and we'll tell you about: ATTD begins - what tech studies will be released? New info for hospital visits with diabetes tech Could a CGM also measure ketones? Another milestone for Tidepool T1D driver in the Indy 500 Join Stacey live on Facebook each Wednesday at 4:30pm EDT https://www.facebook.com/diabetesconnections Episode Transcription below ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Hello and welcome to Diabetes Connections In the News! I’m so glad you’re here! I’m Stacey Simms and each week I’ll share the top diabetes stories and headlines of the past seven days. Whether you’re joining me live on Facebook or watching or listening after, I’m here to get you up to speed quickly on what’s happening with diabetes technology, research, and a few fun stories from our community. Since these are headlines and summaries, as always, you’ll find all the sources and links in the Facebook comments and in the show notes at d-c dot com. XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff” XX here’s what’s In The News this week… First, the annual A-T-T-D conference is going on right now. That’s the Advanced Technologies and Treatments for Diabetes Conference. As it just started, we’re probably going to get a lot more info from the tech companies in the next few days. Stay tuned on social for big breakthroughs and announcements and we’ll wrap it up here next week. XX Good News if you need to be in the hospital for some reason! The American Academy of Clinical Endocrinology has new guidelines that cover use of continuous glucose monitors, pumps, connected pens, automated insulin delivery systems, telemedicine technologies, and smartphone apps. They also address safety considerations and special situations such as hospitalization. That’s really important because until now there has been NO official recommendation about letting patients handle diabetes management while in the hospital. New AACE guidelines https://www.medscape.com/viewarticle/952127 XX Could a CGM also continuously measure Ketones? JDRF is supporting projects looking to develop that kind of device. Here’s what they say in their request for letters of intent: Diabetic ketoacidosis (DKA) is a dangerous acute complication of T1D that is insufficiently addressed or even sometimes exacerbated by current therapeutic options. To fill this gap, JDRF invites applications to develop continuous ketone monitor or C-K-M functionality in continuous glucose monitor (CGM) devices. As I said, this is a request so we’re at the very beginning of this but WOW… that would sure beat peeing on a stick. CGM and Ketone Monitor https://grantcenter.jdrf.org/rfa/development-of-cgms-with-continuous-ketone-monitoring-functionality-for-dka-prevention-in-t1d/ XX Follow up from last week – an FDA advisory committee gave the go ahead for the first drug shown to prevent type 1 diabetes. Teplizumab will now go to the full FDA and could be approved in early July. Teplizumab isn’t something you do at home.. it’s injections given over two weeks in an outpatient setting. The FDA doesn’t automatically follow the advisory committee recommendations and may ask for more info or research. We’ll keep following. Teplizumab follow up https://www.healthline.com/diabetesmine/teplizumab-new-drug-to-prevent-type-1-diabetes XX A new National Institutes of Health study aims to improve gestational diabetes screening and diagnosis by better understanding blood glucose levels throughout pregnancy During pregnancy there are changes in glucose metabolism but the details of these changes are unknown. The Glycemic Observation and Metabolic Outcomes in Mothers and Offspring study, or GO MOMs – will use CGMs to study more than 2000 women in their first trimester. This is a follow up study to HAPO – which isn’t quite as fun a name.. which looked at high blood sugar during pregnancy. Gestational diabetes BG study https://www.nih.gov/news-events/news-releases/nih-launches-study-determine-best-time-gestational-diabetes-screening XX Tidepool adds Control IQ to their long list of viewable data. If you use Tandem’s t:slim X2 pump with Control-IQ™ technology, you can now view all of your data, including all of the unique hybrid closed loop events in your Tidepool account. Tidepool is awaiting FDA approval on their own Loop system and they also launched a unique – and in my opinion - much needed period project to start tracking how menstrual cycles affect blood sugar in in people with diabetes. https://www.tidepool.org/blog/tandem-control-iq-technology-and-tidepool-officially-supported Do you have a diabetes tattoo? News on who’s looking for it coming up but first.. quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. The latest episode talks about scientists who knew they were onto something but needed to see things with their own eyes. How actually seeing something like a Kraken? Makes a huge difference. It also meant a name change for what some thought had only been a myth. And this actually relates to diabetes! Listen to Inside the Breakthrough wherever you listen to podcasts.. Back to the news… Indy driver Conor Daly led the most laps in the recent Indy 500 but another car’s crash took him out of the race. Daly lives with type 1 – he was diagnosed at age 14. Another driver left his pit before the 4th tire was secure – when it rocketed around the track, it crashed into Daly’s car. He wasn’t hurt but it took him out of the lead. Conor drives the No 20 Mannkind Chevrolet – the makers of Affezza are his sponsor. https://www.indystar.com/story/sports/motor/2021/05/30/conor-daly-finishes-thirteeth-indy-500-after-tire-hits-car/5038239001/ XX From this week’s podcast episode! If you have a diabetes tattoo Banting House wants to see it! I spoke to the curator of the museum, know as the birthplace of insulin – it’s where Dr. Frederick Banting woke up with the idea that led to that great discovery. They are starting an exhibit “of ink and insulin” and they want to see your diabetes related tattoos. Of course, that link – and all the others in the Facebook comments and in the show notes at d-c dot com https://bit.ly/DiabetesCxns383 https://bantinghousenhs.ca/2020/01/16/of-ink-and-insulin/ That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – you’ll hear from college students ready to graduate or already there. What they want young adults -and their parents – to keep in mind. Thanks and I’ll see you then!
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"From the Beaker to the Bedside" - Banting House Museum is the Birthplace of Insulin
06/01/2021
"From the Beaker to the Bedside" - Banting House Museum is the Birthplace of Insulin
2021 marks 100 years since the discovery of insulin and we could think of no better place to hear the story of how it happened than from the folks at Banting House. That's literally the house where Sir Frederick Banting woke up with the idea that led to this life saving discovery. Curator Grant Maltman shares stories and takes us on a bit of an audio tour of the House. He explains how Dr. Banting got started, made the discovery (with help of course) and what the museum is doing to mark the occasion. It's a very interactive museum with everything from a letter writing campaign to Dr. Banting that's still going on, to a display of diabetes tattoos from around the world. Stacey also shares her idea to mark 100 years of insulin - with your help! 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 below: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health: Manage your blood glucose levels, increase your possibilities; by Gvoke HypoPen: the first premixed auto injector for very low blood sugar; and by Dexcom: take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, we're talking to the curator of Banting House, which is known as the birthplace of insulin. It's literally the house where Sir Frederick Banting woke up with the idea that led to this life-saving discovery. Grant Maltman 0:40 We're celebrating the 100th anniversary of the discovery of insulin. 100 years later, we have better insulin, what we still don't have is anything better than insulin. And that's what makes this place so important. It's why people come here, you know, we hear the words, like pilgrimage, we have people refer to us as a "Diabetes Mecca." Stacey Simms 1:00 Grant Maltman shares stories and takes us on a bit of an audio tour of the house. We're also cooking up an idea to mark this century of insulin anniversary, but I'm going to need your help. 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, always so glad to have you here we aim to educate and inspire about diabetes with a focus on people who use insulin, and Banting House is one of those places I would really like to visit. Hey, everybody, I'm Stacey Simms. I am your host, my son was diagnosed more than 14 years ago with Type One and my husband lives with Type Two. And you know, obviously, insulin is incredibly important to us and everybody listening to the show, as you'll hear people travelled to the museum, not only to learn more about history, but also in the hopes that they will be inspired, with a bit of an aha moment, like Dr. Banting was. The curator, Grant Maltman, will take us through more of the exhibits and the history. I'm not going to do that here. But I do want to let you know, there is a brief YouTube video that I've put out that goes along with this episode, you're gonna hear almost at the end of the interview, Grant turns the camera on and takes us through part of the exhibit. So you can listen to that. And we really get the idea, but I thought you might also want to see it. And so that's on YouTube as well. I will link that up in the episode. And it's always a good way to mention that we have links and information for every episode at Diabetes-connections.com, in addition to the show notes in whatever podcast app you may be listening to, but some of those apps don't really show the notes very well. And they don't hyperlink and all that good stuff. So you can always go to Diabetes-connections.com. And please stick around after the interview. I want to run an idea by you for kind of our own way on the show here, for you to take part of marking 100 years since Dr. Banting's discovery. So stick around for that. But first Diabetes Connections is brought to you by Dario Health. And over the years I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. And that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny. The Dario diabetes success plan is all about you, all the strips and lancets you need delivered to your door, one-on- -one coaching so you can meet your milestones, weekly insights into your trends, with suggestions on how to succeed. Get the diabetes management plan that works with you and for you. Dario's published studies demonstrate high impact clinical results, find out more. Go to mydario.com/diabetes-connections. Grant, thanks so much for joining me. I'm really interested to hear more about your story and share about the Banting House. Thanks for being here today. Grant Maltman 3:54 Oh, my pleasure. This is going to be fun. Stacey Simms 3:56 Yeah. All right. Well, let's just start with the, you know, very generalities. Can you tell you what Banting House is all about? Grant Maltman 4:02 Well, Banting House since 1923, has been known as the birthplace of insulin. It's Frederick Banting's former home where he came up with the idea that led to the discovery of insulin. It was purchased by Diabetes Canada in 1981, declared a National Historic Site of Canada in 1997, and are now full museum open to the public. Stacey Simms 4:24 When you say the birthplace of insulin, tell me the story. What does that mean? Grant Maltman 4:28 Well, this is always history. So everyone knows or you know, we'd like to help everyone know, that the discovery of insulin occurred at the University of Toronto during the summer of 1921. Like every great story, that's neither the beginning nor the end. And so the origin story for insulin in this context anyways, is this house. So Frederick Banting is a struggling general practitioner in London, Ontario. After the First World War, he couldn't get a job in Toronto as a house surgeon. So he came here to set up a practice and this wasn't an "open it and they will come" scenario. He does everything wrong, he moves to a city where he doesn't know anyone. He doesn't take over a retire doctor's office. His office hours are terrible, 1-3 in the afternoon, seven to eight in the evening, his location isn't a great spot to set up as a private practice, it's not a high traffic area. You could put your name on the front window, but there's big silver Maple up front, and no one's going to see it. So he's literally 0 for 4, or even the phonebook. He failed there too, the phone book was printed in April, and he doesn't move here until June. So he opens his practice on the first of July 1920. His first patient arrives 28 days later. And according to his memoir, it's not even a real medical problem in 1920. In Ontario, we're still under the Prohibition Act. And according to Banting's memoir, anyways, he writes an illegal alcohol prescription, illegal alcohol sale. So our great Canadian hero starts off his career as a modern day bootlegger. While the practice slowly starts to grow, it's not enough to pay his bills. And so he takes a job at Western University at the Medical School where he's literally a day or two ahead of the students, he takes this opportunity because of the income. Each lab that he does is $2 an hour, which is great, considering his entire July income was $6. So three labs in the early fall of 1920. He's gonna equal his entire July income, things are progressing well. And towards the end of October, he's asked to prepare a lecture on the subject of the pancreas and diabetes. And one of the the myths around the discouraged insulin is that Dr. Banting was on this lifelong quest to find a cure for this disease because a 14 year old boy or girl, friend or cousin, depending on his telling his story, the key is, this, it's a young child, had diabetes, that Banting knew. This child died, "Okay, well, I'm going to grow up, I'm going to go to medical school and find a treatment for diabetes," not the case at all. He's scared to death because he has to give a lecture on a subject he knows very little about, he had never treated the patient with diabetes, he knew that the only treatment was, was the Allen diet was the standard diet, the starvation diet. Once you're on that diet, your life expectancy is about six months to two years. So we can't do much of a lecture on four or five senses. So on the 30th of October, he reads everything he can and prepares his lecture. And then that evening, when he goes to bed, he takes to bed his surgical journal. He always likes to read himself to sleep. And he opens up this journal by Moses Baron. And it's a survey article on diabetes and diabetes research and what a great opportunity to read this, perhaps there's something in this that I can incorporate into my lecture. And so he reads the article, turns out the light and goes to sleep at 2am. After a night of restless sleep, he rises for bed and puts to paper 25 words that will change course of diabetes research and diabetes history. It was a restless night of restless sleep. "After the lecture and the article been chasing each other in my mind for some time, the idea occurred to me. I got up, I wrote down, I couldn't stop thinking about it. Those 25 words leaked that first crude farm insulin 10 months later, after only about 12 weeks of experiments." Stacey Simms 8:16 So I had never heard that he was interested in this as a little, you know, as a young kid, but I had heard about him, you know, waking up in the middle of the night. So he wakes up and what he writes isn't, you know, "We're gonna change the course of history and I have this idea of how to, you know, discover insulin and administer it to people." He basically writes out what you said. Grant Maltman 8:34 What he writes is, it's a 25 word hypothesis. (Inaudible) who came through here says it's a modern day post-it note. He writes "diabetes ligate pancreatic ducts of dog keep dogs alive to a senile degenerate leaving islets. Try to isolate internal secretion of these and relief glycosuria." So those 25 words got him lab space, a research assistant, and a Nobel Prize. (Muffled) years to the day of writing it down. And one of the great ironies, co-discoverer of insulin can't even spell diabetes correctly, he's a terrible speller. But as a physician, he's got great penmanship. So everything we can read, which is great for the public record. Stacey Simms 9:17 Wow. What does he do after that? Does he go and give the lecture as planned? I, you know, as you said, it wasn't overnight that things changed. This was the beginning. But what happens when he gives the lecture? Does he include that hypothesis? Grant Maltman 9:29 We don't know that. We do know that he was pretty excited and spoke to a couple of colleagues here in town. He literally, Banting can sometimes be like a bull in a china shop. It's like, hey, I've got this, let's go. But unfortunately, Western's medical school, the number two school, was still under construction. And we see we just didn't have the facilities or expertise here. When he's speaking to his colleagues at Western and one of his former classmates who's living here in town, they encourage him to go back to his alma mater. He's going to be in Toronto in mid-November anyways, so why not go speak with Professor John McLeod, head of the physiology department, a leading expert in the field of carbohydrate metabolism, and go and run your idea by him and and that's how things got started. Stacey Simms 10:16 When we're talking about Banting House, this is the house where he woke up and wrote that down. What do people see when they come through? You know, I haven't had the opportunity yet to travel there. It's definitely on my list. Grant Maltman 10:28 It's a really interesting museum. We often catch people by surprise because you say Banting Museum, the first thing you think of is insulin, understandably. I'm doing this podcast from the bedroom where it occurred right now, and it's our probably most important room in the gallery, but the museum is a biographical museum, letting people know who he was and what he was about when he lived here. He actually only used three rooms in the house because the people he bought the home from, their new home wasn't ready yet. He's single, doesn't need the whole place. So he says, why don't you stay? This way, you know, they can pay the water bills and electricity bills, so, and ended up feeding him and bringing patients as well. So under our designation, we have to restore the three rooms that he did occupy. So as I said, I'm in the bedroom where we restored right back to the original wallpaper. His office is set up, as well as a small apothecary. So you get to understand what it was like to be a 1920s private practice for a physician. The rest of the house we tell his life story. So, we feature his art, he was a pretty good painter, very good friends with Canada's most famous painters and export the Group of Seven. Art was a, painting was a hobby, started here in London. One patient, 28 days, gives you a lot of free time. And so he started up like everything else, off to a bad start, buys watercolor brushes, which are tiny, thick oil paints and tries drawing pictures from magazines, sort of. They're not very good. In fact, we have the one that was donated to us a few years back, is the only surviving painting from 1920. And it's done on cardboard from the laundromat because he couldn't afford artboard. But then we have one of his latest from 1937, was a wonderful image of the Quebec landscape which really shows his growth as an artist. He, we have a an exhibit gallery that covers his career in the First World War. He's a decorated war hero, Military Cross winner from September of 1918. During the last 100 days, he's wounded in the arm and refuses to evacuate to the rear. As for his actions that day, he's awarded the Military Cross, which is the second highest honor in the British Empire. And so three years before they discover insulin, Banting is actually a decorated war hero. But as Canadians we don't know this, because insulin casts a pretty long shadow. We cover his career in the Second World War, where he was a leading scientist throughout allied war effort, which actually has a Carolina connection. Regression chambers and the Frank's flying suit, the G suit for fighter pilots. Banting was one of the leading coordinators for that, the Frank's flying suit actually comes out of the University of Toronto, we of course cover the discovery of insulin from start to finish with a couple of really interesting exhibitions there. And we're also keepers here of the flavorful... Stacey Simms 13:23 We'll get back to Grant just a moment so he can explain all about that. But first, Diabetes Connections is brought to you by Gvoke HypoPen and our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or just some juice, but a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon. It is Gvoke HypoPen, Gvoke HypoPen is pre-mixed and ready to go with no visible needle. You pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more, go to Diabetes-connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvokeglucagon.com/risk. Now back to Grant explaining one of the most popular and significant exhibits at Banting House. Grant Maltman 14:20 Now the Flame of Hope was lit on July 7, 1989 by the Queen Mother. So the Queen of Englandy, our current Queen Elizabeth the 2nd's mom and this claim stays lit until a cure for diabetes is found. And the doctor or team of doctors, no matter where in the world they are, when that cure is found, they are to be brought to London to extinguish the claim and also open up a time capsule that the International Diabetes Federation has left here in our property. So it's a pretty all-encompassing story, not only on Banting's life but in the discovery of insulin, but also the legacy of hope for a cure. Stacey Simms 14:53 Yeah, I'm curious when was that time capsule created? Grant Maltman 14:57 The time capsule was created in 1991, as part of Banting's 100th birthday celebrations, it was created by the Youth Delegates for the International Diabetes Federation. So they met, the Congress that year was in Washington, DC. And all these delegates were asked to bring something to create this time capsule. And then as we understand it, the next, we have this time capsule created, where was it to be housed? And as we were told, the initial thought was, it would go back to Europe where the IDF headquarters were, but the Youth Delegates objected to that and said, "No, there's a flame burning for us in Canada. And when that flame is extinguished, that means we're free from this disease. So whoever frees us should be the ones to open it." And so that's how we ended up with it. And we're very honored to be the caretakers of that. Stacey Simms 15:51 Another thing that I've seen just looking, you know, virtually at the museum, another thing I wanted to ask you about was the dear Dr. Banting. I don't want to call it an exhibit, but maybe it is. And that's something that people can do virtually still. Right? Grant Maltman 16:04 That's correct. So this is an exhibit we created, gosh, just under 10 years ago now. And it turned into something we never expected at all. It set, it started off. It's in Dr. Banting's bedroom. And this is a very important room for people. We have people from around the world, what, 85 countries a year, everything from visiting scientists to people affected by diabetes and sort of general tourists. And the room's a very emotional room. Everybody wants to sneak a touch with Dr. Banting's bed and then you know, we tell them it's okay. And we get their pictures taken with it. And we were thinking about, it's about three quarters away through the tour and and we're just trying to capture some stats where people were from, what did they think of the tour? What do they think the museum, but to our surprise, the initial letters, weren't, you know, "Tour guide talk too long," or "I really liked the wallpaper." It's in, which is what I thought we would get, a sneaky guest book. But instead it turned into, "Dear Dr. Banting, thank you for giving me an opportunity to lead a fulfilling life to my family," or "Dear Dr. Banting, this is the site of the greatest moment for all children with Type One, my daughter diagnosed last week at age two deserves to live. Thank you for your gift. They're written in many languages, as I said, medical students and researchers talk about being inspired. We had, you know, as I say some of the world's leading physicians and diabetes specialists around the world talk about how being here makes them a better physician, researcher, and advocate for their patients and really speaks to the importance of place. And the letters are no different than the letters Banting received when he was alive and in the 20s and 30s. And we have a wonderful collection of those and, and we do feature them now on an online exhibit called Dear Dr. Banting on our website. But I think what's really interesting is this sense of community that these letters create, often we'll have people you know, I don't want to write a letter, but they'll go to read the ones that we have stacked. And of course we get too close and they all fall and all sudden everyone panics, "Oh, I've wrecked the exhibit." And as they pick them up, you can't...
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In the News: FDA considers a T1D prevention drug, new sensor approved and more..
05/28/2021
In the News: FDA considers a T1D prevention drug, new sensor approved and more..
It's "In the News..." the only LIVE diabetes newscast! Give us five minutes and we'll tell you about: European approval for Medtronic's new no-calibration sensor FDA considers a drug to prevent T1D New info about gestational diabetes A potential type 1 vaccine moves forward Telehealth update (and what's next after COVID) Join Stacey live on Facebook every Wednesday and watch "In the News..." Live! https://www.facebook.com/diabetesconnections ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription and links below: May 26, 2021 FB LIVE: Starting soon slide Hi, and welcome to Diabetes Connections In the News! A short weekly newscast full of the top diabetes stories and headlines of the past week. I’m Stacey Simms & whether you’re joining me live on Facebook or watching or listening after, I’m here to get you up to speed quickly XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff” In The News this week.. XX Bit of breaking technology news today as Medtronic gets European approval for its Guardian 4 sensor. This is their newest sensor which requires no fingersticks for calibration or diabetes treatment decisions. Medtronic says they’ll start integrating this sensor into the 780G pump and InPen offerings in the fall. No word on a timeline for US approval for the Guardian 4 sensor. MedT Guardian 4: https://investorrelations.medtronic.com/news-releases/news-release-details/medtronic-secures-two-ce-mark-approvals-guardian-4-sensor-inpen XX FDA advisory committee may give more information and feedback on the first treatment to delay or even prevent type 1 diabetes as early as tomorrow. They’ll decide if Teplizumab is safe and effective. This is not full FDA approval, but it’s another step toward releasing what is an IV drug, given as a single 14-day course of infusions. If you’ve heard us about the TrialNet studies on this on the podcast over the last few years.. that’s what most of the evidence is coming from. Their studies showed a relative 59% reduction in risk for developing T1D and a delay of diagnosis of 2 to 3 years. https://www.medpagetoday.com/endocrinology/type1diabetes/92784 XX Another new treatment for type 1 diabetes moves into clinical studies.. this is a vaccine that looks like it prevents the destruction of insulin producing cells in the pancreas. DiabetesMine has an excellent report on this and we’ll link that up here so you can read the whole thing. But the Swedish biotech company Diamyd has been working on this immunotherapy vaccine for two decades, including a study where they injected it into the lymph nodes of the study participants. Their will start this year in Europe and the US and will include more than 300 children and young adults recently diagnosed with T1D. Diamyd vaccine: XX A new long term study shows that women diagnosed with gestational diabetes are more prone to type 2 and type 1 diabetes later in life. It’s been known for some time that gestational diabetes is linked to the risk of type 2.. but these researchers say auto-antibody testing should be considered in order to have a better understanding of all the risks In this study, 50% of women who experience gestational diabetes go on to develop type-2 diabetes later in life and almost six percent developed type-1 diabetes. This 23 year long study was presented at the European Congress of Endocrinology Gestational diabetes increases risk for T2 and T1 More info to back up what a lot of patients have been saying for a long time. If an endocrinologist is negative or belittling, people stop listening to them and even stop going for check ups and prescriptions. University of Florida Diabetes Institute polled their minority communities recently and found that the main challenge is support from their endo. Or lack of support These researchers looked at people who missed two or more endocrinology appointments, have experienced diabetes-related complications in the past year and receive primary care at a federally qualified health center. The study found when people from minority or low-income groups report negative and belittling interactions with their endocrinologist, they stop going to appointments. These researchers say they want to look at implicit bias in care and do something about it. Endo attitudes: Telemedicine – no surprise – skyrocketed for people with type 1. From less than 1% before the COVID-19 pandemic to about 95% in April 2020, according to study data. In March 2020, clinics in the T1D Exchange Quality Improvement Collaborative began attending virtual meetings to share progress and best practices with the shift to telemedicine. Researchers collected the monthly number of type 1 diabetes visits and HbA1c values collected from a subset of 11 pediatric clinics and two adult clinics from December 2019 to August 2020. The researchers noted the proportion of telemedicine visits varied widely at each clinic. About 62% of clinics performed both video and phone visits. Zoom was the most popular platform, used by 62% of centers. More than 95% of clinics also used CareLink, t:connect, Clarity or Glooko to view diabetes data remotely. Most centers had diabetes educators, registered dietitians and social workers participating in telemedicine. However, only 15% of clinics said a psychologist participated in telemedicine. All clinics provided continuous glucose monitor training through telemedicine and 70% provided insulin pump training. Telemedicine but first.. quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. The latest episode talks about when a belief thought to be settled science turns out to be wrong. And to illustrate that point they talk about the horse poop crisis of New York City. It was real and it resolved in a way no one expected. Listen to Inside the Breakthrough wherever you listen to podcasts.. Can a game – with competition – really help people live a more healthy lifestyle? A one year trial with people with type 2 diabetes tracks steps and game elements such as points and levels. Some also received social support from a family member or friend. A third group just got the tracking device. Everyone in the study lost weight and lowered their A1Cs but those who didn’t play the game took fewer steps and tracked less activity overall. A lot of gamified apps have come and gone in the diabetes space.. these researchers say the competitive aspect may be the key. Game study for T2 https://www.mobihealthnews.com/news/gamification-step-count-leads-more-activity-diabetes-focused-study That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – we’re talking to the folks from Banting House, the birthplace of insulin. Thanks and I’ll see you then!
