In the News... top stories this week: A second glucose-regulating molecule discovered, CGM use closer to diagnosis helps T1D kids, Lilly discontinues "Journey Awards," study on Dexcom use in hospitals, and why does this concept car share a diabetes tech name?
--
Join us LIVE every Wednesday at 4:30pm EST
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Episode Transcription:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. All sources linked up on our Facebook Page and at Diabetes-Connections dot com when this airs as a podcast.
XX
In the News is brought to you by The World’s Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com.
XX
Our top story.. You know insulin helps regulate blood glucose. Now scientists have discovered a second molecule in the body that seems to do the same thing. It’s produced by fat tissue but uses a different molecular pathway.. so it’s hopeful this could get around insulin resistance. These scientists say the hormone, called F-G-F-1 suppresses breakdown of fat cells into free fatty acids and regulates the production of glucose in the liver. Because it does this in a different way from insulin, they’re calling it a second loop. Very early here but very intriguing.
XX
New study out of Stanford says setting children and teens up with a CGM shortly after a T1D diagnosis.. results in a lower A1C a year later. They looked at kids diagnosed in 2018 to 2020… and compared that group to other children diagnosed four years earlier. In that first group, about 90-percent started CGM in the first month.. in second group it was under 2-percent that started that early. At diagnosis, the children in the newer cohort had higher A1c s. At 6 months and 12 months after diagnosis, the patients in the new cohort had significantly lower A1Cs than the other kids. These researchers say the news is more evidence to get insurers to cover the devices.
https://healthier.stanfordchildrens.org/en/kids-early-use-of-diabetes-technology/
XX
A new risk factor for type 2 mostly affects women, and it’s in about 10-percent of the population. A new study says about one in 10 adults has a lump in their adrenal glands that, though otherwise harmless, increases production of certain hormones that increase the risk for Type 2 and high blood pressure. About 70% of those with them were women, most of whom were 50 years old or older. It’s called mild autonomous cortisol secretion and these researchers say we should start screening for it.
https://www.upi.com/Health_News/2022/01/03/adrenal-tumor-diabetes-blood-pressure-study/2471641237308/XX
XX
After almost 50 years of honoring people with diabetes with anniversary medals, Lilly Diabetes is phasing out the Journey Awards. Awards were given to patients for 10, 25, 50 and 75 years. A Lilly spokesperson confirmed the news to me today.. saying “We periodically need to re-assess and prioritize programs as the environment and our business shifts. We believe our decision will allow us to focus on programs that we hope bring the most value to people living with diabetes.” They encourage people to check out the Joslin Medalist program and I’ll link that up.
Joslin.org/research/our-research/medalist-program-study
XX
Movement on a couple of court cases involving insulin makers. Sanofi lost its appeals court bid to revive patents on Lantus. You’ll recall that last year, Viatris got approval for Semglee, it’s long-acting insulin, which is basically the same thing and is approved for the same indications as Lantus. Sanofi is facing an antitrust lawsuit accusing it of obtaining some 20 patents in an effort to delay competition. Viatris has been knocking out the patents in court.
XX
A federal judge has pared down a class action lawsuit accusing the biggest insulin makers of racketeering. Novo Nordisk, Sanofi and Eli Lilly are accused of scheming together to inflate prices. However, the US District Judge ruled that claims under the racketeering laws of several states (except for Arizona's) must be dismissed… because the laws do not allow claims by plaintiffs who bought the drugs through intermediaries, such as insurance companies, rather than from the drugmakers directly. The same judge did allow these RICO claims to proceed earlier this year in a separate class action against the companies brought by direct purchasers.
XX
New look at CGM accuracy in hospitals, mostly for people with type 2. This study looked at the Dexcom G6 and didn’t measure how it influenced care, just whether the readings were accurate compared to finger sticks. As you’d imagine, the readings were less accurate at the extreme highs and lows, but the researchers concluded CGM technology is a reliable tool for hospital use. The FDA allowed expanded Dexcom use in hospitals less than two years ago, so this is still very new.
https://pubmed.ncbi.nlm.nih.gov/34099515/
XX
Dexcom partners with another new company.. this one is called SNAQ. Snaq is a diabetes app that is designed to track both your diet and your blood glucose… and can give you nutritional info of your food just by taking a photo with your smart phone. Good write up & review on that from Diabetes Daily which I’ll link up. Apparently, it works pretty well! The partnership means all US based SNAQ users can automatically view Dexcom CGM Data together with their meals inside the Snaq App
https://www.diabetesdaily.com/blog/we-tried-the-snaq-diabetes-app-695058/
XX
Hat tip to our friend Nerdabetic who spotted this ridiculous story. LG Electronics introduced a new in-vehicle infotainment concept tailored to autonomous vehicles. It’s designed to blur the distinction between home and car .. This is a car cabin that can turn into a space where passengers work, watch TV, exercise or experience camping virtually. The name? LG Omnipod
It was presented at the Consumer Electronics Show this week. No comment yet from Insulet, the makers of the Omnipod with which most of us are already familiar.
http://www.koreaherald.com/view.php?ud=20220103000636
XX
Before I let you go, a reminder that the podcast this week is all about diabetes in media, a really deep dive into how representation on screen influences those watching. Listen wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.
Next week’s episode will be a little bit delayed.. released either very late Tuesday evening or early Wednesday morning. I’m set to talk to the CEO of Dexcom on Tuesday and I want to get that to you as soon as I can.. rather than hold it. So thanks for your patience on that.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
Diabetes on TV and in movies is rarely anything close to accurate. Turns out, those media misconceptions can be real-life harmful. This week, Stacey is joined by Dr. Heather Walker, the co-author of (Un)Doing Diabetes: Representation, Disability, Culture and Dr. Phyllisa Deroze, who contributed a chapter called “Laughing to Keep From Dying: Black Americans with Diabetes in Sitcoms and Comedies.
Dr. Deroze & Dr. Walker both live with type 1 and both have difficult diagnosis stories that influenced their experiences with diabetes going forward.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
More about Dr. Phyllisa Deroze
More about Dr. Heather Walker
----
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode Transcription:
Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
This week, diabetes on TV and in the movies is rarely anything close to accurate. And those media misconceptions can be real life harmful. Here's one from the sitcom 30 Rock.
Dr. Phyllisa Deroze 0:30
Tracy has diabetes there. And he does this skit where he replaces his foot with a skate. And he's like I'm practicing for when I lose my foot to diabetes. And that is the thing. There was a diabetes diagnosis and the next scene, he's already imagining himself with an amputation.
Stacey Simms 0:49
That's Dr. Phyllisa Deroze, who wrote a chapter in a new book we're talking about this week. The book is called (Un)Doing Diabetes Representation, Disability Culture. And it's authored by Dr. Heather Walker, Dr. Deroze and Dr. Walker both live with type one, and they join me for a great conversation. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show, I am always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. This is our first show of 2022. So Happy New Year, everybody. I hope you're doing okay. Still stressful days for everybody. But hopefully you can kind of come along with me every week, as we talk about what we're finding interesting in the diabetes community.
And I say that because 2021, I decided I was going to focus on technology for the year, I was going to try to do as many episodes as I could, talking about new technology talking to these companies. And I did that although I gotta say the log jam at the FDA made that a little difficult, right? I mean, we thought we'd have a lot more new technology. And a lot of companies will not talk about stuff until it is FDA approved. So this year, I'm going to stay with that because the technology episodes are what you have told me you are the most interested in, in fingers crossed are going to have some approvals pretty soon. But I gotta tell you, I've also decided that I'm going to do shows on just whatever the heck I find interesting. I started this show seven years ago, this coming summer, and honestly, this might be the last year of it in this form. I mean, I love it. I love doing this but seven years is a long time for any project. I have some new things that I'm working on. I'm not sure how much time all of it is going to take. I'm not abandoning the podcast by any means. I want to hear from you too. As we go forward. You know, as the year goes by, I will keep the lines of communication open. We will figure it out together.
This episode does fall into the category of something I am fascinated by and I love to talk about and that is diabetes in media. And by the way separately. Both of my guests this week have bananas misdiagnosis stories, we get to that right out of the gate. Wait till you hear what one of their doctors ended up doing. I have never heard this happening before. It was pretty wild. And we will talk about the book I mentioned that it is (Un)Doing Diabetes Representation, Disability Culture. It is authored by Dr. Heather Walker and Dr. Dr. Bianca C. Frazer. It contains essays by other authors including Dr. Phyllisa Deroze a little bit more about the book in its public description. It says undoing diabetes is the first collection of essays to use disability studies to explore representations of diabetes across a wide range of mediums from Twitter to TV and film to theater fiction, fan fiction, fashion and more. In undoing diabetes Authors deconstruct assumptions the public commonly holds while writers doing diabetes present counter narratives community members create to represent themselves.
And just a little bit more about my guests. Dr. Heather Walker is Associate Director of qualitative research at the University of Utah health. She was diagnosed with type one at age 11 in 2001, and Dr. Phyllisa Deroze began blogging at diagnosed not defeated almost immediately after being misdiagnosed. She found out later with type two diabetes in 2011. And now she has been correctly diagnosed with LADA. Dr. Phyllisa Deroze is also the founder of Black diabetic info after the interview, and it's a pretty long interview. And that's okay. They have a lot of great stuff to say, I'm going to come back I want to tell you about something that happened to me. It's not quite diabetes in media, but it is diabetes jokes. So I want to tell you how I handled something in a Facebook group. But I'll come back and do that after the interview.
Dr. Phyllisa Deroze, Dr. Heather Walker, welcome. I'm so happy to talk to you both. Thanks for coming on.
Unknown Speaker 4:50
Thank you.
Stacey Simms 4:51
So let's start if we could, I mean there's so much to get to and I was so excited to see you both at friends for life and see the presentations that you were doing but which You mind kind of backing up a little bit and kind of letting people get to know you? We could start just tell me a little bit about your diabetes diagnosis story. And Phyllisa, let me let me ask you to start with that if I could.
Dr. Phyllisa Deroze 5:12
Um, yes, I was diagnosed shortly after getting my PhD in English literature. I had moved to North Carolina, I experienced the classic symptoms of hyperglycemia. I had seen a physician who didn't check my blood sugar told me that I just needed to drink Gatorade because my electrolytes were off. A little later I was in the hospital. Blood sugar didn't register. Finally, I think first reading was like 597, or something like that. So I was told I had diabetes, and what type didn't get clarified until I was discharged. When I was discharged. I was told that I had type two diabetes, and I lived with that diagnosis for eight long years, it was inaccurate, I was misdiagnosed. I live with latent autoimmune diabetes in adults. And I was correctly diagnosed and joined the T1D group in 2019. I get this
Stacey Simms 6:06
question. Every time I speak to somebody like yourself who was misdiagnosed like that it happens so often. How do you live with what is really type one for all that time? I mean, I can't imagine you felt very well.
Dr. Phyllisa Deroze 6:20
I did. Okay, after diagnosis, I had a pretty long honeymoon phase, I actually lived about three years with just diet and exercise. I think one thing in the T1D community is that we don't talk enough about honeymoon phases and people who have latent autoimmune diabetes and adults, because so much of the common knowledge about type 1 diabetes is that everyone is insulin dependent. And that's not necessarily true, everyone will become insulin dependent. And that's an important message, because I never thought to have test done until I went into DKA. Again, so I myself didn't know that it was possible to have type 1 diabetes have a long honeymoon period and be misdiagnosed.
Stacey Simms 7:09
Yeah. The more I learned about Lada, it is so similar, but it's so different. There's a lot more to it, I guess, is what I would say, than I had realized for sure. Heather, what is your diagnosis story? When were you diagnosed with diabetes?
Dr. Heather Walker 7:21
So I was diagnosed at 11. And I also sort of have a misdiagnosis story. So I had diabetes, and I was in what I assumed to be a honeymoon phase for three months before my diagnosis actually came around. Because I was seeing a physician at the time who looked at me, skinny white girl, whose parents were really afraid because she kept losing weight, who was just about to hit puberty, and he thought eating disorder. No matter how many times I told him, I was eating everything in sight and drinking everything in sight. That's still what he firmly believed. Luckily, at about three months after I started coming in to see him for this and for the symptoms, he went on vacation, and I got to see his pa instead. And his pa John, you know, it's so funny. I don't even remember his last name. But just he's just warmly John to me, right? He just looked at my chart, and he knew right away, it's like, oh, you have diabetes, you know, so calmly, and I remember that freaking me and my mom out. We were in the appointment. It actually was my dad. But still, the first thing that we did was went and got me a doughnut because I think my dad was like, alright, well, maybe this is it. You know, he'll never eat another doughnut. Yeah, like, we really don't know about this, we don't know what's gonna happen. And so they didn't do a glucose tests on me. They just drew blood. So we didn't know right away anyway. And then it was like, you know, the next day, they called and said, You need to come to the hospital and for US history.
Stacey Simms 8:45
I'm guess I'm gonna get ahead of myself a little bit here. I don't want to start drawing conclusions too early in this interview. But it is interesting how both of you were misdiagnosed. Somebody else made an assumption, because of how you present it to them. I've got to imagine. So Heather, let me ask you. And then Phyllisa, I want to ask you the same question. But other how has that stuck with you? I mean, you you kind of set it so matter of factly they're like, Hey, he assumed I had an eating disorder. Did you kind of carry that with you?
Dr. Heather Walker 9:11
Oh, yeah, absolutely. I think I got a huge chip on my shoulder. From that. I mean, there's something about you know, being 11. And being in a world that already doesn't take you seriously, and then have a life threatening disease thrown at you. And your doctor doesn't believe what you say, even before diabetes. And Stacy, I've heard on episodes of your podcast you talking with with teens about or people who were teens with diabetes, about how fast it speeds your life up, right? Like you don't really get to have a childhood you don't really get to be a teenager and like, you know, carry on with reckless abandon because you just can't because there's all these safety things that you need to take into account. And so, but even before diabetes, I was kind of like that, like I was, you know, a 30 year old and a 10 year old body. I've been the same Age since then until now, but that, for sure gave me a big chip on my shoulder. It made me want to like, look into everything and see as it's happening to other people is like what's going on with this diabetes stuff.
Stacey Simms 10:13
Phyllisa, I'm curious for your experience too, because as you you kind of already said something interesting, which was like, Well, I didn't know how were you supposed to know? Right? The doctor supposed to know.
Dr. Phyllisa Deroze 10:23
Right. What's interesting is that when I was told that I needed to look into LADA because I had given a speech in Dubai to a roomful of doctors from the MENA region, Middle East and North Africa. And I was simply telling them my diagnosis story, very similar to what I share with you is a little more in depth, but pretty much that was the basics. And you know, I'm 31 years old at the time. And so during the q&a, some of the physicians from Tunisia, they raised their hand, and I was like, yes, they were like, well, your story kind of sounds more like LADA than type two. Are you familiar with it? And I said, not really. I mean, I know Cherise Shockley has it, but I don't know any more details than that. And it was at the lunch afterwards, one of the physicians came up to me and she said, you really ought to look into seeing if you have a ladder, and don't stop until you get the answer. And that kind of haunted me like, don't stop until you get the answer. But I just thought it was a simple request. So I asked my Endo, I got told no, I asked three months later, if I had ever been tested, the answer was no. Well, can I get tested? No. I saw a second opinion. No, you have type two. So I definitely think their view of me being an African American woman living with obesity played a lot into the constant denials. It took me over a year, another decay episode, and begging my gynecologist to run type one antibody testing for me in order to get it. So it wasn't easy. I literally had to not stop until I get the answer.
Dr. Heather Walker 12:11
For Phyllisa, it was your OB they finally gave you the testing you wanted?
Dr. Phyllisa Deroze 12:15
Yes. Because I told her, I can't get an endocrinologist to run this test. I know I'm in decay, a I'm losing weight rapidly. And she listened to me and she said, Okay, she said, I don't do endocrine, I do you know, OB GYN. So we were literally on her computer on Google trying to find the codes to request the testing. And so she was calling around, what do I put in to order this? And I remember when she called and she said, Listen, you know, this is out of my field. But come get these results, because your endo was going to need to see them. That was all on me. I got the results. I just remember seeing the get 65 should be below five. And mine was greater than 7500.
