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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: September, 2021
Sep 28, 2021

We have some big problems in the United States in terms of access to and affordability of insulin. But when you look around the world, there are still many other countries with bigger barriers for people with diabetes. This week, we're talking to a group trying to make a difference in some of the places that need it most.

As you'll hear, Marjorie's Fund was started to honor the memory of a woman in Uganda who died from type 1 diabetes at the age of 29. Dr. Jason Baker is an endocrinologist who lives with T1D. He explains why he was in Uganda and what happened to make him take the leap to start Marjorie's Fund. You'll also hear from Sandy Narayanan, co-founder who lives with type 2.

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

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Episode Transcription 

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week what happens in countries where the most basic diabetes technology - syringes insulin test strips - is incredibly scarce. Dr. Jason Baker, who lives with type one found out when he spent part of his endocrinology studies in Uganda,

 

Dr. Jason Baker  0:43

and I thought to myself, man, if I would have been diagnosed somewhere else than where I was diagnosed, would I be able to be where I am free of complications, having my life not hindered, but actually enhanced by diabetes?

 

Stacey Simms  0:58

Dr. Baker shares how that experience led him to start Marjorie's Fund, now called M Fund. He and his colleague Sandy Narayanan explained the goals of the group and how we can help.

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

Welcome to another week of the show. I am always so glad to have you here. Hi, I'm your host, Stacey Simms. And you know, we aim to educate and inspire about diabetes with a focus on people who use insulin. Well, for the last few years. I've had a lot of people tell me you have to talk to Dr. Jason Baker. I feel like it's just one of those names here over and over in the diabetes community. Dr. Baker is Assistant Professor of clinical medicine and attending endocrinologist at New York Presbyterian Weill Cornell medicine in New York, New York. He is the co founder of M Fund, the medical director and the board chair. Marjorie's fund, as you'll hear is named after a woman Dr. Baker met in Uganda. She was diagnosed as an adult and she only lived to age 29. During her short life, she was able to advocate and educate her death, it could have been prevented with better resources and she did inspire doctors and patients and many others to carry on this cause.

Dr. Baker is joined in this interview by Sandy Ryan on their board Treasurer program committee chair and she lives with type two diabetes. They have a big event coming up and I will link all of the information up at Diabetes connections.com so you can learn more if you would like to help and you've already heard me use interchangeably Marjorie's fund and M Fund. They are in the process of renaming to M Fund. Of course, the legacy of Marjorie is at the core of this organization.

So all of that coming up but first Diabetes Connections is brought to you by Gvoke Hypopen, I mean you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar and in the case of very low blood sugar, why we carry emergency glucagon, there's a new option called Gvoke Hypopen the first auto injector to treat very low blood sugar Gvoke Hypopen is premix and ready to go with no visible needle. In usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes- Connections comm and click on the Gvoke logo Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk.

Jason and Sandy, thank you so much for joining me. I'm really interested to learn more about M Fund and everything that you all are doing. Thanks for being here.

 

Dr. Jason Baker  3:33

Thanks for having us. We're excited to be part of the conversation.

 

Stacey Simms  3:36

Let me start with you, Jason, if I could just tell me a little bit about how M Fund came to be it's quite a story.

 

Dr. Jason Baker  3:43

Yeah, I absolutely love to because it really is a story. I think of all too many people who live with diabetes in this world of ours. And just as an anecdote, you know, I myself have type 1 diabetes and I was diagnosed as an adult I was 24 years young medical student actually, and it changed my life. But when I was diagnosed, I had everything I needed to do a good job with managing and never got any complications don't intend to knocking wood knocking side of my head here. It is a very difficult condition as we know that takes a lot of resources and and as soon after I was diagnosed I started to do some international work and had the opportunity to travel to Africa when I was actually a fellow in endocrinology, so a young trainee in endocrinology. While I was in Uganda, I met some people living with type 1 diabetes and was struck at all of the struggles that they had. And in subsequent travels, I met other people with diabetes and I thought to myself, man, if I would have been diagnosed somewhere else than where I was diagnosed, would I be able to be where I am free of applications, having my life not hindered, but actually enhanced by diabetes, really thriving with diabetes. So it really struck me What a discrepancy there was in access to care for people living with diabetes. And I really felt this huge drive and obligation to help change the narrative. For a lot of other folks who may not have been born in geographic areas or into areas with economic opportunity to get the resources they needed to thrive. On top of this, I was meeting a ton of folks who are doing work in the field of type 1 diabetes and helping kids. So there were a lot of organizations focusing on children living with diabetes, but I realized that you know, there was this rule about how old kids could be and still be part of those programs. And it entered in to my mind at the time like, well, what happens when adults are diagnosed with Type One Diabetes, or diabetes? in general? What happens when they grow up? Where do they get their resources? So these two main themes kind of emerged in my mind about what happens to adults living with diabetes, and what happens to them living in these resource poor areas, and what can I do, and a team that was built around this concept do to improve upon those lives. So the organization was born out of those ideas, basically, giving people of all ages an equal chance working to give them an equal chance to not just survive living with diabetes, but to thrive, to empower them to be able to have the tools they need to thrive? long winded way of answering questions.

 

Stacey Simms  6:44

I'm gonna ask you one more thing to make it even longer. Excellent. I like to talk me to what does it do? What does the fund do? Do you send money to other organizations? Do you go back to the countries you mentioned?

 

Dr. Jason Baker  6:57

Yeah, well, we do both. So we we have three main folks I are focuses of interest, if you will. So we've got an educational component where we focus on diabetes education for healthcare providers, and for patients, we have another component where we focus on access to health care. So we'll do things like running a clinic, helping people to be plugged into their local healthcare system to access care and the like. And then the third thing we do is we have economic empowerment projects, because we really have realized that the folks that were working to help oftentimes don't have an education to literally earn the money, they need to buy the resources locally for managing their diabetes. So we're really into economic empowerment work to give people the economic health, they need to thrive as well. You know, as part of this, we travel back and forth to country to site, do site visits, meet with partners. And unfortunately, COVID interrupted that a little bit this past year, but we're eager to get back boots on the ground.

 

Stacey Simms  8:02

Sandy, let me bring you on, and ask you, why are you part of eM Fund? What's your What's your story?

 

Sandy Narayanan  8:09

That's a good story. Good question. Actually, the story is, I grew up with a father who had diabetes, and was on intensive insulin therapy for pretty much most of the time that he had diagnosed, what had been diagnosed with diabetes. So he passed away when he was just 65. We think it was type two on insulin, it could have been type one, it could have been any other kind of diabetes. And this was an India where I grew up, and we noticed that he was able to access insulin, but there was no monitors, he would basically be on a stick once a week, or once in two weeks to find out how he was doing and to titrate insulin. And there were people you know, who were around us, there's obviously you know, as we know, there's a lot of poverty and, and there's a lot of diabetes in India. And even as I was growing up, I noticed that there were many other than my father, who had diabetes who didn't have the quote unquote, luxury, if you will, of even having insulin or even going out and getting tested once a week to see how they were doing with their glucose management. So I was always kind of interested in diabetes. And then I got diagnosed myself with type two diabetes about now almost 1314 years ago. And there I was checking my glucose at 10 times a day and I was able to do that and I was initially on insulin and initially thought that I myself might have the same type of diabetes that my dad did and that I would need to be on insulin forever. But I really was able to come off insulin within about 10 weeks or so and really within Monitoring and changing my diet and just my lifestyle habits. And so I really thought, oh my goodness, you know, how things have changed since my father's time. And what is happening in countries like India and anywhere else where the resources are not available that I have here when, you know, in America to be able to even manage type two diabetes with 10 strips a day, yeah, I could afford it. I had insurance. I actually, when Jason who was at the time, Dr. Baker to me, and who actually was the one who diagnosed me, he brought up the idea that he was going to do some create a nonprofit for people with type 1 diabetes, I immediately jumped out at I've been toying with the idea of doing something myself truly wanted to give back especially to communities in need, in underserved areas, population, women, I'm very, very interested in ensuring that women have parity in treatment, and in access to care and supplies, and especially with type 1 diabetes, the need for intensive insulin therapy, and the need for monitoring just was my became my passion. And I joined forces with Jason up until then, actually, at the time that I that Jason was starting March respond, I was in corporate human resources, and it created my own business and had been working on what zation effectiveness, etc. So it became sort of a natural complement to Jason's medical and healthcare vision.

 

Stacey Simms  11:33

Jason, the last couple of years, as I've done this podcast now since 2015. And you know, price access all that has been an issue, even in the United States, right, where we, some people have very, very good private health insurance. Some people have public health insurance that covers things. But I feel like the conversation of last couple of years has really shown issues here in the United States where one of the four people are rationing, insulin and that sort of thing. Absolutely. I I know it's difficult, but I have to ask you, how are you all doing? This is not a new effort for you. All right. You've been doing this for almost 10 years? Have you seen things kind of change in the conversation around this? Because so much more of the conversation in this country is about affordability and access?

 

Right back to Jason answering that question. But first, Diabetes Connections is brought to you by Dario. Health. And over the years, I find we manage diabetes better when we're thinking less, but all the stuff of diabetes tasks. That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you. All the test strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones weekly insights into your trends, with suggestions on how to succeed, get the diabetes management plan that works with you and for you, Darrius published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash diabetes dash connections.

Now back to Jason answering my question about access to insulin and high pricing here in the US.

 

Dr. Jason Baker  13:17

Absolutely, I mean, I think you know, it's interesting because it's, it is different, right? So like, if you're thinking about what's happening in some of the countries who don't have national healthcare systems, for example, or who really have a truly disrupted continuous supply chain of insulin, and sometimes not reliably good quality insulin, certainly that don't have test strips, or any of the technologies we have here, you're dealing with kind of almost a warzone situation where you are bringing in opportunity, and in many cases in which there's very limited as certainly for the people who are living in poverty, it has certainly been a conversation with us and all of our partners, as we have done our work largely overseas to help to fill in these gaps of care, to say, Well, what the heck are we doing in our own backyard? And why is it not working? Well here in the United States to you know, what are the problems here in the US? And it's very interesting, Stacey, you asked this because internally, we've been asking ourselves, what more can we do in the US? Well, and we're working on some, yeah, we're working on some projects on that end, but in my opinion, right now, in the US on the US side, we have challenges with number one, using resources that actually we might have access to correctly. And in many cases, those resources may not be used as well because of perhaps underlying depression, anxiety, diabetes, burnout. All of those things that plague all of us living with diabetes at some point or another, unfortunately, it really hinders the ability to do good self care and self management. But then on the opposite end, or not on the opposite, but but complimentary, you definitely have people who don't have access, their co pays are too high, they're in this gray zone in between not having Medicaid seeking care through the emergency room, maybe they're undocumented, lots of reasons that might lead to either rationing or simply not having the supplies. I've had seniors, for example, living with Type One Diabetes, coming into my office crying to me about being in the doughnut hole and not being able to afford their insulin, and being completely overwhelmed by the complexity of some of the insulin assistance programs here that might be intermittently available to people. So there is definitely an issue, definitely an issue in the US with resources being inadequate, or sometimes resources also not being used correctly. But again, you kind of take that particular situation that absolutely exists here, and you pour some kerosene on it, and then you find the situation that we oftentimes deal with that our sites overseas. Does. Does that make sense?

 

Stacey Simms  16:26

Yeah, and I don't want you to misunderstand that. I don't think you did. But you know, I'm certainly not saying that we have to put Americans first and full of solve this before we can help anybody else. I mean, the problems are vast, and they are different. As you've said, Can you give us a little bit of insight into how M Fund has helped?

 

Dr. Jason Baker  16:45

Absolutely. And I can take a first stab at this. And Sandy would love to hear you chime in too. But one of the things that we are extremely proud about is the center that we have opened and have been running for the past five years in a remote region of Uganda kasay, which is bordering the Congo a very, very remote region, which we had become a partner of a few years ago and have subsequently helped to renovate a physical building, which is now housing a diabetes organization in which we are now running a twice weekly medical clinic, along with an Eye Clinic, none of which existed before and which is really serving about 350. folks living in the region with diabetes, who otherwise were unable to get care, due to transportation issues due to monetary issues are due to, again, hospitals being too far from where they live. So we are so proud of this center. And we're also so proud because it's created a system of peer education by which it is our partners are a group of diabetes patients on the ground who, who came together to survive, partner with us and are really helping their compatriots to learn how to better manage their diabetes with pushing educational components, helping with access to healthcare and taking the lead in various economic empowerment projects through this centers. So you know, we have folks who are making art and selling it abroad and locally in the monies come back and help them to have the resources to buy their there and take care of their diabetes and buy their supplies, we have a piece of land that we grow cash crops on there, and the resources go back to the group to help care for themselves with diabetes related costs. Lots of layers of this. And we are very proud of this center that we want to replicate in other locations. So that is kind of where our biggest champion work is right now. I'm helping this group in a remote area of Uganda. And by the way, they're all adults, they're all older, and unable to access other existing programs of aid. So we really feel that this is serving an acute need in that area. And we're we're just really, really proud of it. And again, it always breaks my heart a little bit though, Stacey because when we're asked this question, I think, well, it's great. We're doing these things and other locations doing similar work, but it always strikes me that we need to be doing more in to do so we have to continue to grow as an organization and we have to continue to get more person power to the table in order to do greater outreach to other folks because the more we dig on this in, the more we people we help the more it's uncovered, that there are more people to help and in other ways than we are currently doing. So that's the tricky thing. I think about foreign aid work when it comes to diabetes. It's such a complex and unruly beast, that the more work you do in helping folks, the more you realize you need to do to kind of take it to the next level, you can't go in and just cure something, right? It's like a socio economic project of unknown duration. Right? And we are really excited about the progress we've made so far and helping this group mean, because as a fan, did

 

Stacey Simms  20:29

you want to jump in?

 

Sandy Narayanan  20:30

Yeah, I want to say also, as Jason mentioned, the primary work is in Uganda right now, the biggest number of beneficiaries are there. We also have a very thriving program in Rwanda, originally, the Rwanda Diabetes Association, had a program where they had a group of patients with type 1 diabetes, come to a center, and spend six months there, and actually learn a trade and get diabetes, self education, and self management education. And they had the opportunity to spend time with other patients with type one. So they could have a lot of back and forth and peer support. And we really, in some ways, wanted to lift and shift that model, which we thought was great. But of course, to get other places where you can have a group of people come and spend six months, I mean, six months diabetes camp, if you think about it, would be quite the challenge. So we really, though, took the concept of making sure that that the patients had some form of vocational training or some ability to be economically empowered when they went out back into their communities to live with, with diabetes, and to take away a little bit of the stigma as well, that they might feel, because they see that there are others who have the same condition. Sometimes they're isolated, and they believe it's something that has been sort of there, they're smitten by some curse. Oh, no, yes, way, they can be with other people and get that sense of togetherness and say, Okay, this is something manageable. And this is something I can do. And there is a support system available outside of even the my peers, because they can see that there are organizations helping. So we have helped nearly 120 students graduate from that center. And then when that center moved, we would we have to take a little bit of a break. But we're again sponsoring some people back into they've got a new center now at a different location. And they're starting to get people coming back in learning trades. And we've also established a conduit for people to get tailoring training, for instance. And we set up a tailoring cooperative, where we have people making beautiful backpacks and things like that which have sold on the US market very well through your thrift shop, which is our partner. You know, that is another piece of some of the work we do. Where again, those same three aspects of our work of healthcare, access, health, diabetes, education, and economic empowerment. It's really about motivating and empowering our beneficiaries to thrive

 

Stacey Simms  23:23

in just listening to you talk. It's amazing to me where we are, and people through this podcast, we're so fortunate, we are very technologically advanced, even for the United States. You know, many people who listen to this show are very much do it yourself. They have hybrid closed loops or closed loops that they've made themselves, you know, they have basically the best technology. And to know that there are still people 100 years after the discovery of insulin that are, you know, I know, we have issues here, we've talked about them, but that, you know, think about this as a curse or think about this as a literal curse. Not just you know, Darren, I hate diabetes, it's really kind of hard to listen to. And it's hard to think about it that way. When week after week, I'm saying, well, when is the Dexcom g seven coming out? Why can't it connect to my watch? Right? So Jason and Sandy, what do you need from us?

 

Dr. Jason Baker  24:14

Well, we need support. First of all, we as you as we had mentioned earlier, we want to do more. But we ourselves as an organization, you know, we need more resources, we need person power, we also need financial help. So anybody who's interested in any of our programs, wants to hear more about them, wants to participate in them reach out to us, if you want to support them, we need your support because as an organization, Stacey we work 90% of our funds are private donations. And it is because of all those supporters that we can actually do the work that we do, and COVID has only made our work more expensive and more complicated. So all the more assistance we can get on the financial side. I mean, I hate to always talk money, but to be frank, we need it. You know, we, for example, have a gala coming up on October 12. Unfortunately, it will be virtual. But fortunately given that it's virtual, any of you can attend. So watch for our email, sign up for our emails, attend our gala, hear more about our work, support us. It is because of you that all of us can come together and help our brothers and sisters overseas or even right here in the us who don't have as much as we do.

 

Stacey Simms  25:35

I'm also curious, I know that you're not here to talk about yourself. But you know, you mentioned you were diagnosed as a third year medical student, I think you've lived with type one for close to 20 years now. Yeah, bless

 

Dr. Jason Baker  25:47

your heart. I thought you're gonna say 30. I was in school when I was 10. Yes, exactly.