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Bigfoot Biomedical's Unity Gets FDA Approval - CEO Jeffrey Brewer
05/25/2021
Bigfoot Biomedical's Unity Gets FDA Approval - CEO Jeffrey Brewer
Big news for Bigfoot Biomedical as the US FDA approves their insulin pen cap system called Unity – which also includes a CGM and an app. CEO Jeffrey Brewer explains what Unity is all about, gives us an update on Bigfoot’s pump system and opens up about his family’s story – his son was diagnosed almost 20 years ago. Plus, in Stacey's first in-person diabetes meetup since COVID, she observed something very interesting about the newer families. 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 below: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system. Announcer 0:24 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:29 This week, big news from Bigfoot - FDA approval for their insulin pen cap system called Unity, which also includes a CGM and an app. CEO Jeffrey Brewer says their bundle approach is a bit like Apple’s Jeffrey Brewer 0:42 Apple takes a bunch of different pieces, some of which they licensed and some of which they make and integrates them into the most usable package that actually is going to be accessible to the most people. That's the way we think about it as well. Stacey Simms 0:56 Brewer shares what Unity is all about gives us an update on Bigfoot’s pump system and opens up about his family story. His son was diagnosed almost 20 years ago, plus my first in person diabetes meetup since COVID, where I got good news beyond just seeing my people. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. And when I started Diabetes Connections in the summer of 2015 this week's guest Jeffrey Brewer was my second guest, it is hard to describe what the diabetes technology situation was six years ago. If you were around then you probably remember especially this podcast audience, you know, I tried to talk about it, as I mentioned in the teaser, had a meetup last week with some local parents, which was fantastic. And I'll tell you more about that later. And a mom of a child diagnosed in January of this year asked me what DIY was all about. she'd heard about loop he heard about do it yourself. She wasn't quite sure what it was all about. So that was a long and winding conversation. If you are brand new, and you want to learn more, I recommend searching out the we are not waiting episodes of this podcast. And you can easily search those up at Diabetes connections.com. There's a search box on the upper right. It's a very robust search of our almost 400 episodes now. And you can search we are not waiting as all one word. I've put that in all of those kind of DIY open APS CGM in the cloud. You know all of those types of episodes. I know that six years ago, this pen cap system is not the Bigfoot FDA approval many of us thought would come through First, if you've been following this story for a while Bigfoot was founded in 2014. It was under a different name. It got the Bigfoot name in 2015. But it was founded by a small group of dads of children with type 1 diabetes, including Bryan Mazlish, who got that nickname Bigfoot via reporter looking for the elusive person Bryan who had developed a do it yourself closed loop which his wife and son with type one were using, and the initial headlines for Bigfoot, were all about bringing that closed loop system to market you can go back and see their initial funding press releases, which say things like you know, “the funding will support final development activities for Bigfoot’s Smart loop, automated insulin delivery service, the world's first Internet of Things medical device system delivered as a monthly service.” Bigfoot Unity, which is what we're talking about today is going to launch as that monthly service. It's such a great idea to cut down on the complexity, it's going to help so many people on multiple daily injections, but I know that this podcast audience leans very much into the pump closed loop give me all the tech news group. And I think it's important to acknowledge that that said, My guest is Bigfoot CEO Jeffrey Brewer. His son was diagnosed with type one in 2002 and as the former CEO of JDRF. Brewer led the artificial pancreas project there. In life before diabetes, Brewer founded and led early.com startups including city search and goto.com. We will find out all about Bigfoot Unity in just a moment but first Diabetes Connections is brought to you by Gvoke Hypopen and you know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out there are a lot of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar. Gvoke Hypopen is the first auto injector to treat very low blood sugar fever. Gvoke Hypopen is pre mixed and ready to go with no visible needle. before Gvoke, people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke Glucagon dot com slash risk. Jeffrey, thank you so much for joining me, I really appreciate it. Jeffrey Brewer 5:05 Thanks for having me. Glad to be here. Stacey Simms 5:07 So I looked back at my notes, you were my second guest on Diabetes Connections back in the summer of 2015, talking about the big plans for Bigfoot and holistic systems, and then lots of things that you said at the time you couldn't really talk too much about. And now here we are. So first of all, thanks for being my guest way back when when, you know, probably have three people listening, I really appreciate that. Jeffrey Brewer 5:29 Well, thank you, and thanks for sticking with us maybe took us a little bit longer than I had hoped. But we're finally here to be able to offer something to people with diabetes, that we hope it's going to improve life and make it a little easier. Stacey Simms 5:43 Definitely. Well, let's talk about that. So we're talking about Bigfoot Unity, would you mind kind of going through who it's for what it does, this is a system that is going to help people who are on multiple daily injections. So what is big for Unity? Jeffrey Brewer 5:57 Yeah, so as you know, had Bigfoot developing a range of solutions to help people whose lives are dependent upon insulin to live safely and, and hopefully better lives. We are in this journey, focusing first on multiple daily injections, basically, intensive insulin therapy, once a day, have a basal insulin, and then given shots at mealtimes, or for corrections of rapid acting insulin, that particular therapy, which about 3 million people in the United States today do on a daily basis, about half people with type two diabetes, about half people with type one diabetes, but it's really the same therapy, we have developed a system that we believe solves a lot of the problems that therapy has, when it comes to the ability of people to determine the right dose for themselves on an ongoing basis, and also for health care providers to support them in doing so over a long period of time. I Stacey Simms 6:53 totally understand because years ago, my son wanted to take an insulin pump break, he has used an insulin pump, since he was two, really six months after diagnosis, we got him on a pump. And we were so frustrated. Because not only did we have to do all the math manually that the insulin pump had done, there wasn't. And this was really before, there were lots of apps and things, there was no way to do all the stuff that the pump does in terms of insulin on board, and that kind of thing. So I assume that those are just a few of the features that Unity will provide Jeffrey Brewer 7:23 some of the things that a pump does BigfootUnity will help to support your right that for people taking shots, it's mostly a glucometer, a piece of paper with some instructions and a couple of insulin pens. There isn't a lot of technology involved in those people's lives right now. And what we've done is develop a package of technologies that includes some devices, and some software that is knitted together for ease of use, to make life convenient for the person to first of all, be prescribed the therapy to be trained how to use the therapy easily and safely, and then to over time be supported by a healthcare provider who has the responsibility of supporting many of these patients, we are bringing technology to a population of people who I think have been largely overlooked, because most of the innovations have been focused on pumps. And that's really been focused on type one and also focused on very highly engaged people with diabetes that frankly, had to do a lot more in order to support the therapy and seen by doctors who are very excited about the technology. But not everybody sees a clinician like that. And not everybody wants to put everything into their insulin therapy that maybe a pump would require. Stacey Simms 8:42 So take me through a little bit of it if you could, when I looked at it, I was kind of making notes that I wrote white cap black cap. So the white cap is for the fast acting and that gives you a dose, like a pump would say here's the suggested dose. Jeffrey Brewer 8:56 Sure Bigfoot Unity is a bunch of different things together at the centerpiece of the system is these taps that are going to be for the particular insulin that a person is prescribed, whether it is an insulin made by Novo Nordisk or Sanofi or Eli Lilly, we have caps that fit all the different disposable insulin pens for both the basal insulin and the rapid acting insulin. First of all, you get these caps that fit the insulin that you've been prescribed. You also get a couple freestyle Li braise, you get a blood glucose meter that talks to the caps as well. You get in this first time experience kit, everything down to the pen needles and the alcohol swabs that are going to be used for parasite before you put on a sensor, literally everything that you need in order to initiate multiple daily injection therapy with the exception of the Insulet itself. It's all in this box. So this box comes to a person with diabetes in their home. We train them to use the system through a digital interface that we've developed support. onboarding to our system but also for people who are cgmp may never have bought a CGM before will literally through a zoom interface, walk them through the first experience with CGM, and then train them on the whole system. And the centerpiece of the system, as I said, as these caps, which basically do a simple thing they keep track of when you last gave yourself insulin. And they do calculations that are necessary in order to recommend how much to take based on your doctor's direction, very simply on the blackcap, which is focused on the basal insulin, you have one button, and you can only press the button and cycle through screens. So you press the button. first screen says this is when you last took the dose. So it could have been say 23 hours ago, and it's time to take another dose, you press the button again, and it's going to tell you how much you should take. And that's what you were prescribed by your healthcare provider. And what can be updated in the cloud, by your healthcare provider. Rapid acting cap, the white cap is got some additional functionality, but still works the same way. It's got a screen on it, and then you press the button, the first screen is going to have when you last gave a shot, which is particularly important for stacking insulin as you refer to insulin on board. This is one of the big challenges that people who are on shots have is that they don't have a record of when they last took the shot. And so actually making sure that they don't treat the same high glucose reading too quickly, and then end up with too much insulin and end up low. This is something that we help with by actually keeping a person from stacking insulin. So you press this button, it's going to tell you when the last took a dose, if within three hours, you had taken a dose previously, it's going to lock out a correction. And therefore you're not going to make that mistake. This cap also interfaces directly with the freestyle library to or a blood glucose meter, and basically takes that data and directly translates it into a correction dose if you are taking your correction based on again what your healthcare provider had prescribed. So whether it's a correction factor or a sliding scale that was written down on a piece of paper, you don't have to remember or do any calculations, it basically just takes the number from the libri and turns it into here's how much insulin I should take. And if I had previously taken insulin that keeps me from over insulinizing and stacking insulin Stacey Simms 12:16 over insulinizing? Is that an actual word? Jeffrey Brewer 12:22 Yeah, I think I heard that from one of the researchers one time, so Stacey Simms 12:25 we're claiming it if it's not, it's a rage bolus or it’s over-insulinizing Unknown Speaker 12:29 There you go. Stacey Simms 12:30 I didn't mean to interrupt you, sorry. Jeffrey Brewer 12:32 No, no worries, the next step, after you take a correction, maybe you're going to have a meal. And having recommendation for how to dose from mealtime. It actually turns out that small, medium and large is a format that a lot of people are able to understand and work with in terms of how to take carbohydrate content and actually correlate that with an insulin dose. It's actually the minority of people, even in type one, but certainly with type two that carb counts. And so thinking about this in a different way, and a simpler way, where you have maybe small medium and large buckets, and a corresponding number of units for insulin that shows up right on the pen cap. If you want to add the two together, you are going to click the button again. And then it's going to basically add a correction to whatever the meal bolus would be, you're going to pick that value that you're choosing as a patient, because we're not deciding for you, we're just telling you, here's what your doctor would recommend based on all the calculations that you usually would do, if you had to do them. If your doctor were sitting there with you, this is what he or she would recommend you do. But if you know more, because for instance, you know, you're going to be exercising vigorously later, and you want to protect against hyperglycemia a person might decide to take a year or two less. But basically we're going to get them all the information that we can take it and make it actionable for them take as many steps out as we can to just get them to the answer they want. Because I don't actually think people want to know what their blood sugar is. They want to know, what do I What should I do? How much insulin Should I take. And so every step we can remove, and every thing we can take out of this equation to make it easier for people to stay healthy and take the right amount of insulin and then forget about diabetes for another four hours until another meal. That's what we're trying to do. And we're trying to do that for people who take shots, which is most of the world in terms of multiple daily injection therapy is the preponderant therapy for intensive insulin usage. Stacey Simms 14:28 I appreciate you going through so granularly, I have learned that my listeners really like the deep dive anytime there is something new. So thanks for walking us through that. And you've mentioned the CGM. Let's talk about this. This is all integrated with the Libra when people use the Libra does it alert? Right back to Jeffrey answering my question but first Diabetes Connections is brought to you by Dario health and one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my dario.com forward slash diabetes dash connections. Now back to Jeffrey Brewer answering my question about using the abbot libre here, does it alert an alarm? Jeffrey Brewer 15:40 Very good question. So the way the library works is it gives data in two different manners. One is you take the pen cap and you swipe it over the library. And it gives you an on demand reading for what your glucose is at that particular moment. And that's the value that is used in order to calculate any corrections. But there's another way that libri is communicating, which is directly through Bluetooth to the smartphone. Because we have an app on the smartphone. And that's monitoring. For instance, for hypoglycemia, you have a couple different ways the library is working in order to support a person with diabetes, it's either directly on demand to make the calculation on the pen cap or go into the phone for monitoring for hyperglycemia. These are particular capabilities of the library to Stacey Simms 16:27 his delivery that is in big for Unity. Are there any different features? Or is it the same one that people can buy separately? Jeffrey Brewer 16:34 Well, it's the same libri puck. So the sensor itself, the part that you wear on your body, it's the exact same one that gets prescribed and fulfilled at the pharmacy or wherever else a person gets their lead rays. The difference is that we're not using the reader that avid makes, or the app that avid will have on the phone, the libri in our context is talking directly to our pen caps and to the app on the phone. So it's fully integrated into the system. This is an amazing thing that avid has given us, which is the ability to make it very, very simple for the end user such that you don't have to apps you have to worry about all the training is comprehensively designed such that I learned to use the library and the context Bigfoot system, one training one app, one company that's gonna support the whole system, Bigfoot, and then all the data that gets captured, whether we're talking about insulin data or glucose data, and then made available to clinicians in a unified interface to support them in adjusting the therapy over time. Stacey Simms 17:38 Well, this may be a really dumb question. I know that the Libra you scan with the phone, when it's separate from Bigfoot in Bigfoot Unity, do you scan with the pen? Or is it just automatic, Jeffrey Brewer 17:48 it's with the pen, you scan. That's actually the only way you...
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In the News: Once a week insulin, bolus by phone, and more...
05/20/2021
In the News: Once a week insulin, bolus by phone, and more...
It's "In the News..." the only LIVE diabetes newscast! In six minutes, we'll get you up to date on these stories and more: A weekly basal insulin moves forward in trials Bolus by phone comes to one pump system Big study shows how people managed diabetes during COVID Saliva test for glucose in trials Watch the video: https://youtu.be/X0JMDubA1c0 every Wednesday at 4:30pm EDT Sources & links in the transcript below ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription below: Hi, and welcome to Diabetes Connections In the News! A short weekly newscast full of the top diabetes stories and headlines of the past week. I’m Stacey Simms & whether you’re joining me live on Facebook or watching or listening after, I’m here to get you up to speed quickly XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff” In The News this week.. XX A potential once-weekly basal insulin is moving ahead in studies. These two trials looked at the safety and efficacy of a modified version of insulin called insulin icodec. Every participant – and they all had type 2 - was also taking an oral glucose-reducing medication that was not insulin, such as metformin. An extensive phase 3 program is underway –this includes people with type 1… it also will include people new to insulin and those who’ve already used it. Weekly Insulin Icodec could potentially take the place of daily basal injections. Weekly basal insulin: https://www.medicalnewstoday.com/articles/once-a-week-insulin-treatment-may-be-a-novel-way-to-treat-diabetes#Toward-a-less-burdensome-injectable XX Roche today announced the launch of the mySugr Pump Control, which lets you work your insulin pump directly via a smartphone. The first pump to be controlled with the mySugr app is the Accu-Chek Insight. This is only available in Austria right now, where mySugr is based, and on select Android phones. It will launch in more European countries soon. All the U-S pump makers are working toward bolus by smart phone but no approval yet. Interestingly, Roche calls the mySugr Pump Control an important building block within their integrated Personalized Diabetes Management or iPDM. If that sounds familiar, it sort of leads us into this next story.. Roche & MySugr launch bolus by phone: https://www.prnewswire.com/news-releases/roche-launches-mysugr-pump-control-within-the-mysugr-app-to-simplify-insulin-pump-therapy-via-smartphone-301294085.html XX Pump lawsuit in the UK. Insulet is suing Roche Diabetes Care claiming that Roche is selling tubeless insulin pumps three years before Insulet’s patent expires. The suit was filed last year but the trial just began in the U.K. High Court. Insulet claims that Roche has been infringing the patent on its Omnipod insulin pump by marketing their Accu-Chek Solo pump since mid-2018. Insulet has asked the court for an injunction to stop Roche from marketing these products. It is also asking for unspecified damages. https://www.drugdeliverybusiness.com/insulet-sues-roche-over-diabetes-tech-patent/ XX Is there a relationship between marital status and diabetes risk? These researchers say yes. Biggest finding? Men who are divorced/separated have increased risk for diabetes, and women who are widowed are at increased risk The usual assumptions here about men eating healthier while they’re married and women perhaps over-eating after the death of a spouse due to stress and because they’re not taking care of anyone anymore. . However, food doesn’t seem to actually be part of this study. So I think you have to be careful about that conclusion.. these researchers do say the big take away here is that other studies don’t differentiate between non-married or divorce… and widowed, which they say makes a big difference. https://www.dovepress.com/diabetes-mellitus-and-marital-status-evidence-from-the-national-longit-peer-reviewed-fulltext-article-IJGM XX New study from the American Diabetes Association and dQ&A, finds that growing numbers of people with diabetes have not only been forced to put off needed medical care since the outbreak of COVID-19, but that alarming numbers are struggling to manage their blood glucose levels. Key survey results found: Nearly 1 in 5 Americans with diabetes have skipped doctor's appointments since the start of the pandemic, mostly due to fear of contracting the virus; 1 in 4 people report having trouble controlling their blood glucose levels 1 in 10 say they have developed new health complications like high blood pressure, heart problems, peripheral artery disease, and eye disorders since last March. ADA COVID & Diabetes study: https://www.johnsoncitypress.com/covid-fears-kept-one-in-five-people-with-diabetes-away-from-the-doctor-during-pandemic/article_ffcb98a9-55df-58ad-a010-c7acd12070bb.html XX A saliva test for glucose levels? That’s coming up but but first.. quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible. ● Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. The latest episode talks about when a belief thought to be settled science turns out to be wrong. And to illustrate that point they talk about the horse poop crisis of New York City. Really. Listen to Inside the Breakthrough wherever you listen to podcasts.. XX Back to the news.. A South Korean company is seeking the approval of both the US and Korean Food and Drug Administration for the commercial rollout of its saliva-based glucose monitoring device after completing its first clinical trial in December. The device called D-SaLife, uses something called a microcurrent control technology to determine the glucose level present in a saliva sample. They say they will move to clinical trials in the US – that first one was in in Seoul – but no date so far. D-SaLife is not the only saliva-based glucose test in the works. There’s an Australian company that’s testing a disposable strip. Glucose saliva test: https://www.mobihealthnews.com/news/apac/south-korean-chipmaker-bats-us-fda-approval-its-non-invasive-glucose-monitoring-device XX And finally, this one caught my attention because the headline says Gnome Man begins 380 mile walk to type 1 diabetes camp. Turns out Richard Humphreys runs the Gnome Countryside Nature Trail in Pennsylvania. But he is 78, has lived with type 1 for 64 years and really is walking 380 miles to raise money for Camp Ho Mita Koda – the world’s oldest operating summer camp for children with Type 1 diabetes in Newbury Township, Ohio. Good luck Richard and wow. Thank you. Gnome man walks to D-camp: https://lancasteronline.com/news/local/watch-kirkwoods-gnome-man-begins-380-mile-walk-to-type-1-diabetes-camp-in-ohio/article_8a5bc632-b669-11eb-a02a-f7a41b012ed6.html XX That’s Diabetes Connections – In the News. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – we’re talking to one of the founders of Bigfoot Biomedical about their new FDA approval and also what it means for other products in their pipeline. Thanks and I’ll see you then!
