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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Now displaying: 2022
Mar 11, 2022
It's "In the News..." Got a few minutes? Get caught up! Top story this week: Non-profit insulin announced, Tandem issues warning on some pumps, a common blood pressure med may help T1D, a potential new treatment for retinopathy and a PGA player misdiagnosed w/T2D speaks out
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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

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

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

*Click here to learn more about OMNIPOD*

*Click here to learn more about DEXCOM*

Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. we go live on social media first and then All sources linked up at diabetes dash connections dot com when this airs as a podcast.
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The news is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes. Winner of best new non-fiction at the American Book Fest and named a Book Authority best parenting book. Available in paperback, eBook or audio book at amazon.
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Non-profit drugmaker Civica expects to launch lower-cost versions of insulin in the United States. Civica said it would produce three copycat versions of insulin, and make them available at roughly the same price for all customers, once approved by U.S. health regulators.

The company's products, which would be available as both vials and pre-filled pens, are biosimilars to Sanofi Lantus, Eli Lilly's Humalog and Novo Nordisk's Novolog. The maximum price would be no more than $30 per vial and no more than $55 for a box of five pen cartridges. Civica, which was launched by seven health groups to make essential medicines available at affordable prices, expects to file for regulatory approval in 2023 with products available in 2024.
https://www.saltwire.com/atlantic-canada/news/civica-aims-to-launch-low-cost-insulin-in-us-by-2024-100701260/
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Tandem has issued an urgent field safety notice. This in Europe ONLY and is for the t-slim X2 pumps with Basil IQ technology. According to the notice, a user could inadvertently program and confirm a basal rate with an incorrectly placed decimal point. That could mean giving too much or too little insulin. Tandem says you can continue to use the pump after confirming basal rates are correct. A software update is coming. Again, this is Europe only and this is NOT an issue for any pumps on Control IQ
https://www.drugdeliverybusiness.com/tandem-diabetes-warns-on-some-tslim-x2-insulin-pumps/?fbclid=IwAR0dV04W49iQ1LavAIQMkpleif77XiVqKq7ZrhUiFTrpylem-ZHIByRN8nw
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Interesting new potential treatment for diabetic retinopathy. Retinopathy happens when the disease damages tiny blood vessels in the eye, reducing blood flow to nerve cells in the retina. Treatment can be injections or laser surgery. These scientists are looking at photo-bio-modulation – which involves irradiating the eye with far-red to near-infrared light. This increases oxygen-rich blood flow to the retinal cells. They use an LED contact lens to get the light exactly where its needed. No human tests yet.. so it’s a far way off.

https://newatlas.com/medical/led-contact-lens-diabetes-blindness/
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I don’t have much of an update about diabetes aid to Ukraine except that it’s still very much needed. If you’re so inclined, we’ll link up where you can donate. One partnership I didn’t mention last week is one between the Ministry of Health of Ukraine, a group called Direct Relief, and the International Diabetes Federation. They are working closely together to understand where supplies are short, secure donations within and deliver them quickly to where they’re needed. Lots of links to vetted organizations in the show notes and here on our fb page.
https://sparearose.org/
https://www.jdrf.org/blog/2022/03/02/helping-the-diabetes-community-in-ukraine/
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The ordinary blood pressure medication verapamil continues to show benefits in treating type 1 diabetes. Patients taking verapamil required less insulin two years after their type 1 diagnosis and also showed evidence of other surprising benefits. These researchers caution that their study is small and needs to be confirmed by larger clinical studies. There are a few other going on right now.. but the preservation of some beta cell function is very promising.
https://www.uab.edu/news/research/item/12670-an-oral-medication-shows-benefits-treating-type-1-diabetes-for-at-least-two-years-after-diagnosis
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Two pieces of good news about insurance coverage. Our friends in Ontario, Canada will finally get CGM coverage. Starting March 14th the Assistive Deices Program will cover funding for a CGM and related supplies for people with type 1 .
https://www.baytoday.ca/local-news/people-with-type-1-diabetes-to-get-government-funding-for-real-time-continuous-glucose-monitors-5126997
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And in the US military families will have pharmacy coverage for Abbott’s Free Style Libre 2 under Tricare Health. This should make the Flash Glucose Monitor available with zero copay to Tricare members. It begins next month.
https://www.pharmacytimes.com/view/military-members-families-and-retirees-get-simplified-access-to-abbott-s-freestyle-libre-2-system-through-tricare-
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Bringing some awareness of how common a misdiagnosis is when an adult has type 1 diabetes.. professional golfer JJ Spaun is speaking up. He was diagnosed with type 2 but after a couple of years of struggling he found the right doctor and the right diagnosis. He next plays in the Players Championship this weekend we’ll see if we can spot the Libre on his arm.
https://www.golfchannel.com/news/after-diabetes-misdiagnosis-jj-spaun-feeling-new-person
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Our long format episode this week is all about Pixar’s Turning Red. There are two background characters in the movie with diabetes and we’ve got the behind the scenes story why.
Next week: why the star trek community pushed a T1D kickstarter campaign over the top.
Listen wherever you get your podcasts
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

 

Mar 6, 2022

When Pixar’s new movie, Turning Red premieres, the diabetes community will probably enjoy the story, but we’ll be looking very closely at a couple of background characters. There are two with diabetes technology on their arms Diabetes isn’t part of the plot here, but it's very visible.

We can thank Susan Fong for that. She’s what’s called the Dailies and Rendering Supervisor for Turning Red. Fong lives with type 1 and she’s the one who asked to put diabetes into the movie. We talk about the team effort to get these characters on screen, the balance of math and art that is both diabetes and movie-making and a lot more.

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!
-----

Episode Transcription Below (or coming soon!)

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

*Click here to learn more about OMNIPOD*

*Click here to learn more about DEXCOM*

Stacey Simms 0:00
Diabetes Connections is brought to you by Omnipod. Simplify life with diabetes. by Dexcom. Take control of your diabetes and live life to the fullest and by Club 1921, where Diabetes Connections are made.
This is Diabetes Connections with Stacey Simms.
This week when Pixar’s new movie Turning Red premieres, the diabetes community will probably enjoy the story. But we'll be looking very closely at a couple of background characters. There are too with visible diabetes technology. Diabetes is not part of the plot here, which is kind of the point.

Susan Fong 0:45
And sometimes I think that's important. I know a lot of folks get frustrated by the number of questions. They're asked about diabetes, or can you eat that? Should you be eating that? What's that thing on your arm, and sometimes it's just nice to be who you are, and have it not be a part of.

Stacey Simms 1:01
That's Pixar’s, Susan Fung. She lives with type one. And she is the person who asked to put diabetes into Turning Red . We talk about the team effort to get these characters on screen, the balance of math and art that is both diabetes and moviemaking, and a lot more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show, always so glad to have you here. If you are new, we aim to educate and inspire about diabetes with a focus on people who use insulin. And how cool was it to see people who use insulin in the Turning Red trailer when this came out a couple of months ago, and you know, there was that first trailer, the little teaser, where we saw one child with what looked like a pump infusion set maybe on her arm. We all went bananas. But then the second trailer came out and we saw another kid with diabetes technology. It looked like a Dexcom CGM on her arm. And that prompted 1000s of posts and tons of questions. Well, we've got the answers for you this week.
My guest is Susan Fung and she is what is called the dailies and rendering supervisor for Turning Red . She'll explain what that means and how this whole process came together. Susan lives with type one she was diagnosed at age five. Her sister also has type one she was diagnosed a few years later. Susan was Pixar as sequence lead on Seoul, the rendering Supervisor of Coco and she's worked on Brave Toy Story three Wally Up Ratatouille, the list goes on and on. I am really grateful that she spent some time talking to me about diabetes and animation and a lot more.
But first Diabetes Connections is brought to you by Omni pod. You know, I'm a big fan of choice when it comes to diabetes technology. I get so excited when there's something new. Because if you live with diabetes, whatever type whatever age, you deserve to find the best fit for you. That's just one reason I'm working with Omnipod to help spread the word about their program that makes it so easy to test their system out. It's the Omnipod dash free trial. If you want to try an insulin pump or see what life without tubes is all about, you can now try Omnipod dash free for 30 days. The trial comes with no commitment or obligation, not right for you. No problem, go to diabetes connections.com and click on the Omnipod logo or go to omnipod.com/diabetes connections for details, Terms and Conditions apply for full safety risk information and free trial Terms and Conditions. Visit omnipod.com/diabetes connections.

Susan, thank you so much for joining me. I think the whole community just went bananas when we saw the trailers of the teasers for Turning Red . So to talk to you about how this all happened is just a thrill. Thanks for being here.

Susan Fong 3:55
Definitely. Yeah, thanks for having me.

Stacey Simms 3:56
Let's just jump right in. Why are there depictions of diabetes in this movie? How does this happen?

Susan Fong 4:03
We have a long history of Pixar, of trying to increase diversity and representation on screen. It's largely been motivated by folks in our characters and crowds departments who on each film have made suggestions on what we could incorporate. And I happened to be on read very early. When your supervisor you're one of the first folks to start on the film. And so given that I was on early, which is the best time to make a suggestion. I asked the crowd supervisor like hey, can we get a representation of insulin pump in this movie? And he said, Heck yeah. And then he took that back to our director, our soup tech and kind of what we can consider our production pod and the producer. They made some suggestions about what we could incorporate to increase representation on screen and everyone loved the suggestion of insulin pump. And that's how we got it in the film.

Stacey Simms 4:45
Just before we go any further sop tech.

Susan Fong 4:48
Is that a sup tech is it the supervising technical director is the supervisor of all the supervisors.

Stacey Simms 4:54
Okay. So when you were asking about an insulin pump What did you have in mind kind of to maybe sneak it in, or make it part of the story or just have it somewhere on the on the screen?

Susan Fong 5:08
Really, for me, it was just about representation. I think, you know, given that it was a kids movie, or were in middle school, we see a bunch of children on screen. It's something that I don't see, I don't see representation of myself in that way. And so even if it's not a central element of the story, to me, is just still holds value saying like, Hey, kids all look different. We all have something different about us. And this happens to represent how I'm different, at least visibly.

Stacey Simms 5:34
When I saw the trailer for Turning Red , I just thought I you know, I don't know the story. As you and I are talking, I haven't seen it yet. It has not yet been released. But even without the depiction of diabetes, you see this pre teen or tween, and then she turns into a panda. It's just such a crazy, fun representation of the madness of puberty. I mean, I assume that's what the movie really is about. And that's a time where you feel so different, whether you have diabetes or not. But having that extra stuff on you has got to be even more of a burden. So I know you were gonna talk about your story. But is that part of what you were thinking about with this kind of movie?

Susan Fong 6:11
Yes, I think that is a strong central theme is kind of that challenge of those middle school years. And what happens when you go through puberty. And it is true, that's kind of the phase when a lot of young diabetics become more self conscious, I actually did not get an insulin pump until I graduated from college, I have now had diabetes for have to do some math, I think 38 years. And so it wasn't, you know, available for me when I was that age, which meant it was a little less visible. You know, for me, the way it manifested was a blood glucose meter, always getting eat a snack maybe whenever when other folks didn't. But it did make you always stand out.

Stacey Simms 6:45
So let's talk about you. You were diagnosed when you were five years old, in the early 80s. Do you remember any of your own diagnosis?

Susan Fong 6:52
I do. And some of it I think when I describe it is likely my interpretation as an adult looking back. I you know, I did listen to one of your podcast episodes a few weeks ago, you were surprised that both folks on the show had misdiagnosis stories, well add me to that list. I came down with some sort of virus kind of standard sore throat kind of thing. We went and saw the doctor says this just a virus sent me home went back a week later, because I wasn't improving. They gave us antibiotics sent me home. Third week, when we come back, my mom was basically frantic at that point, because she could barely keep me awake. And when they tested my blood sugar, actually, the doctor took one look at me and said, Oh God, we got to get her straight to the ER, Mom rushes me to the ER. And then I'm like, basically in an attic consciousness. So I have flashes of like, remembering my mom running and screaming for help beat her up a little bit. Because my mother's amazing. Such a fighter for me, my sister is diabetic too, by the way. And so you know, I was the first to be diagnosed of the two of us. And the doctor just really kind of missed all the signs, you know, massive weight loss, massive thirst, increasing somnolence, you know, couldn't stay awake. And so when they tested my blood sugar, they couldn't, you know, return a value, it was too high to return a value. I was in about a week, I was not sent home with a blood glucose meter, which is crazy. And we were in the middle of a move, which, of course. And so shortly after diagnosis, we moved to Raleigh, North Carolina, and I was lucky to be seen at Duke University. And they were much more forward thinking in that day and age of having, you know, everyone have a blood glucose meter. And also using sliding scales for insulin, really deciding on your insulin dose based on what you were eating instead of the other way around. Right. And I remember the horror, when we moved to Atlanta, endocrinologist was like you set your own doses. But I am grateful for that foundation, you know, that Duke gave us so I think I was probably without a meter for maybe four weeks. And that thing of those first blood glucose meters back then it's like three minutes that had a wash bottle. You know, it was Yeah,

Stacey Simms 8:56
yeah. Many, many people at that time didn't have a home meter in the early 80s. Is my understanding, at least Yes. Wow. When was your sister diagnosed,

Susan Fong 9:04
she was diagnosed, right? In the preteen years, bless her heart. And you know, in our case, we recognize the signs. My sister was complaining about something to my mom, my mom said, Hey, we should check your blood sugar, and it was high. And that's always one of those things where you're testing it. But you're not really thinking about what that next moment is like, if that number pops up. And it's not what you expect.

Stacey Simms 9:26
I've talked to parents who have multiple children with type one, but very few siblings. Would you mind talking for a minute of what is that? Like? I'm sure she wanted some support from you, but you're the little sister. And then after a while you do have each other to lean on, but it still had to be devastating.

Susan Fong 9:42
I think diabetes was less intensively managed back in that day. And when I think about you know, it is a constant thought woven through every moment of my day as an adult and I think as a child, honestly, I didn't think that way. You know, it was something that you tested your blood at breakfast and dinner You took a shot at breakfast and at dinner, and there was very little thinking in between, because often what they had was you running high enough to avoid the lows, you know, so I had a few critical lows as a child, you know, one of wishes the first day that pool opens and summer. Too many hours in the pool. Yeah, Dad was flying solo that weekend, I'm sure. You know, that was part of the challenge. But it just wasn't as present in my mind. And I think, you know, as we got older, and the technologies improved, and the diabetes complications and control trial results came out. That's really when the shift happened, where we tried to become more intensively managed. And so when I look back at the diagnosis that my sister, while it's devastating, and I'm sure she was devastated, we actually didn't talk about it that much. You know, I think that's just part of the innocence of childhood.

Stacey Simms 10:47
Yeah, that makes sense. For sure. One of the things that I found when I was doing some of the research for this episode was a video of you, I think it's three years old, it might be longer, it might be older than that was Khan Academy. And you're kind of explaining your job and explaining things about, you know, how it works at Pixar. And then you talked about diabetes, and you held up the Animas vibe, which I just said off such fond memories of animals. But do you mind if I ask what technology you're using now?

Susan Fong 11:15
I'm on the Tandem T slim with Dexcom.

Stacey Simms 11:17
If you're not familiar as you listen, it went under business a few years ago. But in that video, you talk a little bit about math and diabetes and math and art and your job. I thought that was fascinating. Could you speak a little bit about how all that goes together.

Susan Fong 11:32
And again, our technology has improved. But as a diabetic, I measure almost everything I eat on a food scale. And so there's a constant exercise of math of I read the package, and it says there's 20 grams of carbohydrates for 30 grams of weight. And now on my scale, I have 60 grams of weight than how many carbs do I have. So there's constant calculations like that, that you're doing. And I've also mentioned, both in my job and in diabetes, the importance of kind of gut instinct, that the longer you're diabetic, the more comfortable you are operating on gut instinct. As I know, I should take this amount of insulin for 40 grams. But because I did this intensive fitness class this morning, I'm going to lie and take a little less. And so there's a kind of a math fine, you know, is your foundation, and it helps validate your gut instincts, but you're still going to modify things from there, it's not the end all be all. And in my job, so much of what I do is predicting the amount of farm meaning render farm cores or number of CPUs or computers, you can think of it that we need to make our film on any given day. And I start doing this forecast about three years before the film comes out. And so I am constantly playing with math, you know, figuring out if this department has this many shots to do, and this is the average cost per shot, how much farm do they need on a given day. And all of that is graphed and plotted over time. And it just reminds me so much of when I look at now my Dexcom graph on my MIT swim or on my phone, and I'm looking at these graphs, and I'm looking for anomalies like, Hey, this looks a little high, Hey, that looks a little off, hey, this is going up faster than I expect. And it's all of the same things that I'm doing at work. When I'm looking at the validation of the data, I have that gut instinct of you begin to recognize the patterns over time. And then your gut kicks in and says this pattern looks wrong to me. And that's when you dive in and figure out what you know how to

Stacey Simms 13:24
fix it. I remember when my son was diagnosed, our endocrinologist said, you know, you have to understand diabetes is just as much art as science. And I understand that kind of in theory, but the way you're talking about it really makes sense is your your work must be just as much science as art and artists science as well.

Susan Fong 13:42
Definitely. I mean, I think, you know, there's so much more art, I would say in my job, then definitely than in the world of diabetes, there's the art of gut instinct, for sure. You know, working at Pixar, I'm so lucky that the math I do, ultimately results in a pretty picture at the end of the day. And I and that is how I got interested in working for a company like Pixar is I was in undergraduate school at Georgia Tech. And I took a class that was intro to graphics. And one of the things they have you do is write a math program that draws a single pixel at a time. The technology back then that we used was called ray tracing. So I wrote a ray tracer, that first time you generate a photorealistic image, just from writing text in a text editor. It's magic, you can't believe that you can do it. And that's really what the art of rendering is. There's a lot of complex math that goes into it, some of which I am familiar with, but it's more handled by our engineers. But that math is all based on the laws of physics. And the laws of physics dictate how lighting bounces around the room, or how you know, skin is slightly translucent, if it has a light source behind it. And so those kinds of things. We have a physical measurements of real world data that inform equations that we use to replicate that on screen. So it's really kind of a fascinating place to be with math and One pence to the accountants of the world. But no. When I think of what's a career in math as a kid, that's kind of what I would think of as something like, you know, being an accountant. And that did not hold enough interest for me. For me, it was more about what can I do with math that does tie back into some of my core passions, for things like art, photography, just the beauty of the world.

Stacey Simms 15:22
It's interesting. I always wanted to be a journalist, you know, I spent my career in broadcasting. And when I was a freshman in college, one of my first assignments was, I was so lucky, they did a press tour for The Little Mermaid, the movie, it wasn't finished. But they showed a lot of the unfinished animation to us. And they talked about how difficult it was to get her hair to swirl around underwater. And I always think about that, when I watch you laughing at that.

Susan Fong 15:47
I'm not, I just I've spent I've done a lot of work on hair over the years. Okay, that is a challenge. Okay,

Stacey Simms 15:53
so when I remember they took her hair, I think about that almost every time I watch an animated movie, and I cannot believe how realistic it's getting. I cannot believe how far it's common. And you know, I know it's just the beginning is that realism that we're seeing? Is it all the computers animation getting better is it people knowing how to manipulate it better, isn't just so much, or the computer so much more powerful,

Susan Fong 16:15
it's all three. So see anything about simulation simulation of something like hair or cloth, we start with a physical space solution that our director of software engineering who has a PhD from UC Berkeley, she has written along with her team, a simulator, and that kind of is the first thing that our simulation team will will run. But there are many cases that kind of physically accurate, isn't what the director is looking for. And that's where the art of simulation comes in. Of if the director is saying they want a different shape, try to think of a good example, like in the movie Brave, when Maratha has a hood up and then pulls it back over her long curly hair. That was a very art directed shot. If you just ran a physics simulator, that's not what it would look like. And so you know, you have to learn to incorporate, you know, ways of tweaking that that base foundation to kind of give the look that you're looking for. It's really one of those things where it marries everything you've said, there's better software that you know, is based on the laws of physics, there's faster computers that can run more complex calculations. And then we evolve our artistry over time, and our simulation artists have gotten better at better at the art side of simulation, you know, sculpting the shape of a blanket or sculpting the way the shower curtain silhouette is. These are things that are more art than science.

Stacey Simms 17:33
So let's go back then to Turning Red does the diabetes that we saw depicted on the two characters does that come up in the movie at all is it in the background isn't mentioned or explained,

Susan Fong 17:44
it does not come up in the movie. It is not mentioned or explained more than one character is diabetic. One of my favorite characters that happens to be a diabetic. And you may have seen this on our second trailer is a blonde girl, her hair in a ponytail in the girls bathroom. But when Mei turns into a panda in the bathroom, she's there, and she has her infusion set on her arm. Her name Stacy Frick, you know, she's the the popular friendly girl. She accepts me for who she is, despite all her differences. And she also happens to be a diabetic. And so it's just kind of she is a more central character than we often have. When we think about different efforts, we've had that increasing representation. A lot of times it's just you know, kind of in the background on a crowds character, but species a reoccurring character, but it's not part of the story. And sometimes I think that's important. I know a lot of folks get frustrated by the number of questions. They're asked about diabetes, or you know, can you eat that? Should you be eating that? What's that thing on your arm? And sometimes it's just nice to be who you are, and have it not be a part of the story.

Stacey Simms 18:46
Okay, I'm gonna let the fact that she's named Stacy slide right by because I do not want the illusion ruined that I somehow influence that. I know I didn't. But you mentioned a couple of minutes ago that you would listen to a podcast episode where two of the women were misdiagnosed. And I'm pretty sure that was one where we talked about this movie. And we talked about representation. And specifically one of the guests was concerned about talking about this as though it was only inclusive of type one, which we all know diabetes technology is worn by people with different types of diabetes. Did that occur to you at all? And is that? Well, I'll just leave it there. Did that occur to you at all? Is that something that you had thought about?

Susan Fong 19:26
I mean, I 100% agree with Dr. Walker. I think I'm lucky that I've had exposure through my friends to type two diabetics that do read the same technology that I do. You know, one of my my good childhood friends, her mom crashed out her car when she was low, and she had never heard of a Dexcom and granted back then they were a little bit newer. But when I found out what happened, you know, I said you know about this technology. And one of the problems that we've been having over the years is having endocrinologist be open to fighting for that technology for a type two diabetic let's say to come into dependent. So I 100% agree with Dr. Walker, that it's extremely important to have that just be diabetes, and not necessarily about the type. We all have different pieces of technology that we need to use to manage ourselves. And this is just one of the tools.