 

Stacey Simms  25:53

Weren't we all. But as you look back, I'm curious what that was like. I mean, you were learning about medicine, you were learning, I assume how to be a doctor. And then you had to learn how to be a person with type 1 diabetes. What was that like?

 

Dr. Jason Baker  26:05

Well, it's looking back it's actually just slightly embarrassing because truth be told, I was a terrible self diagnostician. You know, medical students are famous for saying they have everything except what they actually have, or making up things. I explained away, Paul a year, you know, having to urinate all the time losing weight to working hard, and having excessive drinking, because of stress, you know, above water. So it's funny. And finally, finally, when I was diagnosed, I had to, you know, I thought, diabetes, me diabetes, no way. And it wasn't in my family, as is the case for most folks. But quickly thereafter, a sitting there in the hospital, being the patient after having taken care of so many patients, I had this experience of being vulnerable and being scared, and for the first time in my young life, having a sense of mortality. And I thought, Man, this really sucks. And then before I left the hospital, I thought, well, what am I going to do with it, it's a sink or swim situation, Baker, so sink or swim, and I said, You know what, I'm going to swim. So I decided that I was going to apply my own personal experience. And I was going to go into endocrinology. So in work in the field of diabetes, and so you know, honestly, I haven't looked back I, I like to think that my self management personal experience in sharing that with patients might set home some cases hopefully help them. But it was scary. It was eye opening to what it's like, being a patient as a medical provider, and definitely changed the trajectory of my career, no doubt about it.

 

Stacey Simms  27:38

Have your fears from that time come true, or you know how I hate to always this this, like big reflection with type one type question. But I am curious, you know, looking back, what would you tell yourself, oh,

 

Dr. Jason Baker  27:51

I would tell myself, be easy on yourself and learn from your mistakes, instead of beating yourself up for when you make a mistake. You know, when you have a high, don't stress over it corrected, but learn so that next time it doesn't happen, be open about diabetes at all times, don't hide it, don't spend any energy in having any shame related to diabetes, but make it part of you, and let it empower you and strengthen you, and use your energies for fighting it yourself, but also helping others to be better educated about it. So they too, don't hide it. I think that those would be the two biggest things that I would go back and tell my young self to remember to hold true. And with that, I think that everybody will do fine and use what they have wisely.

 

Stacey Simms  28:43

Sandy, let me ask you, you know, you're, you're a certified diabetes educator, you're a registered dietician. What do you bring now to your family, to your personal life, when it comes to diabetes

 

Sandy Narayanan  28:52

was the same in some ways, as Jason said, you know, to be able to talk about it to say, you know, when you have diabetes, you don't, and in my case, type two diabetes, that you can manage it with just eating right? Not just, it's not that simple. And I think I do understand that it's not so simple, just because, oh, I'm not insulin dependent. You know, I bet Oh, I just managed my diet and exercise and I can reverse my diabetes, I do understand the challenges. And I bring that in my patient interactions as well. At the same time, I can speak to the fact that you are watching your diet, watching your your eating, making sure that you stay active. These are all important and I think especially to my family and my friends and the people in India and again, women, I certainly bring that message that there is so much available in terms of education and knowledge and alternatives to eating just a carbohydrate rich diet for Since I bring a lot of that in to my discussions with family, many family members with diabetes, my father was very educated I, you know, at the same time, you know, there's, there's only so much you can fight with resources that you have. And so I do bring that as well that you know, a lot of people I know, when I was first diagnosed, you know, I go back to that concept of stigma, there's some shame attached, especially if you have type two, sometimes, you know, it's I eat a lot, and you are sedentary. And so you get type two, right? It's something you bring up on yourself. And I am able to speak to the fact that that's not true, and that we have so many things that are out of our hands. But there are some things that we can do, and what can we do to be able to try for diabetes, and I'm, in terms of, you know, similar to Jason, I went through, I went through a certain period when I wouldn't talk about having diabetes at all. You know, it's really through seeing what people are going through when on our trips abroad, or listening to family and friends, listening to my patients that I realized that it's really important to talk about it, own it, acknowledge it, and seek out as much information as possible to how you can manage.

 

Stacey Simms  31:17

Alright, Did I miss anything before I start wrapping us up here?

 

Dr. Jason Baker  31:20

No other than to congratulate yourself for having an awesome podcast, not because of your guests, necessarily, but putting together an amazing forum for us to discuss things like this. So thank you for having us here and letting us tell you the story of M Fund and our stories. We appreciate it.

 

Stacey Simms  31:37

Jason at the end. Thank you so much for being here.

 

Unknown Speaker  31:40

Thank you so much, Stacy. You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  31:52

Lots more information about Marjorie's funder, M Fund, and the gala and auction they have coming up in October, it's October 12. It's virtual. If I didn't mention that earlier. You can buy tickets and join live, you can donate money, there are there are a lot of ways to help as you can imagine. And there's always more information at Diabetes connections.com, including the transcription that I put out for every episode. So if you know somebody who would prefer to read, please send it their way. And in just a moment, I'm gonna tell you something a little bit embarrassing, and a mixup I have had for a long time about Marjories’ fund.

But first Diabetes Connections is brought to you by Dexcom. And you know, when we first started with Dexcom, and it was back in 2013, the share and follow apps were not an option. They just hadn't come up with that technology yet. So trust me when I say I know using shared follow makes a big difference. I think it is really important though to talk to the person you're following or sharing with and get comfortable with how you want everyone to use the system. Even if you're following your young child. These are great conversations to have, you know things like at what numbers will you text, how long will you wait to call that sort of thing. That way the whole system gives everyone real peace of mind. I'll tell you what I do love absolutely about the Dexcom share. And that's helping Benny with any issues using the data from the whole day and night. And not just one moment. Internet connectivity is required to access separate Dexcom follow up to learn more, go to Diabetes connections.com and click on the Dexcom logo.

Alright, so you know, I'm never afraid to tell you when I make a mistake and even when it's embarrassing one. So I told you at the beginning of the show that Dr. Jason Baker is one of those names that I'd heard for years. And you know, people had told me to get in touch with him and have him on the show. But every time I heard about Dr. Baker and Marjorie's fund, I thought this was about the dog. Marjorie, do you know what I'm talking about? Does anybody out there understand my confusion. So this is actually kind of a sad story. But it led to a very happy ending. Marjorie was one of the dogs that was crucial inventing and bests experiments which led to the discovery of insulin. They removed these dogs pancreases and then tried to figure out how to keep them alive. And Marjorie, I believe was the first one. She was kept alive for about 70 days, and got quite famous actually, but obviously quite different from what Marjorie's fund is all about. So yeah, a little embarrassing to share would have been a very simple Google search all this time. But I'm really glad that I did get to talk to Jason and to Sandy and to do to finally learn a lot more about the work that they are doing and how we can help.

Okay, before I let you go, just a reminder to join the Facebook group if you haven't done so already. If you're on Facebook, it is Diabetes Connections, the group if you'd like to sign up for our email list, that is always easy to do just go to Diabetes connections.com there's a pop up with our latest promotion right now. It's still how to get your gear to stick and you can sign up for that or you can just scroll down to the bottom if you don't want the promotion, you know that's currently running. You can just Scroll down to the bottom and there's a little portion where you can join the newsletter list. If you're not on Facebook, I would urge you to do that. Both of those together really how I get the word out about announcements and fun stuff, surveys, that sort of thing. thank you 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 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

Sep 24, 2021
It's "In the News..." the only diabetes newscast! Top stories this week: Medtronic moves on implantable insulin pump, study: doctors - but not parents - are missing symptoms of T1D in kids, Dexcom "shelf-life extension" explained, news about whether COVID is causing a surge of diabetes in children and what happened with the Apple watch BG monitoring news?
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Join us each Wednesday at 4:30pm EDT!

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Transcription Below: 

 

Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule.
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In the News is brought to you by Real Good Foods! Find their Entrée Bowls and all of their great products in your local grocery store, Target or Costco.
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Our top story.. What helps people with diabetes gain better glucose control? Expansion of Medicaid. As part of the 2010 Affordable Care Act or Obamacare, U.S. states were given the option of expanding Medicaid coverage to more people as a means of reducing the number of people without health insurance. As of today, only 12 states have not taken advantage.
A new study finds that blood pressure and glucose control measures have improved in states that have. The researchers behind the study say it may take a while to show up but that, over the longer run, expanding Medicaid eligibility may improve key chronic disease health outcomes for low-income, marginalized populations.
https://www.medicalnewstoday.com/articles/medicaid-expansion-improves-hypertension-and-diabetes-control
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Medtronic takes over the intellectual property rights to an implanted infusion pump. This is technology developed by the Alfred E Mann foundation. 25 years ago, there was a lot of buzz about implantable insulin pumps, but it hasn’t panned out. The tech is just what it sounds like – a small insulin pump that goes under the skin and holds enough insulin for a few months. Medtronic had one on the market but pulled it almost 15 years ago. One of the drawbacks is that you have to go to the doctor every time you need to fil the pump and there’s other upkeep – but the upside is said to be better control and a lot less thinking about diabetes. Interesting to follow this one.
https://www.fiercebiotech.com/medtech/medtronic-buys-implanted-infusion-pump-tech-to-develop-new-type-1-diabetes-treatment
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A story familiar to way too many parents.. symptoms of type 1 diabetes are not always immediately recognized by primary care providers. This was a study of about 240 kids under 18.. published in Pediatric Diabetes
These researchers found that 39% of parents had suspicions of new-onset diabetes before they brought their child in for care. Of those, the majority of parents first brought their child to the doctor with symptoms.. and then ended up bringing the same child to the emergency room within the next four weeks.
This was a Swedish study, but research shows especially during COVID, diagnosis during DKA is increasing in children in many countries, showing the greater need for better education all around.
https://www.usnews.com/news/health-news/articles/2021-09-21/doctors-often-miss-signs-of-type-1-diabetes-in-kids

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We’ve heard a lot during this pandemic about an increase in new diabetes diagnoses. A new report from Mississippi, where providers are reporting a -quote – massive increase. One pediatric endocrinologist is says they’ve seen up to a 40% increase this year, compared to 2019. That’s both type 1 and type 2.
So what’s going on? Lots of theories including indirect effects of quarantines, closures, and unemployment. It might sound odd to some, but severe emotional stress is thought to be a trigger for diabetes, especially in type 1.
Additional studies show that COVID targets the insulin making pancreatic beta cells. A full understanding may be some time away, but these endos say the surge is real.
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Interesting listener question about Dexom sensors.. thanks for sending in this photo – seems that some customers are getting these G6 inserters – brand new in the original packaging – with a label that says “this product meets shelf life extension requirements.” I reached out to Dexcom and they told me: the stickers are legit and there are updated expirations dates. I’ve asked for a bit more information as to why they’d do something like this and if it means that all G6 sensors could have extended shelf life.
They responded that they aren’t going through all the sensors, so only the ones labeled can be considered extended.. no answer as to why now or to which part of the sensor or inserter actually expires. I’ll follow up next time we talk for the podcast, but if you get one of these labeled sensors – the company says it’s legit and safe.

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More to come, But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.
Real Good Foods. Where the mission is Be Real Good
They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—the new Entrée bowls are great. They have a chicken burrito, a cauliflower mash and braised beef bowl.. the lemon chicken I’ve told you about and more! They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com.
Back to the news…
Big news for a great children’s book. JDRF has put Shia Learns About Insulin into the Bag of Hope. We had the author on the show last year... I’ll link that episode up so you can hear the whole story. Shaina (SHAY-ahn-uh) Hatchell is a Registered Nurse, Certified Diabetes Care and Education Specialist, and Nurse Manager at the Howard University Diabetes Treatment Center. The story was inspired by her brother, who lives with T1D.
The JDRF Bag of Hope is given to newly diagnosed children age 11 and under. Frankly, it’s pretty hard to get new products in there – it’s nice to see some more diverse representation.
https://www.jdrf.org/press-releases/jdrf-announces-the-addition-of-shia-learns-about-insulin-book-into-the-bag-of-hope/
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Last bit of news is note worthy for what didn’t happen. Big apple news conference this month with absolutely no mention of blood glucose monitoring. You’ll recall there was a ton of speculation about this all year long.. with many tech websites breathlessly reporting this was going to be happen. Look – I do think it will.. but there is really no hard evidence that anyone has come close to cracking this. Non invasive remotely accurate glucose monitoring is really hard. And, as I’ve said all along, we’ll know it’s for real when we see some clinical trials.
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Please join me wherever you get podcasts for our next episode - The episode out right now is with American Idol contestant turned actor Kevin Covais – he’s in a new Netflix show out this month and he spent some time this summer mentoring teens. Fun guy with great behind the scenes Idol stories, too.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

Sep 21, 2021

Kevin Covais was one of the youngest contestants on American Idol; he was just 16 when he made his debut during season 5. He’ll share some behind the scenes stories including managing low blood sugar during a live performance. Diagnosed with T1D at age 11, Kevin has been working steadily as an actor. We’ll talk about working in Hollywood with diabetes – and what that's been like during COVID, more about American Idol, and how Kevin found himself mentoring other kids with type 1.
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

-----

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

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Stacey Simms 0:00
Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Announcer 0:20
This is Diabetes Connections with Stacey Simms.

Stacey Simms 0:26
This week, actor Kevin Covais was one of the youngest contestants on American Idol back in season five, he'll share some behind the scenes stories, including managing low blood sugar during a live performance.

Kevin Covais 0:38
And I'm singing and I just like, I can't wait for this thing to be over. I can't wait to stop singing and get the critiques from the judges that I'm not even gonna really listen to you because I got to get off the stage and I got to get some juice or I gotta get some tablets. I gotta take care of this.

Stacey Simms 0:49
He was fine. And since Idol , Kevin has been working steadily as an actor. We'll talk about working in Hollywood with diabetes and during COVID more about American Idol, and how Kevin found himself mentoring other kids with type one. He has advice for parents too.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show, always is so glad to have you here. Hi, I'm your host Stacey Simms. We aim to educate and inspire about diabetes with a focus on people who use insulin. And my guest this week is Kevin Covais, diagnosed with type one just as he turned 11. Kevin is best known for American Idol as you heard in the tease there and the Disney Channel show Good Luck Charlie, where he played the character Victor. He is a steadily working actor with roles in Transformers and this is us, the rookie, NCIS Los Angeles and more. I put some pictures of Kevin in the Diabetes Connections Facebook groups, you can kind of see him on set. And he is appearing in the new Netflix series on the verge, which is out this month.
I thought it would be fun to just play a little clip of Season Five of American Idol where Kevin appeared and this was back in 2006. As I said he was one of the very youngest contestants. So here's a little bit of him from back then.
(Kevin sings)
https://www.youtube.com/watch?v=dc5ec3te75I

Stacey Simms 2:44
used to watch idol all the time. And as I confessed to Kevin, it has been a while. But what a big show, right? And you'll hear Kevin during the interview mentioned Elliott Yamin who was also on season five and also lives with type one. I got to meet Elliot a couple of years ago at a touched by type one conference he is still performing writing music. He's now a dad, I'll put a link to Elliot stuff in the show notes as well.
That of course will have tons of information about Kevin, but I just thought that was really interesting because to me, I don't know it seems like yesterday but of course 2006 was the year that my son was diagnosed, Benny was diagnosed right before he turned two. He is now almost 17 which is I mean, we've lived with diabetes. Now I've been part of this community for 15 years in just a couple of weeks. So 2006 kind of was a long time ago and kind of seems like yesterday to me.
Alright, Kevin's interview coming up in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen and our endo always told us that if you use insulin you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice but a very low blood sugar can be very frightening which is why I'm so glad there's a different option for emergency glucagon it is Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle. You pull off the red cap push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon.com slash risk.
Kevin, welcome to the show. I'm really glad to talk to you. Thanks for making some time for me.

Kevin Covais 4:26
Stacey. Thank you for having me. I'm so excited to find we've been talking about this for a while I'm so I'm so happy to finally join the program. It's great.

Stacey Simms 4:33
Awesome. Yeah, it's great that we finally connected Gosh, so much to talk about. We connected everyone We see each other every year add friends for life. Yeah. And I was so happy we were able to do that this year. We'll kind of see what happens going ahead. But before we get into all of that, do you mind if we just kind of take a step back and look back? I mean you haven't been on the show before and I'd love to kind of revisit the early days of Kevin

Kevin Covais 4:59
Spacey. I would be disappointed if we didn't do that. So let's, let's dive in. Let's do it. Yes, please.

Stacey Simms 5:04
As I was asking that I was thinking about American Idol but I should probably go back further. You were diagnosed when you were you were a kid. You were not even 11 years old yet, right? Yeah, it

Kevin Covais 5:13
was just prior to my 11th birthday symptoms leading up. Yeah, my birthday is at the end of May. And I just remember that entire month of May so vividly. You know, obviously, you think back to childhood and, you know, memories here memories there. But that month just stands out in my mind so vividly. Symptoms throughout the month, parents wandering out what's going on with Kev? what's what's happening, you know, maybe an infection this that bring me into the doctor, several days prior to my 11th birthday to get the diagnosis of type 1 diabetes. Yeah.

Stacey Simms 5:41
Did you spend your birthday in the hospital?