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"It's Actually Very Fragile" - Keeping Insulin Cool in Hot Weather
05/18/2021
"It's Actually Very Fragile" - Keeping Insulin Cool in Hot Weather
It's getting hot out there and it's vital we keep insulin at the right temperature. However, that's something health care providers say isn’t always front of mind. Stacey talks to Diana Isaacs, a Clinical Pharmacy Specialist and a CDE at the Cleveland Clinic. We’ll get the real deal about insulin temperature and suggest some ways to keep your supply safe. In Tell Me Something Good… glamorous inspiration and a grateful mom – plus babies! And a big anniversary. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out (promo code valid through 8/31/2021) EPISODE TEXT HERE... ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription below Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:20 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 This week, it's getting hot out there a conversation about keeping your insulin at the right temperature. It's something healthcare providers say isn't always front of mind when we're troubleshooting tough diabetes days. Diana Isaacs 0:39 Why are the blood sugars out of range this day? Why was it in range this day? And why? What's the difference? And this is really one of those pieces to the puzzle. And I think we spend so much of our time worried about other pieces like food that sometimes this really goes neglected. Stacey Simms 0:55 Diana Isaac's is a Clinical Pharmacy specialist and a CDE at the Cleveland Clinic, we'll get the real deal about insulin temperature and suggest some ways to keep your supply safe in Tell me something good, glamorous inspiration, a grateful mom and babies plus a big anniversary. 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 always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. You know, My son was diagnosed 14 years ago, just before he turned to my husband lives with type two diabetes. I don't have diabetes, but I have a background in broadcasting. And that is how you get the podcast. I live in the southeast us in North Carolina. So it has been warming up for quite a while here. But pretty much all over the United States. We are seeing the warmer weather hot summer is coming. Shout out to our listeners in Australia and elsewhere in the world where summer is not coming please save this episode for a few months. But in addition to the advice here, I've got a thread going in the Diabetes Connections Facebook group about what to use not only to keep insulin cool, but to keep diabetes gear holding tight in the summertime CGM and pump sites as you know, tend to slide off in the wetness sweat. So please check that out. Lots of good suggestions. And as I mentioned, in my book, the world's worst diabetes mom, we really like stay put medical to hold stuff on. But I'll tell you in a pinch Benny will just slap a big waterproof bandaid over his Dexcom I really like the clear tegaderm stuff, but I mean he doesn't care yelled us anything and you can find that in a CVS. So if you're off to the beach and you don't have anything, it really comes in handy. Most of the rest of the stuff that's being suggested in that Facebook group thread has to be special ordered either Amazon or the website from the company that makes it okay quick housekeeping note, you will hear my guest mention a product called VIVI cap in this interview and I have a promo code for you if you want to buy it you'll get a discount if you use the code, but I'm not being paid by VIVI cap. Although we are talking about doing something together in the near future. My guest is not a paid consultant for VIVI cap. She really likes the product and they know that and they helped coordinate this interview that said this conversation is about a lot more than one product. So whatever you use, keeping insulin at the right temperature is really important that promo code for VIVI cap is DIACON21, which gets you 10% off the [email protected] I'm pretty sure you're not listening with a pen. So I will put that in the show notes and on the episode homepage at Diabetes connections.com. My guest this week is Diana Isaacs, she is a Clinical Pharmacy specialist and the remote monitoring program coordinator at the Cleveland Clinic Diabetes Center. She was the 2020 at CES Diabetes Care and Education Specialist of the year and a Cleveland Clinic. She does have a pretty unique CGM training program. And you'll hear about that during the interview as well. But first Diabetes Connections is brought to you by Dario health. And we first noticed Daario a couple of years ago at a conference and Benny thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Daario offers even more now, the Daario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports based on your activity. Find out more go to my daario.com forward slash diabetes dash connections. Diana Isaac's welcome. Thanks so much for joining me. I'm really interested to talk more about this. Thanks for being here. Diana Isaacs 4:46 Great. Thank you so much for having me. Stacey Simms 4:48 Or it is getting hot. I know that not everybody lives like I do in the south where it's been hot for a while. But let's start by talking about what you tell your patients. Diana Isaacs 4:58 Yeah, so many people don't really The storage and the storage of insulin is so important. It's actually very fragile. And if it's not stored correctly, it actually most commonly it loses its potency. So it ends up you know that 10 units of insulin that you inject doesn't work like 10 units to work like seven units, like six units, you just don't know exactly, it's just will not be as potent. Stacey Simms 5:18 When we're talking about storage of insulin. I know if I leave it in my hot car, and it gets to be, you know, above 110 degrees, it's going to lose its potency, but day to day, just kind of throwing it in the bag or having it with you, how do you need to store it, Diana Isaacs 5:33 it's recommended any unused insulin pens or vials or cartridges should actually stay in the refrigerator, once it's been opened, then typically, it's good at room temperature for either 28 days, or some of the newer insulins are good up to 56 days, when it goes above that room temperature, that's when you really can't guarantee the potency anymore, and that's when it can break down and it is not going to be as effective. And in terms of Well, what's the danger of that? Well, a you really have no idea how much you're giving yourself. Because like suddenly, you know, what you usually give yourself isn't going to work as effectively. And you know, the real risk or the big risk would be a complication like diabetes ketoacidosis, where you're just not getting enough insulin and that could be you know, a life threatening complication, Stacey Simms 6:23 what is considered room temperature Diana Isaacs 6:25 78.8 degrees, it should be it should not go over 78.8 degrees Fahrenheit or 26 degrees Celsius, Stacey Simms 6:32 you mentioned that the newer insolence can be out of the fridge for 56 days which insolence. Diana Isaacs 6:37 So specifically, the ultra long acting like tresiba, insulin degludec, and then toujeo, which is insulin collaging. You 300 those lasts a little bit longer at room temperature. Stacey Simms 6:49 Do you have any idea why I know those are made up a little differently from like, you know, Lantus or levemir. Diana Isaacs 6:54 Yeah, the you know, they're just, they're made a little bit differently, which allows them to act longer in the body. And that's how they were studied to show that the potency, you know, still really maintains a fact at that point. And I mean, it's good also, because there's larger pens that holds more units. And so you know, that way a person, if they needed it for 56 days could have that the reality is a lot of people with the doses that they're on, you know, will go through a pen, you know, much faster than been 28 days. All right, Stacey Simms 7:26 we're gonna do some True Confessions here, because I gotta tell you, we have kept insulin a lot longer than 20 days. And we have, and again, I'm not a diabetes educator, and endocrinologist. So you know, I'm just telling you what we have done as you listen, not just for you. But for example, Benny had a vial of insulin, my son that he took in and out of the fridge at school for almost an entire year, it was like a backup. So he would use it if he needed it. And when he was in elementary school, he used like, drops of insulin. It's not like now and he's a teenager. So we would put it in the fridge at the beginning of the school year, and then he would like take it out, use it, put it back in, take it out music, put it back in. Now, I know that's not advised. But it does work. So I mean, how delicate really is insulin, if we can get away with doing something like that. Diana Isaacs 8:08 So Oh, man, you're burning my ears as a pharmacist? Oh, I hear that. But yeah, I mean, we know that that is reality that people are doing that. I think, you know, as long as it has maintained its room temperature, or refrigeration, probably a lot of insulins have at least close to the near potency for longer. It's just it really can't be guaranteed beyond that point. Because how it studied, I think, where things become different, or when it's exposed to too much heat, like we know for a fact that when it's exposed to high temperatures, or direct sunlight, it mean it loses its potency almost immediately. And if you've ever had you know, the insulin just sitting in the sun and then try to inject it, I I'm willing to bet it would be different. It wouldn't it would not work as well. Stacey Simms 8:53 Right? And I think with that example that I gave, it never got below the refrigerator temperature because it was out and in so quickly. But I give that example because I know people who once they take it to the fridge, they think that's it. And it's just it was probably out for less than three minutes. Diana Isaacs 9:08 Yeah. So I mean, that's interesting, right? So it's still you use it, but right, it wasn't out as much. So obviously, it's not ideal. We can't confirm how you know that it's so potent, but it sounds like in your case it was I have seen a lot of situations though, where people use insulin for example, longer in their pumps, like usually we say to change it out, you know, every three days and an insulin pump and people go five days, seven days and a lot of people notice as they go further out from those three days that it seems like they are needing more insulin that it is losing some of its potency. Stacey Simms 9:39 I will say one of the only times we had an I refer to it very scientifically, skunky insulin. The only time we had skunky insulin was we had come home from summer camp and had unpacked the car but we had not seen like one of the bags kind of worked its way into the corner. And of course that was the bag that had two vials of insulin and two or three days later in our house. Summer car. We this was years and years ago, we used it anyway, of course, it did nothing. It was like sailing, or it was really bad. So that was a realization like, oh, it really does get terrible. Unknown Speaker 10:12 Yeah. All that precious insulin law. I know. I know, Stacey Simms 10:17 well, once we know, it's been 14 and a half years, so it happens, it happens. What do you advise patients then to do I mean, obviously, we can change out pump insulin more often. But as you said, Nobody wants to waste precious insulin like that. What are the tips that you give people to keep their insulin cool in the summertime, whether it's in a pump in a vial, that kind of Diana Isaacs 10:42 thing? Yeah, so I'm a really big fan of something called the Vivi cap. And this is actually can go over like, it can replace the cap of an insulin pen, and you put it on there, and it guarantees that it stays at room temperature, even if it's exposed to, you know, a really hot car, really extreme temperatures, that is something that I've really been recommending for my patients, because it's just, it's a simple tool. And that way, you don't have to stress about like trying to, you know, I see a lot of people trying to get ice packs and things and that, that's risky, because you could accidentally freeze your insulin. So some a tool like the vivie cap, I find is really, really helpful, Stacey Simms 11:20 you want to take us through a little bit of what it does. Diana Isaacs 11:23 Sure, basically, it replaces the cap. So essentially, you know, like, let's say you have a novolog pen, right that you're using for your meal time injection. So you would go ahead and you would take off the cap. And instead, you would go ahead and you would put this Vivi cap directly on it, and you would replace that. And then you honestly, you can just throw it in your purse, in your bag, or whatever. And when you want to be sure that the insulin, you know, let's say you were in extreme temperatures, it was in your 100 degree car, and you're not sure if this insulin is going to be effective or not, there's a button at the top of it, and you go ahead and you press it. And if that button becomes green, then you know that that insulin was stored properly, it is a safe temperature, and it is safe to be able to use it if the D button would turn red, that would tell you Oh, there was an issue, the insulin is not safe. Now the good news is the way it actually you know, through a thermal cooling mechanism is actually getting rid of the heat where the insulin is. And so it's saying, you know, keeping it at room temperature. And why this is important also is because a lot of other things out there will make insulin really cold or accidentally freeze it or just make a cold. And really once it's out, and once it's open, it should say every temperature and so this really ensures that it will happen. Stacey Simms 12:52 That's interesting. So the V cap doesn't necessarily keep it cold. It keeps it like it doesn't keep it refrigerated. Diana Isaacs 12:59 Right, it's keeping it at room temperature. So it's really meant for the pen that you're using you're actively using. You can throw this cap on you can put it on your long acting and your mealtime insulin, and you can go on a trip, you can go wherever do whatever and it will stay at room temperature. Stacey Simms 13:17 Here's a dumb question. We don't use pens very often. So I'm curious, do all pins have the same caps would this fit on pretty much any insulin pen RIGHT BACK TO DIANA in just a moment but first Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar and in the case of very low blood sugar why we carry emergency glucagon? There's a new option called Gvoke Hypopen. The first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. Now back to Diana answering my question about what type of insulin pen fits in the VIVI cap? Diana Isaacs 14:25 No, that's a really good question. So they actually make different ones for different types of pens. So for example, if you're using like the novalogic products like novolog, and for siba are similar. There's a V cap for those. If you're using like human log products, they have a different Vivi cap. And so yeah, depending on the type of insulin that you're using, you would just go ahead and get the vivie cap that goes corresponding to the one that you need. Stacey Simms 14:49 It's amazing that until now, I mean we're seeing a few more products address this, but it seems like you know insulin has been around for a long time and you know until recently cuz I've seen a few products like this until recently, the freo is the only thing I can think of that was really out there affordable, you know, easy to use, do you think people are just kind of catching on to the fact that this is really important? Diana Isaacs 15:11 Well, I think this is just like a really neglected area. Like I spend a lot of my time like analyzing glucose levels, looking at CGM, and in blood sugars and all that kind of stuff. You know, often you're trying to figure out the puzzle. Why are the blood sugars out of range this day? Why was it in range this day? And why? What's the difference? And this is really one of those pieces to the puzzle. And I think we spend so much of our time worried about other pieces like food that sometimes this really goes neglected. And as it's summer, you know, summer is approaching is really a good opportunity to remind everyone that this is a really important for insulin. I mean, this is so so important and will affect it, if it's not stored properly. Stacey Simms 15:52 It just sounds like common sense. But I'm curious, have there been studies of this? Do we have any idea how many people are having issues with insulin that's not stored properly, or using insulin that has, you know, been out of the fridge for too long? Is there any information on that? Diana Isaacs 16:08 Well, I don't know, if we have, you know, we certainly don't have like randomized control trial data on that. I mean, how would you do it? Right? I can tell you anecdotally, I think it's just difficult to capture. Because you could ask people I mean, oh, with any person will say that they've had their insulin at high temperatures at some point. I mean, if you, you know, are a human being that goes outside, you know, it's likely that your, you know, your insulin was exposed to higher than room temperature. It's just a matter of how long and I think in the summer, it's really easy for it to, you know, when you meant for it to just be a couple of minutes, that ends up being hours. And then before you know it, you just don't know. And I think also it's difficult to classify, because there's so many reasons that blood sugars can go higher. And so in the moment, it might be hard for someone to be like, Oh, wait, oh, yeah, I was, you know, I left my insulin in the car for three hours. That's why my blood sugar is so high versus they might be thinking, Oh, was it the food I ate? Or am I under stress? So I think sometimes it's just difficult for people to make that connection that it really was the insulin that made their sugars higher, Stacey Simms 17:11 because I'm kind of picturing people...
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"In the News..." - The Week's Top Diabetes Headlines
05/13/2021
"In the News..." - The Week's Top Diabetes Headlines
The only weekly diabetes newscast! We're covering the top stories of the past week including: -- Big insulin recall from from Novo FDA approval for Bigfoot's Unity system Lilly inks a new agreement T1D athletes speak up about the COVID vaccine -- These are planned for the month of May - Stacey shares live on Facebook every Wednesday. If you like it, we'll keep it going! Full transcript and news/source links below. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcript and links below: Hi, I’m Stacey Simms, the host of Diabetes Connections, a weekly podcast providing info & inspiration with a focus on people who use insulin. This is “In the news..” a new, short newscast full of the top diabetes news of the past week. The goal here is to get you up to speed – quickly – with good info. XX And let’s not forget.. Diabetes Connections In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff” Let’s jump in! In The News… XX Novo Nordisk is voluntarily recalling nearly 15-hundred product samples because they were stored at the wrong temperature. This recall is only for product samples – NOT for the insulin you get at pharmacies or mail-order services. But it does cover Levemir®, Tresiba®, Fiasp®, Novolog® and Xultophy (ZUL-ti-fye like multiply). We’ll have a link in the show notes with all the info, batch and lot numbers to look for. Side note we just got Tresiba samples for the first time from my son’s endo. So good timing there!. You should receive a notice from your doctor if you have any of this insulin, but there’s a phone number to call and a way to report to the FDA as well. Again, link in the comments here on FB and in the show notes if you’re listening to the podcast. Insulin sample recall: https://www.prnewswire.com/news-releases/novo-nordisk-issues-voluntary-nationwide-recall-of-levemir-tresiba-fiasp-novolog-and-xultophy-product-samples-due-to-improper-storage-temperature-conditions-301286839.html XX Bigfoot Biomedical gets FDA approval for it’s Unity Diabetes Management System. This is a connected pen system – where the insulin pens, both long and short acting, take data from a Libre 2 continuous glucose monitor and give insulin dosing instructions. You’ll get current glucose numbers as well as any recommended correction doses. The system also provides reminders for the long acting pen and provides low notifications. The unity system was cleared for people 12 and older with Type 1 or Type 2 diabetes. Bigfoot was founded in 2014 to create a commercial version of an existing DIY hybrid closed loop pump system. That is still in the works, under the Autonomy label. We’re working on talking to Bigfoot in the next week or so to catch up. Bigfoot Unity FDA approved https://www.mobihealthnews.com/news/fda-greenlights-bigfoot-biomedicals-insulin-recommending-diabetes-management-system https://www.bizjournals.com/triad/news/2021/04/22/vtv-wins-fda-designation-for-diabetes-therapy.html XX After nearly a century, BD is spinning off its diabetes care business. The split is expected to be completed in the first half of 2022, after which the segment will become a completely separate, publicly traded company, tentatively dubbed "NewCo." BD spins off: https://www.fiercebiotech.com/medtech/bd-to-spin-off-diabetes-care-business-into-newco-a-standalone-public-company XX New deal for Eli Lilly and four diabetes management companies – integrating the not yet released Tempo Pen and Tempo Smart Button products. The companies that signed with Lilly here are Dexcom, Glooko, myDiabby Healthcare and Roche’s MySugr. myDiabby is French and I’m sure I’ve pronounced it wrong. These agreements are all about integrating with software platforms and allow for the collection and sharing of personal health data. Lilly agreement with 4 diabetes companies: https://www.mobihealthnews.com/news/focused-diabetes-eli-lilly-inks-integration-deals-roche-dexcom-glooko-and-more XX Tandem’s latest earning call in just a moment but first.. quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Inside the Breakthrough explores the idea of a “Eureka” moment. It’s historical wisdom mixed with modern insight – a little bit history show, little bit science show. The latest episode tells the story of Dr. Banting and the discovery of insulin. Every week is a different story – they’ve talked about snake oil and leaded gasoline & crime – but this week has info about the discovery of insulin that I’d never heard.. Banting had to sell his car to get money to buy dogfood. And of course, there’s scientific info as well. Listen to Inside the Breakthrough wherever you listen to podcasts.. XX Back to the news.. Tandem diabetes had it’s first quarter earnings call last week. Several highlights: They have submitted a couple of new features to the FDA and are waiting on approval. First, still waiting for an update to the Control IQ algorithm to allow for more personalization Second is the mobile bolus or what I call bolus by phone. They got some response from the FDA in March but this, like many projects, is delayed because of COVID. Tandem CEO John Sheridan says, “we're no longer planning for our Q2 clearance, but we will be working to bring this highly sought after feature to market as quickly as possible.” It’s still expected before the end of this year. T-sport also pushed back, Sheridan wouldn’t give a specific date on that but when pressed, said probably a commercial release in summer 2022. For parents of young children, Tandem has started a study of CIQ with toddlers as young as two. Tandem earnings call transcript: https://www.fool.com/earnings/call-transcripts/2021/05/06/tandem-diabetes-care-inc-tndm-q1-2021-earnings-cal/ XX Max domi (DOE-mee like show me) shot Finally, Some prominent athletes with type 1 are speaking up about urging people to get the COVID 19 vaccines. Indy driver Charlie Kimball did a PSA for the Indiana Dept of Health – I’ll link up that video.. and NHL player Max Domi (Doe-mee like show me) spoke out at a media avail. This quote was tweeted out by reporter Bailey Johnson. Domi says: in part, "I will never forget the feeling I got after having the vaccine. Just the sense of relief and freedom... as soon as I got it, it was like the world was lifted off my shoulders. Once I did that, my game took off, I felt better about myself and was just enjoying life a lot more. Diabetes or not, it freed me up a lot and I'm thankful I had the opportunity to get it when I did." That’s Diabetes Connections – In the News. I’m going to do this for about a month and see what the response is. So far I’ve been thrilled to hear from a lot of you who like it. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – we’re talking about the importance of keeping insulin at the right temp during the hot weather.. not related to that Novo recall I told you about today, but definitely timely, Thanks and I’ll see you then!
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Zegalogue: The Newest Easy-To-Use Rescue Glucagon
05/11/2021
Zegalogue: The Newest Easy-To-Use Rescue Glucagon
After decades with just one not-so-user-friendly option, another shelf stable rescue glucagon enters the market. It’s called Zegalogue, FDA-approved and coming soon in both an auto injector and a prefilled syringe. One additional future use will be in the Beta Bionics iLet pump with two chambers – one for the insulin and one for this glucagon. Stacey talks with Frank Sanders, President of Zealand Pharma U.S. and Dr. David Kendall, Senior Global Medical Advisor. This interview covers everything from the use of Zegalogue now to cost and a look at how far treatments have come. 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 below Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed autoinjector for very low blood sugar and by Dexcom keeping you in control with an integrated system for diabetes management. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week after decades with just one not so user friendly option, another rescue glucagon enters the market. It's called Zegalogue, one future use will be a pump with two chambers, one for the insulin and one for glucagon. Frank Sanders 0:43 So, with insulin being one side of that equation, when glucose does go lower, instead of simply shutting off the insulin and waiting for it to clear from the system, you have counterbalance, or the ability to counter regulate with the glucagon infusion in small little delivery boluses. Stacey Simms 1:02 That's Frank Sanders president of Zealand pharmacy in the US, he and Dr. David Kendall, their senior global medical advisor, join me to talk about everything from the use of Zegalogue now to cost and to look at how far treatments have come. And spotting a diabetes pump in the wild never gets old. I'll tell you a quick story about what happened with us. 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 all here we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Ben in the state is 14 years ago with type one, my husband lives with type two, I don't have diabetes, I have a background in broadcasting. And that is how you get this podcast. Thank you for the great feedback out last week's not really a bonus episode. But second episode that I've been doing, I changed it up again. And I released Diabetes Connections in the news, many of you have already listened to it. But I'm thrilled that I'm getting reaction. I don't even mind if it's constructive criticism or just I hate it. I really would like to know what you think I'm experimenting throughout the month of May. We're going to do four episodes of in the news live on Facebook first on Wednesdays at 430. And then a podcast episode that will turn around probably Thursday night or Friday morning and get you caught up on the week's news. So please let me know we have a post going in the Facebook group as well. You know, six years ago, I launched this podcast and I liked that I'm still experimenting with it. And I hope that you do too because the idea is just to get you good information that you can use whether it's long format like we're going to do today, or short headlines, like I'm trying with that in the news stuff. And of course we throw in some personal stories here and there. And after this interview, I'll tell you about Benny's first wrestling match and how you know we spotted diabetes in the wild. Alright, my guests this week are from Zealand Pharmaceutical, they just got FDA approval a few weeks ago for Zegalogue. The newest shelf stable emergency glucagon, you know, it really is incredible when you think about it the last 40 or 50 years more than that all we've had for emergency glucagon has been the stuff in the red or orange emergency box, the kind that you have to reconstitute yourself you know, and studies show that most people even those trained you don't use it very well especially under stress. And now we have three options vaccine me and G vo hypo pen and Vega log. You're going to hear from Frank Sanders. He's the president of Zealand pharmacy and Dr. David Kendall. He is their senior global medical advisor Frank Sanders has been in the pharmaceutical industry for more than 25 years. He has been with a company called therapeutics he's been with Johnson and Johnson's pharmaceutical arm many of you are familiar with Janssen pharmaceutical. He's been with GlaxoSmithKline and Dr. David Kendall has held many leadership positions in the diabetes community including at mankind at Lilly at the American Diabetes Association and at the International Diabetes Center in Minneapolis. Dr. Kendall and I also go way off topic toward the end because he served as a clinical investigator with the dcct and edic trials here homeless tourists will remember those evidence based on hope episode, which is one of my all time favorites, I will talk about the DCC T and edic trials at the drop of a hat. And I was so excited that Dr. Kendall can too Okay, quick disclosure gotta tell you, your competitor to this product is a sponsor of this show. In fact, I'm about to read an ad from them. But as you know, Diabetes Connections is here to help you get information about the diabetes community and I don't limit who we talk to because of who spends money on advertising. Now on the flip side, the advertisers are also on board with all of that so I give them a lot of credit to longtime listeners are familiar with all of this, but just in case, I like to talk about it every time and let's keep things on the up and up. Okay, let me tell you then Diabetes Connections is Brought to you by Gvoke Hypopen and our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing, we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be frightening which is why I am so glad there's a different option for emergency glucagon. It's Gvoke Hypopen . Gvoke Hypopen is pre mixed and ready to go with no visible needle, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon dot com slash risk. Frank Sanders, Dr. Kendall, thank you so much for joining me today. I'm really interested to learn more about this. I appreciate you being here. Unknown Speaker 5:50 Thank you. We're glad to be here as well. Yeah. Thanks so much, Unknown Speaker 5:52 Stacy. Stacey Simms 5:53 You got it. So Frank, let me start with you. If I could just, you know, to give us an overview a little bit. We've never talked before, if you could kind of catch me up on what Zealand is all about. And then we'll talk about Zegalogue. Frank Sanders 6:05 Yeah, sure. Thank you for the question. I appreciate it, Stacy. So I'll start by saying that Zealand is a global biotechnology company and a world leader in peptide therapeutic development. Well, it may seem like a new company, the company was actually founded in 1998. It is headquartered in Copenhagen, Denmark. And we have our US presence and our company in our corporate office in Boston in the seaport area. So the company has approximately 330 employees worldwide. And our we believe our distinguished advantage is our unique peptide platform that allows us to design and engineer highly innovative peptide and peptide like medicines for, you know, for multiple conditions. So we have a 20 year legacy in r&d and peptide therapeutics, and we're very proud of what we've delivered. Stacey Simms 6:50 Can you take just a second and I when we hear peptide on this podcast, we just think about that C peptide test, right? That helps figure out if it's type one or type two diabetes, what does a peptide therapeutic be? Dr. David Kendall 7:02 I'm happy to take that one. And Frank, please feel free to chime in. But Stacy, a peptide in the common ones that I'm sure this audience knows about are things like insulin, glucagon, or modifications there. But they are very simply the proteins. In the body peptides generally referred to proteins which are made up of these building blocks we call amino acids, usually up to 25 to 50 of these amino acid segments plugged together glucagon, which we'll be talking about today, and LC glucagon is made up of 37 of these building blocks. So peptides that are commonly known are just those proteins that circulate in the body or makeup, the structure of the body. Stacey Simms 7:46 Alright, let's talk about Zegalogue. I think most of my listeners are familiar with the concept of needing emergency glucagon sometimes, but tell me the specifics about Zegalogue Frank Sanders 7:56 So the clinical profile Zegalogue is compelling. And we are actually out in active dialogue with payers right now. And we have been in dialogue with healthcare professionals and patients around the profile through market research before we execute a full product launch following approval. And the approval of Zegalogue is based on the results from three randomized, double blind placebo controlled controlled phase three trials, that's a mouthful in both children and adults with type one diabetes. And what's marketed and notable about Zegalogue is the median time to blood blood glucose recovery of 10 minutes that we've seen across all three phase three trials. More specifically, in the phase three trials. 99% of adults recovered in 15 minutes in the main adult trial, and 95% of pediatric patients recovered and 15 minutes in the pediatric trials. So So we believe the dialogue offers patients and caregivers in an important new choice for the for the management of severe hypoglycemia, which is a condition where minutes obviously matter, so we're eager. So the launch the product, in just over a month and late June, Stacey Simms 9:02 didn't take me into that study a little bit more in terms of how low people were, if you can share that. Dr. David Kendall 9:09 Happy to do that, Stacy and as Frank mentioned, glucagon, the native peptide or protein that many people have known about, and I'm sure many of your listeners are familiar with has been around and available for treatments since the 1960s. But what Zegalogue and dasiglucagon the active molecule was able to do is make modifications in that peptide chain to ultimately lead to chemical that we felt was suitable for development that went through those clinical testing programs that Frank talked about, and specific to those trials to bring this forward as a medication that could be reviewed and approved for the treatment of severe little bunch of blood sugar, or what we call severe hypoglycemia required that in controlled fashion, taking volunteers, courageous and really volunteers to whom we are incredibly grateful to use an insulin infusion, so give insulin in their vein in a controlled way, bring their blood sugar below a specific level, usually that level is 70 milligrams per deciliter or lower, slightly higher in the studies with children, and do that in as controlled away as possible, then stop that infusion of insulin. And this is really meant Stacy to mimic what might happen in an unexpected, unanticipated severe low blood trigger event. And those individuals then are given a dose either of placebo medicine, or in the case of these studies, Sega log and its pre Approval Form dasiglucagon, and then in those same trials, not for direct comparison, but just to understand what the world was familiar with, we also gave selected individuals, the traditional glucagon from the emergency kit that many people may know, which is the one that requires that it be reconstituted, mixed up, drawn back up in a syringe and then given so the studies took experimental, low blood sugar, let's say on average, the value is just below 70. Got the dose of medication. And then we measured the so called time to recovery that Frank talked about which in all of these trials was how long it took to see that number no matter where it started to come up by 20 points. So a very consistent measure of recovery time. And as Frank said, the median time to recovery was 10 minutes across each of the three larger phase three trials. And you looked at the 15 minute time point, which is a very important one for watching loved ones recover and making sure that they either are responsive or another dose of medicine can be given 99% of adults, 95% of children had recovery Unknown Speaker 11:55 in that time period. Dr. David Kendall 11:56 So very important to understand how the trials were done. But ultimately, it led to our review and approval as a treatment for severe low blood sugar. Stacey Simms 12:06 Wow, I appreciate you going through so thoroughly, I have a couple of questions, because I have a couple of friends who have gone through clinical trials for products like this. I don't know if they were specifically in this one. But as you said, You don't just sit there and say, Okay, give me all that insulin, no, I'm gonna go low. You know, we really have to thank those people. But you mentioned some of them got a placebo. So I know it was a safe environment. But what does that mean? Like they just sat there and went low for a while? Frank Sanders 12:32 Yeah, I'm always amazed the Food and Drug Administration, their regulators are thoughtful and cautious about how these studies are designed, we are as well, in placebo, obviously, is done only in a controlled setting where we understand what the potential risks of giving, essentially, no therapy might be. But knowing that in these studies, as I said, Even though zega log is approved for the treatment of truly severe low blood sugar, these were not patients that lost consciousness couldn't manage for themselves, but in a controlled setting where we could give them an intravenous injection of glucose if we needed to, or ultimately rescue them with safety glucagon administration, these were individuals who had to understand that they were going to go low, probably feel something they felt before not necessarily feel comfortable, and then know that there was a chance they were getting just saltwater sailing, or potentially getting one of the other two therapies. And obviously, they were monitored very carefully. And we didn't allow this to go on, you know, indefinitely. They were ultimately treated either with glucose by vain or given something to eat. Stacey Simms 13:42 I'm curious to, again, I appreciate you letting me go down this rabbit hole. There is an interesting conversation all the time in the diabetes community about letting those go. And I know some of you, as you listen gasped. But I mean, there are some times where you'll sleep through a low or you'll just won't notice although you know, you're 7075 and then you'll, you'll float back up because your liver has kicked in it. You know, I'm curious, I know, this wasn't what the study was designed to do. But was there any information from the placebo folks of them kind of recovering without treatment? Right back to Dr. Kendall answering that question. But first Diabetes Connections is brought to you by Dario. And the bottom line is you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us with that and that he understands the plan has to change as Benny gets older, you want that kind of support. So take your diabetes management to the next level with Dario health. There are published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one c within three months and a 58% decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my dario.com forward slash diabetes dash connections. For more proven results and for information about the plan now back to Dr. Kendall, answering my questions about those that kind of resolve on their own. Frank Sanders 15:13 So the the proportion of people who recovered with placebo therapy was extinguishing Lilo, I will say, at least in the 15 minutes time period, by 45 minutes, either they had recovered or we allowed them to recover. I know a bit more about this, because I spent my early years of research doing these experimental low blood sugar studies. And your comment about letting the logo is not something I certainly would advise as a health care professional, but it does happen. And the risks if it's not a severe low, are often you know, an inconvenience or disrupted sleep or in some cases, complete lack of awareness. The risk there, Stacy is any low blood sugar makes a subsequent low blood sugar more likely. And the typical symptoms and responses that the body has, will diminish when the body has seen multiple episodes of low blood sugar. It's as if the body's saying I've seen this before, I'm going to quit warning you and treating it. And that, as we've learned over time is one of the risk factors for an unexpected and more serious and severe hypoglycemic event. So I would not recommend letting the logo Stacey Simms 16:24 be either, I want to be very clear. But it is something that is discussed. It's not as though that's something that to be very clear as you listen and to you all to, it wasn't something I said in that I endorse it. It's just that it does happen. And we see that sometimes you don't treat a low and sometimes it bounces back. So I didn't mean to imply that we should be twiddling our thumbs while our kids are low. Dr. David Kendall 16:48 Right? And you're absolutely right, the body does maintain some of those defenses as ecolog. What we're talking about here is there for those circumstances where the defenses are no longer adequate, someone loses consciousness, the ability to care for themselves. Alright, Stacey Simms 17:05 let's let's get back on track here. Again, thanks for following me down that rabbit hole. And I'm always fascinated by studies and the process. Frank, let me ask you what so what is this is tell me a little bit about the product itself because we have other products on the market. Now you mentioned already the rescue kit that needs to be reconstituted, there's a nasal spray, there's a shot. Frank Sanders 17:22 Now this was this is so second log is indicated for the treatment of severe hypoglycemia, and pediatric and adult hit and adult patients with diabetes. Ages, six years and above, we're going to be launching it with two forms available. We're one of those is going to be an auto injector a single dose auto injector and the other will be a single dose prefilled syringe, but both of which can be used immediately without requiring reconstitution that may allow for easier use at that moment when it's needed. And so you know, that really at a basic level, that's that's core to what what Zegalogue is. And we again, believe that based on the clinical study that David David has talked about the study data all three is that what distinguishes like a log is really the the median time to recovery of 10 minutes across all clinical trials...
