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Diabetes Connections | 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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Now displaying: Page 20
Jan 21, 2022

Every week “In the News…” brings you the top stories and headlines around the diabetes community. Top stories this week include: how new nanotechnology might help make stem cell transplants a reality (without immuosuppresive drugs), a worldwide A1C survey, the FDA releases more info about issues with Medtronic, lung function and type 2 and some info about diabetes camp.

Join Stacey live on Facebook every Wednesday at 4:30pm EST and in Instagram at 4:45pm EST

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Episode Transcription Below (or coming soon!)

Please visit our Sponsors & Partners - they help make the show possible!

DEXCOM

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. If you’re new we go live on social media first and then All sources linked up at diabetes dash connections dot com when this airs as a podcast.
XX
Looking to get organized? Check out my new guide with top tips to clear your diabetes clutter. Everything from how to start to where to donate and how to keep it from taking over your house. Head over to the home page to get organized.
XX
Lots of news in the last few months about stem cells and type 1.. but transplantation still means rejection without immune-suppressive drugs. Researchers at Northwestern University say they may have a way around those problems. They’re using nano-carriers to generate a new form of immune-suppression that can target specific cells related to the transplant.. without suppressing wider immune responses. This paper was published in the journal Nature Nanotechnology. one of the researchers, Jacqueline Burke, was diagnosed with type 1 at age nine. She’s one of the study authors and hopes it has a major impact on the future of diabetes research.
https://news.northwestern.edu/stories/2022/01/nanotherapy-type-1-diabetes/
XX
Possible new link between lung function and the onset of diabetes. This is a big study out of South Korea.. almost 20-thousand healthy adults followed over almost four years. At the beginning of the study none of them had diabetes. After adjusting for other factors, the team found that the group with the best lung function had a lower risk of developing diabetes. More study is needed, but these researchers think that managing lung health – which isn’t really ever looked at as a risk factor - could help prevent diabetes.
http://www.koreabiomed.com/news/articleView.html?idxno=12981
XX
Big study of people with type 1 from 22 different countries showing that most don’t have an A1C under 7.5%. As you’d imagine, that varies widely by country and by age. This was info from more than 500-thousand people gathered over 4 years. Highest A1Cs were generally in people aged 15-24
There’s a lot of data here and I’ll link it up. But the researchers don’t seem to try to delve into what’s going on or why this is the case.
https://www.healio.com/news/endocrinology/20220119/hba1c-remains-suboptimal-for-most-people-with-type-1-diabetes
XX
It’s not a surprise that hotter weather could mean more health issues for some.. but a new study from Brazil is closely watching heat and diabetes. Every 5-degree Celsius increase in daily temperature correlated with a 6-percent increase in hospitalizations due to diabetes.. this was between 2000 and 2015. The oldest patients were at an increased risk for diabetes-related hospitalization when exposed to heat. The study authors say it’s the first nationwide study to look at this issue.
https://www.healio.com/news/nephrology/20220118/increase-in-heat-exposure-correlates-with-increase-in-hospitalization-due-to-diabetes
XX
Medtronic still in a bit of hot water with the US FDA.. Medtronic took more than three years to replace and start recalling insulin pumps with defective retainer rings after first becoming aware of the problem.. this according to an FDA warning letter sent to the company in December and recently made public. The company also failed to investigate more than 800 complaints about defective updated retainer rings and failed to promptly notify the FDA within 30 days after discovering that issues with the device could lead to serious injury or death. Medtronic says, quote “We take these issues very seriously and hold ourselves to the highest standards of quality and patient safety,"
https://www.startribune.com/fda-medtronic-slow-to-update-recall-defective-insulin-pumps-for-diabetes-patients/600136525/
XX
Medical write up of what might be the oldest person to be newly diagnosed with type 1. This was a 93-year-old woman. Her A1C was 12.9 but I didn’t see in the write up why they had a high clinical suspicion of type 1. They checked her diabetes auto antibodies and confirmed the diagnosis. On recovery, she was discharged home on once daily insulin with aim to self-manage with support. I was only able to find a summary of this.. maybe we’ll learn more soon.. but just another reminder than type 1 can be diagnosed at any age.
https://pubmed.ncbi.nlm.nih.gov/35027384/
XX
It’s that time of year.. diabetes camp registration is opening up! Our local sleepaway camp announced they’ll start signups in February and your camp may have already done so. Please check soon – a lot of these camps have strict limits and are met pretty quickly. I’m a huge fan of diabetes camp – Benny isn’t going this year because he’s been accepted by his regular camp as a CIT and he’ll be gone for … 8 weeks.
XX
Before I let you go, our long format episode this week is with Joanne Milo.. diagnosed almost 60 years ago, she was told like a lot of people with type 1 that she wouldn’t live to see 40. What happens now that that group is reaching 70, 80 or 90?! Joanne is also a leader in Loop and Learn and we talk about embracing that DIY tech. Next week we’re talking to Tandem about their newly announced 5 year plan leading to a tubeless patch pump.
Listen wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

 

Jan 18, 2022

Diagnosed almost 60 years ago, Joanne Milo loves technology and helped start the popular Loop and Learn group. She’s also passionate about diabetes and aging.

It's hard to believe now, but many people diagnosed in the 1960s and 70s were told they wouldn’t live to age 40. Thankfully, that wasn’t true. But the medical world wasn’t prepared for them to actually live long and healthy lives. There is very little research or support for people with type 1 over the age of 50. Imagine when you get to 80 or beyond!

Joanne Milo is also the author of the book and blog “The Savvy Diabetic” and she has a lot to say about how we can all prepare better for emergencies or hospital stays.

Joanne's website - The Savvy Diabetic

More about Loop and Learn

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Episode Transcription Below (or coming soon!)

Jan 14, 2022
Every week "In the News..." brings you the top stories and headlines around the diabetes community. Top stories this week include: a Dexcom G7 data update, Abbott announces new Lingo sensors to measure ketones and more, it's 100 years since the first insulin shot, Lilly Diabetes discontinues T1D Everyday Magic and an ultra releases diabetes data to a medical journal
--
Join us LIVE every Wednesday at 4:30pm EST

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Episode 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. All sources linked up where you’re watching and at Diabetes-Connections dot com when this airs as a podcast.

XX

Looking to get organized? Check out my new guide with top tips to clear your diabetes clutter. Everything from how to start to where to donate and how to keep it from taking over your house. Head over to diabetes-connections dot com to organize your diabetes supplies!

XX

Some new information about Dexcom’s upcoming G7, which has been submitted to the US FDA and in Europe. Latest clinical study show the MARD of the G7 is 8.2 for adults, compared to 9 for the G6. MARD is the Mean absolute relative difference and the lower the better here. G7 was even lower, 8.1 for kids. This is close to the same results they talked about last summer, but the group in the trial was bigger. G7 is expected to get approval in Europe this quarter and likely in the US much later this year. Our last longer format interview episode is with Dexcom’s CEO and we go in depth on this.

https://www.drugdeliverybusiness.com/dexcom-ceo-touts-unprecedented-performance-of-g7-in-clinical-trial-awaits-fda-decision/?fbclid=IwAR3G5_Fu9fhPfR0M3FzgCNCsFYmo4gDRDy5nJySgxt56mMVJgrpUsVQedis

https://investors.dexcom.com/static-files/0c3012e2-40f4-4046-a962-85e6b421d490

XX

Two COVID and diabetes studies I want to talk about.. the first showing that more children are being diagnosed with type 1 and type 2 diabetes after getting COVID. This study looked at databases of people under 18 starting in March 2020 and going for 18 months. There are a LOT of questions here.. including whether post-COVID type 2 diabetes will actual be a temporary or chronic condition.

Which leads us to the other study.. this one of adults, in almost 4-thousand covid patients, just under half developed high blood sugar levels, including many who were not previously diabetic. These researchers say a lot of the patients here were in their 30s and 40s, no sign of diabetes before COVID.. and the levels of glucose in their blood were incredibly high, sometimes more than twice the level that indicates diabetes.

These patients still had high levels of C-peptide, which shows that they were still producing insulin. The theory here is that something is disrupting the fat cells. But the researchers admit they are just at the beginning of figuring this out.

It’s this latter study and others like it that seem to be showing that there really is something different about COVID and blood glucose. I saw a lot of people dismissing the children’s study with, well, any virus can cause T1D.  I’m glad these researchers are digging into what’s going on.

https://www.sciencenews.org/article/coronavirus-covid-diabetes-fat-cells-blood-sugar

https://www.nytimes.com/2022/01/07/health/kids-covid-diabetes-cdc.html

XX

Abbott unveils plans for a new line of consumer bio-wearable sensors that will collect a broader range of biological readings to help users optimize their exercise and nutrition regimens and overall health. Called “Lingo”- which are still under development and aren’t intended for medical use— they are based on the existing Freestyle Libre diabetes monitoring technology. We’re talking about glucose, ketones, lactate and alcohol. Interesting to me that these were shown at the Consumer Electronics Show and not a medical conference, but Abbott is up front that these are basically for athletes and not for people with diabetes or those who need to make medical decisions based on the sensors. We’ll see which of these makes it off the drawing board.

https://www.fiercebiotech.com/medtech/abbott-ceo-ford-unveils-lingo-line-sports-biosensors-based-diabetes-monitoring-tech

XX

Another divestment for Lilly Diabetes – last week we told you they were doing away with their Journey Medals for diaversaries.. they have since announced that T1D everyday magic is no more. This was a partnership between Lilly and Disney that was a blog and a place for recipes and the home of those Coco books, the cute monkey with diabetes who hangs out with Mickey & Minnie Mouse. As of today you can still get digital versions of the books via the website but we’ll see how long that lasts. Full disclosure: I wrote for them a couple of times – and was paid by them – glad I saved those columns.

https://www.t1everydaymagic.com/thank-you-for-sharing-the-magic/

XX

Interesting news from an amazing athlete with type 1. We told you that Sebastien Sasseville biked across Canada this summer. He previously went up Mt Everest and did a brutal race across the Sahara. Now, all the data on his blood sugar during that recent ride has been published. It’s in the Journal of Diabetes, Obesity & Metabolism. Sasseville wore the Tandem and Dexcom Control IQ system during the ride.. the article is about how using that kind of automated insulin delivery system can help ultra athletes with diabetes.

 

https://dom-pubs.onlinelibrary.wiley.com/doi/10.1111/dom.14629?fbclid=IwAR2JLTn9dGJu43have5EMqXkWlENuDgPFDQq6RrsbY7TJyRJV0aERsDxYbo

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This week marks 100 years since the first person received a shot of insulin. Canadian teenager Leonard Thompson got that life saving injection on January 11, 1922. Of course, this was via Dr. Frederick Banting and his team.. Thompson was drifting in and out of a diabetic coma and weighed only 65 pounds. He was 14 years old. The first shot was found to be impure and didn’t work. But they were able to fix the problem and administer a second purer shot. Thompson only lived to age 27 but his actions helped save so many lives.

https://www.healthline.com/diabetesmine/diabetes-care-joslin-100-years-first-human-insulin-shot#A-century-of-Joslin

XX

Before I let you go, as I mentioned earlier, the podcast this week is an update from Dexcom. CEO Kevin Sayer answers your questions about the G7 and lots more. Listen wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.

That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

Jan 11, 2022

This week, Dexcom CEO Kevin Sayer spoke to the JP Morgan Healthcare Conference about the G7 and beyond. We talk about information from that presentation and get to as many of your questions as time allows.

This interview took place on Tuesday Jan 11 and much of what we discussed isn't FDA approved.

Dexcom presentation info here

Club1921 info here 

Our usual disclaimer: Dexcom is a sponsor of this podcast, but they don’t dictate content and they don’t tell me what to ask their executives.

Recent Dexcom episodes:

CTO Jake Leach talks about Garmin, Dexcom One & more

CEO Kevin Sayer talks about G7, Direct to Watch, Adhesive and more

CEO Kevin Sayer talks about Dexcom in Hospital, G7, VA program and more

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Episode Transcription Below 

Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921. Where Diabetes Connections are made
This is Diabetes Connections with Stacey Simms.
Welcome to another week of the show. You know 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. And I'm talking with Dexcom CEO this week, it's Kevin Sayer, he is back to check in with us again. And in the interest of getting this episode out to you as soon as I could. It might sound a little different right here at the beginning. But Dexcom episodes are always so high interest that it really merits a quick turnaround. I didn't want to sit on this interview for a week. So here's the setup. Dexcom CEO Kevin Sayer gave a presentation to the JP Morgan healthcare conference, if you're listening as this episode goes live, that was just Monday of this week, January 10, the interview you're about to hear took place on Tuesday, January 11.
My usual disclaimer Dexcom is a sponsor of this podcast, but they don't dictate content and they don't tell me what to ask their executives. I asked the Diabetes Connections podcast Facebook group for questions. And Whoa, boy, did you have a lot as always not a surprise. And I really appreciate you sending those in, I got to as many as I could, while also trying to include what the folks at Dexcom had really asked me to bring up there are some topics that they wanted Kevin to make sure to address. And I think we do a pretty good job of trying to reach a balance here.
Kevin, welcome and Happy New Year,

Kevin Sayer 1:46
and Happy New Year to you.

Stacey Simms 1:48
Thank you. Well, this seems to have started out in pretty happy way on the headline, just from this week. Dexcom CEO touts unprecedented performance of G7 in clinical trial. This is after your talk at the annual JP Morgan healthcare conference. Tell me a little bit about that unprecedented performance data.