Stacey Simms 13:05
Oh, I'm almost speechless. I mean, I'm not I'm never actually speechless. I came in less than that happened. But the idea that you have to work so hard to get those answers, I've got to assume just like with Heather, that had to inform not only your experiences going forward, but the way you help other people because you both are extremely active in the community. You You're both very prolific writers, you both have, you know, studies and presentations that we're going to talk to, but Felicity, that whole experience with somebody else saying, Well, I think you have lotta to I got to get answers for myself to finally getting them. When you look back on that, how does it inform how you talk to other people about
Dr. Phyllisa Deroze 13:43
diabetes? I tell people definitely to be way more assertive than then imagined. Like, I honestly did not think it would take me constantly asking for the results. I thought it was like a simple test. I mean, you're testing my cholesterol, you're testing my a one C, like you're already getting a vial of blood, like just check off one antibody. So I thought it was something simple. And it turned out it was not, which was very frustrating for me. Because like in that I realized my education level didn't matter to them. I was literally like you are African American living with obesity. And that was what I believed to be their motivating factor to deny me testing. And what's so problematic about that, in addition to everything else you can imagine is as my physician Wouldn't they want to know that they're treating the right condition. Yeah, I'm asking so my records actually have a note from my endo saying, Melissa asked multiple times for type one antibody testing, and I denied it
Stacey Simms 14:55
literally says I denied it in your file.
Dr. Phyllisa Deroze 14:57
Yes. Wow.
Stacey Simms 14:59
I'm just sorry. I got to ask, did he show that to you as an apology? Or did you sit there in the room while you made him write it?
Dr. Phyllisa Deroze 15:05
What I did was I refused to leave the appointment. I love it until there was this moment of record, like, I need you to recognize that I have been asking you for over a year for this test. We just need to come to that because it was like, Oh, you need insulin, let's go. And, you know, I was kind of being escorted out of the room. And I said, No, I'm literally not going to leave this chair until we have this conversation. And so I didn't know that my endo would put it on my records. But I definitely refused to leave until that conversation was had, they did apologize. And there was a note and my files.
Stacey Simms 15:47
It just didn't have to be that hard. This could have been an episode in and of itself. Want to make sure to get to that the research or the publications that sparked my interest here.
Right back to our conversation and right was like kidding about the diagnosis stories, and then her doctor putting in her chart that he was wrong. Oh my god.
Alright, Diabetes Connections is brought to you by Dexcom. I want to talk for a minute about control IQ, the Dexcom G6 Tandem pump software program. When it comes to Benny's numbers, you know, I hardly expect perfection, I really just want him happy and healthy. And I have to say control IQ, the software from Dexcom. And Tandem has completely exceeded my expectations, Benny is able to do less checking and bolusing. And he is spending more time in range. This is in a teenager, a time when I was really prepared for him to be struggling, his sleep is better to this is great for all of us basal adjustments possible every five minutes, the system is working hard to keep him in range. And that means we hear far fewer Dexcom alerts, which means everybody is sleeping better. I am so grateful for this, of course Individual results may vary. To learn more, go to diabetes connections.com and click on the Dexcom logo.
Now back to the interview. And we are moving on to Dr. Walker's book. Heather, tell me about the book that's coming out.
Dr. Heather Walker 17:14
Okay, I'm so excited to be talking about this. So you might hear that excitement in my voice. So it's awesome. The title of the book is called undoing diabetes representation, disability culture, that's a full title. And it's going to be released very soon, by the end of the year, we hope it's a collection of essays that looks at diabetes in a new way, the volume or the volume as a whole. You know, it points out that all the stereotypes of diabetes that the public really buys into are like maintained through a lens of individualism, our society looks at diabetes as a problem of the individual person right of their choices. And so to respond to that public tendency, right to like focus on the individual, all of our authors in the book do the opposite. So in the collection, they ask questions like, What do individualistic stereotypes reveal about the social conditions for the diabetic person? So it like flips it on its head? And also what do they conceal, right? What is stereotypes hide? What do they prevent us from seeing? And how do these like harmful narratives, these harmful assumptions, these stereotypes that just break down our community? How do they reinforce ideas that the public already has, for what constitutes like a normal or a good body, which is just like, as a person who's living with diabetes, this makes me so excited. And then I'll just add one final thing about the book, which is our collection is really unique in that we use disability studies frameworks to unpack all of these questions. What are disability studies? So this ability studies is a field of study that looks at the social conditions of disability. So how is disability perceived in society? How is it represented on the screen, and all of those types of things. And so we have frameworks in the field that we use, it's kind of imagined, like a camera lens, right? That's kind of like a framework and the camera lens has a filter on it. And so when we look at this movie, or this film, we're looking at it through a specific lens with a specific filter. In our book, all of our authors are looking at different types of media, through these disability studies, frames or lenses, and sort of seeing how they operate in society and what they do, and then poking holes at what it does. And every chapter is brilliant, and Phyllisa is going to talk about hers, but as a volume, like I could not be more proud of this collection and all the work that it does. And all of like the change and the shifts it's going to make for readers.
Stacey Simms 19:43
It's so interesting to me because of the mediums that you use so let's let's ask Felicity if you want to if you could talk about what you presented friends for life, what you talked about you were looking at TV shows, right and not unfortunately not more current ones which sometimes get it right.
Dr. Phyllisa Deroze 19:59
Um, yeah, I was the title of my chapter is laughing to keep from dying black Americans with diabetes in sitcoms and comedies. So I was looking at television shows as well as movies, and focusing on how those representations make meaning of diabetes within African American communities. Part of this started, when I thought about the first time I heard you have diabetes, and I was in the emergency room, my first thought was, I'm going to die. Like that. Was it? Like, I just thought like diabetes meant death? And when I started unpacking that, to find out where did I get that messaging from? Because no one in my family has diabetes. I didn't personally know anybody with diabetes. It really came from television and film, and of course, our media. And I thought it would be really nice to look at some of these classic movies and TV shows that are very popular in African American communities to see what story is told when you focus on the diabetes characters.
Can you talk about some examples?
Yeah. So for example, like Soul Food is one of those classic staple in African American film, a memory just like the color purple is something that people cite quotes from all the time. But when you look at Soul Food, it really stems from Big Mama who has diabetes. We understand this because she burns her arm on a stove. And a couple of things later, she passes away, she has an amputation and then a stroke. And she's no longer with us. The Big Mama character also comes up in Tyler Perry's plays and his films in his television shows. And again, these are staple matriarch characters who have diabetes. Now Madea lives on because that's a part of, you know, Tyler Perry series, but she has diabetes Boondocks I look at and of course Blackish. So blackish, I would say is probably where we first see the the image turn, where we first see a character with diabetes, checking their blood sugar, and all the other stuff we don't. And so what that tells us is that diabetes is going to cause either a slow death or quick death, perhaps an amputation, if you're familiar with 30, Rock. Tracy has diabetes there. And he does this skit where he replaces his foot with a skate. And he's like I'm practicing for when I lose my foot to diabetes. And that is the thing, there was a diabetes diagnosis, and the next thing, he's already imagining himself with an amputation. So when we look
Stacey Simms 22:59
at something like this, what do we take from it now? I mean, we you can't go back and change those representations. What do you want us to kind of learn from them.
Dr. Phyllisa Deroze 23:08
But I would ideally like for the film industry, to change their portrayal of characters with diabetes, I mean, all characters, not just African American ones. But last year, there was the release of the Clark Sisters first ladies of gospel biopic on lifetime. The Clark Sisters are like a staple in African American culture. They were these gospel singers that were absolutely phenomenal. The Lifetime movie of them ended up being the highest rated Lifetime movie and four years. This comes out last year, the mother has diabetes. She is seen not taking her medication, not caring about her diabetes. And of course, there's all these tragedies that happen. And the thing is, when we don't see African Americans using CGM technology, insulin pump technology, we don't see checking blood sugar. What happens with those messages is that it becomes the common assumption. So when someone goes to the doctor, the doctor may think, Oh, well, black people don't check their blood sugar. And so then that begins to impact the individual prime example. I was in a setting once. And a woman said, Oh, I didn't think black people ate vegetables. What? Yes, yes, literally said this. And I was just so floored, but I thought, okay, she didn't think black people ate vegetables. And so I'm wondering like, what images you know, is she being fed? Right? Yeah. came from so the thing is, is we have to look at our television and our film, not just as sources of enjoyment for some people, but also as information that provides an understanding about certain people. So literally in all of the films and television shows that I look that there were probably two that showed the African American character with diabetes, actually living a rather fruitful life. Outside of that it was amputation and death. And so when someone is diagnosed with diabetes, like I was, and I didn't know anyone with diabetes, instantly, the first thing I thought about was death and dying. And that association that comes with it, when I hadn't seen people living well, with diabetes, I just want to say this. When I was first diagnosed, I went to Barnes and Nobles sat down in a bookstore with one of Patti LaBelle cookbooks, and I flipped to a page and she said, in this book, I had diabetes, but I wasn't going to let diabetes have in me, and I cried, right there in the Barnes and Noble, because that was the first time that I had ever seen or read or heard someone who looks like me diagnosed with diabetes, and they were determined to continue living their life. Like if you want to see that image, where do you go? Because our television and our films are not that place. And that's also the fertile ground for which black diabetic info on my website started and my blog, because I didn't know where to go for that. Like, I got it in Patti LaBelle cookbook, and I cry. But then where can I go to see it again? Yeah, didn't have an answer. Heather, I
Stacey Simms 26:53
want to come back to you and ask you something I saw you posted about on on Twitter. A couple of months ago, Pixar posted a teaser for their new movie turning red, which I think comes out in the spring. And there's like a split second shot of a kid wearing some kind of what looks like diabetes device. It's, you know, an insulin pump or a CGM. And they confirmed it. I actually talked to somebody behind the scenes at Pixar and fingers crossed, we'll have them on the show in a couple of weeks. But it is a diabetes. I'm so excited. But it is a diabetes device. But you were pretty adamant about one point, would you mind sharing that? And why? Sure.
Dr. Heather Walker 27:30
So when I saw that, you know, I came late to the show. Let me preface with that, right. Like, by the time I saw that trailer, the community was abuzz. Like they everyone was so excited. And what I saw was, Oh, my goodness, we see a character with type 1 diabetes. And as someone who is completing a chapter for a book of essays on representations of diabetes, you know, my antenna went up when I saw how the community was claiming that. And I just thought to myself, This is not a representation of type 1 diabetes, this is a representation of diabetes, because people with type two can and should have access to those devices as well. And so for the type one community to be exclusive, in this moment, in this grand opportunity for all of us to celebrate together, really sort of broke me down in a way, you know, I was like, Why? Why can't we just keep this open? Why can't we make this a win for everyone? Instead of saying, quote, unquote, type two people don't use these devices? And I think that the reason why it was like it was like a jab in my heart is I think that that claiming does something in society, right? It, it functions to show us that large groups of the diabetes are the type one community feel like, maybe type two diabetics aren't using that technology, because they're the ones who don't care. And they're the ones that the stereotype is about. And so that shows me that we have pockets in our type one community that buy into the stereotype just like the public does.
Stacey Simms 29:06
I'm looking at the description of the book in terms of the different mediums you use Twitter, to TV to film to theater to fiction, fan fiction.
Dr. Heather Walker 29:13
Yeah, we have a chapter, whatever author of your chapter covering a segment of fan fiction, and it's wonderful and actually, that author and she discloses in her chapter as well, so I'm not outing her. She also lives with diabetes herself. And I'm pretty sure she has a physical science PhD. So this genre and this discipline is new for her and she just like, Oh, she did such a great job having us understand how diabetes is being pulled into fanfiction. Alright, we
Stacey Simms 29:46
now should have set this up better if you're not familiar, and I'm going to do probably a terrible job of describing this. If you're not familiar. Fanfiction is stories, poems, pictures, it's fiction, written by people who are Fans have a genre or fans of a certain bunch of characters, and then they kind of make up their own stories using the established characters most of the time. So in other words, you love Harry Potter, you write yourself into Harry Potter or you write a different adventures that the characters might have had. And it's accessible to pretty much everybody. Is that how I feel about fanfiction? Yeah, I
Dr. Heather Walker 30:18
think it's kind of a, you know, once you get into it, you know where to look. You can probably Google it. And you know, I'm not even really in the world of fanfic, full disclosure and transparency. But I feel like I want to beat now that I've read, I've read that chapter. So
Stacey Simms 30:34
these are characters people are writing about that loop with diabetes, or they are the just bringing diabetes into exactly as it sounds. It sounds silly, as I'm saying it out loud. Like I'm explaining it. I'm trying to, you know, hit it over the head to the to find a point. But just to be clear,
Dr. Heather Walker 30:48
yes. So I think in the pieces that this author talks about in their chapter, it's situations where the characters themselves do not have diabetes, and the fanfic authors write them having diabetes. Oh, so they add that to their character.
Stacey Simms 31:04
You know what we were doing that a long time ago? Because I don't know if you know, Heather, and Phyllisa, but Bob, the builder definitely has diabetes, because why else? Would he have that big belt around his equipment? Because that's where his insulin. So anytime we saw somebody on screen with that, he was like, Oh, he's got diabetes. I didn't mean to interrupt Heather. But that clarifies it for me.
Dr. Heather Walker 31:23
Oh, yeah. That's a perfect example. Right is imagine that we had a fanfic author who loves Bob the Builder when they were a kid. And now they're writing the whole story about Bob, the builder and his diabetic life. It's wonderful. The book itself,
Stacey Simms 31:37
is this something that's accessible to people? And I asked that I mean, is it more of an academic book, tell me a little bit more about that.
Dr. Phyllisa Deroze 31:43
So one of the things that I like about the book is that it's assessable. For a large reading audience, if you are a casual reader, you can get through it, if you are an academic, you can get through it. So it's not laced with academic jargon. But again, we are using theoretical frameworks, but in a language that is accessible to everybody. So that's one I definitely enjoy about the collection, is there something in there forever?
Stacey Simms 32:13
And that's a great point, because I think we do get a little nervous about academic type books, Heather, right. I mean, it's, it can be a little scary and off putting it away.
Dr. Heather Walker 32:21
Yeah. And I'll just add, you know, we have, so we have several authors who are like myself, and Phyllisa, who are scholars and community members, which is very nice, and just like really brings it home. And so, you know, you kind of know, as a community member, that you're going to get authentic pieces by people who are living with this, in addition to having a couple of us who are scholars and committee members, we do have chapters from community members, from activists who don't have their hand in academia at all, and they're writing about their personal experiences. And, you know, they're still talking about representation in different media, but they're doing so from their lens existing in the community existing in the world with diabetes. And if nothing else, although I, I would also say what, you know, Melissa said was true, all of them are accessible, but especially those that are coming, you know, from the mouths of babes that are coming from our community members, who, who many people who do pick up the book already know,
Stacey Simms 33:20
before I let you go, let me let me pose this question to each of you in kind of a different way. And that would be you know, full. So you mentioned blackish, being a bit of a turning point, the show where people are shown, you know, a character shown checking blood sugar. I'm looking back over the last year and thinking of a more accurate depiction of diabetes, or at least type one with the Babysitter's Club on Netflix with we'll see with Pixar is turning red, but with Greenland, you know, written by someone who's married to Greenland, the movie Written by someone who is married to a person with type one, do you think things are getting better? And and I would ask you, as well to include the black community, because we don't talk about that enough. You know, I mean, I'm trying to think if all of those I mentioned they did not feature people of color. Do you think it's getting better? I mean, what would you like to
Dr. Phyllisa Deroze 34:06
see, I would like to see more diversity as we get better in the American film industry. When I look at all the films that I studied, type 1 diabetes is grossly under represented like none of these characters have type 1 diabetes, which again, if you think about myself, 31 years old, being diagnosed, I never knew type 1 diabetes could be an option. I'm still not seeing African American characters using technology wearing CGM. Often when I'm out in public. People are asking me about my devices. It's the first time you're seeing them. I'm explaining insulin pumps. And so while things are getting better, I would say within shows, television shows and films that are popular within African American characters. Progress is about Very slow on that. And
Stacey Simms 35:01
Heather, from where you stand. Could you share a little bit about what you think is going on in media? Are we getting better?
Dr. Heather Walker 35:07
Yeah, I think Phyllisa what you're speaking to right is incremental ism. It's like we are getting better slowly, like painfully, slowly, bit by bit. I mean, I'm inclined to say yes, only because the number of representations that we're seeing are increasing. But, you know, I'm hesitant at the same time to say yes, because we still have to ask, okay, if we even if we have more representation, are they representations that are doing good for diabetic people in society? Right, like, not necessarily, Are they accurate? Or are they you know, a direct portrayal of what people experience? But what is the public taking away from that representation? Like, what are they leaving that with? And if we have a lot more characters all of a sudden who have diabetes, but the audience still thinks, Okay, well, diabetes is still what I thought it was, right? It's like overweight people over eating, making bad choices not exercising? If that's what they're leaving with, then the answer, of course, is no, we're not making progress, even if we're having more characters. And what I find is, what I think we would need to make really big change would be to centralize a character with diabetes instead of making them a sub character, right? Yeah, like for the baby sitters club. And Stacey is not a new character with diabetes is has old, right, like we've known that Stacey has had diabetes for a long time, it just wasn't being produced at the quality it's being produced at. So that's not really even a new one. But we do have new ones, like there's a just a year and a half ago, or so there was a new series called Sweet magnolias. And one of the characters there has, or is about to be diagnosed with diabetes, and it's the same, it's the same story. It's like, you know, if you don't fix your habits, you're gonna get diabetes, and you're gonna die like your mom and all these fear tactics. And so and I really want to be hopeful, Stacy, I really want to be hopeful and say, Yes, we're headed in the right direction. But I just don't know i We need people in the writers room with diabetes, and other health conditions and disabilities, to have a direct voice and call things out before they're produced.