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In the News: Your New Weekly Diabetes News Digest
05/06/2021
In the News: Your New Weekly Diabetes News Digest
New information about kids with type 1 and COVID, a possible link between pollution and type 2, a look at Dexcom's latest earnings call and a lot more. We're trying something new for the next few weeks! Join Stacey live every Wednesday on Facebook for the top diabetes news and headlines or listen back via the podcast or on other social outlets. Full transcription and links/sources below. Watch the replay on our or ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Podcast intro: Hi all! This episode is very different. Instead of a classic episode, I wanted to try something new. What you’re about to hear first aired live on our FB page. Join me every Wednesday this month at 4:30pm eastern for DC the news! -- Hi, I’m Stacey Simms, the host of what’s usually a weekly podcast providing info & inspiration for people with diabetes with a focus on people who use insulin. I’m trying something new. A short newscast full of the top diabetes news of the past week. And that’s all types of diabetes. We’ll debut here on FB Live and then share on other outlets, including the podcast. The goal here is to get you up to speed – quickly – with good info. And let’s not forget.. Diabetes Connections The News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff” Now.. let’s start! In The News… XX The majority of children with type 1 who tested positive for COVID.. did just fine. According to the very first report about this, from Barbara Davis Center, 77% of children with type 1 who had COVID were cared for at home, without complications. The children who were hospitalized were all diagnosed with diabetic ketoacidosis and the greatest risk for adverse outcomes was an A1C over 9. Fewer than 2% of all these cases required any respiratory support, and no deaths were recorded. Kids with T1D and covid fared well: https://www.medscape.com/viewarticle/950277 XX Another study about kids and covid.. The incidence of severe diabetic ketoacidosis among children presenting with new-onset type 1 diabetes doubled during the pandemic period compared with 2019, according to data published in Pediatric Diabetes. This research comes clinics in Canada from March to August 2020 and compared to the same period in 2019. The number of children diagnosed with T1D was similar but the frequency of DKA went from 45% to 68%. What they called severe DKA went from 13% to 27%. Speculation here is that fear of COVID kept people out of the doctor’s office until it was absolutely necessary, but these researchers say more education is needed around DKA even after the COVID pandemic ends. More severe DKA in kids during covid: XX Hat tip to chris Wilson for this.. Dexcom had it’s first quarter earnings call last week. Still expecting G7 to launch in Europe ahead of the US, with US launch towards the end of the year. We’ll find out more details about the G7 at ATTD conference this summer. That’s the advanced technologies and treatments for diabetes conference. Chief Operating Officer Quentin Blackford also reports that quote, “we rolled out an update to the G6 algorithm in the first quarter. We believe this update will drive further reductions to times in which data is temporarily unavailable And I've seen excellent results from the initial launch of this updated algorithm in Canada in 2020.” I’ve talked to Dexcom a few times about how they can make changes to the transmitters and sensors that don’t require regulatory approval – no announcement they just roll them out. Looks like this was one of these. https://www.fool.com/earnings/call-transcripts/2021/04/29/dexcom-inc-dxcm-q1-2021-earnings-call-transcript/ XX Looking at type 2.. A new study suggests that people exposed long-term to certain air pollutants may have a higher risk of diabetes. This was part of the ongoing Jackson Heart Study which looks at African American patients in Mississippi. The study included more than 5000 people ages 21 to 94 in the Tri-County Jackson area.. where traffic is the major source of ambient air pollution. Levels of diabetes and of pollution exposure were assessed 1 and 3 years prior to visits 1 and 2. They reported a diabetes prevalence of 21.8% at visit 1 and 33.2.% at visit 2. Furthermore, 12.5% of those without diabetes at visit 1 developed it by the second visit. Theses researchers say the results provide some evidence that the exposure is linked to diabetes. Apparently there are very few studies of environmental pollution risk factors in communities of color – these researchers say more follow up is needed. Air pollutants and type 2 diabetes: https://www.hcplive.com/view/air-pollutants-associated-diabetes-prevalence -- Quick note about gestational diabetes. Turns out few women who meet the criteria for early gestational diabetes screening receive it. This study was only done at one location, but the authors say it’s indicative of a greater problem. Only 12% of women who met the American College of Obstetricians and Gynecologists’ criteria for early gestational diabetes screening actually received it at a New York hospital. It’s recommended that all pregnant women be screened for gestational diabetes (GDM) at 24 to 28 weeks. Nearly one-fifth of the women who met the criteria for early screening but were not screened were ultimately diagnosed with gestational diabetes further along in their pregnancy. XX Quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Inside the Breakthrough explores the idea of a “Eureka” moment. It’s historical wisdom mixed with modern insight – a little bit history show, little bit science show. The latest episode tells the story of Dr. Banting and the discovery of insulin. Every week is a different story – they’ve talked about snake oil and leaded gasoline & crime – but this week has info about the discovery of insulin that I’d never heard.. Banting had to sell his car to get money to buy dogfood. And of course, there’s scientific info as well. Listen to Inside the Breakthrough wherever you listen to podcasts.. XX Back to the news.. one of the pioneers of diabetes technology passed away this week. Helen Murray Free co-developed the dip-and-read diabetes test, a paper strip that detected glucose in urine. She died on Saturday at the age of 98. Before the invention of the dip-and-read test in 1956, technicians added chemicals to urine and then heated the mixture over a Bunsen burner. The test was inconvenient, and, because it could not distinguish glucose from other sugars, results were not very precise. Ms. Free and her husband figured out how get strips of filter paper to turn blue when glucose was present. The test made it easier for clinicians to diagnose diabetes and cleared the way for home test kits, which enabled patients to monitor glucose on their own. https://www.nytimes.com/2021/05/03/science/helen-murray-free-dead.html And finally, big book launch this week – Chris Ruden is out with The Upper Hand: Leveraging limitations to turn adversity into advantage. Chris is one of our favorite guests – he’s been on the podcast a couple of times. Chris was born with 2 fingers on his left hand and a shorter left arm. He was diagnosed with type 1 at age 19. He’s a champion power lifter – he’s been on the Titan Games and got a big hug from The Rock – and he’s out with a new book. Again it’s called The Upper Hand.. Congrats Chris! XX That’s our first Diabetes Connections – The News. I’m going to do this for about a month and see what the response is. If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – we’re talking to the folks from Zealand Pharmacy about the newest shelf ready emergency glucagon -Zegalogue Thanks and I’ll see you then!
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"The Whole Thing Seems Like a Blur" - Having a Child Diagnosed with T1D During COVID
05/04/2021
"The Whole Thing Seems Like a Blur" - Having a Child Diagnosed with T1D During COVID
It's hard to imagine having a child diagnosed with type 1 diabetes during the COVID pandemic. Most of us rely on community support and in-person meet ups and events to help support and guide us during that first year. But when you're diagnosed during a time of isolation and social distancing, what do you do? Andrew & Emily Hollis join Stacey this week to share their story. Their toddler, Addison, was diagnosed a year ago, a time when only one parent could enter the hospital with her, due to COVID restrictions. The Hollis family connected with others online and even created a line of 3D printed items to help diabetes technology stick better on the body. website (video mentioned in the episode) In Tell Me Something Good we're looking ahead to in person events Stacey will speak at looking ahead to in person events and a new book to give you the upper hand. 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 below Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system. Announcer 0:24 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:29 This week, having a child diagnosed with type one during the pandemic happened to the Hollis family. Addy was just three years old. But her parents couldn't bring her to the hospital together because of COVID restrictions. Andrew Hollis 0:43 We both walk into the ER, and there's the guard at the door and he's like only one adult. And I'm like, this is my kid. I need to be here. This is my daughter. But I also knew that my daughter needed her mom, and I want it to be there for my wife as well. And I know I've tried to put up a little bit of a fight and he's like no one adult, Stacey Simms 0:59 Andrew and Emily Hollis join me to talk about their daughter's diagnosis, finding their way with diabetes during the last year in isolation and their product deck my diabetes. Oh, and chickens in Tell me something good. Looking ahead to in person events and a new book that'll help give you the upper hand. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. I'm host Stacey Simms, and my son Benny was diagnosed more than 14 years ago, right before he turned two my husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that's how you get this podcast. If you're a longtime listener, you know, I tell a lot of stories about how lucky we were when Benny was first diagnosed, we had a lot of positive experiences that can help set the tone. And you know, we already knew some families touched by type one. And we met a lot more in that first year in at person events. It's really hard for me to imagine having to do those first months that first year on social media alone. There was no social media at all back in 2006. So you know, it wouldn't have been an option then anyway. But that is what happened to the Hollis family. Addy is now four. She was three when she was diagnosed back in May. I know a lot of families have had kids diagnosed during the pandemic, we have added quite a few to our local group. And I so admire their strength in dealing with all of this without family or friends who can help in person. Look, the truth is you don't have a choice parents of kids with diabetes. Or if you're an adult living with type one, you just have to jump in and get it done. And the Hollis family did that. But they also found a way to fill a need helping keep gear sticking better with their product with Deck my diabetes. We'll talk about all of that coming up. As always, there is a transcript at Diabetes connections.com and I would really appreciate it if you have a moment to share the podcast if you haven't done that in a while. And you know new people with type one you think they'd enjoyed this episode are some of them are tech focused episodes, please share the podcast that is really the best way to help more people find it. Reviews are nice, but word of mouth from you is a lot better. Alright, Diabetes Connections is brought to you by Dario health. And over the years I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones weekly insights into your trends. with suggestions on how to succeed. Get the diabetes management plan that works with you and for you. Dario’s published Studies demonstrate high impact clinical results. Find out more go to mydario.com forward slash Diabetes Connections. Andrew and Emily, thank you so much for coming on the show. Welcome. I'm glad to have you here. Andre & Emily Hollis: 4:21 Thank you for having me. Stacey Simms 4:22 Yeah, we've got a lot to talk about today. I guess we're going to talk about chickens too, at some point. Andrew, I'll start with you. Your daughter was diagnosed just in the last year. Tell us the story. Andrew Hollis 4:35 Sure. So leading up to diagnosis. My wife Emily, she actually noticed some things in in our daughter and it's got to be the mom thing. You know, she was saying, hey, she's eating a lot. she's drinking a lot and I always chalked it up to she's growing. I mean, there's no history, family history on either side for type one. So we really didn't cross that bridge until maybe three or four weeks into it. And she said, Hey, I did some research on Google. And she might have diabetes, and I was in total denial. And it wasn't until in May, I was at work, my wife sent me a photo of my daughter. And you could just tell she was dehydrated circles around her eyes, white skin, super tired complaining about her legs hurting. And when I got that photo, I immediately called her and said, pack her up. I'm headed home, we're going to the doctors, see if they can get us in today. And our pediatrician got us in almost immediately. It was a Sunday, so it was kind of an off day for them. And we showed up there, they checked her blood sugar and said, go directly to the hospital, do not pass go do not collect $200 go home. My daughter didn't even have shoes on. We were barefoot. We were not prepared. We just rushed directly to the hospital. Stacey Simms 5:48 Emily, let me ask you, What had you noticed? I mean, it sounds like all of the signs were there. And like most of us, you know, it takes a while until you really let all that sink in and go to the doctor. Emily Hollis 6:00 You know, I'd call family members and said, you know, something's not right. She's not acting right. She doesn't want to walk in a chicken coop in the morning to let him out. He says carry me. You know, it was just, I knew something was wrong. But I was a little bit of denial as well. Like, I don't want it to be diabetes. And with no family history, I kept telling myself well, you know, maybe she's just studying a flu bug or something. You know, we had COVID going around, and we had been quarantined since beginning of March. And here it is May. And I'm like, it's probably nothing, but we're gonna take her in anyways. And then when they finally told me it was just like the whole world just, you know, came crashing down. Stacey Simms 6:33 Yeah. Did they test her for COVID? At any point? No, they Emily Hollis 6:36 did not. Because she never ran a fever. She never had like, any congestion or anything like that. It was just strictly the, you know, let's go potty every five seconds and, you know, drink 30 gallons of water, it seemed like and let you know, it was just non stop. And I was, you know, to the point of frustration I felt bad for but then it's like, after we got the diagnosis, I was like, you know, I probably should have taken her in sooner. Even though the doctors assured me that we got her in there just in the nick of time. Stacey Simms 7:04 I think we all feel like we should have gotten our kids in there sooner. I have friends who are nurse, right? You know, I have friends who have type one themselves. And that denial is a very, very strong thing. And we just we don't want to think that it can happen to us. So then you're in the hospital. Did you do the basic training there? You know, three days was she at a danger pretty quickly, Andrew. Andrew Hollis 7:24 So we get to the hospital in what was interesting is being in COVID, lockdown, we both walk into the ER, and there's a guard at the door. And he's like only one adult. And I'm like, this is my kid, I need to be here. This is my daughter. But I also knew that my daughter needed her mom. And I wanted to be there for my wife as well. And I know I've tried to put up a little bit of a fight and he's like, no one, one adult. So my wife went in through the ER entrance. And when they finally got settled in a room she called me and I've been sitting in the parking lot now for almost two hours just worrying my head off just not sure what's going on. And calling friends and family and just about in tears. You know, I'm just telling them, pray, pray hard, because I don't know what's going on with Addy. But we're at the ER, she ended up calling me and said, Hey, they're saying one adult. But bill let us trade off one time per day. The plan at that point was basically to have her spend the nights with my daughter. And then I would give her the reprieve time during the day to go home and sleep and get a shower. We didn't have any clothes with us at the time. So I ran home and started packing an overnight bag and had to hand deliver that to the guard at the front. And then he walked it up to the room for her. It was really interesting to have to take that answer of No, you cannot enter and just have to wonder what's happening. Fortunately, with technology, we're able to FaceTime we were able to talk. And we had a fantastic nursing staff there who actually bent the rules a little bit and said, If you happen to be passing each other in the room, and it takes an hour or two. Oh, that's okay. Stacey Simms 8:50 That's fantastic. I thought that I was thinking more about COVID after you got home and not being able to be part of an in person diabetes community, but holy cow, you know, to be able to live together. Andrew Hollis 9:02 Yeah, it was very difficult. Like I said, when we were passing in the room, that's when the nurses took the opportunity to do training with us. Yeah. And so that worked out really well. We actually ended up several days there. I think she was in the hospital for almost four days, when they were doing the training, we kind of stretched that time to be almost three to four hours together. And we would go home, get a shower, get a couple hours of sleep and come back after dinner and then take over for the night shift. Stacey Simms 9:28 Emily, What do you remember about that time? I mean, learning about diabetes is so overwhelming. I have like some bits and pieces but the whole thing still seems like a blur. Emily Hollis 9:37 Yeah, I agree. It was long. It was very long. You know just in and out and then you know at night it's like this when I it kind of reminded me a little bit of when I was in the hospital having episodes like you're trying to sleep, they're out poking and prodding you every seems like every five minutes. You're like, you know, this child's gone through enough. Leave her alone for an hour. So you don't really get any rest just like I said like labor and delivery. You don't get anywhere. I've been in hospital. And that was very stressful. You would cry for a dad, he couldn't come up there. And then it I mean, overwhelming. It's just very, it was very overwhelming. Yeah, it's a ton of information. They want you to read all these books and all these pamphlets, and you have gotten zero sleep, you're dealing with a child that, you know, does wants mom and doesn't understand what's going on. Why am I getting poked in the fingers? And why am I getting poked in the toes, and I'm trying to sleep and it was very hard, you know, looking back now, she doesn't really remember a whole lot of that today, which is kind of a good thing. I kind of find that as an answer prayer, because she doesn't remember that traumatic time that she had. Stacey Simms 10:38 Andrew, do you could speak a little bit to about the the overwhelming amount of information, I'd love to hear your take on that. Andrew Hollis 10:43 Because I was on the day shift, you know, washing machine, my daughter during the day, I got a lot of interaction with the nurses that were more than just, hey, let me check her blood sugar and make sure she's okay and fix the IV. And there was a lot of conversation, when they presented us with a book and said, Hey, you start reading this, this is good information. And between, you know, the things going on in the hospital, there's no way you can get enough reading and I tried to sit down and read through a chapter and just the medical terminology that's dropped down you having no history for diabetes, and you're learning about aka and you're learning about how to manage blood sugars and how to check blood sugars and what insulin does and how insulin works and how your pancreas is supposed to function. And how a diabetic pancreas maybe doesn't function all the way or at all, and you start getting all of this information piled on you. And then they're like, hey, in two days, you're going home, and you've got to do this and you become almost panicked because you're like, how am I going to manage and I'm sure every diabetic parents been there how am I going to manage this I've had three days crash course on how to be this kid's pancreas and I was not designed to be a pancreas. Definitely was overwhelming and scary. Very scary. Stacey Simms 11:50 Emily take me through when you went home. What was that like? Right back to Emily and Andrew but first Diabetes Connections is brought to you by Gvoke Hypopen and you know, low blood sugar feels horrible, you get shaky get sweaty, even feel like you're gonna pass out there are a lot of symptoms that can be different for everyone. I am so glad we have a different option to treat very low blood sugar gvoke hypo pen, it's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle before Gvoke, People needed to go through a lot of steps to get glucagon treatments ready to be used. And this made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk. Now back to Emily. And I was asking her about going home from the hospital. Emily Hollis 12:58 Well, we actually got to go home the day before my birthday. So that was I was like Addy can't tell the nurses I have to be home for about a birthday. I'm like, Okay, well, we can probably work that out. So we got home. And at that time, she was not on a Dexcom or a pump or anything. She was dealing with a lot of highs more than lows at this point. We're still trying to get her out of the two hundreds and move at home to hospitals. So it was a lot of finger poking and crying and screaming and I don't want a shout out and it was very hard. Nobody likes poking their kids, you know, you have to hold them down. And it's just, it's a lot of a lot of stress. But you try to stay calm and just reassure them that it's for their good you're doing this to help them until they got the Dexcom I didn't get any sleep because you're just constantly worrying about their sugar. Okay, is she gonna wake up is she gonna pass out? Andrew Hollis 13:47 Probably a week and a half after diagnosis. We were driving down the road and daddy goes, there's a sale out there. Okay, we'll put our mask on. We're Let's go, you know, COVID we nobody really knew a whole lot about it. So it will keep social distancing. But we'll check out this garage sale. It turns out that couple had raised a daughter with type one. And unfortunately, they gave us their horror story about her going into seizures in the middle of the night. And that's how they induce you below and we're like a week and a half into it. Unknown Speaker 14:15 Oh my god, Unknown Speaker 14:16 it made us panic. That did not help us understand and feel better. Stacey Simms 14:21 Oh, you know, I say all the time. We were the luckiest people ever. Because it's the stories that you hear in those first weeks that set the tone. And oh my god, how scary is that? Emily Hollis 14:33 Yeah, my daughter is sitting there listening to the story as she's holding the course. Yeah, like she's looking there and her sugar is going up because he's getting you know she's getting anxiety over this. Yeah, like we gotta go we got somewhere to be Stacey Simms 14:46 your home. you're figuring things out. I always tell people the first two weeks of us being home was the worst and then after two weeks ago immediately really almost got better that quickly. He was okay with. He was always okay with finger sticks, but he got okay with the shots like it. really got better quickly, although it's, you know, it's still scary and, and stressful? Did it work out more quickly than you had expected? Or was it more difficult for those first few months? Andrew Hollis 15:09 I think we both found out that children are very resilient. And Addy definitely picked up on things very quickly and understood. You know, after about a week, she kind of understood, okay, this is going to happen. And the finger pokes got a little bit easier. She was always worried about the hospital lancets they were using adult, they were using the adult land sets, which are massive on those little fingers. There's no real estate there and a three year old, the one that we ended up getting from the pharmacy worked a lot better was a lot smaller, wasn't nearly as deep. And so she kind of gave into that really quick. But being on MDI with the shots, the injections, we kind of took turns, giving it until there was a day that I actually hit one of the nerves in her leg. And she jumped through the roof. And I think it traumatized me more than traumatized her. I mean, I I walked away knowing that I just hurt my daughter. And that's not something you want to do. And ever since then she's been like, Dad, you can do it, but only if mom's not around, because mom does it better. Right? So, so I think, you know, she gave into things definitely we get in a routine and and since we started this journey, we've made friends with a lot of people through social media, that has also just began their journey. And some of them that have only been a week or two weeks when we finally get to talk to them. And we try to...