Kevin Sayer 2:08
I'm happy to. And I just have to qualify it by saying no, I can't send it to all your listeners at the end of the call yet. We're still waiting for approval in Europe. And we have filed this with the FDA, I'm going to take you back a little bit, we made a decision when we were going through the G7 development process that we wanted to answer that performed better than G6. And all of our scientists looked at us and they go oh, really, you're sure because this is really good. And so we spent a lot of time new algorithms and new manufacturing techniques, there's a lot of things in G7 that make it different. We also wanted to validate that performance with a study that was so large, nobody could refute it. So as you look at the data that I presented at the conference yesterday, over 300 patients 39,000 Match pairs all across since one ranges and on the I CGM standard side, but with the 5% 95% lower bound, and even the absolute points, you can see we are well within all of the iCGM standards, which are very technical and actually are a very good measure of how a sensor actually performs in reality. And they were very thoughtful in developing these standards to try and pick the centers that don't work to put you statistically in a bind to whereby if you really aren't performing in the low range or wherever, you're not going to get that iCGM designation. We're very comfortably there.
And the overall MARD in the study, Stacey is eight point, you know I it's in the low eight for adults and pediatrics. And if you start looking at the data, we gather the data sets in three periods, you know, days one and two, the middle days, four, or five and six, and the last days nine and 10. It's pretty low, I think it's below 10. In the first group a day, the first days, which are always a little bit higher, traditionally in our centers than the other days. But in those middle and end days, it's it's near seven, and strips for six. I mean, we have done something that I've been in this business for since 1994. I didn't think we'd ever do this when I started. As far as being this good. This is really, really good data. And we're going to continue to deliver the experience to our customers that they demand from us. So as you can as you think about an iCGM that's driving an automated insulin delivery system. And not only is the performance great, the user where it's 60% smaller, it's a 30 minute warm up. It's a new app. From our perspective, we've got a lot of the clarity data, your listeners will know about clarity. We've got a lot of your clarity data right on the app. There's new alarm configurations.

Stacey Simms 4:48
I'm gonna just jump in with a couple of quick clarifications before we go on. You mentioned a number of there that went by quickly I apologize when you talked about the 300 people in this trial 39,000 match what I missed that one

Kevin Sayer 5:00
matched pairs. That's where you compare the CGM value to the blood glucose value from the laboratory instrument. So the way our studies work is literally we draw blood samples from the individuals in the study at intervals, and then we actually match the CGM data to that laboratory blood instrument. So 39,000 points from these 300 people in this study were matched. Got it?

Stacey Simms 5:27
And you mentioned the MARD mean absolute relative difference. Most of you, as you listen are very familiar with this, the lower the better for CGM G6, I, my understanding was G6 was in the low nines. This is 8.1 for peds. 8.2 for adults, as I'm reading it, that's right. I know you can't tell me I'll ask you anyway, why? What made the difference here? Is it sighs is it algorithm? Do you have anything you can point to? Or is that a trade secret

Kevin Sayer 5:49
it's combination, I think the algorithm has been the most, the algorithm changes were really extensive here. And, you know, we always have manufacturing processes to get better, the way we build the G7 centers different in every step of the way. Literally, our G6 manufacturing processes go away and the G7 ones take over the summer, we're a little similar on the actual sensor wire itself, and that manufacturing, but everything else is different. We just think it it's smaller, it's a lot shorter than G6 was. And so it is it's going to be a completely different experience for everybody.

Stacey Simms 6:28
So to go back to what you were talking about, before I jumped in there, you were starting to talk about alarms, is there something different for the alarm,

Kevin Sayer 6:35
the app is different. And so access to them, and, and just how you use them, if we try to get to be more consumer, thoughtful, as we configured the alarms, we'll see how everybody loves him. It'll be interesting. The alarms are one of the things we get the most comments on when we launch a product initially, we try and please everyone, but we never please everyone. And then you get you know, the agency at one time. I don't know if your call. I think one of our other discussions, we had to make the mute override not work on the low end. Boy, we got a lot of people mad at us about that one. So we've tried to comply with what our users want, and also comply with what the FDA has asked us to do. But I think users will find the alarm experience. Good as well. I like I think it's just gonna be a home run. Yeah, well, I

Stacey Simms 7:24
mean, my son would be happy if an alarm never made a noise again. And I know other people who put like it to alarm every time there's any movement. So I hear where you're coming from, can you give any insight into the G7 app in terms of what the differences that we may see as users? And I guess especially one of the questions I always get is about follow any changes of significance coming that you can share follows

Kevin Sayer 7:47
on a separate software track. And so the G7 system, the app is just we tried to get more data in the app itself, versus what we have with G6. So a lot of the clarity data, or at least summary query data is sitting there right in your app. And that will be i we think people will like that just to see how they're doing over time you got your time in range data for, you know, three 714, you know, a month, 90 days, see how you're doing time in range wise and the app is other than that it's relatively similar. The startup is different and you know, in the interface is going to be different. I think over time, what you'll see with us is that app is now going to get more sophisticated, we changed the entire software platform for G7 and started over again, and we developed a software platform, we can now really change and add on to a lot easier than we could in the past. And so we're hoping to have more frequent software releases.
But we've also learned that CGM is not like Battlestar Galactica game, a game where you want to get a new release every two weeks to fire everybody up. We can't do a release every two weeks, because people depend on this for their, you know, for their lives. And if you do too frequent releases, and you botch a release, you do some wrong, you remember what happened, if we ever make a mistake on the software, the data side, we can't do that. But we do want to add more features more quickly in this platform will enable us to do that. I think one of the things you'll see going forward on the software side, we really want to automate a lot of the tech support features.
We've added some, you know, you can get FAQs right from the app now with respect to your sensor, but there are other things we think we can do tech support wise in the app that will you know, reduce everybody's burden. Nobody likes making a phone call and nobody likes picking up the phone. And when we have a sensor fail, and we do have sensors fail, it just doesn't make any sense that you have to call us if we've got data on a phone, it'd be much easier. For example, if we could diagnose that failure right on the app and go through a very quick process to why but where you could get one. I can't give a timeframe when all those things are going to come but the platform is robust enough that over time, we can add features like that. One of the other nice things about G7, since it's fully disposable, you know, every sensor has its own unique serial number. Whereas with G6, that same transmitters used with three months’ worth of sensors. So it will be, it will be fun to be able to follow things like that and see how the sensors go through the channel where everybody gets attract things of that nature. So what we're really looking forward to the change in our business that G7 affords us.

Stacey Simms 10:28
As usual, I have listener questions, I'm going to try to not repeat because you've been really accessible in the last year, we've talked to a couple of folks from Dexcom, besides yourself. So as you listen, if I didn't get to your question, or if you have a question, good chance, we actually answered it in the last year, year and a half. But given let me ask you about compression lows, because that's one of the things we had talked about, about testing the G7. Any update on that in these trials, if you lay on it, you know, circulation slows, and you can get a false reading any better with the G7

Kevin Sayer 10:54
part of the clinical study is in the compression, because you're pretty much sitting in a chair with a needle in your arm drawing blood. So I'm sorry, we can't really test that we'll learn more about compression when it gets in the field. My hope is that it isn't as much but I can't promise that because I don't know, we're not enough people. I think there are ways over time where we can manage compression better, I'm not going to get into all the science on the phone, believe it or not, I do spend a lot of time with the engineers on this specific issue. Because I have it happened to me from time to time too. So I will call them up say Hey, can we do X, Y or Z? And I think there are some some answers, but I can't give them away because I don't want to give away the playbook. So let's let's just see what we can do overtime on that one.

Stacey Simms 11:42
Okay. All right. But you know, the next clinical trial just have them lean against the side of their bed.

Kevin Sayer 11:46
We will we'll have to do well. Diffic very scientific.

Stacey Simms 11:50
Another question came up, and I think I'm gonna knock wood. I think we've been very lucky on this. It's about new iOS launches from Apple. And I'll read the question and it'll tell you, briefly our experience. This person said Dexcom is part of the Apple Developer Network developers have access to new release such as iOS months before launch, why does Dexcom lag behind Apple iOS launches by months in terms of quote, approved use. And our experience, frankly, is that we have not had any issues Benny and I both have, we just got but as a 13. Plus, we both had very old phones. And we have a latest software and no glitches for us. But that's not everyone's experience, can you talk a little bit about that,

Kevin Sayer 12:30
we do get the iOS versions in advance, and we do our best to comply with them, I would I would tell you that it isn't as simple as it's made out to be. And the iOS version that's launched isn't always exactly what we've worked on as they as they make tweaks, not big ones. But you also test for everything that you know about the new iOS versions, and sometimes are things that you don't know, that are in there that come back and may affect the app later on, which is why we delay a little bit, we try and go through every bit of testing that you can imagine. And I'll be honest with your users, Apple's made iOS changes, because of us, we have called up and said, Look, you got to do XY and Z here we have a problem. And they're very good to work with, they've not been difficult at all, you know, when you think about iOS and Android operating system and all the things that they impact. And it's very hard not to impact somebody adversely when you do a new iOS launch.
And you know, the perfect example with us is the home you'd override journey that I brought up earlier. In the beginning, I believe the only app that can overcome the mute override within iOS is authorized manna in the beginning was Apple's alarm clock, but other people would go around it with their apps was a medical device, we can't do a go around, we have to make sure what we do is in compliance and known so they work with us very well to make sure we could do what the FDA wanted with respect to the mute button. And the same thing with Android on that, and that was a very difficult exercise. So if there's a delay, it's because we're taking time to see what might have been put into iOS that would change our app. And it just one more thing that will stop. new operating systems are often designed to minimize power usage to extend battery life. Oftentimes, minimizing power usage affects an app that has to be running continuously. And those are the types of battles that we fight are things that we have to make sure we test as a new iOS minimizes power usage. Just does that turn us off? Does it does that stop Dexcom? And we've had, we've discovered things of that nature where it could affect our app. So there you go. Long answers. All right.

Stacey Simms 14:44
No, no, that's great. And you mentioned you've asked iOS you've asked Apple to make changes. I assume the alarm was one any others that you can share.

Kevin Sayer 14:52
I know that nothing I could share. Nothing major that I like you said they're very cognizant of the Dexcom community there we are. You know, we're we're a very large part of the iOS, you know, we're pretty, it's pretty vocal group when it comes to iOS,

Stacey Simms 15:06
pretty vocal group period, the whole community. Alright, we say that with love. So another question came from my group, which was about Sugarmate. This is a, I would describe it as a third party app that uses the Dexcom information. And now the real time API to display and and act on data in its own way, my understanding is that Tandem owns Sugarmate, just from way of background here. And you know, Dexcom owns a little bit of Tandem. So there's a relationship there. Can you speak a little bit about data sources, but the bottom line question here was using Sugarmate and the situation to ask you, does Dexcom feel like they own the patient data? Or do the patients still own their data, even when going through the Dexcom web API's, we believe

Kevin Sayer 15:49
the patient's own their data, not us, let me rephrase that we believe the patient's control the use of their data, we are the stewards of that data sitting on our servers. And so we have a responsibility to maintain it and to keep it but where that data goes and where that data is used. We do believe, particularly if it's identified data, that the patient absolutely has complete control over that there's vector sugar made, it's interesting, it was not using API's before it was a like many and non authorized use of the data to display it in a different format that people quite candidly, mess, like better than looking at the Dexcom app. And that's fine. That's why we built the live API's, we made a server change to upgrade our server platform, again, more capacity, more safety, more redundancy. It's a project that's been going on for years. And we've come to the end of that project this year. And when doing so there were some technical issues with Sugarmate, they very quickly switched over to the live API's. And now this is an authorized use of the data based on platform and data pipes that we built. So we're willing to share the data with people when they want it. I think that's an attitude of Dexcom. That changed very much over the years, when we first started, we had a hard time with that concept. Because we worked so hard to invent this technology and gather this data, why would we share it with anybody and say, See, you remember the early days and Nightscout, they were mad at us, we were mad at that. Now, we're not mad at anybody anymore. I think it's important that the data sharing be structured and be used for good purposes. But you know, all in all, it's a, it's a good use of the data that we have, because these are still Dexcom customers. If you want to, you're still buying sensors and using them. It's not a bad thing.

Stacey Simms 17:35
Let me ask you a question about the sensors. And this came up in the fall. I've seen it less since but it's still out there. And I don't know if this is something you can answer. But it seems that we have not received this. But it seems that some customers are getting the G6 sensors, the inserters brand new in the original packaging, but a new label on it that says this product meets shelf-life extension requirements. I'm your people I reached out to them in the fall, they told me the stickers, oh, you know, it's all legit. There are updated expiration dates. But I'm curious why this is happening. And you know, what is the shelf life of the G6,

Kevin Sayer 18:10
I can tell you exactly what's going on, you do shelf-life testing for product as selling your product will last. And over the course of our product lifecycle, you trying to extend that shelf life through more testing to make sure the product still works for the same amount of time period, if you manufactured product with 12 months shelf life, and then extend that shelf life to 18 months. And it's still the same product and still same manufacturing process rather than unbox it, put it in a new box or throw it away, we put a sticker on the outside because it's same products been tested, it's been proven that it works for 18 months, that's not a problem. That doesn't mean that it's 18 months old, we never have inventory that sits around that long to my knowledge, but we do extend shelf lives, it's important for us to do that, with respect to the distribution channel, particularly as we go to the pharmacy, you know, in the drugstore and and our distributors, the longer they have, you know that they can keep product, the better. We don't want people throwing product away if they don't have to. So all that means is we've extended our testing and shown that the product still works for a longer period of time and wanted to to label the product accordingly. That's all

Stacey Simms 19:17
Yeah, I think because it came at a time when there is nervousness just in general not just in diabetes about supply chain and, you know, scarcity concerns. It just seemed unexpected, if that makes sense.