Stacey Simms 20:14
I was struck to when you mentioned that you brought it up, hey, we'd like to have somebody with diabetes, visible technology in this movie. And the person next to you said, Heck yeah, let's do it. Pixar seems to really be making this push to show so many more different kinds of people, different types of people, I guess you could have a big company meeting and talk about it is it's kind of something in the air. How is that happening? And it just seems like they're doing it right.

Susan Fong 20:38
I think this goes back to the importance of having a diverse workforce. If you have diverse voices in the room, they're more likely to advocate for different things about the stories that stand out to them, where representation is lacking, or something as misrepresented. In general, in the tech industry, we've seen a groundswell of support for different diversity inclusion efforts. And we have had several talks and summits at Pixar, where we talk about different strategies to both increase our presentation, but also improve the hiring process, improve the support that folks are lent once they do start. And I think it was around that area that folks started saying, Hey, can we and crowds was our easiest place to start, because we build a giant library of different people. And so you know, over the years, we've added crutches and canes and wheelchairs, a cochlear implant on one movie. And I remember, I think it was added a few films back, but there's a shot of someone just sitting in a waiting room, you know, it's pretty large on the screen that you definitely see it. And we had a similar response to that. People just want to see the presentation of the real world. And I think given that this film, in particular, was set in toronto, toronto is an incredibly diverse city. And it gave us so many opportunities to represent represent that diversity on screen. It's a little difficult

Stacey Simms 21:55
to see in the trailer, what type of diabetes technology the characters are wearing, is that on purpose, is it supposed to be a depiction of a Dexcom or a tubed pump site? You know, my listeners are really wanting to dig deep and find this. More general, it's

Susan Fong 22:10
okay either way, unroll response on social media was overwhelming. And I took all my willpower in the world to not hop in and be like, it's not that. I appreciate everyone's curiosity. So I think one of the things that was really important to our director is being accurate to the time period in which the film was was set. And so this is the early 2000s, I was an early adopter of Dexcom. It did not look like that in the early 2000s, I think was 2004 when the Dexcom, seven first came out, they weren't widespread. And so what we see is more of our presentation of a tube pump. And one of the challenges when we we said heck yeah, and that was our crowd supervisor, Paul Candiac. And are one of our folks and characters Mara. They were both on board. But then the question and the challenge became, how often do you shoot characters waist, which is where more most people wear a pump, in film and TV, if you've watched, you know, an episode tonight, pay attention to it. We're always framing character spaces. If we put the insulin pump on the waist, I think it was going to be more challenging to actually see it. And so that kind of led to some strategizing by Mara of like, well, hey, can we put the infusion set on the arms? You know, how common is that. And I definitely had friends that did that. And it seems like a great way to make sure that even if we're shooting from the waist up, or kind of, you know, torso up, that you would still have an opportunity to see a representation of it. So it's intended to kind of be representative of a pump of that era, kind of pre CGM being quite popular.

Stacey Simms 23:41
Yeah, I had growing emotions and growing up when my son was growing up, we saw lots of kids wearing two big pump on their arms. He would never ever do that. He just drives me bonkers, like, just try it. No, but I remember we saw lots of kids doing it. I'm curious to you know, as a mom of a child with type 1 diabetes now, older teenager, my goodness, I am curious. And maybe I should ask your mom, but I'm gonna assume that your mom sees all of your movies. Yeah. And when she goes to this one, she's got two kids with type one. She seen you guys through lots of ups and downs. Not only is she got to be just so incredibly proud of you. And I'm sure if your sister, what do you think something like this means to her?

Susan Fong 24:21
That's a great question. I remember one story and I'm trying to pull it out of the recesses of my brain where my mom was explaining to someone that she had to give me a shot twice a day, and the other mother responded with I would rather die. And oh my god, no. I'm sorry. I think increasing representation helps even our parents, you know, who are fielding the same questions of just normalizing it. And I think there's a lot of misconceptions about diabetes. If you're well manage, and you know that someone is going to have birthday cake. Generally, you can figure out a way to manage that with insulin. And so there's a lot of missing conceptions that parents are often having to fight, you know about what their children with diabetes can do? And the answer is they can do everything they can to everything that kid without diabetes can, it might be a little bit harder. It might take, you know, some strategizing some trial and error, but they can do everything. A person without diabetes can. And so I think, you know, just that normalization of kids are all the same. Some of them were diabetes, tech, some of them are diabetic, some of them are not, I think could be powerful.

Stacey Simms 25:29
When I asked my listeners, what kinds of questions they wanted me to ask you, the only actual question and I'll share the thought is, was we say goodbye in a moment, but the only actual question was, will they make stuffed animals or merchandise featuring these characters? I understand. But I'm guessing the answer is probably not if they're not main characters in the movie?

Susan Fong 25:51
Probably not. I'm not a part of our kind of, I can't remember the name of the group consumer products are not a part of consumer products to know what is coming as a part of bread. But yes, I would imagine that

Stacey Simms 26:02
follow up and get the skinny on that one. And then the last question I want today, it's really wasn't about diabetes. But I'm just curious, you said you started working on this years ago, can't imagine you know, I talk into a microphone, we put the podcast episode out next week or whatever, I can't imagine the process here. What is it like for you all, when you know that people are going to finally see this movie?

Susan Fong 26:22
Oh, it's it is the moment of joy that we all wait for. It's been challenging and COVID times because we're used to being able to go out to a theater and watch it with a fresh audience. And sometimes, after you've seen a film for, for many times, through many iterations, you don't laugh at the jokes anymore, because she's kind of have absorbed them and are used to them and you're more focused on the visuals on screen and getting them approved. And so when you see with a fresh audience, it's the first time you get to see that, that reaction, it really does make your heart sing. There was an absolutely incredible moment, when the crew was watching the film. At the end of the film, when the credits come up, the band in the film named for town is singing a song, and the audience was singing back. And it was amazing. And it's yeah, it's those moments that are really, really powerful. Just, I can't even put words to what it feels like. But it's a highlight for sure.

Stacey Simms 27:22
Get not really understanding how not only animation works, but all the computer stuff you were talking about. You kind of mentioned that many people had a role in this. Can you talk about what you meant there?

Susan Fong 27:33
Yeah, so my only contribution on the insulin pump was the spark of an idea. And from that point forward, many, many artists had their hands on this. There's a process in the art department where they're pulling reference, and they're coming up with what they think that design should be. There's a process of approval, where it goes in front of the director, and approving the design, the art director approving the design, it moves into characters to actually be physically modeled as a 3d model, into shading to be shaded, to look representative of insulin pump. And then you know, the tubing and the infusion set itself are also a particular challenge, because our stimulation department had to make sure that the tube moved as the cursor moves, they had to make sure that the infusion set laid flat against the skin. And a lot of those tweaks ended up being done by both animation and our characters department who do shot sculpts, which is when you just need to tweak something to make it flush, just a tiny little, you know, adjustment. So it actually required a number of requirements to have their hands on it, to make it work. So I just really want to thank everyone that put effort into it. And I think also, you know, artists also say when they work on something like this about how much they learn, and how rewarding it is to learn about how these different pieces of assistance, topology work.

Stacey Simms 28:47
Did they call you down sometimes, like, can we look at your pump? Can we look at your CGI?

Susan Fong 28:53
You know, I helped recall the shader packet repo reference and, you know, put it up on a board to kind of decide, you know, how you're going to take the reference you see and turn it into something that is our own. And yes, I pulled a lot of the reference for for fire characters department and fielded constant questions. And I love that. One of the little things under the scenes is the infusion set was not named infusion set, because it got lost in the game of telephone. So it's called insulin injector as the name of the model.

Stacey Simms 29:22
Oh, gosh. Gosh, I really appreciate this. It was so much fun. And I'm so excited to see the movie now. I mean, we're so funny, because we're like, yeah, yeah, the plot looks great. Tell us about this five second scene.

Susan Fong 29:37
I still am very overwhelmed by social media response. And I knew it was important to me. I didn't know it would be the same for everyone.

Stacey Simms 29:46
Oh, well. It was quite the big deal. And it will continue to be so well, I said that my listeners didn't have a lot of questions. But one thing they said over and over again was to please thank Pixar. They're doing such a good job at making everyone feel rested. sent it. And everybody just said, please say thank you for doing this. And I wanted to pass those thoughts along as well. Because it really, as you saw on social media, I guess you saw the posts, it's so meaningful to people. And we really do appreciate that not only you did it, but you came on to talk about it. So Susan, thank you so much for joining me and sharing your story and for sharing your story in the movie.

Susan Fong 30:21
Of course, I appreciate it.

Stacey Simms 30:28
You're listening to Diabetes Connections with Stacey Simms.
More information as always, at diabetes connections.com. If you're new, and you're listening, maybe on a podcast app, like Apple or Spotify or something, the show notes also have a transcription and links can be kind of difficult to see in some of those players even in some of the top and most used podcast players. So if you can't find it, or it looks weird, you could always go back to diabetes connections.com. And we have a very robust search as well. If you are new, and you'd like to take a spin through all of our episodes.
I got to give a big thanks to Jim Hill. He is the host of the Disney dish podcast and fine tuning to podcasts. I really recommend if you're Disney fan, he connected me with the right people at Pixar and helped make this happen a little bit more to share about Turning Red in just a moment.
But first Diabetes Connections is brought to you by Dexcom. So my husband and I were watching a movie the other night, and we got a Dexcom alert, then he was upstairs in his room. And for some reason it took me back to the days when we basically had blood sugar checks on a timer. This was a long time ago, my son has lived with diabetes for 15 years. And we would check doing a finger stick the same time every day at home and at school. And whenever extra we needed to. It really is amazing to think about how much our diabetes management has changed with share and follow. I didn't stop the movie to get up and check on him. I knew what was going on, I could decide whether to text him or go up and help out using the shared follow apps have really helped us talk less about diabetes, which I never thought would happen with my teenager. And he loves that part too. Trust me, that is what is so great about the Dexcom system, I think for the caregiver or the spouse or the friend, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom, follow separate follow up required, go to diabetes connections.com and click on the Dexcom logo.
Just a little bit more before I let you go about Turning Red in the community response and vape a little bit more from Pixar. I'm releasing this episode a little early, which means I'm taping it a little bit early. At this point, I have submitted an op ed to a couple of national outlets. So hopefully they will be picked up. And I'll be telling you about that. But the Op Ed was about a lot of what Susan and I talked about in that interview in that Turning Red shows but doesn't tell about diabetes, how it is not a plot point, and how that's actually a bit of a breakthrough. And in the Op Ed I go on to talk about how it avoids what so many other even children's shows run into, which is a depiction of media diabetes depiction of media. That's wrong. And we talked about that a lot in the episode that Susan falling mentioned there with Dr. Heather Walker, and Dr. Phyllis duros, who was also in that episode as well had contributed a chapter to Dr. Walker's book. So I will link that episode up you can go back and hear our whole conversation about diabetes and media. Her particular take on Turning Red s depiction you just showing telling about diabetes. And that will keep you posted. If the Op Ed pops up anywhere. We also talk in the op ed a little bit more about the type how the type is not mentioned either. And I think that is important. So as you're sharing this story, remember, you know not everybody who wears an insulin pump or a CGM lives with type one diabetes, let's include people with lots of other types. There are lots of other types of diabetes. I am one and I get pushback on this a lot. And we're all entitled to our opinion. But I am one who thinks our community is much stronger together. And that means not throwing people with other types of diabetes under the bus. And all of that to say I haven't even seen the movie yet. Right? The movie hasn't been released as I'm taping this, I cannot wait. I'm sure it's going to be terrific. And you know, I'll be watching it as soon as it is released. Let me know what you think I would love to hear from you. I have a feeling we'll be talking about this for quite some time to come.
Thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. We've got in the news in just a couple of days. I do that every Wednesday live on social media and then we turn that around for a podcast episode on Fridays. These episodes are usually released these long format interview episodes every week on Tuesday. This one's snuck out a little bit early, but usually we are on Tuesdays so you can find out more on the homepage or on social media. Of course you can always follow me. I'm Stacey Simms. I'll see you back here in a couple of days until then be kind to yourself.

Benny 34:50
Diabetes Connections is a production of Stacey Simms media All Rights Reserved all wrongs avenged

Mar 4, 2022

It’s “In the News…” Got a few minutes? Get caught up! Top stories this week include: where to donate if you want to help people with diabetes in Ukraine, a look at cases of COVID-induced diabetes that seem to be temporary, Dexcom gets FDA breakthrough status for use in hospitals, insulin prices mentioned in the State of the Union, T1D college scholarships and learning more about a non-invasive glucose monitoring system called SugarBeat.

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Join us LIVE every Wednesday at 4:30pm EST

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Episode Transcription Below (or coming soon!)

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*Click here to learn more about OMNIPOD*

*Click here to learn more about DEXCOM*

Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. we go live on social media first and then All sources linked up at diabetes dash connections dot com when this airs as a podcast.
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The news is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes. Winner of best new non-fiction at the American Book Fest and named a Book Authority best parenting book. Available in paperback, eBook or audio book at amazon.
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Our top story.. a lot of you were asking about help for people with diabetes in Ukraine. I didn’t jump right into this last week because I get very concerned about scams. We hate to think anything about diabetes isn’t on the up and up.. but we need to be careful. I was really glad to see Insulin for Life, which is very well known and well-run, stepping in here. And easy way to donate to them is through Spare a Rose for Ukraine. This is the annual campaign centered around valentine’s day that usually runs through February.. they’re extending it through March. All donations will be directed to Insulin for Life, a registered charity with over two decades of experience providing insulin and diabetes supplies to under-resourced countries, and responding to emergencies. Their international consortium and network in Europe, with partners in Ukraine and neighboring countries, has supplies ready to go if, when and where needed.
https://sparearose.org/
https://www.jdrf.org/blog/2022/03/02/helping-the-diabetes-community-in-ukraine/
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As doctors learn more about people who develop COVID-related diabetes they’re finding blood sugar returns to normal a few months later. Researchers studied 600 patients who showed signs of diabetes while hospitalized for COVID-19, including 78 with no previous diagnosis of diabetes. Compared to patients with pre-existing diabetes, many of the newly diagnosed patients had less severe blood sugar issues but more serious COVID-19. Roughly a year after leaving the hospital, 40% of the newly diagnosed patients had gone back to blood sugar levels considered non-diabetic.
https://www.reuters.com/business/healthcare-pharmaceuticals/covid-related-diabetes-may-be-temporary-racial-disparities-widen-with-omicron-2022-02-25/
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Scotland has nearly 2-million people in a huge ongoing COVID study. The latest info from that shows no association with a COVID infection causing type 1 diabetes in children less than 16 years old. Type 1 in children increased to about 1.2 times the average during the pandemic but it doesn’t seem to have been caused by COVID. The US CDC has said otherwise, that there does seem to be a causal link between COVID and type 1. In all the studies so far, getting a COVID vaccine was not associated with incidence of type 1 diabetes
https://www.medscape.com/viewarticle/969166
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Good news about using the Dexcom CGM in the hospital. The FDA has granted Breakthrough Device Designation for Dexcom for healthcare professionals to monitor and manage glucose levels… in adults who use insulin while in the hospital. We first talked about this in 2020 when the FDA temporarily allowed hospital CGM use because of COVID. Dexcom created a special page on their website to provide resources to clinicians.. I’ll link that up.
https://www.dexcom.com/hospitalcovid-19
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Researchers say they’re making progress into amyloid, a key molecule in the pancreas that contributes to type 2. For the first time, scientists say they’ve uncovered the step-by-step changes that take place in a molecule known as human islet amyloid polypeptide. It’s helpful in the body until it changes into a more damaging form. The researchers said their findings, raise the possibility of new treatments for type 2 diabetes and other amyloid-related diseases such as Alzheimer’s

https://www.medscape.com/viewarticle/969265
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There is a huge psychological barrier against starting insulin for those with type 2. A new web-based resource is hoping to help with that. One in four adults with type 2 report being unwilling to start insulin once it’s recommended. These Australian researchers designed an online resource called “Is insulin right for me?” They went through eight psychological barriers like “does insulin mean my diabetes is more serious?” Then they went through the educational process around each. This was a very small study – fewer than 40 people- but the response was positive enough to continue toward a broader roll out. Editorial here – I speak to people all the time who feel like starting insulin is a failure of will power. I get it, we should all eat better and exercise more.. but no one feels the same shame about blood pressure medication. I’m glad to see this getting some attention.
https://www.healio.com/news/endocrinology/20220228/online-education-may-ease-insulin-fears-of-adults-with-type-2-diabetes
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The price of insulin came up in the State of the Union speech this week. President Biden talking about lowering prescription drugs and capping the price of insulin for the insured. He singled out 7th grader Joshua Davis from Virginia, who was diagnosed with Type 1 diabetes when he was 11 months old. Joshua’s father also lives with type 1 and the family were guests of the first lady during the state of the union. It’s not clear if any of the measures to lower prescription drugs will actually get through congress.
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We’re keeping up the non-invasive glucose monitoring news.. and the latest contender is sort of an old one. The My Sugar Watch is said to be moving forward and could be available this year. MySugarWatch is a licensee of the BEAT sensor, also known as SugarBEAT, from Nemaura Medical.

The SugarBEAT CGM has been around for a while, getting its CE Mark European approval in 2019. It’s a small patch that sticks onto your skin for 24 hours, then you replace it. The transmitter sends wireless readings to a smartphone app via Bluetooth every 5 minutes. They submitted to the FDA in early 2020.. with what looks like an updated submission last year. No word on a timeline or US rollout.
https://www.notebookcheck.net/MySugarWatch-needle-free-continuous-glucose-monitor-for-type-2-diabetes-on-the-cards-as-award-winning-Nemaura-posts-encouraging-financials.605046.0.html
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If you’ve got a high school senior with type 1 – you may want to check out Diabetes Scholars. Applications are open now. There is one application to be considered for any and all of the scholarships.. it closes March 27th. You must be a high school senior with Type 1 diabetes seeking a higher education at an accredited two or four year university, college, technical or trade school in the United States. And you must be a US citizen or permanent resident.
https://diabetesscholars.org/
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Our long format episode this week is all about Eversense – we take a deep dive into this implanted CGM system. The FDA just approved the E3 which lasts 180 days – six months – with no sensor changes. Next week? The real story behind the character with diabetes in Pixar’s turning red.
Listen wherever you get your podcasts.
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

Mar 1, 2022

In February, the FDA approved the Eversense E3 for 180 day wear. That means you could have a CGM working – with no sensor changes needed – for up to six months. That’s been available in Europe for a while, but in the US it’s been a maximum of three months. As you’ll hear, the people at Eversense have even bigger goals.

This week, you'll hear from Senseonics Chief Medical Officer, Dr. Fran Kaufman. We get the basic info about the device, the plan for working with pump companies, a look ahead and much more. Imagine one year without a sensor change!

Dr. Kaufman is also a practicing endocrinologist and she’s been seeing patients for more than 40 years. She has a passion for this community and a lot to say about what truly helps patients thrive with diabetes.

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!
-----

Episode Transcription Below (or coming soon!)

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

*Click here to learn more about OMNIPOD*

*Click here to learn more about DEXCOM*

Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921, where Diabetes Connections are made.
This is Diabetes Connections with Stacey Simms
This week Eversense is an implantable continuous glucose monitor. It just got FDA approval for a 180 day where that's six months with the dose sensor changes. Something else that makes it different. It can vibrate to let you know if you're low or high.

Dr. Fran Kaufman 0:39
And then people really, really enjoy that long term concept, as well as vibratory alerts. We've got people who work on the tarmac at the airport and they can't hear anything. So the only way they can actually do this is with the vibratory alerts.

Stacey Simms 0:52
That's the company's chief medical officer, Dr. Fran Kaufman, we go in depth on the Eversense system talking about how it all works, accuracy, and looking ahead to whether they'll partner with any insulin pumps for a closed loop. And they have big plans to make the system last even longer. 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. Oh, we so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new, my son was diagnosed with type one right before he turned two that was back in 2006. He is now 17 years old. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast.
And I have been doing this podcast since June of 2015. I looked back in the show archives. They're all on the website. You can use a search box to find what you're looking for. But I looked back and we first talked to Eversense in October of 2018. We actually talked about Eversense at that time, not with the company. I talked to Darryl Greene. He was one of the first people in the US to get the sensor implanted. He is a news anchor. And he did it for his show, he showed the video of the implant the whole thing. I will link that up in the show notes so you can hear what Darrell had to say at the time and see an early version of Eversenseit has changed a bit since then.
But as you will hear this week, it is subcutaneous it's just under the skin. And that is where the Dexcom or libre or Medtronic Guardian sensor lies, but you can't insert it yourself. It is a quick outpatient procedure. It's minor but it is still a procedure. The flip side that's it for six months, no supply orders, no changing sensors. My guest here to talk about it and answer a bunch of your questions is Dr. Fred Kaufman. She is the Chief Medical Officer of sin psionics. The company that makes Eversense she is a pediatric endocrinologist who still sees patients and I could take the whole episode to read off her accomplishments. She's been in practice for 40 years, director of the comprehensive childhood Diabetes Center and head of the Center for endocrinology, diabetes and metabolism at Children's Hospital Los Angeles, former president of the American Diabetes Association, chair of the National Diabetes Education Program, on and on. And she has authored over 250 Scientific manuscripts and numerous books. I love talking to people like Dr. Kaufman, because yes, she's a very accomplished woman. She obviously knows her stuff. But you will hear her passion for this community. She is really in it to help all patients living with diabetes.
Quick note, I realized, as I was listening back, I do that a lot with these interviews for editing and you know, editorial reasons, I didn't ask about the capacity to share the sensor data in real time, right share and follow for something like this, Eversense has had that for a while. They don't use the same terms. They call it Eversense Now. And that doesn't change with the three the latest iteration of Eversense does have the capacity for other people to follow the user’s numbers. And I know that's important to a lot of you. I didn't want to imply that it isn't available by leaving it out of this interview. So you don't hear about it. That's on me. But it is there.
Here's my interview with Dr. Kaufman.

Dr. Kaufman, thank you so much for joining me. There's so much to learn about this system. My listeners are very interested. Thanks for spending some time with us.

Dr. Fran Kaufman 4:30
Well, thanks for having me.