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"You can take it to another level" - Sugar Surfing with Dr. Stephen Ponder (Classic Episode)
04/29/2021
"You can take it to another level" - Sugar Surfing with Dr. Stephen Ponder (Classic Episode)
Dr. Stephen Ponder coined the term "Sugar Surfing" in 2013 to describe a real-time, dynamic system of managing diabetes. In this "Classic" episode we take a deep dive into what Sugar Surfing is all about and get Dr. Ponder's perspective on everything from parenting teens with diabetes to how he feels after 50+ years of living with T1D himself. Dr. Ponder is the medical director at Texas Lions Diabetes camp where he’s volunteered for almost 40 years and in 2018 he was named Diabetes Educator of the Year It’s hard to believe now with CGMs and closed loop systems, but the thinking you’ll hear Dr. Ponder talk about was pretty revolutionary in the early 2000s. This interview is less than a year after he published his book. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription below Stacey Simms 0:00 Diabetes Connections is brought to you by Inside the breakthrough a new history of science podcast full of did you know stuff. Announcer 0:11 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:17 Welcome to a classic episode of the show. I will be so happy to have you along we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, and this time around, I'm revisiting my first interview with Sugar Surfing Dr. Steven Ponder. Dr. Ponder has lived with type one for more than 50 years. He is a pediatric endocrinologist and a certified diabetes educator. Sugar Surfing is about real time management of diabetes. Dr. Ponder coined the term in 2013. But it was a long time coming, a lot of research, a lot of work. It's hard to believe now with continuous glucose monitors and closed loop systems. But the thinking that you're going to hear Dr. Ponder talk about was pretty revolutionary in the early and mid 2000s. This interview comes less than a year after he published his book sugar surfing and by the way that is still free for newly diagnosed people, newly diagnosed families. And I will link up more information about how you can get that in the show notes over at Diabetes connections.com. So what is Dr. Ponder up to these days? Well, he has become a frequent and welcome guest on this show. I last spoke to him for our New Year's Day episode when health care providers were getting the COVID vaccine that was such a joyful show. I loved being able to talk to them some of the first people in the country to get the COVID vaccines and he was one of them. Dr. Ponder is the medical director at Texas lions diabetes camp, where he has volunteered for almost 40 years. And in 2018 he was named the National Diabetes Educator of the Year he also founded a free medical clinic for children all children, not just those with diabetes, our original sugar surfing interview in just a moment. But first, this episode of Diabetes Connections is supported by inside the breakthrough surprising stories from the history of science. Dan Riskin, digs deep and entertains as he connects those old stories to what modern day medical researchers are facing. As you know, 2021 is the 100 year anniversary of the discovery of insulin that is arguably the biggest scientific discovery in Canadian history. This series examines that moment and many others through the lens of Canadian researchers trying to find what's next for the fight against diabetes. I love this podcast I have listened to every episode I highly recommended search for insight the breakthrough anywhere you find podcasts, and a good time to remind you this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Dr. Ponder, thank you so much for joining me. Dr. Stephen Ponder 2:50 Thanks for having me today. Appreciate it. Stacey Simms 2:52 Yeah, it's I'm excited to talk to you. But before we talk about sugar surfing and some of the listener questions 50 years with type 1 diabetes this month, how are you doing? And do you remember your diagnosis? Dr. Stephen Ponder 3:03 Oh, very much. So I was nine years old when I went into the hospital. And I was having fairly mild symptoms, increased urination, you know, weight loss and so on. Parents were puzzled by that took me to my pediatrician. And I don't remember all the details. I do remember getting poked a few times. And lo and behold, later that day, my mom was getting was called by my pediatrician. And I was admitted to a local hospital in an old fashioned ward of all things with four beds. They were they were not separate rooms at that point in time. And I was managed for about nine to 10 days in the hospital. Interestingly, by today's standards, I never saw a pediatric endocrinologist. Of course, there were not many of them in existence in the in the 1960s outside of large, you know, academic institutions. But I was managed by a pediatrician my entire childhood. Stacey Simms 3:55 You were managed by a pediatrician. That's fascinating. What was the treatment? What was the management like? Dr. Stephen Ponder 4:01 Well, not unlike a lot of people today you know where you'll hear stories where the doctor or the nurse handed down a lemon or an orange to practice injections on I really fell into that classic model where that I was given a piece of fruit to inject my insulin into practice. We did have plastic needles back then but the reality was I was sent home with glass syringes and reusable needles which were about 2625 to 26 gauge which by today's standards were huge. In terms of both length and and and width. And I took one shot today of a what what doesn't exist anymore and insulin call lanti le n te the closest thing that comes to it is his mph insulin, the cloudy mph and even many of your listeners won't even know what that is anymore in this day and age but I was treated with lenta insulin for gosh about 15 years until I started medicals School in 1980. And my first endocrinologist who put me on the path to multi dose insulin therapy, and very quickly after that insulin pumps, Stacey Simms 5:09 Wow, that's amazing how much the practice must have changed what led you to become a pediatric endocrinologist? Dr. Stephen Ponder 5:15 Well, I think that diabetes camp when I went to camp in 1981, it was kind of interesting. The person who ultimately would become my mentor was doing a research study for one of the insulin companies that were just rolling out biosynthetic human insulin, up until then we were using animal insulins. And during that study, his research nurse asked me this innocent question about diabetes camp. And she said, Oh, by the way, Steve, we have this camp for kids with diabetes. And I had actually gone to camp, not the same one. But I'd gone to a camp a couple of years after I was diagnosed. So I said, Sure, why not. And I said, it was about that much commitment. And after I went to the camp, in 1981, I just found my calling, I went back every year, and I have been going back every year since and, and about 25 years ago, actually became the medical director of the children's diabetes camp in Texas at the Texas lions camp. And that pretty much sealed my fate in regards to becoming a PDA, pediatric endocrinologist. The friendships I made, and the people I was able to, in some ways, I suppose influence. And it's been something I'll continue to do until I can't do it anymore. And I go back every year, I've spent several years of my life in the town where this camp is located. In fact, we recently, about 10 years ago, they just recently purchased a home not too far from there, which I may well retire to at some point in the future. You know, Stacey Simms 6:52 this is the time of year when a lot of families have already signed up for summer camp for diabetes camp, but there may still be people on the bubble trying to figure out is this the year we do it? What would you say to them? Why is it good for kids? And what about the reluctance of cash? You know, I think it'd be home sick, are they gonna be taking Well, you know, care for as well as I can do at home? Dr. Stephen Ponder 7:12 Well, I think it depends on the camp, the camp that I work at, serves children with special needs during the rest of the summer. And so they're very accustomed to taking children whose parents are, have been generally reluctant to let them out of the home. And these are children and they have visual problems, hearing problems, physical disabilities, cerebral palsy Down syndrome. And so they're extremely capable and competent. And getting the young boys and girls involved very quickly. In fact, as soon as the children are dropped off, they're whisked away to be, you know, to a playground to be active, to get settled into their, their banks and so on. They have really taken it to a fine art to the ability to keep kids from being homesick. Now we take kids that are aged eight to 15. At this camp, and, and yes, there's always a little bit of that at the beginning. For some of the eight year olds, not always, but some of them may struggle a little bit. But they are generally within a day or so just right in the swing of things if not just in a matter of hours into the swing of things. So I think we've we've not had to worry so much about that. Now my medical staff, we take about 75 people on the medical staff and we have 220 campers in two separate sessions. So 440 total, and we have a very high level of competency in that group too. Many of them are former campers, their medical professionals, nurses, doctors, you know, endocrinologist and volunteers. So we I think we've done a pretty good job over the last 35 years refining the methods to keep kids engaged, happy and active to the point that when they go home a week later, there are many of them or would like to say a little bit a few days longer. Stacey Simms 8:52 I think diabetes camp is fantastic. My son is going to have his fourth year fifth year he'll be he'll be a fifth year camper this year. And it's been amazing the friendships he makes the the kids he stays in contact with and the empowerment this camp is where he did his first inset it's where he moved his Dexcom to a different location it's it's just so great for those kids to kind of figure out who they are I think two away from their parents. I'm a huge supporter of summer camp I think that's great. Dr. Stephen Ponder 9:20 It's a wonderful experience all the way around and and and it forges some great friendships as you've already mentioned, that can continue well after camp especially I suppose in this day of social media era of social media. The the campers can stay in touch but you know, Stacey Simms 9:34 don't get me started on the group texting that goes on my kids go to a different a longer summer camp later in the summer to them the group texts that are going it's crazy. But let's let's talk about sugar surfing. You have really hit a nerve I think in a great way with so much of the diabetes community. Sugar surfing and I'll ask you to better explain it but it seems to me is about learning how your body reacts and really Staying on top of your diabetes, more so so that you're I guess less reacting less to what's going on trying to predict more. And instead of making big changes all day long, trying to kind of nudge your blood sugar here and there, am I am I even close? Dr. Stephen Ponder 10:15 Oh, you're absolutely right. That's exactly what it's about. It's management in the moment, as I say, in the book, once you look at blood sugars in a dynamic fashion is something that's constantly shifting and changing, you come to the same conclusion that you have to make anticipatory judgments as well as reactive judgments. And in a perfect world, half of your control is what you plan. The other half is what you have to react to what you have to do based on unexpected occurrences. And that's just life in general. So I think you can take a lot of the things you know about life in general and apply them to diabetes, you just have to be comfortable, or develop a sense of comfort with the various forces that you have at your disposal, that can move your blood sugars around whether it's insulin activity, the food you eat, the types of foods, the amount you eat, when you eat them. And when you boil it down. Diabetes Care is nothing more than a series of informed choices. At the beginning, those choices are in some ways made for you, or at least you're instructed to make these choices a certain way. But many people find that very limiting, and they want to break free of that. And many of them have and have done that well before I wrote this book. And whether they call it sugar surfing or have some other term for it. They're making more management decisions in the moment, which really improves their control and helps him better steer their their glycaemic trend lines in a more normal fashion. Stacey Simms 11:43 Well, let's see if we could get kind of specific if you don't mind. I'm curious, like, how would you tell someone, here's how we're going to use sugar surfing to make your morning and your breakfast, a little bit more smooth, would you mind maybe taking us through that, like you wake up at a certain blood sugar and you're going to eat something for breakfast and how you might handle that? Dr. Stephen Ponder 12:03 Well, a lot of the principles behind sugar surfing are things have been taught for many years, they include, you know, waiting a sufficient time after you take your insulin, to better time it or get it in synchrony with the food you're about to eat. Also understanding the glycaemic or the the fingerprint, if you will, of the meal of the food you're about to eat as well. So you have to match those two things up, you know, I use metaphors a lot. And I will say this to the young children, that, you know, a football quarterback that's throwing a football to the wide receiver is actually throwing the ball to a spot that there's no person at at that particular point, it's released. And you're trying to do the same thing with between timing food and insulin. If If food is the ball, and the wide receiver is the insulin, you know, the the quarterback, that is the patient needs to lead, you know, lead the inflammation of the lead a little bit before you throw the food at it. And in a practical way, what's your surfing, when you're looking at the trend line on your continuous glucose monitoring device, you will often want to wait for a band or an inflection point downward. That generally occurs anywhere from 10 to 15 to 20 minutes, maybe longer, maybe shorter. After that insulin dose is given such that the downward force that insulin is being seen on the glucose trend line, then the when the food is consumed, then it's more likely to be matched up or synchronized with the rising force, if you will, of the sugar that comes from that particular meal, assuming there is a lot of carbohydrates and you have to then adjust that insulin dose according to what you understand about those that particular food. And to be more specific for breakfast, I promote the concept of the top 10 list. And this is not David Letterman perspective. There, everyone has a top 10 favorites, everything you have a top 10 favorite breakfast, the top 10 favorite lunch and dinner. And that can easily be determined over the span of several weeks, you could actually count well how much how many times they this person he decided the other thing anyway, focus on your top 10 list. So if you if you enjoy a certain type of cereal, or oatmeal or toast or pancake or whatever you have for breakfast, then determined over time. And this is through observation, determine what effect those nosepieces meals have in general on your blood sugar, how soon they respond, how how aggressive they tend to be. And then you design an insulin regimen that best matches those and you use your trend line on your sensor to give you the best idea of how well you're matching those two things up to the point that you minimize the rise in the blood sugar. You want to prevent the spike that occurs after the after you eat what most people make the mistake of doing and they've been taught this and it's not always their their fault is they've been told it is to take their insulin at or after they eat. Now while that works fine for a child or toddler who you don't know will finish their meal if it's an older child or an adult who can easily you know, complete the whatever they've been had food put in front of them, then they should be timing their insulin with their food better with the goal to be to minimize the rise that occurs afterwards. Now, that's what the a one c elevations come from. And most people that are down in the six, seven and 8% range is what happens to their blood sugar after the not so much what they are before the. And I'll use this example a lot with people, if I was teaching somebody how to hit the golf ball, and I gave them the proper stance and positioning and so on the right clubs and all that, and I left and strike the ball and 100 times, yet, I never let them see where the ball landed, I'm not sure I'd make them a very good golfer. And that's in a sense what you're doing, you need to see where all that effort really leaves you. And if you're not checking a blood sugar in the next two to three hours after a meal, which a lot of people don't, or they've never been told to do, then you're setting people up in some ways to fail, because the assumption is that the doctor has given you some sort of ratio or some sort of formula. And they've told you to measure certain amount of food. And if you only do those two things correctly, you'll basically hit a hole in one every time and I think anybody who's done this for any period of time knows that that's just not true. And you need to have a different way of looking at this and that you may have to steer it even as it's moving. And that's a more advanced sugar surfing method is is trying to steer the direction of your your trend line after you've already taken your insulin and after you've already taken your food. But I'll tell you I do it all the time. You know, Stacey Simms 16:31 I use it a little bit because that is you say that, and I'll put this back in here. It's a little bit more advanced, you want to be careful with this stuff. But how do you do that? Dr. Stephen Ponder 16:39 Oh, well, you know, it's observation, it constant observation, I glanced at my sensor track anywhere between 40 and 50 times a day. It's not unlike you glancing at the dashboard of your car, when you're driving home, or looking in the rearview mirror, you're constantly scanning your surroundings as you're moving forward. And you have to take that same principle with you. When you sugar syrup. I mean, if you're surfing, you have to be well aware of your of your surroundings. So you just can't act three or four times a day. When you take an insulin dose and or eat food and expect to have the tightest control possible. You have to decide how willing Are you are her how able are you to be more aware of what's going on in the moment. As you see something trending up or trending down, keep us keep more of an eye on it and decide do I need to step in and alter the direction of my my trend line. I mean, as we're talking right now I'm looking at my sensor and I'm straight line at 96. On my particular sensor I've been I've been in my zone between 70 and 140. For the last several hours, I'm pretty much a straight trend line. But when I start to slowly drift down or slowly drift up, I pay a little bit more attention to that. And I want to see...
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Ben West: Using Diabetes Tech to Relieve the "Onus to Bolus"
04/28/2021
Ben West: Using Diabetes Tech to Relieve the "Onus to Bolus"
Ben West was a key organizer and architect of Nightscout and OpenAPS software. Even after all of the DIY and commercial development of the last ten years, he says we've barely scratched the surface of removing the mental and physical burdens from people with diabetes. Among those burdens, he says, is what he calls the onus to bolus - the responsibilities of diabetes that even the most advanced current software can't totally relieve. Ben is now the CEO at Medical Data Networks which has launched its first venture: ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (rough draft) below Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms Stacey Simms 0:26 this week talking to someone who is deeply technical, but also deeply thoughtful, who has been an incredible part of the Do It Yourself movement over the last 10 or more years. But who says we've barely scratched the surface of removing the burdens mental and physical from people with diabetes. So welcome to another week of the show. We aim to educate and inspire about diabetes with a focus on people who use insulin. I am Stacey Simms. And yes, this show is already a little different sounding here at the top no big intro or tease. And that's because my interview with Ben West is massive. It is very long. It is the longest one I have done so far on this show. But it is well worth your time. I am so excited to bring you this interview with Ben Ben West was a key organizer and architect of the Nightscout and open APS software. He is now the CEO at medical data networks which has launched its first venture T1Pal, I think Ben influenced or work with or sometimes both just about every person I've talked to under the we are not waiting umbrella. And if you're not familiar with that, if this is your first episode, welcome, but we are not waiting is kind of the rallying cry that became a hashtag back in 2013. And if you are new, I use it as a keyword you can search for it all one word, we are not waiting over at Diabetes connections.com and see every episode that has featured those incredible do it yourself, people the community that really rallied together and push the technology side of diabetes forward, I believe many many years ahead where it would have been otherwise, as I said, it is a very long interview. But you know, it's a podcast, listen in chunks. Stop, start, you know, however you want to do it. But please, I really hope you'll listen to Ben because he has so much story to tell and a lot of thoughts on how diabetes care really needs to improve. In the short time since I spoke to Ben, there has been a bit of a discussion within the Nightscout group about his business. It is part of an ongoing debate about the future of Nightscout and the future of open source in type one, Ben has the full support of the night scout foundation. In fact, they sent out an email on that and some other issues. And I will link to that in the show notes. I think it's a very good read. In addition to touching on this issue, it is a great way to catch up on what's going on in that space. So we'll get to Ben West in just a moment. But first Diabetes Connections is brought to you buy Gvoke Hypopen . And you know when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar and in the case of very low blood sugar, why we carry emergency glucagon, there's a new option called Gvoke Hypopen, the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the Gvoke logo Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon.com slash risk. And this is a good time to remind you that this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Ben, it's great to talk to you. Thanks so much for jumping on and sharing some time with me and my listeners. Ben West 3:55 Oh, thank you, Stacey. I'm happy to be here. Thanks for inviting me. Stacey Simms 3:59 I'm not even sure where to start. I have so many questions I want to ask you and there's so much history here. So maybe we just start if you don't mind. Back in college when you were diagnosed. You were student right? You were young adult. Ben West 4:12 Yeah, I was a college student when I was diagnosed and I had all the classic symptoms where I you know, I was going to the bathroom a lot and just didn't know what was happening. My diagnosis story is I went through this for probably a week and one night I realized I had gone to the bathroom like seven times in the one night and I realized that means if that's once an hour like what sleep did I get last night. I'm nowhere near eight hours of sleep. This seems like a serious problem. So I went to a health clinic in my college town. And they said well, you're a skinny young adult, so we don't know what's going on with you. Maybe you did eat something and you didn't tell us I wasn't eating anything either. And they sent me home with some pills and said call us in two weeks. Someone through the grapevine heard that that didn't sound quite right actually came and interrupted one of my music lessons and said, you know, you need to go to the hospital there. Oh, wow, they're expecting you there. So I went to the hospital, and they checked me in over the weekend and diagnosed diagnosed me with type one. Wow, Stacey Simms 5:13 you were lucky, right? Lucky that they interrupted your lesson there. Ben West 5:16 Yeah, you know, I mean, I've heard a lot of stories during the work that I do. And yes, as diagnosis stories go that I you know, that's pretty mild. Yeah, Stacey Simms 5:26 I guess I should ask you some technical questions from the very beginning. What were you using? I assume that in 2003, you didn't immediately start tinkering with an insulin pump. Right? You You went on a more traditional routine at the start? Ben West 5:38 Well, I actually had to drive 45 minutes to clinic and Little Rock house in a different part of Arkansas going to college. And I had to drive 45 minutes to get to an endocrinologist and the endocrinologist at that time that I thought I was lucky to be getting into the specialist where they actually deal with, they actually specialize in diabetes here. And I met with the nurse, the PA, and the representative from Medtronic was actually in the room. They actually said, You seem like a smart young lad, we'd like to get you out a pump as soon as possible. And it turned out as soon as possible was like nine, you know, nine months later. So I went through the whole syringes and shots and meters and got on the on the pump. But at that time, they actually told me Yeah, the benefit of going on the pump is dispenses insulin automatically. And in the future, we're going to have CGM. There's some CGM already in the works. Those will be here sometime. And then when you get the CGM and the pump combined, it does like all these things together, right, like so I understood right away what they're talking about in that office very early on. Okay, you got you can measure glucose, and you got this pump. And in theory, it should be doing all of these things together. At that time, they even said, You know what, they even have a patient in California right now, it's got a fully implanted version. So sometime in the next five years, we're gonna have a fully implanted CGM insulin pump combo, it'll do all the work for you. This is all just temporary. That's what they told me. Stacey Simms 7:01 2003 Yeah, just to be clear, though, Ben, the Medtronic rep was in the room with you at your doctor's appointment? Ben West 7:09 Yeah. Wow. You had some introduction? I was actually I was glad they were honestly, that certainly seemed to be the, you know, take these pills and call us in two weeks approach. Stacey Simms 7:20 Sure. Yeah. It also beats a bunch of other people who had their doctor say five years to a cure. I mean, yeah, you know, there's a lot of really bad ways to be diagnosed and to have those first conversations, but man, that's fascinating. Who was the person in California who had an implanted pump and CGM? What was this like, fantasy made up? No, Ben West 7:39 I think I know, I believe him. I, I've toured the Medtronic facilities, again, during the work that I do, and they've invited me over, and they have a hallway of all kinds of awesome stuff that, you know, never made it to market or, you know, there's a lot of cool things that go on behind the doors. I'm still using a 515. I think that was in 2008. So certainly, I I'm a big believer in what they do. There is a lot of potential that I think is clearly been untapped behind this technology. Stacey Simms 8:12 So fast forward nine months, you jump on to your insulin pump. It's not hooked up with a CGM. At the time I would assume. Ben West 8:19 No, it the CGM didn't exist yet. Yeah, it wasn't on the market. Yeah. Stacey Simms 8:23 What was your experience? Like with the pump? Ben West 8:25 Oh, it's okay. It's fine. I preferred it to the shots. But everything's got trade offs. Right. I had at the time I, you know, was going in or wasn't music major. And I so I had performances that are assessed as part of my official grade. And, you know, I'd go in for these performances, and some one of the teachers would tell me hide that thing. You know, they had wires hanging out, right? And I told him, you know, I'm not trying to hide anything, I shouldn't have to hide it. And he told me, You shouldn't show it off. I thought, wow, here I am going for a performance. And that's, that's the last thing I want to be thinking about right now. Sheesh, Stacey Simms 9:00 did you win that fight? Or did they make you hide it? Ben West 9:03 If you're a college student working for a grade? Yeah, you're gonna, you're gonna put it away real fast, right? I mean, that's terrible. Stacey Simms 9:11 What made you start thinking about tinkering with stuff? Because you started doing that on your own is my understanding, right? This was before you met a lot of people in the community that you started, I don't want to say taken apart, I'll let you tell the story. But you started doing this stuff in 2008 2009, Ben West 9:28 the winter of 2009 into 2010. I remember that's when I started with a different focus. Actually, I don't know if you've talked to Scott hanselman at all, but he's, he's known. He's known for saying that every person with diabetes ever, right? The first thing they do is they start working on on something less less than the burdens here. And actually, that was true, right? As I was diagnosed, I had some experience as a computer science minor with some programming, and often my side projects, and I remember I built a dashboard. Actually, in 2003, right after I was diagnosed, that allowed me to enter in all the information into a database, right? Because I was walking around with, you know, three by five index cards, trying to write down all these carbohydrates and insulin injections. And it was getting really tedious. But I did that for years with pen and paper and pencil. And I thought, surely, why are the doctors giving me a hand drawn curves on napkins? Like, what is that about? Why are they sketching on these pieces of paper and the way that they were explaining this to me in the hospital, I thought they were going to show me a full on simulation that showed how my body was working. I've been watching too much Star Trek. Stacey Simms 10:44 Well, you know, I'm with you. We expected things like that, too. When you said you made the dashboard. What did you use for the interface? Was it computer was it? Ben West 10:53 Yeah, it was this was before web 2.0. This was all PHP and HTML. And I realized I was horrified. At the result, I realized I was never going to use it. It was a wall of inputs, where it's just like tons of inputs. And I wrote for times, and dates and readings. And I realized there's no way I'm going to use that. Look at it. Why would anyone use that. That's why I'm going to use pen and papers, because they're the software for this is very difficult. Then web 2.0 happened, there's a bunch of things in the 2000s, as we approached into 2010, that I, you know, I graduated school, I got into industry moved to San Francisco, the hardest Silicon Valley doing, you know, web dashboards for companies, professionally, where we're really solving people's problems where if you have this complicated problem, you can share the link with a view of that problem, and the tools for solving that problem with someone else. And that ability to share that link made the possibility for solving problems collaboratively possible in new ways, transformative ways that really fundamentally change the workflow for solving problems. So that idea really got into my head professionally, as we kind of approached 2009 in 2010. I had tried my first CGM about five years later, right, so around 2008. And the experience with that CGM was was not great. I had to go through insurance, right, they said, I had to get a new insulin pump to get to the integrated system that would read onto the insulin pump. The insurance said, we're not going to pay for that for this new one. And not only that, but according to our policy, you should never have gotten one. So that seems like an issue. Yeah. So it took us It took another nine months, right. And, you know, it goes to the appeals board. And the appeals board comes back and says no insurance, you should, you know, that's medically necessary, she should pay for it. So I finally got the pump in the CGM. And like a lot of people that I see on social media that are excited by the promise of the benefits of this new technology, I tried to really make it work for me, right, I got all the glue out. Skin all louder than the adhesive and I got the I got it covered, right with all the contact stuff. And then I'm going out for yoga, right and it's hot, and I'm doing you know, bendy stuff. And you know, you take off your shirt is a lot of people do. And then you're in a shirt, you realize you're the only one with like all this stuff. And it's like, it's not just one thing, it's the air, you got your pump over there. And he got your CGM patch over here. And it's like, it's not working out like at night. It's itchy. You know, it tickles. Except it's not tickle, it's you realize it's, it's itchy. And then you realize to your heart that that's actually the chemical burn that's happening with adhesive in your skin. And then the things alarming and I'm getting sick of the readings, I get data, what they call data overload, right where it says 240. And I feel like you know, I don't feel very good. And I take a bunch of insulin. And then, you know, an hour later says, well, you're 230 or whatever. So I don't like that. I still don't like that. So I'm going to take even more insulin. And then yeah, three hours later, you know, your doubt at 60. And the things reading 110. Right. And, you know, you're really not feeling good. This thing, made my life a mess. And I decided I'm gonna have to quit. And I was horrified that I was not going to use this thing that I had gone through so much effort to get to this point to be able to use it and that I wasn't going to get any benefits out of it. And the slap in the face for me as someone that was working on these on these systems of systems that were connected through the internet, and seeing the innovation take off and seeing the technology transform, collaborative decision making. The slap in the face for me was that this data was stuck on this little two inch display in my pocket. And there was like there was no way to get that data where other people could see it or like my doctor could see it where like app developers could put it into the simulator and make a simulator if one was missing, and 2009 and 2010 that really didn't sit with me anymore. So I thought apparently I have some skills here. And, you know, maybe I should try applying them just to see if I can get a time series. You know, wouldn't that be neat? If I can just get a little time series, you know, off the device that I use? Wouldn't that be kind of neat? Stacey Simms 15:11 All right, I'm gonna stop you there. But as the time series, Ben West 15:14 just the normal chart that we see where we've got data points along some time. So you've got three hours of time on the chart, just like we see with any other glucose traces data, you've got one dot every five minutes. And that happens, because you get every dot that you see is one of those data points. If you can get a bunch of data points over time, you can generate that time series. Stacey Simms 15:37 Now I know a lot happened, you know, in those years between 2008 or 2009. And then 2013, when you started a tight pool, can you take us a little bit through that time, how you met people how you got connected with the diabetes community? Right back to Ben answering that question. But first Diabetes Connections is brought to you by Dario. Health. And you know, one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels. Find out more go to my Dario comm forward slash diabetes dash connections. Now back to Ben answering my question about how we found and got connected with the diabetes community. Ben West 16:48 I need to get more serious about my problem solving. And that means if I want to help, as soon as it seems to get a lot of ground to cover, so if I need help, I need to ask a well formed questions in a targeted way. And I thought, you know, if I need help, the people that can help me are probably other people with diabetes. And so I started looking around on all kinds of social media, I was on to diabetes, for the really early platforms, and several others, there's diabetes has that and there was there are a couple of organizations before Twitter was even really becoming popular. So I kind of reached out on some of those and found some people disagreed with the things that I was expressing they, some people thought that I should just feel grateful for the devices that I had. Stacey Simms 17:28 I remember this, there was a lot of movement at that time, because I was on some of those boards to where it was, Hey, you know, it's it's okay for now. Like it's better than it was we're not testing with urine. We're not doing right. We're things are changing. Why do you want so much data? He was an interesting time. I didn't mean to interrupt you. But I...