Kevin Covais 5:43
I think it was. So it was it was several days after my birthday. So yeah, it was the entire month leading up to the birthday. And then it was, yeah, right. At the start of June, I was putting so this was several days after my 11th birthday that I was in the hospital. And just you know, you hear the doctor tell you and your kid and I, you know, I immediately I broke down and cried. I didn't know, I didn't know what I was dealing with. I you know, you hear the word diabetes and you know, your mind escapes, you starts running around all these different things. And then he you know, the doctor, you know, kindly explained to me, now this is something you're going to be able to manage your life. It's obviously going to be a great deal of work. But this is something you live with and something you manage. And then from there, I learned everything over the course of the next week and being in the hospital and getting treated. Yeah, it was. It was a month like no other though. Yeah, that's for sure. Yeah.

Stacey Simms 6:27
So your kid, you're diagnosed at a time when frankly, it's the as I recall that time that early 2000s. It's the time right before everything really started changing. Absolutely. As I look at I mean, Ben, he was diagnosed in 2006. They were like, we've got this amazing thing called Lantus. That's just been approved for kids. Yeah, you know, and now everything seems so different with the technology. What was the first kind of technology or routine that you were on? Gosh, you

Kevin Covais 6:54
got me thinking back to the pre Lantus days of time? Yeah, it's it's wild. For me. Taking the injections, taking the daily injections, I will go ahead and say I'm not currently on the pump, that I am one of these those rare rare people that uh, that takes daily injections. I have a CGM. But that's, that's my preferred way of doing it have been doing it that way for years. But yeah, starting out being diagnosed taking human and human log each and every day. Yeah. And those pre Lantus days. And, you know, they think back to those syringes before you have the pens and the newer technology and the things that make it so easy now, so, so accessible, and thinking back to a time before, you know, we had some of those advancements, it was definitely interesting at the start for those first couple of years.

Stacey Simms 7:35
Well, is that the kind of and I say technology to encompass whatever you're using shots? Oh, of course. Yeah. So when you're talking humulin, you have a log, did you have to kind of eat on a set schedule? Or were you okay to kind of inject when you want it to eat,

Kevin Covais 7:51
you know, that really came with adulthood, that sort of injecting when I wanted to eat and the accessibility I remember, as a kid, it was, it was the preference of my doctors to have that set routine. I remember going in and you have a regimented schedule of three meals, several snacks, a snack at an after school snack at roughly 3pm. And, and one prior to bed 9pm at night. And yeah, that was for a while. It's obviously insulin matching. Exactly what you're what you're ingesting exactly what you're eating and set times. It was all very regimented. For me those first couple years of my life. Yeah. Something. I bet. I bet it's a trip to think back on it really is. Yeah,

Stacey Simms 8:30
it must be I mean, I just think, you know, it's there's no easy age to be diagnosed with diabetes. But 11 you're just starting out that like, tiptoeing into independence. Yes. Middle School. Do you remember? Did your parents kind of give you a long rope? Were they very protective? I don't want to be too personal.

Kevin Covais 8:48
Please, please. They were unbelievable. I'm so blessed to have the mother and the father that I do. And the support system that I do, I think they handled it differently. I think, with my mother, I think not that there was more trust, I think, was maybe a little longer rope and trusting me to do the things I think my father was, you know, very concerned at times, but you know, rightfully concerned about, you know, what I was taking and this and that. So there were I think there were several different schools of parenting going on. But together, they complemented each other so well. And it was I just knew that they were always there for me during those frustrating moments, those highs, those lows, quite literally, obviously, where it's just they were there All the while, but just like an amazing support system site. I think they went about it slightly differently. But we're, you know, managed to still be on the same page because, you know, nobody handles You know, one set situation quite the same. So, I was just incredibly fortunate. We just got informed, it's like we figured out what it was and there was a moment of kind of bowing our heads and being frustrated being sad. And then we were like, Alright, what do we do about this and got in the hospital and took care of and met up with all the doctors and got assigned the endocrinologist and and took it from there. Yeah,

Stacey Simms 9:53
your parents must have given you a long rope because five years later, you auditioned for American Idol right when you're 16

Kevin Covais 9:59
I was a baby I mean, I'm still a baby. I'm just an older baby. I'm still probably just as immature. But now I'm in my 30s so I don't really get away with as much. I I was 16 years old SJC when I did the show, I can't believe I did it at all. And I can't believe I did it when I was when I didn't know any more. I was just a child. Yeah. It's so

Stacey Simms 10:17
funny. So okay, so you're my son's age.

Kevin Covais 10:23
And your son's a child. I'm sure he's way more mature than I was.

Stacey Simms 10:28
But, you know, you did let him just go. You know, he took an international trip for a month but he was with you. But he was with a bunch of people who, you know, we're we felt very safe with of course, what was the deal with American Idol because you didn't just go to one city, right? I mean, audition different cities take us kind of through what happened.

Kevin Covais 10:45
It was just the journey of a lifetime at 16. I audition in New York. I'm from from Levittown, New York, Long Island, New York, and I audition up in Boston, I turned 16. And as I tell the story, my mom and I would watch idol from the Kelly Clarkson days. I ultimately was on season five. But you know, Kelly Clarkson wins the show, season one, my mom and I, it's must see TV. We tune in every week to watch the show. And my father was never a big fan. And I was a singer, around the same time that I was diagnosed with diabetes at the age of 11. That's kind of when I joined the chorus and developed a love for singing and acting in the school plays and whatnot. And he'd walked through the room and we'd be watching idol. And I would tell him, I said, you know, one day I'm going to do this show. And he's like, yeah, okay, we'll see. And I turned 16. And again, just to echo how incredibly supportive my parents have always been, they've always been by my side, I turned 16. I go up to Boston to audition for the show. When there were no tri state area auditions in the Greater New York area. They take me up to Boston, they take me up to Gillette Stadium where the New England Patriots play, they're having massive auditions. 15 tents set up on a field, a judge at each tent and forward a time that bringing us down and they say Sing, sing, sing, sing, you sing a little bit of a song, they cut you off whenever they feel like you either make it or they send you to the exits, we see a herd of people go into the exits. And I was one of the lucky few that day who they said you know what, we're gonna give you another audition, we'll come back and see the executive producers, so on and so forth all the way up to the main judges in the city of Boston, I see the original three of Simon cow, Paula Abdul, Randy Jackson. And eventually I make my way out to Hollywood. I get past that round, and made it to Hollywood. It was my first time ever on the west coast. I get to go and I'm one of maybe 180 people auditioning out in Hollywood to try to get on those live shows where ultimately I landed and Gosh, got to somehow got to the top 12 my seats I don't even know I don't even it was honestly Stacy, it was all blur. I don't even know how I did it. I don't know. I mean, I remember it. But it was just such a roller coaster and such an emotional ride in such an exciting ride my lights? Yeah.

Stacey Simms 12:39
When I'm researching to talk to you, you know, going through the American Idol season five and kind of looking at what was written around that time. There's no mention of you having diabetes?

Kevin Covais 12:50
No, no, you hiding it.

Stacey Simms 12:57
Right back to Kevin finishing that thought. But first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips, do you need some direction or encouragement going forward with your diabetes management, with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my dario.com forward slash diabetes dash connections. Now back to Kevin talking about why he didn't share his type one with the American Idol audience.

Kevin Covais 13:46
Absolutely not hiding it. This is how little I just knew about I just wasn't aware of anything. I was so green to the experience that like now as an actor of 10 plus years as a mainly transition to acting at this point, which I'm sure we'll get to a bit in a little bit. I didn't think about it from a perspective of Oh, wow, what a stage to raise awareness for this thing. I was on the show. I made it to the top 12. And one of my best friends from the show is Elliot Yamin, fellow type one, and you know, great guy, great personality and just just a heck of a voice. Oh my god, the guy can sing the doors off the place. He's unbelievable. And we auditioned in Boston together. I was so nervous until my final few weeks performing live on the show. I just think I went in and I would do the interviews and I would do this and I would do that. And it wouldn't even occur to me like man, you should really bring this up. I wasn't hiding it. I wasn't ashamed. I think for me, it was just such a normal part of my life that I'd been accustomed to for five years. And I was like, Oh, yeah, well, I'm you know, I'm no different than anyone else. I'm just dealing with my type 1 diabetes, you know, all the while. And it's it's a regret not from a sense because again, I wasn't hiding it. It's a regret because I realized how big that platform was and Oh man, I should have said something. And it was and it wasn't until after the fact that I was like oh wow, there's like a lot of opportunity here and when I you know start to do very As events for the jdrf are really dive into work with the Diabetes Research Institute several years thereafter. It wasn't until that point, when I kind of got older. I was like, Man, this is an incredible opportunity to raise awareness. And, you know, use your platform. And I wish I could go back and tell 16 year old Kevin that I really wish I could.

Stacey Simms 15:16
Well, I wasn't even thinking of it in terms of advocacy, which is a terrific point that you make, but I was thinking about it as your 16. And, you know, to say, Well, I need extra help, or I need you to know that. Although you weren't beeping at the time, you probably didn't have a CGM. No, not yet. Right. You might not just you know, and I think and I can totally understand that, because that's how my son is, you know, he'll tell people to be safe, you know, spending the night and we're not there. And he'll say, Here's to this and that, but he's not gonna say, hey, by the way, just as dropping into the conversation, yeah. I don't think a lot of 16 year olds who are let's just say it like that, I think. And you've already kind of mentioned it, it just seems like it was such a normal part of who you were. I think that's very commendable. I think that's great.

Kevin Covais 16:01
Thanks. Yeah, I'd like to think so as well. I'll tell you, every staff member on idol, the producer, the up to the producers, up to the big time people behind the show, they knew I had type one. I always made it a point to you know, school teachers, obviously, you're telling them okay, hey, look, if I need to go to the nurse, this is why I'm not. I'm not trying to get out of taking this exam. It's because I have a legitimate low right now. So the people in my life I was telling, it never occurred to me when the cameras started rolling to bring it up, because it just didn't occur to me. I was like, Oh, yeah, no, I'm telling the people that are directly affected in my life about this. It didn't, it didn't even dawn on me to inform the audience about

Stacey Simms 16:36
it. Did you have any issues on Idol with diabetes? And I did,

Kevin Covais 16:40
yeah. There's a story that stands out. I don't mean to laugh. It's just some hilarious stories. When we were laughing. We This is how we do it. This is how we deal sometimes, you know, you know, you know better than anyone as to why it's, it wasn't an issue, up until the live shows. Really, I think, for me, it was always Okay, we're testing constantly, we're making sure we're correcting prior to getting up for big performances, or whatever I got to perform during Hollywood week, I'm making sure I'm good to go in preparation for those performances. It wasn't until the third live show there were three weeks of semi finals on the show. And I get up there on the third week, and I'm waiting in the wings to be the next one up and I I know where my blood sugar is, you know, without the CGM. I'm one of the lucky ones who can, you know, 21 years of this thing I can tell where I am. If I'm running high in the two hundreds, I feel lousy, and I know it. I know where I'm at. If I'm low, and I have the shakes, and you know, you feel a little disoriented. I know that too. And I could feel myself dropping and dropping quickly. But I'm up on stage and it's live television. So I go up and I perform I perform. Don McLean's stories of Vincent starry, Starry Night old ballad that one of my favorites, Josh Groban read it, and in more recent years, and I'm singing, and I just like, I can't wait for this thing to be over. I can't wait to stop singing and get the critiques from the judges that I'm not even gonna really listen to because I got to get off the stage and I got to get some juice or I gotta get some tablets. I gotta take care of this. It was the most surreal thing to be experiencing that in that moment. I got through it. And the performance wasn't terrible. I think it was, I think was one of my better ones. So I was on for five weeks. And I I put it up in the maybe on the top two or three of them. And yeah, but that did happen on live television, which was just the most surreal thing. Yeah.

Stacey Simms 18:18
Wow. When you got off the stage Did you like eat everything? Oh, yeah.

Kevin Covais 18:22
I went to town state. Oh, yeah. Are you kidding me? I was like, Yeah, let's go. I was just, it was bizarre. It was just a bizarre, but it was just a wild, wild thing to experience. And that's kind of telling for anyone who deals with this is that you can prepare to the best of your abilities. And that you know, that unexpected lower high could still come about, you just have to do your best but there's no there was no shame. I didn't feel any shame after that. I know. Look, we're all human. And this is this is a normal part of the day in and day out experience. It's just so unique that to be in the position that I was in to have experienced that at that moment was very unique. Yeah, yeah, that's

Stacey Simms 18:57
interesting, too. That I forgot. Elliot. Yeah, I mean, was the same season.

Kevin Covais 19:00
Oh, yeah. Yeah, yeah. Oh, man. He was I was rooting for him after I eventually got bounced and got kicked out. You know, after I got eliminated from the show. I was I couldn't get kicked off now. I was a good kid. After I got eliminated from the show. I was I was rooting for Elliot anyway not I mean, obviously the bond we shared as as he was a fellow type one and we you know, related and became fast friends over that, but I just thought he had the best voice that of anyone that sees and I thought his voice was you know, another league but it was a it was a heck of a year and a heck of a ride for it really was

Stacey Simms 19:30
Do you still forgive me? I don't know if it's even on the air. Do you still watch

Kevin Covais 19:33
idol please? It is not really Oh, no, it's been going on a while sometimes it's like sometimes you gotta know when to let go. I like emotionally said goodbye to the show. I think it was about five or six years ago now when when Fox had its last airing of the show. So I kind of had my emotional goodbye with the show. Then I had a bunch of friends over to my place and we watched it and we were you know we're they were laughing about stuff. Remember in my time on the show years ago, we had a we had a grand time and then you Goes via Idol s off the air and then ABC is picking it up. Because you know, why not? Why not pick it up? And they've had some successes with the ABC run and some some very talented people on the show but I think there's just there's so many options now so many things to watch. You got the voice you got to America's Got Talent, things of that nature. It's tough. It's tough to keep up with all of them now stuck to keep up. Yeah.

Stacey Simms 20:20
So right. So after idol, you change from being a singer to acting? What What happened? Like, what were some of your first jobs. I know you were at the Disney Channel, and you've been guest starring spots. So if you could tell me, like when you started?

Kevin Covais 20:32
Yeah, I saw I finish idol. And I'm really honest about these things. I thought, going into the Idol experience as everyone does. I want to be a recording artist, I want to make records and I want to do this. And my love for music. And my love for singing is never escaped. It's really I'm just being honest, it's more of a hobby. At this point. It's more of something for me. And if I record something, it's more for me or potentially to work, collaborate with friends or right with fellow musician, friends. But I got into the acting I remember I got done with idol and I got management back, I found representation back home in New York, there was a real interest, I think people really found me to be a bit of a character on the show. And in a good way, not a bad way, of course. And that led to auditions. And I started going out in my first movie was a real silly kind of raunchy comedy, I wouldn't recommend anyone listening to this podcast, watch it, it was a movie called college. It was with a Nickelodeon star by the name of Drake Bell and various other funny people. And, you know, really funny people in the cast. And we had a blast making it. And this was my first taste of a film. And I came to know that Deb Hagen, our director on that project, she was at home with her family reading the script of this movie, she'd just been assigned as the director. And she's watching idol with her family and I'm on the show. And she's reading the script. And there's this you know, kind of nerdy character named Morris super this kid with, you know, part of gold sweet kid, but you know, just kind of reserved and whatnot. She's reading the character, and she's looking at me on the TV, and she's like, Man, this kid would be, I want this kid to play this role. And I never knew this and takes a while to make a movie. And about a year later, I within that year, I get done with Idol I go back home, I'm doing my senior year of high school now, because I did Idol as a junior in high school. I'm back in Levittown, New York, I'm back at Island trees, high school over there. And, and I'm doing self tape auditions, I get a manager at home who starts sending me out for acting, saying there'd be quite a bit of interest if I were to pursue this. And I put myself down for this movie college and put a self tape down and I got the roll, I got the roll, which offers self tape, which is like, You're so lucky to get that it's a rarity. And I was very fortunate. And I had a fun time making that one. And then that led to a bunch of other opportunities got to work with Lindsay Lohan on a on a television movie called labor pains, which was a blast, a really stacked comedic cast. And that one, you know, that's silly movie, but a lot of fun. And then since then, the big one was good luck, Charlie, for me got to be on the Disney Channel and work on eight episodes of good luck, Charlie, in the early 2010s. And, and then from there, just a slew of fun guest stars. And I've just I love it. I love every minute of it. I don't know how it all came about. I think for me, I always love to act adjust as much as I love to sing. But I never I wasn't savvy enough at the time of doing idol at 16. Again, I was so green, I didn't even think like oh, you can use this idol platform to maybe swing a few meetings or this or that and try to try to get your way into acting. I don't even think like that. If again, if it was today, if I was doing that in my 20s or if I was doing that today in my early 30s. Like obviously I would have had that mindset but you know, I didn't know I didn't know anything like that. So but just so fortunate that it came about and I love it. I love being on set. I love playing these characters escaping into these fun people that are nothing like me. It's fun.