Stacey Simms 4:31
I would usually start by asking you to talk about the latest and greatest this FDA approval that came through. But let's back up just for a minute. For people who are not familiar. Can you take us through what the system consists of here kind of set the table of what we're talking about when we say ever since? Well, I'd

Dr. Fran Kaufman 4:48
love to because I think understanding the system really enables you to understand this new innovation we have with our Eversense three system, the overall Eversense CGM Is three components. It is a fully implanted sensor very small, it's about three millimeters by 13 millimeters, and it's placed under the skin in the subcutaneous space, which is where all the sensors are working. They're all measuring the same glucose values in that interstitial space in what we call the interstitial fluid. But this is placed minor office procedure done by healthcare providers that we train and certify, we also give them the tools to be able to do both the insertion. And then when the time comes the removal of the sensor and the insertion of the next sensor. That's the center. It is a fluorescent technology, all the other CGM systems are enzymatic. So that is another distinguishing feature for us, and then placed over the sensor with a very mild silicone-based adhesive is a transmitter and the transmitter through near field energy powers the center, and that enables the sensor to read the interstitial glucose, give it back to the transmitter, the transmitter then sends it to the app on your smartphone. And that's where you can visualize your glucose value. But our transmitter held in place, again with a very mild silicone-based adhesive. So there are fewer skin reactions, also has a very unique capability of on body vibratory alerts. So if you don't have to have your smartphone sitting in your lap, you want to run upstairs for something you want to run outside, you want to take a bike ride without your cell phone, then you will get the alerts right on body, the transmitter itself will vibrate. And you'll know whether you're going high or low with your glucose values. And that's a feature that many many people truly enjoy and appreciate. And then the app is pretty much like all the apps, you can view your glucose every five minutes, the arrows for the directional change of your glucose-to-glucose curve for the last three hours, six hours, whatever you'd like. And it also, of course, has alert both auditory as well as visual on the cell phone itself. So those are the three major components and lots that differentiate us.

Stacey Simms 7:16
Yeah, I let me go through a little bit of what you said kind of break it down even further, you mentioned that the sensor uses something different to measure glucose level this is based on light or fluorescence, can you kind of explain that a little bit more or as much as you can, some of its proprietary,

Dr. Fran Kaufman 7:34
you well, and then lay terms so that I can understand it. I am a physician at OSI you know not a an engineer. But essentially, this sensor is composed of a sensing surface where glucose attaches reversibly dependent on how much glucose the sensor is exposed to at that point in time. And of course, this interstitial fluid is moving. So you know it's bringing glucose continuously to the sensing surface. And then the power is to turn on little LEDs that light up that sensing surface in a full arrest by how much glucose is attached. And that fluorescence n is equal to the concentration of glucose.

Stacey Simms 8:18
Can you see that under your skin? Can you see that happening? Do like is there like a little light show going on?

Dr. Fran Kaufman 8:23
No. Other Yep. Could it be cool?

Stacey Simms 8:29
Maybe that's an add on feature for the future. I'd also heard this was a while ago. So this may have changed. I had heard that earlier iteration of this technology made it that it was sensitive to light. In other words, if you were exposing that site to sunlight a lot, it didn't work as well. Well. So

Dr. Fran Kaufman 8:45
there it rarely occurs. But there is something called an ambient light alert, if there is a lot of sun exposure. And this is mainly because that tape is peeling. So the sides of the transmitter are a little bit more exposed. It will pick up in ambient light tell you what can't reliably read the glucose and ask you to you know, either cover it or you know, get out of the sunlight.

Stacey Simms 9:09
Also, if, as I said, kind of going through it step by step of what you mentioned, let's talk a little bit more about how the transmitter connects. I saw someone on Instagram recently showing how it is, for lack of a better word seems very easy to Ristic she was kind of taking it on and off on and off quickly showing how easy and how different it is. Does that sound accurate? In other words, I think we're used to these devices staying on and we want to stick them as tight as humanly possible and then we rip them off like a really tight bandage. This is very different.

Dr. Fran Kaufman 9:40
Well this is very different so it's not holding the sensor in place right the sensor is fully implanted. So if this falls off, you do not lose a sensor. You just place it back on so the adhesive tape you know obviously sticks on one side to you on the other side to the transmitter and a few hit a door way or Your reference tumbling with your kids and a falls off, you can just place it right back on to that same adhesive. Or if you need a new adhesive, you know, there, you're just carrying a one little piece of adhesive in your purse or in your pocket. And that's all you really need to carry around with you.

Stacey Simms 10:16
I don't know if this will ring a bell with you. But it seems to me like your color forms, which were like kind of stickers, but kind of not you could take them on and off a few times. That's what this reminds me of.

Dr. Fran Kaufman 10:27
I'm not sure exactly know what you mean. But what what this is, is something that's very mild on the skin, we do ask you to replace it every day, take it off, clean the skin, let it breathe for a little bit while you're taking your shower, drying off and then place it right back on. So it's not that you have a piece of tape on for now what will be six months, you're changing that tape and letting the skin breathe. And of course, the tape is breathable as well.

Stacey Simms 10:55
That's a great point. I didn't want to imply that when I say take it on and off a bunch of times that it's more than a day. What changed recently, what did the FDA approve, that got everybody so excited?

Dr. Fran Kaufman 11:05
Well, we're like everybody, right? We are continuously innovating listening to the voice of our customer who is the person with diabetes healthcare provider. And one of the things we continuously heard was people want a sensor that lasts even longer. I mean, we're lasting 90 days in the US, it was already 180 days outside of the US. But for both, this is the next iteration for both. So this is our really, we call it a three because it's really our third sensor iteration. So some chemistry changed is you can imagine some of the other little minor things also changed. But the major change was in that sensing surface, allowing it to have a chemistry change that enables it to last really reliably for the six month time period. You know, whenever we put something in the body, the body reacts, and the way the body reacts to our sensor and the other sensors is it kind of oxidizes it, it surrounds it, it does a lot of other things to it. This chemistry change enables that reaction to be less significant over time, so that the sensing capability remains really excellent for a much longer period of time before we can get the six month indication. Talk to me a little

Stacey Simms 12:23
bit about the clinical trials that I'm sure were done for this when you're talking about six months. The questions my listeners had mostly about this was like, well, what could go wrong? Right? What if I want to get this taken out? Or what if it irritates me, it tell me a little bit about the people who've already done this.

Dr. Fran Kaufman 12:39
So there's our clinical trial, the promise trial that involved 181 individuals wearing actually more than one sensor for the most part. And then there's our vast really commercial experience both outside the US as well as the inside of the US where 1000s of patients have used the sensors. worse, worse, worst worst case scenario, you decide you don't want to have a CGM at all you can get it removed, or you could actually leave it in place till the time duration is up and get it removed, then there's really no compelling indication that you have to get it removed right away. If you don't want it or if it stops working. It actually is kind of okay as a permanent implant. Although that is not what we're asking people to do. We are asking them, as well as the FDA asking them to get it removed when the time comes. So that would be worst case scenario. For the most part, once it's placed in the skin, the skin is healed. Again, the mild adhesive on the scan, really, people enjoy it want it needed if but our system, rather than have no sensor at all, if you decide for a period of time, you don't want to wear the transmitter. Maybe you're getting married, maybe you're going to Hawaii and you willing to go without your CGM, which of course, for me and my patients, that would be a big no, no, then you can just take the transmitter off, charge it, then put it in a drawer and put it back on when you come back home. So it gives you that option. If you don't want to wear the transmitter to take it off for a period of time, or take it off, you know, an hour a day or two hours a day, whatever you'd like to do. There's a lot more flexibility because you're not losing the sensor at that point.

Stacey Simms 14:23
Yeah, talk to me about that, because I'm imagining and I've shared this on the show before my son is very interested in this, especially because of sports and wrestling in particular, he thought it would be so great to be able to take the transmitter on and off. Well, you haven't off. You've already mentioned the sensor will still alert you you know it'll vibrate.

Dr. Fran Kaufman 14:39
As soon as that transmitter is off. You do not get any sensor readings at all. So

Stacey Simms 14:45
my mistake. Yeah, my mistake. I thought for some reason it vibrated under the skin even without it.

Dr. Fran Kaufman 14:49
No, no, it's not the sensors not vibrating in your body. It's a transmitter on top of your skin that's vibrating.

Stacey Simms 14:55
Got it. Okay, talk to us a little bit about accuracy. What you found commercially as you mentioned clinical trials. I think my listeners are pretty familiar with Mark. But can you speak to that?

Dr. Fran Kaufman 15:04
Absolutely. I have been in the field of diabetes since 1978. So I'm old. And I'm really proud of it. And I've seen so much what I started with animal insulin and urine testing. And obviously, what I've seen in my own career a lifetime is awe inspiring. Unfortunately, it hasn't gotten us all where we want to be, which is done with this disease all together. But it has made obviously management. So much more important, easier, better, difficult, whatever you want to say. But we do now have a lot of tools and technology that can improve people's management. One of them is CGM. And those early CGM, which I was involved with, when I was in academic medicine, as an investigator were wonderful, you couldn't rely on them to make a dose adjustment, for sure. But you could get patterns and trends and see what was kind of happening overnight, it was really an amazing advancement, then as the accuracy continued to get better for these devices, we were able to look at a point in time and say, That's what my glucose value is, I can dose off that glucose value, which of course is what you're able to do with our sensor. And then you got more and more accuracy. And now, that's what you know, really, your value is. So our accuracy is measured by Maher during our promise trial. And one of the issues we have to face is, the longer the duration the sensor last, the longer our clinical trials have to last. So if you got a sensor that last seven days, your trial seven days, if it last 14 days, your trials, 14 days, in the last 180 days, your trials, 180 days, and one day, we'll get up to 365. So we'll have these really long trials that will be arduous for the patient and our clinical investigators, and a long time to get the results. But so for the six month trial, people came in 10 times about 10 hours each time, we drove them high and low, so that we could get across the sensor life as well as across all the glucose values from 40 to 400. To see the accuracy of our EversenseII three system and the MAR turnout overall to be 8.5, which is excellent. We're really happy with that Mart, it's you know, it's among best in class for CGM center available. And as always, the mart is leased. On the first day, of course, we only have one first day every six months, whereas sensors it's every week or every 10 days or every 14 days. And then it really settles down and all the way till the end of sensor life. 180 days they are busy was at that point still below eight, below eight below eight. Wow, you know, you have to put all the seven days first. So we did first day seven, day 14, day 21, day 30, day 60, day 90 day 120 150 and 180 day evaluation. So when you put all those together, it turns out to be a mark of 8.5. And then of course it's in the hypo range, we had an excellent mark, also a little bit less than eight in the hyper we had an excellent Mark less than eight. So it really is a pretty excellent system.

Stacey Simms 18:24
Is it simplistic to assume that gets better as it goes? Or does it get better for a certain point, and then it gets a little higher? Well, actually,

Dr. Fran Kaufman 18:32
we could have assumed that. But it turns out it's highest at the beginning and then pretty much stayed around the low aids, high sevens the rest of the time period.

Stacey Simms 18:42
I'll confirm this. But I don't believe any other CGM in the US has a mark that is under eight. I don't know that you can talk about it like that, as you said it's 8.5 for the whole life of the sensor. But that's really interesting.

Dr. Fran Kaufman 18:54
Well, there are depending on the conditions and other things. There are some marks that are under eight as well. And does Mark need to be five is marking to be six, we're probably pretty close to good enough, or excellent enough in that eight range. You know, when we started March, the first month was I think 25. Yeah,

Stacey Simms 19:16
yeah, it's come a long way. Yeah. Talk to us about calibration. The system does need to be calibrated, but the E three less than before.

Dr. Fran Kaufman 19:24
Absolutely. So as you can imagine a sensor lasting 180 days and when we get to the year long sensor, we'll likely not ever be able to get away from any kind of calibration. Now we're hoping with 108 with a 365 Our year long sensor, which will be a real Mark change to some of the platform configurations that we might be able to only have to calibrate once a week. But right now we're at a calibration of for the first 21 days it's twice a day. So the first calibration is really easy. You wake up in the morning, you take the transmitter off, it does need to be charged. It takes about 10 to 15 minutes charge to take your shower, you clean your skin, it put the transmitter back on, and you do your calibration. And then 12 hours later, you need another calibration for the first 21 days. And then after that it's mainly one calibration a day.

Stacey Simms 20:20
I'm pausing because I'm intrigued. We'll have to come back later to the 365. Okay, we talked about what's next is the goal, ultimately, no calibration, or you've already kind of hinted that as it gets longer and longer where you don't anticipate with a year long sensor you anticipate continuing to have to have some kind but but once a month is the goal. Yeah, hello,

Dr. Fran Kaufman 20:38
once we start once a week, we're not exactly sure. But it's hard to imagine that we would have something that long, that would not require some calibration.

Stacey Simms 20:50
Let's talk a little bit about one of the biggest questions that my listeners sent in, which was, when will this work with my pump? Do you have any plan? I mean, I'm assuming you have plans in place. But I let you jump in, you already started to answer

Dr. Fran Kaufman 21:02
it. Yeah, well, that's obviously our goal, as well. And so we're working towards that I can't really give a timeframe because it's not just dependent on us. And as you can imagine, some of the companies coming out or are just trying to get their first product out that first iteration. So they'll be a bit of a lag, but we're doing everything we can to facilitate it. I do have

Stacey Simms 21:25
to be nosy I understand if you can answer this, any of the existing pump companies in the US on the table with you? Well, we help

Dr. Fran Kaufman 21:31
every pump come and he's going to be on the table with us when you know when the time comes.

Stacey Simms 21:35
And what would have to happen. Is there another designation? Is it IC GM that you all need to get?

Dr. Fran Kaufman 21:40
It's pretty much IC GM. And then of course, even once you get that you've got to do some coordination with the pump companies open the API, how do they talk to each other, it is a bit away. But we're working on it, trust me.

Stacey Simms 21:55
My husband was joking last night, when I was telling him we were going to speak and he was like, gosh, all then they need to implant the pump. Because I put it all under the skin. I was like, you know what you're getting ahead of yourself. Like let's,

Dr. Fran Kaufman 22:05
you know, it is interesting, when you talk to cardiologists, you know, everything they have is implanted. When you talk to endocrinologist, they're not quite as familiar with the concept of implanting things. And the reason the implant makes so much sense is is one is you can't knock it off, it's obviously easy to put in and to retrieve, and it takes some of the burden. You may have to calibrate. But you don't have to change sensors every week or every other week. And it takes you don't have to order things anymore. So there's a trade off on our goal, which is to make life easier, more simple for people with diabetes. So that implant does in and of itself make things in a different framework, where I just don't have to, I travel, I don't have take anything but my little adhesive patches, versus somebody otherwise has to take a half their suitcase full of sensors.

Stacey Simms 22:59
Yeah. You mentioned endocrinologist and the implant? How is the physician training going? And Pardon my ignorance? Is it an endocrinologist that you trained to do this? Is it another kind of Doctor Who puts it in?

Dr. Fran Kaufman 23:09
Well, if the answer is yes to all of that, so endocrinologists have come forth and been interested in learning how to do it, you were not the only implantable drug or the you know, system that they have. They've got the implantable birth control. So some that are very, very interested love during the procedure kind of gets back to why they wanted to be physicians. And then others of course, who don't feel they want to really do it. So they're, they refer their patients to somebody who is doing it. So it mainly endocrinologist, we've got dermatologists, primary care, you name it, and they are there, as well as not just physicians and osteopathic doctors, but also nurse practitioners and physician's assistants do it as well.

Stacey Simms 23:53
I remember when we first started talking about this a few years ago, there were very few doctors who did it. I remember talking to our endo here, he was like, I don't know anybody in Charlotte, I'm imagining that that is changed. Do you have any numbers? Or how people would find out if it's done in their area?

Dr. Fran Kaufman 24:07
Well, absolutely, we can help them find out if it's done in their area if their own physician isn't doing it. But we certainly have picked up more and more physicians when a patient comes to the doctor and says, you know, hey, you know about this, I saw it, I'm really captivated by some of its qualities and differentiators. And the doc says, I don't know much let me contact and they contact us. We talked about, you know what it would be like to become a procedure list. And many of them say yes, so we have been able to increase the number of people learning how to do the procedure, particularly in some of the large groups and the large practices. A lot of them just really enjoy that aspect of medicine that they hadn't done maybe for a while and certainly the new endocrinologists coming out they're much more technology based than people my generation. What Chris wants to be my generation of retired do not intend to do. They want to have a procedure, they want to be able to break up the day, and many of them in their practices, you know, do it like Wednesday afternoons or Friday mornings, to accommodate their patients. And of course, they get reimbursed for that part of their time part of their, you know, they need to be trained, it's a way to be a little closer to your patients in some way. A couple of that clinicians have told me, it's enhanced my relationship with some of my patients, when you know, we have that opportunity for me to really impact in this significant way. Yeah,

Stacey Simms 25:33
that makes sense. You mentioned supplies, I was also thinking about costs when you said that, because write anything with a surgical procedure, even though it's very minor is going to have a cost associated with it. But I was assumed that's balanced out by as you said, you're not ordering supplies, you're not getting new stuff. Every couple of weeks. Can you talk a little bit about the insurance side of this is this well covered,

Dr. Fran Kaufman 25:53
it is well covered, we'd like it to be universally covered. We're working towards that as well. As you can imagine, we have a whole group of people, some insights, and CX mainly with our partner associate diabetes care, who is our partner in the sales and marketing of the Eversense CGM systems. And now of course, very, very excited about having Eversensethe three, so they're, they're working hard with the payers as well. Medicare pays for it. I think we have over 200 million covered lives. And we're hoping to be able to continue to have every insurance company cover this. Now if your insurance company doesn't cover it, there's appeals that can occur. And for the most part, those appeals work because the insurance company realizes the benefit of patients having CGM and we're, you know, really differentiated. So who's a patient who wants to use an implanted CGM, somebody who you know just travels a lot and doesn't want to worry about reordering, just want to put something in themselves, for whatever reason, dexterity cognitive, just don't like taking out all those needles and looking at them and putting things in themselves. And then people really, really enjoy that long term concept, as well as vibratory alerts, we've got people who work on the tarmac at the airport, and they can't hear anything. So the only way they can actually do this is with the vibratory alerts, do you really have somebody

Stacey Simms 27:18
who's works at an airport like that? We do. That's just fabulous.

Dr. Fran Kaufman 27:23
And these are some of the people who have come forth. And you know, they're our ambassadors. Somebody works in an elevator shaft and can't have anything big on their body. And this enables them to be down there and still feel the vibratory alert,

Stacey Simms 27:38
I have a bunch of questions that are more forward looking. But before we kind of move on to that, I'd be curious what you have learned. I mean, the system has been around in a shorter wear form since 2016, in Europe, and I'm curious, what has changed? or what have you learned from the people who have used it?

Dr. Fran Kaufman 27:56
Well, what's been really interesting is once somebody gets their second sensor, they're hooked for life. You know, there are some who use it, and then meal wasn't right for them. The same with other CGM, the same with pumps the same with any kind of technology. But once somebody said, I like my first one, let me get a second one, then they're pretty much hooked for life. And what are they want, they want longer duration, with the same level of accuracy, people really appreciate the accuracy of our system. As a result, they continue to use it. We've got patients on their 10th 15th I don't even know how many sensors, some of them I've had they've were on early and have never left.

Stacey Simms 28:36
Does it always go in the same place? Is it always on the arm and then they just kind of switch back and forth to either arm? They do.

Dr. Fran Kaufman 28:42
And I'm probably the only one who can say this and say I'm a physician. There are of course as always off label use of things.

Stacey Simms 28:51
Okay, we will leave that there. But very interesting. This might be a very dumb question. Can you go through airport sensors with this, you know, the the different devices, metal detectors, all that kind of stuff?

Dr. Fran Kaufman 29:02
You can you can even have a MRI, you know, the other sensors need to be removed for an MRI, but you must remove the transmitter.

Stacey Simms 29:09
Got it? That's interesting, and MRI and X rays and all that. Yep. Without the transmitter on, you've already mentioned that the the goal here is longer were one whole year. That's something that you all are working toward. I'm curious to, again, not to bring this personal or anything. My son is not yet 18. And he's been talking about this for a while, are you looking into pediatrics,

Dr. Fran Kaufman 29:31
we are looking to be there too. So we're hoping to have our 365 Day sensor in clinical trial in 2022. It's our hope we're working towards it. And that will have a pediatric component.

Stacey Simms 29:46
You've already alluded to the fact that you've been in diabetes for a while, you know, you worked directly with patients. I'm curious, could you give us some perspective on this? I mean, there are some people that look at a device like Eversenseand say yes, give me I want that, you know, for my child for myself. This is terrific. There are others who are squeamish about it can't possibly think about it just aren't interested. I'm curious when you were thinking about your patients, you know, how do you talk to them about things like this? Do you see patients anymore?

Dr. Fran Kaufman 30:12
I do see patients, I couldn't imagine not seeing patients. And I have, I will admit, I've been very unusual and that I've been out of my academic practice since 2009. And I'm still seeing my same patients and picking up some new ones here and there. You know, everybody has what they think is going to work for them. They try things, maybe it does work, maybe it doesn't work. But what I think what kind of captivates somebody about Eversenseis that it is long term, no longer does the patient have to worry about reordering and where they're going to be on Saturday, because they've got to change their sensor. And what happens if the sensor comes out early, where's the, you know, all those kinds of issues. So with a fully implantable sensor, it's there, and it's in there, lots of people like that as kind of really reducing some of the burden of diabetes for them. You know, once they hear about that, and they hear about, you know, if I want to I can take off the transmitter without sacrificing I like the idea, I don't have to have my phone with me all the time. I mean, just all these advantages kind of Captivate many, many people. And as a result, they want that opportunity. And once they have it and they see those advantages, they stick with it, for the most part, it has to be the right person I you know, we are by no means saying that 90% of people who are on intensive insulin management should be using ever since. But probably 1015 20% should be. And when you look at really kind of what the recommendations are now as a healthcare provider for me to manage my patients on intensive insulin, it's hard to imagine doing it without a CGM. That means you know, there's 1.6 million type ones they all likely need to CGM. 3 million type twos likely need a CGM, with all that number of patients, there need to be choices, there need to be differentiators, not just the same over and over again, whether it's seven days, or 10 days or 14 days. And that's really where we're kind of captivating the healthcare provider, as well as captivating the patient, I'd love for

Stacey Simms 32:17
you to come back on perhaps without, with maybe half the Eversensehat on and what I'm getting at is to talk to somebody like yourself, who has been in this world for so long, who has seen a lot of changes, who has adapted with and help their patients take advantage of all of the changes that have come through, I feel like it's an opportunity to really kind of dig into more about diabetes. So hope you don't mind if I call you again in the future.