Kevin Sayer 19:30
Well I one of the reasons to extend life is in fact supply chain we don't have inventory issues with G6 you know G6 is a very very well running process right now and still, you know, the premier sensor on the market. In fact, we launched a G6 derivation product in Europe, these past three months called Dexcom. One a it's a cash pay product sold on the E commerce platform in four European countries say See now and it's a lower price and geographies. But we did a feature that we took away, share and follow. We're not connecting any devices. It's it's a simpler technology. And again, we have d six supply to be able to go and do things like that. And we are planning to have G7 capacity to do similar things. We are not shooting small on either front will have capacity on both sides. And, you know, listeners on a supply chain perspective, we have been extremely diligent with respect to components for our products. And right now we see things very good today. We my operations team has just been outstanding on this front. So knock on wood, no, no Dexcom problems today.

Stacey Simms 20:40
All right, two more questions for you. As always, we're going to run out of time. And as you're listening, I would refer you again, we did have a conversation about Dexcom. One in a previous show. So I will link that up. This one is more of I've asked this, you answered it, but I still continue to get questions to please ask you please make sure when GS seven comes out that Medicare is taken care of?

Kevin Sayer 21:00
Well, that is a great question. And I think we've learned from our mistakes in the past. So we will when we get G7 done, what we will do is we will file with CMS to get G7 reimbursement. That's a process that I've heard anecdotally takes three to six months. So if we can get it done in three months, we can't file with CMS until it's approved. But we'll file after approval, and then we'll go and it is our plans to have capacity for all of our US users. When we go it is not that Medicare delay for G6 was one of the most emotionally gut-wrenching things I've dealt with here, because you can't imagine how many emails I got. But we didn't have capacity, and we didn't have everything ready. We've learned from our mistakes. And we'll hopefully be ready to go to everybody. That's our plan right now.

Stacey Simms 21:49
That's great. Okay, and my last question is, and I hate doing this to you, but I'm doing it anyways, look into the chapter, we're gonna look, we're gonna come at it sideways, because I did have one listeners and ask him what's planned for the g8? And I said, Come on, let's let him get the G7. Oh, you know what? I'm happy? You can answer that. Let's go for it?

Kevin Sayer 22:07
Well, well, I'll give you two because we did lose some time in the beginning because my computer wasn't functioning properly. As we look to the future, we want performance to continue to be better. And then we ask ourselves, but we're getting to the point where as you get to an eight, Mar D, we're getting close to finger six, I don't know how much more of a gap there's going to be, as we look to the future, and even G7 derivatives, we want to go to a longer life, we want to go to 15 days rather than 10. We'll be running studies doing that over the next couple of years. We've got a couple of plans there. We're always looking to upgrade the electronics, and how much better electronics, you know, I know one of your bigger user complaints is connectivity and loss of data, how do we improve that experience for our customers to make that better over time? Because we can always be better. And phones change faster than medical devices? So what why do we put there, we're looking at ways how we can help the environment for future product launches again, and changes in the next platforms, G6 has a lot more materials than G7 does as far as just raw plastic. So how do we make an impact there? On the cost side, there's some form factor things that are pretty far out there that we look at that I won't go into that are really, really fun. We'll see if we had done that. And if they're feasible from a cost of manufacturing perspective, but again, we're now very much focused on customer preference, rather than can't we make this work well enough, you know, in my early days here, it's Can we can we just get this thing working well enough to whereby people can rely on it. Whereas now it's one of those features that are going to make it a more engaging experience. And the last one will be software and analytics and things like that, as I look out over time, do we end up with analytics to whereby we can offer our users a menu of choices on the software side to whereby they can get more if you want Dexcom when don't want to connect or talk to anybody? You can have that if you want something that literally literally analyzes every glucose measurement that you take and does something scientifically. How do you get there, I think there's a number of experiences we can develop over time for future product generations without changing the form factor. So I don't see any slowdown in investment on the r&d side. And on the product side, G6 is the best product out there now and G7 will just be better in every way. And then we just keep going from there.

Stacey Simms 24:27
And I appreciate you answering that. Thank you. So if you keep going from there, this is the sideways kind of question I wanted to ask. Okay, go ahead. Okay. A couple of days ago, Abbott announced the idea of what they're calling Lingo, which is bio wearables that will track not only glucose, but ketones and lactate and alcohol. And they say these are not medical devices. You know, this is for people who want to be you know, ultra-marathoners and things like that. We're already seeing sensors used in that way right now. Any plans to do something like this?

Kevin Sayer 24:56
You know what our electronics platform for G7 We could put any, if we could develop a sensor wire with membranes and analytes and such for to measure something else, it would fit right into G7. And we design G7. With that in mind, we have advanced technology work going on with the other analytes. But it's still an advanced technology phase, we have to answer a couple of questions. First, have we done all we're supposed to do on the glucose side? Before we run there, and we got a lot to do right now, Stacy, you've heard me talk on this call. And so we need to get done what we started, we need to get G7 launched, we need to scale it up and manufacture it in the 10s. And ultimately, hundreds of millions of products as we stand up a factory in Malaysia and get our Arizona facility built out even more. So we've got to get that work done. The second piece, I'm going to answer this in three pieces. The second piece is what is the commercial opportunity for each of those things. They did announce this line of sensors, but they're all individual sensors.
So I've worn a lactate sensor, I'll be completely honest with you from the lab and seeing what it does to my workouts and it's very cool, I can see which workout is better than another one. But I'm not ultra-marathoner, I probably wouldn't change my life. But it was very interesting to look at. There are other scientific uses of black data, particularly in a hospital setting. But what is the market for those, and so we're gonna kind of take an approach, we'll continue to develop the science and if Abbott wants to go develop a market, I am happy to follow this time rather than create it, like we've done with glucose. The third piece of this is there are a lot of biosensors out there. Now, you have your Apple Watch, and Apple is continuing to gather more and more data or ranks, whoop bands, Fitbits, they're advertised on television all the time, I would love to incorporate data from these other sensing technologies into into Dexcom. And vice versa, share our data with those people, particularly as you head down the health and wellness path. And let's get some other people's sensors into our platform. In all honesty, if Abbott's really good at sensing these other things, we'll take that data on our platform and analyze it to if they want to, I guarantee you, that probably isn't gonna, gonna happen. But we would, you know, let's be open about this. We're going to get our glucose work done to because we've not seen an opportunity that exceeds this.

Stacey Simms 27:13
Got it? Excellent. Well, thank you so much for answering that it really is so interesting to watch and to see if, as you say, if any of this really, really makes a difference commercially, if people do want to adopt it widely. You know, I think the jury's still out, so we shall follow.

Kevin Sayer 27:26
Hey, thanks for having me again.

Stacey Simms 27:27
Thank you so much. Have a great day.
You're listening to Diabetes Connections with Stacey Simms.
More information at the episode homepage, diabetes, Dash connections.com. I'll have the transcription up as soon as I can. But again, quick turnaround on this episode. Thank you so much, again, for sending in the questions. Obviously, I didn't get to all of them. And if you're not in the Facebook group, that's generally where I asked for questions for this kind of thing. It's Diabetes Connections of the group. I'll link it up in the show notes. As always, I know not everybody's on Facebook, please feel free to always email me if you email me now about Dexcom. I'll save those questions until the next time we talk to them. It's Stacey at diabetes connections.com. Again, it's in the show notes and it's on the website. But I get it not everybody is on Facebook these days.
To that point, at the very beginning of the show, in that little sponsor tease before things even begin, I mentioned club 1921. So let me tell you a little bit more might be an update for some of you. Maybe some of you are hearing about this for the very first time. Briefly, club 1921 is a website. It's a project I've been working on for a long time. And it is a place where anyone with any type of diabetes can find events anywhere in the United States. We are in beta right now. I invite you to go to the website club 1920 one.com. Until around, check it out. Let me know what you think we've immediately identified we went into beta, late last fall several things mostly about the signup that need to be fixed, those could be fixed by the time you log in, my guess is closer to the end of January. There's a little bit of confusion there. I'll explain in a moment. But other than that, it's pretty well set.
The idea here is that instead of a Google Calendar or something like that, this would be a website where you go, you sign up, you tell us what kind of events you're looking for, and then you never have to come back, we'll email you automatically. When events that meet your criteria are edit, very easy. So you pick your type of diabetes, you pick your location, you pick which type of events you want, you pick your age, I mean, you can just say I want everything in every category you can kind of go through, but whatever you pick, and you can change those if you want to come back and change your filters, but whatever you pick, we will email you when those events are added.
If you want to add events. There are two types of events you can add one we're very creatively calling events. This is your JDRF walk. This is your friends for life conference. This is your hospital education for people with type two. It's an event by an organization a was a staff an event where they expect lots of people or it's regularly scheduled, or there's a fee, that kind of thing. The other kind of events we're calling Hangouts. These are my favorite types of events. I love what we're calling Hangouts. This is your mom, coffee, your kid play date at a playground, you know, you're going out to a bar, post COVID, with your adult friends with type one, hang outs are not put on by an established organization. They're put on by people like you and me, we don't have a staff, we just want to meet people in our area. When you're adding those. That's where a lot of the confusion came up in the registration process. Because if you want to add events or Hangouts, you actually have to sign up in a different way.
So I'm going to talk more about that as the weeks go on. We're fixing that part of the website. But if you try to sign up and you see some confusion, it may be because you are trying to add an event or a Hangout. If you want to just sign up to learn about the events and Hangouts, it should be pretty simple. But if it's not, if you have any questions, any suggestions, please let me know. Email me Stacey at diabetes connections.com. Pretty soon you'll email me Stacey at Club 1920 one.com You're going to be hearing a lot more about this because I'm so excited about it. Yes, I know, we might not have a lot of events this year, that's fine. We're going to have events, eventually, in the diabetes space. Again, we're gonna have lots of events, and social media, Facebook, even things like Eventbrite are a terrible way to get the word out about them. And it shouldn't be work to find them, you should be able to just raise your hand and say, I want to know about this stuff. And it should automatically come to you. And that's what I'm hoping to do here.
Okay, back to our regular schedule with the podcast. We will have our Wednesday in the news that's live at 430. Eastern on Wednesday on YouTube and Facebook, and then 445 on Instagram. And then that turns into an audio podcast episode for Fridays. And hopefully next week, we're back to Tuesday and Friday. And we won't do any of this nonsense of pushing episodes around. But I do appreciate your patience. Again, I didn't want you to wait a week for this interview. All right, thank you as always to my editor, the very flexible and understanding John Bukenas from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself. Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

Jan 7, 2022

In the News... top stories this week: A second glucose-regulating molecule discovered, CGM use closer to diagnosis helps T1D kids, Lilly discontinues "Journey Awards," study on Dexcom use in hospitals, and why does this concept car share a diabetes tech name?
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Join us LIVE every Wednesday at 4:30pm EST

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Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription: 

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. All sources linked up on our Facebook Page and at Diabetes-Connections dot com when this airs as a podcast.

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In the News is brought to you by The World’s Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com.

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Our top story.. You know insulin helps regulate blood glucose. Now scientists have discovered a second molecule in the body that seems to do the same thing. It’s produced by fat tissue but uses a different molecular pathway.. so it’s hopeful this could get around insulin resistance. These scientists say the hormone, called F-G-F-1 suppresses breakdown of fat cells into free fatty acids and regulates the production of glucose in the liver. Because it does this in a different way from insulin, they’re calling it a second loop. Very early here but very intriguing.

 

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New study out of Stanford says setting children and teens up with a CGM shortly after a T1D diagnosis.. results in a lower A1C a year later. They looked at kids diagnosed in 2018 to 2020… and compared that group to other children diagnosed four years earlier. In that first group, about 90-percent started CGM in the first month.. in second group it was under 2-percent that started that early.  At diagnosis, the children in the newer cohort had higher A1c s. At 6 months and 12 months after diagnosis, the patients in the new cohort had significantly lower A1Cs than the other kids. These researchers say the news is more evidence to get insurers to cover the devices.

https://healthier.stanfordchildrens.org/en/kids-early-use-of-diabetes-technology/

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A new risk factor for type 2 mostly affects women, and it’s in about 10-percent of the population. A new study says about one in 10 adults has a lump in their adrenal glands that, though otherwise harmless, increases production of certain hormones that increase the risk for Type 2 and high blood pressure. About 70% of those with them were women, most of whom were 50 years old or older. It’s called mild autonomous cortisol secretion and these researchers say we should start screening for it.

https://www.upi.com/Health_News/2022/01/03/adrenal-tumor-diabetes-blood-pressure-study/2471641237308/XX

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After almost 50 years of honoring people with diabetes with anniversary medals, Lilly Diabetes is phasing out the Journey Awards. Awards were given to patients for 10, 25, 50 and 75 years. A Lilly spokesperson confirmed the news to me today.. saying “We periodically need to re-assess and prioritize programs as the environment and our business shifts. We believe our decision will allow us to focus on programs that we hope bring the most value to people living with diabetes.” They encourage people to check out the Joslin Medalist program and I’ll link that up.