Stacey Simms 23:35
Yeah. And you've been you know, you continually work I mean, yeah, it's as you said their guest starring roles and you know, but they seem so fun. You were This is us. 68 whiskey, you know, the Yeah, I think the last thing I saw was NCIS LA or Los Angeles. I saw you did like a theme during COVID. How is production been? Have you been able to do anything? That's

Kevin Covais 23:57
You know what? That's a great question. My last two roles, which as you previously mentioned it NCIS Los Angeles I got to do a again small role but part but a scene with with great actors and Chris O'Donnell and LL Cool J the leads of the show. And that was just so trippy because you know, you grew up watching lol and then you get to do a scene with them. I like that. It's like I've done this for over 10 years and you still get in those situations and you play it cool, but it's like I'm working with frickin Oh, cool. J This is not. But that was interesting. I'll tell you as it pertains to COVID they were coming off a hiatus to show and this was I believe this was their first episode of production back since COVID. I don't think I'm making that up. We go and we film at the Paramount lot you know the famous Paramount live in Los Angeles and and they took so many precautions. It's unbelievable. When you have a small you know, co star role such as myself, they give you a tiny little trailer whatnot. And everything's placed outside the trailer, your wardrobe, your sides like there. Nobody's coming into your trailer. It was a whole new world. Obviously you're wearing a mask the entirety of the time. You're filming just a little funny story, my character is wearing like some sort of alligator costume. He's like a sign spinner on the corner of the street or whatever, who they take in for interrogation at the NCIS headquarters in LA. And so they take me in and I'm still wearing this thing. And for the purpose of the scene, I have the first line and I'm wearing a mask during rehearsal we get in and obviously, you're not shaking hands with anyone, you're just meeting you're there for a day. It's a quick day, and I'm wearing a mask in this like weird out, you know, this weird, like lizard costume or whatnot. And then when they they start rolling, they're like, Okay, everybody take your masks off. Kevin, you can take the mask off. I'm like, okay, so I, I don't know what's going on. I'm just following their lead. I take the mask off. And I'm like, Where do I put this thing? I don't pocket somewhere in a lizard costume. I just like kind of stick it under my button, keep going with the scene. And then they call action and I run a scene with a local j was nuts. It was crazy. I was like, but it's a whole new world, you know. So they take the precautions, but then they call to action and you're back in a fictitious world that apparently doesn't have COVID-19 in it. And it was just bizarre. I was fortunate I had a small role A few weeks later on a show that is yet to be released a show with Elizabeth Shue called on the verge which I believe is upcoming on Netflix. And I didn't get to shoot a scene with her unfortunately, because she's amazing. But I had a really fun scene as a whole as like a funny, wholefoods worker, and I got to shoot on on that set. And again, they're taking all the precautions, you know, no contact and you're getting COVID tested every other day, because they need assurances that everyone on that sets safe. Everyone on that said this was pre vaccination. This was at the end of last year when I worked at magic, so nobody been vaccinated. Yep, you have to have assurances that nobody is has tested positive for covid. Otherwise, you got to shut the whole thing down. It was wild. But you know, it's a whole new world out there. And we got to be we got to be safe. And we got to be cautious, especially those of us with pre existing conditions, like type one. Yeah.

Stacey Simms 26:47
All right. So we're gonna list in the show notes. We're gonna put your IMDb so people can figure out that they've already seen you a bunch of times. Yeah. You know, like, my husband. And this is? Well, it's not really embarrassing, but my husband is a big Transformers fan. Like all the Transformers movie. So I know you've been in those. So now I got to go back and like freeze frame and find you.

Kevin Covais 27:07
Yeah, I just did one of the transformers. I had a funny, memorable scene with I think memorable with Mark Wahlberg and he would have been the fourth one. So it was I can't even keep track of it. He would know. I don't know. It was called Transformers Age of Extinction. Oh, yeah. The

Stacey Simms 27:22
one with the dinosaur. Yeah, there's

Kevin Covais 27:24
been five total, I believe. Yes, there's dinosaurs. Because Why not? Because anything goes in the transformers. You notice out? Yeah. And I think Shiloh buff did the first three. And then Mark Wahlberg took over as the lead for the next couple. And I was in the fourth one. And yeah, that was nuts. I had, it was that was such a surreal experience to

Stacey Simms 27:42
get working on a big, big, big budget. That was the hugest gi crazy. I mean, it must have been wild.

Kevin Covais 27:48
That was the hugest thing getting to shoot a scene with Mark Wahlberg and being directed by the very, very animated Michael Bay who was was cool to me, but it was just like it was I felt like pinch. I was like, how am I here right now? How did I get here? Like working on this with like, huge names like This is nuts. Yeah, heck of a time. It was a lot of fun. That's awesome.

Stacey Simms 28:07
Well, I first met you ever saw you it friends for life? Yeah. You were a special guest one year. I don't think we met the first year that I saw you speak. And then you know, you've you've basically Kevin, they kind of they really adopted you. You were on staff. They did. Tell me a little bit about how you found the folks at friends for life, which I'm sure as you're listening, you're familiar with. They talk about it all the time. But the largest family diabetes conference in probably in the world at this point.

Kevin Covais 28:33
Amazing. And the amazing work that they do over children with diabetes. Yeah, I was like you said I was kind of a stray dog who they like led into the house. They're like, Alright, well, let's domesticate this guy. And maybe he can become a part of this. I'm so blessed. One of my, you know, dearest friends, is Tom Kalia from the Diabetes Research Institute diabetes dad, as he's known. And Tom is one of the sweetest most generous guys I ever met. And I did American Idol, not to take it back to Idol . But I did idol and he reached out to my father because I was still a kid at the time. And he was a fellow long Islander and said, You know, I take part in this conference, and they do amazing work. And I would love to bring Kevin down. I had the summer free. I didn't make the American Idol tour. So I had this summer for and, and he asked to if I would come down to perform at the banquet for the 2006 friends for life conference in Orlando, Florida. And I was very excited. But I didn't know what I was getting into. I didn't know what this conference was. I didn't know that such an amazing organization existed. So I go down and I sing You Raise Me Up which was the Joshua again to bring up Josh Groban. The song that I sang on idol audition with and I sing it and it was just amazing. I had such an incredible time. And I learned more about this, what this conference was and learn of the support system that people had. And I think I was just so naive. I didn't realize that something like this even existed. And it just opened up my eyes. It opened up my eyes to how many people care about people in this world that I knew, you know, to an extent you know, around home in New York, you know, when I met these People when I met Jeff Hitchcock, when I met Laura, and all these amazing Lord bility, and all these amazing people at the conference, I was instantly just felt like family, I would go back several years thereafter, I think, in 2009, and then again, maybe around 2012 2013 as a special guest. And I kept going back as a special guest. And it was fun, because initially, I was there as kind of a guest who was promoting Idol and then, and then a younger generation of the kids that would go, I'd get to be a special guest and talk about good luck, Charlie on the Disney Channel. And that was a great fun, but then I would go and I would take part in in the conference a little bit. And then I would just kind of find myself walking around and saying hi to people and popping into the, you know, the exhibition room and popping into sports Central and playing basketball, the kids and I was like, I want to do more here, I want to do more. I got in touch with Laura. And they ended up asking me the next year like we've had just a special guest, would you want to come back and be a staff member here? And I was like, absolutely. Like I just wanted to, I wanted a bigger role. And they were so gracious as to offer me one. And now I'm just like part of the gang, which is always more fun for me anyway, because I never feel important. I never feel special. Like it's just like, I'm just one of the gang. I'm just like you. I'm just like this kid who has it. I'm just like this, you know, it's unbelievable getting to go there. Every year, they asked me to be on the team staff. And I think this past summer, yeah, was my fourth, fourth year on the team staff and I just want to go back every year, every year, they'll have me I want to go back out.

Stacey Simms 31:15
It is amazing when you don't have that community connection, and then you find it, we were kind of by ourselves. I live near Charlotte, but I don't live in Charlotte. And it seems like everybody I knew with type one with kids with type one lived further away from me. And then in 2010, children with diabetes brought a conference to Charlotte, amazing. They used to have these regional focus on technology conferences, and I went, and that was where I realized, oh my gosh, there's all these other people. There's this community, and it really inspired me to get more connected. And now I'm so lucky, we have people not, you know, you hate to have more people diagnosed, but we have four people in my area, we have, you know, more connections. So I hear you, but working with the teams, as you said, Yes, I think that's a pretty hard group. What do you do? How do you kind of get through them or talk to them?

Kevin Covais 32:01
It can be it can be I love it. Personally, I think I'd be more nervous to work with the younger kids, just in terms of not just holding their attention or whatnot, I think back to being 16. And I think back to the time I did I don't it's such a vulnerable time in your life. I think that more than anything else is that teenagers might act out or whatnot. But it's just stemming from insecurities or feelings of vulnerability, but a vulnerability about certain things in their life. And it's like, you just kind of have to, you know, give them a pass for that and try to break through the best you can. I mean, that's what I do. I you know, I never grew up a camp counselor. I never did any of that. So when I go to this thing, I look to friends of mine who were in the team group. Now, some of my best friends now who are on the team staff with me that I've met at the conference throughout the years. And I watched them do and I'm like trying to take notes because some of them are really good. And I'm like, yeah, it's tough. But it's tough to break through sometimes I think, yeah.

Stacey Simms 32:50
I'd be curious to as a parent of a team, I don't know, one parent of a kid with type one of a teenager with type one who says, Oh, my kid is perfect. Right? They're doing such a great job. I'm so happy with all of their marriage course. You know. And I, I'm wondering if there's any advice that you have as being somebody who is closer to being 16 than I am? Certainly, and who has worked with these kids, you know, what can we as parents do to support them?

Kevin Covais 33:15
That's an incredible question. I think I was naive, going into all this to see not that I didn't have struggles, but to have a support system at home like I did, where I think my parents, they were always aware of what's going on in my life. But I think it's such a give and take where obviously, my father, my mother spend 24 hours a day worrying about me as a kid with my diabetes, but not letting it show all the time and giving your child the space to sort of operate and trusting them in a way take off the training wheels and trust them to make their own decisions. Obviously, if if they need you, you're there. But also give them space, but don't smother them. I guess I it's a tough road. You know, I'm not a parent. So I'm not one to really comment on it. I can only approach it from that former teen perspective with my parents was I think my parents always did an amazing job on idol as well. I saw stage parents on idol I saw, you know, parents who were like, oh, you're gonna sing this song you're gonna do that. My folks always said to me, you know, Kevin, we're here for you. We love you. If you need help with something, let us know. But this is your thing. Obviously, you can't maybe take such a lacks approach in a certain way with diabetes, but it's informing your child to the best of your abilities always being present, always being there, but also letting them breathe and make their own decisions. I think if you can find that balance, it's really important because you see kids who don't necessarily have that are unique kids and I was naive. I thought everyone was like me who had and I thought everyone was like, you know had their ups and their downs and but good days and bad. But sometimes it's a rough road. And I I'd open my eyes to that just like going to the conference and just like going around and meeting people who have it. It's Yeah, it's not easy though. That's for sure.

Stacey Simms 34:47
Before I let you go, Kevin, your type 1 diabetes if I've got my math right, is about to turn 21. Oh, yeah.

Kevin Covais 34:54
Yeah, it's about Yeah. I could go out and go to the bars. type one. Yeah, I won't. But

Stacey Simms 35:02
I'm certainly not going to ask you to, you know, to sum everything up and tell us what you've learned or you know, anything like that. But I am curious, you know, you now as I said, you use a CGM, you use it, you still have injections, you use multiple daily injections, but it's different insulin. You know, things have come a long way you found the community to support you. Anything you would tell your 11 year old self, about my guts done, you know what you've been through,

Kevin Covais 35:26
I'd say Congrats. I mean, it's been a wild ride. And like, I haven't done things perfectly, and nobody's perfect. I think you got to give yourself a break. I think I've spent a lot of times kind of hard on myself from like a career perspective, as a singer, as an actor. And especially with my type one, it's easy to be hard on yourself, it's easy to, I think we go through these like ups and downs with this with this thing that we live with every day of our lives. And I can recall, like low points of like a really bad low or, you know, episodes that we all sort of experienced with this thing from time to time. I recall, like the immediate thing you feel is ashamed, ashamed that you allowed it to get to that point, I think if I could tell my younger self something, it's like, don't be ashamed. This is a part of the ride. Some days are amazing, some day stink, it's just a fact. No one's gonna be perfect. 19 you know, 100% of the time, it's just not it's not possible. So I think I would tell my younger self, I would say congratulations on achieving some of the stuff you've done, but also like, where to go, just, you know, get getting through it. And getting through this grind, you know? Yeah, I do know that. You know what, you know. So well. Yeah. Yeah.

Stacey Simms 36:28
I know it as a parent, which is different story. But that's fabulous. too.

Kevin Covais 36:32
Huge way to know it. Yeah. Well, Kevin, thank you so much. But it just thank you for having me. Yeah. Oh, it's

Stacey Simms 36:37
been wonderful to talk to you. I hope you'll come back. Keep us posted. Let us look for you. I will Yeah. And hopefully time will go fast. And we'll see you next summer friends for life.

Kevin Covais 36:47
That'd be amazing. Thank you so much for having me on. I really appreciate it. You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 37:01
More information about Kevin and links to what he's doing now. And links to some performances from idol back at season five at Diabetes connections.com. Every episode from 2020 on has a transcription with it as well. I'm trying to go back and fill in the blanks on the previous episodes, but boy, there are a lot of them. So I'm doing the best I can. But you can always find the information that you need. Hopefully, for each episode, they're at Diabetes connections.com and pop in the Facebook group. If you have any particular questions for me, you can always reach me at Stacey at Diabetes connections.com
and Diabetes Connections is brought to you by Dexcom. And I was watching only murders in the building the other night. Are you watching this show? It's on Hulu. So not everybody gets that. But it's such a fun and interesting comedy. It's not quite as funny and silly as I thought it was gonna be. And that's not a bad thing with Steve Martin and Martin Short and Selena Gomez. And the reason I started watching it no surprise is because they have a podcast and some of the podcasting stuff is very silly. But it's fine. I love it. It's not really too far fetched. Let's just put it that way. And it's just a good show. But I got way off the subject. We were watching this I was watching by myself actually, when I got a Dexcom alert, and Benny was upstairs. He was playing video games or doing whatever he's doing upstairs. And you know, I was just thinking about how we had blood sugar checks on a timer, we had a schedule. I'm sure a lot of you did this too. Before CGM. We would check doing the finger stick the same time every day at home and at school. And whenever extra we needed to. It's amazing to think about how much our diabetes management has changed with share and follow. I mean, it didn't stop the show to get up and check him. I knew what was going on, I could decide whether to text him or if I needed to go upstairs and help them out using the share and follow apps have helped us talk less about diabetes, which I never thought what happened with a teenager, and he loves that part to trust me. That's what's so great about the Dexcom system. I think for the caregiver, the spouse, the friend, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow, separate follow up required, learn more, go to Diabetes connections.com and click on the Dexcom logo.
Quick look ahead and a bit of a change in the schedule. I was set to go like many of you to the children with diabetes conference happening in White Plains, New York, the weekend of October 9, but they have moved that to a virtual conference. And I totally understand you know, you've got lots of kids uncertain situation with delta. So that will be in November. Now it is a virtual event. I will put information in the show notes. You can find out more about that we did virtual with them. Gosh, really all of 2020 of course, and it's a lot of fun. I think they do a great job. And one of the cool things they figured out early at friends for life and children with diabetes. You know children's diabetes is the organization friends for life is the event. They figured out how to help people socialize outside of the speeches and the reports and the talking which are all great. The presentations, I think are very valuable. But for me, the socializing is a huge part of why I enjoy these things. conferences, and they have these little virtual hallways where parents can drop in kids can drop in teenagers, young adults, that kind of thing. So worth checking out just for that. I'm disappointed, obviously, that we're not in person. But I'm still going to New York because this conference is 15 minutes from where my sister lives. And I haven't seen her in ages. So I'm going to go see her and hang out. And hopefully, Melissa, if you're listening, and I'm sure you're not, we're going to all the places where we ate in high school that weekend, so be prepared. We're going to Maria's pizza, we're going to diner, we're gonna make a list. So we grew up not too far from where she lives now. So that should be a lot of fun
Later in the month, I'm going to be in Scottsdale, Arizona for she podcasts, which is a terrific female podcasting conference, as you would imagine, I'm really excited about that. And look, we'll just have to wait and see how these things go. Because certainly, events are touching go at this point, diabetes events, people are much more cautious and rightfully so. So we'll wait and see. But hey, that doesn't mean that we can't hang out. We can socialize. My Local Group is doing stuff online. I'm happy to come and speak to your group, virtually. I've still got my book to clinic program. I am working on Book Two. I am so excited. So still a lot going on. But man, I know I can't wait to read. We're gonna get back to normal. I don't know. But I'd like to get back to something else. Something we're socialized more. We hug more with each other more. Hang in there. Oh, my goodness.
Thank you to my editor John Bukenas from auto editing solutions. Thank you so much for listening. I've got in the news every Wednesday live on Facebook, and then we turn that into an audio podcast episode every Friday. So please come back and join me for that. I'm Stacey Simms. I'll see you in a couple of days until then be kind to yourself.
Benny:
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Sep 17, 2021

It's In the News... the top diabetes stories of the past seven days! This week, what did lockdown mean for BG trends, Provention Bio keeps fighting for Teplizumab, the FTC shuts down diabetes schlockmeisters and if you're still using the Dexcom G5 - you need to hear this...

Join Stacey live on Facebook each Wednesday at 4:30pm EDT to watch live.

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Episode transcription and links below

Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule.

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In the News is brought to you by Real Good Foods! Find their Entrée Bowls and all of their great products in your local grocery store, Target or Costco.

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Our top story.. What did COVID lockdown mean for blood sugar trends? A new study says when they had to stay at home, people with type 1 significantly improved while the opposite happened for those with type 2.