Dr. Fran Kaufman 32:39
I'd love to I'll probably have a little bit of a bonnet on for what we

Stacey Simms 32:45
can make that that's fine. We can go with that. But before I let you go here, let me ask you about it. I don't know if you've seen new patients anymore. But when you talk to your patients, you know, I assume I'm just picturing. Gosh, I know I'm not trying to butter you up, I promise but lucky patients, right, they've got an endo, who's passionate, who really cares about this, who's really you know, we were lucky to have one as well like that, when you're talking to your patients these days. So much technology has changed in just the last five years and so much more cool stuff is coming. I assume you don't just focus on that tech, right? You're not just hey, here's a CGM go home. Can you give us kind of a peek into what you think makes a really good start or really good continuation? Or I guess it's a really good plan for people living with type one right now?

Dr. Fran Kaufman 33:29
Yeah, well, I mean, yeah, probably the most important thing is to find support. Nobody can do this alone, ever. I don't care how old you are. I don't care how independent you think you are. And whether that support is with your healthcare team, with your family members. I mean, it's all the better when it's multi faceted. I'm very involved with my patients, they all have my home phone number call me whenever they want text me all day long, mainly because it's such a burden that we transfer over to them on a we teach them we do this diabetes education, you know, stay in this lane, don't go too high. Don't go too low. Don't eat that. Don't you know, don't do this. And it's hard. And they really need support. So you know, camps, groups, your podcast. I mean, what a difference all this makes. And I really had to say what's the biggest difference I've seen over my career, it's that we've gotten diabetes into the open, people aren't hiding it anymore. And as a result, it's part of normal life. And it's trials and tribulations, the time it takes isn't as difficult when people can see the benefit and feel that support in their community, their parents, their friends, their spouse, their co workers. And I think for the most part, people are fascinated by the technology when you show it to them when I patient show it to them very interested in helping out however they can. And that's to me the biggest change when I First of my career, we spend so much time trying to tell people not to hide diabetes. When I patient told me the other day, she's just got a new job, she brought her co workers together, show them her sensor, her meter her glucagon. And, you know, kind of felt it was a badge of honor that they offered to learn about, uh, to help her if need be. And she felt, you know, kind of automatically brought into a community of people who care and I think the vast, vast, vast majority of people do care. And then of course, the technology is just the advances have been monumental, since I've been met, began my career patients being involved in their care doing what needs to be done, looking towards the future, understanding their own lab tests, coming with questions. I mean, that's that's where the fun is. I was in clinic yesterday, I saw a relatively new patient, he's about nine. And you know, the father is the fact what he's has learned. These two parents have learned in a short period of time, I rivals what my fellows can learn.

Stacey Simms 36:07
You know, I said, I was going to ask you this one question and let you go. But I have to follow up with Why are you still working? You said, I'm never going to retire. You already said that. You're like, that's it? Why are you so passionate about this?

Dr. Fran Kaufman 36:18
Well, first of all, I'm in my early 70s, which is the new 40s I think, I feel great. And I have spent so much of my career getting to where I am and the understanding, I personally have that, what would I do all day? Why wouldn't I want to continue to do whatever I can. And that's just how I am, I guess, and what my friends have retired, and they're happy, and they're doing what they need to be doing. I mean, the beauty of my end of the age spectrum is that you can do what you want. There's no I have to go to school, or I should get married, and I got to get a job. I mean, by this time, you get to do what you want. Finally,

Stacey Simms 36:58
where are we lucky? This is what you want to do. Gosh, thank you so much for joining me. I'd love to have you back. You can bring your bonnet, and we'll work

Dr. Fran Kaufman 37:05
it out. Okay,

Stacey Simms 37:06
thank you so much.
You're listening to Diabetes Connections with Stacey Simms.
More information about Eversense three at diabetes connections.com. Wherever you are listening, there should be extensive show notes. If not, you can always go back to diabetes connections.com. And check out the episode homepage,
I reached out to Darryl Greene, the gentleman that I spoke to a couple of years ago to get his thoughts on what he thinks of the system now. So I'm going to report back and let you know what he thinks if he's still using it. And if you are using EversenseI'd love to hear from you as well, I will also link up a couple of reviews that were in the community a couple of years ago for an earlier version. But if you are in Europe, perhaps you've been using the 180 day for a while or you're newer, you want to use the E three in the US as it rolls out. Let me know I'd love to follow up because there's so much curiosity about this system. And for so many people, it comes down to the actual procedure. Right, once it's in, people seem to love it. The questions people have are about how does the procedure go is easy to find a doctor is it easy to get it removed. So I'd love to hear from you if you have experience in that way.
All right. Coming up, I want to give you a sneak peek into what we're talking about next week. And that is all about Pixar is Turning Red. And boy, I'm so excited about the show I have for you. But first Diabetes Connections is brought to you by Dexcom. And when we first started with Dexcom, and that was in December of 2013, long time ago now, shared follow ups were not an option. They hadn't released that technology yet. I know that using sharing follow makes a big difference. I think it's really important though, to talk to the person you're following or sharing with and get comfortable with how you want to use the system. Even if you're following your young child. I mean, Benny was nine when we started with that. These are great conversations to have and they change over time. What number are you going to text your kid at how long you're going to wait to call your spouse that sort of thing. And that way the whole system gives everybody real peace of mind. I have loved helping Benny with any blood glucose issues using the data from the whole day and night. And not just one moment. Internet connectivity is required to access separate Dexcom follow app to learn more, go to diabetes connections.com and click on the Dexcom logo.

Next week's episode is one I cannot wait to share with you it is all about Pixar’s Turning Red. If you're not familiar, the plot of this movie has nothing to do with diabetes. It's all about adolescents. You know there's a girl she turns into a giant panda red panda when she gets excited and then she has to become to turn back unto herself. I don't know any more than that because I haven't seen the movie yet. But I do know is as you've seen if you see the trailers that there are two what they call background characters with diabetes technology. And as soon as we saw that trailer, there were two of them that were released. Actually, the diabetes community went bananas. And I used some of my contacts to reach out to Pixar. So I have an interview with the person at Pixar who is responsible for this.
I've seen a lot of interesting rumors online. It is not John Lasseter, he is no longer with Pixar. He is the former CEO there and he has a child with type blenders probably an adult now, he was responsible for developing Elsa in Frozen from a bad guy. She was supposed to be real villain in that movie to a much more sympathetic character with powers she could control because Lasseter saw a parallel to diabetes in that character. His son has diabetes. It's something that he didn't choose, right didn't want, but it's a part of him. And it doesn't make them bad. And he saw that parallel and Elsa and it helped guide the character. And I'll link that up. He's talked about that publicly before if you're not familiar with that story, but it wasn't him. And it wasn't a person on set or a voice actor who had a child with type one. I can't tell you more because it is embargoed until a little bit closer to the movies release. But I am going to put the episode out early.
So here's how the schedule is gonna go. We're gonna have in the news that will be Wednesday live on social media, I do it you can watch it on Facebook, LinkedIn, YouTube and Instagram. And that becomes an audio only episode that will be released on Friday. And then on Sunday, March 6, I will be releasing the following weeks long format interview episode in advance of the march 11th release of turning red. If you follow or subscribe to the show different podcast apps use different terminology, you will get it no problem it'll automatically come to you if you follow me on social media. You'll see it if you subscribe to the newsletter. If you don't, that's the best way really to keep in touch with me off of social media, you can subscribe just by going to diabetes connections.com and scrolling all the way down or the pop up will come up but the the newsletter will go out to remind you so I'm really excited about that. I'm thrilled to have had this interview and to get more insight and I hope we've made a new friend for the show. I know she listens I'm rubbish even say that but I hope she sticks around.
Alright, that'll do it. Thanks as always to my editor John Bukenas from audio editing solutions. And thank you so much for listening. A lot coming by we'll see you back here soon Until then be kind to yourself.

Benny 42:23
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

Feb 25, 2022

It’s “In the News…” Got a few minutes? Get caught up! Top stories this week include: a look at Vitamin D in newly diagnosed kids with type 1, new study about bariatric surgery, type 2 and COVID, endos are the top specialty adopting telehealth and a look at a new movie about type 1 - find out why it also has backing from the Star Trek community!

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Episode Transcription Below (or coming soon!)

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OMNIPOD

DEXCOM

Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. If you’re new we go live on social media first and then All sources linked up at diabetes dash connections dot com when this airs as a podcast.
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Looking to get organized? Diabetes supplies can really add up and all that pump and CGM stuff or even shots and wipes and strips can clutter everything up. I’ve got a great new guide to help you out. It’ll get you started and keep you organized. That’s totally free and it’s over on the podcast homepage.
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A new study adds to the idea that Vitamin D might help with type 1 diabetes in kids. These researchers look at young people ages 10-21 and found that a supplement of Vitamin D2 may improve insulin sensitivity and slow the increase of A1C for those newly diagnosed. This was over the course of a year. Very small study, fewer than 40 kids and teens, and all of them diagnosed for three months or less. A lot more to learn here.. but the study is in the Journal of the Endocrine Society.
https://www.healio.com/news/endocrinology/20220221/vitamin-d2-supplement-may-slow-progression-of-newonset-type-1-diabetes-in-children
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This is more business news.. but something to keep an eye on.. RosVivo has signed with Eli Lilly for commercial development. Rosvivo has a drug said to be a game changer to treat diabetes and obesity. Lilly will now review and move it forward. The drug is said to restore the function of beta cells that secrete insulin, the cause of diabetes, and at the same time lowering insulin resistance. Animal studies only but we’re keeping an eye on this one.
https://finance.yahoo.com/news/rosvivo-therapeutics-inc-signed-material-125200372.html
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Provention Bio has resubmitted the Biologics License Application (BLA) for teplizumab. This is the drug that shows a delay of clinical type 1 diabetes for three years. The FDA said “no” last year.. but it did so in a way that left the door open, so Provention has done what’s been asked and is now resubmitting. The CEO says quote - “We continue to proceed with a sense of urgency, recognizing that significant unmet need exists for patients and their caregivers.”
https://www.empr.com/home/news/drugs-in-the-pipeline/provention-bio-resubmits-bla-for-teplizumab-to-delay-type-1-diabetes/
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The link between high blood pressure and diabetes seems to come down to a small protein cell. An international team shows this glucagon like peptide called GLP-1 pairs up the body’s control of blood sugar and blood pressure. Doctors have known for a long time that high blood pressure and diabetes go together, but this is the first time the reason for that has been found in the body. GLP-1 is released from the wall of the gut after eating. It also stimulates a small sensory organ in the neck. These researchers say GLP-1 is just the start for more study.
https://scitechdaily.com/long-standing-enigma-finally-cracked-link-discovered-between-high-blood-pressure-and-diabetes/
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More support for bariatric surgery as a treatment for type 2 diabetes. A study found that adults with obesity who had weight loss surgery and achieved “substantial weight loss” before contracting COVID reduced their risk for severe infection by 60% compared to those who didn’t have surgery. The study was conducted by researchers at the Cleveland Clinic. Previous studies have found that in obese patients with type 2, bariatric surgery sends it into remission more than 75% percent of cases.
https://blogs.bcm.edu/2022/02/21/bariatric-surgery-helps-with-diabetes-leads-to-better-covid-outcomes-study-finds/
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Throughout the COVID 19 pandemic, endocrinologists have had the highest rates of… telehealth adoption. This study released by Doximity – we’ve spoken to them on the show – looked at telehealth claims from January 2020 to June of 2021. As expected, younger physicians used telehealth more than their older counterparts. And they say the research shows that telehealth can successfully help manage diabetes – and that it even lowers A1C in people with type 2. They don’t say why.. but I’d think it’s because it’s easier to get a visit in remotely. Interestingly they also did a top five for metro areas with the highest telehealth adoption. They were: Boston, Baltimore, Charlotte, Philly and San Francisco.
https://mhealthintelligence.com/news/telehealth-adoption-highest-among-diabetes-gi-care-providers
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The World Health Organization is looking for people living with diabetes for an international focus group. They say they hope to foster solidarity and policy action between people living with diabetes, while acknowledging and highlighting differences in treatment and management needs between different types of diabetes. The focus group will be held March 9 and 10 live and online. We’ve linked up the survey you need to fill out to be considered.
https://extranet.who.int/dataformv3/index.php/257838?lang=en
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An ambitious project to make a movie about type 1 diabetes in a dystopian world is moving along via kickstarter. Noah Averbach-Katz is an actor and writer and has lived with type 1 for more than 20 years. He says too often a disabled person is reduced to a plot point - a problem that gives the abled hero an opportunity to save the day. He wants to tell a story that captures the fears, trials, and experiences of a Type 1 diabetic. The Star Trek community is rallying behind this – Averback Katz and his wife Mary Wiseman are both part of the Star Trek Discovery series. The kickstarter goes until March 24th.
https://www.kickstarter.com/projects/noahak/type-1
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As we hinted last week, Omnipod has a fun crossover with Nintendo. The very popular Switch game, Animal Crossing now has a new diabetes-themed designed by Insulet. It’s known as Omnipod Bay, you add it to the game with a special code. Omnipod Bay features booths from selected diabetes charities as well outfits, diabetes supply bags and diabetes-themed areas and activities. I asked – no little podcast headphone as of this time! The game add-on comes just two weeks after Insulet’s Omnipod 5, was cleared by the FDA.
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Our long format episode this week is with the Lauren Bongiorno, a diabetes health coach who is a terrific example of why it’s not a great idea to aim for perfect with diabetes. She shares how her A1C was basically perfect during college but that she… was miserable. And next week.. all about Eversense, the 6 month CGM.
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That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

Feb 22, 2022

Lauren Bongiorno was diagnosed with type 1 as a child and growing up, she showed every sign of success. She was a division one athlete, playing soccer in college and achieved the lowest A1C her endo had seen in a college student.. but while her care team celebrated that 5.7, she was miserable.

Lauren shares how she took control and got that happiness back. She’s now a Diabetes Coach at her company, Risely. We talk about some common pitfalls, the pressure to be perfect and what coaching really means.
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!
-----

Episode Transcription Below (or coming soon!)

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

OMNIPOD

DEXCOM

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Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921 Where Diabetes Connections are made.
This is Diabetes Connections with Stacey Simms.
This week, Lauren Bongiorno was diagnosed with type one as a child and growing up she showed every sign of success. She was a division one athlete playing soccer in college and achieved the lowest A1C her endo had ever seen in a college kid. But while her care team celebrated, she was miserable.

Lauren Bongiorno 0:41
And I was sitting there and it was like literally an out of body experience because I'm watching like the doctor, high five, my mom and my five each other and I was like, I'm not happy, I'm not happy.

Stacey Simms 0:52
Lauren shares how she took control and got that happiness back. She's now a diabetes coach. We talk about some common pitfalls, the pressure to be perfect and what coaching really means. 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. As I'm taping the intro to this episode. I am like you sifting through some FDA approvals these seem to be coming in fast and furious now or at least as fast and furious as the FDA does anything. But after a very long logjam, you know, this is all stopped up by COVID. It really seems like things are moving along. So to that end, this episode will not focus on tandems mobile bolus, which was just approved, you know, bolus by phone or the ever since CGM 180 day where approval. Those were the two biggies over the last week. And I am going to focus on them in upcoming episodes ever since should actually be next week. And Tandem a couple of weeks after that. As always, if you'd like to get your questions asked please join us in the Facebook group Diabetes Connections, the group if you're not on Facebook, no problem. Shoot me an email Stacey at diabetes connections.com. I have my own set of questions. But I always want to hear from you. And your questions are always fantastic. So please send them in.
But there is a lot more to diabetes than technology. You all know that. And I wanted to share Lauren Bongiorno’s story, because I think this really resonates for parents of kids with type one. And for adults with diabetes, nobody's harder on us than we are on ourselves, right and the pursuit of perfection. It's just gonna mess you up. I'll let Lauren share her story. But just for background, She is the CEO and head coach at a company she founded called Risely that's a bit of a play on how in diabetes arise isn't a good thing. You know, an arrow up on your CGM, a higher A1C , their website says type 1 diabetes has given rise a bad reputation. But we think it's time we reclaim it. I think that's really clever. And I think this is the first time I've spoken with a health coach on the show. So we talk about what exactly that is, and why somebody would choose to work with a coach along with a medical provider. Here's my talk with Lauren Bongiorno.

Lauren, thanks for spending some time with me and my listeners. I'm so excited to talk to you.

Lauren Bongiorno 3:33
Oh, thank you so much for having me on. Stacey. I'm so looking forward to this conversation. Yeah, I

Stacey Simms 3:38
feel like I've we've connected and I've seen you, you know, all over social media. So I'm, I'm really excited to kind of hear more of your story and share your experiences. Because just the little bit that I know, I feel like you're kind of the embodiment of why perfect doesn't always work out with diabetes, if I could say that.

Lauren Bongiorno 3:56
Yeah, I think you can say that. And it's so interesting, because I think that if there's one thread of my entire life that I can really look at, it's this striving for perfection, and then getting too close to perfect and realizing, Oh, wait, this is not what I wanted. So definitely applies to diabetes, for sure.

Stacey Simms 4:17
Well, let's back up and explain what we're talking about here. Let's start closer to the beginning. You were diagnosed at age seven. Do you remember any of that?

Lauren Bongiorno 4:24
Yeah, I definitely remember it. I remember it was the day after Halloween. I remember my mom being on the phone with my dad in the kitchen and I had just had a tantrum and I think she was trying to figure out if it was a seven year old tantrum or if it was a something's wrong tantrum. And I had been losing a lot of weight and when you're seven years old, and I was really like skinny as a child and you lose, you know, 20 pounds, there's definitely some signs that something else may be going on and I was drinking so much water and I remember hearing my mom, you know, talk to my dad and have them deciding To take you to the doctor, so I went to my regular pediatricians office, and I was sitting there. And the distinct memory I have is of my mom and the doctor on the other side of the door and my mom hysterical crying. And if you know, my mom, she's like the strongest woman, she is a like, so independent, so strong. And I don't think that was the first time I ever heard her cry, or at least I remember her ever crying. So I was like, Oh, something is wrong. And then I ended up in the hospital, stay there for a few days. And when you're a kid, and you have everybody around you crying and saying, it's going to be okay, and you're so strong. And you also at the same time, don't really understand what that means. It sets you up for an interesting and interesting path and an interesting life. And definitely now looking back a lot of things that I think I didn't realize was going on in my mindset, and in my own personal development and relationship with diabetes.

Stacey Simms 5:53
And so fast forward to a story that you tell on your website, which is when you were in college, and kind of realized that this was not sustainable. But I'm curious between seven and 19. Were you that model diabetes kid?

Lauren Bongiorno 6:05
Yeah, that's actually the phase I don't talk about as much. And it's interesting, because I think it's the phase that most people and most of our clients that rise they relate to. And so that stage from seven to 18 really was, it was me just being in a very reactionary mode with my diabetes. So it was like, Oh, your blood sugar is high. Shoot, let's correct it and get it down. Oh, shoot, it's low. Alright, let's drink some juice really fast. So you can get back on the soccer field. And it was very kind of ping pong lead. And I never fully felt like I had the energy or the mood that I think that I could have in hindsight now, because I didn't realize like how much that Ping Pong was impacting me. And I also really didn't care. Like for me what was most important and for my parents, and what they instilled in me was a, you're gonna do anything you want in life, diabetes isn't going to stop you. And B, as long as when you go to the doctor, your a one C is in a good place, then you're good and you're in you're healthy. And my a one C was never crazy. It was always in the high sixes, low sevens. And that was before CGM. Right? I was diagnosed 21 years ago. And so there was no really concept of time and range being more important than a one C and and things like that. I think that during that time, it was a lot of because I didn't want diabetes to stop me. I took that as don't slow down to pay attention to your diabetes, it was very much do the bare minimal to keep your numbers not from being crazy, but just in a healthy range or healthy to your doctor standards or to your parents standards. And that time of ping pong up and down. When I eventually got to college, I realized that wait a second, I'm playing I was recruited to play division one soccer in college, it was the first time that I really started to connect my mind and my body and my numbers. And really realizing that I was not taught a lot about my whole body like this whole body approach of food and nutrition and glycemic index and eating for energy and eating for better blood sugars and exercise for specifically insulin sensitivity and what happens with weight training. And we're working out you know, two times a day when you're playing soccer in college. And those exercises are impacting my blood sugars in different ways than I had seen in the past. And I was trying to compete with a lot of other players for spots. And now my blood sugar's 300. And now I have a disadvantage. And I didn't like that because I was a very competitive person. And I took this as an opportunity to become more independent and tuned in to my diabetes and crafted in a way that would make me feel successful and would make me feel in control. And as an effect of that, what I did was I became obsessed, I became obsessed with my numbers obsessed with the food that I was putting in my body, obsessed with exercising, like over exercising all of this to the point where I actually lost my menstrual cycle for four years because my body fat percentage was so low, and it wasn't like I wasn't eating it wasn't like I was suffering from an eating disorder. In that sense. It was literally just a disorder of almost like perfection, in the name of wanting to control my diabetes in my numbers so badly. And when you start to see the results of that you're like, Okay, I'm doing this right. And that is a story I tell a lot and a lot of people know is I came home from college I think I was a sophomore junior in college. I had my endocrinologist checkup and you know, when you're a teenager your parents still come to the endocrinologist with you sometimes the doctor and so I remember sitting on the chair and my mom next to me and the doctor coming in who is my pediatrician kind of doctor from my dad. The doctor from a from childhood. And she was like her hands were in the air. And she was like Lauren, I have never seen a college student with a 5.7 a one. See, this is A1C you've ever had this is incredible. How did you do it? She like calls the nurse and the nurse comes in. She's like, can you talk to my other patient like in the UK, this other girl in the other room who's in who's in college and her agency is in great. And I was sitting there and it was like, literally an out of body experience. Because I'm watching like the doctor, high five, my mom and my five each other. And I was like, I'm not happy. I'm not happy. And you often think that your blood sugar's being perfect, or your agency being perfect. That is the sign of happiness, it's a sign of hell, that's a sign of perfection. I know you've made it. And I would never ever want to put my body through what it went through and go back to that place. And it was really because of my mindset. It was my mindset, it had nothing to do with a 5.7 a one C because my last day one C most recently was a 5.6.

Totally different plays, I eat pizza, I have doughnuts, I have, you know, I want to have a fabulous relationship with exercise and with food. So it's all about the intention behind what you're doing. And that's what I realize most in that moment.

Stacey Simms 11:21
I have so many questions, Lauren. How did you get them from I mean, you're still very young at 19. I'm thinking my daughter is 20. My son is almost 17 at 19. How did you get from I have this great agency. And I'm not happy to now. And I'm sure it was a journey I'm sure didn't happen overnight to I have a great agency. And I'm happy with I mean even pizza and I'm exercising the way I want to.