Joslin.org/research/our-research/medalist-program-study

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Movement on a couple of court cases involving insulin makers. Sanofi lost its appeals court bid to revive patents on Lantus. You’ll recall that last year, Viatris got approval for Semglee, it’s long-acting insulin, which is basically the same thing and is approved for the same indications as Lantus. Sanofi is facing an antitrust lawsuit accusing it of obtaining some 20 patents in an effort to delay competition. Viatris has been knocking out the patents in court.

https://www.bloomberg.com/news/articles/2021-12-29/sanofi-loses-bid-to-revive-lantus-solostar-insulin-pen-patents

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A federal judge has pared down a class action lawsuit accusing the biggest insulin makers of racketeering. Novo Nordisk, Sanofi and Eli Lilly  are accused of scheming together to inflate prices. However, the US District Judge ruled that claims under the racketeering laws of several states (except for Arizona's) must be dismissed… because the laws do not allow claims by plaintiffs who bought the drugs through intermediaries, such as insurance companies, rather than from the drugmakers directly. The same judge did allow these RICO claims to proceed earlier this year in a separate class action against the companies brought by direct purchasers.

https://www.reuters.com/legal/litigation/sanofi-lilly-escape-state-racketeering-charges-insulin-price-battle-2021-12-17/

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New look at CGM accuracy in hospitals, mostly for people with type 2. This study looked at the Dexcom G6 and didn’t measure how it influenced care, just whether the readings were accurate compared to finger sticks.  As you’d imagine, the readings were less accurate at the extreme highs and lows, but the researchers concluded CGM technology is a reliable tool for hospital use. The FDA allowed expanded Dexcom use in hospitals less than two years ago, so this is still very new.

https://pubmed.ncbi.nlm.nih.gov/34099515/

 

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Dexcom partners with another new company.. this one is called SNAQ.  Snaq is a diabetes app that is designed to track both your diet and your blood glucose… and can give you nutritional info of your food just by taking a photo with your smart phone. Good write up & review on that  from Diabetes Daily which I’ll link up. Apparently, it works pretty well! The partnership means all US based SNAQ users can automatically view Dexcom CGM Data together with their meals inside the Snaq App

https://www.diabetesdaily.com/blog/we-tried-the-snaq-diabetes-app-695058/

 

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Hat tip to our friend Nerdabetic who spotted this ridiculous story. LG Electronics introduced a new in-vehicle infotainment concept tailored to autonomous vehicles. It’s designed to blur the distinction between home and car .. This is a car cabin that can turn into a space where passengers work, watch TV, exercise or experience camping virtually. The name? LG Omnipod

It was presented at the Consumer Electronics Show this week. No comment yet from Insulet, the makers of the Omnipod with which most of us are already familiar.

http://www.koreaherald.com/view.php?ud=20220103000636

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Before I let you go, a reminder that the podcast this week is all about diabetes in media, a really deep dive into how representation on screen influences those watching. Listen wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.

Next week’s episode will be a little bit delayed.. released either very late Tuesday evening or early Wednesday morning. I’m set to talk to the CEO of Dexcom on Tuesday and I want to get that to you as soon as I can.. rather than hold it. So thanks for your patience on that.

That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

Jan 4, 2022

Diabetes on TV and in movies is rarely anything close to accurate. Turns out, those media misconceptions can be real-life harmful. This week, Stacey is joined by Dr. Heather Walker, the co-author of (Un)Doing Diabetes: Representation, Disability, Culture and Dr. Phyllisa Deroze, who contributed a chapter called “Laughing to Keep From Dying: Black Americans with Diabetes in Sitcoms and Comedies.

Dr. Deroze & Dr. Walker both live with type 1 and both have difficult diagnosis stories that influenced their experiences with diabetes going forward.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

More about Dr. Phyllisa Deroze

More about Dr. Heather Walker

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Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription:

Stacey Simms  0:00

Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom.

This is Diabetes Connections with Stacey Simms.

This week, diabetes on TV and in the movies is rarely anything close to accurate. And those media misconceptions can be real life harmful. Here's one from the sitcom 30 Rock.

 

Dr. Phyllisa Deroze  0:30

Tracy has diabetes there. And he does this skit where he replaces his foot with a skate. And he's like I'm practicing for when I lose my foot to diabetes. And that is the thing. There was a diabetes diagnosis and the next scene, he's already imagining himself with an amputation.

 

Stacey Simms  0:49

That's Dr. Phyllisa Deroze, who wrote a chapter in a new book we're talking about this week. The book is called (Un)Doing Diabetes Representation, Disability Culture. And it's authored by Dr. Heather Walker, Dr. Deroze and Dr. Walker both live with type one, and they join me for a great conversation. 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. This is our first show of 2022. So Happy New Year, everybody. I hope you're doing okay. Still stressful days for everybody. But hopefully you can kind of come along with me every week, as we talk about what we're finding interesting in the diabetes community.

And I say that because 2021, I decided I was going to focus on technology for the year, I was going to try to do as many episodes as I could, talking about new technology talking to these companies. And I did that although I gotta say the log jam at the FDA made that a little difficult, right? I mean, we thought we'd have a lot more new technology. And a lot of companies will not talk about stuff until it is FDA approved. So this year, I'm going to stay with that because the technology episodes are what you have told me you are the most interested in, in fingers crossed are going to have some approvals pretty soon. But I gotta tell you, I've also decided that I'm going to do shows on just whatever the heck I find interesting. I started this show seven years ago, this coming summer, and honestly, this might be the last year of it in this form. I mean, I love it. I love doing this but seven years is a long time for any project. I have some new things that I'm working on. I'm not sure how much time all of it is going to take. I'm not abandoning the podcast by any means. I want to hear from you too. As we go forward. You know, as the year goes by, I will keep the lines of communication open. We will figure it out together.

This episode does fall into the category of something I am fascinated by and I love to talk about and that is diabetes in media. And by the way separately. Both of my guests this week have bananas misdiagnosis stories, we get to that right out of the gate. Wait till you hear what one of their doctors ended up doing. I have never heard this happening before. It was pretty wild. And we will talk about the book I mentioned that it is (Un)Doing Diabetes Representation, Disability Culture. It is authored by Dr. Heather Walker and Dr. Dr. Bianca C. Frazer. It contains essays by other authors including Dr. Phyllisa Deroze a little bit more about the book in its public description. It says undoing diabetes is the first collection of essays to use disability studies to explore representations of diabetes across a wide range of mediums from Twitter to TV and film to theater fiction, fan fiction, fashion and more. In undoing diabetes Authors deconstruct assumptions the public commonly holds while writers doing diabetes present counter narratives community members create to represent themselves.

And just a little bit more about my guests. Dr. Heather Walker is Associate Director of qualitative research at the University of Utah health. She was diagnosed with type one at age 11 in 2001, and Dr. Phyllisa Deroze began blogging at diagnosed not defeated almost immediately after being misdiagnosed. She found out later with type two diabetes in 2011. And now she has been correctly diagnosed with LADA. Dr. Phyllisa Deroze is also the founder of Black diabetic info after the interview, and it's a pretty long interview. And that's okay. They have a lot of great stuff to say, I'm going to come back I want to tell you about something that happened to me. It's not quite diabetes in media, but it is diabetes jokes. So I want to tell you how I handled something in a Facebook group. But I'll come back and do that after the interview.

 

Dr. Phyllisa Deroze, Dr. Heather Walker, welcome. I'm so happy to talk to you both. Thanks for coming on.

 

Unknown Speaker  4:50

Thank you.

 

Stacey Simms  4:51

So let's start if we could, I mean there's so much to get to and I was so excited to see you both at friends for life and see the presentations that you were doing but which You mind kind of backing up a little bit and kind of letting people get to know you? We could start just tell me a little bit about your diabetes diagnosis story. And Phyllisa, let me let me ask you to start with that if I could.

 

Dr. Phyllisa Deroze  5:12

Um, yes, I was diagnosed shortly after getting my PhD in English literature. I had moved to North Carolina, I experienced the classic symptoms of hyperglycemia. I had seen a physician who didn't check my blood sugar told me that I just needed to drink Gatorade because my electrolytes were off. A little later I was in the hospital. Blood sugar didn't register. Finally, I think first reading was like 597, or something like that. So I was told I had diabetes, and what type didn't get clarified until I was discharged. When I was discharged. I was told that I had type two diabetes, and I lived with that diagnosis for eight long years, it was inaccurate, I was misdiagnosed. I live with latent autoimmune diabetes in adults. And I was correctly diagnosed and joined the T1D group in 2019. I get this

 

Stacey Simms  6:06

question. Every time I speak to somebody like yourself who was misdiagnosed like that it happens so often. How do you live with what is really type one for all that time? I mean, I can't imagine you felt very well.

 

Dr. Phyllisa Deroze  6:20

I did. Okay, after diagnosis, I had a pretty long honeymoon phase, I actually lived about three years with just diet and exercise. I think one thing in the T1D community is that we don't talk enough about honeymoon phases and people who have latent autoimmune diabetes and adults, because so much of the common knowledge about type 1 diabetes is that everyone is insulin dependent. And that's not necessarily true, everyone will become insulin dependent. And that's an important message, because I never thought to have test done until I went into DKA. Again, so I myself didn't know that it was possible to have type 1 diabetes have a long honeymoon period and be misdiagnosed.

 

Stacey Simms  7:09

Yeah. The more I learned about Lada, it is so similar, but it's so different. There's a lot more to it, I guess, is what I would say, than I had realized for sure. Heather, what is your diagnosis story? When were you diagnosed with diabetes?

 

Dr. Heather Walker  7:21

So I was diagnosed at 11. And I also sort of have a misdiagnosis story. So I had diabetes, and I was in what I assumed to be a honeymoon phase for three months before my diagnosis actually came around. Because I was seeing a physician at the time who looked at me, skinny white girl, whose parents were really afraid because she kept losing weight, who was just about to hit puberty, and he thought eating disorder. No matter how many times I told him, I was eating everything in sight and drinking everything in sight. That's still what he firmly believed. Luckily, at about three months after I started coming in to see him for this and for the symptoms, he went on vacation, and I got to see his pa instead. And his pa John, you know, it's so funny. I don't even remember his last name. But just he's just warmly John to me, right? He just looked at my chart, and he knew right away, it's like, oh, you have diabetes, you know, so calmly, and I remember that freaking me and my mom out. We were in the appointment. It actually was my dad. But still, the first thing that we did was went and got me a doughnut because I think my dad was like, alright, well, maybe this is it. You know, he'll never eat another doughnut. Yeah, like, we really don't know about this, we don't know what's gonna happen. And so they didn't do a glucose tests on me. They just drew blood. So we didn't know right away anyway. And then it was like, you know, the next day, they called and said, You need to come to the hospital and for US history.

 

Stacey Simms  8:45

I'm guess I'm gonna get ahead of myself a little bit here. I don't want to start drawing conclusions too early in this interview. But it is interesting how both of you were misdiagnosed. Somebody else made an assumption, because of how you present it to them. I've got to imagine. So Heather, let me ask you. And then Phyllisa, I want to ask you the same question. But other how has that stuck with you? I mean, you you kind of set it so matter of factly they're like, Hey, he assumed I had an eating disorder. Did you kind of carry that with you?

 

Dr. Heather Walker  9:11

Oh, yeah, absolutely. I think I got a huge chip on my shoulder. From that. I mean, there's something about you know, being 11. And being in a world that already doesn't take you seriously, and then have a life threatening disease thrown at you. And your doctor doesn't believe what you say, even before diabetes. And Stacy, I've heard on episodes of your podcast you talking with with teens about or people who were teens with diabetes, about how fast it speeds your life up, right? Like you don't really get to have a childhood you don't really get to be a teenager and like, you know, carry on with reckless abandon because you just can't because there's all these safety things that you need to take into account. And so, but even before diabetes, I was kind of like that, like I was, you know, a 30 year old and a 10 year old body. I've been the same Age since then until now, but that, for sure gave me a big chip on my shoulder. It made me want to like, look into everything and see as it's happening to other people is like what's going on with this diabetes stuff.

 

Stacey Simms  10:13

Phyllisa, I'm curious for your experience too, because as you you kind of already said something interesting, which was like, Well, I didn't know how were you supposed to know? Right? The doctor supposed to know.

 

Dr. Phyllisa Deroze  10:23

Right. What's interesting is that when I was told that I needed to look into LADA because I had given a speech in Dubai to a roomful of doctors from the MENA region, Middle East and North Africa. And I was simply telling them my diagnosis story, very similar to what I share with you is a little more in depth, but pretty much that was the basics. And you know, I'm 31 years old at the time. And so during the q&a, some of the physicians from Tunisia, they raised their hand, and I was like, yes, they were like, well, your story kind of sounds more like LADA than type two. Are you familiar with it? And I said, not really. I mean, I know Cherise Shockley has it, but I don't know any more details than that. And it was at the lunch afterwards, one of the physicians came up to me and she said, you really ought to look into seeing if you have a ladder, and don't stop until you get the answer. And that kind of haunted me like, don't stop until you get the answer. But I just thought it was a simple request. So I asked my Endo, I got told no, I asked three months later, if I had ever been tested, the answer was no. Well, can I get tested? No. I saw a second opinion. No, you have type two. So I definitely think their view of me being an African American woman living with obesity played a lot into the constant denials. It took me over a year, another decay episode, and begging my gynecologist to run type one antibody testing for me in order to get it. So it wasn't easy. I literally had to not stop until I get the answer.

 

Dr. Heather Walker  12:11

For Phyllisa, it was your OB they finally gave you the testing you wanted?

 

Dr. Phyllisa Deroze  12:15

Yes. Because I told her, I can't get an endocrinologist to run this test. I know I'm in decay, a I'm losing weight rapidly. And she listened to me and she said, Okay, she said, I don't do endocrine, I do you know, OB GYN. So we were literally on her computer on Google trying to find the codes to request the testing. And so she was calling around, what do I put in to order this? And I remember when she called and she said, Listen, you know, this is out of my field. But come get these results, because your endo was going to need to see them. That was all on me. I got the results. I just remember seeing the get 65 should be below five. And mine was greater than 7500.