You should know these studies all come from European countries with pretty strict lockdowns and they’re an aggregate – a look at a bunch of previously conducted studies.

With type 1, time in range improved significantly in 83% of the studies looked at here.. with type 2, almost half of the studies showed a clear decrease in blood sugar control, with higher A1Cs.

So what happened? There’s a lot of speculation but these researchers suggest less exercise and more snacking and more stress is to blame for the type 2 numbers..  although in my opinion the same could be said for all people with diabetes. They also suppose that the lockdown gave parents more time to look after kids with type 1 and gave young adults a more predictable routine.

I hope another study is done on this in the US where, frankly – access to insulin & health care providers may have become more of an issue during the pandemic

https://www.news-medical.net/news/20210913/COVID-19-lockdown-linked-to-improved-glycemic-control-in-type-1-diabetes.aspx

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Bit of an update - Provention Bio moving forward to answer the FDA’s questions and hopefully resubmit. This is for Teplizumab the first drug shown to prevent type 1 diabetes for – so far- up to three years.. although the FDA turned it down in July.

Provention says they continue to collect data and are moving to set up what’s called a Formal Type A meeting to submit that new information.

The company’s CEO says they believe they’re making significant progress to address the observations cited by the FDA and continue to work with urgency.

 

https://finance.yahoo.com/news/provention-bio-provides-potential-timing-113000253.html?soc_src=social-sh&soc_trk=tw&tsrc=twtr

 

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Bunch of schlock-meisters got called out last week by the US FDA and FTC – that’s the Federal Trade Commission. 10 companies got warning letters alleging they were selling illegal dietary supplements to cure or prevent diabetes. Regulators wrote the products cited in the warning letters are considered unapproved new drugs – they include things like turmeric, bitter melon, ginkgo biloba and more.. The report cites the increasing cost of insulin and other diabetes medications as a reason why people are turning to alternatives, even if they aren’t proven.. Please.. be careful out there.

https://www.naturalproductsinsider.com/supplements/regulators-target-diabetes-supplements-recent-warnings-about-claims

 

Quick additional FTC note – they held a virtual open meeting today. Two people from the diabetes community spoke about rising insulin prices. If you’d like to learn more I’ll link up the information.

https://www.ftc.gov/news-events/press-releases/2021/09/ftc-announces-tentative-agenda-september-15-open-commission

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We don’t talk a lot about shots – multiple daily injections – but here’s some good news about the basics. New study shows rotating sites and using smaller needles really do help. You’ve likely heard of LY-po-hy-PER-tro-fee.. it’s when lumps of fat or scar tissue form under your skin. These Belgian researchers did a six month study where they provided smaller pen needles and did a lot of education, including an online platform where they taught proper injection techniques, including not re-using needles. They reduced what they called unexplained high blood glucose significantly and glucose variability decreased as well. A1Cs stayed about the same.

https://onlinelibrary.wiley.com/doi/10.1111/dme.14672

XX

No surprise but still disappointing –  insurance is what’s dictating whether young children are more likely to use a CGM regularly. This was published in Diabetes Technology & Therapeutics.

Those on public or government insurance often face more obstacles.

This was a study of children ages 1-6 years, within two months of diagnosis.

82-percent used a CGM at least once during the study period.. but they divided everyone into 4 groups – always used CGM, stable use, inconsistent use or never used.

Families with private insurance were more likely to be in the always group or the stable group than those with public insurance. And..

The “always” group had an A1C that was 1.3% lower than the “never” group

https://www.healio.com/news/endocrinology/20210907/private-insurance-determines-cgm-use-by-young-children-with-type-1-diabetes

XX

More to come, including a Dexcom G5 update! But first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.

Real Good Foods. Where the mission is Be Real Good

They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients—the new Entrée bowls are great. They have a chicken burrito, a cauliflower mash and braised beef bowl.. the lemon chicken I’ve told you about and more! They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com.

Back to the news…

Heads up if you’re still – somehow – using the Dexcom G5. More than a year ago, Dexcom stopped selling the G5 and G4.. but – and thanks to the listeners who brought this to my attention – the G5 app is now sending out a notification.. On October 4th the Dexcom G5 app will no longer be available. As they’ve shared with us on the podcast many times, they’ve been transitioning everyone over to the G6 and will soon move on to the G7. No timeline on that btw I know you’re going to ask. But as far as we know, it hasn’t been submitted to the FDA and Dexcom has said it will go for European approval first.

--

And finally don’t forget to send me your Dear Dr. Banting audio! What would you say to the man credited with the discovery of insulin? All the details and how to send it to me is in the show notes.

--

Please join me wherever you get podcasts for our next episode - The episode out right now is all about the new Walmart Insulin.. will it save you money?

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

 

Sep 14, 2021

The term “Walmart Insulin” has always referred to cheap, older formulations. But now an agreement with Novo Nordisk means Walmart is selling own branded version of Novolog. It's the very same insulin, with a much lower cash price.

What does this mean for us as customers and for insulin pricing overall? Stacey speaks to Michael Burke, Walmart's Director of Brand Pharmacy Merchandising. They talk about who can get Relion Novolog, how much it costs, what your endo needs to know and how insurers are reacting.

www.getinsulin.org

LA Times article Stacey mentions

More info about Relion Insulin

Dear Dr. Banting (we need your voice!)

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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Episode transcription below 

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premix auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

This is Diabetes Connections with Stacey Simms.

This week, the term Walmart insulin has always referred to cheap, older formulations until this summer, a new agreement with Novo Nordisk means Walmart is selling its own branded version of Novolog.

 

Michael Burke  0:38

real sense of pride for us at Walmart to hear the great feedback. Our pharmacists and pharmacy teams are very excited about the product and how they can help support patients.

 

Stacey Simms  0:50

That's Michael Burke, Director of brand pharmacy merchandising for Walmart. We'll talk about who couldn't get this, how much it costs. Why now and what's next.

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

Welcome to another week of the show. I am your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed right before he turned two back in 2006. And my husband lives with type two diabetes. I don't have diabetes, but I spent my career in broadcasting and that is how you get the podcast

earlier this summer. As many of you probably remember, Walmart announced its new agreement with Novo Nordisk it is selling the same insulin that they make under the Walmart brand. So it's called ReliOn Novolog. And it's sold at Walmart and at Sam's clubs. This is not the older $25 so called Walmart insulin that includes older versions such as regular and NPH, which can be used safely if you know what you're doing very rarely used in pumps, and very rarely prescribed as a matter of routine. They're not the standard of care for modern day diabetes. But people do certainly use what many of you refer to as Walmart insulin, they still do use regular and NPH. But the vast majority of people who probably listen to this podcast and are regularly seeing an endocrinologist and have been diagnosed, let's say within the last 30 years are probably using novolog, humalog, And the the newer, you know, faster acting insulins. So because Walmart is selling novolog, we might have to change what we mean when we say Walmart, insulin.

And now that the dust has settled a bit, I thought it would be a good idea to find out how it's going and what it really means for people who use insulin. Unfortunately, I don't think it's changed the marketplace a lot. What it did prove, at least to me is that the retail price of insulin with or without insurance is as arbitrary, as most of us suspected. I mean, pardon my cynicism here. I do appreciate the folks from Walmart coming on to talk about this. And I appreciate that they're doing something I'm sure this new pricing will help some it is $73 though for a vial when the estimated cost of producing that vial is maybe four to $6. So it is still quite high. And that is the cash price. By the way with insurance as you'll hear it is likely a lot lower. So going in, please know and most of you already know this bottom line, ask your doctor, Ask your pharmacist, make sure you are getting the insulin that costs the least for you according to whatever plan you have.

There are so many hoops to jump through to ensure this if you don't have great insurance, you may want to go to get insulin.org that's a clearinghouse put on by beyond type one. And all it really does is bring all the coupon programs together. So it's one place where you can find out what you can get get insulin.org I will link that up in the show notes. We used it because as you'll hear in the interview, and I've shared this before, our current insurance does not cover the insulin that my son uses and wants to keep using and we needed to use coupons for that it did help us if you're struggling if you can't find these resources post in the Diabetes Connections Facebook group, you're more than welcome. We have a lot of great people who can help you figure this out. But you know, do what you need to do. as frustrating as it may be. Don't ration your insulin if you if you can possibly help it. I know that sounds ridiculous to even say that. But look, one in four people in this country do ration their insulin. So maybe there's something that we can do to kind of help you. As I said, jump through those hoops.

Alright, Michael Burke, Director of brand pharmacy merchandising in just a moment, but first Diabetes Connections is brought to you by Dario health and we first noticed Dario a couple of years ago at a conference, Benny thought being able to turn your smartphone into a meter was pretty amazing. And I'm excited to tell you that Dario offers even more now. The Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you With coaching when and how you need it and personalized reports based on your activity, find out more, go to my dario.com forward slash diabetes dash connections.

Michael, thanks for joining me a lot of information to get through and I appreciate you coming on. Thank you so much for having me. Let's just start with kind of an explanation, if you wouldn't mind, take us through what Walmart is doing here, what's the new version of insulin that Walmart is selling,

 

Michael Burke  5:28

we have recently launched analog insulins we can get into here in a second, the difference there, but it's an extension of our current line of insulin. So the insulin that we've had at Walmart for some time now is the human insulin, or the novolin products, our extension and new launch now is an analogue insulin, which are the newest version of fast acting insulin, and can help better regulate someone's blood glucose levels, very excited that we were able to get into this. It's been a large topic in the industry for a while on why we were just at human insulin as a private brand offering, and what more we could do so very excited that we got into the analog insulin, as it is the insulin to be used for a type one diabetic, and preferred in most cases and type twos.

 

Stacey Simms  6:19

Can you share a little bit about what happened here? Because this isn't something that Walmart could just do, right? This is a version of Novolog. I mean, this is an agreement with Novo Nordisk, can you kind of take us through what the process?

 

Michael Burke  6:30

Yeah, so we have had a long standing relationship with novo, they are the manufacturer of our human insulin, the Novolin ReliOn products that we've had on the market. And so with the changes of recent in the industry and a real focus, I'd say from across the board, from legislation to patient advocacy to patients, manufacturers, to pharmacies, to prescribers. There's been a large focus over the last two years on what more can be done in the space and so it allowed us an opportunity to work with novo and expand what we already had on the market is a private brand offering and bring a new private brand and new ReliOn offering in the Nova log in Nova log mix, both in a flex 10 and vile and offer a lower cost option for patients who had struggled with affordability to this point.

 

Stacey Simms  7:24

This is a branded insulin so you get ReliOn a brand novolog only at Walmart, am I Is that right? Is that how it works?

 

Michael Burke  7:32

Yes. So like everything healthcare, it's got to be confusing, right. So novolog is the branded name. That is the FDA filed and and trademarked products from Novo Nordisk. What we have done is partnered with Novo Nordisk to launch a ReliOn novolog and to ReliOn novolog MCs, same product manufactured by Novo Nordisk manufactured here actually in the US and comes off the same production lines is the same insulin, the difference being that it is branded with Walmart's private brand of ReliOn which enables us to bring that in house to self distribute to our stores help support our customers. So it offers us the opportunity to cut out some of the middlemen lower the cost, but still the same great product manufactured by Novo Nordisk still the same as their branded Nova log and Nova log mixes, just with a private brand twist from Walmart.

 

Stacey Simms  8:33

So this was announced in late June, as I remember, how has it been? Is it out now are people able to purchase it? What what's the roll up in like

 

Michael Burke  8:42

it is. So we started with the novolog vials and the Nova logs mix in our ReliOn brand, or sorry, the Nova log vials and the Nova log flex pins in our private brand of ReliOn. And then this last month, we were able to launch the mix in ReliOn flex pins and vials. So the regular novolog has been out a little bit longer. We're seeing really good traction, cut wonderful feedback from from patients, prescribers, various members of the industry, and has been really good reaction to this point, have a real sense of pride for us at Walmart to hear the great feedback. Our pharmacists and pharmacy teams are very excited about the product and how they can help support patients. We've heard lots of testimonials on where we've been able to save patients money and where patients were able to come to us and afford their insulin and not make different choices. And so it's for us been it's been wonderful since launch. Now. We're gonna keep that momentum going and make sure that we're reaching as many patients as we can and providing as much value and access as we possibly can in the insulin space.

 

Stacey Simms  9:50

It's some interesting questions for my listeners, if I could bring them to you. And the first one was, is there a limit to the amount that you can purchase per person per A month,

 

Michael Burke  10:00

there is not so these products, the newest launch the lion novolog and ReliOn Nova log MCs are prescription required. So as long as there's a valid prescription, there is no minimum or maximum that a patient can get dispensed at a time, a little bit different than our human insulin, which did have some limits on how much you could purchase at a time without a prescription, just due to some varying risks in an inability to keep in stock.

 

Stacey Simms  10:29

You've mentioned the mix a couple times what is the mix

 

Michael Burke  10:32

of it's a 7030 mix of analog insulin. So it's a fast and intermediate acting. And so for some patients, it is a better way to manage some of their peaks and valleys is to use an analog mixed insulin rather than just a single type of analog insulin and fast acting.

 

Stacey Simms  10:52

Is there is that again, pardon my ignorance is there isn't there a 7030 human insulin This is different or this is

 

Michael Burke  10:57

there is Yes, okay, insulin is a bit of a rabbit hole in the various types of insulin There are also mixes within them. So there are also long acting insulins. And there's some mixes in long acting or the parental insulin, their seeming insulin, which were the original insulins on the market that have mixes as well, and the analog insulin had mixes. And it's really just helped provide variety for patients and prescribers, that may not be seeing the right results with a single insulin, sometimes mix. Depending on what type of mix it is, is more beneficial and in lowering blood glucose, maintain the proper levels. Sometimes it's helpful in some patients without peaks and valleys. And I struggle with that

 

Stacey Simms  11:41

I just didn't realize it's my ignorance, I didn't realize that there was a 7030 analog. Alright, another question from the group. And another question, are they going to encourage providers to prescribe? Or is this solely an option for people with high deductible plans slash no insurance.

 

Michael Burke  11:57

So wherever there was a prescription, we will process whatever type of insurance where our goal is to have the lowest cost for a patient we possibly can. So may that be on our private brand insulin Navy on a brand or a different branded insulin? Every time a prescription comes to the pharmacy, we we do our best to make sure that we're going to give the lowest price. So our branded insulin continue to have some coverage today, our private brand does as well. So best opportunities is for patients to work with our pharmacy teams and make sure that they're getting the right Insulet at the lowest cost possible for them.

 

Stacey Simms  12:30

So I'm going to ask you a question you may not be able to answer and that's fine. But for clarification, so my son, our insurance currently covers novolog and doesn't like he doesn't prefer it. So if I were to get a prescription and go to Walmart, would my doctor have to write it for novolog? Would they have to write it for ReliOn novolog? Would I have to know could I possibly be saving more money if my doctor knew about ReliOn or does the pharmacist look at this at Walmart and say oh you want Nova log but it's gonna cost less if you use the ReliOn version

 

right back to Michael answering my question but first Diabetes Connections is brought to you by g Vogue hypo pen and you know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're gonna pass out there are lots of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar Jeeva hypo pen, it's the first auto injector to treat very low blood sugar tchibo kaipa pen is pre mixed and ready to go with no visible needle before Jeeva people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand, find out more go to Diabetes connections.com and click on the G book logo chivo shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash risk. Now back to Michael Burke answering my question about how much the pharmacist can do for you if you bring a regular old Nova log prescription to Walmart.

 

Michael Burke  14:10

Yes, for a no blog prescription or ReliOn Nova log private brand is interchangeable by the pharmacy or by the pharmacist. So a patient who has a current Nova log prescription or pharmacist can check to see if our private brands through insurance or other means would be a lower cost for that patient and can do that interchange themselves for those products so just know belong to our private brand over log. If a patient has a prescription for a another type of analog insulin that is not interchangeable with our private brand insulin. The pharmacist can verify insurance coverage for the patient and work with the prescriber on if it's appropriate to switch to private branded Nova log or to remain on the inside there. On today, so we can interchange with the novolog branded products themselves. But for other products, there would be a conversation between the pharmacist patients and prescriber to make sure they're getting the right insulin at the best cost for them.

 

Stacey Simms  15:15

Mike, you're going to have to forgive me as we move forward, we're going to start moving into more of a cynical part of the questions here, because as you've already alluded to problems is the rabbit hole. And we know I mentioned Nova log and human log, I mentioned that our insurance doesn't like human log to the point where and I've shared this story in the show, my son has done really well with it for many years. So when we changed insurance, I did not want to change insulins. So we took a it took a long time and some fighting, but I was able to use the coupons for human log, and we get human log for about $35 a month for all of the insulin that my son needs, which would be less, I believe, then if I were to use my insurance coverage, and get novolog or ReliOn at Walmart, I still feel like even though this will save some people some money, it just kind of feels like we're moving pieces around on the board. I guess my question would be for Walmart is how did you arrive at this price? Did you have to do you know? Did you have to set it a certain way to get the deal with novolog? This is gonna sound terrible. Do you throw darts at a board? I mean, who does for some people, it's going to be more expensive than what they're paying now. And I get some people will save money. But how did you come up with the price.