Dr. Phyllisa Deroze 37:19
I agree 100%, we have to be in the room. Because some things they don't make sense. For example, blackish, you do see him check his blood sugar. However, once he puts the strip in the meter, he starts talking to his wife, and anyone who knows how to use a meter knows that you have about 30 seconds before you have to put a drop of blood on that thing, or else you've lost it. So even little things like that.
Stacey Simms 37:46
I had indicated that was the last question, but I got one more. And that would be and II feel free. Either one of you jump in? Or both? What can the community do? You know, sometimes I feel like, you know, I stopped correcting people online a lot of the time unless it's really egregious, you know, but if they make a joke, or there's a hashtag diabetes with dessert, or things like that, like I'm tired, you know, and then you have no sense of humor, you know, gosh, what can we do to try to fix this? Or what can we do to to improve the situation?
Dr. Phyllisa Deroze 38:15
I think, this research, this book, this podcast, these conversations are so important. So for example, prior to writing my book chapter, I didn't see anything talking about the representation of African American characters in television and film. Whenever I talked about diabetes characters, there was maybe the one mention of soul food, but like, there was a dearth there. So this book chapter hopefully helped spark the conversation in wider circles. And so by talking about it more, and rallying around these things, hopefully, the attention like first recognizing that there is a problem, and then getting think tanks together to talk about them is probably the best plan of action.
Dr. Heather Walker 39:06
I love that. And I would just add, you know, I think what the community needs to prioritize is inclusion, right? Like, we need to give up on being exclusive, especially in the type one community, and we need to open our doors to people with type two people with Ladda. People with all like, there are so many different types of diabetes, that even saying type one and two is, is exclusive. I really believe that if we can do that, and if we can elevate the voices of people with diabetes of all types, who are also people of color, then we'll make a lot of progress in our community because we'll start seeing those perspectives that we've been missing that make us as a community really limited to our own perspective. To me, that's the only way to do it. I love the idea of a think tank Phyllisa I think that's brilliant, and just absolutely, and I'm sure you would agree needs to be diverse, right? Like it can't Be a bunch of like, white people. I don't know. There's a lot we can do. There's a lot.
Stacey Simms 40:08
Thank you both so much for joining me. This is amazing. I'm so thrilled to have you both on the show, you've got to come back on there. We just kind of scratched the surface here. So thank you for spending so much time with me.
Dr. Phyllisa Deroze 40:18
It's a pleasure. Thank you for having me.
Dr. Heather Walker 40:21
Yeah, this has been so fun.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 40:34
More information about my guests and about the book on diabetes all at diabetes connections.com. As you know, every episode has its own homepage with transcriptions and show notes and all that good stuff. The transcription started in January of 2020. And we're working our way back here in there, hopefully filling in all the blanks. But right now, not every episode before 2020 has a transcription.
And I should tell you just I don't want to get ahead of myself here. That Pixar movie that we talked about turning red. Since our conversation, they put out another trailer and it showed more diabetes gear, another child in the movie is wearing a Dexcom. So it looks to me I mean, really can't tell yet. But it looks to me like one kiddo has some kind of pump. And another kiddo has a Dexcom. So as I said, I had a contact at Pixar. And I've got another one now. And it looks like there might be an actor, a voice actor in the movie who has diabetes. So we're to sort this all out. And I should be able to have somebody on about this. I don't want to over promise. But the folks at Pixar have been really receptive. So that looks like they won't do it too far in advance because the movie comes out in March. So as we get closer, I'll keep you posted for it.
And I had mentioned a story before the interview about not necessarily diabetes in media, but about jokes. And I don't know about you, but years ago, I was on high alert for diabetes jokes, you know, I can't eat that, or the the hashtag of my dessert is diabetes. And I don't know, I got burned out. And I don't talk about it as much. I don't police it as much, certainly, but I couldn't help myself last week, at Christmas, I'm in a group. It's a very clever group. It's called fatten the curve. If you want to join it. It's a public group, a friend of mine in the Charlotte area started at the very beginning of COVID. Obviously, it's a play on flatten the curve. And as you would expect fatten the curve is all about food. And it's just become a place where people who cook and eat like to share their photos. And somebody posted around Christmas time, you know, it's my diabetic coma, and then all of this food. So I kind of did the do I want to go to I want to do this, or I want to get this person's face. So I just very nicely said, Hey, diabetes jokes are never cool. Not sure if you thought about that. But hey, the food looks absolutely delicious. You know, hope it was as good as it looked or something nice like that very casual and breezy. Just like Hey, dude, not cool. But moving on. And there's a couple of other people in the diabetes community who have joined that group, but it's not diabetes, it's just food. But you know how it is when when Facebook shows you something people, you know, jump in. So other people commented like, yeah, Stacey's right? Please think twice. And this guy apparently lives with type two posted like a non sequitur about his scientific studies and stem cells and all this stuff about diabetes. He did, obviously, not really sunk in I don't think, but he didn't respond negatively. And I just said, You know what, fine, I'm moving on, right?
But then a couple of days later, somebody else popped in, it was like, nobody can make a joke anymore. You're too sensitive, and why we're just too easily offended. And that's when I was like, Alright, now I need to respond. So I very nicely, I think it was nice. You know, I wrote a response. And I said, Hey, you know, once the guy said he had diabetes, you'll notice I didn't clap back, I didn't get nasty. We are all entitled to say whatever we want. But it's important to understand that what we say does have meaning and impact. And as you listen, I know, you know, all this, I did the standard. When we joke about diabetes, we don't do this with other conditions. We don't talk about a cholesterol coma, or a high blood pressure problem when we're eating big meals like this. Why is it only diabetes? And did you realize that actually, you know, the blame and shame that can be encountered here prevents people from seeking treatment or makes them feel like it's all their fault, and nothing they do will matter. I posted all that waiting for the response. There was none, which I'm really glad about. Because I don't want to argue I just it's exhausting. But everyone's not something like that pushes my buttons and I have to save something. Hopefully that group will just go back to posting yummy pictures of food because it's been two years and we haven't had any issues like that. I mostly post pictures of what my husband cooks. Because I don't like to cook and what I do cook isn't really Facebook, really.
So I guess we're often running for 2022. We are back to the Wednesday in the news episodes. I hope you'll join me for that either live on Facebook, YouTube or Instagram, or as an audio podcast which comes out on Fridays. Thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here soon, in a Couple of days until then, be kind to yourself
Benny 45:07
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
Our top stories this week include Medicare further expanding CGM coverage, Beta Bionics has an iLet update, ADA announces new Standards of Care, a new study looks at using Fitbits to predict the risk of type 2, and more!
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode transcription below:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast..
XX
In the News is brought to you by The World’s Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com.
XX
Our top story.. another adjustment for CGM coverage under Medicare. All types of continuous glucose monitors will now be included. The difference here is that it includes CGMs that aren’t approved for making decisions about insulin dosing – at this point, that’s really just the Medtronic brand. This follows another decision in July that covered CGM use with any insulin – including inhaled insulin - and got rid of the four times per day fingerstick testing requirements. The new rule goes into effect in two months.
https://www.healio.com/news/endocrinology/20211222/cms-expands-medicare-coverage-for-all-cgms
XX
The American Diabetes Association is out with its annual Standards of Medical Care in Diabetes. Notable updates include: Screening for prediabetes and diabetes beginning at age 35 for all people;
Changes to gestational diabetes recommendations regarding when to test and who to test. Updated recommendations on technology selection based on individual and caregiver considerations, ongoing education on use of devices, continued access to devices across insurance companies, support of students using devices in school, use of telehealth visits, and early initiation of technology.
https://www.prnewswire.com/news-releases/latest-ada-annual-standards-of-care-includes-changes-to-diabetes-screening-first-line-therapy-pregnancy-and-technology-301448533.html
XX
Little bit of news from Beta Bionics, makers of the iLet Bionic Pancreas System. They’ve completed a randomized controlled trial for their insulin only pump.. this included 440 adults and kids over the age of 6 with type 1. The iLet is different in that you only put your weight in and the system learns you. No carb ratios or basal rates. You do still announce meals, but no carb counting.. just meal size. Public presentation of the clinical data is expected in the first half of 2022. They’re now enrolling into the screening protocol for the next step, the pivotal trial for their Bihormonal pump that would use insulin and glucagon.
https://www.globenewswire.com/news-release/2021/12/22/2356645/0/en/Beta-Bionics-Announces-Data-Lock-of-the-Insulin-Only-Bionic-Pancreas-Pivotal-Trial-and-Enrollment-into-the-Screening-Protocol-of-the-Bihormonal-Bionic-Pancreas-Pivotal-Trial.html
XX
You probably know there is a terrible shortage of endocrinologists in this country.. an estimated 80% patients with diabetes use their primary physician’s office for their diabetes care. There’s a new push for more endo fellowships.. These 1-year programs, with funding and accreditation, train interested family and internal medicine clinicians in intensive diabetes management. There are several in existence but there’s a new white paper on this getting a lot of buzz. However, critics say it would be a drop in the bucket and couldn’t graduate enough endos to make a difference. Everyone agrees that the problem needs to be addressed.
https://www.healio.com/news/endocrinology/20211229/endocrinologists-propose-diabetes-fellowship-programs-to-address-growing-gap-in-care
XX
Interesting study on the use of health wearables and changes in blood sugar. Wearables here refers to Fitbits, so they’re tracking activity not blood glucose. These researchers say their models can accurately identify changes in glycemic control among prediabetic adults, and this could be used to better allocate resources and target interventions to prevent progression to diabetes. Interestingly, the wrist wearable seemed to work better for people than the waist kind. Not a big surprise when you think about which is more popular for use outside of studies. Anybody use a waist wearable anymore? Let me know.
https://www.nature.com/articles/s41746-021-00541-1
XX
And finally.. a Tennessee man who’d never heard of JDRF just won a 2021 Ford Bronco in that organization’s long-running fundraising contest. Every year JDRF and Ford give away the truck – Henry Ford’s great grandson has T1D – and they’ve raised about half a million dollars with the contest. Derek Bonzagni entered the day before it closed this year.. he learned about it through an online forum for people who love Ford Broncos – not the diabetes community.. AND.. he and wife just bought a Bronco for her – before he won. So now they match.
https://www.healthline.com/diabetesmine/jdrf-ford-bronco-diabetes-sweepstakes#6
XX
Before I let you go, a reminder that the podcast this week is with Peloton star instruction Robin Arzon – she’s got great motivation to get us moving whatever your fitness level. Listen wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.
Next week we’re talking about diabetes in media with the authors of a new book. Hoo boy..
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
Peloton instructor Robin Arzon was diagnosed with type 1 as an adult, when she was already an endurance athlete and marathon runner. After her diagnosis, she was determined to keep those incredible fitness feats coming. Arzon is now Peloton’s VP of fitness programming, an ultramarathoner, a best-selling author, a new mom, and more. If you’re looking for some new year fitness inspiration, she’s got you covered.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode Transcription Below:
Stacey Simms 0:05
This is Diabetes Connections with Stacey Simms.
This week, peloton, instructor Robin Arzon was diagnosed with type one as an adult when she was already an endurance athlete and marathon runner. after her diagnosis, she was determined to keep those incredible fitness feats coming.
Robin Arzon 0:24
I really have had to treat myself kind of like an experiment like get curious and just see and trust that even on the days that aren't my best, I'm trying my best and my best is good enough
Stacey Simms 0:35
Arzon is peloton’s vice president of fitness programming an ultra marathoner, a best selling author, a mom, and more. If you're looking for some new year's fitness inspiration, she's got you covered.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I'm always so glad to have you here, you know, we aim to educate and inspire about diabetes with a focus on people who use insulin. this time of year I always seem to have a fitness interview, right? That makes sense. It's the new year we're making resolutions. We're getting motivated. So you know, take a look back in years past I talked to Chris Rudan from the Titan games. I talked to Eric Tozer, who did seven marathons on seven continents in seven days, you know, stuff like that. But you don't have to have these incredible achievements, these these incredible goals. You know, this to be fit to stay healthy. I mean, I'm certainly never doing an ultra marathon. It's not one of my goals, especially as I get older, I want to stay moving. That's really important to me. So well, somebody like this week's guest Robin Arzon isn't I'm sorry, Robin isn't going to motivate me to ever run a marathon. She is going to inspire me to try a little more to do some different things. And I hope she inspires you in the same way as well. Whatever your fitness goals are for 2022
I have a story that I want to share about something that happened recently with me and Benny, it isn't really about new year’s resolution. So I'm going to keep it till the end of the interview. I'll come back and tell you he challenged me to do some things kind of an empathy exercise about type one, I failed miserably. That's the spoiler. So we'll get to that in a little bit.
This week's interview is one of my shortest ever I had very limited time with Robin. So I decided to not ask her about her diagnosis story. I skipped a couple of questions that I would usually ask, but in case you're not familiar with her, I wanted you to learn more. So here is a quick explainer that she gave beyond type one a few years ago, and we're playing this with their permission.
Robin Arzon 2:32
I am a reformed lawyer turned ultra-marathoner. I'm head instructor at peloton cycle as well as vice president of fitness programming. I'm on the Leadership Council beyond type one. I was an endurance athlete Well, before I was diagnosed with type one diabetes, I was diagnosed in February of 2014. So only a few years ago, as an adult, I was in my 30s when I was diagnosed. And it's been an interesting little dance I'm doing with my pancreas these days.
I had just returned from a trip to India. I was in India for about three to four weeks with my mom and my sister. And when I came home back to New York City, I thought I had jetlag or something like my body just felt really sluggish. And I had extreme thirst. That was the number of extreme thirst and frequent urination. And that was the number one thing that really was strange, because I know it wasn't dehydrated. And as an athlete, I kind of could tell immediately that something was off with my body. I had an awareness of type 1 diabetes, but certainly not on any kind of medical or even practical level. And I definitely didn't know how to how to live with it. That was actually my very first question after I was diagnosed was how am I gonna run 100 mile races? And that was a question pretty unfamiliar for my endocrinologist and so then I want an immediate search for all the technology that would allow me to train uninterrupted. I actually had a half marathon two weeks after my diagnosis and I and I ran it. And I think I was on a pump within a week that I had a Dexcom within 14 days.
Stacey Simms 4:27
Robin was diagnosed in 2012. She's now peloton vice president of fitness programming. She and her husband had a baby in 2021 and January just a couple of days from this episode going live. She is publishing a children's book and you will hear her talk about that. There is a video of this interview over on the Diabetes Connections YouTube channel if you want to watch I will link that up in the shownotes.
Full disclosure. The reason I had limited time for this interview is because Robin is on a media tour courtesy of Gvoke Hypopen so you will hear a lot about that in this interview ended agreed To do this, I also agreed to post information about Gvoke in the show notes which I have done. If you've listened for a long time, you're probably tired of hearing these disclosures. But if you're new, it's very important to me that I'm open and honest about what you hear on the show. And I really thought the tradeoff of hearing about Robin’s experiences and advice was worth it.
Robin, thank you so much for joining me and spending some time with me and my listener. So how are you doing today?
Robin Arzon 5:29
I'm great. So nice to speak with you. Stacey.
Stacey Simms 5:31
I know that you have a little bit that you want to talk about with Gvoke. They are a sponsor of my podcast as well. Let's just dive in and talk about that because being prepared is just part of the reality when you live with diabetes, right
Robin Arzon 5:42
100% I mean, in the landscape of things that are uncontrollable of living with diabetes and diabetes management, we have to control what we can control and Gvoke Hypopen is the first auto injector of medicine if we have a severe low blood sugar event, and the looming prospect of that can be scary. And as an ultra marathoner as someone who lives as an athlete lives with movement, you know, and I know your listeners are very, very well versed in the diabetes landscape, and probably can relate to that to a certain extent. I needed to take agency back, which is why I partnered with Gvoke Hypopen because recently, for example, when I ran the New York City Marathon, I had the Gvoke Hypopen in my race kit. Thankfully, I didn't need to use it. But it does give me peace of mind out there on the racecourse, you know, knowing that I have this medicine accessible to me, if I have a severe low,
Stacey Simms 6:31
I'm going to knock wood everywhere I can find some because yeah, I've had to use Gvoke or any kind of emergency glucagon in the 15 years since my son was diagnosed, have you ever had to use anything?