 

Stacey Simms  13:05

Oh, I'm almost speechless. I mean, I'm not I'm never actually speechless. I came in less than that happened. But the idea that you have to work so hard to get those answers, I've got to assume just like with Heather, that had to inform not only your experiences going forward, but the way you help other people because you both are extremely active in the community. You You're both very prolific writers, you both have, you know, studies and presentations that we're going to talk to, but Felicity, that whole experience with somebody else saying, Well, I think you have lotta to I got to get answers for myself to finally getting them. When you look back on that, how does it inform how you talk to other people about

 

Dr. Phyllisa Deroze  13:43

diabetes? I tell people definitely to be way more assertive than then imagined. Like, I honestly did not think it would take me constantly asking for the results. I thought it was like a simple test. I mean, you're testing my cholesterol, you're testing my a one C, like you're already getting a vial of blood, like just check off one antibody. So I thought it was something simple. And it turned out it was not, which was very frustrating for me. Because like in that I realized my education level didn't matter to them. I was literally like you are African American living with obesity. And that was what I believed to be their motivating factor to deny me testing. And what's so problematic about that, in addition to everything else you can imagine is as my physician Wouldn't they want to know that they're treating the right condition. Yeah, I'm asking so my records actually have a note from my endo saying, Melissa asked multiple times for type one antibody testing, and I denied it

 

Stacey Simms  14:55

literally says I denied it in your file.

 

Dr. Phyllisa Deroze  14:57

Yes. Wow.

 

Stacey Simms  14:59

I'm just sorry. I got to ask, did he show that to you as an apology? Or did you sit there in the room while you made him write it?

 

Dr. Phyllisa Deroze  15:05

What I did was I refused to leave the appointment. I love it until there was this moment of record, like, I need you to recognize that I have been asking you for over a year for this test. We just need to come to that because it was like, Oh, you need insulin, let's go. And, you know, I was kind of being escorted out of the room. And I said, No, I'm literally not going to leave this chair until we have this conversation. And so I didn't know that my endo would put it on my records. But I definitely refused to leave until that conversation was had, they did apologize. And there was a note and my files.

 

Stacey Simms  15:47

It just didn't have to be that hard. This could have been an episode in and of itself. Want to make sure to get to that the research or the publications that sparked my interest here.

 

Right back to our conversation and right was like kidding about the diagnosis stories, and then her doctor putting in her chart that he was wrong. Oh my god.

Alright, Diabetes Connections is brought to you by Dexcom. I want to talk for a minute about control IQ, the Dexcom G6 Tandem pump software program. When it comes to Benny's numbers, you know, I hardly expect perfection, I really just want him happy and healthy. And I have to say control IQ, the software from Dexcom. And Tandem has completely exceeded my expectations, Benny is able to do less checking and bolusing. And he is spending more time in range. This is in a teenager, a time when I was really prepared for him to be struggling, his sleep is better to this is great for all of us basal adjustments possible every five minutes, the system is working hard to keep him in range. And that means we hear far fewer Dexcom alerts, which means everybody is sleeping better. I am so grateful for this, of course Individual results may vary. To learn more, go to diabetes connections.com and click on the Dexcom logo.

Now back to the interview. And we are moving on to Dr. Walker's book. Heather, tell me about the book that's coming out.

 

Dr. Heather Walker  17:14

Okay, I'm so excited to be talking about this. So you might hear that excitement in my voice. So it's awesome. The title of the book is called undoing diabetes representation, disability culture, that's a full title. And it's going to be released very soon, by the end of the year, we hope it's a collection of essays that looks at diabetes in a new way, the volume or the volume as a whole. You know, it points out that all the stereotypes of diabetes that the public really buys into are like maintained through a lens of individualism, our society looks at diabetes as a problem of the individual person right of their choices. And so to respond to that public tendency, right to like focus on the individual, all of our authors in the book do the opposite. So in the collection, they ask questions like, What do individualistic stereotypes reveal about the social conditions for the diabetic person? So it like flips it on its head? And also what do they conceal, right? What is stereotypes hide? What do they prevent us from seeing? And how do these like harmful narratives, these harmful assumptions, these stereotypes that just break down our community? How do they reinforce ideas that the public already has, for what constitutes like a normal or a good body, which is just like, as a person who's living with diabetes, this makes me so excited. And then I'll just add one final thing about the book, which is our collection is really unique in that we use disability studies frameworks to unpack all of these questions. What are disability studies? So this ability studies is a field of study that looks at the social conditions of disability. So how is disability perceived in society? How is it represented on the screen, and all of those types of things. And so we have frameworks in the field that we use, it's kind of imagined, like a camera lens, right? That's kind of like a framework and the camera lens has a filter on it. And so when we look at this movie, or this film, we're looking at it through a specific lens with a specific filter. In our book, all of our authors are looking at different types of media, through these disability studies, frames or lenses, and sort of seeing how they operate in society and what they do, and then poking holes at what it does. And every chapter is brilliant, and Phyllisa is going to talk about hers, but as a volume, like I could not be more proud of this collection and all the work that it does. And all of like the change and the shifts it's going to make for readers.

 

Stacey Simms  19:43

It's so interesting to me because of the mediums that you use so let's let's ask Felicity if you want to if you could talk about what you presented friends for life, what you talked about you were looking at TV shows, right and not unfortunately not more current ones which sometimes get it right.

 

Dr. Phyllisa Deroze  19:59

Um, yeah, I was the title of my chapter is laughing to keep from dying black Americans with diabetes in sitcoms and comedies. So I was looking at television shows as well as movies, and focusing on how those representations make meaning of diabetes within African American communities. Part of this started, when I thought about the first time I heard you have diabetes, and I was in the emergency room, my first thought was, I'm going to die. Like that. Was it? Like, I just thought like diabetes meant death? And when I started unpacking that, to find out where did I get that messaging from? Because no one in my family has diabetes. I didn't personally know anybody with diabetes. It really came from television and film, and of course, our media. And I thought it would be really nice to look at some of these classic movies and TV shows that are very popular in African American communities to see what story is told when you focus on the diabetes characters.

Can you talk about some examples?

Yeah. So for example, like Soul Food is one of those classic staple in African American film, a memory just like the color purple is something that people cite quotes from all the time. But when you look at Soul Food, it really stems from Big Mama who has diabetes. We understand this because she burns her arm on a stove. And a couple of things later, she passes away, she has an amputation and then a stroke. And she's no longer with us. The Big Mama character also comes up in Tyler Perry's plays and his films in his television shows. And again, these are staple matriarch characters who have diabetes. Now Madea lives on because that's a part of, you know, Tyler Perry series, but she has diabetes Boondocks I look at and of course Blackish. So blackish, I would say is probably where we first see the the image turn, where we first see a character with diabetes, checking their blood sugar, and all the other stuff we don't. And so what that tells us is that diabetes is going to cause either a slow death or quick death, perhaps an amputation, if you're familiar with 30, Rock. Tracy has diabetes there. And he does this skit where he replaces his foot with a skate. And he's like I'm practicing for when I lose my foot to diabetes. And that is the thing, there was a diabetes diagnosis, and the next thing, he's already imagining himself with an amputation. So when we look

 

Stacey Simms  22:59

at something like this, what do we take from it now? I mean, we you can't go back and change those representations. What do you want us to kind of learn from them.

 

Dr. Phyllisa Deroze  23:08

But I would ideally like for the film industry, to change their portrayal of characters with diabetes, I mean, all characters, not just African American ones. But last year, there was the release of the Clark Sisters first ladies of gospel biopic on lifetime. The Clark Sisters are like a staple in African American culture. They were these gospel singers that were absolutely phenomenal. The Lifetime movie of them ended up being the highest rated Lifetime movie and four years. This comes out last year, the mother has diabetes. She is seen not taking her medication, not caring about her diabetes. And of course, there's all these tragedies that happen. And the thing is, when we don't see African Americans using CGM technology, insulin pump technology, we don't see checking blood sugar. What happens with those messages is that it becomes the common assumption. So when someone goes to the doctor, the doctor may think, Oh, well, black people don't check their blood sugar. And so then that begins to impact the individual prime example. I was in a setting once. And a woman said, Oh, I didn't think black people ate vegetables. What? Yes, yes, literally said this. And I was just so floored, but I thought, okay, she didn't think black people ate vegetables. And so I'm wondering like, what images you know, is she being fed? Right? Yeah. came from so the thing is, is we have to look at our television and our film, not just as sources of enjoyment for some people, but also as information that provides an understanding about certain people. So literally in all of the films and television shows that I look that there were probably two that showed the African American character with diabetes, actually living a rather fruitful life. Outside of that it was amputation and death. And so when someone is diagnosed with diabetes, like I was, and I didn't know anyone with diabetes, instantly, the first thing I thought about was death and dying. And that association that comes with it, when I hadn't seen people living well, with diabetes, I just want to say this. When I was first diagnosed, I went to Barnes and Nobles sat down in a bookstore with one of Patti LaBelle cookbooks, and I flipped to a page and she said, in this book, I had diabetes, but I wasn't going to let diabetes have in me, and I cried, right there in the Barnes and Noble, because that was the first time that I had ever seen or read or heard someone who looks like me diagnosed with diabetes, and they were determined to continue living their life. Like if you want to see that image, where do you go? Because our television and our films are not that place. And that's also the fertile ground for which black diabetic info on my website started and my blog, because I didn't know where to go for that. Like, I got it in Patti LaBelle cookbook, and I cry. But then where can I go to see it again? Yeah, didn't have an answer. Heather, I

 

Stacey Simms  26:53

want to come back to you and ask you something I saw you posted about on on Twitter. A couple of months ago, Pixar posted a teaser for their new movie turning red, which I think comes out in the spring. And there's like a split second shot of a kid wearing some kind of what looks like diabetes device. It's, you know, an insulin pump or a CGM. And they confirmed it. I actually talked to somebody behind the scenes at Pixar and fingers crossed, we'll have them on the show in a couple of weeks. But it is a diabetes. I'm so excited. But it is a diabetes device. But you were pretty adamant about one point, would you mind sharing that? And why? Sure.

 

Dr. Heather Walker  27:30

So when I saw that, you know, I came late to the show. Let me preface with that, right. Like, by the time I saw that trailer, the community was abuzz. Like they everyone was so excited. And what I saw was, Oh, my goodness, we see a character with type 1 diabetes. And as someone who is completing a chapter for a book of essays on representations of diabetes, you know, my antenna went up when I saw how the community was claiming that. And I just thought to myself, This is not a representation of type 1 diabetes, this is a representation of diabetes, because people with type two can and should have access to those devices as well. And so for the type one community to be exclusive, in this moment, in this grand opportunity for all of us to celebrate together, really sort of broke me down in a way, you know, I was like, Why? Why can't we just keep this open? Why can't we make this a win for everyone? Instead of saying, quote, unquote, type two people don't use these devices? And I think that the reason why it was like it was like a jab in my heart is I think that that claiming does something in society, right? It, it functions to show us that large groups of the diabetes are the type one community feel like, maybe type two diabetics aren't using that technology, because they're the ones who don't care. And they're the ones that the stereotype is about. And so that shows me that we have pockets in our type one community that buy into the stereotype just like the public does.

 

Stacey Simms  29:06

I'm looking at the description of the book in terms of the different mediums you use Twitter, to TV to film to theater to fiction, fan fiction.

 

Dr. Heather Walker  29:13

Yeah, we have a chapter, whatever author of your chapter covering a segment of fan fiction, and it's wonderful and actually, that author and she discloses in her chapter as well, so I'm not outing her. She also lives with diabetes herself. And I'm pretty sure she has a physical science PhD. So this genre and this discipline is new for her and she just like, Oh, she did such a great job having us understand how diabetes is being pulled into fanfiction. Alright, we

 

Stacey Simms  29:46

now should have set this up better if you're not familiar, and I'm going to do probably a terrible job of describing this. If you're not familiar. Fanfiction is stories, poems, pictures, it's fiction, written by people who are Fans have a genre or fans of a certain bunch of characters, and then they kind of make up their own stories using the established characters most of the time. So in other words, you love Harry Potter, you write yourself into Harry Potter or you write a different adventures that the characters might have had. And it's accessible to pretty much everybody. Is that how I feel about fanfiction? Yeah, I

 

Dr. Heather Walker  30:18

think it's kind of a, you know, once you get into it, you know where to look. You can probably Google it. And you know, I'm not even really in the world of fanfic, full disclosure and transparency. But I feel like I want to beat now that I've read, I've read that chapter. So

 

Stacey Simms  30:34

these are characters people are writing about that loop with diabetes, or they are the just bringing diabetes into exactly as it sounds. It sounds silly, as I'm saying it out loud. Like I'm explaining it. I'm trying to, you know, hit it over the head to the to find a point. But just to be clear,

 

Dr. Heather Walker  30:48

yes. So I think in the pieces that this author talks about in their chapter, it's situations where the characters themselves do not have diabetes, and the fanfic authors write them having diabetes. Oh, so they add that to their character.

 

Stacey Simms  31:04

You know what we were doing that a long time ago? Because I don't know if you know, Heather, and Phyllisa, but Bob, the builder definitely has diabetes, because why else? Would he have that big belt around his equipment? Because that's where his insulin. So anytime we saw somebody on screen with that, he was like, Oh, he's got diabetes. I didn't mean to interrupt Heather. But that clarifies it for me.