 

Michael Burke  16:29

So for us, we are one piece of the equation. As we've mentioned, healthcare is very complicated, especially the financial flows of healthcare. And so Walmart is one part of the financial equation as the dispensing pharmacy. We also have a distribution network and other assets that we utilize within Walmart. And so what we have done is taken all of our assets, tried to remove as many of the middlemen as possible. And put all of that back into the customer savings, customer pocket. We can't control all the levers there are in healthcare, but where we can we put it right back into the customers price, we truly mean it and Walmart and especially Walmart, health and wellness of the lives better and save money, right? Save money live betters Walmart from from the core, that's the only way that we could do so was was to take where we could remove some of the excess costs, and put it into that cash price, very complicated on the back end of who's making what decisions on formulary, and additional savings and eligibility for manufacturer discounts and coupons and on down the line. We can't control all of those. But what we can do is continue to take whatever we can out of that cost that inflation cost in the insulin and put it right back in to the cash price. And in that effort, hope to continue to drive down the overall cost of insulin to the marketplace.

 

Stacey Simms  18:06

Can you share? Is this an exclusive contract with Walmart? This was another question from one of my listeners, do you In other words, could other providers like Express Scripts? Or even Amazon You know, one of these folks that's getting into the pharmaceutical, you know, medication supply side? Could this be a first step toward other people doing something similar or is this exclusive,

 

Michael Burke  18:27

so the ReliOn private brand and exclusive for Walmart, that is our our trademark brand at Walmart for insulin and diabetic supplies products. So others couldn't utilize our ReliOn but we hope that this is part of other stepping up and and also looking to see how they can impact the space, how they can drive down costs. For us, it would be a great win if there was competition in the space. And we started to see insulin prices across the board come down because the competitive market only benefits the patients. And that's what we're looking to do. So we'd be happy if others were able to get in the game and figure out different ways to drive down costs for customers. Because at the end of the day, if there's an affordability issue, we won't be able to curb the growth of diabetes.

 

Stacey Simms  19:17

I'm curious, again, this this might be a ridiculous question. But with your answer in mind, do you have an agreement with novo in terms of how low you could get that cost? Because I mean, let's be honest, if you knock the cost down, it's set. What is it? 7288 per glass vial or 8588 for five flex pens, if you could knock that down to $35. I mean, you basically corner the market, no coupons or anything like that. Was that even discussed?

 

Michael Burke  19:44

Our focus is always on? How can we drive the lowest cost lowest price possible? We'll continue to focus on that. Like I said, there's only so many of the financial levers in healthcare that we own at Walmart and so we will continue to do our part To to take out everything we can from our end to make sure we're driving down prices and costs. But we only own so many of the levers. So we continue to look to novo and other partners to help us continue to drive those prices down

 

Stacey Simms  20:15

with the pricing that I just mentioned a moment ago. Are any coupons accepted for that? If people have novolog coupons? Are they good for ReliOn novolog? Or is that something completely separate?

 

Michael Burke  20:26

Yeah, that's completely separate. That's for qualified programs for their branded product. We don't have those Today, on our private brand product, what we continue to look at is, is how do we take the cost of those programs and put it right back into our pricing, because every day transparent, low prices, what we're looking for, as you mentioned earlier, the different insurance coverage, and copay assistance and discount cards and manufacturer discounts on down the line just makes healthcare so complicated for the average patient. And so our goal is to not continue to build those additional steps and needs and trapdoors and not put that pressure on our patients to need to go out and hunt and find those. But rather continue to put that right back into our cash price and make sure that we're offering as low as we can price on these insulins, in a transparent way, that that will continue to be our focus, just making this more complicated isn't going to help patients with affordability, access, continue to simplify a very complicated healthcare arena, especially insulin is to the benefit of all of our partners.

 

Stacey Simms  21:44

Just to be clear, the end, the prices that I mentioned, is that someone who doesn't have insurance, that's just a cash price.

 

Michael Burke  21:51

Yes, that is that is our cash price. And that is the starting price. So if a patient has insurance, or different type of coverage, that we will process and see their eligibility and what their coverage will do, and where that will bring down the price. We're seeing pretty good coverage so far since launch across the board. But you know that that continues to change. And as you said, there are different formularies and different pricing tiers out there. So that what we say is the highest you're going to pay for that box and vile and those prices, but we'll try to do everything we can to run insurance and check for every possible way to save money from those prices.

 

Stacey Simms  22:32

Here's another question from my listeners, are there any plans to offer the in pen cartridges, which is a different product, then no, then flex pens,

 

Michael Burke  22:41

we don't have that today, we continue to look in the space for for whatever we can can continue to offer and do but today, we do not have that as a as a product offering

 

Stacey Simms  22:51

any plans to do this with other insulins, you know, long acting or different brands or humalog or Tresiba.  You know any other types of insulins that are out there,

 

Michael Burke  23:01

we continue to look for opportunities, kind of across the board, from our generic team to our specialty team to the branded team that I'm on, to figure out what are the best ways to save our customers money and make sure that they can be adherent to their medications. So I can say that we'll continue to look at opportunities. Diabetes is obviously a growing issue in the United States. It continues to create barriers for our customers, our patients, our families. So we'll continue to invest time and effort in the space and make sure we're doing everything we can to do our part to help increase access, decreased costs and support our patients in their journey and diabetes.

 

Stacey Simms  23:42

I appreciate you taking on my questions. I mean, I know you hear the frustration in my voice and my listeners comments and questions, because it just seems and I can't say this is Walmart's responsibility. But it just seems like we've been told for years and years that you know, the price is because of research and, you know, development and and then to just suddenly say, Well, you know what, we don't need to sell it for $300. We can sell it for 7288. It kind of seems absurd from where we all sit. And I know it's complicated. And I guess there's no question here, Mike, but I could just say to you, please, as you move forward, I know everybody needs to make money. I know that's how the system is. But if Walmart really wants to, you know, improve lives, improve access, please keep pushing to lower the prices, because it does make a difference. One in four Americans is rationing insulin right now. And while this helps, it also points out how frankly broken the insulin pricing system is. So I appreciate you doing what you're doing. And I appreciate you taking these questions on. And really just thanks for listening to me talk about that as well.

 

Michael Burke  24:44

Yeah, I appreciate your time. I appreciate you having me on. Like you said, we're here as Walmart to continue to do our part. We're invested in making our communities healthier, both from a customer standpoint and employee standpoint, community standpoint. So thanks for having me. I'm glad to talk to you I understand the frustration. I've lived in this world for a long time. So I've lived in the frustration, I feel it. I'm a pharmacist myself. And this has been a very complicated space that, quite frankly, we'd love to add some light to and make easier, make more affordable and continue to drive better outcomes for patients.

 

Stacey Simms  25:22

Mike, thank you so much.

 

Michael Burke  25:23

Appreciate you having me on and tell you we'll continue to do our part.

 

Announcer  25:33

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  25:38

More information at Diabetes connections.com. Of course, there's a transcript along with each episode now. And I will link up more information about the Walmart program. I'm also going to link up a column I thought was fantastic. From the la times by David Lazarus. He wrote all about this earlier in the summer, when it first came out, he lives with type one, he gets it. And it's an interesting look at the marketplace and what he thinks with Walmart entering what he thinks it shows about the price of insulin. He's a great writer, I'd love to have on the show sometime. But I'll link that up.

Alright. Diabetes Connections is brought to you by Dexcom. And you know, it is hard to remember what things were like before we started using Dexcom. I mean, I really haven't forgotten, but I guess what I mean, it is so different. Now, when Benny was a toddler, we were doing something like 10 finger sticks a day. Even when he got older, we still did at least six to eight every day more when he wasn't feeling well or something was off. But with each iteration of Dexcom. We've done fewer and fewer sticks. The latest generation the Dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about these little worn out fingertips makes me so glad that Dexcom has helped us come so far. It's an incredible tool, and Benny's fingertips are healthy and smooth, which I never thought would happen when he was in preschool. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. learn more, go to Diabetes connections.com and click on the Dexcom logo.

Before I let you go, a couple of housekeeping things please send me your dear Dr. Banting audio if you have not heard me talk about this, I am collecting from you what you would say to Dr. Frederick Banting, the man credited with the discovery of insulin. Of course, there were many people helping him. But the Banting House Museum has an exhibit of print, dear Dr. Banting letters, I thought it'd be really fun to do an audio version. So let me know. I'm gonna link it up in the show notes. There's a whole blog post on Diabetes connections.com, about how to do it's very easy, just use your phone, but you got to get those three by the end of September.

And looking ahead, I'm doing a little bit of where are we going because we're starting to go places again, a little bit here. And there. I've got some virtual and some in person stuff coming up Delta permitting. So the virtual stuff I'm really excited next Tuesday. So if you're listening as this goes live, it was Tuesday, the 21st my JDRF local, but I think this is open to everybody nationally, and I'll put this in the Facebook group JDRF is starting something for older people with type one and I say older very judiciously because I believe I'm in this group with not with the diabetes, but in the older. You know, basically there's a lot of issues that people are facing as they hit, you know, middle age and older age. And it's not just Medicare. I mean, you know, but there's a lot of questions people with type one may have. And interestingly, I do a lot of research for this show my listenership very dedicated older folks. Again, I'm in this category now as I'm turning 50 in the month of October, but we're interested in issues pertaining to type one in their health as they get older. So I'm doing all of this to say next Tuesday, the 21st jdrf has a an online event that you can join in, I'm going to be doing a little bit of my in the news for this group. But it's going to be news that I have curated that is all to an older crowd. And I'm probably going to do it for 6065. And up I think that the the insurance, you know, cut off there makes perfect sense to try to find things that work for that group. But there is a Facebook group, I believe that they started as well. So more info on that.

And then later in October, we've got the shep podcasts conference out in Scottsdale, Arizona. That's the other group that I take part in quite a bit. I'm helping them out. It's women podcasters. Obviously, big group really excited to hang out with them. And we'll see in terms of you know how many in person events happen in the weeks and months to come? Hopefully they start picking up again, but lots of virtual stuff going on as well. So if you want me to come speak to your group online or in person, please let me know. I'm always excited to do that. And we gear it to you know, whoever I'm talking to parents or adults with type one, whatever you need.

Thank you, as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. We've got in the news live on Facebook every Wednesday at 4:30pm. Eastern and then that becomes the in the news episode. You can listen to right here every Friday. So we'll see you back here soon. Until then. Be kind to yourself.

 

Benny  29:59

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

Sep 10, 2021
It's "In the News..." the top diabetes headlines of the past seven days. This week: Why is COVID more dangerous with diabetes? A new study says technology (like pumps and CGMs) doesn't help "Diabetes Distress," more screening recommended for "social risk" of type 2, bioartificial pancreas research and there's a T1D Superhero movie in the works!
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Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I’m going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, on your own schedule.

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In the News is brought to you by Real Good Foods! Find their Entrée Bowls and all of their great products in your local grocery store, Target or Costco.

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Our top story this week.. type 2 diabetes has been identified for a while now as one of the main risk factors for severe COVID-19. New research from the University of Michigan says the culprit appears to be an enzyme called SETDB2, which is part of the reason why wounds don’t heal well in some people with diabetes. Put very simply, as levels of this enzyme went down, inflammation during COVID went up.

There is already a protein – Interferon – that is known to increase levels of this enzyme.. These researchers hope their findings will help in clinical trials of interferon or other treatments. They also say it’s important to go through a patient’s medical history to better target treatment for COVID.

https://medicalxpress.com/news/2021-09-people-diabetes-severe-covid-.html

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Interesting study about young adults and what these researchers call Diabetes Distress. The study shows Distress – which they don’t really define, but what sounds like depression or burnout or other mental health struggles – is associated with higher A1Cs. Not too much of a surprise, but they also found it doesn’t matter if these young adults using insulin pumps or CGMs or just multiple daily injections.

This Yale study was done by looking at past surveys of more than 400 people aged 18-29 in NY.

They found that while users of insulin pumps and CGMs have overall lower A1Cs, the benefit of device use diminishes when high diabetes distress is present.

https://www.healio.com/news/endocrinology/20210908/diabetes-distress-associated-with-higher-hba1c-for-young-adults-regardless-of-device-use

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Certain racial and ethnic minorities develop type 2 diabetes at a younger age than white Americans. That means , current diabetes screening and prevention practices for them may be inadequate and inequitable

This Northwestern Medicine study says American adults are diagnosed with type 2 at an average age of 50, but for Black and Mexican American adults it’s 4 to 7 years earlier. And more than 25% of that group report a diagnosis before turning 40.

Recommended screening time is important not just for better health but because screenings are almost always only covered by insurance when the U.S. Preventive Services Task Force recommends them.

If that sounds familiar, that’s the group that recently announced new guidelines that lowered the recommended age from 40 to 35 to start screening adults who are overweight or obese for type 2 diabetes. Future research should consider whether even earlier screening is indicated among individuals with exposure to social risks, the study authors said.

https://medicalxpress.com/news/2021-09-black-mexican-american-adults-diabetes.html

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Very early on but promising results for what’s being called a bio- artificial pancreas. This is a tiny implantable device that holds insulin-secreting cells in a compartment protecting them from the body's autoimmune response.

The micro-encapsulation device has the potential to be an autonomous system that would not require constant refilling and replacement of insulin cartridges, according to these researchers.

The prototype has two separate chambers — one that collects nutrients from the device's surroundings, and one that houses the protected cells.

Lots of work before this one’s ready for clinical trials

https://interestingengineering.com/a-bioartificial-pancreas-could-substantially-enhance-type-1-diabetes-treatment

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More to come, including news about a T1D superhero movie, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.

Real Good Foods. Where the mission is Be Real Good

They make nutritious foods— grain free, high in protein, never added sugar and from real ingredients— I was in Target this week and I saw the new Entrée bowls, I bought the Lemon Chicken and the Lasagna. The Lemon chicken was great! It uses hearts of palm pasta instead of regular noodles which I thought sounded odd but really tasted good. They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com.

Back to the news…

And a Big boost for diabetes camps. Lilly Diabetes will commit nearly $1 million over the next three years in a joint effort with the Helmsley Charitable Trust to the Type 1 Diabetes Camps Initiative.

The money is going specifically to non-profit diabetes camping organizations nationwide serving low-income youth living with T1D. and help diabetes camps adapt to the physical requirements of COVID-19 and better serve youth living with T1D via capital improvements.

https://www.prnewswire.com/news-releases/lilly-diabetes-joins-the-leona-m-and-harry-b-helmsley-charitable-trust-to-pledge-significant-funding-to-type-1-diabetes-camps-initiative-301368797.html

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A new movie with a superhero who lives with type 1 is coming to theaters next summer. Called “Gum-she: The Type 1 Protector,” it’s created by Jermaine Hargrove, diagnosed with type one 15 years ago as an adult.

The main character Justice Johnson has diabetes but it’s not the cause of her superpower. That comes from the bubble gum she’s always chewing and she’s able to shoot gum from her palms to help her save the world.

The American Diabetes Association is partnering on the film and  promoting it.. one of the big themes is health equity..

There is a great article in diabetes mine all about this, I’ll link that up. In it, Hargrove says Bubble gum brings everyone together. Like music: it’s everywhere.”

I’m excited about this – but I have to say – if this had come out when my kids were little – I would be hiding all of the bubble gum. If you watch the teaser trailer – she is shooting bubble gum everywhere! Using it to create bridges and running around like spider man. So.. it looks really cute but knowing my kids? Again.. I’d have to hide the gum.

Watch for the trailer on world diabetes day – nov 14. The full film will be released next summer.

https://www.healthline.com/diabetesmine/a-new-diabetes-superhero-movie-you-wont-want-to-miss https://gumshe.com/

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Please join me wherever you get podcasts for our next episode - The episode out right now is with Ethan Orr – the Colorado high school swimmer removed from his meet because of his the medical tape over his CGM.

And send me your Dear Dr. Banting audio! What would you say to the man credited with the discovery of insulin? All the details and how to send it to me is in the show notes.

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

 

Sep 7, 2021

A high school swimmer with diabetes is told he can’t compete at the state championships because of his CGM’s medical tape. It's a story that's been all over social media and national news outlets. What really happened here? We talk to Ethan Orr and his mother, Amanda Terrell-Orr.

They explain  what happened that day, what they’d like to see change and what we can all do to protect our rights when it comes to diabetes.

Also this week! Send us your "Dear Dr. Banting" audio! Details here 

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

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Episode transcription below:

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system.

This is Diabetes Connections with Stacey Simms.

This week, you've likely seen the story of a high school swimmer with diabetes told he can't compete at the state championships because of the CGM, his medical team what really happened here, we talked to Ethan Orr and his mother.

 

Amanda Terrell-Orr  0:41

The whole point of the rule is to prevent a swimmer from having a competitive advantage. You would not have to be someone who understood type 1 diabetes to look at what even had on his arm and know that of course that would not cause the competitive advantage. Of course, it was just medical tape covering up a medical device.

 

Stacey Simms  1:00

Amanda Terrell Orr and 16 year old Ethan join me to explain in their own words, what happened that day, what they'd like to see change and what we can all do to protect our rights when it comes to diabetes.

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

Welcome to another week of the show. Always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son, Benny was diagnosed with type one right before he turned two. That was almost 15 years ago. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast.