Robin Arzon 6:41
Thankfully, no, thankfully, I have not had to use it. And I'm very grateful for that. And I'm also grateful that I sought out the right care for myself. And I advocated for myself with my doctor. And I recommend folks do the same and of course, do their own, you know, investigation of safety and risks and allergies and all the things associated with with any medical prescription. But we have to advocate for ourselves and figure out what works for our lifestyles.
Stacey Simms 7:04
Alright, so you were diagnosed with type one as an adult, you were already an incredible athlete. And I think I heard you say somewhere that you ran a half marathon a week or two after your diagnosis.
Robin Arzon 7:14
Yes. So I had a half marathon, I think a week later. And then I had a 50 mile ultra marathon few weeks after that. So it was a blurry and really daunting time. And I had to figure out quickly, this new life, this new thing, I believe superheroes are real. And I know that folks living with diabetes, diabetes warriors are superheroes. And in my superhero toolkit, It now includes insulin, it includes glucose taps. It includes the you know, the Gvoke Hypopen and it's I developed a mantra actually, during that time that forward is a pace. There are some days when the next step is the only step that you can focus on and that's okay. But I figured it out because it was meaningful to me the first question I asked, when my endocrinologist said, you're going to be living with insulin, your pancreas doesn't produce enough or any, I thought, Oh, okay. And I said out loud, how am I going to cross the ultra marathon finish line I have in a few weeks. And we figured it out. And I made mistakes, and I figured it out. And I educated myself. And I want folks to feel that same empowerment of like, gosh, we're gonna figure it out. We're going to be ready. We're going to be warriors, and we're going to continue to be epic.
Stacey Simms 8:24
One of the biggest questions I got when I told my Facebook group for the podcast that we were talking was, again, knowing everybody is different. But you know, just what do you do to avoid lows? Because exercise? I mean, let's face it, some people with diabetes do not exercise because they are afraid of low blood sugar. How did you get past that? How do you avoid crazy highs, crazy lows, when
Robin Arzon 8:44
you're exercising, it is a lot of trial and error. And just like anything else, it's observing, just like observing how your body reacts to a certain food, you have to observe how your body reacts to a certain type of movement. For example, lifting weights, for me might make my blood sugar go up. Whereas of course, cardiovascular or aerobic things like the bike with running will make it go down. So I really encourage folks to get curious, start small, right? Well, you don't have to go out and run an ultra marathon. But maybe you know, you start with the 10 minute walk around the block and see what happens. And then you bring you know the glucose tabs or the apple juice with you, I always have some type of rescue carbs, right. And this is really where the Gvoke Hypopen can come in as well. Because you know, you've got that in a severe and you know, in the situation where we're really putting ourselves in a low blood sugar, severe low blood sugar circumstance, we have medicine that is on the spot that is going to react on the spot that gives me a lot of peace of mind. So it's that two pronged approach of daily diabetes management. And then you know, having this in a circumstance where things get a little bit more severe, or a lot more severe.
Stacey Simms 9:48
Yeah, we have quite a few people who said I take her class I see her all the time. Have you ever had a low blood sugar during instruction like when you're doing a class?
Robin Arzon 9:57
Thankfully, yes, I've gone low but It's all been manageable, drink some juice, keep it moving. I've never had to stop a workout, thank goodness. And that's literally 1000s of hours of practice of knowing my body and knowing the exact timing of like, okay, I'm going to drink a quarter of my smoothie. Eight minutes before this class, I really have had to treat myself kind of like an experiment, like, get curious and just see and trust that even on the days that aren't my best, I'm trying my best and my best is good enough. That is also encouraging. So So I encourage folks to give themselves that same grace, but also that same dose of bravery. You mentioned that there are folks of your listeners who are so scared that they're not moving, but they're not working out. And that really saddens me, because they're limiting their own potential. And why you're letting diabetes when when you do that.
Stacey Simms 10:46
I don't know if you're familiar with Don Muchow, who ran or walked from Disney Land to Disney World that she I did I
Robin Arzon 10:53
read about this. He was told
Stacey Simms 10:55
when he was diagnosed a long time ago, right. I think it was the late 70s. He was told do not exercise because it was too dangerous. That was a real thing that people were told not all that long ago. And he had to wake up one day and say no, no, you know, so I give you so I mean, sounds silly to say, but I give you so much credit for getting your diagnosis and saying no, no, I'm, I'm getting right back into it. And I've had the privilege of talking to a lot of people in the public eye like yourself who have treated lows while they're on camera. musicians who sneak a sip of orange juice or racecar drivers to kind of have it in their car. Can I ask you do you keep something sneaky? Is your water bottle is the other two maybe that people should look for?
Robin Arzon 11:32
One is water and one is juice. I always have some form of juice on me onset always, always, always. And yeah, no shame in that. If I need it. Take a sip, keep it and keep it moving. Thankfully, you know,
Stacey Simms 11:44
yeah, I think it's lovely to find out those little things because it makes our kids and a lot of adults feel better to know they're not alone. I mean, that's half of this. Did you find a community when you were diagnosed with type one because it can be very isolating?
Robin Arzon 11:57
You know, I was, as I mentioned, I was running ultra marathons at the time and there is an amazing ultra marathoner, Steven Anglin, very accomplished he does hundreds and hundreds of miles at a time really epic guy. He was the first person I went to outside of my medical team. And I was like, What the heck, what do I do and you know, he kind of talked me down. And you know, I hope to be able to pay that forward, especially as being part of this be ready campaign, I want to be a visible example of the fact that we can continue moving, we can continue being heroic in big and small ways in our very own lives. Um, you know, as a new mom, I read fairy tales to my baby girl every night and I want to live a fairy tale that is is is even stronger than things that she's going to read in books, and then pass the baton to hertz to one day live just as gravely, but it does require us to be prepared. And that is literally why I wanted to partner with the Gvoke Hypopen team. Because the reality is, the more prepared we are, the more peace of mind we're going to have. You can't control everything. And with any prescription medication, you have to speak to your medical provider to make sure that this is the appropriate avenue for you. But it does provide me peace of mind in the event that a severe blood sugar is looming.
Stacey Simms 13:05
You're coming to 8 years with type one, have you experienced burnout at all yet? You know, it's I think,
Robin Arzon 13:12
yes, I mean, there are certainly days where just like really more of this tightrope walk. So it's definitely exhausting. And we make to think like a pancreas requires a lot of mental energy. But I'll tell you something, I've discovered more than burnout, that every single day we have the choice to turn why me and to try me. And the self pity is poison. I think that self pity is poisonous and much more harmful than burnout. For me, I choose to constantly flip the script, constantly turn pain into power, I have no other way. And it's both being someone that lives with type diabetes, and also being an athlete, and also being a mom, and also being an executive and also being an author and also being an entrepreneur. And it's like, let's go.
Stacey Simms 13:56
I know we're gonna run a time. Two more questions, if I could, you mentioned your daughter things beep with diabetes. How was she doing with that? I mean, she's so tiny. But does she know what?
Robin Arzon 14:05
Oh, my goodness, you know, I mean, we're just learning and she's very curious about the gadgets and the beach and the stuff and I will explain to her, you know, in age appropriate ways of like, this is mommy's medicine, and this is what Bobby needs to do. And now I explained to her what a pancreas is, and you know, things that I definitely didn't learn at her age. But you know, I want her to know, I want her to be informed too. And I want her in order for her to be proud of me. She needs to be informed as to what I go through. And I want her to see me dealing with challenges and rising above it. The Diabetes community is incredibly supportive, and whether you know, the Gvoke Hypopen can be used for folks, age 2 and up. So that's a wide swath of our community and Gvoke.com is a great place for more information. That's where the total story is, including any side effects information and safety language.
Stacey Simms 14:51
And then the last question is just what are you looking forward to in 2022? You've already accomplished so much you listed all those things that keep you so busy.
Robin Arzon 14:58
I'm very excited. about the launch of my children's book, it's my first children's book strong mama. It is a love letter to my baby girl. And it really puts the focus on a caregivers self care. So let's remember that we have to prioritize our self care. It's not selfish, whether your parents or not take the time for yourself. Because yes, that burnout is real. And we have to go inward sometimes in order to give
Stacey Simms 15:21
outwardly but like hope when it comes out, you'll come back on and share.
Robin Arzon 15:24
Oh, that would be great. That would be great. Nice. Nice to see you today, Stacy.
Stacey Simms 15:28
Oh, my gosh, thank you so much, Robin, I appreciate your time. Have a great one.
You're listening to Diabetes Connections with Stacey Simms.
More information about Robin a full transcript and the links to Gvoke and to the video are all at the homepage at diabetes connections.com. I am going to follow up with her hopefully, she'll come back on in a couple of weeks to talk about her children's book and answer more of your questions.
I mentioned at the beginning of the show that Benny asked me to try something new. So let me just set kind of set the table about what's been going on here, especially if you're new to the show. So Benny was diagnosed in 2006. Right before he turned two, he is 17. Now, and so he's had diabetes for really just over 15 years. For the last two years, I've really tried to slide into doing less and less and less to the point where in October of 2020, I turned off all of my Dexcom alarms except for urgent, low. And after a big trip he took the summer he went to Israel for a month with a non diabetes camp after he did well with that. I said to him, Well, what do I do now? Right? What do you want from me? How can I help you? Am I here just for customer service? Right? When you want me you contact me, not the other way around? And he said that that's what he really wanted to do. Have I been 100% successful at that, of course not doing nag him here and there to bolus or if I see something wonky? Of course, is he doing? Well? Yeah, he's doing really well, except I'll be honest with you. He's not as diligent. He's not as on top of it. And he wouldn't mind me saying this, as he was when I was diligent and on top of you know, and as you're listening, if you're laughing, if you're an adult with type one, or if you're a parent of an older child, or young adult with type one, you have gone through this, I've gotten a lot of reassurances from my friends, the diabetes community that as long as he's not doing anything dangerous, and he certainly is far from that he's doing great that the way I would do it is not gonna happen anymore. It's up to him now, which is really, really, really hard.
So here's what the challenge came in. About a month ago, I pointed out to him that, you know, he was missing some boluses. And he wasn't paying attention to things as well, you know, we had like a, it was a moment where I said, can I talk to you about this? And he agreed, and we had a really good conversation like we do every once in a while. And he said, You know what, Mom, I'd like you to try to remember every time you eat to do something, and I said, Yeah, but after 15 years, like how can you not know how can you not do this? Right? I mean, every parent has said that or thought that right? So he said to me, okay, every time you eat anything, I want you to text me. I said, Sure. No problem. I always have my phone with me. That's gonna be easy. And you know, he rolled his eyes. And he said, we'll say,
so the first day, I text him every time I eat three meals, you know, a billion snacks, whatever I'm eating, I text him every time. The next day. I text him. I'm not even really thinking. I text him at dinner. He was at work. He texts back “Is this the first time you've eaten today?” with assorted emojis. And I went, Oh, my God. I did not text him for breakfast. I did not text him for lunch. I hadn't even thought about it. I completely forgot about our bet. And I said, Okay, not fair. That was just day two. It wasn't that I forgot to quote bolus while I was eating. I just forgot that we had agreed to do that.
He said, Okay, I'll give you another couple of days. Well, the next day, I remembered breakfast, I forgot lunch. So he wanted me to keep it up for two weeks, which was our original agreement, I felt that he had proved his point after a day and a half, really. But I kept it going. And I did better. But I really failed at it.
Was that a lesson with universal implications? Probably not. I bet you'd be a lot better at it than I was. I don't know why I couldn't remember. I don't know what I was thinking. But between the two of us, it was a fantastic lesson. And it was such a great way for me to see how even after all this time, you know how difficult this is how tough it is to be perfect. And you know, as you listen, maybe your lesson is, well, that means that you need to set more reminders. And be on him more. I mean, everybody, I guess would take this a different way. The lesson to me was: have a little bit more empathy, and have a lot more respect for the way he is doing it. Well, I mean, we're not talking about a kid who's ignoring his diabetes, and you don't like I don't talk about numbers, but we're talking about an A1C that's, you know, maybe a couple of tenths, maybe a half a point higher than it was last time. And we're already seeing numbers that I never thought we'd see when he was in the teenage years. If you'd asked me, you know, years ago, thank you control IQ. Thank you for a kid who is responsible.
So that's a long way of telling this story that I really got a lot out of so as you listen, if you're a parent, talk to your kid, maybe this is something you can do if you're an adult nodding your head saying yes, Stacy, we could have told you that's what would happen. You know, thank you for your patience. But I got a year and a half before Benny goes off to college. That's it. He is beginning his second semester of junior year. And I think most of these lessons, frankly, are for me. So boy, I hope I'm learning.
All right, we do you have a newscast this week, that is Wednesday, live at 430, on Facebook, and YouTube, and then live on Instagram at 4:45 different times, until these services decide to play nicely together. And I can do them all at once. But right now, Instagram will not let you that's why there are different times for that, but we turn it into an audio podcast that you can listen to on Fridays. And then going forward, we're back to our regular schedule with the long format interview shows every Tuesday.
I am hoping that we're gonna have a lot of technology to talk about this year. We do have some great episodes coming up with the folks at Tandem. We've got an update from Dexcom, as well as some interviews with newly approved products and products overseas that are going to be submitted for approval in the US this year. So a lot to work on a lot to come. I'm really excited about 2022 Not just for the show, but for what I really hope the community starts seeing when this logjam of COVID approvals or COVID, delays at the FDA starts loosening up and walking through so fingers crossed for that.
Thank you as always to my editor John Bukenas at audio editing solutions. Thanks so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days until then be kind to yourself.
Benny 21:29
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
We're taking a quick look back at 2021 and a longer look ahead to 2022 and beyond. Stacey is joined by DiabetesMine Managing Editor Mike Hoskins for a fun talk about technology, trends and even few rumors in the diabetes community.
As always, please remember this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. We’d also add that Mike and Stacey are well-educated about what they're talking here but this isn’t inside information. Don’t set your investments or decide what products to buy from this episode.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode Transcription Coming Soon!
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast..
XX
In the News is brought to you by The World’s Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com.
XX
New Congressional report from Democrats on the House Committee on Oversight & Reform keeping the focus on insulin pricing. It says Medicare could have saved more than $16.7 billion on insulin if it were allowed to negotiate like other health programs. This final report is the culmination of an almost 3-year investigation. Documents from Eli Lilly, Novo Nordisk, and Sanofi indicate these firms "raised their prices in lockstep in order to maintain 'pricing parity'. One particularly damning quote – a Novo Nordisk pricing analyst remarked, '[M]aybe Sanofi will wait until tomorrow morning to announce their price increase...that's all I want for Christmas',"
https://www.medscape.com/viewarticle/964799
XX
Surprising move in Europe – they’ve pulled the SGLT-2 inhibitor Forxiga from the market for people with type 1. AstraZeneca said the decision isn’t about safety but didn’t explain further. There are already concerns about an increased risk of DKA from SGLT-2 inhibitors in people with type 1.. that’s why they aren’t approved in the US.. but many advocates say the benefits outweigh the risks. The UK Chief Executive of JDRF, said it is "appalling" that the drug has been withdrawn, as quote "many people with type 1 are finding it an effective and useful tool to help manage their glucose levels."
https://www.medscape.com/viewarticle/964844
XX
The FDA issues a warning to Medtronic over it’s diabetes headquarters. This is related to a July inspection that led to recalls of the MiniMed™ 600 series pump, and a remote controller device for MiniMed™ 508 and Paradigm™ pumps. Medtronic says they are implementing a range of corrective actions and process improvements related to the observations, and will continue reviewing these actions with the FDA.
https://www.kpvi.com/news/national_news/medtronic-diabetes-receives-fda-warning-letter/article_bf45a3c3-1759-5fff-b234-6a71cd874a98.html
XX
Here’s a new one. Israeli scientists have discovered that the human fetus makes insulin in its intestines before birth and say this means that adults may have a “backup” system that could be reactivated to treat diabetes. This is peer-reviewed research published in the journal Nature Medicine. These scientists say there’s a lot here they don’t understand and practical applications are a long way off but.. the hope is that some kind of medication could one day reactivate these cells in adults.
https://www.timesofisrael.com/israeli-scientists-say-humans-may-have-backup-insulin-system-diabetics-could-use/
XX
Good news Sugarmate fans! Late last week the app makers announced it would once again connect with Dexcom for US customers. They issued an apology and thanked users for their patience. Still working on re-connecting for those outside the US. This is all about changes to the Dexcom API, the way apps talk to each other.
https://help.sugarmate.io/en/articles/5790778-reconnecting-your-dexcom-data-source?fbclid=IwAR3FC616f4mGt4yAGUcEvLDaTVpDhC7aqQIxQPN7lk5ZBNJVxASIDzK57k8
XX
Dexcom expands it’s physical presence, opening a second large facility in Arizona. Big celebration this week with a ribbon cutting ceremony at the 500-thousand square foot facility and a job fair. In looking into this story, I found that earlier this year the other Dexcom center was used as an indoor drive-thru Covid vaccination site.. a partnership between Dexcom, the Arizona Health Department and Walgreens.
https://www.bizjournals.com/phoenix/news/2021/12/14/diabetes-device-maker-opens-another-mesa-facility.html
XX
Time Magazine’s Heroes of the Year are the scientists behind the COVID vaccines. While there are of course many people at work here, they highlighted four – including Dr. Drew Weissman who has lived with type 1 for more than 50 years. He and partners began working on mRNA science for vaccines in 1997, publishing a landmark paper in 2005. There’s a lot more to this story of course.. DiabetesMine ran a photo of Weissman almost a year ago, getting the vaccine and you can see his insulin pump on his belt.
https://time.com/heroes-of-the-year-2021-vaccine-scientists/?utm_source=twitter&utm_medium=social&utm_campaign=person-of-the-year&utm_term=_&linkId=144413683
XX
Miss America memorabilia moves to the Smithsonian, including items from Nicole Johnson, the first Miss America with type 1 diabetes. Johnson posted about this on social media saying she was donating her insulin pump, swimsuit and letters from children with diabetes that she received during her reign in 1999. The exhibit will mark 100 years of the competition. Other items include a hearing-aid-compatible microphone used by Heather Whitestone, the first deaf Miss America of 1995 and the first swimsuit worn in the pageant.
https://www.smithsonianmag.com/smithsonian-institution/miss-america-contest-is-forever-shaped-by-its-swimsuit-competition-180979125/?fbclid=IwAR0YAQt1Lo1X5hB1yce2Ixftk5Y3I6_ncLLCbNBy9H-nKttLtBaYgSXx_Is
XX
New York Times article today about model Lila Moss wearing her omnipod during a fashion show a few months ago. They included a few other runway models with type 1 and got some quotes from JDRF.. nothing too new here but worth mentioning. One tidbit.. it’s not uncommon, these models say, for pumps and CGMs to be airbrushed out if the client or they wish it to be – they’re keeping their tech on for the shoots.
https://www.nytimes.com/2021/12/15/style/lila-moss-hack-diabetes-runway.html
XX
Before I let you go, a reminder that the podcast this week is my favorite things! I had a great time with this episode.. it’s short and fun I think – and I talk about accessories, storage, toys and more. Listen wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.