 

Dr. Heather Walker  31:23

Oh, yeah. That's a perfect example. Right is imagine that we had a fanfic author who loves Bob the Builder when they were a kid. And now they're writing the whole story about Bob, the builder and his diabetic life. It's wonderful. The book itself,

 

Stacey Simms  31:37

is this something that's accessible to people? And I asked that I mean, is it more of an academic book, tell me a little bit more about that.

 

Dr. Phyllisa Deroze  31:43

So one of the things that I like about the book is that it's assessable. For a large reading audience, if you are a casual reader, you can get through it, if you are an academic, you can get through it. So it's not laced with academic jargon. But again, we are using theoretical frameworks, but in a language that is accessible to everybody. So that's one I definitely enjoy about the collection, is there something in there forever?

 

Stacey Simms  32:13

And that's a great point, because I think we do get a little nervous about academic type books, Heather, right. I mean, it's, it can be a little scary and off putting it away.

 

Dr. Heather Walker  32:21

Yeah. And I'll just add, you know, we have, so we have several authors who are like myself, and Phyllisa, who are scholars and community members, which is very nice, and just like really brings it home. And so, you know, you kind of know, as a community member, that you're going to get authentic pieces by people who are living with this, in addition to having a couple of us who are scholars and committee members, we do have chapters from community members, from activists who don't have their hand in academia at all, and they're writing about their personal experiences. And, you know, they're still talking about representation in different media, but they're doing so from their lens existing in the community existing in the world with diabetes. And if nothing else, although I, I would also say what, you know, Melissa said was true, all of them are accessible, but especially those that are coming, you know, from the mouths of babes that are coming from our community members, who, who many people who do pick up the book already know,

 

Stacey Simms  33:20

before I let you go, let me let me pose this question to each of you in kind of a different way. And that would be you know, full. So you mentioned blackish, being a bit of a turning point, the show where people are shown, you know, a character shown checking blood sugar. I'm looking back over the last year and thinking of a more accurate depiction of diabetes, or at least type one with the Babysitter's Club on Netflix with we'll see with Pixar is turning red, but with Greenland, you know, written by someone who's married to Greenland, the movie Written by someone who is married to a person with type one, do you think things are getting better? And and I would ask you, as well to include the black community, because we don't talk about that enough. You know, I mean, I'm trying to think if all of those I mentioned they did not feature people of color. Do you think it's getting better? I mean, what would you like to

 

Dr. Phyllisa Deroze  34:06

see, I would like to see more diversity as we get better in the American film industry. When I look at all the films that I studied, type 1 diabetes is grossly under represented like none of these characters have type 1 diabetes, which again, if you think about myself, 31 years old, being diagnosed, I never knew type 1 diabetes could be an option. I'm still not seeing African American characters using technology wearing CGM. Often when I'm out in public. People are asking me about my devices. It's the first time you're seeing them. I'm explaining insulin pumps. And so while things are getting better, I would say within shows, television shows and films that are popular within African American characters. Progress is about Very slow on that. And

 

Stacey Simms  35:01

Heather, from where you stand. Could you share a little bit about what you think is going on in media? Are we getting better?

 

Dr. Heather Walker  35:07

Yeah, I think Phyllisa what you're speaking to right is incremental ism. It's like we are getting better slowly, like painfully, slowly, bit by bit. I mean, I'm inclined to say yes, only because the number of representations that we're seeing are increasing. But, you know, I'm hesitant at the same time to say yes, because we still have to ask, okay, if we even if we have more representation, are they representations that are doing good for diabetic people in society? Right, like, not necessarily, Are they accurate? Or are they you know, a direct portrayal of what people experience? But what is the public taking away from that representation? Like, what are they leaving that with? And if we have a lot more characters all of a sudden who have diabetes, but the audience still thinks, Okay, well, diabetes is still what I thought it was, right? It's like overweight people over eating, making bad choices not exercising? If that's what they're leaving with, then the answer, of course, is no, we're not making progress, even if we're having more characters. And what I find is, what I think we would need to make really big change would be to centralize a character with diabetes instead of making them a sub character, right? Yeah, like for the baby sitters club. And Stacey is not a new character with diabetes is has old, right, like we've known that Stacey has had diabetes for a long time, it just wasn't being produced at the quality it's being produced at. So that's not really even a new one. But we do have new ones, like there's a just a year and a half ago, or so there was a new series called Sweet magnolias. And one of the characters there has, or is about to be diagnosed with diabetes, and it's the same, it's the same story. It's like, you know, if you don't fix your habits, you're gonna get diabetes, and you're gonna die like your mom and all these fear tactics. And so and I really want to be hopeful, Stacy, I really want to be hopeful and say, Yes, we're headed in the right direction. But I just don't know i We need people in the writers room with diabetes, and other health conditions and disabilities, to have a direct voice and call things out before they're produced.

 

Dr. Phyllisa Deroze  37:19

I agree 100%, we have to be in the room. Because some things they don't make sense. For example, blackish, you do see him check his blood sugar. However, once he puts the strip in the meter, he starts talking to his wife, and anyone who knows how to use a meter knows that you have about 30 seconds before you have to put a drop of blood on that thing, or else you've lost it. So even little things like that.

 

Stacey Simms  37:46

I had indicated that was the last question, but I got one more. And that would be and II feel free. Either one of you jump in? Or both? What can the community do? You know, sometimes I feel like, you know, I stopped correcting people online a lot of the time unless it's really egregious, you know, but if they make a joke, or there's a hashtag diabetes with dessert, or things like that, like I'm tired, you know, and then you have no sense of humor, you know, gosh, what can we do to try to fix this? Or what can we do to to improve the situation?

 

Dr. Phyllisa Deroze  38:15

I think, this research, this book, this podcast, these conversations are so important. So for example, prior to writing my book chapter, I didn't see anything talking about the representation of African American characters in television and film. Whenever I talked about diabetes characters, there was maybe the one mention of soul food, but like, there was a dearth there. So this book chapter hopefully helped spark the conversation in wider circles. And so by talking about it more, and rallying around these things, hopefully, the attention like first recognizing that there is a problem, and then getting think tanks together to talk about them is probably the best plan of action.

 

Dr. Heather Walker  39:06

I love that. And I would just add, you know, I think what the community needs to prioritize is inclusion, right? Like, we need to give up on being exclusive, especially in the type one community, and we need to open our doors to people with type two people with Ladda. People with all like, there are so many different types of diabetes, that even saying type one and two is, is exclusive. I really believe that if we can do that, and if we can elevate the voices of people with diabetes of all types, who are also people of color, then we'll make a lot of progress in our community because we'll start seeing those perspectives that we've been missing that make us as a community really limited to our own perspective. To me, that's the only way to do it. I love the idea of a think tank Phyllisa I think that's brilliant, and just absolutely, and I'm sure you would agree needs to be diverse, right? Like it can't Be a bunch of like, white people. I don't know. There's a lot we can do. There's a lot.

 

Stacey Simms  40:08

Thank you both so much for joining me. This is amazing. I'm so thrilled to have you both on the show, you've got to come back on there. We just kind of scratched the surface here. So thank you for spending so much time with me.

 

Dr. Phyllisa Deroze  40:18

It's a pleasure. Thank you for having me.

 

Dr. Heather Walker  40:21

Yeah, this has been so fun.

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  40:34

More information about my guests and about the book on diabetes all at diabetes connections.com. As you know, every episode has its own homepage with transcriptions and show notes and all that good stuff. The transcription started in January of 2020. And we're working our way back here in there, hopefully filling in all the blanks. But right now, not every episode before 2020 has a transcription.

And I should tell you just I don't want to get ahead of myself here. That Pixar movie that we talked about turning red. Since our conversation, they put out another trailer and it showed more diabetes gear, another child in the movie is wearing a Dexcom. So it looks to me I mean, really can't tell yet. But it looks to me like one kiddo has some kind of pump. And another kiddo has a Dexcom. So as I said, I had a contact at Pixar. And I've got another one now. And it looks like there might be an actor, a voice actor in the movie who has diabetes. So we're to sort this all out. And I should be able to have somebody on about this. I don't want to over promise. But the folks at Pixar have been really receptive. So that looks like they won't do it too far in advance because the movie comes out in March. So as we get closer, I'll keep you posted for it.

And I had mentioned a story before the interview about not necessarily diabetes in media, but about jokes. And I don't know about you, but years ago, I was on high alert for diabetes jokes, you know, I can't eat that, or the the hashtag of my dessert is diabetes. And I don't know, I got burned out. And I don't talk about it as much. I don't police it as much, certainly, but I couldn't help myself last week, at Christmas, I'm in a group. It's a very clever group. It's called fatten the curve. If you want to join it. It's a public group, a friend of mine in the Charlotte area started at the very beginning of COVID. Obviously, it's a play on flatten the curve. And as you would expect fatten the curve is all about food. And it's just become a place where people who cook and eat like to share their photos. And somebody posted around Christmas time, you know, it's my diabetic coma, and then all of this food. So I kind of did the do I want to go to I want to do this, or I want to get this person's face. So I just very nicely said, Hey, diabetes jokes are never cool. Not sure if you thought about that. But hey, the food looks absolutely delicious. You know, hope it was as good as it looked or something nice like that very casual and breezy. Just like Hey, dude, not cool. But moving on. And there's a couple of other people in the diabetes community who have joined that group, but it's not diabetes, it's just food. But you know how it is when when Facebook shows you something people, you know, jump in. So other people commented like, yeah, Stacey's right? Please think twice. And this guy apparently lives with type two posted like a non sequitur about his scientific studies and stem cells and all this stuff about diabetes. He did, obviously, not really sunk in I don't think, but he didn't respond negatively. And I just said, You know what, fine, I'm moving on, right?

But then a couple of days later, somebody else popped in, it was like, nobody can make a joke anymore. You're too sensitive, and why we're just too easily offended. And that's when I was like, Alright, now I need to respond. So I very nicely, I think it was nice. You know, I wrote a response. And I said, Hey, you know, once the guy said he had diabetes, you'll notice I didn't clap back, I didn't get nasty. We are all entitled to say whatever we want. But it's important to understand that what we say does have meaning and impact. And as you listen, I know, you know, all this, I did the standard. When we joke about diabetes, we don't do this with other conditions. We don't talk about a cholesterol coma, or a high blood pressure problem when we're eating big meals like this. Why is it only diabetes? And did you realize that actually, you know, the blame and shame that can be encountered here prevents people from seeking treatment or makes them feel like it's all their fault, and nothing they do will matter. I posted all that waiting for the response. There was none, which I'm really glad about. Because I don't want to argue I just it's exhausting. But everyone's not something like that pushes my buttons and I have to save something. Hopefully that group will just go back to posting yummy pictures of food because it's been two years and we haven't had any issues like that. I mostly post pictures of what my husband cooks. Because I don't like to cook and what I do cook isn't really Facebook, really.

So I guess we're often running for 2022. We are back to the Wednesday in the news episodes. I hope you'll join me for that either live on Facebook, YouTube or Instagram, or as an audio podcast which comes out on Fridays. Thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here soon, in a Couple of days until then, be kind to yourself

 

Benny  45:07

Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

Dec 31, 2021

Our top stories this week include Medicare further expanding CGM coverage, Beta Bionics has an iLet update, ADA announces new Standards of Care, a new study looks at using Fitbits to predict the risk of type 2, and more!

Join us LIVE on Facebook every Wednesday at 4:30pm EST

 

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode 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 – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast..
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In the News is brought to you by The World’s Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com.
XX
Our top story.. another adjustment for CGM coverage under Medicare. All types of continuous glucose monitors will now be included. The difference here is that it includes CGMs that aren’t approved for making decisions about insulin dosing – at this point, that’s really just the Medtronic brand. This follows another decision in July that covered CGM use with any insulin – including inhaled insulin - and got rid of the four times per day fingerstick testing requirements. The new rule goes into effect in two months.
https://www.healio.com/news/endocrinology/20211222/cms-expands-medicare-coverage-for-all-cgms
XX
The American Diabetes Association is out with its annual Standards of Medical Care in Diabetes. Notable updates include: Screening for prediabetes and diabetes beginning at age 35 for all people;
Changes to gestational diabetes recommendations regarding when to test and who to test. Updated recommendations on technology selection based on individual and caregiver considerations, ongoing education on use of devices, continued access to devices across insurance companies, support of students using devices in school, use of telehealth visits, and early initiation of technology.
https://www.prnewswire.com/news-releases/latest-ada-annual-standards-of-care-includes-changes-to-diabetes-screening-first-line-therapy-pregnancy-and-technology-301448533.html
XX
Little bit of news from Beta Bionics, makers of the iLet Bionic Pancreas System. They’ve completed a randomized controlled trial for their insulin only pump.. this included 440 adults and kids over the age of 6 with type 1. The iLet is different in that you only put your weight in and the system learns you. No carb ratios or basal rates. You do still announce meals, but no carb counting.. just meal size. Public presentation of the clinical data is expected in the first half of 2022. They’re now enrolling into the screening protocol for the next step, the pivotal trial for their Bihormonal pump that would use insulin and glucagon.
https://www.globenewswire.com/news-release/2021/12/22/2356645/0/en/Beta-Bionics-Announces-Data-Lock-of-the-Insulin-Only-Bionic-Pancreas-Pivotal-Trial-and-Enrollment-into-the-Screening-Protocol-of-the-Bihormonal-Bionic-Pancreas-Pivotal-Trial.html
XX
You probably know there is a terrible shortage of endocrinologists in this country.. an estimated 80% patients with diabetes use their primary physician’s office for their diabetes care. There’s a new push for more endo fellowships.. These 1-year programs, with funding and accreditation, train interested family and internal medicine clinicians in intensive diabetes management. There are several in existence but there’s a new white paper on this getting a lot of buzz. However, critics say it would be a drop in the bucket and couldn’t graduate enough endos to make a difference. Everyone agrees that the problem needs to be addressed.
https://www.healio.com/news/endocrinology/20211229/endocrinologists-propose-diabetes-fellowship-programs-to-address-growing-gap-in-care
XX
Interesting study on the use of health wearables and changes in blood sugar. Wearables here refers to Fitbits, so they’re tracking activity not blood glucose. These researchers say their models can accurately identify changes in glycemic control among prediabetic adults, and this could be used to better allocate resources and target interventions to prevent progression to diabetes. Interestingly, the wrist wearable seemed to work better for people than the waist kind. Not a big surprise when you think about which is more popular for use outside of studies. Anybody use a waist wearable anymore? Let me know.
https://www.nature.com/articles/s41746-021-00541-1
XX
And finally.. a Tennessee man who’d never heard of JDRF just won a 2021 Ford Bronco in that organization’s long-running fundraising contest. Every year JDRF and Ford give away the truck – Henry Ford’s great grandson has T1D – and they’ve raised about half a million dollars with the contest. Derek Bonzagni entered the day before it closed this year.. he learned about it through an online forum for people who love Ford Broncos – not the diabetes community.. AND.. he and wife just bought a Bronco for her – before he won. So now they match.
https://www.healthline.com/diabetesmine/jdrf-ford-bronco-diabetes-sweepstakes#6
XX
Before I let you go, a reminder that the podcast this week is with Peloton star instruction Robin Arzon – she’s got great motivation to get us moving whatever your fitness level. Listen wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.
Next week we’re talking about diabetes in media with the authors of a new book. Hoo boy..
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