Right back to Lauren, but first Diabetes Connections is brought to you by Dexcom. It's really hard to remember what things were like for us before we started using the Dexcom. I mean, I haven't forgotten at what I mean is it is so different. Now, when it was a toddler, we were doing something like 10 finger sticks a day. Even when he got older, we still did at least six to eight every day and you know more when he wasn't feeling well or when something was off. But with each iteration of Dexcom, we've done fewer and fewer sticks. The Dexcom G six eliminates finger sticks for calibration and diabetes treatment decisions. I think all the time about Betty's little worn out fingertips. And it makes me so glad that Dexcom has helped us come so far, his fingertips are now healthy and smooth, which I never thought would happen when he was in preschool. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions, learn more, go to diabetes connections.com and click on the Dexcom logo. Now back to Lauren. She's talking about how she found her way to being more kind to her body and to herself.

Lauren Bongiorno 12:58
I would say that it was definitely a culmination of a few different things. The first thing was the real that moment really was a defining moment for me. But it also just opened up more ways of thinking about my life. And my just understanding of myself. I had started doing yoga around that time in college and Yoga does this incredible thing of giving you space to really watch your body and watch your patterns and watch your thoughts without judgment that's like at the root of the philosophy of yoga, or at least one of them. And what I realized was I wasn't happy with myself and with my identity, that diabetes was something that my whole life I kind of pushed away and it was always in the background, but I never fully accepted it. And if you don't accept the body that you're in, in my experience, you try to overcompensate in other areas. So you try to overcompensate in being perfect with food being perfect with exercise being perfect with your blood sugars. And ultimately, I had this like moment at the doctor's office where I just looked it's almost like a flashback in a movie where I looked back in my time so far in college and I'm like everybody is going out and having fun and I'm like saying no to going out to dinner with friends so I can make my organic broccoli and fish or whatever it was because I was didn't want to be tempted by having bread or pasta at this like restaurant they were going to or I would you know not want to stay out late or even like drinking college I didn't drink a lot like barely drank in college because I wanted to go to a 6am yoga class next day because I know that that really benefited my mind and my body in the way that I thought it needed to. And I just realized that I didn't want to live a life that a wasn't sustainable and be I wasn't happy. Like I think that it's important to understand your core values and I think my values were shifting away from perfection and approval of others or approval. Have my doctor my family and like more of being a little bit of a renegade and being like, well what do I want my life to look like? What do I want my relationship to food look like what I want my relationship to just everything that I do look like and what came out of that was this realization that what I was doing didn't match up and so what I was doing it wasn't sustainable if I wanted to lead a healthy and happy life and so I wanted to find a way of how could I have a healthy diabetes you know journey with my blood sugar's and not have complications later on in life and not have be in that phase in my life where I was from seven to 18, where I was just paying palming all over the place and not being aware of my blood sugar's not having predictability and those types of things. And how could I also not be on the other end of the spectrum where I was super restrictive, obsessive over health, there had to be a happy medium, there had to be a better way. And I had tried so many different diets at that point, high carb, low fat keto, high fat, low carb, like don't eat bread, don't eat process, this so many packaged food, but I realized that it was just exhausting. It was exhausting to try to apply it an outer rulebook to my life, and I wanted to start looking at my inner knowledge and creating that rulebook for myself.

Stacey Simms 16:17
Let's talk a little bit about coaching. Can you explain a little bit about what coaching is because I'm, as a parent of a kid with type one we have only ever, like, seen the endocrinologist. And then I've relied on our educator, and, frankly, the diabetes online community. What's a coach,

Lauren Bongiorno 16:34
of course, so a coach really is somebody who is helping you with accountability is helping support you in getting to the vision that you have for yourself, and is there to reflect back patterns and observations and help you with behavior change. So for example, a lot of parents of kids that we work with in our programs, they're coming because they realize, okay, we see our endocrinologist or a doctor a few times a year, and there's so much time in between that we want to be able to understand how to get our child's numbers better overnight, or in the morning time or when they're going to play sports. And we know that it's really about like the day to day things and not so much the let's go to the doctor and just depend on on them to tell us everything, we want to essentially take ownership over this and understand what's happening with their hormones with their insulin sensitivity with their, you know, time of the month, if they're females who are going through that phase that can be really challenging or just growth spurts in general, with nutrition and all this knowledge. So I really Riselywe focus on a behavior change, be published research, and then see our client data that we've had since 2015. And it's a lot of of work of a combination of mindset, and the blood sugars and the emotional impact that diabetes has on you. So you can think of it as a supplement to your endocrinologist, your CDE. And you're an a therapist or a mental health provider. If you have that.

Stacey Simms 18:05
I get a little nervous when people who don't have a medical degree are helping but at the same time, I understand that. Like I said, I got most of our information from the community right when I started a Dexcom on my son at age nine. I didn't call the Endo. I mean, I literally put it on Twitter, and was like, I don't understand this. Can you help me? What am I looking for? So I'm kind of speaking out of both sides of my mouth, Lauren. But I guess the Frank question is, talk to me about helping people with type one as a coach, when you are not a diabetes educator when you know you do not have a medical degree?

Lauren Bongiorno 18:39
Hmm, I absolutely love this question. All the coaches on our team are nationally board certified health coaches with that at the root health coaching is about helping you get unstuck by helping you develop the tools and the strategies to become aware of your blocks and your patterns so that you can move toward that vision that you have for yourself or for your child. A lot of times people know what they should be doing. Right? They know, when you slow down you take time what's happening with your blood sugar's what we're doing is we provide a space for you that is a dedicated space and dedicated time to slow down and hold you accountable for looking at your Dexcom clarity and looking through the patterns of your blood sugar. Your child's blood sugar's for the past two weeks and saying, Oh, wow, we didn't even realize that at 8am Every morning or 7am when they get on the school bus that their blood sugar is is really spiking and we're rushing, right, we're rushing to get out at the door. So we're not giving them a pre bolus. We're not doing drinking water in the morning or we're having, you know, just a waffle instead of maybe adding a little bit of protein in that and let's get curious what would happen if you did X, Y and Z Right? Or putting them in the driver's seat most of the time and saying what do you think would change the outcomes for these numbers? Like what are the things things that you've noticed have worked for you that you want to be doing more. It's identifying the gaps in your knowledge, giving them the accountability and the relatability, to somebody living with diabetes, as all our coaches do that they need, and helping them with the implementation and creating sustainable change. We've coached over 350 clients over the past six years now. And if you look at all that client data, it speaks, and it says something. And what it says is that there is a need for coaching, because diabetes is a condition where it is impacting you 24/7. And depending on seeing your doctor, which the health care system in America specifically is very much a top down model approach, where you're sitting there and you're waiting to receive, receive your next move, receive what your basal changes receive what you should do next, it doesn't set you up for success, the education that diagnosis doesn't set you up for success, the touch base with your doctor doesn't set you up for independence. And we have a choice to either follow that or to create a new system and create a new way. And that's essentially what we're doing.

Stacey Simms 21:09
So let me ask you some specific questions. If I could like kind of pick your coaching brain here. This time of year, without diabetes, many of us are thinking about changing what we eat. I'm going to diet this year, I'm going to lose that weight I gained I'm going to and it never works. Because I think we all know that that kind of FAD dieting or that short term stuff doesn't work, but we do it anyway. Can you speak a little bit? Because you've been successful with this, you know, you mentioned you wouldn't go out to eat with your friends, because you had to eat a certain way at home? How do you get there? How do you create those changes that really do make a long term difference,

Lauren Bongiorno 21:45
I think that we have to stop thinking that there's this next one thing, this next diet, this next outer rule book or whatnot, that is going to be the solution to all of our problems with our methodology and coaching specifically, and in my own personal life, what has made the biggest difference is really holistically looking at the areas of your life that impact your health, from your relationships to your self worth and your self love to your with diabetes, it's nutrition and relationship with food. It's stress management, it's your sleep, it's your hormones and your understanding of all of that it's a holistic approach, and a holistic approach. It can't happen overnight. And so diets and things like that with food, if you've tried to do it in the past, and you've gotten through, like, you know, up to Wednesday, and then you're like, shoot falling down. More is like, Alright, we're gonna go over like on Monday, which like we've all been there, it's so fascinating that we keep going back to doing that same thing instead of realizing, wow, that doesn't work, right. And so what I like to say is, don't set a goal that has anything to do with a metric, whether it's weight, or even with a one C and like, specifically, set the vision that you have for yourself. And if you set the vision that you have for yourself, like how do they feel? How do they what do they look like? What how are they operating from day to day? What are they thinking like, who are they at their core, then you start making decisions on a day to day basis that support that vision and there's less pressure and when there's less pressure of like, oh, shoot my a one C or my you know, blood sugar isn't better than it was yesterday, when I woke up or the weight, the scale is a second today than it was yesterday, there's more chance of actually lasting longer, because you're not going to feel as defeated. So if you want to feel somebody who is energized, and who is, you know, really fitting good in their clothes, or just confident set that as your vision of yourself, and then on a day to day basis focus on doing things that support that vision.

Stacey Simms 23:54
Let me ask you if I could, and this will be for people who live with type one, you know, adults, young adults, older adults, but not parents yet, like we'll get to them later. Can you give us some advice, perhaps or a couple of tips to have, you know, like more confidence with type one. And as you said, like not necessarily how to get your agency down or more time in range, but just like some good stuff for this year.

Lauren Bongiorno 24:14
Yeah, I love that. So I would say the first thing is to lean into your diabetes. So many of us often think that the diabetes part is the shadow part of us and it's the part that we have to hide and we have to push away and if that is your underlying belief that I can't be loved if people know that I have diabetes, or if I'm showing my insulin pump or I won't be accepted onto the soccer team or football team or whatever it is. If that is your like subconscious root belief, then you're going to operate from that place and you're not going to want to be checking your blood sugar in public you're going to wait until after you're done eating with your friends or drinking to the bathroom and give yourself you know a shot or give yourself your insulin and setting yourself up for you know higher blood triggers all night long. So there are so many benefits of just leaning in. And coming from a place of me for years hiding my pump, not letting people know that I had diabetes and not telling my now fiance until three months in that I had diabetes, it is so freeing, and such a relief when you can just show up as your full self. And it has benefits of obviously your mindset, and how confident you are and of your numbers as well. So I say I would think that that's the first tip I would have because it's a more of a mindset, emotional tip that will take you so far. And then on a number standpoint, I would say to focus on 1/4 of the day. Diabetes is like a Rubik's cube where there's 1000 different is that there's at any one given time, I described it recently as being interviewed for an article and they were asking me to describe but a day in the life of diabetes. And I essentially said it's like a seesaw with 50 Different factors piling up on either side at any given time, and you trying to find the centerpiece, right. So there are so many different factors. And the idea is is to not get overwhelmed by all those factors. Because if you're overwhelmed, you're going to be paralyzed, and you're not going to do anything, and you're not going to want to move forward and you're going to feel defeated. So try to look at 1/4, the day that maybe it's your most out of range section, whether it's overnight, morning, afternoon or evening, and just commit to working on that. Just commit to maybe pre bolusing at dinner time or commit to actually putting your CGM alarm on or on a different ringtone. So you wake up in the middle of the night, if it's high, since that's like the longest amount of time you want, you want to be arranged essentially, for your overall health, choose that 1/4 of the day, and then once you nail that, then move on to the next piece. But diabetes is always this thing that it's continuous learning, and you want to be able to have the energy to sustain until there is a cure. And we don't have to lower your agency five points, or three points, or even two points in the next 30 days or 90 days we can work rather on building the habits that support that a one C.

Stacey Simms 27:13
What is your advice to parents of kids with type one in the new year? Like what should we be thinking? How can we help our kids like grow up? This is a big challenge. Happy, Healthy, independent, not too worried about diabetes, but worried about

Lauren Bongiorno 27:26
oh my gosh, yes. And we were talking about this off air. See where it's interesting, because we've coached so many people who are in their 20s 30s 40s 50s and beyond who have had diabetes since they were kids. And we've seen a lot of their challenges that they're coming to us with today that a lot of it is rooted in their childhood and how their maybe parents kind of or their their caregivers or their doctors spoke about diabetes to them or how they were trained to relate to their diabetes. And so when we see the parents of T Wendy kids in our group coaching program, or in our one on one programs, we're watching and we're we're seeing how they're relating to their child's diabetes and what their child is how they're related to their diabetes, and we're able to help shape them in a better direction, so that they're not ending up where the kid is, you know, 30 years old coming back to us being like my, you know, my mom, did you when I was coaching with you guys when I was younger, and I've been and I feel like I need to come back. Right? Like it's, it's helping them now. And still, those things that we wish as coaches and the older people in our programs wish that they had when they were children. So I think there's a few different messages that I would share. One is your goal as a parent is not to help your child avoid suffering, and avoid all the highs and all the lows and all those things all the time, your goal and your job is to be there for them in a way where they feel like they can talk to you, they can come to you. And you could observe maybe what you're seeing in their blood sugars or in their behavior in a teammate kind of way. So kids are going through so much with their hormones and with development, and especially in their preteen and teenage years just fitting in, in general. And then when you add diabetes on top of it, it's there's this extra layer that just comes with it. And so one of my least favorite things is when you hear a parent or a doctor say off that child, they're just being so non compliant, right? They're just they're not testing their sugar, they're not doing this, they're they're just not being responsible. We have to put stricter rules on them or we can't let them go out or we can't do that. That isn't going to help. Right what they you really need to do is to help them get to the root of why they're feeling that way and why they're behaving that way. So one thing that I we work a lot with on with parents is on helping them understand what their child's goals are, which for a lot of them it's to have the cupcake at school with their friends or to be able to go out and have a sleepover with their friends and not have their mom call them 26 times, right? Which I always joke about, because I'm like, now there's Dexcom share, when I was a child trying to have a sleepover, my mom didn't even have Dexcom to like, look at, I'm pretty sure she sat in the car outside the person's house for like, the whole entire night. It's valid, right and those in the kids and what they want, it's this balance between wanting to keep your kids safe, and also wanting them to just be a kid. So I think that a lot of the time, it's about you as a parent wanting to protect them by not burdening them. And just by taking away you know, all of the jobs that they're doing with their diabetes or their task or making it simple with like carb counting for them, we're only putting quote unquote, healthy food or low glycemic foods on their plate. But that might not actually be what's going to help them for the long run. So really, I think for any parent listening, this, to me is one of the hardest jobs, you guys are all heroes, I can't imagine I look at my mom now and my dad, and I'm like, Thank you, like, I had no idea what you were really going through. And that that job that you that extra job you had when I was diagnosed, and you're doing great. And I think that you can do quote unquote, all the perfect parenting in the world and your child, there's going to still have, they're still going to have challenges later on. So the goal is really to set them up with to be independent, to care about how they feel, to care about their numbers, but also to not be limited by their diabetes and and to find that balance.

Stacey Simms 31:32
I'm just curious. Did you ever go back to your endocrinologist who was like, Yes, this is amazing, like the high fiving. Doctor like does that doctor know about it this way?

Lauren Bongiorno 31:43
So the funniest thing about it is I adored that doctor, I love her. She we follow each other on Facebook. Sometimes when I do local, I speak at local JDRF event. She's there love her. And I think that she's probably seen me talk about it a little bit on social media for sure. We've never like address it specifically. But I don't it's not about her. That wasn't her fault. She was celebrating me like I think a parent would celebrate a child to achieve who had an agency like that. And I think the bigger issue is really the lack of emphasis on mindset. And on mental the mental and emotional impact diabetes has on children and teenagers and adults for that matter with diabetes.

Stacey Simms 32:27
Hey, I'm just curious. And I always ask guests this, you don't have to answer. What kind of tech do you wear? What are your diabetes devices if you don't mind sharing?

Lauren Bongiorno 32:34
Yeah, so I wear an omni pod and the Dexcom G six, I was on charts for my first two years living with diabetes. And then I went to a Medtronic wired pump for about, I would say, 14 years. And then the last six years, I'm not sure if this math, somebody can add this math, drag, but it should all equals 21, less five or six years I've been on an omni pod. And I just love, love love that it doesn't have a wire. And that's that works for me personally,

Stacey Simms 33:02
before I let you go. It talked to me a little bit about your partnership with a couple of nonprofits. You know, I know that you would rightly want to make more of a difference than just with coaching. So who are you working with? What are these about?

Lauren Bongiorno 33:16
Yes, so we are here to help create the short term change for individuals impacted by type 1 diabetes and families and the long term change with diabetes care. So our approach is community based it's collaboration, it's how can we all take our the best of our missions and lift each other up. And so ways in which we collaborate with the community. Number one, we have Kyler Keres, which is a nonprofit organization that provides grants for continuous glucose monitors and insulin pumps for children and young adults living with type one diabetes. And Kyle banks is the founder, he actually played Mufasa on Broadway in The Lion King. And he is an incredible human being we actually found out recently when we were together that we have the same diabetes anniversary November 1, so that was fireworks were going off. Because we already love each other so much, but we're thrilled to partner with them. Because we just have, I think, because I was diagnosed as a kid and so many people on our team are also diagnosis kids, we have a special space place in our heart for young adults and children who don't have access to those things. And there's a direct correlation between your household income and your agency and your diabetes control. And so we really want to be able to give back in that way and to help support those people. And then secondary to that we have our together to one D Impact Fund which partnerships that we you know, work with in the community. They're able to donate to that fun to help give coaching scholarships to people who face significant barriers to health care to our coaching programs. And all the people who come through our programs through the scholarship They're carefully selected and you know, have an in depth review process, but it really allows us to be able to impact the community on that intimate level.

Stacey Simms 35:05
It's so interesting to hear, like how much I noticed didn't happen overnight, but like how much you are doing, when you look back at that 19 year old with that amazing a one C, but that not so amazing life? What do you think you've come so far?

Lauren Bongiorno 35:21
You know, in a way, I feel like I had so many years of struggling with my diabetes, that it was a blessing in a way it was such a blessing because it brought me here and we've impacted so many people's lives with diabetes. And you know, women who weren't able to have babies, they've had miscarriages after miscarriage because you know, maybe it's related to diabetes. And then finally bring a healthy baby baby into this role because their agency is down or to the parent who their child is diagnosed. And they feel like there is no possible way and they don't understand how they can, you know, go to a soccer game and not completely tanked their blood sugar's and then they're able to and they feel that their child has that sense of freedom back and confidence that all these little things, it's really, it's why we do what we do. We are there's so much passion behind what we do so much intention, so much integrity, and so much, so much hope that what we're doing can continue to be a ripple effect and impact people on an even larger level than we're doing now. And that's what keeps us going every single day. So I think 19 year old me or even seven year old niece who is standing in front of my gym class, my mom recently found a video I was sending for my gym class after getting diagnosed, doing a fundraiser at my school with my little pigtails and limited t shirt on it was so cute. And that girl was I feel like meant to do this all along. And it doesn't mean that there's not challenges, it doesn't mean that there's not Robox but it means that that those things are just there to push me to keep going and push me to realize how worth it this is.

Stacey Simms 37:00
That's great. Oh my gosh. I love that. Lauren, thank you so much for joining me.

Lauren Bongiorno 37:04
Thank you so much for having me, Stacy.

Stacey Simms 37:11
You're listening to Diabetes Connections with Stacey Simms.
More information about Lauren and coaching and Risely and you can read her story. And she's been on some national media, she's got great videos, all of that is linked up at diabetes connections.com. As we do every week, every episode has its own page.
If you head on over there and click on episodes, you will find them all. There's also a very robust search. And I say that because we are up to this is episode 455. So if there's a topic that you're interested in, we have likely covered it. Obviously, we haven't covered everything. And please send me your suggestions. But if you just type it into the search box, it really is. I'm really thrilled with my web folks, I'm stuttering around because I had nothing to do with it. But I asked them to make me a great search. And they did. And you could also search by topic by date, whatever suits your needs. So please check that out.
We have some great shows coming up. Boy, there's so much going on these days every Wednesday I do in the News Live and that's on social media. And then I turn that into a podcast episode. That's every Friday five or six minutes of just headlines and in the news stuff for the diabetes community. Next week, you should be hearing from ever since I'm working on that episode right now we're going to talk about their longer where and you know, a lot of you already have commented in the Facebook group about you know, worries about this device. And who was it for? I gotta tell you, Benny is super eager for this because of wrestling and his sports. Think about a CGM that you can't knock off, right. So I'm not here to endorse them. But I am here to say let's talk to them and find out more about this option. We're also going to talk about Tandem and waiting because while they just got FDA approval, they have an earnings call later this month that I want to wait until after that because some interesting things may come out. So we'll be speaking to them. And that episode will probably air in early March.
But in between those two, I have an interview with the folks at Pixar and I have a great story about why there is diabetes technology featured in turning red. This is the newest Pixar movie debuting on Disney plus in March. And so look for that episode, probably right before the movie comes out. We've taped it, I have to hold it sometimes these things are embargoed, and this was one of those cases. So really excited to bring that to you. All right, thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here soon Until then be kind to yourself.

Benny 39:43
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

Feb 18, 2022

It's "In the News..." Got a few minutes? Get caught up!

Top stories this week include two big FDA approvals! Tandem's Mobile Bolus and Eversense 180 day sensor both get the okay, we're looking at earlier detection of T1D in kids, there's a new discovery around a protein that might help T2D, info about Spare a Rose and Omnipod drops a hint about a crossover with a popular Nintendo game.