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"It wasn't something I was going to wait for" - John Costik Frees the Dexcom Data (Classic Episode)
04/22/2021
"It wasn't something I was going to wait for" - John Costik Frees the Dexcom Data (Classic Episode)
Eight years ago, you could use a CGM but you couldn't share the data. Dexcom transmitters didn't connect to phones and parents and caregivers couldn't Follow anyone. That started to change - and change quickly - in 2013. That's when John Costik posted a photo on Twitter. That photo showed John's laptop, at home, monitoring his son Evan's blood sugar while Evan was miles away, at daycare. John soon linked up with others who were also working on improving existing diabetes tech. That was the start of Nightscout and a host of other "We are not waiting" improvements, many of which are now integrated into commercial offerings. This interview with John is from October of 2015. He has since left his job as a supermarket software engineer and is currently the director of digital product development at Beta Bionics. That's the company founded by Ed Damiano that's developing the iLet insulin pump. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Below Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of did you know stuff. Announcer 0:13 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:19 Welcome to a classic episode of Diabetes Connections. As always, though, we aim to educate and inspire about diabetes with a focus on people who use insulin. These classic episodes are something new this year, we are bringing back some interviews that are from the very first year of year and a half of the show. We started in 2015, coming up on six years. So there's a lot of episodes that newer listeners haven't heard. And it's kind of fun to go back and give some perspective. I like revisiting. I'm emailing everybody that was featured. If they're getting a classic episode, I'm sending them a text message or a DM or email or you know, I'm just getting in touch with them to say anything you want to share, you know, any new stuff. And it's been really fun to reconnect with some of those previous guests. I’ll be honest with you, I have really hesitated about bringing by older tech type episodes into this run of classics. We did a lot of interviews, like we do now with the pump companies and technology and things like that. And I think it could just be kind of confusing if you're a newer listener, or if you know, you put a classic episode on and you're thinking it's new. But I mean, let's say I run an episode from 2015, when Dexcom, for example, is talking about an upcoming piece of technology that now in 2021, is outdated or never happened. So I'm purposefully avoiding most of those interviews. If you're interested, though, there's a great search box. I'm really proud of the website. It's very robust, you can go and search the 372 episodes that we have put index calm, see how its evolved over time, put in animists and find out what happened, you know, that kind of stuff. Some of those types of interviews, though, especially from the Do It Yourself community are, in my opinion, very valuable and very much worth revisiting. So that is the topic for this week. All right, come with me now let us go back to the olden days of diabetes back before 2013. Now I know most of you that's not the olden days for real. But you think about what has changed since then. Before 2013. It was a time where continuous glucose monitors were used. They were around we were at the time using I want to say the g4 Platinum pediatric. But you know, you could use it, you had a nifty little receiver, but you could not share the data. And it I don't believe in 2013 it was on anybody's phone, you definitely couldn't share. Then we saw the tweet. I've been on Twitter since 2008, thanks to my radio days, but I can't say that I was following john Costik at this time, but he was retweeted by somebody else I knew. And I saw this amazing thing. It was a dad watching his young son's blood sugar. On the dad's laptop. The kid was in daycare, the dad was at home, they were across town from each other in 2013. I started following that dad, john Costik. And of course, I was far from the only one john linked up with others who were also working on improving existing diabetes technology. And all of that was really the start of nightscout and a host of other we are not waiting type improvements, many of which are now integrated into commercial offerings. We are going to revisit that time with john Costik in just a moment and catch up on what he's doing now. But first Diabetes Connections is brought to you by inside the breakthrough on the surface. This podcast is a collection of fun, entertaining and even surprising stories from the history of science. But host Dan riskin digs deeper and he really does entertained while drawing connections between these stories and the challenges faced by modern day medical researchers. The latest episode it was just released a couple of days ago. It is wild Dan explains why it took a dozen people 200 years to discover and then undiscovered a planet. I love this podcast. I'm so glad to partner with them. You can search for inside the breakthrough anywhere you listen to audio wherever you found this podcast and if you are listening through the website or social media, click on Diabetes, Connections COMM And you'll see the insight the breakthrough logo. By the way, good time to remind you this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. A couple of things to know before we jump into the interview, I did reach out to john Costik of course, as I mentioned, and he said let's let folks know I'm hard at work on the islet and its digital products. He is currently the Director of digital product development at beta bionics. He would love that and he says hope you're doing well Stacey and if you are not familiar in the islet is the product from Ed Damiano. We've had him on the show a couple of times beta bionics is the company that is now developing it The islet is finishing some clinical trials this year and should be submitted to the FDA. Pretty soon I am speaking to the folks at beta bionics about coming on the show and giving us an update. So we will work on that as well. But also remember, this is from the fall of 2015, there are going to be dated references. I just want to kind of keep that in your brain. Because while it's fascinating to take a look back, you have to keep in mind as you listen, this is nearly six years ago, but I gotta tell you, I'm just as excited listening back to this interview as I was when I first saw that tweet, John Costik. I am thrilled to have you as my guest this week. Welcome to Diabetes Connections. John Costik 5:41 Oh, thank you. so thrilled to be here. Stacey Simms 5:43 Thank you very much. Let's talk about how this all started. Your son was diagnosed in 2012. He was four. But unlike a lot of people who have children diagnosed at any age, you had more technical knowledge than a lot of us. Can you take us through first, you know your diagnosis story, what happened to lead you to find out that your son have diabetes? And then you know, what made you think to look at the equipment and think well, this isn't good enough. John Costik 6:11 Right? So it was late summer, end of August 2012. And Evan was showing sort of those classic signs that now we know are classic signs, right that he was thirsty all the time peeing all the time and just, you know, little get more lethargic as the day went on. And the 24th was a Friday and my wife Laura went over to pick them up from daycare surprise him with an early lunch. And when she got there that the instructor said, He's so thirsty, he's crying. So she called me and I was out for a run on the canal path. And I remember, she told me what was going on. I said, That's not good. And, you know, he's been really thirsty and really sweaty. past couple days, let's I said just, you know, both of our guts, were telling us, let's get into the doctor. So she called our primary care. And on like most appointments, where they're like, Well, yeah, we'll see you in a couple days, they were really quick to say, Okay, come in, at one o'clock, then, you know, so like a one hour delay from the time they called. So little did we know they I mean, they knew pretty much right away what it was. So as soon as they got there, of course, he had to go to the bathroom. So they did urine check. And he was clearly spilling sugars than they needed to finger check. And he maxed it out. And they basically said, we're gonna call the hospital, you get in the car and just go to the ER, we'll tell them. You're on your way. Stacey Simms 7:42 Did you know anything about diabetes at that point? John Costik 7:45 No, no. And this was Laura was at the doctor. So she called me I was at work at this point. And it was just like, getting hit in the head basically. And yeah, my, my knowledge of diabetes was very limited, much some family members that were type two, and I knew there was no type one and type two, and one was curable, one wasn't. And that was mostly because growing up my mother, my mother, she still is a nurse, but she's retired. But she was the school nurse. And there were a couple kids with type one. And I remember just hearing stories of her having to, you know, go to people's homes to pick up their insulin for them if they forgot it. So understanding that type one was distinctly different, I at least knew that much. But the next three days at the hospital, obviously, they put us through the type one boot camp, and send you on your way, basically with vials of insulin, and, in our case, humalog pen, and we had to sort of figure it out from there. Yeah, they gave us the general guidelines for how much insulin he may or may not need, how much lantis to give him. And we were on our way. Stacey Simms 8:53 Now, it seems like you started on a continuous glucose monitor pretty quickly, how soon after you got home? Did you start thinking about that? John Costik 9:00 So it was mentioned to us while we were at the hospital by the endocrinologist that diagnosed HIV. And at the time was the Dexcom. Seven, and the I think it was still the Medtronic soft sensor at that point. So those were the only two that were shown to us. And he said, okay, it's a lot of information up front. So we actually went with shots and did a lot of finger checking, initially. But one of the one of the things we recognized real quickly, was the ability to to log this data and communicate this data was sort of hampered you know, if the nurse was writing things down in a log book that didn't inform Laura and I how Evan was doing during the day. So the first thing I did was set up a website for logging, you know, nutritional data, finger checks and how much insulin we were giving him. So that was within probably a week after diagnosis had some semblance of that. And that was to prepare him for going back to daycare. So we could all stay in the loop. So that system would send Lauren an email, a text message whenever a treatment was entered. Stacey Simms 10:11 Alright, so then a few months later, though, you decided to go with the Dexcom. g4. John Costik 10:15 Yeah, we started looking around, so around November when I got approved. So I immediately signed up for all the diabetes technology, news letters and everything I could and started, you know, as, as my mind kind of settled down from the diagnosis. You know, I started looking to see what can we use to keep him safer, healthier, both in the short term and long term. And the g4 was approved, I believe it was November in that ballpark of 2012. So I began the process almost immediately to get that it took a while to get it through insurance. Because they actually like to see hypoglycemia before they'll give you tools to avoid it. Stacey Simms 10:52 I know. And if you do, too well, they want they might take it away. That's the craziest part. John Costik 10:56 No, no, your son's still healthy doesn't need the thing that's keeping him healthy. Yeah. So. So unfortunately, or, you know, he did have a low in January, that basically put us over the edge. Then they approved it, and we had it in, you know, the second or third week of February 2013. And that's when we began using that. And does that mean immediately it was sort of a revelation to have this second order data, this trend data along with the blood sugar, just so to know directionally where he's going. And you know, what's happening in those periods that we were blind to before. So immediately after meals, we'd see these big spikes that come right down. But, you know, got our mind spinning on, what can we do to improve that? And at the same time, when we sent him to school, is there any way for us to have continued access to the CGM data? Stacey Simms 11:52 Now you both you and your wife both have backgrounds in engineering? Correct. And so this was something that you looked at, and what did you think of the system because somebody like me, you know, I was a communications major in college, I've worked in broadcasting my whole life. I looked at the CGM. And I thought, Wow, this is so great. How could it get any better? You looked at and thought this is the dumbest device in terms of talking to anything else? John Costik 12:14 Right, but but I understood the position that everything sort of has, has to go through that growing cycle. So I understood that. So I also my wife worked at an FDA regulated company. So we had some idea that putting a medical device online and presenting that data to people is more daunting for the commercial entity than it would be for us as individuals to just extend it. So we I mean, we were never, I never really railed against Dexcom. In at the time, I think they had sort of shown off some semblance of share, or there'd been some patents that came along that indicated that they were clearly moving towards remote monitoring at some point. But it wasn't something I was going to wait for. Right. So I have the CGM. Now this great device, I have a laptop that can talk to it. And I know, I can take that data off and send it to a cloud service. Or, in our case, we just started with a simple Google spreadsheet that we sent the data to. And then I wrote an iPhone app that pulled that data down and your web app, so the school could just see, you know, his current blood sugar and trend. So we integrated that with with our care portal website. And that was powered by a laptop top load. So initially, I just used a repurposed Dexcom zone, what I call a DLL, linking library dynamic linking library. So that's basically just a program that allows you to interface programmatically with the receiver. So I just repurposed that wrote a fairly simple Windows application to just pull that data every five minutes, and then upload it to that. Like I said, that Google spreadsheet. Stacey Simms 14:02 Okay, so I'm just curious, was it hard for you to do that? Did it take you a long time? Or did you sit down and tap the tap tap? You know, you're done. You got it? John Costik 14:10 It wasn't, wasn't challenge. So my background in software, I it was relatively recent background, but it was all focused around windows code, and specifically writing these sorts of libraries for other hardware devices. So I understood if I took their library and put it into what what I would call, you know, a software project, that I wouldn't be able to see exactly the interfaces that could pull that data into my own application. So it really only took probably an hour or two, to write to write the basic windows uploader. Stacey Simms 14:46 And then you put this picture on Twitter. I don't know how long after that said, Look at what we're doing. Isn't that interesting? And did you expect the reaction that you got which was basically jaws dropping around the country, saying how Do I do that? John Costik 15:01 Yeah, that's, I took some pictures of the windows one initially. And that didn't get a ton of attention. And when when I started going after a truly ambulatory like a mobile solution, that is what really drew people in. So I knew Evan was going to kindergarten, I wanted him to be able to remotely monitor, monitor, monitor, no matter where he was, was, he was on the bus, in class moving around, so I knew, you know, even a really small laptop wouldn't cut, it just wouldn't be convenient for him. But if I could get a small cell phone, smartphone and do that, great. So I started in Android was really the only choice they make much easier to communicate with USB devices and other accessories. So I started working on that, beginning of May, in about a week or two into may, I had sort of unraveled how Dexcom was communicating with the device and, and what that communication looked like and how to interpret that, and then send it along to to a web service to a cloud service. So those tweets got people's attention. And I think I chimed in on on a bulletin board somewhere. And that's when Wayne Desborough reached out and said, Hey, I'd really like to do the same thing for my son, he's his room is too far for the receiver to be in our room and reach him. So we'd like to do to build a remote monitoring system. Stacey Simms 16:36 Okay, so let me stop you there and tell me if this is all correct. Lane despereaux. Now with Bigfoot biomedical, yep. He has an engineering background as well, I think you work for Medtronic for a while, but he had designed his own home display system. He He's the guy who came up with the nightscout name, right. But he didn't connect it to the internet. John Costik 16:56 Now, he, he did so ln really took my uploader and created that open source nightscout back end. So the the website you see today is is an evolution of his original design, and uses the same architecture. So a Mongo database, and a Node JS application sitting on a web server somewhere, and allowing people to view you know, their data or their loved ones data. Okay, so that that core was was Lane's work. And later, he brought on Ross nailer, software engineer, and they sort of refined that and got it to that point where, where it could could go live. So for my part, they, they took my uploader code, you know, I gave that to them. And I took their chart code, and put that into, into our home system. And that's sort of where it took off. So in the middle of the summer, I started using the Pebble watch, because I my whole goal this whole time was just how simple can I make this? How glanceable and easy can I make this for everybody involved, because I don't want to stare at the chart all day at work, I just want to know when something's up, I want to go on my day, but know that this system will tap me on the shoulder when it needs to. So Pebble watch was was a good way to do that. Because you can make it vibrate and do all sorts of things to get your attention. Stacey Simms 18:25 Okay, so now you've got it on your Pebble watch laying despereaux and other people that you've mentioned, are coming up with their own additions. When did what we now recognize as nightscout? When did that all come into play? Was it a few weeks or months after you all kind of shared your codes? John Costik 18:45 So I think lane started using that name fairly early on. And we all met Finally, actually, Lane was in Rochester, New York for a sailing competition that I believe he won at the end of August 2013. So he actually was at our house for Evans first diversity. And that was a great time when he and I got talking...
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"If You Can Dream It, You Can Do It" - Don Muchow Ran From Disneyland to Disney World with T1D
04/20/2021
"If You Can Dream It, You Can Do It" - Don Muchow Ran From Disneyland to Disney World with T1D
This month, Don Muchow became the first person to run from Disneyland in California all the way to Disney World in Florida. It's a pretty amazing story when you consider that when Don was diagnosed with type 1 back in 1972 they told him that exercise was too dangerous. He wasn't even allowed to take part in his school's gym class! Don shares how he made the turn to ultramarathons and beyond and what led him to make this incredible coast to coast journey. He had to contend with COVID delays along the way and got a terrific surprise when he arrived in Orlando. Plus.. what's next? He's already thinking about another incredible goal. In our Innovations segment, And some of our favorites have a Stacey mentioned a new link for 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 below Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week Don Muchow just finished an incredible run from California's Disneyland all the way across the country to Disney World in Florida. diagnosed with type one as a child, Don wasn’t an athlete in his early 40s. He decided to try working out but then he got some bad news. His eyes were in trouble. Don Muchow 0:47 It was like a punch in the gut to get that laser retinopathy treatment after I had made the decision to be healthy. And I made myself a promise that if I could just have a do over, I will do it over and I just kind of not looked back since then. Stacey Simms 1:06 He’s definitely not done. He’s 59 and he has yet another big goal. I'm so excited to share his story in our innovations segment, a seven day pump inset and some of our favorites. have a little fun with a doughnut demonstration. 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. You know we aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new welcome. My son was diagnosed with type one back in 2006. Right before he turned to my husband lives with type two diabetes. I don't have any type of diabetes. I spent my career in broadcasting and that is how you get the podcast. My guest this week. Oh my goodness is Don Muchow. He made national news last week when he finished a coast-to-coast run. He calls himself a type one diabetic extreme ultra runner and Iron Man boy is he ever I wanted to read you a couple of highlights from Don's website. So here's what he did before the accomplishment we're going to talk about today in 2019, who ran across Texas he holds the fastest known time record for doing that. 2018 he completed relay Iowa which is 339 miles in 2018. Sioux City to Dubuque first ever solo finisher of the longest us relay first ever T one D finisher 2017 capital to coast race 223 miles, Austin, Texas to the Gulf of Mexico first ever to Indy solo finisher, and on and on and on, I will link up Dan's website over at Diabetes connections.com and in the show notes, and do yourself a favor because that wasn't even a quarter of the list of stuff that he has accomplished. And as you heard, he was not always an athlete. His story is even more amazing. When you find out that when Don was diagnosed in 1972, he was told no exercise too dangerous with type one, not even gym class, he was not allowed to take gym class, I will let Don tell you how he overcame that type of thinking to become the incredible athlete that he is now and he has great advice for those of us who want to be more active but are not ever going to run across Texas, let alone across the country. And that is coming up in just a moment. But first Diabetes Connections is brought to you by Dario. Bottom line you need a plan of action with diabetes we have been very lucky that Benny’s endo has helped us with that, and that he understands the plan has to change as Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of A1C within three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my Dario.com forward slash Diabetes Connections for more proven results and for information about the plan. Don, thank you so much for making some time with me. I really appreciate you coming on. Don Muchow 4:26 Thank you very much. I'm happy to be here. Stacey Simms 4:28 How are you feeling this morning? Don Muchow 4:29 Oh, hungry and tired. Oh Stacey Simms 4:33 my goodness. You know, I'm not sure where to begin because there's so much to your story. But I guess let's start with my biggest question. And I always have this for people who are ultra athletes and do these incredible incredible feats. Can you tell us why you would do something like this? When did the idea enter your brain that this was a thing you wanted to do? Don Muchow 4:55 We started thinking about the run about three years ago. And our primary objective was to get the word out to other type ones who are living with the disease. That while exercise can be justifiably scary, because low blood sugars can lead to seizures, and consciousness, even death, the long term complications from avoiding it entirely as I had done for the first 30 or so years, since my diagnosis are really pretty awful, I wouldn't compare it to the remote possibility of a trip to the ER for incredibly low blood sugar. And it's a snake in the room that you have to face. You can't ignore it, and you can't freak out about it. Stacey Simms 5:42 You said we and our there what Tell me about your team. Before we go any further. Don Muchow 5:47 I often tell people somewhat jokingly that I just do the running. And my wife and crew chief Leslie does everything else. That's actually pretty close to true. I started calling her mission control. Once we got started, we got closer to the Space Coast. Stacey Simms 6:01 That's great with a run like this. And well, I want to talk about, you know, other feats that you have done. And you already mentioned, you went so long without regular exercise. There's so much to this story with this run. What did you think because you started this mean, COVID really threw you for a loop, we'll get into that. But when you were starting out what was the plan, Don Muchow 6:22 we had spent probably about a year getting the route laid out so that it was safe enough to do, we were conscious of the fact that some people might want to do that same route again. And the last thing we wanted was for someone to die trying. When we started thinking about sort of putting feet on the ground, we went out and scouted the route in the car and made sure that I was comfortable with a train and with the route that I would be running. And we still run into obstacles, but it sort of helped us get our mind around the idea of what it would be like to run across the country. Wow. Stacey Simms 6:58 What kind of things do you look for when you're scouting it out? Is it roads? Is it towns to be able to drive on? Don Muchow 7:05 You're right on all three of those. We wanted a route that I could run that the van could drive as well. Wouldn't be much use, especially with type one, if I ran 100 miles of trail in Arizona, and there's no way to find. So we wanted a route with wide shoulders, relatively low traffic that the van to drive most of when we were in metropolitan areas that had bike trails. That was the one exception where we just kind of let me run on the trails because they had always pop out to CBS or gas station or something like that. Stacey Simms 7:39 And why Disney to Disney was that geographic? Are you a fan? Don Muchow 7:43 I am a fan. My wife and I are both big fans. Disney has been credited for saying something about how If you can dream it, you can do it. And that seemed like a sort of an anthemic statement, but really the the actual route from Disney to Disney was a bit of a happy accident. We originally planned to run from basically from LA to the Space Coast. And a friend of mine said, Oh, well, so you're running from Disneyland or Disney World. And I you know, I didn't have that idea. But that is brilliant. We decided to switch it up just a little bit to do the Disney Disney piece inside the transcontinental run. Stacey Simms 8:18 Very cool. Oh, that's great. So you started out I remember when you put your feet on the ground and got going. And at that time COVID was not really a thought. When did you realize that you were going to have to make some changes Don Muchow 8:31 that occurred to me in I think it was about end of the second week of March of 2020. When we were making a restock stop, and big spring, Texas, and we stopped at Costco and they were out of water and out of practically everything else we needed. And we began to get Inklings that it was going to be impossible to resupply the van and we were looking at lockdowns in my hometown. And we thought about, okay, well can we make it to Dallas. And if we did, you know, there will be facing an empty refrigerator. So we decided to kind of be planful about how we were going to sort of pause things and pick it up when it got safer to do so. We had to pause on March 22 or 24th. I don't remember exactly what we picked up again on September 24. ran for about a month and had to pause again because the numbers east of Texarkana were looking bad. And then we finally resumed the last third of the run and on March 2 of 2021 and made it to the coast. Stacey Simms 9:40 Wow. And pardon my ignorance here when you're marking an event like this or a feat like this. Is it days, hours just miles done? Are there differences in how you market and how if somebody's officially marking it Don Muchow 9:52 mentally I'd look forward to the next big town. Whatever comes actually the next town of any sort. You Usually what that means is, you know, gas stations, lodging, that sort of thing. And when you're out there in the middle of nowhere, that takes on a special significance. In terms of documenting the run, we originally set out to document it more thoroughly when we thought that there would be records that we might bump up against. When we found out that on this particular route that no one had actually done Disney the Disney before we relaxed a little bit, but still kept marking our progress, we have a live GPS tracker that kept track of where I was, every moment, I have two GPS watches that have my workouts recorded. And we also have the recommendation of an organization called fastest known time, timestamp selfies next to unique landmarks. So in terms of marking our progress, very, very hard to cheat on a route like that if you have to be at a certain place at a certain time, and the only way you can get there is to run. So we documented our progress. using those tools. I Stacey Simms 11:03 guess what I also meant was in terms of the time break that you had to take because of COVID do you count just the time running then for your you know, the way you clocked it, Don Muchow 11:13 we did taught up the time total time we spent running believe between the two Disney's It was 88 days, and it was 90 coast to coast records organizations, especially fastest known time, care about the entire time it took you especially if there's no starting gun, that's typically where people like fastest, sometimes calm pick up. It's elapsed time. So if you're visiting the bathroom, you're still on the clock. If your technique picking the lunch break, you're on the clock, we realize that while this might be the fastest known time from Disney to Disney, since it's the first, it'll be a record that's easy to break for anyone that serious about it. It really will only take them about three months to do it at my pace, and many people are faster than I am. So we take comfort in the fact that we drew some attention to type one and exercise. And that this was a bit of a bit of a media event because it was the first Yeah, definitely helped us get the word out. Stacey Simms 12:10 And I don't mean to take anything away from it. I'm just trying to figure out so do you have to count it on February to April? Or do you just count the time running? I guess would you have to count the COVID break? Right back to Don answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen and our endo always told us if you use insulin, you need to have emergency glucagon on hand as well. Full blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice very very low blood sugar can be very frightening. Which is why I'm glad there's a different option for emergency glucagon it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to use with no visible needle. You pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit g vo glucagon comm slash risk. Now back to Don. And he's talking about how the timing of this amazing run is recorded. Don Muchow 13:21 Personally, I count the whole time. It is what it is. Stacey Simms 13:24 I have a few more questions about the run itself. But I want to go back and talk to you about you mentioned the 30 years you spent not really exercising, it's hard to believe but when you were diagnosed, you were told it was too dangerous. Is that really a factor said tell us about that. Don Muchow 13:41 I was diagnosed in 1972. And people who are considerably younger than me may not realize that glucose meters weren't invented or weren't publicly available until the early 1980s. My first glucometer was this massive brick shaped thing that I got, I think it was either 1982 1983 prior to that, really the only way of telling what your blood sugar was not what it is. But what it was, was with a urine test and all that really told you as past history. It was justifiable given the circumstances, that if there was no way other than a trip to a hospital to have a glucose test done, that if you couldn't tell how low your blood sugar was, and you were feeling awful and faint, and you know, on the verge of passing out that maybe it wasn't so good to do things that cause a drop in blood sugar problem was that, you know, after 30 years, glucose meters had been around for a while at that point. And I didn't change the advice I was following. So that's on me. But I think a lot of people even with glucose meters are justifiably scared that if they can't stay on top of a severe drop in their blood sugar that maybe this is not for me to do. We face challenges during these long runs. And because I'm type one, like a lot of you out there, you know I gotta face the same challenges and Many of them aren't easy, but I just keep thinking about the turn, I almost took down the road to being visually impaired and having circulatory problems. And I'm just so glad that I went ahead and face those risks. Wow. Stacey Simms 15:15 Do you remember what it was that made you think I've got to move forward with exercise? I've got to change this. Yes, please, please tell me what you answer that the first thing you did wasn't a marathon. Don Muchow 15:27 Not a marathon. It was in 2004. I had gone to see my retina specialist who had been monitoring proliferative retinopathy and my left eye. And it had come to the point where he recommended a laser retinopathy treatment, I think those are deprecated. These days, I think they use an anti inflammatory injection now. But back then the recommended treatment was laser treatment of the blood vessels in the eye that were leaking. And it left me with a blind spot. And I asked my retina specialist at the time, well, what does the future look like for me? And he basically said, Well, I'll have more blind spots if you don't do anything. And I had already made a decision that year, that after finding out was short of breath going up the stairs, that I wanted to be healthy, signed up for 5k turkey trot, and it was like a punch in the gut. To get that laser retinopathy treatment. After I had made the decision to be healthy. I made myself a promise that if I could just have a do over, I will do it over. And I'm just kind of not looked back since then. I actually have a little bit of a concern that for many years that once I got to the point where I finished a run across the US that I would turn around and go Okay, now watch, and and not run anymore. But I've taken up swimming. So hopefully that'll help. Stacey Simms 16:51 And I'm trying to do the quick math, you're done. But how old? Were you in 2004? Don Muchow 16:55 I think I was in my early 40s. I don't know the exact age, I think it was 42. But I'm not sure about that. Stacey Simms 17:02 I only asked because you didn't change your mind when you were 22. Right, you didn't start exercising at a super young age. I think 42 is still very young. But it's not, you know, you're not a kid, if you're making decisions a little bit later in life. And the results are phenomenal. I mean, I just can't believe that, Don Muchow 17:18 I actually think it was something of an advantage to start once I had a gray beard because I have lower expectations of myself. And I think as you push the distance, it's good to remember that not everything in life is achieved by going all out. I progressed slowly to longer and longer distances, probably around 2011, I had gotten used to running marathons and I realized that wasn't getting any faster. There was an ultra, I think it was a 50k in Fort Worth that came up on the radar. And I thought to myself, well, that's only five miles longer than a marathon. Let's try it. I did find it. There were only 400 people in that race that signed up. I think it was like 25,000 or something and signed up for the marathon, but only 400 for the ultra. And it was kind of a nice feeling to realize that, you know, the bulk of the work was behind me. And really now it was just seeing how far I could go. And I began to realize that, you know, if I sort of run my own pace, which is relatively slow, that pushing the distance was a more interesting challenge to me than trying to run faster and risk injury. Stacey Simms 18:27 By the way, as a mom, I have to say, is that a Dexcom? Beep You good? We need to take care of any. Don Muchow 18:33 We're good. I have lunch just a little while ago. So it's probably complaining about that. Stacey Simms 18:39 I'm sorry to be if that's a rude thing to say. Unknown Speaker 18:41 No, no, no, no, it's we're all tribe. Stacey Simms 18:45 Thank you. So let's talk. I have some questions from my listeners. But let me ask you a couple more Disney...