Next week our predictions episode – DiabetesMine Managing Editor Mike Hoskins joins me as we talk about tech in the new year.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
This week… something completely different! It’s an episode all about my favorite things. With apologies to Oprah, this isn’t about the holidays – it’s a little late for that! And while some of this might make good gifts, this more of a season-less list. Just good stuff I like.
Couple of rules I set for myself: Nothing that needs a prescription. Nothing that I’m getting paid for. No one on this list will even know they've been mentioned until the episode goes live!
Hope you enjoy! -Stacey
Here are the links to everything I mention:
Keep it cool:
Sticky stuff/application:
Benadryl spray and Flonase spray
Cases/accessories
T1D3DGear (warning, profanity)
Dia-Be-Tees shirts and stickers
Books:
Just for fun:
Heroic Kid (play d-tech for toys)
Misc.
The Useless Pancreas (marketplace)
Guitar Pick
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode transcription below:
Stacey Simms 0:00
Diabetes Connections is brought to you by... Dario Health – Manage your blood glucose levels. Increase your possibilities.By Gvoke HypoPen, the first pre-mixed autoinjector 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, something completely different. It's an episode all about my favorite things. With apologies to Oprah, this isn't about the holidays, it's a little late for that. And you know, some of this might make good gifts. This is more of just something I've been thinking about doing for a long time. So I would consider this a bit of a seasonless list, just good stuff that I like. And unfortunately, unlike Oprah, I haven't hidden everything I'm talking about here under your seat as a gift. So I can't do that.
But I did set a couple of rules for myself, you're not going to hear me talk about anything today for which you need a prescription. Right, I'm not gonna talk about medical stuff, and nothing that I'm getting paid for. I will put the links for all this stuff in the show notes, but they're not affiliate links. So that means they go right to the product where I think it's most easily available. They don't go to a special link, you know, which tallies you up and then pays me. I mean, there's nothing wrong with that as long as everybody knows what's going on. And a couple of these folks may sound familiar, I've worked with them before, we have had partnerships and sponsorships with the mostly the booked clinic program. But I really just wanted this to be a fun way to share my thoughts. If you have a product that I mentioned. And the link is wrong or doesn't go exactly where you want it, please reach out. I want to make this great for you and easy for my listeners. So drop me a line Stacey at diabetes connections.com. And maybe we'll get a thread going in the Facebook group to find out some of your favorite things. Because you know, Benny is older now and the products that we really needed, you know, like the super cute insulin pump pouches that he used when he was three years old, he does not use anymore. So I don't have recommendations for stuff like that. Maybe we can kind of get a list going and I can do a follow up in a couple of weeks or months for listeners but you really should be in the Facebook group. Anyway, if you're on Facebook, I know not everybody is so if you're there, come on over. Alright, so here are a few of my favorite things
let's talk about keeping insulin at room temperature. A couple of products I really like for that we don't have a ton of issue with this day in and day out. I do live in North Carolina and Benny of course is outside quite a bit in the summer, he does go to summer camp. When we've needed to keep something at room temperature. We use a Frio generally these Frio wallets pretty standard in the diabetes community you probably know about them. What's nice is you can get them at CBS. Now, I think Walgreens carries them used to be online only. They're really easy to use. Please follow the directions. Don't be like me and oversaturate and then you can't get anything in the wallet. You have to just read the directions. You'll figure it out better than we did. But Frio doesn't keep it cold. It just keeps it cool. But we love Frio.
Close to edging it out. And the only reason it doesn't here is because of the price. And because it doesn't yet cover vials. But that's coming is the VIVI Cap. These folks reached out to me middle of last year, probably spring of last year and sent us a sample we decided to try it on Benny's trip to Israel. If you'll recall, my son went to Israel with his non diabetes camp last summer for a month. This included tons and tons of outdoor activity in temperatures that were in excess of 100 degrees. Quite often, he packed two bags, one was like the go bag, three days worth of supplies. And then the other bigger bag that stayed inside or in a refrigerated area, at least the insulin part of it did on the bus or you know, wherever they went, I have my suspicions as to whether it's stayed perfectly refrigerated the whole time, but only a little bit of insulin went into the desert with. But the idea was he would take a pen, we would use the VIVI Cap, and then he would just change the pen out continuing to use the VIVI Cap in his backpack. Whenever he needed more insulin. He had vials he had pens we use both in his pump. And it's always nice to have a pen in case you need to give yourself a shot something like that. So when he came home and this is so typical of my son went through his bag, for he did a great job with diabetes, but there must have been like a communications problem because he never changed out that insulin pen. He never needed to give himself a shot, which is probably why but he just always used the vials that I'd sent him with. I sent him with way too much insulin for a month but you know, you know mom's What am I gonna do? So upshot of this long story is that the one insulin pen that we sent to Israel with stayed in hot temperatures definitely in excess of probably 75 degrees around the clock, and certainly in excess of 100 degrees for several days at a time during the daytime. And what happened to it right it was with the VIVI Cap the whole time so we decided to test it out. You know how he supervised setting right? I wasn't going to let him use this pen and then jaunt off do overnights or whatever he was with us. And look, we would know right away if that insulin was no good. And guess what? It worked perfectly. It was fantastic. He was in range. I mean, he was really we were really watching obviously, right. But he was in range pretty much the whole three days. So it was fantastic. And I was definitely converted to VIVI Cap. That should be their tagline guys call me if you can stand the Israeli desert heat, right, you can certainly hang out a day camp in North Carolina this summer. They often have promo codes, discounts. It's more expensive than the Frio wallet. But it's also really durable and lasts for a whole year. And it has different sizes. So it will fit whatever insulin you're using. My understanding is that they are working on a similar bit of technology for insulin vials, and that would be great.
Let's talk a little bit about getting stuff to stick. I have a whole document about this. If you haven't seen it, it's been a pop up for a couple of months. It's been incredibly popular. So I haven't taken it down yet. But I'm probably going to move it over to the bookstore section. Do you don't have a bookstore section on the website, we're kind of creating a place to put documents a lot of stuff is free. There are PDFs, so we're gonna move that over there. But of course there there's my book to buy and there will be more later this year. But the getting stuff to stick is so personal. I think it's really hard right? Everybody's skin is so different. So here's what we have liked over the years could not keep anything on Benny skin with a Skin Tac that is the brand that we like we get Skin Tac from Amazon. Over the years we've gone from just using the little Skin Tac wipes to using the liquid bottle we used to liquid for many years. I think gosh, Benny was like 13 or 14 and he was like no more. I don't want that it's not portable enough. He's never home. So he uses the wipes. Now. He uses nothing to dissolve it. So I have no favorite product for that. He literally just rips things off his skin. I cringe every time but hey, it's not my body.
We like Stay Put Medical patches. That's the brand, Stay Put Medical just foyer for years and years. We had trouble in the water. I tried vet wrap I tried all the stuff that all the moms tell you to try. The Dexcom overlays that come free from the company are great, but it didn't work as well in the ocean, or with sweat, that kind of thing. So Stay Put patches really were fantastic for us. The story I always tell is Benny with a diabetes camp for a full week, right Saturday to Saturday. And then we went to the beach and we restarted the ducks calm. This was a couple of years ago. And it survived to Stay Put and the Dexcom survived a week of diabetes camp where they swim and sweat and you know, they're pretty gross for a whole week. It's hot. Again, as I said we live in North Carolina, and then three days at the ocean, sand and ocean. All that stuff that you get and it really did stay put. So I really love that they're big. He got an incredible tan line. That's one of the only downsides of it.
We used Benadryl spray, Benny had a brief time of having a mild allergic reaction. I think this was to the Dexcom G5 years ago and my husband came back from the store with over the counter Benadryl spray not Flonase requested, and it worked fine. So it's kind of a weird, favorite thing, but I haven't heard a lot about Benadryl spray, but I'll mention it here.
I also really really like next care waterproof Band-Aids, the brand doesn't really matter. I mean, it's just a Tegaderm bandage, but I'd like to mention it because you can get it at the drugstore or the grocery store. It's over the counter. Unlike a lot of the stuff that has to be ordered from your medical company or from Amazon, you can take a waterproof bandage and in a pinch, slap it over your Dexcom or slap it over an infusion set. I mean, you have to cut a hole into for the infusion set. But sometimes you can just slap it on top. We've done that and then gently pulled it off later to reconnect to the tube to pump. And it works great. I've heard a lot of people say they're afraid of doing that because they don't want to block the signal from the Dexcom people. We have done this many, many, many times I can show you photos. When we went to the Dead Sea in Israel, I did not want to take a chance of the salt. Right. It's so salty, corroding the transmitter. So we put a waterproof bandage over the Dexcom. And he left it on for a couple of days. I don't know the probably wasn't very comfortable, but he didn't seem to care. And it worked fine. So that's my in a pinch favorite thing at the beach
let's talk about cases and organization something that my son doesn't care about at all. And if I if this were me, I'm the kind of person that I love pouches and organization and cool stuff like that and he really doesn't care. But I will go through and tell you what I like. I am a huge fan of T1D3DGear. This is just a fantastic family in the diabetes community to begin with, and their stuff is awesome. So as you can imagine T1D3DGear, they're making stuff right they're printing it out on their 3d printer and it's everything from trays, which we do use, I love those makes your supplies really easy to find. And they've got different sizes for different brands to insulin protection vials, which I like a lot, and they will do custom colors as well, we've been so lucky, where's the wood that I can knock that we've never actually like dropped a vial, but I always put the vial we're using in the case. And that makes me feel so much better. It's just a really easy, it kind of looks like R2D2 in a way. I don't think that's by design, but it's really helpful and really handy and they're making super useful products. They also make the cutest ones like if your kid wants a unicorn or different options. I'll link up their website, as I mentioned,
Benny doesn't really like pouches, but I make him use them anyway because otherwise his diabetes bag is just a complete mess. So we like the ones from casualty girl, some of these have a bit of profanity, you know, all my diabetes stuff. You can fill in the blank there, but they have a bunch of really clean ones, obviously, you know, for younger children, even for my kid I don't like him carrying stuff in public that that has profanity on it, but they have some really cute stuff specific to diabetes, also personalized. They put names on it, and they were so nice. A couple of years ago we gave away a bunch of their stuff at friends for life, so I always like to recommend them. I also will recommend and link up Disney themed pouches that don't look super Disney. I know a lot of you especially friends for life people you're big Disney fans. I am too but I don't like to have like Mickey Mouse on my purse. I like it to be a little bit more subtle. And at red bubble. There's a bunch of people who will put together pouches you can see the samples. They just kind of hint at Disney so I have the small world pouch but it's just like a pattern that is featured in small world. It's not actually it doesn't say small world. I got Lea my daughter for Hanukkah. This year. I got her one that has the Haunted Mansion wallpaper on it. You'd never know unless you knew. So very cool stuff. It doesn't have anything to do with diabetes. But I love red bubble. They also have a fun bunch of diabetes stickers there. Oh, speaking of stickers. The best is Dia-Be-Tees This is my friend Rachel. And she has amazing T shirts. She is so creative. She's got great stickers, she made an ugly Hanukkah sweater for diabetes, because a couple of years ago, she makes these great, ugly Christmas sweaters for their diabetes steam. They say funny stuff on them. But I pointed out to her like, hey, everybody celebrates Christmas and she was immediately on it. My favorite stickers are the Tyrannosaurus Dex, get it and the Banting fan club that she made this year for Dr. Banting. Very, very cool stuff. And I'll link up to her Etsy shop.
Let's talk about books. I promise I won't talk about my book here. I talk about it enough. But I really would like to recommend some books that have helped us a lot over the years. My favorite, the one that I always recommend is Think like a pancreas A Practical Guide to managing diabetes with insulin. And that is by the amazing diabetes educator Gary Scheiner. He is out with an updated edition. So he did this book, it's got to be I don't know, Gary, I'm guessing 10 years old, but he does update it frequently. I think it's the third edition now. It's really a great source and resource to understand your diabetes and your child's diabetes better and more thoroughly, let's say then perhaps you might get these quick endocrinology visits, definitely better than the information you're getting on Facebook.
I of course love raising teens with diabetes, a survival guide for parents by Moira McCarthy that has not been updated for the technology that has come out since its publication. However, I don't think that matters. I think that there are so many wonderful ideas, thoughts and ways to recognize how tough a time it is for teenagers and come through that time with your relationship with your child intact. So I really recommend that I know Maura is working on updating it. But even still, it's so good because I think so many people with teenagers, even as we say all the time Oh, it's such a tough time. It's they feel so alone. I still I mean gosh, you guys I always wonder and I call Moira. She would vouch for me. And I'm like I'm not doing this right. It's hard. It's really hard.
I also love Sugar Surfing how to manage type 1 diabetes in a modern world by the amazing Dr. Steven ponder, I would be lying if I said we are perfect sugar surfers. But we have used a lot of the principles that are in this book. And it does help you understand so much about how everything works and the dynamic way of managing. You know before CGM. It's incredible to think how much Dr. Ponder was able to do. And now with the monitoring, it's really, really helpful. But I will say you can get this for free. If you're newly diagnosed, I believe it's the first three months it might be six months, I will link it up. But I'm telling you right now, if you get this for free when you're newly diagnosed, put it away for a couple of weeks at least maybe put it away for six months, because it's it's pretty advanced in my opinion, and you got to learn diabetes, you got to learn a little bit more about it before you start worrying about the Delta and other stuff that's in here. But I love Dr. Ponder and highly recommend that one.
I get asked a lot about children's books. And you know Benny and I read so many diabetes children's books, so many I mean how many are there in the market but we read them so often when he was little And my favorites probably aren't even available anymore. You know, Jackie's got game was about this kid who was trying it for the basketball team. And then he goes low. We loved Rufus comes home, which is about the JDRF. Bear, there were a couple of that diabetes kind of popped up into lots of picture books that we read if the person in them didn't have diabetes, or the animals in them. But I gotta be honest with you, I struggle to recommend children's books, because I'm not reading them with little kids anymore. And I think they're a really good judge, right? I do. Like when I go low, a diabetes picture Guide, which is a terrific book by ginger Viera. And Mike Lawson. And this is a terrific book, because both of those people live with type one, we had them on the show, you know, I've known them for years I full disclosure, but I think it's so valuable because as a parent of a child with diabetes, who doesn't live with diabetes herself, I don't have that kind of insight. And I really trust those authors to share that information and help a child kind of give voice to how they're feeling when they go low, that sort of thing. It's a fun, cute book, it's, you know, it's not serious. It's not scary. It's really great.