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

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

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

OMNIPOD

DEXCOM

FB LIVE:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. If you’re new we go live on social media first and then All sources linked up at diabetes dash connections dot com when this airs as a podcast.
XX
Looking to get organized? Diabetes supplies can really add up and all that pump and CGM stuff or even shots and wipes and strips can clutter everything up. I’ve got a great new guide to help you out. It’ll get you started and keep you organized. That’s totally free and it’s over on the podcast homepage.
XX
Our top story this week – big movement from the US FDA, two approvals we’ve been waiting for. The first, Tandem Mobile bolus – what I’ve been calling bolus by phone. As expected, company says when released, this will be no additional cost for in-warranty customers through a remote software update. Limited launch in the spring, followed by expanded launch this summer. It’s compatible with both iOS and Android, although limited to just a couple of models right now. This is a very important step not just for customer convenicen but as Tandem moves forward with it’s new hardware line including Mobi will need an external device for full control.
https://www.tandemdiabetes.com/landing-pages/remote-bolus
XX
The second FDA approval came through for The Eversense E3 continuous glucose monitor. This 180-day implantable sensor will be available later in 2022. If you’re not familiar, you have the sensor, inserted under the skin of the upper arm (and removed) every six months by a trained healthcare provider. There is a rechargeable transmitter which vibrates on the body for highs and lows.. and a mobile app. The sensor requires two calibrations per day for the first 21 days of wear. After that it requires one calibration. Lots of questions here and I’m talking to these folks for an upcoming episode.. look for that in about two weeks.
https://diatribe.org/180-day-implantable-cgm-eversense-e3-approved-fda
XX
Saw an interesting post from Omnipod this week on IG.. All about Pat Podder® - the caption says she “is a long-time member of the Pod Squad who loves a good DIY project, going swimming, and to explore new places.” Take a look at this animation, along with the hashtag they used.. Animal Crossing.. are we about to see a gaming crossover? Insulet says an announcement is coming Thursday of this week, so if you’re listening to the podcast it may have already happened.. I’ll follow up.
https://www.instagram.com/p/CaA_5rEsyMH/
XX
Big push in Germany to get doctors to screen very young kids for type 1. This group conducted the world’s largest population based screening for type 1 diabetes in children so far. Since 2015, any child aged 2–5 years in Bavaria, Germany, could have their blood tested for islet autoantibodies. These show early stage type 1 diabetes years before high blood sugars and other symptoms. More than 90-thousand kids have been tested and point 31 percent (.31%) have been diagnosed. Next up is to take a deep dive into the potential cost savings and increased quality of life compared to what happens without these early screenings.
https://medicalxpress.com/news/2022-02-early-diabetes-children.html
XX
It’s a mouse study.. but good potential here for a drug to treat type 2 diabetes. It works by amplifying a protein that has a positive effect on insulin. The protein is called Swell-1 and it’s vital for normal insulin secretion from pancreatic cells. And, SWELL-1 activity seems to be significantly disrupted in people with type 2. Fixing that seems to restore both insulin sensitivity and insulin secretion. And it does this without lowering blood glucose when that’s not needed. Long way to go but promising..
https://newatlas.com/medical/new-drug-target-diabetes-metabolic-disease-swell1/
XX
The Spare a Rose campaign was back – focusing on Valentine's Day but continuing through February. The idea here is that instead of buying a dozen roses.. you buy 11 and donate the value of that last flower to help someone with diabetes. Since starting in 2013 Spare a Rose has raised almost 400-thousand dollars.. most of that has gone to Life for A Child. Now, these donations are going to the Insulin For Life Global organization. It provides insulin, supplies, education, and advocacy to children and adults. With that the name has changed from Spare a Rose, save a child to Spare a Rose save a life.
https://sparearose.org/
XX
More type 1 at the Olympics! Last week we told you about Snow Boarder Kamilla Kozuback who was diagnosed at age 13. Czech skeleton athlete Anna Fernstädtová came in 7th a couple of days ago. A MONTH ago she was in the hospital, newly diagnosed with diabetes. She wrote on Instagram: “7th place at the Olympic Games. Not the runs I wanted, not the result I wanted. But these are happy tears. Not even a month ago I was in hospital, without knowing what would happen. But we made it happen. Thank you everyone who got me here And to everyone who is also dealing with type 1 diabetes: everything is possible! You got this!!”
https://www.facebook.com/annafernstaedt
--
Our long format episode this week is with the folks at Sigi pump.. a new tubeless rechargeable pump that got breakthrough device designation last fall.
Listen wherever you get your podcasts
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

 

Feb 15, 2022

Last fall, Sigi pump received Breakthrough Device Designation from the US FDA. Although it's still a long way from being released, Sigi is very intriguing; it uses some of the best parts of existing pump systems.

Pim Von Wesel is Co-CEO of AMF Medical, the company that makes the Sigi Pump. We’ll talk about what makes this system unique, which partners they're eying for collaboration and the timeline for submitting to the FDA really looks like.

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!
-----

Episode Transcription Below (or coming soon!)

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

DEXCOM

Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921, where Diabetes Connections are made.
This is Diabetes Connections with Stacey Simms.
This week, it's called Sigi pump. And last fall it received breakthrough device designation from the US FDA, there's still a long way to go before this tubeless rechargeable pump could be on the market. And company leaders say that's okay by them.

Pim van Wesel 0:37
We're biding our time to make it short is excellent in every respect, technically, from a usability point of view, of course, which has a huge focus to us lowering therapy burden, and also just being able to produce it in sufficient quantities.

Stacey Simms 0:51
Pim van Wesel is Co-CEO of AMF Medical, the company that makes the Sigi pump, we'll talk about what makes this system unique, which partners they're eyeing for collaboration, and what the timeline for submitting to the FDA really looks like,
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show, always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. Before we jump in, I want to give a big shout out to the amazing people in our Facebook group. If you're not there, it's Diabetes Connections, the group and I just want to single them out, because I think that it is the smartest diabetes Facebook group that's out there. I know I'm a little biased. But you know, it's not the kind of group that's going to tell you how to eat or how to dose or you must do this, or how dare you do that. As you know, if you listen to the show, that's not our deal at all. And I just want to take a moment because I've been asking the folks in there many of whom have lived with diabetes for 50, 60 years, many of whom work for technology companies, many of whom have been blogging about diabetes for many, many years. And I've been bringing them questions that have come up in my local group, things like cannula length, making a difference, some questions I had about summer camps for this year. And they all also have fabulous conversations. So I know we're all if you're on Facebook, you're in a ton of groups already. I do think that it's a really good one. If you'd like to hear from people who have lived with this condition for a long time who are very knowledgeable and frankly, very opinionated, which I like a lot. I do run a very tight ship. I do this in my local group as well as this one, you're not going to get away with any nonsense. Any weird stuff, a snake oil. Yeah, we will have none of them. But it's a great group. And I just was given them a shout out because they've been very, very helpful, especially lately.
Okay. Sigi pump caught my attention when it received that breakthrough designation that I mentioned. And to be clear, that means the FDA will try to speed it through the process. It does not mean it's approved for that it's guaranteed approval. And Sigi by the way is S-i-g-i. I did share some photos of it in the Facebook group. And my guest is Pim van Wesel , the CO CEO of AMF medical, that is the Swiss company behind Sigi pump. They are very early on here. Clinical trials have not yet started, but they do plan that when they get through the process to launch in the US first while it looks a bit like an omnipod, but the pod part is reusable. You recharge it as needed, and they give you two so you don't have to stop pumping while you're recharging. One of them. The only disposable part is the infusion set, although they call it something else, the part that connects to the body. Lots more information about Sigi in my interview with Pim van Wesel

Pim thanks for joining me. I am excited to find out more about this product in this company. Thanks for coming on the show.

Pim van Wesel 3:54
Thanks for having me. Stacey. Very excited to share what we have.

Stacey Simms 3:57
Yeah, I have so many questions for you. But let me just start by asking, just tell you a little bit about the company that makes Sigi what is A M F medical? What do you all do?

Pim van Wesel 4:08
Well, AMF medical was really spun out as a standalone company in 2021. But the history of the company goes back to 2014 when the founders hit upon a technology which they initially started using in some high end components for laboratory equipment. But a number of the founders had a history from a previous startup in insulin delivery. It didn't work so well then. But when they analyze this particular technology, they said, Wait a minute, we can probably make a insulin pump with this technology that would work that would not destroy insulin and being a large, fragile hormone. And they started a project in 2015. Over time, the project got big enough that they decided what we decided I joined since then to make it a separate company just because the investment story is very big. Different for insulin technology versus, you know, high end led components. So, company started in 2014, on off separately in 2021. Around the time we kind of came out of stealth. And, you know, I joined a little over a year ago, basically to help build a business after the founders started with a technology hired a great r&d leader pair who turn it into a product and then meet to help make it a business.

Stacey Simms 5:27
Or you mentioned coming out of stealth mode. The first time I heard about this was when the US FDA gave what they call breakthrough device designation. What does that mean? And why is that important?

Pim van Wesel 5:40
Well, it's important to us because we feel we have a few capabilities, particularly around usability and lowering the therapy burden that we wanted to test with the FDA, if it deserves to some recognition. Practically, it means that that puts us a little bit earlier and faster into the approval process. But we have an ongoing conversation with the FDA that started with a pre submission conversation there. And we decided to that we would try for this designation to get some recognition for some of the capabilities that we have, they picked up on a number of them, which got everybody very excited. You know, in a way, it's, you know, recognition that we're addressing unmet patient's needs.

Stacey Simms 6:18
Okay, so I got a little bit ahead of myself there by starting by asking about the FDA, let's just back up and talk about what the product is. Tell me about the Sigi pump. What makes this different,

Pim van Wesel 6:28
it is a patch pump, we have designed it for interoperability with multiple systems, so multiple third party glucose monitors and multiple algorithms. And I think one of the novelties that we'd like to bring is just tremendous ease of use. So we use standard prefilled insulin cartridges, I think that's in a nutshell, the product, it is a semi reusable product, the pump itself is reusable, you would have to as a user, with a dedicated charger, and whenever you need to switch it out. Because your cartridge is empty, you take your second pump, pump, pump into cartridge, use a new sterile cap to close it and then put it back onto your pad. The pad is a or tray, but we call it a pad is basically placed on your skin. And you can clip your palm on and off as needed.

Stacey Simms 7:17
I'm going to describe this probably pretty poorly. But in my mind's eye using existing technology, this seems to me like you use sort of a pump infusion set. So you would insert the tray the base as you called it onto the skin. And then that's temporary, right, you would take that off every couple of days like you do right now. But the patch pump is more like a more durable pump like a Medtronic or a Tandem, but you physically clip it flat, it connects to that infusion, well, I'm calling an infusion set. And is that close to accurate?

Pim van Wesel 7:52
That is I think that is a very good description with the one caveat that we have the ambition for the pads to last a little bit longer than a couple of days. Which basically means that once the pad is on the skin, let's just say for a moment that it lasts a week, as you run out of insulin you your take your pump off, you put in a new cartridge, and you clip your pump back on as long as the pad lasts, or what you could imagine somebody who has a very high use in need of insulin, they might for instance less in people that are in type two, not that that's our primary focus. But if they were to go through 160 units in less than two days, they wouldn't have to change the insertion of the pad or to disposable if you will. So that's the idea. Absolutely.

Stacey Simms 8:38
Got it. We're going to talk about more features, and you know a lot more about what the system is about. But before we go any further is what we're talking about in existence yet. In other words, is somebody wearing this? Is this in clinical trials? Where are you in the process?

Pim van Wesel 8:53
So we have functioning prototypes? We have not, and we've tested the usability of those we published something at ATDD last year. And we'll we'll have some more information at ATDD coming up in March sort of product exists. But formally speaking, we have not done the first human yet and as planned for later this year towards the end of 2022.

Stacey Simms 9:16
Got it? Well, the next question I know my listeners are going to have is can they take part in that are those are those first people in Europe or in the United States?

Pim van Wesel 9:24
There? I'll be very honest W in Europe. And that is primarily just to you know, we're startups. So we're trying to keep it manageable and coordination effort. So to do this in the US is probably a little bit beyond what we can can do at the moment. But clearly, I mean, just to answer the following question. Our intent is to first go in marketing United States and that's why we have these conversations with the FDA.

Stacey Simms 9:48
Got it. Got it. Well, we have lots of listeners in Europe too. So we'll put all the information out is as you're able to send to us. Alright, so let's talk a little bit more about the product itself, or the system itself, I should say the public Um, you mentioned you know, refilling insulin, this is prefilled pump cartridges as designed, right? This is not, you don't have to draw it out and fill it correct.

Pim van Wesel 10:09
There's no, if the term here fiddling to fill it, you basically take it out of the, you know, insulin caps in the refrigerator, and you pop it in straightaway you you don't have to wait 20 minutes for it to warm up, the system is compensating for that. So there's no air bubbles. And these cartridges, they already exist, they're already on the market. They're just being used today, with, you know, the Tethered pumps, or, you know, the pumps you were in a belt or in a pocket. So, you you mentioned the Medtronic pumps. Actually, there's other products out there that use this exact same existing cartridge. And I think you've spoken about some of these pumps in other podcasts.

Stacey Simms 10:46
Yeah, it's interesting. You know, we're so US centric sometimes that I certainly tend to forget, I believe what, Ypsomed uses the cartridges?

Pim van Wesel 10:54
Yes, Ypsomed uses that cartridge here in Europe And they have their agreement with Lily in United States. And there's a Roche product as well that uses this. But to our knowledge, this is the only patch pump that's designed around this cartridge. And it's actually a big part of why the pump has the size that it has, we couldn't make it much smaller and, and still fit the cartridge in

Stacey Simms 11:16
tiny a little bit more about the pump design itself. As I'm reading through, it looks like it is controlled from a phone or controlled by a separate controller. Are there any buttons on the pump itself,

Pim van Wesel 11:27
there are no buttons on the pump itself. And it is operated via your own smartphone. That's definitely the ID that we're working towards. We don't think people need another personal device manager in their pocket. So keep it simple.

Stacey Simms 11:40
And now I've talked about system a few times. Let's talk about that. So Bluetooth unable to go to a smartphone to go to an AI Controller talk about that a little bit.

Pim van Wesel 11:49
It is in no technical parlance. It's it's designed in the discussions with FDA RS ultimate controller enabled pumps. So nice pump, and it has everything that you could, you know design to so we're not trying to backwards integrate an algorithm and interoperability with third party CGM is designed to be able to do that. And when we say designed to be able to do that it has the communication capabilities with Bluetooth, it has the processing power to have an algorithm on board, and it has the battery life to deal with it as well. It's a rechargeable battery, of course, all of that is designed to be able to communicate and to calculate in, you know, work with dosing algorithms, if you will, that would be onboard. There's some systems that have the dosing algorithm on a personal device manager or in the future on the phone. We can accommodate that as well. We think that there's some advantages to having the algorithm actually embedded on the pump. And we've designed it to be able to do that.

Stacey Simms 12:46
I may have missed this point. You're not creating an algorithm for the pump?

Pim van Wesel 12:52
No, I think when we initially I think the ambitions were for the company were quite large. But if we really look at the core competencies, the core capabilities that his team has is around fluidics management and is around miniaturization. So over time, we also realized that, you know, we should better stick to what we do well, and is just make an excellent pump a truly excellent pump. Otherwise, we don't think we have any right to be on the market. And we have this open ID, you know, collaborating with, as far as we're concerned with any algorithm that's approved with any CGM, that is that is available. So we really have an open protocol or an open system mindset there. I think that's a little bit. You know, if we read the documentation, what the what the FDA is doing with the creation of these new product categories, such as ace pump, an IC, GM and I control, or we read a little bit with the JDRF has as a position statement around your artificial pancreas. We're fully subscribed to that philosophy, because we're open. Yeah,

Stacey Simms 13:59
it's really interesting, because ideally, and we've been talking with this for a couple of years now ideally, right, you'd get your pump, you get your CGM, you'd be able to pick and choose and then say, Okay, I want this algorithm I you know, I want my, I mean, I'll put the blue sky thing I want to Sigi I want my libre, and I want to use the control IQ. Correct? Is that something you think is a real possibility here?

Right back to Pim in just a moment, but first Diabetes Connections is brought to you by Dexcom. And we've been using the Dexcom system since Benny was nine years old. We started with them back in December of 2013. The system just keeps getting better. The Dexcom G6 is FDA permitted for no finger sticks for calibration and diabetes treatment decisions you can share with up to 10 people from your smart device. The G6 has 10 Day sensor wear and the applicator is so easy. I have not done one insertion since we got it. Benny does them all himself. He's a busy kid, and no way he can just take a quick glance at his blood glucose numbers to make better treatment decisions. is reassuring. Of course, we still love the alerts and alarms and that we can set them how we want it for glucose alerts and readings and the G six do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to diabetes connections.com and click on the Dexcom logo.
Now back to Pim talking about interoperability and whether the system will work with other algorithms and devices.

Pim van Wesel 15:27
Well, we're definitely building our product for that to work, and depends a lot, of course, on the collaboration that that you can put in place with some of his companies. And being a startup, you know, a number of these collaborations are actually, you know, very enthusiastic, and other ones are a little bit more and wait and see, because we're still startup at this point in time. And I understand some of the bigger CGM companies, they might say like, well, let's wait and see if these guys actually gonna make it to market before we spend an awful lot of time co developing with them. But a number of areas septic, and we have good conversation. So will it work with all depends? You know, I don't think it's so much a technical question as a question of, you know, is there the will to make it happen. But we're very encouraged by some of the collaborations that that have been put in place, still early days, but we plan to do our first human and fairly soon thereafter have a what we call a hybrid loop trial with with a select number of patients.

Stacey Simms 16:26
Not to belabor the point here, it would be too early to ask you which CGM you would work with because you're, you're still

Pim van Wesel 16:33
Well, let me turned the question around. Which CGM? Would you first like to see on our pump?

Stacey Simms 16:39
I would. But I first like to say, good question here in the US, right, we only have a Dexcom and Libre, and Medtronic, I'd left them out of that, because they're so proprietary, you know, they only work within their system. So you know, if you ask me, I'm going to say Dexcom? Because that's what we use. But I would also say, I mean, I'll speak out of both sides of my mouth, everybody.

Unknown Speaker 17:03
So

Stacey Simms 17:07
in the works, probably two of which will come to market?

Pim van Wesel 17:09
Well, yeah, it's interesting that you mentioned that, Stacy, because the other day, with, you know, we basically had an inventory of the number of CGM projects out there. And I think it was getting to about close to 40. If you kind of all add them up, and we don't have 40 agreements in place, we have some agreements in place, and when I can talk about it, because there's confidentiality there, but you probably won't be disappointed with some of the names that we're talking about. But to your earlier point, you know, there's different form factors, right. Some people are very comfortable with having, you know, every six months or every 12 months, a minor intervention, not to have, you know, not as a wearable other people are actually, you know, preferring a wearable. And I think we want to accommodate that, as you said, different form factors, different dosing algorithms. So that that's our philosophy. And we're sticking to that for an hour and see how much of that we can make happen. But clearly, when we make our selection the same way these big companies do it, right. They say, I'm not going to work with this startup, well, how much do I believe they actually going to exist five years from now? Those same considerations apply to us as well? Yes, we have some conversation with early startups. But if you want to be successful, we'll probably have to partner with one or two of the bigger ones first, just being very pragmatic. And that's what we're doing.

Stacey Simms 18:28
And I left out one apologies to ever since the folks at Sensionics , who I'm sure you're very well familiar with, but I did not mention them as the US CGM company are available here. And they certainly are. I'm always gonna say work with everybody. It's so interesting to think about how it's changed in the last Gosh, even the last five

Pim van Wesel 18:45
years now. Right. But that's despite debts. It's going so fast. We think there's really just only only one really successful patch pump on the market. And we think we have something to offer in that space where we're at. And we're focused on that.

Stacey Simms 19:00
Is it waterproof? Yep. The fast answer. That's easy.

Pim van Wesel 19:05
No, I think, do the way we think about hedge pumps and look, and I've worked at some of the larger companies that have projects or had projects or have projects in the works on it. There have been so many attempts, I think, and there have been so many bridges burned in that space that are we get a lot of pressure from investors and from, you know, people that pick up with us on the websites to go fast and our philosophy and less our product is excellent. We don't have the right to be on the market. And we're biding our time to make sure it's excellent in every respect, technically, from a usability point of view, of course, which has a huge focus to us lowering therapy burden, and also just being able to produce it in sufficient quantities. It's a high hurdle. We don't want to come out unless we're absolutely excellent. And I'll tell you the story what what I discussed with our r&d people. I said look, we'll go to market when we are confident that we can Then pick a handful of influencers in diabetes technology world, and we'll give them flutter for three months. And we say, do what you want, write whatever you want. If we're totally comfortable doing that, then we're ready to go to market.

Stacey Simms 20:13
I had a question from a couple of listeners. And you've answered this a little bit about the differences between Sigi and the Omni pod, which is, you know, pretty much the closest to something like that, that we already have right here. And you've mentioned things that it's, you know, it's smaller, it's lighter, it is rechargeable, so you're not throwing the pump itself away. Are there other differences you'd like to point out?

Pim van Wesel 20:34
Well, I think the other one you pointed out as well, and that we we put a lot of effort in is the fact that it uses a prefilled cartridge, then this is designed upfront for interoperability, and we'll think we'll be very open. But I think you hit on most of them. Plus, of course, the fact that we use this prefilled cartridge, which we think is also looking at, you know, the feedback that we're getting on the website. There's there's an encouraging number of Omnipod users who've picked up on our website and are sending us comments. So we'll keep working at it. From that perspective.

Stacey Simms 21:05
I'm curious, we I've been talking a lot in the last couple of weeks on the show about infusion sets. You know, we had the folks from convatec on talking about the different types that they're looking to make you already mentioned, hopefully longer. Where can you talk a little bit about that part of this system, I know you can't, you know, there's a lot of proprietary and I'm sure information you can't share. But just in terms of he would seems to be that it would be a different type of insertion, just because it to me and it could be wrong, it seems like it might be have to be bigger, I'll let you talk about it.

Pim van Wesel 21:33
Let's talk about the insertion is designed to be very fast and fast in this respect often means, you know, limited, limited pain, right? If you do it very quickly. That's number one, or insertion is intended to be very quiet, particularly with very young patients in mind, this should not be a scary experience. So that's the insertion the cannula itself, we have a number of ideas around it to make it 470. Where and of course, because the pump, and isn't just the the setup itself, but the pump itself is very, very lightweight, we aim to make it you know, very wearable from that perspective, as well. We are doing a number of tests around you, we've done some testing or the wearability, and we've made some changes to the adhesive. And that's, you know, continues to be a big focus, just trying to work with the best adhesive companies out there. And in terms of the cannula, we are doing some tests around making sure that that you know, we don't have clogging and that we actually can get to seven days without, you know, too much inconvenience. Putting for sale is a pretty high hurdle there for seven day use and need to see if we can get there that's still already work. But I do wonder what are the thing I will say compared to some other pumps is we have no tubing at all right? So the the fluid path, if you will, from the cartridge to the skin of the user is actually very, very short. And that of course has the advantage as well, which other patch pumps have as well, not all of them, but some for sure is that it has very little incident wastage involved, of course, we really aim to completely empty the cartridge.

Stacey Simms 23:12
Are you making the infusion set or the connector? Are you all making that yourselves?