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The Magic of Disney, with Type 1 Diabetes (Classic Episode)
04/15/2021
The Magic of Disney, with Type 1 Diabetes (Classic Episode)
A Disney vacation can seem overwhelming, even without diabetes. Add T1D to the mix and going to Disney World or Disneyland seems like it may not be worth the stress. This Classic Episode has great tips and advice to have fun without slowing down (much) at the Disney Parks. Stacey is joined by she has three generations of type 1 in her family. We talk about dos and don't for getting a disability pass (and how to decide if you need one), making do without carb counts and managing everything from hydration to ALL the walking at the parks. This episode first aired in December of 2015. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (beta version) Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of Did you know stuff? Announcer 0:13 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:19 Welcome to another classic episode of the show. As always, we're really glad to have you here. And these episodes, give me a chance to take a look back at some of the real early interviews we did here on the podcast, you might have missed this one. From December of 2015. All about going to Disney World. A Disney vacation is really like no other. And not only is it pretty expensive, but to get everything you want. You really need to have a plan. Seriously, have you been there, you need a plan. Now I have to tell you true confession. I am a bananas, Disney planner. I absolutely love planning trips like this, this may not be your cup of tea, maybe you're somebody who just goes with the flow. But I really think that if you have diabetes, you know if your kid or you as an adult, are going on a vacation, where you have to do this much walking this much line waiting, although we don't wait in lines, and I'll share my secret in just a moment. This much weird food or strange food, the whole Enormousness that can be a Disney World vacation. Once you add diabetes to the mix, there's a lot to think about. That's why I was really excited to talk to Robin Adams. She is a Disney planner. She's a travel agent, she also runs a really big group that goes to Disney World there. They're on Facebook as well. She just knows her stuff. She also has a husband, a son, and a father in law who all live with type 1 diabetes. And as you're listening and planning vacations, you know after people have been vaccinated, and things are starting to open up again, as you're planning vacations and trips and you know, going back to Disney parks, or maybe the first time you're going I really hope this episode will help. I have to tell you though a little bit about my planning and why I am the way I am and I kid you not we really do not wait in lines. My family has been very lucky. We've taken several big trips to Disney World. We haven't been to Disneyland. But we've been to Disney World several times, not including quick trips. My parents are two hours south of there. And we do go to the friends for life conference which is in Orlando in July usually. So I'm not counting that because that's not a true what I would say you know, Disney couple of days or even a week in the park, that kind of thing. vacation. The very first time we went was with Lea was just four years old. And we just went for a day. We didn't even take Benny he was one left with my parents. We drove up from their house took that to overdrive. We ran all over the place. We had a great day it was in January, it was cold. So you know there really wasn't anybody there. But we met princesses. We had a princess dinner and then we headed home. So that was the first time the second time when I took both kids. I didn't plan well at all. We arrived at one o'clock in the afternoon during spring break. Those of you who have been there and done that are either laughing at me or horrified. I've never seen that many people in one place in my entire life. We got to the Magic Kingdom at one o'clock. And it was so crowded. I didn't think we'd be able to move. And I was really concerned for my kids safety. We stayed I want to say an hour, I think we did. I don't even know if we went on a ride or did anything or saw parade. I think we saw one parade because we were just stuck there on Main Street. And then we left and we spent the afternoon at our hotel with the pool, which the kids thought was the greatest thing ever. I mean, they had such a fun time in the hotel. And then the next morning, we woke up super early and got to the park, I have a picture of us on the first boat from the Wilderness Lodge resort. And the moon is still out. I mean, we got to the park as it opened, you know, and it was spring break. So it's probably open at seven o'clock that morning and had a great, great three hours. And it was amazing. And that was the beginning of my Disney planning. And I have never gone back without a better plan that I'm going to talk more about it after the interview. Just some tips and tricks that I can share with you diabetes aside what I think you can do to make your vacation a lot more fun and make your money go further. But that is neither here nor there. We will get to Robin Adams to true Disney with diabetes expert in just a moment. But first, this episode of Diabetes Connections is brought to you by inside the breakthrough. If you're intrigued by science, you don't get excited about the process of discovery and want to have the best stories at your next dinner party. This is the show for you. In the current episode they're asking and answering just snake oil actually contain snakes. Host Dan riskin is phenomenal. He is very entertaining and he really digs deep into these stories search inside the breakthrough anywhere he listen to podcasts. It'll be wherever you found this one. And this podcast is not intended as medical advice if you have those kinds of cases. Please contact your health care provider. My guest for this classic episode is a travel agent, a Disney planner and the organizer of the diabetic Mouseketeers event. And that is happening this year, Memorial Day weekend, I will link up the information from her website. And you can learn more about how Robin Adams wants you to meet families share stories and experience the magic. It was excited to talk to Robin not just for the Disney experience here. But also because as I mentioned, she has three generations of type one in her family. So she really knows her stuff. quick heads up, we spend the first few minutes of this interview talking about her family and those three generations. If you're just here for the Disney stuff, then you should fast forward about seven, eight minutes in that we pick up the advice for going to the parks. Robin Adams, thank you for joining me. Welcome to Diabetes Connections. Robyn Adams 5:59 Thank you for having me. Stacey Simms 6:01 Before we talk Disney and we're going to talk a lot about Disney. Let's talk about about you tell me about your Diabetes Connections. Because this isn't just your child, your husband has type one as well. Unknown Speaker 6:12 Yes, my husband had been married to for 19 years was diagnosed when he was 12 years old. So it's been an you know, part of my life for I've known him for 21 years now. So it's been there for a very long time. And then our son was diagnosed at age four, after we've been married for seven years. Stacey Simms 6:32 What's that, like, from your perspective, and I'm sure your husband's is a bit different too. But when you have lived with type one with your spouse, but then your young child is diagnosed, how different was that? Robyn Adams6:45 It was very overwhelming because the way we handled it in our marriage is my husband already had a mother. So therefore, I did not mother him I did not hound him. I did not say Did you check your blood sugar today? Are you supposed to be eating that? You know, I had no involvement whatsoever. He handled everything. Then there's also the drawback to that in the essence of I didn't really have a fully under standing of the disease. Because I was, you know, I was always kind of at an arm's length distance a little bit out of respect to him. Because I didn't want to hound him. I didn't want to stand on top of him. And you know, mother him basically. So we always kept there a little bit of distance. So when my son was diagnosed, Rob was still doing it the old method of three shots a day, using two different types of using the in in the art, he was doing the old fashioned mph method. Wow. And so he was not carb counting. He was not on a pump or anything. So when my son was diagnosed I was I literally had this fear, go through my head, oh my gosh, we're gonna get divorced, I'm going to kill my child. I don't know what I'm doing. No clue whatsoever. And since Rob was doing it, the old method, it actually was a crash course for both of us, which was wonderful. And honestly, diabetes did nothing but bring our family closer together. It gave me much more insight as to how it affected him day to day. He helped me see what my son was going through. And just he really helped to keep me grounded from not overreacting to certain things to show him that yes, he can survive. Yes, he can do this. It's okay. Not hovering, and just helping him live a full and enriched life because that's what Rob did for years and years through college. He was an avid rock climber, camper, hiker, everything. And he did all of that on, which kind of astounds me doing it on the NVH method, and not carb counting kind of overwhelms me with that thought. Yeah. Wow. So Stacey Simms 8:57 did he change his diabetes management at all, seeing what your son had access to? Robyn Adams9:03 Well, it was interesting the day that Robert was diagnosed, that Robert was diagnosed on a Tuesday, Rob was at his doctor on Monday right before getting fitted for his pump. Wow. And they he was supposed to be in his own carb counting education class Tuesday afternoon. Well, at that point, we are admitting Robert into the hospital for diabetes. And we had he had asked his doctor the day before he had said, we're starting to see a few signs and robber what, what do we need to do about this? And the doctor said, we'll go ahead and take a fasting blood sugar the next morning. And so we did it. We've checked Robert blood sugar ever since he was six months old. I checked it every six months pretty religiously, just keeping an eye on it. And but I tell you that one morning that was the hardest blood sugar to check because we had actually started seeing signs at that time. And we knew for a fact that's what it was and We checked his blood sugar was 158. And we called the pediatrician. We call him my husband's endo, and said his blood sugar is 158. And the guy said, well, that's not too bad. We said, this is fasting blood sugar. I said, Amy, call your pediatrician right away. And by the time we got into the pediatrician, his blood sugar was 425. And we were off to Scottish Rite. And that was it. Stacey Simms 10:23 Now, from your son's point of view, though, you're four years old, and your dad has type one. And your dad is about to be doing the carb counting classes and the pump classes and a lot of things that you yourself as a four year old are going to be going through. Was he kind of do you think he thought at any point? Well, everybody's dad, everybody goes through this. Robyn Adams10:41 Already? That was cool. Oh, yeah. He can't wait for me to be diagnosed. Yes, Robert, is now 12. But uh, you know, for years, it was the topic of conversation of Okay, Mom, what are you gonna have diabetes? What are you gonna join our club? Yeah, he doesn't under you know, he understands. But at the same time, it's like everybody else has it. Why don't you you know, and see on top of that, to my husband's father also has type 1 diabetes. Wow. So it's just it's a family tradition for this whole sailing. And Robert is waiting for that shoe to drop for me. That's funny. We were very fortunate when he got diagnosed at four, because he just he doesn't understand life without it. And he grew up watching his dad do shots and check his blood. So he became more like his father. And it just became even more of a way of life for all of us. Wow, Stacey Simms 11:33 that's a remarkable story. Is your husband's father still alive? Robyn Adams11:38 It has. Stacey Simms 11:40 I always ask about things like that. Because I think for some of us, who had no experience with type one before my child was diagnosed nine years ago, and I didn't know anything about type one, really. So I'm always impressed. I think that's the right word. But I always like to hear about older people. How old is he? Robyn Adams11:57 He is 7374 74. And he was diagnosed in his 40s. Wow. Which is, to me just wonderful that they caught it at that time as type one and did not try to label him as type two, Stacey Simms 12:15 right? We hear a lot about Miss diagnoses like that. Robyn Adams12:18 Exactly. That was that's always my biggest concern. When I do hear about adults going in and being diagnosed. And either their, you know, the parents of children that I know or spouses and I'm always so quick to say please, please make sure that they truly truly know that it's type one and not type two, just because when it goes overlooked for so long, they get so sick. Stacey Simms 12:42 So, um, do the three of the boys talk about this? I mean, it just must be so funny to have. I don't know if that's the right word. Let me start again, is it do the three of them kind of compare notes? Robyn Adams12:56 They do to a point, Wesley does still do the mph method. He's 70 or 74 years old, he's been doing this for a long time, you're not gonna change his method. You know, that's just the way it is. So they do compare stories, and Rob will try to give them helpful tips or try to say, you know, I really wish he would try to do it this way. And now He's good. He's got his way down. But you know, you just have to look at it from the perspective of the individual with the disease. You know, they're the ones who juggle and manage and live with the disease, if they're setting their routine and their way of doing things. It's really hard to get somebody to change, you know, because change could mean big things, good or bad. It can mean big. So we just try to step back and, you know, respect and understand that that's his perspective. But they do they talk about it a lot. And it's nice to have, you know, to two boys in the kitchen, treating loads together, things like that, you know, there's just kind of that understanding in the household that okay, this is what it is. We've got to stop, take care of it, and then we'll move on from there. Stacey Simms 14:07 Let's move on to talk about Disney. How did you get involved? Your certified Disney planner is something you always loved. Robyn Adams14:16 It is. I mean, I started going we started taking Robert when he was three. And it just kind of grew into a natural obsession to where we were going several times a year. And then a few years ago, we were in a position where the main business that I had, I was a home appraiser was starting to dwindle due to the economy. What gave you the idea to take your Stacey Simms 14:40 Disney planning and diabetes and put the two together? Robyn Adams14:44 Seeing the need for it. Seeing the questions on Facebook pop up over and over again. I'm going to Disney What do I do? Seeing the overwhelming feeling and feeling the fear come through people's post of how they just needed somebody to hold their hand for a few minutes to say you can do this. A lot of people once you've done Disney, you do understand you know, the loops, you know everything. But especially when you've been a first timer and you've never been, first of all Disney in itself is such an expedition, just dealing with all the ins and the outs, the resorts, the dining plan, the tickets, the four parks, the two water parks, then you've got Disney Land with the two parks over there, the rides, the attractions, the characters, taking all of that in, because you're investing a lot of money into this trip. So you want it to be just perfect, then when you throw diabetes into the mix, knowing that that could make your magical trip that you want to be so perfect, quite imperfect. It's a very daunting task for individuals. So I started to hear that in the post and started to see it and just realize that there was a need for it. So I just decided that Well, um, you know, this is what I do, I'll just start kind of tailoring all of my planning towards focusing towards families with diabetes. Stacey Simms 16:09 And you do an event, we'll talk about the event once a once a year, right for families with diabetes. But before we talk about the event, let's get some advice. I mean, we've been to Disney many times, I'm what I would call myself a crazy planner. So I I take care of stuff. I'm good to go. I wasn't all that concerned about diabetes. But that's me. So if for people who are concerned and really worry, you know, where do you start them because as you said, Disney, in and of itself is a huge, huge vacation to plan. Robyn Adams16:42 Really, I start mostly with explaining. For those who have never been to Disney, I explain what seems is basic knowledge to you and me who have been there 100 times explaining that they can take food into the parks, they can take a stroller into the parks, they can take their supplies into the parks. And you'd be amazed at just hearing those three things. Make them feel 100 times better. You know, just the simple fact that you can take in low blood sugar snaps you can take in your water, things like that just immediately helps parents feel a little bit better. Because that's their biggest fear is what if I get stuck in a line with a low blood sugar? What do I do? They need to know that they have access to their supplies at all times. Stacey Simms 17:26 And you do I mean we've had that situation happen. We've had highs we've had lows, we've had to sit down in line for Peter Pan when my son was four and treat a low and we always had our stuff with us. And I love with Disney. You don't have to stash things in lockers like you do if you go to Universal. Robyn Adams17:43 Universal you do Stacey Simms 17:44 right you do to put things in lockers, although I have to tell you I am always the fashionable one with the small fanny pack. I look so cool. But a fanny pack is they'll let you on the rides. Even universal so I love the fanny pack is in my opinion is the way to go. I don't care how silly you look. I rocket my kids are mortified. I am embarrassment level expert. But it's much easier. I don't have cargo pants. I don't have all those pockets. But I like the fanny pack. Alright, so you can bring your low supplies in. You can have a stroller for little kids, you can rent one or you can get one for free at Disney. What about i would i always warn people about the amount of walking because man even though we've been several times, I always forget how big it is. Robyn Adams18:24 Yes, you walk seven to 10 miles a day. Wow. Yep. And that's one reason why I push a stroller especially for anybody ages 10 and under. They they just don't realize the magnitude of what walking will do to the blood sugar. And even though I send children that are top athletes, you know as far as they are involved in a lot of competitive gymnastics, or baseball teams, football teams, all of that. She amusement parks are totally different...