Before we jump in. I need your help. I am trying something for November. I want to hear your dear Dr. Banting stories and letters. I posted this on social media. If you're in the Facebook group Diabetes Connections of the group or you get my emails, you will be seeing this this week and for the next couple of weeks. Because all the month of September. I'm asking you to record some audio. It's very simple. Just do it on your phone. As part of the dear Dr. Banting exhibit. We talked to the folks at Banting house the museum where Dr. Frederick Banting had his eureka moment where he came up with the idea that led to the discovery of insulin with other people. But Banting house has an exhibit called dear Dr. Banting. And I go much more in depth on this. It's a Diabetes connections.com. It's on my social media. I'm asking you, what would you say if you could thank Dr. Banting for yourself for your child? Right, just thank him. So all the specifics are in the show notes. Basically just try to keep it to a minute. I'd like to play these back during the month of November. I'm really looking forward to what you have to say. Don't worry about making it perfect. Just try not to have too much background noise use your phone's voice memo app doesn't have to be anything fancy and send it to me Stacy at Diabetes connections.com I cannot wait to hear what you have to say.

Alright if you haven't heard and boy this was all over social media last week and this week. Here's a quick synopsis of what has been reported. Amanda and Ethan will go much more in depth and and frankly set a few things straight that were reported a little bit inaccurately even has type 1 diabetes. He was diagnosed at age 10. He wears a Dexcom G6  he uses simpatch the brand of the tape is not important, but you should know that he wears the medical tape over the Dexcom as many people do, and that's pretty much what does that issue here. He also wears a Tandem t slim x two pump that he removes most of the time when he swims.

Ethan swam all season for his high school in Colorado Springs. No issue he had the CGM on for every meet. But at the state championship, as you'll hear, it became an issue. And I'll let me tell that story. But you should know going in is that this is not a lawsuit. The family is not suing for damages or anything like that they filed a complaint with the United States Department of Justice, Civil Rights Division. This is not about money. And you may have also heard that the CHS at the Colorado high school activities Association, which is receiving the complaint here. They say that Ethan did not have a signed medical authorization to have something like this. Well, he has a signed 504 plan. So does that overrule? Or could that be looked at is in place of what they're talking about in terms of medical authorization to wear tape in the pool because it applies to his diabetes and his diabetes medical management plan, USA swim, that governing body does allow medical tape. So there's a lot going on here and I think it's more in depth. And then you've seen in certainly a lot of these media reports, as well done as they are, you know, these people don't speak diabetes, they don't cover diabetes on a regular basis. So it's really excited that Amanda and Ethan agreed to come on and share their story where we could really kind of drill down and figure out what happened here and more importantly to me learn what we can all do to prepare our kids for sports and to kind of learn what we can all do to stand up for ourselves when it comes to diabetes. Right.

Okay, so quick housekeeping note, I'm nosy I like to talk to people so we set the table for a while here I talk about his diagnosis story how he adjusted to swimming you know all that kind of stuff. So if you're just here for the lawsuit stuff, we don't talk about the actual swim meet until about 12 minutes into the interview. So you could go ahead and skip ahead I'm not offended but just know that there's some getting to know you stuff that happens before we talk about the nitty gritty

Alright, Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's what most of us carry fast acting sugar and in the case of very low blood sugar, why do we carry emergency glucagon there's a new option called Gvoke Hypopen the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the Gvoke Logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.

Amanda and Ethan, thank you so much. We did this on short notice I really appreciate you coming on and sharing your story.

 

Amanda Terrell-Orr  6:27

You're welcome. Thank you for having us. Thank you.

 

Stacey Simms  6:31

And Ethan, you got up pretty early to do this. I am East Coast, your West Coast. So I appreciate that very much.

 

Ethan Orrr  6:35

It's all good.

 

Stacey Simms  6:39

Let's back up a little bit before we jump into what happened here and the lawsuit and everything. Amanda, let me start with you. Tell me your diagnosis story.

 

Amanda Terrell-Orr  6:48

Sure. So Ethan was 10 when he was diagnosed, and our diagnosis story, I think is fairly typical of other people we had noticed, Ethan's teachers had noticed that we had noticed that he was going to the bathroom way more than usual. So I took him to his pediatrician and expressed some concern about that didn't really know what might be happening. They did a test of his urine. And it didn't show any kinds of problems with sugar or ketones or anything like that. So we just sort of stopped at that point. And then you know, weeks go by, and this is still happening. We went on a small vacation and even drank all the bottled water that we had, and was still going to the bathroom all the time. And then the day before Easter that year even had been kind of wrestling with a friend. And he started to be short of breath. And he also felt like really like something was wrong. So the morning of Easter, we wake up and I look in his mouth, and I see white spots in his mouth. And I say to him, it's time we need to go to urgent care. So in the back of my mind this whole time has been some education that I saw on a friend's Facebook post about type 1 diabetes, her son has type one. And she always posts educational information. And so in the back of my mind, I was thinking, I wonder if the test whatever they did at the pediatrician was wrong. So we go to urgent care, they test them for strep throat, of course. And then I mentioned to the doctor that I'm concerned because of these other symptoms. The doctor, of course, has someone test his blood sugar. And luckily for him, it wasn't extremely high. He wasn't NDK. But urgent care at that time, send us directly to the hospital. So Ethan really stayed a day in the hospital. And the next morning, we were able to connect with the Barbara Davis center part of Children's Hospital in Colorado. It's an excellent place for treatment of kids with type one. So we were able to go there and immediately start connecting with resources and other families and of course, like, like everyone after diagnosis, drinking from the firehose to try to figure out how are we going to live in this new life?

 

Stacey Simms  9:10

Even What do you remember that time?

 

Ethan Orrr  9:12

I remember during the day before with all the symptoms that I would wake up in the middle of the night like to use the restroom. I didn't know what diabetes was immediately in the car. So mom was tearing up a little bit on our way to the hospital. And she when I asked asked, like, what is diabetes? She's like, well, you're gonna be getting quite a few shots today. Because like home, right? No, I like I thought she was kidding. At first cuz I've never heard of some like that. The beginning is I was just in shock a little bit. But then like, I slowly edged in or wet or things will be good. Nothing's gonna change too much.

 

Stacey Simms  9:53

I don't want to fast forward too much as we're getting to, you know, the news story here, but you're 16 now, so Were those six years. Obviously you play sports, did things kind of go to a better place? Do you feel like you guys managed it pretty well?

 

Ethan Orrr  10:08

Right? When I got diabetes, I was still competing, swimming wise, and I was trying to swim for the Colorado torpedoes in Manitou. At the time I, I had my CGM, but it didn't work in the water was a different type of CGM. So my phone couldn't connect in I was in a spot where I was close to my honeymoon period. And so we had a we are way too many troubles, trying to like dangerous troubles trying to be able to swim that year. So I ended up just pulling out, you know, we made a family decision is too dangerous, because I could feel my blood, like when I went low or high or anything like that isn't that low? This year, at the beginning of the season, we are a little bit of a problem. Not a little, there's a big problem at the beginning of the season, because my body wasn't ready and adjusted for stuff like that. So I had a lot of very, very bad lows during some practice for like about a month. And then it finally picked up and I was completely fine after that. And I was able to swim very well with the rest of it without blood sugar issues.

 

Stacey Simms  11:16

Amanda, let me switch over to you. Tell me about that experience. Because I know with my son, every seat Well, first of all, he changes sports every couple of years, which is bananas, because we figure it out. And then he moves on. So what was swimming? Like? Yeah, you hear you,

 

Amanda Terrell-Orr  11:29

I hear you. Yes, we have that experience as well. It sounds like our kids are similar that way Ethan likes to jump around sports. So he had been even been competitive swimming for not an insignificant amount of time, I would say when he was diagnosed, and it was just in that honeymoon period and learning everything. And being just terrified of every significant low. You know, at the beginning, those things seem really insurmountable. Because even had a couple of really scary lows, it was also kind of affecting his confidence to stay in swimming. So sadly, something that he really loves. What we said is we put it on pause. We didn't think it would be on pause this long. But it was really Ethan's choice. And so we were really happy this season, when he chose swimming again. And then he started swimming, and everything that we thought we knew about management of his diabetes changed in some ways. And in Ethan's case, he was he's very active, he's very fit. But his body was not used to the kinds of energy that need to be expended to swim in particular. So we tried all the things, all the tricks, all the tips that everybody gave us. And he was still having really significant lows, having to be assisted out of the pool sometimes. But to his credit, and one of the things I'm so proud of him for is that he swam right through that he had to sit out of practice a lot because of low blood sugars. But he still kept going every day. And he believed us when we said your team is going to help you and by team I meant his endocrinology team, and also athletes with type 1 diabetes. So we threw out questions out there into the social media world and got great advice from other people, athletes with type one. And we combine that with the guidance from our endocrinologist and Ethan's body also adjusted to the swimming. And so at the end of all of that he was at the end of the season, he was really doing pretty well in terms of being able to swim safely. So we were very proud of how he came through this season. You know, to be honest, as a person without type 1 diabetes, and an adult. I don't think I would have done that. It was very, very hard, but he stuck it through and was fortunate enough to be able to go to the state championships.

 

Stacey Simms  14:01

He said I'm curious what worked. Looking back on all of that.

 

Right back to Ethan answering my question, but first Diabetes Connections is brought to you by Dario Health and bottom line you need a plan of action with diabetes. We've been very lucky Benny's endo has helped us with that and he understands the plan has to change. As Benny gets older, you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months. reduction of A1C was in three months and a 58% decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your diabetes management could have my dario.com forward slash diabetes dash connections for more proven results and for information about the plan.

Now back to Ethan explaining how they got his blood sugar more stable during and after swimming.

 

Ethan Orrr  15:03

So to be honest, the only reason it worked, I in my body got adjusted. At the beginning of it, I would have to take seven juices, maybe practice a, like during the entire thing, not not like a one point. But like throughout of like a one hour practice is really bad. But something that we did is I had gummies like little energy energy jam. Yeah, it's like the glucose gels. Yeah, we had glucose gels next to it. Because if you have too many fluids, with swimming, you can get nauseous, especially with it being juicing and eating granola bars before you, when something very hard tends not to work out very well to something that's like flexible with your stomach. So it's not like you're eating like a valley granola bar, and then you're going into pool and wanting to puke.

 

Amanda Terrell-Orr  16:03

Yeah, even some of the things that you're maybe not remembering because they just became so routine for us is suspending his pump. like two hours before practice making sure he didn't have any insulin on board keyword also, toward the end there where we were waiting for his body to adjust, he would have the equivalent of a meal, about an hour before practice with no insulin to cover it. And he would still getting into the water, those first bit of time would still go very low in a short period of time. So then he would have to sit out like he was saying, you know, have a lot of juice. And then he would be nauseous and not able to swim as well. What the doctor kept telling us is, you know, hang in there, we're going to figure this out, your body's going to adjust. And sure enough that ended up happening. But those are the kinds of things that we had to try in the early part of the season.

 

Stacey Simms  16:57

Sounds very familiar. My son's first wrestling practice freshman year of high school, he ate 85 uncovered carbs and still would not go above 70. Yeah, I was able.

 

Amanda Terrell-Orr  17:09

Yeah, the other thing that was really challenging that we had never experienced before, but we know that other people have since we reached out is overnight. Well, after practice, Ethan would have lows that would last for hours, no matter how many carbs we would give him. So then we would have to get to the point where we were micro dosing glucagon with the advice of his doctor in his circumstance to try to bring his blood sugar back up. But there were nights where my husband and I were up for four hours at a time just trying to get his blood sugar into a safe range. And this year, is the first time in all of those years, he's had diabetes, that we had to ask for emergency medical assistance for a very severe low. So it was a really, really difficult time. But what we like to think about that, and you know, he's very resilient, he got through that time. And you know, the type one community was really helpful in helping us come up with ways that we could try to address these big problems that we're facing.

 

Stacey Simms  18:14

So you brought up the state championships. Let's just jump into that now and talk about what happened and the basis of the lawsuit. And you know, what you hope to accomplish here, but start by telling me and Amanda, let me ask you what happened at the state championships.

 

Amanda Terrell-Orr  18:29

So the summary version of that, that I would say is that even had several events that day, they were all relay events, which means that he was competing as part of a small team of other swimmers. He had swam to those events. And the last event of the day would have been his final relay event swim. He was standing at the side of the pool with another student next to a referee, and the referee asked Ethan about what was on his arm. And so Ethan explained, of course, that it was a continuous glucose monitor that it measured his blood sugar that it was for type 1 diabetes, and that he had the patch over it to keep it on during swimming, which every athlete knows that everybody's body's different, but you are more likely to need extra cover over your CGM when you're sweating or swimming or that kind of thing. So the referee asked Ethan, who his coach was and who he swam for, and minutes before the event was scheduled to begin the referee address the coach. The coach told the referee all the same information that Ethan told him And in addition, said Ethan has an active 504 plan that allows him to have his medical equipment. The referee insisted that Ethan was in violation of what is commonly called the tape rule, which is essentially the fact that a swimmer can't wear something extra on their body to aid their speed boy The four body compression because those things could give the swimmer a competitive advantage. The coach tries to explain again everything that was going on. And that not one time in the 70s even swam prior to the state championship. Did any other referee believe that that rule applies even. It's always obvious in some of the videos that various news stations have used. You can see it on Ethan's are messy swimming. So clearly referees who are paying close attention to the swimmer to see whether their stroke is off or they're, you know, doing anything else that would be a violation saw this on his arm and no one said anything. So the referee was told that information as well. The referee insisted that in order to compete under that tape rule, he would have needed a doctor's note to say that it was medically necessary. The whole point of the rule is to prevent a swimmer from having a competitive advantage, you would not have to be someone who understood type 1 diabetes to look at what even had on his arm. And know that of course, it would not cause a competitive advantage. Of course, it was just medical tape covering up a medical device, the Dexcom G6  says on it what it is. And I timed it, it takes about 15 seconds on Google to figure out what that is. So if the referee did not believe the information he was getting, and the whole purpose of the doctor's note is to say, you know if needed, and so it doesn't give a competitive advantage. All of that together means that the referee heard all that information. And he either didn't believe it. Or he continued to believe that either was potentially cheating by wearing a foreign device or substance to aid his speed buoyancy or body compression. So at that time, the referee said that Ethan was not going to be allowed to swim. One of the important things that has happened in the news that I know the governing body is having trouble with is the use of the term disqualification. In my mind when the kid doesn't get to swim, the semantics of that don't matter. But it wasn't the fact that even swam in the meets in that final event and was disqualified, he was not allowed to swim the final or that. And so what the coach tells us happens from that point is that the referee says Ethan will not be able to swim, you were required to have this note, he's in violation of the tape roll. And so the referees scramble, because again, he's addressed minutes before the event starts and substitute another swimmer for Ethan. But what the coach told us is that in the rules, when you're going to substitute a swimmer, you have to go to, you know, like the administrative table and make that substitution in a particular kind of way. And so he was not able to do that in that time period. And the coach indicated to us that the relay team was subsequently disqualified for not having a proper substitution. Now, we learned for the first time when chafta issued their statement, that they are saying that the team was disqualified for an early start. And, you know, from our perspective, although it's really upsetting to us that the whole team would have been potentially disqualified on this substitution issue. The fact is, the crux of this is that Ethan was not allowed to swim, because someone incorrectly interpreted what he had on his body is potentially cheating and violation of the taping raw. That is essentially what happened in Ethan's case. And that just started all of the research and that kind of thing that our family did before we decided to engage a lawyer got it.

 

Stacey Simms  23:50

My question, I had a lot of questions. But one of my questions is, is it your belief, and I assume it is, since you're going to have with the lawsuit, that having a 504 plan, being covered by the American with Disabilities Act supersedes that tape rule.

 

Amanda Terrell-Orr  24:05

There are several points to what we're saying. So the first thing we're saying is the rule doesn't apply to even circumstance. And although the high school associations have not chosen to be this clear, the USA Swimming rules are very clear that taping for medical devices is not a violation of this taping rule is really about kt tape or therapeutic tape that would be used to support somebody muscles or joints or ligaments or tendons in a way that would give them a competitive advantage. Anybody who knows anything about swimming knows that when something protrudes from your body like a CGM, that it actually causes the disadvantage because we're talking about milliseconds of time and surface drag can actually make him slower. Additionally, we know the rule didn't apply because no other referee instead Prior meet even mentioned it as being possibly implicated by that rule. So let's say he even mistakenly believes that the rule applies, there are a couple things about that he did have a 504. We do think that's important, because the 504 says that he's able to have his medical devices at all times, in all school activities. Secondly, and I believe this is standard across the country, but even had to have a sports physical before he participated in sports that said that he was safe to participate in those sports. So there are lots of reasons that we believe the rule didn't apply. Even if it did, Ethan should have been fine without a specific doctor's note to prove he had type 1 diabetes. And further, the referee under the rules had the discretion to allow even to swim if he did not find that to be excessive. And he says, and he chose not to let even swim. So for all of those reasons, I think the way I described it to someone is there was a tortured reading of that rule to exclude a kid was type 1 diabetes isn't

 

Stacey Simms  26:13

how is your team reacted to all of this?

 

Ethan Orrr  26:15

Whoa, I didn't find out until I was literally walking to the blocks. My team was a little bit upset, but because they didn't know what was going on. At first, my friend, I was with one of my teammates. While that was happening, and he's like, going on well, the coaches talk or not the coach, the referees talking to me. And so I was walking to start the event, like I was walking around the pool, and they were like, Ethan, why aren't you sorry? I was like, What? What do you mean? And they're like, you're not swimming coach just said, Go talk to coach right now. We're starting to bet right now. Aren't we? Just like, yeah, go talk to coach right now. And we're gonna talk to him. And he was like, yeah, we're looking. I'm looking at the rulebook right now. And we're all looking at the rulebook really quick, but you're not able to swim. Because the CGM on time. And so everyone was like, why? because they didn't know it was forward. And the teammates that I was with is like, was it that coach, or, or the rapper or whatever? I was like, yeah, know what? He was like, yeah. I don't know what to tell you. I was like, Oh, okay. We were all upset about it. I was really dumb. Did

 

Stacey Simms  27:26

they support you? I mean, in these days in the time that has passed, tell me about that.