Pim van Wesel 23:17
Yeah, we make everything ourselves except the insulin cartridges which are available, but we are doing everything ourselves. We have from our micro fluidics technology background, we have a lot of information on what works. And we've done extensive insulin compatibility testing with insulins that we believe will be available in this cartridge just so we have the data, which is very encouraging that, you know, it lasts and that doesn't create any you know, material interaction issues. For instance,

Stacey Simms 23:45
I mentioned at the beginning of our chat here that you are relatively new to the company. And you also talked about you're already getting input, I'm sure criticism, comments from the diabetes community from the website. What were you doing before this? And what has it been like to move into the diabetes space where well are very, very passionate?

Pim van Wesel 24:06
Absolutely. It's, I've been with the company formally for about a year, I've, you know, been helping the management team, the executive team and the board a little bit before that. I have a longer experience in diabetes. I worked for about five years in diabetes with Medtronic and Europe. So this is not my my first rodeo. It is a very engaged community and very passionate and very vocal. I've also worked in incontinence and I can tell you that the people who have incontinence problems are a lot less vocal than people living with diabetes for sure. And people stay around right. It's been very encouraging to to reconnect with some of the experts, the clinical experts I had the privilege of working with in the past and they're still around and you're still advising and they're still happy to have a discussion and give very solid input. So quite a bit of experience with diabetes been in medical technology for since 2003. if you will, so coming up to almost 20 years, but I must say that working in diabetes is in the diabetes technology field is particularly gratifying you, you're actually much closer to what's happening than in many other areas of medical technology. So it's been good. It's been good to be back. Absolutely.

Stacey Simms 25:17
That's great. Yeah. And then the past few years, as well, there's been this push from the pump is, you know, this clunky medical device to realizing that people, you know, it's such a part of the day to day life of someone with diabetes, and our phones look great, Why can't our pumps look great. And I'm assuming that that is part of the design here to this is kind of silly to ask, but I did get this question. And I like silly. Is there any planning here to make it different colors to have any designs on it, things like that,

Pim van Wesel 25:48
let me Well, a couple of things. Colors is not the high priority, we have a project extension matrix and colors is actually on there. We think it's a fairly low efforts, we're just questioning in terms of user benefits, if there's not other things we need to focus on first.

Stacey Simms 26:06
And also getting it to market probably is the top priority,

Pim van Wesel 26:08
for sure. But you know, when you talk to two people in the diabetes investment community, they want to see some ideas of what else you can think about for the future. And we have a number of ideas in this. But particularly for young, young users and pediatric patients, for instance, we know these things are important to my, in my former life, I've spent a lot of time coming up with cool stickers that worked on a pump, if you will. But we were already worked very hard on the design. If I show you one day, the first prototypes, they looked very different and quite a bit bigger. And we're very fortunate to work with an excellent design company around some of these four factors, things, I didn't fully appreciate that necessarily when I started. But for instance, the applicator has gone through numerous separations, iterations to allow for single hand application at all different body parts so that the angle still works. And one of our investors, you know, said, Oh, I get it. And I'm not sure if this analogy resonates in the United States. I think it does. But one of the investors said, Wait a minute, you're like the Nespresso, of insulin therapy. And I don't know, if you, you know, if you made an espresso in the old fashioned way, you had to get the amount of coffee, right, you had to get the pressure, right, you had to get the temperature, right. It's quite involved, right, and espresso comes around, and kind of makes it, you know, standard and repeatable and very, very easy to use, come and take a little bit further, it's so happens that the design company that we've worked with, on route a form factor, not that technology run the form factor, actually happens to be the same company that designs the Nespresso machines. They liked our project very much. And I wouldn't say they're doing it for free, but I think we're getting a better rate. And then this person is,

Stacey Simms 27:55
you know, a friend of mine makes a t shirt that says I run on coffee and insulin will have to send them one of

Pim van Wesel 28:00
those. Absolutely. And I'll share it with my espresso friends as well.

Stacey Simms 28:05
Hey, I meant to ask you earlier, and this is a question I got from a listener, you have mentioned, you know, we've talked several times about the prefilled insulin cartridges, do you anticipate a certain type of insulin? Will it work with most of the types that are out right now,

Pim van Wesel 28:19
we have tested it for insulin compatibility with for insulins today, we've tested it with Nova rapid, we've tested with fierce, we've tested with Lumia F, and we've tested with Humalog. And we think that we that we cover a very significant portion of the US market, because there are some, you know, various there is a sell Fill option as well for this product, although that's probably not the benefit that we you know, we we kind of put forward that much but we're very interested in working with with multiple intell insolence, particularly if they could be available in in prefilled insulin cartridges. And we have some ideas are as well, particularly for for type two, to work with higher concentrated insolence. And we have some discussions around well, could the pump identify which type of insulin you're actually putting in your pump? You don't want to confuse you 200 or higher. Right? Right, you 100 Of course, the further discussion around that. And this may be a little bit too far ahead. And you know is well wait a minute, you have different types of insulins, our future algorithms going to take different types of insulin rapid, ultra rapid and to take take into account in their calculations. And how could we ccommodate that the some of the discussions we're having with insulin manufacturers around Okay, would you pump be able to tell which insulin type you have actually just loaded your pump with snakes. Interesting.

Stacey Simms 29:50
Yeah. Yeah. It's very interesting to think about that. My goodness. I was just thinking like, could you use Humalog, Novolog? The four you mentioned, I guess Apidra would be the only one I would have a question about but it just doesn't sound like you've tested it.

Pim van Wesel 30:00
You know, we've not tested it yet. And there's no other reason than that. We know that the insolence I just mentioned, they might be available in the cartridge form factor, or Nofal. Rapids. And, and fill us with, that's public information that they're available in pump cart. And we've all learned about the lily project with Ypsomed, and we kind of figure that they will use a similar cartridge, we don't think that it's going to be very different form factor wise. So that's why we focused on those four,

Stacey Simms 30:33
we've already started looking probably further ahead than we should with something like this. But you mentioned the next time there may be more information will be in in March, and then more trials on people starting later this year. Do I have that correct. Anything else that you want to add that's happening in the near future?

Pim van Wesel 30:50
Will will hopefully well, one feature that we haven't discussed and which we are exploring very actively, and we announced this last HDD is that we have very fast Ultra very fast occlusion detection. And we have now independent data, which will hopefully see published at attd, about comparison to comparative data, how fast our occlusion detection is, and we're exploring what are some of the benefits of that, of course, we tried to balance it against alarm fatigue, of course, we don't want everything to become, you know, an alarm and basically drives people crazy. But we think there's some real benefits to having very faster collision detection, particularly if you go to very young patients. And I think we're seeing more and more people with diabetes getting diagnosed earlier and earlier. And here in Europe, at least, they almost instantaneously go on a pump. And then we think we want to accommodate that. So that's going to be some clinical work we need to do, how do we how do we position the ability to, you know, very, very quickly, we're talking minutes, not hours, right? If you have a very low basal rate, you might not see an alarm in days. And we're actually minutes in that respect and that support very encouraging that we, we still need to think about. So maybe that's one feature we haven't talked about, and we're gonna do some clinical work around.

Stacey Simms 32:09
Interesting. Well, thank you so much for joining me. I look forward to learning more. I appreciate you starting the conversation. Tell your folks when they send those pumps for people to try. Certainly espresso machine. We all love espresso, they can handle that. Very good.

Pim van Wesel 32:23
I like the idea. Well, I wanted to thank you Stacey for the opportunity. And we're always available to answer questions.

Stacey Simms 32:29
Fabulous. We'll talk soon. Thank you so much.
You're listening to Diabetes Connections with Stacey Simms.
Lots more information about Sigi at diabetes connections.com. Every episode has its own homepage with a transcription and more information. If you go there, and the transcription isn't there. And it's an episode after January of 2020. It's coming. It just may take a couple of days to get it posted. But I promise it's there. And we are working our way backwards through the other episodes since we started the show in June of 2015.
I did want to add one thing I forgot to ask during the interview and I asked it later, why the heck is it named Sigi. I emailed them after the interview. And they told me that they came up with the name through an internal naming competition. The chairman of the co founder proposed it kind of a little tongue in cheek was tribute to one of his fellow co founders, an older gentleman, he is 84 years old now. And he was at the origin of what they call the system's core a microfluidic pumping technology idea. His name is Siegfried Strassler and Sigi is his nickname. They said everybody liked it. Also, because I love this it evokes a certain friendly, reliable swiftness. And so it was voted. So that's why it's called Sigi. I love names, I just love to find out why these things are called what they are. I mean, sometimes it's just a number like Omnipod. Five is the next one, Dash was number four and back from there, they're keeping it simple. I liked horizon. I like with control IQ. I hope that they keep names like that. So we don't have to just remember numbers, it makes it easier and it gives a little bit more personality. So thanks for the definition of Sigi and congratulation to Mr. Sigi Sigfrid strassler. Although I guess if it's his nickname, I would not call him Mr. Sigi. I'm calling him Mr. Sigi.
Anyway, we will keep you posted on how the Sigi system moves through the pipeline. And of course, I'm following closely on technology and hoping that we're getting more approvals and more movement for the US FDA for stuff that's already in front of them and that is in the pipeline.
What's coming up. I will say that if you are interested in sending your child to diabetes camp, jump on that most of the camps have opened registration, they usually do that in mid February or by mid February. So chances are if you've got a local camp near you or you want to send your kid to a camp that's not local. Go ahead, look that up. I actually thought I remember when Betty was diagnosed because campus such a big part of our lives as the kids got older, I was thinking, Okay, we're going to do like a diabetes camp tour. I'm going to send him for a week to the local one, I'm going to send three weeks to that one, because that goes for three weeks. I'll send him for two weeks to that, like, I was just gonna trick them around the country. But then of course, he said, No, he was going to go to the regular camp where his sister went, and that was the end of that. And I don't know if I've mentioned here before, I think I have, but he's gone for eight weeks this summer to be a CIT. I'm so excited about that. But eight weeks, man, no share, no follow up. I don't have WiFi at this camp. He'll be fine. We're going to talk about how he wants to do it. I mean, he's 17 years old at this point, so I'm really excited for him.
Okay, we have lots coming up. Please join me for in the news we do that live on social media on Wednesdays, and that it becomes an audio only podcast on Fridays. Thank you, as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here soon. Until then be kind to yourself.

Unknown Speaker 36:01
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

 

Feb 11, 2022

Every week “In the News…” brings you the top stories and headlines around the diabetes community. Top stories this week: A new treatment is being studied to help prevent hypos, cannabis use may decrease women's risk of type 2, examining Veterans Affairs claims for T1D & Agent Orange, better prevention for T2D and heart disease and which athlete at the Winter Olympics was diagnosed with type 1 as a teen?
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Episode Transcription Below (or coming soon!)

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DEXCOM

Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and these are the top diabetes stories and headlines of the past seven days. If you’re new we go live on social media first and then All sources linked up at diabetes dash connections dot com when this airs as a podcast.
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Looking to get organized? Check out my new guide with top tips to clear your diabetes clutter. Everything from how to start to where to donate and how to keep it from taking over your house. Head over to the home page to get organized.
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Our top story.. moving forward to find a daily therapy to slow or prevent low blood glucose in people with type 1. This is from diabetes-focused life sciences company Zucara Therapeutics. They’re calling the drug ZT-01 and in theory it could restore the body's ability to release glucagon. Long way to go here, but reducing hypoglycemia is obviously a great outcome due to the many risks lows can create. Zucara will now move ahead with it’s proof-of-concept clinical trial in people with T1D. The company expects to publish the findings from that study closer to this summer.
https://www.biospace.com/article/zucara-reveals-hopeful-preclinical-data-in-type-1-diabetes-/

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Part of the 2021 National Defense Authorization Act means a close look at type 1 in the VA. It mandates a report on disability compensation claims submitted by Vietnam War veterans who have Type 1 and were exposed to an herbicide agent during their service. The VA recognizes that Vietnam veterans' Type 2 diabetes can be related to Agent Orange. But it requires veterans with type 1 to provide evidence. There are some challenges here: The VA's claims decision data only goes back to 2003 and they track Type 1 and Type 2 with the same diagnostic code, they don’t distinguish between the two conditions. In 2020, diabetes represented roughly 6.5 percent of all service-related conditions for which Vietnam War era veterans received compensation.
gao.gov/products/gao-22-105143
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New study of gestational diabetes shows it recurs for nearly half of women who’ve had it before. These doctors say little is known about the risk factors for recurrent gestational diabetes. Part of the problem is that they just changed criteria for diagnosing it. In this study about 8-percent of women had a history of gestational diabetes. Of those, almost 50-percent had it recur and just over 7-percent developed type 1 or type 2 between those pregnancies.
https://www.healio.com/news/endocrinology/20220208/risk-factors-differ-for-first-time-recurrent-gestational-diabetes
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What’s the link between weed and a lower risk of type 2? First.. this study only showed such a link in women NOT in men and only in heavy users. In this study that means using cannabis at least four time in the previous month. No differences in the prevalence of type 2 in men who were light or heavy cannabis users versus nonusers. These findings come from a large 5 year study that ended in 2018 and in which people self-reported their use. These researchers say the gender difference was also seen in animal models. Expect more study on this one.
https://www.medscape.com/viewarticle/968186
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More good outcomes with SGLT2 inhibitors and GLP-1 receptor agonists. These drugs are a mouthful but new research links them with lower chances of potentially fatal heart problems in people with type 2 without established heart disease. They compared these newer meds to the risks in people using more traditional therapies, such as metformin. The researchers showed the odds of developing heart failure was 51 percent lower for people using SGLT2 inhibitors, 18 percent lower for GLP-1 users and 57 percent lower for people using both drugs. The newer drugs are prescribed less and these researchers say we need to look at why when the newer ones show better outcomes.
https://medicalxpress.com/news/2022-02-diabetes-drugs-thousands.html
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Some tough numbers about depression and diabetes. In the US.. about 30-percent of people with either type 1 or type 2 have depressive symptoms and 11-percent show signs of major depressive disorder. This lines up with studies from other countries as well, so it’s not just about healthcare. There’s some info in this study about how insulin resistance may go hand in hand with depression.. Women with diabetes seem to be at a heightened risk. Emerging research suggests treatment of depression with antidepressants may decrease the risk of developing diabetes-related complications, although other research suggests there may be complications related to their use.
These conflicting findings highlight the need for further research.
https://www.endocrinologyadvisor.com/home/topics/diabetes/diabetes-and-depression-and-distress-and-psychological-and-clinical-and-social-causes-insulin-and-glycemia-and-antidepressants/
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Our friends at DiabetesMine have a good write up about the very attractive and ever elusive state of non-invasive blood glucose monitoring.. One that caught my eye was Scanbo. This technology uses a 60-second noninvasive finger measurement instead of a traditional blood drop required to measure glucose. The company has developed a prototype. You just put your fingers on the flat white sensors and the system uses a set of algorithms to analyze and offer insight on glucose values. Like most of these we’ve reported on.. they present at consumer shows, not medical conferences and no clinical trials. And.. this is my editorial.. what a weird photo. It looks like you have to put both hands on the machine and with the chipped purple nail polish this looks like no thought was put into it.
https://www.healthline.com/diabetesmine/non-invasive-diabetes-technology
XX
At least one athlete in these Winter Olympics lives with type 1… Kamilla Kozuback was diagnosed at age 13.. and her first question was whether she’d ever be able to snowboard again. That was only four years ago! At the time she told JDRF Canada – quote, “I want to be in the next Olympics. I’m going to keep working hard, and training all I can” She’s competing in Beijing this week.
https://www.instagram.com/kamillakozuback/?hl=en
https://www.jdrf.ca/finding-strength-in-adversity-newly-diagnosed-teen-competes-in-2020-youth-olympics/
XX
The documentary “Pay or Die” gets some Hollywood star power behind hit. Susan Silverman signs on as an executive producer. We had directors Scott Ruderman and Rachel Dyer on the show last year to talk about what they describe as a look at the health care crisis in America, told through the personal stories of those with Type 1 diabetes who, because of soaring insulin costs, are living on the edge of survival.
Silverman says, “I believe Rachael and Scott might just shame our shameless government enough to move the needle,” “I’m grateful for the chance to help get eyes on this crucial documentary.”
https://www.hollywoodreporter.com/movies/movie-news/sarah-silverman-diabetes-insulin-documentary-1235084792/
XX
Our long format episode this week is Molly Schreiber who lives with type 1 and rheumatoid arthritis. Medication for the latter made the decision to get a COVID vaccine complicated and she shares her story. Next week we’re talking with the people at SIGI pump.. a new tubeless rechargeable pump that got breakthrough device designation last fall.
Listen wherever you get your podcasts
That’s In the News for this week.. if you like it, please share it! Thanks for joining me! See you back here soon.

Feb 8, 2022

People with diabetes were encouraged to get a COVID vaccine early on when the shots were released. But what happens when you live with type 1 and another condition where the vaccine recommendation is more complicated?

Molly Schreiber lives with T1D and rheumatoid arthritis. Her doctors told her to absolutely NOT get a COVID vaccine due to treatment she was taking for the second condition. She was able to eventually get vaccinated then, despite taking precautions, she and her entire family got the Omicron variant. They’re fine now and Molly has a lot of good info to share. She also has several family members with type 1 and has a lot to say about how we care for older people with T1D.

Molly works at the Community Manager for Savvy Coop.

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

Type 1 Diabetes with Other Autoimmune Diseases 

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

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Episode Transcription Below (or coming soon!)

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DEXCOM

Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921, where Diabetes Connections are made.
This is Diabetes Connections with Stacey Simms.
This week, people with diabetes were encouraged to get a COVID vaccine early on, when they were released. But what happens when you live with type one and another condition where the vaccine recommendation is… complicated?
Molly Schreiber 0:35
And I messaged my rheumatologist and I said great news. My hospital has the vaccine in I can get an appointment. You know, I was super excited. And she called my cell phone immediately and says You could not get that vaccine and it was a gut punch. What do you mean, I can't get this vaccine,

Stacey Simms 0:52
Molly Schreiber lives with type one and rheumatoid arthritis, she was able to eventually get vaccinated, then despite taking precautions, she and her entire family off the omicron variant, they're fine. And she has a lot of good information to share. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show, always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. And one of those people had a really bad low last night, as most of you know. And if you are new, I will explain my son, Benny was diagnosed with type one right before he turned two, he is now 17. We use the control IQ system with Tandem and Dexcom. And I gotta tell you, it has been a while since that urgent low has gone off on my Dexcom app. And I really don't remember the last time he had an urgent low that he didn't treat pretty quickly. You know, he very rarely asks for my help. We are at the point now where I have turned off all of the Dexcom alerts except that urgent low.
But in the middle of the night, it was like one o'clock in the morning it went off. And I don't know, you know, usually I would have waited and just said maybe he's got it. He always had stuff in his room. But it was It wasn't in 55 It was 42. So I said, you know, I'm gonna just go check on him. And they brought up a juice box like I have done a bajillion times, you know, when he was little, it's so funny. I gotta say, you know, the juice box used to seem like a big deal, a big amount, I should say. But it looks so tiny. He’s now like six feet tall, but I brought it upstairs.
And it was immediately clear that this was a real low. This wasn't a compression low. He wasn't leaning on the Dexcom. He was disoriented, he was sweaty, he was super hungry. So he drank the juice box, I got him some crackers. And then I sat with him for a little bit. And he started to kind of come back to himself. But he was so hungry. And you know what this is like, I don't know about you. But he was sometimes I really try if I'm with him, which isn't the case all the time anymore. I tried to say you know, you've had you've had your 15 or 20 carbs or you know, when he was little you had your four to eight carbs. And let's just sit because you know, you're going to be okay. Now, you know, you're not going to be hungry in 15 to 20 minutes. But man, that urge to eat. I mean, I know his brain is screaming at him. So I was like, you know, forget this. I went downstairs and I got him some more food. I figured I can always give him more insulin for it and who knows. He just really still felt bad. So we overtreated which, again, we haven't done it a long time totally overtreated. And, you know, he finally felt better and was able to go back to bed. But you know, my adrenaline is like, through the roof. I finally did get back to bed. But I'm sure that he felt much worse than I did. I oh my gosh, it's been a long, long time. I'm sure many of you were asking, Well, what happened? The truth is I don't know what happened. I didn't ask him in the moment. I mean, he's 42 he's not gonna have a coherent answer. I don't really care. I just wanted to treat the low and then go back to sleep.
I’ll ask him tonight at dinner but I gotta tell you at this point, 15 years in the answer he has diabetes is good enough for me. My guess is he ate something and gave too much insulin. Or I know we put a new site on. Maybe that was like a super absorbent site. You know, sometimes that happens, you just hit that sweet spot. And it's just the insulin flows somehow a lot better in that place. If it was really interesting or unusual, I will report back but I only bring it up because it has been a long time. Since I've had to treat a low like that in the middle of the night. It made me remember all those times, you know, not just before control IQ but before Dexcom when that would have been you know a finger stick every five minutes while we were waiting for him to come up and you know, very different times. I hope we all get a better night's sleep tonight. And like I said, if it's anything really interesting or if there's a follow up here, I will let you know.
Alright, this week's guest is somebody I've known for a long time through the diabetes online community. She certainly remembers a different type of technology. We did get to meet in person at a healthy voices conference in Chicago nearly six years ago. We talked about that at the very end of the interview. That was so cool. Hold that conference was freezing. But man, I would love to go back to more in person stuff even if it's freezing. Molly Schreiber was diagnosed with type 1 diabetes as a child in 1989. Her father, grandfather and a cousin all lived with type one as well. In 2018, she was also diagnosed with rheumatoid arthritis. I follow Molly on social media, she's been very open about her struggle, not just with these conditions, but with how difficult COVID has been for her. You know, with autoimmune stuff, you want to be more careful. But her art a diagnosis rheumatoid arthritis diagnosis made getting the vaccine a tough decision. And then when her entire family did catch COVID During this omicron search, it made that more difficult to Molly has been a longtime blogger in the diabetes community. And I'll link up some of what she has written. She is currently the community director for savvy cooperative, and she explains more about that as we talk. I do want to say, you know, Molly really is an incredibly positive person, but she's not a Pollyanna. She keeps it real. And it was great to catch up.
Molly, welcome to the show. Thanks for coming on.

Molly Schreiber 6:08
Thanks for having me.
Stacey Simms 6:09
All right. Before we jump in, or talk about anything, I have to ask, how are you? How are you feeling as your family

Molly Schreiber 6:14
were okay, we all, you know, had the pleasure of having COVID Funnily enough, we pulled my daughter from college because it was getting pretty intense down there and gave her COVID When she got home, so really failed there. But no, we're all doing a lot better. It's been almost three weeks now. So

Stacey Simms 6:31
yeah, I'm glad. And um, you know, there's an awful lot to talk about leading up to that diagnosis, but I'm glad everybody's doing okay. Scary stuff. Yeah, this is usually where I asked people to tell us their diagnosis story. And I'd like to start there with one additional question if I could, because you don't live with just and I put that in quotes with just diabetes. Right?