And I'm just gonna say, and don't be mad parents, if you're thinking of writing a children's book, just carefully consider it. Look at what was already out on the market. I talked to a lot of people who spent a lot of money to put these books out, you know, most of them are not published by a traditional publishing house. Some are but most are self-published. And that's great. But you know, gosh, there are so many out there right now that are very similar. So you know, we don't need a general explainer, please think about what the need in the community is, what's the unique need, you can fill? And I would say, you know, that's why I like when I go low, because it's written by people with type one, we do need them. I mean, the children's books are great. And there's some wonderful ones out there, but I'll tell you, what I'd like to see is some elementary school and tween level books. That's what we really need around here. We don't need another picture book, we need something that an 11 year old or an eight year old could read and see themselves in, you know, baby sitters club is the only thing I can think of where diabetes is there, but it isn't always the focus, it would be really nice to have something else like that. Frankly, I'd like to see that adult level book as well. There's a couple of authors that have written books were diabetes featured but isn't like the main point. But boy, it would be really fun to see that in like a blockbuster bestseller kind of book if they got it right of course.
Alright, let's talk about some just for fun stuff. years ago, Benny got his years ago on his 10 year diaversary. So five years ago, we gave Benny the I heart guts, stuffed pancreas. I heart guts is a company that makes they're so funny. They make stuffed animal type body parts, I'm sorry, they call them plush organs. And since we purchased a few years ago, they have a few more options on their website. They have socks, they have pouches, I was talking about pouches earlier, there's one that says party in my pancreas. But what I really like about this is you can get something for your kiddo with type one. But you can also find something for a sibling who doesn't have diabetes, right? If you're if you're just looking for something silly, I gave my daughter the heart, right? I mean, knock on wood, thank God, there's nothing wrong with her heart. But it was a symbol of my love for her. And while she thought it was kind of silly, you know, it's a way to include her. So diabetes isn't always you know, the middle of everything. And they I mean, this place absolutely cracks me up. There is so much here. They've got puns as far as the eye can see. So if your kid needs their tonsils out, if your wife is having a knee replacement, these are just really fun. And I may have to go and order a huge amount of the stickers.
One of the things I absolutely love is that a lot of businesses have popped up to make toy accessories for kids with diabetes. So you know, you've probably heard like Build A Bear has a diabetes kit, you can get that online. years ago, the American Girl doll kit kind of kicked this off. But there's a bunch of people in the community making this stuff. So I recommend heroic kid, and they make tiny little CGMs for your Elf on the Shelf. If you're into that, or you can put it on an American Girl doll. You can have a libre, they now make a bunch of insulin pumps. It's awesome. I love this stuff. I mean, I can't even imagine if we'd had a real real looking insulin pump for Benny when he was two years old that he could have stuck on his Elmo. Holy cow. So heroic kid is fantastic.
And the other thing for kids I wanted to share. And I I tell if you saw my newscast last week, we talked about this I broke this story in 2019. Jerry the bear, and Rufus the bear are now one, there can only be one, there was only one bear. And we talked about this when beyond type one and JDRF announced their alliance in 2019. I kind of jokingly asked like what happens to the bears? And they answered it with a straight face and said only one. We're gonna figure this out because it doesn't make any sense to have to, you know, we don't want to be spending money on this kind of stuff. So what happened is Rufus is now $22 which is a lot less than the starting price of Jerry. And if you're not familiar, I probably should explain. So Jerry, the bear is an interactive toy made by the folks at Sproutel, they have gone on to make things like my special AFLAC duck. They have, I think it's called a purrburl. It's like a little stuffed animal that kind of helps kids kind of calm themselves. It's interactive that way. And but they started with Jerry, the bear was their first product developed when these guys were in college. It's a really smart team. But Jerry is a teaching toy. And there's an app on he's evolved over the years and really looks great. And of course, now he looks like Rufus. So this is Rufus on the outside Jerry on the inside, and it's available for $22.
I'm gonna call this next category, miscellaneous, because these were just a couple of things that I wanted to make sure to tell you about. But they don't fit into many of these categories. And the first one popped up into my Facebook feed. But it looks beautiful. It's a ring. It's kinda like a zigzaggy ring. But it's called to my daughter highs and lows ring, it is only $36. It is cubic zirconia. It is sterling silver plated with 18 karat gold. So this is not a you know, super expensive super valuable ring. And that's fine. I think it's great for what it is, makes it a terrific little gift. And it comes with a card that says the ring stands for the highs and lows in life, wear it as a reminder that I will be there for you through all of them. That's pretty cool. And hey, moms, I mean, you can buy it for yourself. Even though we go through some highs and lows, they don't all have to be diabetes related.
I want to mention, this is very silly. But this is our miscellaneous category. And these are my favorite things. I think everybody who uses a Dexcom should have a guitar pick lying around. Because you've probably seen the trick to use a test strip to to pry the Dexcom transmitter out of the sensor for a couple of reasons doesn't work for us. I don't know if our test strips are weak or our transmitters are strong. But we have found that a guitar pick does the trick very easily. And I'll tell you the number one reason why we have to remove Dexcom transmitters, it's because then he will start a dead transmitter, or I'll start a dying transmitter. And he'll ignore all the notifications, we'll put the sensor on and clip the transmitter and then the transmitter is dead. So yeah, the guitar pick comes in handy to pry that out and then put the new transmitter in.
I also want to recommend a website not a product here but Useless Pancreas.com is a clearinghouse for so many products. They've done an amazing job. We had them on the podcast earlier this year. But since I talked to them, they've added so much. So if you're tooling around and you're not sure even what you're looking for, like I need to get something that'll make stuff stick or I need something that'll they have these two categories, like what will make my kid happy. It's just a neat place to go and find a diabetes marketplace. So I'd like to recommend that because, you know, you go on Amazon, there's so many choices. But they've done a nice job of really trying to narrow it down and give us one place to go.
Alright, before I wrap it up here, I did ask Benny if he had any favorite diabetes, things to recommend. And he looked at me like I hit three heads. After thinking about it for a minute or two. He said, The silent button on my pump and Dexcom. So I can't say I blame him for that. I am happy that he has the vibrate only we wish every alarm could be silenced. We understand why they cannot be.
So there you have it. That's my very first favorite things episode, I will put a link in the show notes. For every item that I talked about here, I want to make it easy for you to find. Again, if you are haven't mentioned and you have a product and you're not crazy about the link I use, feel free to email me Stacey at diabetes connections.com or ping me on social media and we will figure it out. I want to make sure that people can find your stuff. And if you have your own favorite things that you'd like to list, I think I will put something in the Facebook group and maybe we'll share that in the weeks to come.
Thank you as always to my editor John Buchanan from audio editing solutions. Thank you so much for listening. A couple of weeks left in December, we are going to have these Tuesday episodes, as I mentioned, including kind of a look ahead to next year some predictions possibly. And I'm really hoping to get one more technology update for you in before the end of the year trying to get someone from Tandem to come on and talk about that R&D update that I spoke about in the news episode. Last week. They laid out their five year plan for new products and software. But I will see you back here on Wednesday for in the news or if you listen on podcast. That'll be Friday. All right. I'm Stacey Simms. I'll see you back here soon Until then be kind to yourself.
Benny 24:43
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode transcription below:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast..
XX
In the News is brought to you by The World’s Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com. You can also get a big discount right now at diabetes-connections.com – use promo code celebrate to save $4
XX
Our top story, big news from Tandem as they lay out their product line for the next 5 years. Still waiting for FDA approval for bolus by phone.. once that comes through next up is Mobi, that’s brand name for what we’ve all been calling T-Sport until now. Then there will be an X3 pump, then Mobi goes tubeless, then a true disposable patch pump. They also mentioned some software upgrades. A lot can happen in 5 years but exciting to see it laid out. A lot more to come here, we’re working on having Tandem on the show soon.
https://investor.tandemdiabetes.com/events-and-presentations
XX
Over at Insulet, CEO Shacey Petrovic says they no longer expect FDA approval for Omnipod 5 in 2021. After all, that’s in just a couple of weeks. She spoke at a NASDAQ investor conference and said it’s not any kind of problem, just the COVID backlog at the FDA. Petrovic says she is – quote – “eminently confident in our submission.”
https://www.medtechdive.com/news/insulet-omnipod-5-delay-fda/610981/
XX
More stem cell research news, this time from Viactye. University of British Columbia and Vancouver Coastal Health. showing that a tiny implant infused with stem cells can help the body produce insulin on its own. Fifteen patients living with Type 1 diabetes participated in the study, which included the insertion of a device the size of a quarter in their abdomen. Each device contained millions of lab-grown cells that were “coached” into becoming insulin producing beta cells. Six months later, the cells had started producing tiny bits of insulin. Next year the team plans to do the procedure without immunosuppression drugs. The ultimate goal to have somebody who stops taking insulin and not have to take any anti-rejection drugs. We first talked to Viactye about this in 2016 – I’ll link up that episode.
https://www.ctvnews.ca/health/stem-cell-based-treatment-may-help-type-1-diabetes-patients-produce-insulin-canadian-study-1.5694725
XX
The White House continues it’s push to pass Build Back Better.. focusing a lot this week on the insulin co-pay cap. It’s passed the House and if the Senate approves.. government and private insurers have to cap the cost to the patient at $35 for a 30-day supply of insulin. Nothing in the bill for those without insurance. Btw 20 states and DC have passed similar copay limits. I did see late this afternoon on Twitter a few reps who want to change the language to include the uninsured. We shall see..
XX
The Free Style Libre 2 App is now available for Android. Approved earlier this year, it’s now actually available for download. The Libre 2 version features optional real-time alerts for both low and high glucose levels, without the need to manually scan the sensor to trigger those alarms. You do still need to scan to see the actual number.
https://www.abbott.com/corpnewsroom/diabetes-care/freestyle-libre-2-now-connected-to-your-iphone.html
XX
Dueling lawsuits from Abbot and Dexcom. Abbot filed suit last week – it’s sealed but has to do with a 2014 settlement agreement. That agreement gave the companies cross-licenses to patents related to glucose monitoring. It also included agreements lasting through March 2021 not to sue each other for patent infringement or challenge the patents' validity. We told you back in June of this year that Dexcom filed the first suit, Abbott countered the next day. This seems like an additional legal maneuver in the same case.
https://www.reuters.com/legal/transactional/abbott-sues-dexcom-over-glucose-monitoring-patent-settlement-license-2021-12-02/
XX
Another entry for the non-invasive blood sugar monitor rumor mill.. K-Watch Glucose smartwatch has a disposable part underneath that features something called “micro-points” that will measure blood glucose. The company says, “Although the wearer might feel some slight pressure, there is no breaking of the skin and therefore no pain.” Not sure those two thoughts really go together – enough pressure can be uncomfortable enough.. but we shall see. The coverage here talks about clinical trials and getting this on the market late next year. I went to the actual clinical trial recruitment site – and I’ll link that – it says the trial started in November but it also says it hasn’t started recruiting. I know I’m the dream killer with the non invasive monitoring stuff. I do believe it’ll get here I promise! But I think the coverage of most of these items Is irresponsibly based on rumors.
https://clinicaltrials.gov/ct2/show/NCT05093569
https://www.notebookcheck.net/Painless-continuous-blood-sugar-monitoring-on-the-horizon-for-US-199-thanks-to-the-K-Watch-Glucose-from-PKVitality.582622.0.html
XX
there’s a follow up to a fun story I broke back in 2019 – the merger of Jerry the Bear and Rufus the Bear with Diabetes. Rufus is getting a big it looks like the Rufus outside with the Jerry the Bear educational interactive stuff and the app. The price is 22-dollars! A far cry from the first version of Jerry which we gave away a few years ago and cost hundreds of dollars. This is really great and I would have absolutely bought it for Benny if it was out when he was little. How’d I break the story? I interviewed the heads of JDRF and Beyond Type 1 when they announced their alliance– and I asked what was going to happen to the bears almost as a joke. They said, nope – they told me then.. only one bear would make it.
https://www.prnewswire.com/news-releases/jdrf-announces-the-relaunch-of-rufus-the-bear-with-diabetes-301437309.html
XX
I want to take a moment and remember Thom Scher – the CEO of Beyond Type 1 who died earlier this week. I went back and listened to that interview we did back in 2019 – the one where he and JDRF told us about Jerry and Rufus… and a lot more. It was one of many times we talked on and off the podcast. I didn’t know Thom as well as many others in the diabetes community. We only met in person a few times – first in 2018 at the Diabetes Mine conference and again in 2019 at FFL – where we talked about working together more.. sort of noodling out the possibility of bringing the podcast into the Beyond Type 1 content. Thom was a terrific interview – not afraid to go on the record and very accessible. I remember once I warned him that I had some tough questions from the community about get-insulin dot org because beyond type 1 takes money from the insulin makers. He welcomed it and answered the questions other people would have avoided. I just read that Thom was 33 when he died. So incredibly young. He believed in what he did.. he wanted to make life better for people with diabetes. And the world is little emptier without him today.
XX
Before I let you go, a reminder that the podcast this week is with the executive team at ConvaTec – the people who make infusion sets for tubed pumps, including the new 7-day set for Medtronic. you can listen to wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.
Next week it’s a first for me, I’m going to do a “favorite things” episode.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.
When we heard about a new seven day infusion set approved this past summer, we had a lot of questions! We've been told since the very first day of pumping to only use the inset for 3 days tops and to always rotate the site. How did they get seven days out of one of these without skin irritation and with good absorption? We asked the folks who make the inset to come on the show and explain.
Turns out, ConvaTec Infusion Care makes the insets for Medtronic, Tandem, Ypsomed, Dana RS and Roche pumps. So while I started off talking about the longer-wear version, the conversation you’ll hear includes everything from proper insertion technique, their challenges teaching users best practices, improvements they're making to the cannula and more. In this interview you will hear: John M Lindskog, President & COO, Matthias Heschel, Vice President, Research & Development and Intellectual Property Rights and Dr. Kerem Ozer, Director Infusion Care Clinical Development
Good article about using insets correctly and understanding the different types.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode Transcription Below:
Stacey Simms 0:00
Diabetes Connections is brought to you by Dario Health manage your blood glucose levels, increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
This week, how much have you thought about the way your insulin pump connects to your body? Honestly, it's where a lot can go wrong. The people who make the insets know that they have come a long way. And they're trying to make it better.
Matthias Heschel 0:40
It's what some people call their Achilles heel in the arm therapy were very much aware of it. And our approach simply is instead of doing product design at the drawing board, to the product design in the field, really taking the patient at the core of our design process, really understanding behaviors, understanding what could go wrong, and then design the product accordingly.
Stacey Simms 1:05
That's Dr. Matthias Heschel, head of R&D for ConvaTec infusion care. He, the CEO and the Medical Director sat down with me to talk about longer were tips for users and what's next for this really important part of pumping.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show, you're always so glad to have you here. We aim to educate and inspire about diabetes with a focus on those who use insulin. I am really excited and happy to talk to the guys from ConvaTec. This week, you know, they were frank, they were really up for anything. And I have said for years that insets are the weak link in pumping. And they really opened my eyes to some of the issues and what we can do as users or you know, as parents of users to make things a little bit better. And of course, they're working on improvements as well.
But before we jump in a little bit of housekeeping, I want to talk about the rest of the year schedule for the podcast, I can't believe we're in well into December at this point. Right now the plan is to keep going with these longer format. The interview shows that air on Tuesdays, and we'll have that there shouldn't really be any interruption or any week skipped through the rest of the year and into January. I'll let you know if that changes. But that is the plan right now.
As for the newscast, I will probably not have a newscast on the 22nd of December. Again, I reserve the right to jump in and make a liar out of myself. There is breaking news sometimes late December is when the FDA makes a lot of decisions. So we could have some breaking news. But I would say right now, it looks like at least that one date will not have the live newscast on Wednesday on Facebook, Instagram and YouTube. And so then I will not be turning it into one because that would be a podcast on Christmas Eve and I don't think there's a lot of demand for you to listen on Christmas Eve but you tell me if there is I'm happy to serve and try to put all that together.
Another quick announcement and I'm actually going to talk more about this after the interview is that book number two is in the works. The second World's Worst diabetes mom, I signed on the dotted line to deliver that next year. So we have a timetable. We have a theme. I have lots of stuff. I'll tell you about that again after the interview, but man, I'm really excited about it.