 

Ethan Orrr  27:32

Oh, yeah, no, they've always, I'm friends with everyone on the swim team.

 

Amanda Terrell-Orr  27:35

They're all super great. My coaches super great. The trainer for the cornado, the school that I stand for, is really great. My teammates are really supportive whenever I would have to get out, you know, they just, they'd make jokes, they'd be funny about it, like try and like lighten it up and whatever. They're really great. They're a really great team, they are really great team, I'm still going to swim for them this year, I'm still competing for I'm going to try and compete for state this year to this. I think the other thing, even in terms of the support even got, we we really can't say enough about this coach and the athletic trainer, it was a difficult season for them to of course, because of everything Ethan went through. So this happened, the state championship happened at the end of June, at the very beginning of July, the coach actually sent an email to chafa and laid out the situation of what occurred, asked if they would work with him, because he believed that what happened could potentially be a violation of even federal right. And I spoke with the coach kind of throughout that time. But at the end of July, I spoke with him more in depth and and I really wanted to know what kind of response he had received, he had received zero response to that email. So here we have a coach that's trying to act, you know, advocate for his student with diabetes and try to get something change. So this wouldn't happen again. And he received no response to that,

 

Stacey Simms  29:04

you know, Amanda, a lot of people are going to be really excited that you've done this and want to see this change and are rooting for you. But a lot of people are also going to be wondering why a lawsuit. There's just so much that happens to you all. When you file a lawsuit, you're going to get a lot of negative attention, you're going to get pushback, we file the lawsuit and what are you seeking in the lawsuit?

 

Amanda Terrell-Orr  29:26

So I'm glad that you raised that. That's one of the points that is confusing to people. We actually have not filed a lawsuit we filed a complaint with the Department of Justice alleging a civil rights violation. So that process is a different kind of process. That's not about monetary gain for anyone. That process is about the Department of Justice investigating whether or not there was a violation of even civil rights and if so, what kind of oversight is necessary over the governing body so that athletes with this abilities don't experience those kind of violation. So it's essentially a mechanism to enforce oversight and change, but not a mechanism whereby we would receive any funds whatsoever. Our lawyer is doing this pro bono. If we were to file a lawsuit, that would be a different circumstance. But it isn't our goal. To get money out of this situation, our goal has several parts to it, the main part of it is both the national and the state rules need to get with the times and make the kind of changes that USA Swimming has made. That makes it clear that taping of a medical device is not cheating. That is the primary thing that we need to see. I also truly believe that chafa in their rulemaking process needs to include the voice of athletes with disabilities, or people who have a lot of familiarity with those areas, I think that would help give voice to some of these areas where they clearly have not educated themselves. And I just think that voice is so important. So those are a couple of the main things that we're trying to get accomplished here. And, you know, in general, the governing body had the opportunity to say, we really care about this, we want to work with these folks to try to make change. We had one referee interpreted this way. This isn't what we believe as a system. But their statement, you can see, it's clear that they believe that discriminatory reading of that rule is the right reading of the rule. So we need some help from Department of Justice or other avenues to force the issue to get them to change. What kind of tape do you use? Do

 

Stacey Simms  31:45

you mind? I mean, you can share a brand name or just you know, because there's so many different overlays for the Dexcom. I'm curious what it looks like

 

Amanda Terrell-Orr  31:50

he was wearing the simpatch. Got it. And one of the things that I've been saying to people, if they're not swimmers, or athletes, they don't necessarily understand the difference between my kcca for therapeutic tape and Matt. But as you know, and as other people who use those overlay patches, now, that patch was specifically exclusively and obviously designed for that purpose. It has a perfect cut out just for made for the exact model of CGM that you have. And it's clearly obviously just holding that device on. So anyone who looks at the simpatch, or any other similar kind of patch, can easily understand what it's there to do. And not that and understand that it's not there to aid his speed, buoyancy or body compression, it can't do any of those things. And it's clear that it can't when you look at it,

 

Stacey Simms  32:45

he said you've said you're gonna start swimming again, you want to make it to the states again, why is this got to be very disruptive to you? This can't be a fun thing to be going through. Tell me why you like swimming.

 

Ethan Orrr  32:56

It's one of the hardest sports for you to be able to do. I really enjoy the individuality, but also how you work as a team. I mean, no matter what the points that you get for individually swimming, impact the entire team on in deciding if you win or lose the knee or event or competition, whatever, whatever composition, I really loved swimming, I've always loved swimming. But once I got diabetes, there's a we couldn't manage it properly without being safe. But nowadays I can. And I totally love to pursue it. I feel like it's great. It's great for the body. It's great. It's great in general, and just to get your mind off of whatever I mean, I think this is an amazing sport. And I'd love to pursue it. So even if we've had troubles, hopefully, we shouldn't have those same troubles. If the if we get the rule change that we need and want then I shouldn't have the problem, then I can swim and still compete. I don't hate chess or anything like that. I just want some real change. You know, before I let you go,

 

Stacey Simms  33:57

Amanda, let me ask you what I saw this story on social media. I feel like it's been in every diabetes Facebook group. Obviously it was local television and got picked up by national media. What's the response been like for you?

 

Amanda Terrell-Orr  34:08

What I want to focus on is the positive first because that is the overwhelming majority of response we've gotten. We've just received so much support. We've received support from jdrf. We've received some for support from Team Novo Nordisk we've received support we were contacted by Dexcom. So all of those are good, but also the heartfelt messages that we've received from other parents of athletes with type one have been moving and have really helped support us through a time where we're getting the kind of attention that we did not expect from this. We expected that we would file something that our lawyer would do a press release and a couple of local channels would be interested. And then we would just wait and see what happens. This has been way more of a response than we expected and the back much Already in that response has been positive and supportive. But as we know, in the public domain, there are always people who don't think about the consequences of what they say on real people. And they come after, you know, a 16 year old in their comments. And so early on, our lawyer told us don't read the comments. And that was really great advice. So now, we basically just engaged with people who have commented on, you know, like a diabetes, Facebook post, or some other kind of social, that's from folks who understand that better. And, you know, we've kind of asked those people who are supporting us, if they're reading the comments, they can address those issues, they can address people who are trolling us. And that would be really helpful to us, because we just can't be beat up that way. But I also think chaffles response was very disappointing to us. And it felt like they were minimizing denying and blaming. And they had the opportunity to look at this much differently in a way that was geared toward change that could allow student participation. And they chose not to do that. It felt like backlash to us that they chose to respond in that way. But by and large, boy, we really appreciate all the support we're getting, it's really the fuel that keeps us going. Because this is hard, it's really hard to be in the spotlight this way, and even made this choice themselves about whether we were going to do this after a lot of research. And so it's wonderful when people support him and say, Thank you, Ethan, for doing this, and lift him up around his struggle. That is just been wonderful.

 

Stacey Simms  36:44

He's gonna let you have the last word here. When you hear your mom say all this stuff, like what's going through your head? Did you think it would get to this point where it's not nationwide?

 

Ethan Orrr  36:53

Honestly, no, I was surprised that it got really big, really quick. I was not expecting that at all. So I'm really happy that that people are supporting it.

 

Stacey Simms  37:06

Well, thank you so much for joining me, keep us posted. love to know how this moves forward and plays out. But thanks for explaining. And, you know, we wish you all the best. Thank you both.

 

Amanda Terrell-Orr  37:16

Thank you so much for having us.

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  37:30

More information at Diabetes connections.com. I'm gonna link up some of the stories about Ethan that some of you may have already seen most, we're gonna try to link up some follow up as the story progresses, because we're really just at the beginning here, you know, I'm going to follow through this complaint with the Department of Justice, see what the rule changes are like if they come through and see if other clubs and athletic associations follow suit, or do anything that is proactive. If you find something in your local community, let me know if there's a rule change because of this, or I gotta tell you, we've already talked to the coach about Benny's wrestling, and you know how he wears his equipment. I'm double checking, I just want to make sure that we're all good, because while he has been fine so far, and last year, we saw a ref wearing a T slim pump at a couple of the meats. I didn't go over. But Benny did go over after the meets and just say hello, when you just showed us pump and that kind of thing. But even if the ref has type one and wears a pump, you know, there still may be a misunderstanding of the rules. So I I'm definitely double checking all of that, to make sure that we're not gonna have any issues this year. It's complicated.

I gotta tell you that my favorite part of the whole story is how Ethan's teammates have hung with him. Right. And they haven't made him feel different. They haven't made him feel like he's to blame for things. We've been so lucky with Benny that he's surrounded with people who support him as well. And if you heard the episode he was on a couple weeks ago. He says part of that is because he just doesn't want to be with people who don't support them. And we're really, really lucky that he feels that way. So Ethan is lucky as well. But Big thanks to Ethan and Amanda for coming on so quickly and sharing this story and making some time for me.

All right, Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom system since he was nine years old. We started with Dexcom back in December of 2013. And the system just keeps getting better. The Dexcom G6  is FDA permitted for no finger sticks for calibration and diabetes treatment decisions you can share with up to 10 people from your smart device. The G6  has 10 day sensor wear and the applicator is so easy. I haven't done one insertion since we got it Ben he does them all himself. He's a busy kid and knowing he can just take a quick glance at his blood glucose numbers to make better treatment decisions is reassuring. Of course we still love the alerts and alarms so that we can set them how we want if your glucose alerts and readings from the G6  do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

If you are listening to this episode as it goes live on September 7, then I wish you a very happy new year. It is the Jewish holiday of Rosh Hashanah. And as you probably know, these podcast episodes are taped and scheduled in advance. So I am not working today I am celebrating the new year with friends and family. And I don't mind sharing that. We always go to our same friend's house. I don't have any family locally here in the Charlotte, North Carolina area. And our friends this year, were probably having like 20 to 30 people, they bought COVID tests for everybody those over the counter COVID test as I'm taping, I haven't taken it yet. When you're listening to this, I will have taken it. But I thought that was really interesting. We're all vaccinated this group we've gotten together before earlier in the summer, it was actually the first group of people that I got together with in Gosh, I want to say maybe late May, you know, we'd all been vaccinated, but he's really excited. Nobody knew Delta was coming. And so we know we're all reacting to this in different ways. I'm really, I guess the word is interested that this is going on. I wonder how many other people are doing this for small private gatherings. I'm excited to be celebrating and may it be a sweet and happy new here because my goodness, we definitely need it. So I'm gonna leave it there.

Big thanks to my editor John Bukenas from audio editing solutions for really jumping in here. We put this together much more quickly than our usual episodes. So thanks so much as always, John, and thank you so much for listening. I'm Stacey Simms. I'll see you back here on Wednesday for in the news. That'll be Wednesday live on Facebook at 430 Eastern Time, and then we turn that into a podcast episode for Friday. Alright, until then, be kind to yourself.

 

Benny  41:35

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrong avenged

Sep 3, 2021

This week "In the News.." Did wearing a CGM in the water disqualify a high school swimmer? What his family says happened and why they're suing. The ADA wants to start using the word "remission" instead of "reversed" for type 2 diabetes - we'll talk about why. Dexcom says they are no long smoothing data, new migraine and diabetes research and T1Interntioanl is out with their latest survey results about the price and use of insulin.

Join us Live on Facebook each Wednesday at 4:30pm EDT!

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

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Episode transcript below

 

Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I’m going to link up my sources in the Facebook comments - where we are live - and in the show notes at d-c dot com when this airs as a podcast.. so you can read more if you want, whenever you want.

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In the News is brought to you by Real Good Foods! Find them in your local grocery store, Target or Costco. Real Food You Feel Good About Eating.

XX

Top story this week.. A discrimination complaint against the Colorado High School Activities Association has been filed with the U.S. Department of Justice. At issue? A student was disqualified for wearing his continuous glucose monitor.  Ethan Orr is a 16-year-old swimmer whose team qualified for the state championships.

According to his attorney Orr wore a blood glucose monitor taped to his arm during seven prior matches, including the one in which his team qualified for the state championships, with no issue.

But at this meet, the ref said Orr would not be allowed to swim in his last race because of his glucose monitor and tape. They didn’t have a sub so the whole team was disqualified.

The attorney says, “This is simply blatant discrimination against a kid with a disability, and it led to unnecessary and unfair consequences to him, his teammates, and the school,”

According to the lawsuit, Orr is protected under two federal laws - the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973.

I’ve reached out to the local reporter on this story and hope to talk to the family soon

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People with type 2 diabetes should be considered in remission after sustaining normal blood glucose levels for three months or more without medication. That’s a new consensus statement from the American Diabetes Association® and several other international groups.

They recommend testing every year to determine long term maintenance.

The real news here - as I see it - is trying to get people to stop saying “Reversal” or “cure” when it comes to diabetes. The statement here doesn’t seem to be about the science, but says the word remission “strikes an appropriate balance” between the diabetes not being active and progressive, but also recognizing improvement may not be permanent.

https://www.diabetes.org/newsroom/press-releases/2021/international-experts-outline-diabetes-remission-diagnosis-criteria

XX

Got lots of comments and questions about some changes noticed on the Dexcom G6 app recently. Turns out, Dexcom has removed what’s called data smoothing from its most recent update. As of August 9th they say

“The Dexcom G6 app used to smooth all but your current reading on your trend graph. With data smoothing, there can be some differences between the G6 reading you see in real time (the white circle) and the G6 readings you see in the past on your graph (black dots). I’m showing a photo here - I’ll post this with the podcast episode for those listening.

 

To avoid these differences, we removed data smoothing from the Dexcom G6 app in the 1.9 release, but the Follow app and Receiver continue to smooth past CGM data. We will remove smoothing in an upcoming Follow app release to match the G6 app, but we don’t plan to remove data smoothing from the Receiver.”

 

These differences don’t affect the real-time glucose data, alarm, or alerts. Honestly, I’m not sure why they’re doing this or why they smoothed in the first place.. but we’ll follow up and try to find out more

XX

Not a lot of answers here, but this is interesting.. apparently, people with type 2 diabetes are unlikely to develop migraines and people who get regular migraines are less likely to develop diabetes. To find out why.. scientists are looking at two small proteins that are linked to migraine and drive production of insulin.

This team from the University of Tennessee says some of the newer treatments for migraines could increase the risk of diabetes because of the use of these proteins. They want to figure out how to prevent that.

 

https://www.fiercebiotech.com/research/mouse-study-shows-how-causes-behind-migraine-pain-can-improve-diabetes-treatment

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T1International is out with results of their 2020 global out of pocket cost survey for people with type 1 diabetes.

Worldwide, one out of every four respondents reported having under-used their insulin at least once within the last year due to high cost.

63.2% of participants reported disruption of insulin supplies and 25.3% reported an increase of insulin prices related to the COVID-19 pandemic.

They’ve conducted this survey every two years since 2016, adding additional questions each year. This time, the Results were published as a research paper in the Journal of Diabetes Research and Clinical Practice, linked in the show notes.

https://www.t1international.com/access-survey/

XX

More to come, including news about a rare form of diabetes, but first, I want to tell you about one of our great sponsors who helps make Diabetes Connections possible.

Real Good Foods. Where the mission is Be Real Good

They make nutritious foods - grain free, high in protein, never added sugar and from real ingredients - I was in Target this week and I saw the new Entrée bowls, I bought the Lemon Chicken and the Lasagna. The Lemon chicken was great! It uses hearts of palm pasta instead of regular noodles which I thought sounded odd but really tasted good. They keep adding to the menu line! You can buy online or find a store near you with their locator right on the website. I’ll put a link in the FB comments and as always at d-c dot com.

Back to the news..

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This is from the UK but I think it’s an important reminder that there are more than 2 types of diabetes. It’s new plan to discover and treat mono-genetic diabetes. That’s caused by a single gene mutation - although the specific gene affected can differ. The condition occurs in two types, neonatal - which can occur within the first six months of life - and MODY that develops later, often before the age of 25. About 2% of all diabetes cases are thought to be monogenetic.. the National Health System in England is forming a new training and treatment program to make sure these patients received the correct treatment sooner.

https://www.theguardian.com/society/2021/aug/30/nhs-england-to-train-staff-in-all-trusts-to-spot-rare-type-of-diabetes

XX

And finally, thousands of people in the path of Hurricane Ida are still without power and possibly need help getting their medication. I want to make you aware of the Diabetes Disaster Response Coalition (DDRC).

This is a coalition of lots of diabetes groups - if you need immediate help or want to plan for an emergency, they have the resources.

Physicians and health care providers can call 1-314-INSULIN to report diabetes supply shortages and request support.  People with diabetes and their loved ones can call 1-800-DIABETES (800.342.2383) is available to support people with diabetes and their loved ones for more information.

https://diabetesdisasterresponse.org

XX

Please join me wherever you get podcasts for our next episode -Tuesday -  we’re talking to the folks from Walmart about their deal with Novo to sell their own brand of Novolog Insulin.. The episode out right now is with MannKind, makers of Afrezza inhalable insulin.

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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