Dec 28, 2021

Peloton instructor Robin Arzon was diagnosed with type 1 as an adult, when she was already an endurance athlete and marathon runner. After her diagnosis, she was determined to keep those incredible fitness feats coming. Arzon is now Peloton’s VP of fitness programming, an ultramarathoner, a best-selling author, a new mom, and more. If you’re looking for some new year fitness inspiration, she’s got you covered.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

More about Robin Arzon

More about Gvoke HypoPen

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

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Episode Transcription Below:

Stacey Simms 0:05
This is Diabetes Connections with Stacey Simms.
This week, peloton, instructor Robin Arzon was diagnosed with type one as an adult when she was already an endurance athlete and marathon runner. after her diagnosis, she was determined to keep those incredible fitness feats coming.

Robin Arzon 0:24
I really have had to treat myself kind of like an experiment like get curious and just see and trust that even on the days that aren't my best, I'm trying my best and my best is good enough

Stacey Simms 0:35
Arzon is peloton’s vice president of fitness programming an ultra marathoner, a best selling author, a mom, and more. If you're looking for some new year's fitness inspiration, she's got you covered.
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, you know, we aim to educate and inspire about diabetes with a focus on people who use insulin. this time of year I always seem to have a fitness interview, right? That makes sense. It's the new year we're making resolutions. We're getting motivated. So you know, take a look back in years past I talked to Chris Rudan from the Titan games. I talked to Eric Tozer, who did seven marathons on seven continents in seven days, you know, stuff like that. But you don't have to have these incredible achievements, these these incredible goals. You know, this to be fit to stay healthy. I mean, I'm certainly never doing an ultra marathon. It's not one of my goals, especially as I get older, I want to stay moving. That's really important to me. So well, somebody like this week's guest Robin Arzon isn't I'm sorry, Robin isn't going to motivate me to ever run a marathon. She is going to inspire me to try a little more to do some different things. And I hope she inspires you in the same way as well. Whatever your fitness goals are for 2022
I have a story that I want to share about something that happened recently with me and Benny, it isn't really about new year’s resolution. So I'm going to keep it till the end of the interview. I'll come back and tell you he challenged me to do some things kind of an empathy exercise about type one, I failed miserably. That's the spoiler. So we'll get to that in a little bit.
This week's interview is one of my shortest ever I had very limited time with Robin. So I decided to not ask her about her diagnosis story. I skipped a couple of questions that I would usually ask, but in case you're not familiar with her, I wanted you to learn more. So here is a quick explainer that she gave beyond type one a few years ago, and we're playing this with their permission.

Robin Arzon 2:32
I am a reformed lawyer turned ultra-marathoner. I'm head instructor at peloton cycle as well as vice president of fitness programming. I'm on the Leadership Council beyond type one. I was an endurance athlete Well, before I was diagnosed with type one diabetes, I was diagnosed in February of 2014. So only a few years ago, as an adult, I was in my 30s when I was diagnosed. And it's been an interesting little dance I'm doing with my pancreas these days.
I had just returned from a trip to India. I was in India for about three to four weeks with my mom and my sister. And when I came home back to New York City, I thought I had jetlag or something like my body just felt really sluggish. And I had extreme thirst. That was the number of extreme thirst and frequent urination. And that was the number one thing that really was strange, because I know it wasn't dehydrated. And as an athlete, I kind of could tell immediately that something was off with my body. I had an awareness of type 1 diabetes, but certainly not on any kind of medical or even practical level. And I definitely didn't know how to how to live with it. That was actually my very first question after I was diagnosed was how am I gonna run 100 mile races? And that was a question pretty unfamiliar for my endocrinologist and so then I want an immediate search for all the technology that would allow me to train uninterrupted. I actually had a half marathon two weeks after my diagnosis and I and I ran it. And I think I was on a pump within a week that I had a Dexcom within 14 days.

Stacey Simms 4:27
Robin was diagnosed in 2012. She's now peloton vice president of fitness programming. She and her husband had a baby in 2021 and January just a couple of days from this episode going live. She is publishing a children's book and you will hear her talk about that. There is a video of this interview over on the Diabetes Connections YouTube channel if you want to watch I will link that up in the shownotes.
Full disclosure. The reason I had limited time for this interview is because Robin is on a media tour courtesy of Gvoke Hypopen so you will hear a lot about that in this interview ended agreed To do this, I also agreed to post information about Gvoke in the show notes which I have done. If you've listened for a long time, you're probably tired of hearing these disclosures. But if you're new, it's very important to me that I'm open and honest about what you hear on the show. And I really thought the tradeoff of hearing about Robin’s experiences and advice was worth it.

Robin, thank you so much for joining me and spending some time with me and my listener. So how are you doing today?

Robin Arzon 5:29
I'm great. So nice to speak with you. Stacey.

Stacey Simms 5:31
I know that you have a little bit that you want to talk about with Gvoke. They are a sponsor of my podcast as well. Let's just dive in and talk about that because being prepared is just part of the reality when you live with diabetes, right

Robin Arzon 5:42
100% I mean, in the landscape of things that are uncontrollable of living with diabetes and diabetes management, we have to control what we can control and Gvoke Hypopen is the first auto injector of medicine if we have a severe low blood sugar event, and the looming prospect of that can be scary. And as an ultra marathoner as someone who lives as an athlete lives with movement, you know, and I know your listeners are very, very well versed in the diabetes landscape, and probably can relate to that to a certain extent. I needed to take agency back, which is why I partnered with Gvoke Hypopen because recently, for example, when I ran the New York City Marathon, I had the Gvoke Hypopen in my race kit. Thankfully, I didn't need to use it. But it does give me peace of mind out there on the racecourse, you know, knowing that I have this medicine accessible to me, if I have a severe low,

Stacey Simms 6:31
I'm going to knock wood everywhere I can find some because yeah, I've had to use Gvoke or any kind of emergency glucagon in the 15 years since my son was diagnosed, have you ever had to use anything?

Robin Arzon 6:41
Thankfully, no, thankfully, I have not had to use it. And I'm very grateful for that. And I'm also grateful that I sought out the right care for myself. And I advocated for myself with my doctor. And I recommend folks do the same and of course, do their own, you know, investigation of safety and risks and allergies and all the things associated with with any medical prescription. But we have to advocate for ourselves and figure out what works for our lifestyles.

Stacey Simms 7:04
Alright, so you were diagnosed with type one as an adult, you were already an incredible athlete. And I think I heard you say somewhere that you ran a half marathon a week or two after your diagnosis.

Robin Arzon 7:14
Yes. So I had a half marathon, I think a week later. And then I had a 50 mile ultra marathon few weeks after that. So it was a blurry and really daunting time. And I had to figure out quickly, this new life, this new thing, I believe superheroes are real. And I know that folks living with diabetes, diabetes warriors are superheroes. And in my superhero toolkit, It now includes insulin, it includes glucose taps. It includes the you know, the Gvoke Hypopen and it's I developed a mantra actually, during that time that forward is a pace. There are some days when the next step is the only step that you can focus on and that's okay. But I figured it out because it was meaningful to me the first question I asked, when my endocrinologist said, you're going to be living with insulin, your pancreas doesn't produce enough or any, I thought, Oh, okay. And I said out loud, how am I going to cross the ultra marathon finish line I have in a few weeks. And we figured it out. And I made mistakes, and I figured it out. And I educated myself. And I want folks to feel that same empowerment of like, gosh, we're gonna figure it out. We're going to be ready. We're going to be warriors, and we're going to continue to be epic.

Stacey Simms 8:24
One of the biggest questions I got when I told my Facebook group for the podcast that we were talking was, again, knowing everybody is different. But you know, just what do you do to avoid lows? Because exercise? I mean, let's face it, some people with diabetes do not exercise because they are afraid of low blood sugar. How did you get past that? How do you avoid crazy highs, crazy lows, when

Robin Arzon 8:44
you're exercising, it is a lot of trial and error. And just like anything else, it's observing, just like observing how your body reacts to a certain food, you have to observe how your body reacts to a certain type of movement. For example, lifting weights, for me might make my blood sugar go up. Whereas of course, cardiovascular or aerobic things like the bike with running will make it go down. So I really encourage folks to get curious, start small, right? Well, you don't have to go out and run an ultra marathon. But maybe you know, you start with the 10 minute walk around the block and see what happens. And then you bring you know the glucose tabs or the apple juice with you, I always have some type of rescue carbs, right. And this is really where the Gvoke Hypopen can come in as well. Because you know, you've got that in a severe and you know, in the situation where we're really putting ourselves in a low blood sugar, severe low blood sugar circumstance, we have medicine that is on the spot that is going to react on the spot that gives me a lot of peace of mind. So it's that two pronged approach of daily diabetes management. And then you know, having this in a circumstance where things get a little bit more severe, or a lot more severe.

Stacey Simms 9:48
Yeah, we have quite a few people who said I take her class I see her all the time. Have you ever had a low blood sugar during instruction like when you're doing a class?

Robin Arzon 9:57
Thankfully, yes, I've gone low but It's all been manageable, drink some juice, keep it moving. I've never had to stop a workout, thank goodness. And that's literally 1000s of hours of practice of knowing my body and knowing the exact timing of like, okay, I'm going to drink a quarter of my smoothie. Eight minutes before this class, I really have had to treat myself kind of like an experiment, like, get curious and just see and trust that even on the days that aren't my best, I'm trying my best and my best is good enough. That is also encouraging. So So I encourage folks to give themselves that same grace, but also that same dose of bravery. You mentioned that there are folks of your listeners who are so scared that they're not moving, but they're not working out. And that really saddens me, because they're limiting their own potential. And why you're letting diabetes when when you do that.

Stacey Simms 10:46
I don't know if you're familiar with Don Muchow, who ran or walked from Disney Land to Disney World that she I did I

Robin Arzon 10:53
read about this. He was told

Stacey Simms 10:55
when he was diagnosed a long time ago, right. I think it was the late 70s. He was told do not exercise because it was too dangerous. That was a real thing that people were told not all that long ago. And he had to wake up one day and say no, no, you know, so I give you so I mean, sounds silly to say, but I give you so much credit for getting your diagnosis and saying no, no, I'm, I'm getting right back into it. And I've had the privilege of talking to a lot of people in the public eye like yourself who have treated lows while they're on camera. musicians who sneak a sip of orange juice or racecar drivers to kind of have it in their car. Can I ask you do you keep something sneaky? Is your water bottle is the other two maybe that people should look for?

Robin Arzon 11:32
One is water and one is juice. I always have some form of juice on me onset always, always, always. And yeah, no shame in that. If I need it. Take a sip, keep it and keep it moving. Thankfully, you know,

Stacey Simms 11:44
yeah, I think it's lovely to find out those little things because it makes our kids and a lot of adults feel better to know they're not alone. I mean, that's half of this. Did you find a community when you were diagnosed with type one because it can be very isolating?

Robin Arzon 11:57
You know, I was, as I mentioned, I was running ultra marathons at the time and there is an amazing ultra marathoner, Steven Anglin, very accomplished he does hundreds and hundreds of miles at a time really epic guy. He was the first person I went to outside of my medical team. And I was like, What the heck, what do I do and you know, he kind of talked me down. And you know, I hope to be able to pay that forward, especially as being part of this be ready campaign, I want to be a visible example of the fact that we can continue moving, we can continue being heroic in big and small ways in our very own lives. Um, you know, as a new mom, I read fairy tales to my baby girl every night and I want to live a fairy tale that is is is even stronger than things that she's going to read in books, and then pass the baton to hertz to one day live just as gravely, but it does require us to be prepared. And that is literally why I wanted to partner with the Gvoke Hypopen team. Because the reality is, the more prepared we are, the more peace of mind we're going to have. You can't control everything. And with any prescription medication, you have to speak to your medical provider to make sure that this is the appropriate avenue for you. But it does provide me peace of mind in the event that a severe blood sugar is looming.