Alright, a little bit more about our guests. ConvaTec infusion care makes insets for both of the tubed pumps available in the US they make for Tandem they make for Medtronic, they don't make Omni pods. They also make insets for Ypsomed and other tubed pumps abroad. But if you use a tubed pump in the US you use their products. In this interview you will hear John Lindskog The President and CEO, Dr. Matthias Heschel, the head of R&D, research and development and Dr. Kerem Ozer, the Medical Director, I worry a bit about three voices. I mean, really, it's for with mine, but we do I think we do make it clear. And there is always a transcript over at diabetes connections.com at the episode homepage, if you find it easier to you know some people follow along, reading as they listen. Some people prefer to read my transcription software. Let me tell you got a workout on this one. It doesn't speak diabetes very well to begin with. And as you can imagine, there was a lot of technical stuff but we did it we got it and it's there for you. But I think that these three were very frank and gave us a lot of information a national here. They have a question for us.
That's coming right up but first Diabetes Connections is brought to you by Dario health. Bottom line you need a plan of action with diabetes. And we've been lucky that Benny's endo has helped us with that and that he understands the plan has to change. As Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. Their published studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one C within three months and a 58% decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your Diabetes management, go to my dario.com forward slash diabetes dash connections for more proven results and for information about the plan.
John, Matthias and Kerem, thank you so much for joining me. We have a lot to talk about. And I feel like I've ever been to the company at my disposal. Thank you so much for taking the time to do this.
John Lindskog 5:20
Thank you, Stacey. This is John and thanks for having this opportunity to talk with you. Maybe just a couple of words of ConvaTec infusion care. I'm the president and CEO of that part of ConvaTec. We are based out of Denmark and out of Mexico, we have one plant making a few sets in Denmark, and we have two plants almost side to side in Mexico, and also is fully dedicated to making few sets for subcutaneous infusion. Today with me, I have the Matthias and I Kerem and if you could just kind of introduce yourself briefly.
Matthias Heschel 5:58
Yeah, this is Matthias. I'm heading research and development at ConvaTec Infusion Care. I’ve been with the company for 10 years. Just happy to be here.
Dr. Kerem Ozer 6:07
Hi, everyone. I'm Kerem Moser and I'm the medical director for ConvaTec infusion care. I'm an endocrinologist by background. I've been with ConvaTec for about four months now. And prior to that I was in practice seeing endocrinology and diabetes patients for about 15 years, and very excited to be here.
Stacey Simms 6:28
Wonderful. Well, thank you all so much for joining me. We have a lot of questions, questions for my listeners questions that I have as a mom of a kid who has used insets since he was two years old. So let me jump in and ask about the newest infusion set as I see it, which is with Medtronic and Matthias. Let me ask you about this if I could. we're hearing really interesting things seven day up to seven day wear, which I believe rolled out in Europe first is now approved in the United States. How I don't want to ask you to give any trade secrets away. But how do you get it to last so long when we've been told for years that two to three days is the maximum for an infusion set?
Matthias Heschel 7:03
Yeah, actually, the answer is very simple. Stacey. Medtronic, they provided quite some details about the year back at the virtual conference. So Medtronic, they added a proprietary connector, which connects the tubing to the pump reservoir. And this connector stabilizes the instrument. On top of the canula, a new tubing, which contains the preservatives, contains the antimicrobial effect of the preservatives. And the last thing is that we added a new adhesive to keep the infusion set on the body for up to seven days. So basically three things. New connector, new tubing, containing preservatives and a new adhesive.
Stacey Simms 7:48
So it was kind of a partnership with Medtronic. It's not all on the inset itself.
Matthias Heschel 7:52
It's a partnership with Medtronic, and they in general, talking about new product development, future products. It's all at system level. So we cannot just develop a new infusion set. We need to take the reservoir into account we need to take algorithms into account so it's it's always a close partnership with pump manufacturers.
Stacey Simms 8:15
how have people received it? Or is it working well, is the adhesive doing okay, on people's skin?
Matthias Heschel 8:20
It seems so we have received some first indication Medtronic percent that results at the diabetes technology meeting here this week, actually. And that has shown that there are lower occurrence of hyperglycemic events. There are fewer occlusions. And I think the average wear time was seven days. So it seems that the patients that have come on to an extended wear infusion set are really happy and the infusion sets perform as designed.
Stacey Simms 8:57
Before I move on from this one more question for you Mateus if I could. I'm curious, are you working with other pump companies on longer where infusion sets? Or is this going to be a Medtronic exclusive for the foreseeable future?
Matthias Heschel 9:10
Well, extending the wear time of infusion sets, that's the unmet need, number one among all patients, so and that's in general interest from all pump manufacturers to have extended wear products in the portfolio. So yes, we're working on the portfolio of infusion sets.
Stacey Simms 9:30
Kerem, let me move over to you if I could for this question. As a parent of a child with type one. We were schooled early on the importance of rotating sites, right? You can't let an infusion set go in the same part of the body over and over again. But most kids and frankly most adults I've talked to who use these products do kind of have a favorite spot. The body. Can you talk a little bit about Yes, I guess there the importance of rotating, but something like a seven day wear or what's coming in the future. Is there a possibility that it could be a little less important? to move that around, or am I dreaming?
Dr. Kerem Ozer 10:02
That's a really good question, Stacey sort of looking forward, just taking a quick step back, just like you said, the importance of sort of proper rotation is something we always talk about in clinic yet in real life, we know that people have their favorite sites. And part of the idea of the rotation, of course, is to reduce scarring and is to reduce lipohypertrophy. I know your listeners will be very familiar with this. But of course, when we say lipohypertrophy, we're talking about sort of the hardening that bumpiness of the layer right under the skin, that subcutaneous area. And when I think about lipohypertrophy, there are several factors that increase that risk, you know, multiple daily injections, pumps, continuous glucose monitors, sometimes the type of insulin being used, and that really changes from person to person reusing pen, needles, all those factors, even higher insulin doses tend to cause more of a higher risk, higher diabetes, duration is a higher risk. Now, when I think about those factors, some of them are you can't change those like diabetes, duration. Some of those factors, you can change by rotating things, when you look at something like extended wear, I think one advantage is you are going to need to change it out less often. So you're technically changing it, you know, less often, it's probably best practice to still change the site and rotate the site. But one thing I think that's going to be even clearer, and I see this all the time, you know, when I talk with my patients, is, I think it's going to be important to realize subtle changes in the characteristics of that site, even before you start feeling hardening of the skin, even before one starts feeling that bumpiness if you notice that a site is starting to not respond as well, you know, you're feeling that you're needing more insulin, you're feeling that the dynamics are changing. That's I think, when it's going to be really key to make that site change.
Stacey Simms 12:21
Interesting. I have kind of said, it's a little bit flippant, but I've said since we started pumping, 14 and a half years ago that gosh, these insets are the weak link in pumping. And what I mean by that is they can fall off easier, they can get occluded, they only last a couple of days. John, maybe let me ask you, can you talk us through a little bit about how you're really trying to make these better? Because I feel like I can have the greatest algorithm in the world on my pump and if the darn thing is flapping on my kids off my kids stomach it's not gonna work
right back to our conversation. Yeah, he does answer that question. But first Diabetes Connections is brought to you by Gvoke Hypopen. You know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you are going to 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: Gvoke HypoPen. It’s the first autoinjector to treat very low blood sugar. Gvoke HypoPen is premixed and ready to go, with no visible needle. Before Gvoke, people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better and I’m grateful we have it on hand! Find out more – go to diabetes dash connections dot com and click on the Gvoke logo. Gvoke shouldn’t be used in patients with pheochromocytoma or insulinoma – visit gvoke glucagon dot com slash risk.
Now back to John Lindskog answering my question about making the insets more foolproof.
John Lindskog 14:00
No, no, no, I totally understand what you're saying I will say and then maybe Matthias can chime in after this that, you know the products like insets, they go through a quite extensive and long development program before they actually come to the market and the products also available on basis on customer feedback. And since this is a medical device, it's very highly regulated in the US through the FDA requirements and Europe through CE and in many, many other countries through local legislation. So the level of rigor and preciseness that you have to do in this work is quite extensive for us to develop a product and mass make it into volumes, which we're talking about millions of units per year does require quite a bit of development work to go there. And there is a little bit of you know there's a lot of factors that play into to the to the development, particularly manufacturing of the infuser set, the quality has, of course, to be the highest possible within the requirements. And there's also, of course, a economical part of it, where you need the competitive cost in order to have these products on the market. So I mean, the process that you see today is actually a combination of all the the user input, and of course, also about, you know, the requirements from regulatory authorities. And, and you know, what can be made in very high scale, we, you know, and strive to improve the products along the way, however, even what may seem as being very small, and my new changes, does actually require a complete change process, which is very well documented, and in that sense, also kind of lengthy process. And I don't know Matthias. If you have any anything to add to that, yeah, quick
Matthias Heschel 15:56
Yeah, but I would like to add is that we have, we have about 1 million pump users worldwide. And as a create variability, it's both the interpatient variability and intra patient variability. So huge differences between patients and also huge differences between the use conditions during a day for the same patient. So what we are going after in our product design is really making as robust designs as as reasonably possible. And best example is, is the newest infusion set on the market, which is the base of the extended wear we talked about earlier, an infusion set we call Mio advance which virtually only has one user step. So you hit the bottom activation button and it produces the soft cannula, retracts the needle and detaches the serter all instantly. I mean, all the steps happening in a fraction of a second. And that means you're basically take the patient out of the equation, the patient cannot do any mistakes during the insertion process. And there we see a huge reduction in in failures on the market. So to your question, Stacey, I mean, we understand that the infusion set is the weakest link, it's what some people call the Achilles heel. In pump therapy, we are very much aware of it. And our approach simply is, instead of doing product design at the drawing board, to the product design, in the field, really taking the patient in the core of our design process, really understanding behaviors, understanding what could go wrong, and then design the product accordingly. And we have seen the first successes and they hope to see further successes.
Stacey Simms 17:40
You know, that's a great point about the very simple insertion of the Medtronic inset. Are there any plans to simplify more brands, because I'm thinking of the one we use for Tandem? And you know, by the time you open it, you peel off the sticky stuff, you, you cock it, you get it ready? You know, sometimes you're already set for error, because if the paper writes up the needle, you know, there's all sorts of different things that can happen if people either press too hard or do it at a weird angle. I know you know this, I don’t have to spell it out for you. But are there plans to simplify other insets in the way that you just described? Since you've seen how successful it is?
Matthias Heschel 18:16
yeah, plans to incremental improvements on existing infusion sets, based on the learnings we have from the field, among others, what we touched upon removing the paper liner from the adhesive, we can certainly redesign this to make it easier for the patient. And that's, that's definitely on our agenda.
Stacey Simms 18:37
I have a bunch of questions that I got from my listeners, they were really interested that we were talking so let me go ahead and grab those. The first one here was really interesting to me. This listener wants to know about the faster acting Fiasp insulin, which seems to have a little bit of difficulty in some pumps, I was wondering if you were looking into that for different faster acting insulins that the manufacturers are coming out with and if you're testing those and working on ways to improve that in the insets
Matthias Heschel 19:06
Yeah, maybe keep a close eye on the market. And every time a new insulin is approved for pumps, therapy, we add this onto our list and do all the necessary trucks stability testing, device stability testing, so you can put this onto our indication for the infusion sets and then it's up to the to the pump manufacturer to also indicate the pump for the new insulin and then the patient can use it. So and that also applies to Fiasp. So we have done all the necessary homework and we know that at least a couple of the pump manufacturers are considering to broaden their pump indication to also include the Fiasp
Dr. Kerem Ozer 19:47
And to that I may also add that we're also going to be looking at Lyumjev ultra rapid lispro insulin from Lilly, which as you know is also approved just recently for pump use. So That will also go through the same processes that Matthias mentioned, whether it's working on biocompatibility, looking at what the system does to the insulin, and its excipients and what the insulin is excipients do to the pump. And so that's in the works as well.
Stacey Simms 20:15
I meant to ask earlier, I had heard about something I don't know if this is the in-house name or something that you're using and research called Lantern technology. Could you explain what that is what you all are working on?
Matthias Heschel 20:27
I was hoping you would ask this question. Lantern is a pretty simple feature tries to mitigate the occlusions we sometimes see for soft cannula infusion sets, when the soft cannula is bent or kinked. And the Lantern features are actually pretty simple. So we provide the soft cannula with additional slits close to the tip of the cannula, and in case the soft cannula experiences any physical impact is spent or even kinked then those slits would open up and would allow to the inset to continue to flow. So it's basically a measure to mitigate the risk that a cannula on the infusion set can get occluded in the cannula.
Stacey Simms 21:15
That sounds really interesting. It sounds like didn't BD medical a few years ago have something that sounded it sounded at least to my ear similar that it had the different slits in the cannula? And it never came out? Is this similar technology.
Matthias Heschel 21:29
It's you could see it as it's different as a similar technology. It's though, quite quite different. I mean, they provided an additional exit hole, just one hole close to the tip of the cannula. And that actually weakened the cannula significantly, and the product was out on the market. They call it a smart flow technology. And the product was marketed by Medtronic as a process that was withdrawn from the market right after. And with our long term technology, putting a number of slits, we have really avoiding this issue that the cannula really occludes. Imagine if you just have one side hole and the cannula kinks or bends, and you would close up this hole. And in our case, having four or six slits, that would be always a couple of slits open and allow the Insulet to flow. So it's a different technology.
Stacey Simms 22:25
Yeah sure. And I don't know how much you can share which brands might get that? In other words, are you working with Medtronic on this? Or you're working with Tandem on this as somebody else? You know, in the should we be watching for this in a more proprietary form? Or will it just going to go in all of your insets?
Matthias Heschel 22:40
Right now we're in the process of implementing technology in our mainstream products, which are the inset two products, which are available to all pump manufacturers, and then we need to see pump manufacturers will pick up on this.
Stacey Simms 22:56
Got it. Kerem, let me ask you if I could, do you have any best practices for your patients when it comes to using the insets and infusion sets? Are there mistakes that are very common that people make, I'd love to kind of hear, you know, what you what you tell your own or in the past what you've told your own patients?
Dr. Kerem Ozer 23:13
Absolutely. The key things, especially if someone is very new to living with diabetes, as you know, there's there's a lot of anxiety there. Everything is new, a lot of new information is coming in, you know, at our clinic, what I always tried to do, what we always tried to do was sort of taking a deep breath, letting people know that there's a lot of resources, there's a lot of support, you know, at the risk of sort of repeating the cliche, it's not a sprint, it's a marathon, and really providing the resources, sort of focusing that more on to the infusion set side, I think one key thing is starting, especially if someone's new to pump therapy, sitting down with them going over the whole process, we had demo kits, sometimes I would demonstrate sets on myself even just to make sure that everyone's feeling comfortable, especially for our younger patients, having the parents there and really taking the time to walk them through the process of what an ideal insertion looks like. And I think doing it in real life really helps in person in real time. As opposed to watching a video which where everything looks so perfect, right? So we definitely emphasize that prioritize that. And then when we start thinking about using the sets, a lot of those things using the alcohol pad and cleaning the area, a lot of things that are repeated, easy to say hard to do every single time. But I think emphasizing the fact that the closer and closer we get to that ideal that the longer we can keep the site's healthy, the longer we can keep the process healthy is important. And as more technology comes in as continuous glucose monitoring gets integrated. As the pumps get smarter, I think there's always the importance of that of that person factor. And making sure that we're really addressing everyone as an individual and sort of seeing where they are and going and holding their hand and walking with them to where they need to be or where they want to be, is key. And then there is as you know, a lot of variation from person to person. And there's a lot of variation from day to day. And being aware of that repeating that message. And sometimes you wake up and you have a perfect day. And sometimes you wake up and there's a lot of obstacles and changes and bringing that message that, yes, diabetes is there. Yes, it brings challenges. But if we see it as part of a larger system, and if we address it as well as we can, as if we can stick with those guidelines, and recommendations. And if we keep open lines of communication between the patient and the family and the clinic, things tend to fall into place. And I'm very proud to say your many, many patients, of course, live decades and decades of healthy lives with diabetes. And I think that the key component there is keeping those lines of communication open and keeping that sort of positive attitude going.
Stacey Simms 26:38
Alright, let's get back to some of the questions that my listeners had. And I thought this was a really interesting one, she asked me when insets are designed is any consideration given to those of us who deal with limited hand strength, or older adults with smaller hands, or even using color tubing to increase the visibility of air bubbles or maybe using color in the cannula. So it'd be easier to see if it was correctly inserted. I've got to believe that you look at this and you do research it but Matthias, can I ask you to just hop in an answer that one?
Matthias Heschel 27:07
Sure. Well, every time when we design a new product, we put a lot of effort into the initial conceptual work. And that means that you propose certain designs, which we then show to the target population. And if the target indication of the product is smaller children or elderly people, those will be included in the assessment of the concept. So we really trying to already in the concept phase to design the product in the way that we can make sure that it can be used by the by the target population. And at the same time, we are compliant with standards. For example, when we have a product that requires activation to push a button, what's the strength of a point of finger for a for a small girl? so we were really trying to incorporate this in our product design.