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Going to "Regular" Sleepaway Camp with Type 1 Diabetes
04/13/2021
Going to "Regular" Sleepaway Camp with Type 1 Diabetes
Let's talk about summer camp! Specifically non-diabetes sleepaway camp. We have a great roundtable to tackle a subject that can seem pretty scary but Stacey thinks is one of the best things she's ever done for her son. Joining Stacey are Shelby Hughes who live with type 1 and has sent her daughter with T1D to diabetes camp and regular camp, and April Blackwell, an adult with type 1. April went to Space Camp as a kid - no surprise if you remember our previous episode with her. April works in Mission Control at NASA. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (beta) Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom help make knowledge your superpower with the Dexcom G6 CGM system. Announcer 0:23 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:29 This week, let's talk about summer camp specifically non diabetes. sleepaway camp, we have a great round table to tackle a subject that can seem pretty scary, but it's honestly one of the best things I've ever done for my son. And my guests who went themselves agree. April Blackwell 0:46 It sort of put that independence on me to you know, take care and manage my diabetes on my own. And I think that was a big step for me personally, just because I wanted to be like everyone else and have sleep overs and go to camp and stuff. So it was a big motivator for me. Stacey Simms 1:02 That is April Blackwell, an adult who lives with type one talking about her summer camp experience. You'll also hear from Shelby Hughes. She lives with type one and sent her daughter with T1D to diabetes camp and regular camp. Plus, you'll hear from me, I've sent Benny to month long, regular sleepaway camp for many years. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I am always excited to have you here. But I this is one of my favorite topics. I love talking about camp. I think camp is so important for kids and for parents. If you're a longtime listener, you know that if you're new, Hi, I'm your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. So what's the big deal about camp, I really feel that going away from your parents, even if it's just for a couple of nights. And usually it's for at least a week, that's what we're going to focus on here is week long or longer camp programs, gives kids a gift, a gift of independence of confidence, a little bit of responsibility, diabetes or not. You learn who you are, when you're not with your home friends, your school friends and your family. You can try different things you can you know, invent different personalities, you can give yourself a nickname, I went to camp with a kid who had a completely different name at camp. And it's a huge tradition in my family, I went to the same summer camp for a little while as my dad, if that gives you any indication, my kids didn't go there. Because we we moved that was a northeast thing. And my kids are both gone to camp, of course in the southeast where we live. But I'm such a proponent of camp. And the flip side of that is, it's so great for the parents, because you have to know who you are when your kids aren't around. I know that seems weird, especially for diabetes moms and some dads. But we get so caught up in our kids, that when you are able to turn the Dexcom share off for a week or longer. It's liberating in a way that I think is incredibly valuable. Is it scary? Oh yeah, I worry every day, especially when he's not at diabetes camp. So we'll get to it. I do want to bring up a couple of quick points. Before we get started. I'm going to try to get a blog post out about this this week. Sometime. I'm a little behind on things. But I'm hoping to put that out because we cover a lot of issues in this Roundtable. But one thing we didn't really mention is the question of when is my kid ready to go to regular camp. This varies kid to kid various camp to camp. I think that if your child is able to check his or her own blood sugar, you know, with a meter not just looking at a CGM, because cgms can fail. And they do need to know how to check their blood sugar. If your child can administer insulin with his or her pump, if your child can change a pump, inset, and do all these things with supervision, I don't expect you know, eight 9, 10 year olds, 11 12, 13 year olds even depending on the kid to be able to do all these things perfectly. If they can do all that with some supervision, then I think you're at a good starting point. And the other question is of the camp itself. Are they willing to learn? Do you feel comfortable with the staff their medical or not, and their knowledge? You know, if you're sending a 14 year old to scout camp, you might feel comfortable that the scout leader knows how to administer glucagon and could call 911. If you're sending an eight year old, you may want to have a camp with more medical knowledge so they can recognize highs and lows and help with giving shots if needed. You know, that kind of thing. It all depends on many, many different factors. But these are important questions to ask yourself. We're going to go through with a round table I'm going to come back after with a couple of things that I think we missed that I want to make sure to mention. But first Diabetes Connections is brought to you by Gvoke Hypopen and you know that low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out. There are a lot of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen is the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. Before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand. Find out more go to Diabetes connections.com and click on the Gvoke logo. g evoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk. My guests this week love camp just as much as I do. Shelby Hughes lives with type one herself. Her daughter Caroline was diagnosed at age seven. She is now 11. She's the youngest of Shelby's three children. And Caroline went to diabetes camp and a regular camp and you will hear all about that. April Blackwell joins me as well. She lives with type 1 diabetes. She was diagnosed as a kid and she went to space camp and was then a counselor at Space Camp. Now you probably recognize April's name. We've talked to her before. And, gosh, I'm always all starstruck talking to her. She works at NASA. She has her dream job she says of flying the International Space Station for mission control. So she was kind enough, right that she was kind enough to come on and talk to me about camp this week, which was just absolutely amazing. So April, thank you so much for that. But I think her perspective is really valuable. And I hope you enjoy this whole conversation. So I am really pleased to welcome Shelby Hughes and April plaque. Well, we are going to talk about camp. Ladies, thank you so much for being here. Shelby Huges 6:51 Thank you for having us. Stacey Simms 6:53 I think we are all in agreement here that camp is cool camp is, great campus really good for kids. And for parents. So she'll be telling me about your, you know, when you decided to send your child to camp, how old she was, what kind of Camp it was, how long. Shelby Hughes 7:08 So the first year that Caroline went to camp was before she was diagnosed diabetes. And I know it seems early, but the camp where my older two children had gone was you know, not a lengthy stay camp is about five nights, six days, and it was a church camp. But it was within, you know, reasonable driving distance from our house. And they offered a starter camp, the year that Caroline finished first grade. And it was a maybe a four night five day situation. So we sent her to that. And she had such a great experience. And so that just was on our radar like she was I just feel like camp is super important for all kids. So you know, we wanted to get her started as early as possible. Stacey Simms 8:02 When she was then diagnosed with type one, did you hesitate sending her back. Shelby Hughes 8:06 Now, um, I think she she was diagnosed in the middle of her second grade year. And the only hesitation was I was worried that the camp wouldn't accommodate her and would say no, she can't come we can't deal with that. So that was our only issue. And when we got in touch with the camp director, and she said no problem. You know, we'll we'll work it out. We were We were all ready to go. Stacey Simms 8:33 Wow, that's great. All right, and we'll get into the details of what we had to we all have to do for those accommodations. And for us as parents to be able to just be able to sleep through the night ourselves when our kids are at camp. April. Tell me a little bit about your camp experience. How old were you when you went to camp? And did you have type one at the time already? April Blackwell 8:54 Yeah, so I I have always with my nerdy persona, but I did go one summer I did a back to back space camp in California when that was still open. And the next week I went to diabetes, to very like different, you know, scenarios for a person with diabetes. And this was only about a year or so after my diagnosis. So I was still doing injections. I didn't have any basically no technology at all back in the dark ages. So I think in some ways that helps maybe because my parents weren't used to getting, you know, share data all day long. And so it sort of put that independence on me to you know, take care and manage my diabetes on my own. And I think that was a big step for me personally, just because I wanted to be like everyone else and have sleep overs and go to camp and stuff. So it was a big motivator for me to take my diabetes. He's on myself. Stacey Simms 10:01 And I'm sorry, did you say how old you were when you went to that camp? April Blackwell 10:04 I think I was like around 12 or 13. Stacey Simms 10:07 Okay. Did you go back to diabetes camp? Did you go back to regular camp? April Blackwell 10:13 I, I never went back to those two camps. Actually, I did some other like church camps and stuff. But my summers just seem to get really busy. So it was hard to fit in those other camps. Stacey Simms 10:25 Yeah, that's the tough age. When she gets to be about 14. I think there's so much going on. Right? It's hard. And our camp experience, which I've shared before is that my daughter, like you, Shelby, my daughter went to this camp, my older child is three years older than Benny, and had a great time and would come home every summer and say, I can't wait for you to go. And I'd be like, there's no way he's going. And we were very fortunate, in my opinion, because it helped me, I don't know about Benny, but he was going to diabetes camp. And he was able to go when he was seven. So he went for a week to diabetes camp. And then the next summer, he went to diabetes camp for a week, and then his regular camp for two weeks. And I say we were lucky because it got me used to the idea of him being away understanding what needed to be done, even. And we'll get into this later, even adjusting basil rates for activity and things like that. But he went for two weeks when he was eight. We did not have share yet because it wasn't even around. And he just had his deck. No Did you have a Dexcom that first year he did not have a Dexcom that first year it was fingerstick only. And then the next year he had share he had Dexcom no share. And that next year at age nine, he went for a month and he has gone for a month every year since except for COVID. And this year, the camp is going to Israel for a month. That's the age group where they go to Israel. So we are dealing with a totally different in my opinion environment. To him, it's the same thing. But that's a different episode. So that's our summer camp experience. And it has been it has not been perfect Far from it. But it has been I think one of the seminal experiences of his childhood, and is certainly influenced him in a great way and given him a lot of confidence and independence. given me a lot of sleepless nights. Alright, Shelby, let me start with you, when your daughter was was going back to camp she was they were familiar with her, they knew what were some things that you talked to them about, to kind of get things, you know, set her up for success. Was there anything that you did at the time or learned since that made it a little easier for her and for the staff. Shelby Hughes 12:28 So um, one of the things, they did have a full time nurse, which was great. And the nurse was very willing to be trained on all things pump related and CGM related. And she at the time had the Medtronic 670 g, which automatically adjusts her basil rate, as long as she's an auto mode. So I figured that would make things a little easier than people wouldn't have to be fooling with our pump, adjusting rates and whatnot. And also, I got, the director got me in touch with the cafeteria staff with the head of the dining hall. And she was fantastic. She sent me a list of everything that they were going to be serving every meal for the entire time. So that gave me the opportunity to, you know, give them some carb counts. So they were very willing to work with me in terms of, you know, figuring out what she was going to eat and and what the carb counts were. Stacey Simms 13:34 April, I know, it was kind of a different time, as you said, you went you say no technology, but you had shots and you had your meter, which is tech. Did anybody help you? I mean, at 12, you probably were okay. But I would always assume that there might be a little supervision or kind of over the shoulder. Are you doing all right? Do you remember how it was handled? What you did? Right back to April answering that question. But first Diabetes Connections is brought to you by Dario. And over the years, I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. And that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Daario diabetes success plan is all about you. All the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for you on how to succeed, get the diabetes management plan that works with you and for you. Dario is published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash Diabetes Connections. Now back to April answering my question of what her camp did to kind of help keep her on track. April Blackwell 14:49 Yes, so this is actually something I think is really great about space camp. To the point that it inspired me to become a counselor while I was in college, but they're just You know, a very, they have everything planned out and under control as you would maybe expect space camp to have. So we had if you're familiar with Star Trek, we had a sick bay. That was it was just part of the camp experience. And even though Space Camp isn't necessarily geared towards kids with health conditions, it became just a seamless part of the whole camp experience. So, you know, every before every meal, the whole group would just swing by sickbay. And anyone who needed to take meds or like me check my blood sugar, take a shot, we just go into like they Well, everyone else was playing kickball or something, you know, for a few minutes. And it, it was awesome, because it didn't make you feel singled out at all. And it was just part of the whole camp experience. So I think that's a really great feeling as a kid. And it allows you to have that moment with the nurse or doctor to have sort of a one on one conversation about any sort of dosing Delta's that you should incorporate for upcoming activities. Stacey Simms 16:11 She'll be did your kiddo have a similar experience like that? Did they do anything? Shelby Hughes 16:16 That was kind of the same thing. There were other kids that took meds before meals, and they would kind of divert to the nurse's clinic. And she would, I think, I don't think she would take her insulin before meals that I think that the nurse would check her blood sugar, make sure her you know, everything was good with their pump. And then after, after dinner, I think she would, she would head by there and the nurse would would help her figure out how much to put in her pump. Stacey Simms 16:48 It was really reassuring to me, I remember starting to kind of plan this in January of the year he when when he went in, you know, July or August or whenever it was, and calling the medical people and saying how are we going to do this, you know, at eight years old, I need eyes on him to make sure that he's changing his pump site to make sure that his insulin cartridge is full, you know, trust but verify you're very independent, good kid, but still eight years old, you know, you're not gonna let him walk around camp by himself all the time doing everything. So she laughed and said, Oh, that whole cabin goes gets medication. That age, you know, and you forget that there are other kids with issues go into camp. And what we we didn't have to work it out at all. Because that cabin and not everybody, but you know, a bunch of the kids in that cabin would get in a golf cart. This is a very large camp, get on a golf cart, and go up to the infirmary, which I'm going to suggest which should be Star Trek themed as sick. But they would go to the infirmary every night. And so when he was eight, that very first year, what we decided was, he'd go up with them every night, and they would physically look at the pump, and make sure that it was an animist pump. So had a battery, no charge, but they would check the battery, they would check that it had insulin, at least for the night, that his pump site, you know, they kind of kept track was changed every three days or whatever. And it just made me feel better that they had eyes on him. And it made them feel better, as well, something we added in the next couple of years, as I realized that, frankly, they weren't on top of the site changes as much as I thought they would be because they trusted Benny, who's a very wonderful kid, but isn't going to change his instead of three days, unless somebody is reminding him, let's face it. So what we did was at meals at most camps, they have meds in the dining hall, because a lot of kids have to take medications with food, at least at our camp to have a table. So I said, Why don't you just bring the inset every three days and pretend it's like an antibiotic or an ADHD medication, like write it down. And then every three days here, let's watch you change it. And he loved it because he truly had did not have to think about it at...
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"Just go!" - Jeremy Larsen Travels the World with Type 1 Diabetes (Classic Episode)
04/08/2021
"Just go!" - Jeremy Larsen Travels the World with Type 1 Diabetes (Classic Episode)
We can't wait to travel again! Looking back on this episode really makes you want to hit the road. Jeremy Larsen is an American currently living in Japan but he's traveled the world. Jeremy started the 70-130 project (the “perfect” blood sugar range) to show that type 1 diabetes shouldn’t hold anyone back from travel. In 2017 he came back to the states to do a national parks trip and now he . This interview with Jeremy took place in October 2015. 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 This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of did you know? stuff. Announcer 0:13 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:19 Welcome to a classic episode of Diabetes Connections. I'll be so glad to have you along, we aim to educate and inspire about diabetes with a focus on people who use insulin. These classic episodes are a chance to revisit episodes that aired in the first and second year of the podcast, when frankly, we didn't have quite as many listeners. And it's always fun to go back and check in with these folks. I spoke to Jeremy Larsen, back in 2015, he has traveled the world and he is currently living in Japan as he was when I first spoke to him. He started a project that he called 7130, the perfect quote unquote, blood sugar range to show that type 1 diabetes shouldn't hold anybody back from travel. Jeremy was diagnosed with type one when he was nine years old. And he says he got the travel bug from his parents and he's from America. He's an American citizen living abroad. And he says he spent a lot of his childhood seeing the US from the back of the family car. He has been all over the world. And you can see from his many, many videos, where he usually shows his blood sugar talks about his management, he's far from a perfect guy. That's not the point. He says, as you'll hear, it's more just about getting out there and living well. With type one little bit more on Jeremy is doing these days. I'll catch up in just a moment. But first, this episode of Diabetes Connections is brought to you by insight the breakthrough, a new history of science podcast created by Simon Simon is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. The latest episode features the question does snake oil actually contain snakes, it's a look into how this phrase snake oil came to be. And it was kind of surprising. It's a little gross. But it's also very interesting. I got a sneak peek of this show at the beginning of the year. I love it. I've subscribed to it. I listened to every episode. They're all terrific circuitry inside the breakthrough wherever you found this podcast. And if you're listening through the website or on social media, there is a link to inside the breakthrough at Diabetes connections.com. And this podcast, as you know is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. When I reached out to Jeremy Larsen back in 2015, he was because I was just really intrigued by his Twitter feed. He was traveling all over the place. And he was always showing his blood sugar. And he had interesting stories about everything that you would we would expect, right finding insulin language barriers. We talked about that a little bit, you know, talking about what sang type 1 diabetes in different languages. He was just as fascinating to talk to him as I had hoped. And we actually connected again a couple of years later, he did a huge road trip across the USA in 2017. Going to different national parks. I think he talks about that in this interview that he was planning that and when I caught up to him recently, he said hey, I'm actually still in Osaka, Japan still teaching although we're watching the Coronavirus numbers with concerning the canceled big Amtrak travel plans last year he has been biking to and from work every single day. And he has a big YouTube channel. So I will link to that now as well. So you can check out what he's been up to. One more quick thing I need to let you know, my intro to this interview. Initially, the beginning of my talking had a lot of music under it. I did things a little differently back in 2015. So it'll be really weird. If I play that now. It'll sound odd. So I will just set it up to tell you that at this point. Jeremy is talking to me from Japan. I am in North Carolina. And I'm starting out by mentioning the time zones here. I thank him for joining me today. Or maybe it's tonight. Jeremy Larsen 3:57 Tonight, my time early morning, your time. Stacey Simms 4:00 Let's start. When you were diagnosed, you were a kid you were living in the United States. You grew up in the southeast. How old were you when you were diagnosed? Jeremy Larsen 4:10 I was nine. And I was living in Augusta, Georgia. I don't remember a lot about it, except that my parents say I was laying around on the couch a lot and had no energy and all that kind of stuff. drinking a lot of water going to the bathroom a lot. I think it was the lack of energy that really, really concerned them. And as I recall it, and I was only nine I'm not sure how accurate This is. But I recalled that they took me to the hospital on December 24. I know it was December 19 just a few days before Christmas. And I don't remember exactly what happened. But remember somebody probably my dad saying that you might have diabetes. And I had heard that word. I knew it was something but I didn't really know what it was right. So I was in the hospital for several days, you know, and of course it was diabetes. And I remember them saying The doctors were real good, never saying they weren't sure I was going to get out for Christmas morning. But they were trying to do that. And I didn't really care. I just wanted to get better. And finally, they let me get out on December 24. So I actually went home and had some kind of Christmas morning the next morning. So that's kind of all I remember, I remember a few things from the hospital, but it was just basically pretty, probably the pretty standard story from back then. Stacey Simms 5:28 Yeah, when you're nine years old, you kind of just want to get back to your, your friends. And if you play sports, and just doing what you want to do. Jeremy Larsen 5:36 I remember some of my friends at school had given like, Christmas presents to each other, and somebody had given me a box and I had like a giant candy cane in it. And I was kind of looking forward to getting back to that. And my parents had thrown it out about that. Stacey Simms 5:51 Do you remember kind of life changing quite a bit? Or did your parents treat this as Okay, we're just going to go on, as we did before with diabetes? Jeremy Larsen 5:59 No, that's exactly how it was. They just, they were really great. They were obviously very concerned and everything, but um, they kind of presented a just Well, that's how it is kind of face to me. And that's just how it was. I don't really remember a difference. I don't remember what life was like before it. You know, Stacey Simms 6:18 we're going to talk a lot about travel today. Did you have that bug as a kid? Did you travel with your parents a lot? Jeremy Larsen 6:24 Yeah, that's where it started. I don't I wouldn't say I had the bug. But we lived. I grew up in Nashville. Actually, I just moved to Augusta when all this happened. But when I lived in Nashville, Tennessee, and when I got when I lived in Augusta, we would take these long car trips once or twice a year down to Sarasota, Florida. And you know, especially from Nashville, that's whatever it is 12 or 14 hours, we do it one straight shot. So it was me and my sister and my parents, and we would just spend me and my sister in the backseat playing games and looking at license plates and all that kind of fun stuff. And we just got used to sitting for long periods of time and watching the world go by and we drove all around. We drove around the Mississippi once and just long, long car trips. I think that's where it started. Stacey Simms 7:10 It's funny, you mentioned the license plate game and things like that, because I travel a lot with my kids who drive with the car, but they've got their movies in their iPads and they don't. I hope they look out the window sometimes. Jeremy Larsen 7:19 I don't think they do. I still play the license plate game when I'm driving around America. Jeremy Larsen 7:25 But you don't know, Jeremy Larsen 7:26 Wyoming. Stacey Simms 7:28 But you don't live in America anymore. How did you get to Japan? Jeremy Larsen 7:32 Well, I had only I was still living in America. And I'd only left. The United States once now was for a month in Scandinavia. And that was a lot of fun just backpacking around, you know, Stacey Simms 7:42 did you go by yourself? Jeremy Larsen 7:43 Were you with friends? Yeah, by myself. Yeah. And that was just just kind of learning how to travel, how to be outside the US and how to find trains and how to find accommodation and stuff. And it was a lot of fun. But then I was back in the US. And I was working in Augusta, actually in Aiken, South Carolina. And I started I don't know what the thing what made me do this. But I started realizing I can I could not even not only travel overseas, I could live overseas somewhere. And I thought, well, how would I do that? So I started looking at websites and stuff. And I found that you could teach English. And you didn't really need any special qualifications depending on the country. There's a lot of different countries you could do it in. So I decided to go to Chile, because I was pretty good at Spanish in high school in college. And I still remembered most of it. So that I go to Chile, I'll be a teacher. And it turns out you had to have a teaching certificate or some kind of degree or something for GLA Chilean government's rules. So looked around. And then I kind of settled on either Japan or Korea because they had a good reputation for having a lot of jobs. And you didn't need special qualifications. And the salaries were pretty good even for introductions, introductory teachers. And then Korea kind of had a bad reputation. I don't want to smear Korea because I don't actually know they had a bad reputation for some of the schools didn't pay on time or wouldn't pay in Japan had no such reputation. Everybody thought Japan was pretty good. So. So I actually, I applied through a website to one of the big companies here in Japan and they flew I flew up to Toronto to have a an interview. And they hired me and a few months later, I came to Osaka for one year. My plan was one year, maybe two and that ended up being four years. And then I left Japan after four years went traveling a little bit and then I came back to Japan. I've been here another four years. That's where I am now. Stacey Simms 9:40 What do you like about it? I mean, did you enjoy teaching or do you just like being in Japan? Jeremy Larsen 9:44 My mother always told me that I should be a teacher and I always thought she was crazy because I never did anything like that. Like I was in I worked in newspapers I worked in like graphics and stuff like that. And just because that's what you do if you want to move here I started teaching English and it turns out I do I get it's, it's not really why I'm staying here. But it is fun. It's very, it's like, you know, most people have desk jobs where they just sit around and they're on a computer all day. But my job was just talking to people. And it's really a lot of fun for that. So the reason I stayed was kind of, it's just, to me, it's like traveling every day a little bit. Because as I don't read Japanese that well, I don't I'm not actually that good in Japanese, despite my time here. So whenever time every time I like walk down the street here, everything's kind of weird and new to me, still, it's still that way. And that's what I like about like a little sense of, I don't quite know what's going on. So I have to fight to you know, make my own way here. And I'm kind of used to it but still, it's it's an odd place to be. It's the people like me who thrive here are generally people who are probably more loners, or they probably, they just enjoy, they enjoy the challenge of trying to figure things out. Stacey Simms 11:00 It must be just so fascinating, as you say, to feel like you're traveling every day. But we haven't really mentioned type 1 diabetes. Tell me a little bit about how you do it. Especially let's let's back way up. Tell me about your first trip that month of backpacking. It seems like this is second nature to you now, how did you prepare? And what do you do when you travel? Jeremy Larsen 11:22 Um, it's kind of funny when I look back on my life, like because I was diagnosed at nine when I think of, you know, the rest of elementary school and junior high school high school, I don't really remember diabetes, like in high school, I don't remember if I took shots to school and took them or if I just took regular in the morning, I don't know what it was. Because I just had like a regular life. And I always, almost always tried to maintain diabetes, but I didn't really it wasn't like a huge, huge, huge thing. It was just something to deal with. You know, when I was in Scandinavia, all I really remember is that I had my glucose machine. And I was on human log and probably NPH. Yeah, human organ NPH at that time, and it was insulin pen with replaceable cartridges. That's what I was using. And I just, it was only a month. So I knew exactly how much I knew about how much I would need. And I made sure the doctor gave me probably two or three times that amount just to be careful, you know, right. And I kept it in a cooler pack, and just carried it around with me. I remember I carried a an empty Coke, coke bottle like an empty plastic bottle. And I would put my used strips and needles in it. Just carry them around month. And it got like all this bloody water and stuff. I remember crossing over from Sweden and Norway by train and some lady came by to check passports and stuff. And she saw that she just looked at it and didn't seem to care. Put it back in my bag. Sorry. But that's got to be the most suspicious thing she's seen all day. Exactly. As long as you have enough supplies, and all I have is insulin and blood sugar machine and strips. Just make sure I have enough I keep them in a couple different places like two different bags in case something happens to one. So it's not ever been in problem. Really. Stacey Simms 13:09 You know, it's interesting to hear you speak about it. Because you're very low key about this. Obviously, you're taking care of yourself. You're doing what you need to do. But this I like that you don't remember what you did in high school to me that shows Hey, it's just life. We're getting through it. I mean, I don't remember all the stuff I did in high school. I don't have diabetes, it's just the way it seems to go for you. Is that attitude? You think something that is important as you live now in Japan? Jeremy Larsen 13:31 Yeah, I think so. Again, it never really comes up here. Actually, the real I don't exactly know why. But I think one of the reasons and I don't know how cool of a story this is, but it is true. When I was in the hospital, and when I first got diagnosed, I remember you know, it's kind of a heavy atmosphere, like you've got diabetes a little bit. And I remember the doctors saying a couple times, well, you have diabetes, and that's not good. But the kid in the next room, he's got leukemia. Oh, geez. And another word I had heard that I didn't know what it was. And they explained that's much, much, much worse, you know? And I kind of think maybe because I eventually learned what leukemia was. And I kind of think maybe that's what gave me my outlook on diabetes. Like it could be much, much worse. Stacey Simms 14:18 I think it's fascinating. You know, I'd love to talk to more people about their first impressions because I think it's very important. I don't doubt that that did affect you. When we were in the hospital with my son. There was a nurse who came by she wasn't our nurse. My son was not yet two years old when he was diagnosed, and we didn't know we were doing well. But what is this what's gonna happen? And she came in and she has type one, she was pregnant with her second child. And she said, I just wanted to come in and tell you everything's gonna be great. life's gonna be good. They told me I couldn't have kids. Here I am with my second. Don't baby Your son, get out of the hospital have a great life. You know, see you later. And it affected us to the point where we thought Oh, great. Look at that. I think if we had let ourselves kind of wallow in the world. mean nothing's going to be good ever again, it would have changed. But this great nurse came by and said, Dad, come on, it's gonna be okay. It really Jeremy Larsen 15:06 a lot of people do follow it and they don't have anybody like that. And I think that sets them on a bad course this isn't a bad attitude. You know, Stacey Simms 15:13 I think we were extremely lucky. So, Jeremy, now that you have traveled and you have traveled extensively, you started at really interesting project that I want to talk about. And that is how I saw you on on Twitter, this is your your Twitter handle and tell me about 7130. What is this all about? Jeremy Larsen 15:36 7130 rows, really, because those are the numbers that the American Diabetes Association recommends for pre meal blood sugars, Jeremy Larsen 15:47 right, that's the Jeremy Larsen 15:48 best range, the best range for generally speaking, I think 70 is a little bit low for me personally, but that's what they say. So it's got a good ring to it. 7130. What happened is I knew another diabetic type one diabetic, and he didn't take care of his, I guess he took insulin a little bit, but he didn't. Like he got sick one night, like he felt really bad. And he called his father who is a physician. And he said, I feel really bad. And his father said, Well, can you check your blood sugar? And he said, No, I don't have any I don't own a machine. And I heard this story. And I mean, whatever that story is worked out. Alright. But I thought, and he's had a couple surgeries for like, diabetic retinopathy and stuff like that. Wow. I thought why do people do that? Why do people just not accept it like it life is so much better, if you take a few seconds, every, every few hours, whatever it is, check your blood sugar and try to get it right, you know, it's gonna be real high and low sometimes, but just try to try to learn more, you know, the the psychological barrier that some people have not being able to face, it is very unhelpful, and what 7130 is really to me, for one thing, it's way for me to brag about the traveling, I do, and I like that. And I like blogging and stuff, but um, it's a way to show people that you can go anywhere, diabetes doesn't have to hold you back. And if you watch your blood sugar, and really like, you know, accept diabetes, except that you have diabetes, and that's just how it is. And it's not that big a deal. It's not that hard. It doesn't always make sense. But...
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