Stacey Simms 13:05
You're coming to 8 years with type one, have you experienced burnout at all yet? You know, it's I think,

Robin Arzon 13:12
yes, I mean, there are certainly days where just like really more of this tightrope walk. So it's definitely exhausting. And we make to think like a pancreas requires a lot of mental energy. But I'll tell you something, I've discovered more than burnout, that every single day we have the choice to turn why me and to try me. And the self pity is poison. I think that self pity is poisonous and much more harmful than burnout. For me, I choose to constantly flip the script, constantly turn pain into power, I have no other way. And it's both being someone that lives with type diabetes, and also being an athlete, and also being a mom, and also being an executive and also being an author and also being an entrepreneur. And it's like, let's go.

Stacey Simms 13:56
I know we're gonna run a time. Two more questions, if I could, you mentioned your daughter things beep with diabetes. How was she doing with that? I mean, she's so tiny. But does she know what?

Robin Arzon 14:05
Oh, my goodness, you know, I mean, we're just learning and she's very curious about the gadgets and the beach and the stuff and I will explain to her, you know, in age appropriate ways of like, this is mommy's medicine, and this is what Bobby needs to do. And now I explained to her what a pancreas is, and you know, things that I definitely didn't learn at her age. But you know, I want her to know, I want her to be informed too. And I want her in order for her to be proud of me. She needs to be informed as to what I go through. And I want her to see me dealing with challenges and rising above it. The Diabetes community is incredibly supportive, and whether you know, the Gvoke Hypopen can be used for folks, age 2 and up. So that's a wide swath of our community and Gvoke.com is a great place for more information. That's where the total story is, including any side effects information and safety language.

Stacey Simms 14:51
And then the last question is just what are you looking forward to in 2022? You've already accomplished so much you listed all those things that keep you so busy.

Robin Arzon 14:58
I'm very excited. about the launch of my children's book, it's my first children's book strong mama. It is a love letter to my baby girl. And it really puts the focus on a caregivers self care. So let's remember that we have to prioritize our self care. It's not selfish, whether your parents or not take the time for yourself. Because yes, that burnout is real. And we have to go inward sometimes in order to give

Stacey Simms 15:21
outwardly but like hope when it comes out, you'll come back on and share.

Robin Arzon 15:24
Oh, that would be great. That would be great. Nice. Nice to see you today, Stacy.

Stacey Simms 15:28
Oh, my gosh, thank you so much, Robin, I appreciate your time. Have a great one.

You're listening to Diabetes Connections with Stacey Simms.
More information about Robin a full transcript and the links to Gvoke and to the video are all at the homepage at diabetes connections.com. I am going to follow up with her hopefully, she'll come back on in a couple of weeks to talk about her children's book and answer more of your questions.
I mentioned at the beginning of the show that Benny asked me to try something new. So let me just set kind of set the table about what's been going on here, especially if you're new to the show. So Benny was diagnosed in 2006. Right before he turned two, he is 17. Now, and so he's had diabetes for really just over 15 years. For the last two years, I've really tried to slide into doing less and less and less to the point where in October of 2020, I turned off all of my Dexcom alarms except for urgent, low. And after a big trip he took the summer he went to Israel for a month with a non diabetes camp after he did well with that. I said to him, Well, what do I do now? Right? What do you want from me? How can I help you? Am I here just for customer service? Right? When you want me you contact me, not the other way around? And he said that that's what he really wanted to do. Have I been 100% successful at that, of course not doing nag him here and there to bolus or if I see something wonky? Of course, is he doing? Well? Yeah, he's doing really well, except I'll be honest with you. He's not as diligent. He's not as on top of it. And he wouldn't mind me saying this, as he was when I was diligent and on top of you know, and as you're listening, if you're laughing, if you're an adult with type one, or if you're a parent of an older child, or young adult with type one, you have gone through this, I've gotten a lot of reassurances from my friends, the diabetes community that as long as he's not doing anything dangerous, and he certainly is far from that he's doing great that the way I would do it is not gonna happen anymore. It's up to him now, which is really, really, really hard.
So here's what the challenge came in. About a month ago, I pointed out to him that, you know, he was missing some boluses. And he wasn't paying attention to things as well, you know, we had like a, it was a moment where I said, can I talk to you about this? And he agreed, and we had a really good conversation like we do every once in a while. And he said, You know what, Mom, I'd like you to try to remember every time you eat to do something, and I said, Yeah, but after 15 years, like how can you not know how can you not do this? Right? I mean, every parent has said that or thought that right? So he said to me, okay, every time you eat anything, I want you to text me. I said, Sure. No problem. I always have my phone with me. That's gonna be easy. And you know, he rolled his eyes. And he said, we'll say,
so the first day, I text him every time I eat three meals, you know, a billion snacks, whatever I'm eating, I text him every time. The next day. I text him. I'm not even really thinking. I text him at dinner. He was at work. He texts back “Is this the first time you've eaten today?” with assorted emojis. And I went, Oh, my God. I did not text him for breakfast. I did not text him for lunch. I hadn't even thought about it. I completely forgot about our bet. And I said, Okay, not fair. That was just day two. It wasn't that I forgot to quote bolus while I was eating. I just forgot that we had agreed to do that.
He said, Okay, I'll give you another couple of days. Well, the next day, I remembered breakfast, I forgot lunch. So he wanted me to keep it up for two weeks, which was our original agreement, I felt that he had proved his point after a day and a half, really. But I kept it going. And I did better. But I really failed at it.
Was that a lesson with universal implications? Probably not. I bet you'd be a lot better at it than I was. I don't know why I couldn't remember. I don't know what I was thinking. But between the two of us, it was a fantastic lesson. And it was such a great way for me to see how even after all this time, you know how difficult this is how tough it is to be perfect. And you know, as you listen, maybe your lesson is, well, that means that you need to set more reminders. And be on him more. I mean, everybody, I guess would take this a different way. The lesson to me was: have a little bit more empathy, and have a lot more respect for the way he is doing it. Well, I mean, we're not talking about a kid who's ignoring his diabetes, and you don't like I don't talk about numbers, but we're talking about an A1C that's, you know, maybe a couple of tenths, maybe a half a point higher than it was last time. And we're already seeing numbers that I never thought we'd see when he was in the teenage years. If you'd asked me, you know, years ago, thank you control IQ. Thank you for a kid who is responsible.
So that's a long way of telling this story that I really got a lot out of so as you listen, if you're a parent, talk to your kid, maybe this is something you can do if you're an adult nodding your head saying yes, Stacy, we could have told you that's what would happen. You know, thank you for your patience. But I got a year and a half before Benny goes off to college. That's it. He is beginning his second semester of junior year. And I think most of these lessons, frankly, are for me. So boy, I hope I'm learning.
All right, we do you have a newscast this week, that is Wednesday, live at 430, on Facebook, and YouTube, and then live on Instagram at 4:45 different times, until these services decide to play nicely together. And I can do them all at once. But right now, Instagram will not let you that's why there are different times for that, but we turn it into an audio podcast that you can listen to on Fridays. And then going forward, we're back to our regular schedule with the long format interview shows every Tuesday.
I am hoping that we're gonna have a lot of technology to talk about this year. We do have some great episodes coming up with the folks at Tandem. We've got an update from Dexcom, as well as some interviews with newly approved products and products overseas that are going to be submitted for approval in the US this year. So a lot to work on a lot to come. I'm really excited about 2022 Not just for the show, but for what I really hope the community starts seeing when this logjam of COVID approvals or COVID, delays at the FDA starts loosening up and walking through so fingers crossed for that.
Thank you as always to my editor John Bukenas at audio editing solutions. Thanks so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days until then be kind to yourself.

Benny 21:29
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

Dec 21, 2021

We're taking a quick look back at 2021 and a longer look ahead to 2022 and beyond. Stacey is joined by DiabetesMine Managing Editor Mike Hoskins for a fun talk about technology, trends and even few rumors in the diabetes community.

As always, please remember this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. We’d also add that Mike and Stacey are well-educated about what they're talking here but this isn’t inside information. Don’t set your investments or decide what products to buy from this episode.

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Episode Transcription Coming Soon!

Dec 17, 2021
Our top stories in the news this week: Congressional report on insulin pricing, SGLT2 pulled from EU market, Insulin-producing cells found outside the pancreas, Sugarmate returns & Miss America with #T1D joins Smithsonian display.
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Join us LIVE every Wednesday at 4:30pm EST
Full episode transcription below:

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

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 – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast..
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In the News is brought to you by The World’s Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com.
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New Congressional report from Democrats on the House Committee on Oversight & Reform keeping the focus on insulin pricing. It says Medicare could have saved more than $16.7 billion on insulin if it were allowed to negotiate like other health programs. This final report is the culmination of an almost 3-year investigation. Documents from Eli Lilly, Novo Nordisk, and Sanofi indicate these firms "raised their prices in lockstep in order to maintain 'pricing parity'. One particularly damning quote – a Novo Nordisk pricing analyst remarked, '[M]aybe Sanofi will wait until tomorrow morning to announce their price increase...that's all I want for Christmas',"
https://www.medscape.com/viewarticle/964799
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Surprising move in Europe – they’ve pulled the SGLT-2 inhibitor Forxiga from the market for people with type 1. AstraZeneca said the decision isn’t about safety but didn’t explain further. There are already concerns about an increased risk of DKA from SGLT-2 inhibitors in people with type 1.. that’s why they aren’t approved in the US.. but many advocates say the benefits outweigh the risks. The UK Chief Executive of JDRF, said it is "appalling" that the drug has been withdrawn, as quote "many people with type 1 are finding it an effective and useful tool to help manage their glucose levels."
https://www.medscape.com/viewarticle/964844
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The FDA issues a warning to Medtronic over it’s diabetes headquarters. This is related to a July inspection that led to recalls of the MiniMed™ 600 series pump, and a remote controller device for MiniMed™ 508 and Paradigm™ pumps. Medtronic says they are implementing a range of corrective actions and process improvements related to the observations, and will continue reviewing these actions with the FDA.
https://www.kpvi.com/news/national_news/medtronic-diabetes-receives-fda-warning-letter/article_bf45a3c3-1759-5fff-b234-6a71cd874a98.html
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Here’s a new one. Israeli scientists have discovered that the human fetus makes insulin in its intestines before birth and say this means that adults may have a “backup” system that could be reactivated to treat diabetes. This is peer-reviewed research published in the journal Nature Medicine. These scientists say there’s a lot here they don’t understand and practical applications are a long way off but.. the hope is that some kind of medication could one day reactivate these cells in adults.
https://www.timesofisrael.com/israeli-scientists-say-humans-may-have-backup-insulin-system-diabetics-could-use/
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Good news Sugarmate fans! Late last week the app makers announced it would once again connect with Dexcom for US customers. They issued an apology and thanked users for their patience. Still working on re-connecting for those outside the US. This is all about changes to the Dexcom API, the way apps talk to each other.
https://help.sugarmate.io/en/articles/5790778-reconnecting-your-dexcom-data-source?fbclid=IwAR3FC616f4mGt4yAGUcEvLDaTVpDhC7aqQIxQPN7lk5ZBNJVxASIDzK57k8
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Dexcom expands it’s physical presence, opening a second large facility in Arizona. Big celebration this week with a ribbon cutting ceremony at the 500-thousand square foot facility and a job fair. In looking into this story, I found that earlier this year the other Dexcom center was used as an indoor drive-thru Covid vaccination site.. a partnership between Dexcom, the Arizona Health Department and Walgreens.
https://www.bizjournals.com/phoenix/news/2021/12/14/diabetes-device-maker-opens-another-mesa-facility.html
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Time Magazine’s Heroes of the Year are the scientists behind the COVID vaccines. While there are of course many people at work here, they highlighted four – including Dr. Drew Weissman who has lived with type 1 for more than 50 years. He and partners began working on mRNA science for vaccines in 1997, publishing a landmark paper in 2005. There’s a lot more to this story of course.. DiabetesMine ran a photo of Weissman almost a year ago, getting the vaccine and you can see his insulin pump on his belt.
https://time.com/heroes-of-the-year-2021-vaccine-scientists/?utm_source=twitter&utm_medium=social&utm_campaign=person-of-the-year&utm_term=_&linkId=144413683
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Miss America memorabilia moves to the Smithsonian, including items from Nicole Johnson, the first Miss America with type 1 diabetes. Johnson posted about this on social media saying she was donating her insulin pump, swimsuit and letters from children with diabetes that she received during her reign in 1999. The exhibit will mark 100 years of the competition. Other items include a hearing-aid-compatible microphone used by Heather Whitestone, the first deaf Miss America of 1995 and the first swimsuit worn in the pageant.
https://www.smithsonianmag.com/smithsonian-institution/miss-america-contest-is-forever-shaped-by-its-swimsuit-competition-180979125/?fbclid=IwAR0YAQt1Lo1X5hB1yce2Ixftk5Y3I6_ncLLCbNBy9H-nKttLtBaYgSXx_Is
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New York Times article today about model Lila Moss wearing her omnipod during a fashion show a few months ago. They included a few other runway models with type 1 and got some quotes from JDRF.. nothing too new here but worth mentioning. One tidbit.. it’s not uncommon, these models say, for pumps and CGMs to be airbrushed out if the client or they wish it to be – they’re keeping their tech on for the shoots.
https://www.nytimes.com/2021/12/15/style/lila-moss-hack-diabetes-runway.html
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Before I let you go, a reminder that the podcast this week is my favorite things! I had a great time with this episode.. it’s short and fun I think – and I talk about accessories, storage, toys and more. Listen wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.
Next week our predictions episode – DiabetesMine Managing Editor Mike Hoskins joins me as we talk about tech in the new year.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

 

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