Stacey Simms 28:05
Another question came in there used to be an infusion set by a different company called an Orbit. I don't recall this, but this sounds great. It rotated so the tubing was less likely to get caught. Any plans to bring that back or something similar.
Matthias Heschel 28:18
Well Orbit is owned by another company Ypsomed in Switzerland, and to our knowledge, the product is still on the market. So we don't have any insights in the in the details. But it's not it's not one of our products.
Stacey Simms 28:35
Got it? It's probably something that's not available in the US yet because we don't have Ypsomed here yet. But it's it's supposed to be coming. Okay, I have a very might be a silly question, but I will ask it anyway, this is a silly question. I get it from listeners all the time. One of the first times I remember getting our box of inserters we had the old one I always describe it looks like a little spaceship. I mean, I know you know exactly what I'm talking about for it was the Animas way back when and now we use Tandem, it came with these little plastic pieces, and no one ever told me what they were for. And as it turns out, then we realize this after my son's inset got filled with sand at the beach, and we could not reconnect. It turns out these little pieces are supposed to go in and protect the site and keep sand out. But I've heard a lot of different versions of what they are really supposed to do and when you are supposed to wear them. So my question is, when you put an inset on the body, it was explained to me like it's almost as though you've got like a vial of insulin with a little rubber on top. You can pierce it, but you can't get into it. In other words, you don't have to cover it every single time you take a shower or go in a pool because nothing is seeping through until you reconnect the needle. Is that the proper use of those inserters
John Lindskog 29:50
Yeah, this is uh, John maybe just a quick comment. So that that is that is true that at the at the time development there were some spare caps. And the idea here was that when you disconnect the tubing from the side, it's true that you know it sealed, the side doesn't seal because there are septums that closes the fluid pathway. However, the idea about providing these small inserts was that you could protect kind of the surface of the septum. With that kind of cover so that you wouldn't have any kind of larger particles being able to, to come in the way like the listener just described getting sand in it. So it was actually, you know, kind of a protection. However, it was not something which was necessary, it was kind of, you know, choice you could make to add that in, though. So that the reason behind that
Stacey Simms 30:48
perfect, there just seems to be a little bit of a misunderstanding in some parts of the community, what people think it keeps bacteria from getting, in other words, if you swim in a lake or something like that, you should pop it in. But it really is just to keep out particles like sand.
John Lindskog 31:01
Yeah, it's only for larger particles. And, you know, the site is perfectly sealed as it is. So it's it's more to kind of say, Okay, I want to make sure that that, you know, I don't have to clean it up afterwards, and so on. So that was the rationale behind that.
Stacey Simms 31:18
I have one or two more questions, kind of to wrap it up. Have I missed anything in particular that you guys wanted to make sure to bring up before I start wrapping up?
John Lindskog 31:26
Actually, there was just one question that I think that at least I had, I would be curious to know about, you know, in each box of the insets, there is an instructions for use, how you deploy, the infusion set. What's out and, you know, that is in some countries made in a number of different languages and so on. And I guess I'm just curious about is that being read all the time, or is that you know, being kept in the place or simply just, you know, put it into the trash can. But what's kind of, because I have a I have an assumption. We have an assumption, what happens to these but but I was just curious to know, if you could share that with us.
Stacey Simms 32:07
I'm so excited that you asked that question, John, I think you know the answer, I can't imagine anyone is really reading the instructions, we all should. In fact, I'm going to take those instructions out and look through them. But it's one of those situations where my book that comes with each box is so thick and intimidating. As I'm telling you this, I'm thinking this is why I don't do it, maybe it's just I'll have to take a look at how long the actual instructions are. Maybe it's in several languages. And that's why it's so thick, but we're so used to and maybe we can blame the iPhone for this. We're so used to opening something up and being able to use it immediately and hoping right that it's very intuitive, that maybe that's why we don't read the instructions. So there's a lot of user error. And frankly, I know there's a lot of user error within sets. I've seen it in my house, I've been the user making the error. So I'll ask my listeners, I mean, I'd be happy to take a quick poll in the Diabetes Connections Facebook group, but I do recall taking a pump class, and we were there for two hours, I came home a couple of days later, I had to change the inset on my two year old I had forgotten everything I had learned. And at the time, this was 2007. I found one video, I mean, think about the days of YouTube back in 2007. And it was in French to show me how to change the inset. But I did that rather than look for the instructions. So John, what a great question. And I will get you more feedback from the community on that.
John Lindskog 33:29
Okay, thanks. Thanks a lot. Thanks. I will say though, that, you know, it is a regulatory requirement that we put those in a box. And we would, you know, like to move it into some kind of, you know, YouTube media or something like that. However, the regulatory requirements are that they should always be there. So we want to see if we can move that in the regulatory requirements. So we can, you know, save some printed matter, and, you know, reduce the waste and make it easier to access.
Stacey Simms 34:02
It's a great point. That is a great point. Before I let you go, here in the United States and I assume in many parts of the world, there's a lot of concerns about supply right now. Any issues, any concerns anything people should be thinking about for the next couple of months?
John Lindskog 34:16
No, I you know, and we have had some issues on supplies in the beginning of the when COVID-19 was at the highest and we have been putting in extra capacity for making progress and investing large sums of money into getting you know, capacity brought up and we should be out of those weeds by the end of this year. And we don't really see any, any issues going forward. But you know, it may take some time to get that all through the supply chain, but I can assure you that we're doing everything which is now a power to always have the capacity to supply the what the demand is.
Stacey Simms 34:57
Let me as we wrap this up, Kerem, let me ask you this. You are new to the company, or you are the newest person here, so the company, what excites you and you know, you've worked with patients for a long time, you've seen how important this part of the device and system is, what excites you about this technology going forward?
Dr. Kerem Ozer 35:15
This is a great question. And this is the reason I'm, I'm here, I'm in the company, I think it really goes back to that point about realizing how important looking at patients insights, their experiences, where they are, what they need, and bring that feedback into the company to help develop new technologies. And I would say, a direct corollary to why I'm so excited about my role here is this is really sort of being a medical person, a physician, and endocrinologist and industry, you really play a bridge role. You're constantly talking with the engineers with the business side, and you're keeping your ear open to your patients, your community and your colleagues. And sort of you're part of that feedback loop, bringing back ideas, presenting your products and saying this will work. This is a great idea, and sort of keeping that momentum going. And I'm very excited about that.
Stacey Simms 36:20
Excellent Matthias you are in r&d, you are the head of r&d, you're in the I wouldn't say the trenches so much. But you're really seeing realistically what's happening on the company every day. Anything you want to add to that. I mean, is there anything that you're really excited about that you'd like to listeners to leave listeners with? Yeah,
Matthias Heschel 36:37
I mean, what, what I always tell the engineers is, you guys, you are directly responsible for how patients or people in the state beat is, how they feel how they are able to manage their daily life. If we do a great job, those people can lean back once in a while and perhaps even forget about the disease, if it will not do a perfect job. They have a terrible day. So that's, that's really what people understand. And that's why at least how I see it. I mean, those people in the medical device industry typically work longer work harder, because they understand they understand the responsibility they have.
Stacey Simms 37:17
Well, thank you so much all of you for spending so much time with me for answering our questions for posing your own questions, which doesn't happen that often. And I'm really glad that you did that. We will get you some answers. Thanks so much, gentlemen.
You're listening to Diabetes Connections with Stacey Simms.
Lots more information at diabetes connections.com at the episode homepage, and I'll link to some of the studies they talked about that longer were the stuff that's in the works. And let me tell you, I went and got the book. I have it right here. Can you hear that? I'm wiggling it, I went and got the book that comes with the insets. And it's right there. Of course, at the top with the little horseshoe thingies that they explained. I hope they cleared up some stuff for you. The book is long, because as I said, it's in many other languages other than English, the directions are maybe two or three pages long. I think it's really just two pages. There's some pictures here. But the English instructions are one to three pages long. And then that's it.
So Benny and I actually sat down and read them. And he does it slightly differently. But what he does works, I mean, we are 15 years into diabetes. So that means we were 14 and a half years into pumping. So he's got it down. But if you're having trouble, I may start a thread in the Facebook group. Because there's some really easy tips and techniques to make sure that you you put these insets on correctly in follow the directions. That's your best bet. But as you know, the community can help too. So we'll we'll put that in there. And of course, I'm going to put a poll up about the and we put I may have already done that by the time the episode airs, because a pull up about have you ever read the directions? I was a little embarrassed. You heard me laughing when he asked, but I'm glad he did.
Alright, I've got some news coming up about next year. Oh my gosh. But first Diabetes Connections is brought to you by Dexcom. And when we first started with Dexcom, it was back in 2013. It was about this time here, the share and follow apps were not an option. They just hadn't come out with the technology yet. So trust me when I say using share and follow make a big difference. I think it's 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 what numbers will make you text, write how long you're going to wait to call that sort of thing. That way the whole system gives everyone real peace of mind. I'll tell you what I absolutely love about Dexcom share and that is helping Benny with any issues using the data from the whole day 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.
A couple of weeks ago I told you I would have some book news and I do I am so excited to announce that the world's worst diabetes mom, part two is going to be out next year, I just signed on with my publisher. We talked this week, actually this morning, as I'm taping this episode, and we laid it all out, because my goodness, with some of the publishing issues, probably hopefully not the shipping issues by next year. But a lot of what's going out of the publishing industry, I have to have everything done earlier than I did last time to have the book Ready by a certain time of year I wanted out for as you can imagine, I wanted for November of next year, because Diabetes Awareness Month is my best bet to get any kind of, I guess, mainstream media attention on diabetes, media attention. And that worked really well. In 2019. When I put out the first book, the name of the book is not part two. I'm not sure what we're going to call it yet.
But I will be sharing that with you all, I'm going to be sharing more of the process this time around, just as I think it'll be fun. And I'm going to be sharing things like cover options and title options in the Facebook group Diabetes Connections, the group. So if you'd like to help me the community was a huge help last time around in terms of how to word things. Because you know, when you're a parent of a child with type one, there are some differences that you want to be respectful about. There's some differences and ways of wording things that that just for clarity, right? A good example is are you a T one D parent, to me, that means a parent who lives with type one, right? So you have to It's little things like that you just have to be careful about and you will help me so much with that the first time around. So I will be asking the second time around, I have an idea for a title, I kind of know what the direction is going to be. I know what the title is going to be. I know what the focus is going to be on. We're going to be addressing a lot of the things that I have been asked about since the first one came out. So really excited, a little bit nervous. But man, I loved writing the first one. So I hope this will be as much fun to put together.
All right, thank you so much to my editor John Buchenas from Audio Editing Solutions. We will be back on Wednesday. We are now live on Facebook and YouTube at 430. Eastern time. And then around 445 I'm live on Instagram. A little bit different for those of you who live on Instagram a lot like evolve. I mean, what a pain. Right? But it's fun. I like doing it. It's only a pain because I share photos. And I'm not that adept. Really. I mean, Instagram is not a friendly platform for sharing photos live and reading a script. Let me just tell you say if you've got advice on that, and you know how to do it, well, let me know. Or you could just listen to the audio podcast that comes out every Friday for in the news. Thank you so much for listening. I'm Stacey Simms. I'll see you back here soon Until then be kind to yourself.
Benny 42:35
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
-----
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----
Get the App and listen to Diabetes Connections wherever you go!
Episode transcription below:
Click here for iPhone Click here for Android
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. As always, I’m going to link up my sources in the Facebook comments – where we are live – we are also Live on YouTube and in the show notes at d-c dot com when this airs as a podcast..
XX
In the News is brought to you by The World’s Worst Diabetes Mom, Real life stories of raising a child with diabetes. Winner of the American Book Fest Prize for best new non-fiction. Available in paperback, on Kindle or as an audio book – all at Amazon.com. You can also get a big discount right now at diabetes-connections.com – use promo code celebrate to save $4
XX
Our top story this week.. More good news for mice.. and maybe some day for people. Yale researchers are looking at an oral medication for type 1 diabetes. These lucky mice had metabolic function restored and inflammation reversed. There are a lot of studies going on to make oral insulin work – liquid insulin is destroyed in the stomach before it hits the bloodstream. This research involves a nanoparticle drug vehicle that can not only bring insulin to the pancreas safely, but the casing itself has therapeutic benefits. It’s made out of an acid that seems to reduce the rogue immune cells that destroy the beta cells in the first place. The team says that the nanoparticles could also be used to carry other molecules, which could help with other conditions.
https://newatlas.com/medical/oral-insulin-pill-prevents-type-1-diabetes/
XX
A new tubeless pump is making its way through the US regulatory process. The FDA gives breakthrough device designation to AMF Medical’s Sigi (SIG-ee) Insulin Management System. This is a patch pump, like Omnipod, but it’s rechargeable and re-usable – you get two so you don’t have to go without while it’s charging.
It’s also an ACE pump, that’s alternate control enabled which means it can interact with CGMs and controller devices like smartphones. This designation isn’t FDA approval, but it should speed up the review. In the press release the company says, “Clinical study data has shown that Sigi™ is delightfully easy to use.” Which is kind of a nice thing to see in a write up like this.
XX
Big news from the UK this week – they announced everyone in England with type 1 will be eligible for CGMs covered by the National Health Service there. This was preceeded by coverage for the Libre flash glucose monitor. That program was supposed to start at 20% but almost 50% of people with type 1 have opted in and the results in terms of better health and lower a1cs have really been outstanding. Next up, leaders there say they want CGM covered for anyone using insulin, regardless of diabetes type.
https://pharmaceutical-journal.com/article/news/nice-proposes-wider-use-of-glucose-monitoring-devices-for-type-1-diabetes
XX
New research into insulin pricing is shining a light on the middle men.. many of us have known about PBMs for a long time. Researchers at USC found that drugmakers’ share of revenue from insulin sales has dropped in recent years — and a greater share is being siphoned off by pharmacy benefit managers, drugstores, wholesalers and insurers. In 2014, 30% of insulin revenue went to PBMs. By 2018, those same middlemen were receiving 53%. Terrific write up as usual by David Lazurs in the LA Times – he lives with type 1 and I always love his stuff. I’ll link this one up. The researchers here say since the PBMs are getting a greater share, there’s pressure on the drug’s manufacturers to keep raising prices so their own profits don’t suffer. It’s worth noting that these findings were possible because of newer state laws bringing greater transparency to insulin sales.
https://www.latimes.com/business/story/2021-11-30/lazarus-healthcare-insulin-prices
XX
What works to bring down the price of insulin? Ask China. They decided a round of price cuts is due and as a result, 42 insulin products from companies in China and abroad took an average 48% price drop. Otherwise, they wouldn’t have been used in that country’s public hospitals. Lilly gave up the largest discount: After a 75% reduction, the price of Humalog went down to about $3 per pen. China has been making pharma cut prices for the last few years for other medications. This is the first time insulin has really been affected.
https://www.fiercepharma.com/pharma-asia/novo-nordisk-sanofi-eli-lilly-cut-insulin-price-china-s-latest-vbp-off-patent-drugs
XX
Bigfoot releases some information and reaction to their Clinic Hub. This is how endos and clinics use the data from the Bigfoot Unity System to support patients. Unity launched this summer – it’s their smart pen program. When you think about multiple daily injections whether it’s for type 1 or type 2.. it’s hard for health care providers to see what’s going on day to day.. are doses correct, when they’re giving, etc. Unity can also include CGM data. This is the launch phase of Clinic Hub.. Bigfoot says they’ve also added streamlined patient onboarding and more flexibility for patient updates and prescription management.
https://www.drugdeliverybusiness.com/bigfoot-biomedical-touts-cloud-based-program-for-managing-diabetes/
XX
I’m including the Vertex news here.. we reported this back in October but you probably had everyone you know send you that New York Times article about a cure for type 1 – at least in one guy.. I won’t rehash everything here.. it’s about stem cells, one patient off insulin but on immunosuppressive drugs.. Personally, I’m very hopeful, but the Times write up overly simplified a lot of this, in my opinion. Good write up in Healthline that I’ll link to.
https://www.healthline.com/diabetesmine/vertex-type-1-diabetes-research
XX
In the UK lots of attention on their Strictly Come Dancing competition… when it became apparent contestant Nikita Kuzmin wasn’t hiding the Libra glucose monitor on his arm. He wasn’t hiding much.. he took off his shirt for this performance. Loads of social media comments applauding him.. for both. By the way, his dance partner, Tilly Ramsey is the daughter of professional chef Gordon Ramsey.. and they were eliminated from the show this round.
--
quick reminder that the podcast this week is with the UK co-lead on diabetes, Dr Partha Kar. We had a great chat about access and their Libre program and his whole philosophy.. really fun episode. Next week you’ll hear from the folks at ConvaTec, they make almost all the pump insets and they have some great info for us all.
you can listen to wherever you get your podcasts or if you’re listening to this as on a podcast app, just go back an episode.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.