Molly Schreiber 6:50
Right. I was diagnosed with type one diabetes, when I was a kid, when I was back in 1989, I'll date myself, and I knew a lot about the disease. So my father had type one or had type one and his father and then my paternal cousin. So type 1 diabetes was very much in my life, you know, needles were around testing. At that point, testing blood was not as common as urine. But um, you know, it wasn't a shock, I should say, a lifestyle change. We were already kind of living that. But fast forward to about 10 years ago, I was diagnosed with rheumatoid arthritis, which, yeah, the just living with both is definitely a challenge. They don't, you know, unfortunately, autoimmune diseases can come, you know, in pairs or in groups, you tend to be a collector, but they don't necessarily get treated, or even you have similar symptoms to each other diabetes and RA,

Stacey Simms 7:51
would you mind and Pardon my ignorance? Would you mind talking about RA for a moment what that is?

Molly Schreiber 7:56
Yeah, so the easy way to sort of translate it to the diabetes community is instead of attacking I slit cells, my immune system is attacking my joints, and specifically the synovial membrane, which is sort of that lubricating fluid that's in your joints is not immune disease, as well. So comes from the same family. As you know, and most of your listeners, we don't really know why yet, it happened to me very, I would say suddenly, and I had sort of just an elbow pain thought I grabbed a bag, wrong, you know, off of an airplane on on a weekend trip and just thought, I've asked to push that bag too hard or done something and within a month, I couldn't straighten that elbow. So my arm was bad. And I got to have the fun experience of doctors telling me I was favoring it or had tennis elbow or all sorts of fun things. But within a few weeks, I couldn't walk downstairs and I was sitting because my feet and my knees and just did not then did not work. And I quickly went to the doctor and just said something's really wrong. And unlike type one where you get a blood test, and you know, if your blood sugar is a certain number, there's a pretty good chance you know that you're going to be diagnosed with diabetes with RA, there is a blood test. Lucky for me, I tested positive but plenty of your listeners if they have RA they not not everyone test positive. So you could go down a very long treatment of trying to figure out what's wrong. What is the treatment? Is there treatment? There is there's a couple different treatments, so definitely medication. So you would start with what are called disease modifiers and the most common one that people might know of is called methotrexate, it can be used all these drugs can be used for cancer, but these are used in the RA and similar disease spaces in much smaller doses. So yes, you may if you look them up, see them referred to as chemo that they are just given in lesser doses. So we have those drugs. Most of the time. They don't do enough and you need something that's called a biologic and There are quite a few options. To be honest, this was the hardest part for me. All right, is that I went from living with type one, you know, basically my whole life and there's one treatment, right? There's insulin, everybody takes it. You know, we might have the rare person. I'm sure everyone's heard of someone that was maybe allergic but you take it it works. Does it work perfectly? No real? No, that doesn't always work the same. But everybody takes it. But with a biologic. And with other treatments with these arthritis, autoimmune conditions, it's a gamble. You know, what commercial? Did you see that maybe you want to try that one is a literal question from your doctor. Wow, it is a true gamble of what's going to work. They don't know yet. Why some jobs work and some don't for people and what works for me, if you were to be diagnosed with RA, it might not work for you. It's just a complete gamble. And they don't last forever. So some people have had success for a long time. Others have tried multiple drugs because they lose efficacy. We'd like to say that the drug failed the patient. Patients like us are tend to sort of internalize it and say, Oh, I failed that one. But no, we're gonna say that the drug failed that

Stacey Simms 11:11
I'm pausing here, I'm just gonna kind of stuttering because I'm trying to figure out how to ask this. What I'm trying to say is, with type 1 diabetes, and RA, you're mentioning insulin, you're talking about biologics and other medication, any dangerous interactions, anything that you specifically have had to look out for.

Molly Schreiber 11:24
Yeah, so a couple different things. So one of the initial treatments for rheumatoid arthritis, and it can be a treatment that a lot of patients stay on are steroids. And so plenty, you know, if you have diabetes, and you've ever, you know, had even a horrible bronchitis or pneumonia, or maybe you've had to get a steroid injection, you know, that horrible boost, your blood sugar is going to take them after you have started either that steroid pack or you've had that injection, well, a lot of patients are on a long term dose of steroids. For me, that's simply not an option. And I say that for myself, because, to me, the the struggle of managing my blood sugar as well on them. And also just the feeling of being on them is not worth the side effect of the you know, I'm not getting enough bang for my buck, you know, with with a steroid, so it's not worth the added stress. That's not to say you can't manage steroids, you know, our pumps and our different basal rates and everything, do great things. And I even have a steroid profile in my pump. If for when things get bad, yes, I will go on them. I'm not going to be too prideful. But steroids are first line of defense, they make you feel better quick, they get you back to life, you know, and for me, there's that added habit of blood sugars. But then there's also that little piece of how we're susceptible to getting sick, you know, where our cold takes a little longer for us to recover from, you know, and when you're on these additional medications, you want to keep your blood sugar in check, because when it's not, you're feeling worse, and you're more susceptible to those complications. So there's just that added caveat, you know that you want to stay as healthy as possible, but you're on these drugs that are really, they're calming down your immune system, so it stops attacking you. But in that same breath, they're also not preventing you from getting sick.

Stacey Simms 13:17
I'm going to come back to your family's experience with type one as you listen, I don't want you to think that I'm going to skim over that we're definitely going to revisit that. But keeping our conversation about ra here with COVID. You are one of the first people I remember seeing on social media in my circle, certainly that was talking about issues with either being able to take the vaccine or wondering about being able to take a COVID vaccine. Is that because of the biologic or the medications or is because of the RA condition itself?

Molly Schreiber 13:48
Yeah, so it's a little bit more on the medication side, but a lot of patients again, are on a ton of different biologics. And so at the time when vaccines first came out late in December of 2020, as their confer hospital then and with that came with being eligible to get a vaccine early, which is great. Sounds wonderful, right? I was super excited that I was in a drug club or Texan or Texans are really strong line of defense. With Ra. It's used a lot with non Hodgkins lymphoma as well. It's pretty in terms of the drugs you could be on. It's a pretty heavy hitter, but when I went on it three years ago, I needed it. My disease was in a space that needed it and it worked. I just had an infusion. So vertex in isn't infused by logic. Some people get it once a year, the earliest you can get it is every four months to talk to infusions every four months and repeat. So I was on that schedule, and I'd had an infusion in October, and I messaged my rheumatologist and I said great news. My Hospital has the vaccine in I can get an appointment. Yeah, super excited. And she called my cell phone immediately and says You could not get that vaccine and it It was like a gut punch. What do you mean, I can't get this vaccine. And she said, look, the ACR, the American College of Rheumatology, you know, like a lot of us even still, to this day, we don't know everything, still trying to figure it all out right in terms of COVID. But they know that you need to at least be as far away from that biologic infusion injection as possible for the vaccine have a chance to work. And since I had just had it, I wouldn't be due for my next one until March or April. And she said, We got to try to get you to March or April. And there is a little bit of history behind this. So a lot of patients that have been on vertex in the flu vaccine, for example, doesn't work in one dose, sometimes it's recommended that they get two doses to be able to have an immune response. So they at that time, were kind of basing it on that. And so I waited. And it was incredibly frustrating. I'm pretty sure that's probably what you saw on my social channels, was that here's this thing that we've all been waiting for, with the promise of it, getting back to our lives, but also the promise for, you know, auto immunocompromised patients like myself to feel a little bit more safe, you know, we could get this vaccine and finally feel safe. And I just couldn't get it. And so I had to wait. And the only other thing that came with waiting as I went back into our sort of statewide system of trying to get an appointment, which I think everyone probably still have stories, I'm getting an appointment or getting a test and had to wait and get my initial vaccine. I got that in April, when I was earliest I can get an appointment.

Stacey Simms 16:40
I feel like I may have missed something. I'm sure you said it. Did you have to go off your medication and in order to get the shot to get the vaccine?

Molly Schreiber 16:47
Yeah, so with the toxin and retexe intakes, obviously, everything varies, but the the longer you can have it out of your body, the better. So your body can start, you know, kind of revamping and not being so suppressed. And so with vertex and they wanted me to try to wait six months, I sort of made my own compromise of April, it would have been nice. And with that came a discussion with my rheumatologist. And she frankly told me that she wasn't keeping any of her patients on this drug until COVID was sorted. And this was again a past discussion now, right? Right now it's as we know, we're not going to stay on this drug because of how unprotected you can be against these viruses that are popping up. And she and I agreed that since I still had some other options on the table, that I would try something else. And retexe in its place, obviously, if she had patients that truly, you know, it was the difference between walking and not or, you know, work and not she was not going to take the drug away from them. But we had to have a frank discussion and with our eye, again, back to what I said earlier to gamble when you take a medication, so it was another Okay, Let's gamble and see what this next one might do. While I was on one that was working.

Stacey Simms 18:10
And then after all of that, like many who were vaccinated and boosted buzz, you know, being very careful. Masking up. You got film Kron virus got you got omachron. So I hate to say like, what's your reaction? Because I think we would all have the same reaction. But you went through so much.

Right back to Molly in a moment, but first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. And why not, it's not just that you stopped needing a CGM, the minute you turn 65. The good news is that the Dexcom G six continuous glucose monitoring system is covered for Medicare for patients who meet the coverage criteria. If you have either type one or type two diabetes and intensively managed insulin you may be covered. To find out more about what that means. And if you qualify, check out dexcom.com/g six dash Medicare and I will link that up for this episode. You don't need to write it down. It will be in the show notes at the homepage at diabetes connections.com You're going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money learn more again it's dexcom.com/g six dash Medicare. Now back to Molly talking about her family's experience with COVID.

Molly Schreiber 19:37
So I'd had my two doses that are that had the Pfizer vaccine I had an April and May and then I actually got a third dose that they're not calling it a booster but a third dose and August because it wasn't that six months but they offered it to patients that were immunocompromised this is I know there's so much has come out from the FDA and the CDC this probably was a blip But that

Stacey Simms 20:02
now remember, right? Yes,

Molly Schreiber 20:04
it was a blip and but it was a big blip for me. And so I went and got a third dose all along. I had participated in a research study through Johns Hopkins, which I know a lot of patients have done in, they were just trying to see efficacy in the vaccine with patients with different kinds of autoimmune conditions or health conditions. And so they tested your antibodies before and after each of your vaccine doses. So with my first two, I didn't have any antibodies. I got my third dose so quickly, because I was so excited that happens hadn't been ready with their lab slips yet. So my rheumatologist tested me in November, and showed that I still didn't have antibodies. And I found that out the week before Thanksgiving, and she said, you know, you really need to just stay in your bubble. And I'm like, I've been in this bubble for a long time. But like I mentioned, I have a family. You know, my husband works at the airport, my son works, my daughter goes to college. But luckily, everyone, like you said, We're maths, they're all vaccinated and boosted. Everybody was good. We daughter's college was getting a rise in cases, and they switched exams to online. So my husband ran down and grabbed her right, the week and a half before Christmas. And then that Saturday before Christmas, we all thought a little off. And knowing that there are monoclonal antibodies that I could maybe get, if I were to get COVID, I've been instructed multiple times by all of my doctors, you know, you get these if you get COVID, call us, we took a test, my husband was positive, I was positive, my daughter and my son, and I didn't see it coming, like I said, grabbed my daughter and brought her home and gave her COVID. Right. At school, I really missed the mark as a parent on that one. But it's not a cold, it's not a bad cold. It's not what I guess a lot of people are sharing, at least it wasn't for my family. And I know that I mentioned that I didn't have any antibodies, but my family dead, they're healthy. They're my daughter's 18, perfectly healthy, and had the 102 Fever, the vomiting, the cough, the body aches like you couldn't imagine. And I the sounds so awful to say but they actually understand a little bit of what our eye fatigue is now, because it was so intense with with COVID that I just said, you know, when you felt like you didn't have that extra oomph to pull on. That's what it's like. So I did get a little taste of that. But now, you know, we're about three weeks out doing so much better. But I'd be lying if I didn't say it was a little scary, you know, at times, especially with where our health system is right now.

Stacey Simms 22:43
I'm so glad everyone is doing better. I know so little about Ra. So forgive me if this is a dumb question. Are there lingering issues or concerns that now you have to think about in terms of what medication you're able to take or anything like that, because of having COVID?

Molly Schreiber 22:57
There are so with my rheumatologist, we've been kind of you know, going back and forth. I'm incredibly thankful for portals because I could send messages whenever I had energy, it was great. She said that there's a couple things to be concerned about. She said that they've seen that a lot of patients with autoimmune conditions tend to shed the virus longer so that I'm going to say 10 days I know now it's five days, whatever it is, right? When you listen to this podcast, whatever amount of days it is that they're saying you need to quarantine for, they're saying that they're finding that patients like myself can shed it longer. So that is a concern for you know, if I were to say, Hey, I'm good and you know, go to the party I haven't gone to in many years, that's a concern for the public that the other thing is because I could still be shutting it. They're not sure when to start my biologic backup. And so basically, we're kind of going week to week my rheumatologist just wants to make sure I have zero symptoms, just not even a cough or runny nose. Nothing that could you know, taking something to oppress and suppress my immune system, you know, could trigger and so there's there's that but really, it's just the twofold wanting to keep others safe of them still shedding, you know the virus longer because like I said, we missed Christmas and my mom, you know, was like, well, when can I come up? And I'm like, I don't know. I just don't know and I'm never gonna put her at risk. So I think there's still as awful as it is so many unknowns right now.

Stacey Simms 24:34
How Okay, nosey question you don't have to answer How were your blood sugars? Was it difficult to manage? Did you do okay during all of this,

Molly Schreiber 24:41
so that is how I knew it was coming honestly, I think a lot of patients would probably identified that they could tell Oh, I should have known I was gonna I was getting sick, my blood sugar's are higher but my family got very sick that weekend. And on that Sunday, kind of boasting that the one with no in bodies just had a runny nose, you know? feeling great. And that night, my blood sugar started going up. And for me, you know, I'm home, I work from home. Like a lot of people, I kind of have a routine, you know, if I eat or drink, you know, that boring stuff that you can do with diabetes for a long time. And so my blood sugars are pretty good. Of course, there's random days for you're like, What in the world is happening, but this was consistent. This was, you know, I'm not eating something. And I'm just high, you know, it is just higher than normal. And the next morning that Monday, I woke up with 102 fever and felt awful. I actually used I mentioned earlier that I had a steroid personal profile in my pump for when I do get infusions, they come with that infuse steroids, and it has a higher basal rate and a little bit more of a carb ratio in there. And I put that on when I was sick. And so that helps with keeping my blood sugar's under control when I just wasn't feeling well enough to even deal with my pump. Honestly, I was very grateful that I already had that setup. Might be a little too aggressive. I'm not sure. But it was nice, because I don't think I would have had the energy to think through a whole new basil program.

Stacey Simms 26:13
Yeah, definitely. I totally understand that. And it's funny, as soon as you said, you look back at those blood sugars. Oh, yeah, I should have seen it coming. I mean, Vinnie said diabetes for 15 years. I can't tell you how many times we still say oh, yeah, three days?

Molly Schreiber 26:26
Oh, I still do. I've had it for over 30. And I'll be like, should I know that was coming? I've only been through this a million times. Right? Oh, it's always after during you're like, why am i Hi? She makes no sense. And then the next day or like,

Stacey Simms 26:42
you know? So, as you said, You've lived with type one for 30 years, you were diagnosed in a family that was familiar, but at a time you said 1989? Where I'm guessing, you know, my recollection, home meters are just being introduced that sort of thing. Tell me a little bit about your Dad's experience with type one, if you don't mind.

Molly Schreiber 27:01
Yeah, my dad. So my dad was diagnosed in the late 1950s. And so my dad was in the time of boiling needles of no blood sugar testing at all, a lot of guessing. He would say just living his life as a teenager without thinking much about diabetes. He got there serious about his diabetes a little bit later. But because he had sort of grown up in this non technology way of managing type one. He thought it was great that I eventually got meters, pumps and everything. But they weren't for him. CGM weren't for him, nothing was for him, he would see the value for me that it was never. But it's funny when I see that funny, but I look at kids now. You know, I remember. And it's still a fear, but it was a strong, you know, fear of my, my own children getting tightwad, you know, I just, you know, you don't want anyone to experience anything that they don't have to. And so looking back, you know, I didn't have a meter at school, because we had a home meter that sat in the bathroom, you know, I had a snack every day, you had to eat your snack at the same time. And I that was my like, big cool thing about having type one in elementary school, but I look back and you almost have a moment of going, how did I survive all that, like, I didn't have this thing beeping on May 24/7, to tell me what my blood sugar was doing. And I went to gym class and I, you know, I, I survived. And so I a lot of that, I'll look back on you know, when technology fails, or you know, a server's down and all this, I just think back to the fact that I would go to school all day, without a meter with a pack of graham crackers, you know. And I'm still here, and I'm okay. And my dad, on the other hand, my dad, he learned sort of a way that I think a lot of people with type one, including myself, you can kind of slip into where you're very regulated, you know, dinner has to be at 630 because your body has to eat it. You know, and our pumps and everything and our short acting insulin have really given us flexibility, but my father was very regimented, because that was how he survived. You know, that was the insulin they had that was knowing how much food to have in his body at certain times. And so even my husband jokes that family dinner time is 630 because when he came into my family, that's what my father did. That's when he had to take insulin.

Stacey Simms 29:34
Did you say your grandfather had type one? Yeah. So

Molly Schreiber 29:37
my, my grandfather, my dad's father had type one as well. He passed away, right? Shortly before I was diagnosed with type one due to complications, but you know, it's so varied. I don't really even know. At that point. He never would have even experienced a glucose meter.

Stacey Simms 29:56
He diagnosed you know, the date or the year.

Molly Schreiber 29:59
So my dad was born in 48, January of 48. And I believe his father was mid 20s, when he was born so early, a long time ago, and so my dad got it. They used to tell him that diabetes always skipped a generation and a sex. Have you heard that I'm sure you have. And so my cousin who's female has it as well. And that really fed into my dad's thinking of that my dad was the oddball that if he hadn't gotten it, it would have fit the, you know, the mold would have followed the program, you know, but he really blamed himself that I got type one, he really, you know, for a long time, it was really hard for him, but he's also the one who knew to test my blood sugar. You know, my mom took me to the doctor 10 times, and I poison ivy that gave me type one of all the things I got poison ivy, and then just stopped eating and got out, went to the bathroom a million times, and my dad got frustrated and tested my blood sugar. So he didn't see it that way that he had saved me, he thought that he gave it to me. So it's a heavy emotional burden.

Stacey Simms 31:14
It's really hard. Yeah, such an emotional experience. And that's, you know, it's so difficult you think about the tools that that generation didn't have, and how they they did the best they could,

Molly Schreiber 31:22
yeah, so my dad, he, you know, had a bad low when he was living on his own. And this was back in 2015. And he fell and hit his head. And, you know, my father had had a onesies bill of five. And when I say that he lived a very regimented life, he did because that fear of, you know, what could happen if you didn't manage your diabetes was very prevalent, you know, for him growing up. And you know, he had laser eye surgery at Hopkins, when they were still testing on monkeys, like he had a very real fear of losing a limb and more, you know, really suffering. And so he managed himself extremely tightly. And that came with a lot of lows, you know, and we'll all say that your agency is only reflective, you know, of the broad range, you know, it doesn't show the 30s, you know, that you had, and even growing up, he had bad lows, I have many recollections of ambulances coming to the house. And so he had a bad low has had and was admitted to a nursing home, because he just wasn't 100% Ready to care for himself. So just rehab sort of the the problem is, and kind of mentioned this with technology. So we have the tech, right, we have glucose meters in every office everywhere. But even the nursing home staff didn't understand what type one was. So he would tell them, I need my insulin transferred from the hospital without any insulin, she would say, you know, be put down as non compliant. One of our favorite words, right, because he wouldn't eat because he knew his blood sugar was high, but they wouldn't test it, they wouldn't give him insulin, they thought he was just like a type two. And if he wasn't going to eat, he didn't need any insulin. And they would reference him and he said, it doesn't matter what type I am, I need insulin. To the point that, you know, he, no matter how much education we tried to provide, no matter how much he tried to provide, on his end, there was even one night he called an ambulance from his nursing home bed for insulin, because he needed insulin. And the true story is he ended up in DKA from this, and he passed away from it simply because nursing home staff and I'm not generalizing, I personally have not been in a nursing home, but I can only go by his his information of what's happened and others have shared, they simply didn't understand that insulin, you know, is, is air and water for us, you know, we need it, we cannot live without it, and ended up in DKA and didn't come back. And that all stemmed from lack of understanding diabetes, which has been around forever. I just mentioned my great career, my grandfather, it's been around a long time. And so it's really important to me and I, I've talked with a lot of fellow diabetics who are, you know, and early 40s. And we've talked and it's a real fear. And that kind of comes into COVID. You know, what if you end up in the hospital, and can't manage your own disease? And so I think that that's a real fear, even today, you know, if you get COVID, if God forbid, you know, need to be on a ventilator or just are unable to care for yourself what happened?

Stacey Simms 34:36
No, it's absolutely terrifying. And I know that sharing that story is not something that you do lightly. You know, it really is amazing to see these concerns. I don't know how well they're being addressed. All we can do is keep talking about them, and keep educating. So thanks for bringing that up. I do appreciate it.

Molly Schreiber 34:54
Yeah, I don't have the answer. Like you said that. I think we'll figure something out of everyone just shares and

Stacey Simms 35:00
Before I let you go, I do want to ask you about your job because you're, you know, we've been talking what we basically talked about for the last few minutes is patient advocacy. And that is something that you are you're doing in your job day to day with savvy, tell me a little bit about what this organization is and what you're doing.

Molly Schreiber 35:15
Yeah. So savvy, cooperative, founded by two patients to Jen is in the juvenile arthritis space. And Ronnie are other co owners, the cystic fibrosis space and like myself, like probably a lot of people you know, and even you to have had the pleasure of being at, you know, the different tables, you know, pharma tables, companies that are trying to make products better for, you know, all types of different health conditions. And eventually, like myself, Ronnie, and Jen found themselves looking around the table and you see the same faces. And I've met some great friends that way. But are, you know, are all the white women at the table really representing the patient voice of rheumatoid arthritis? You know, and we're being asked questions like, well, what does someone do you know, when they can't afford rent or medication, I am privileged enough to not know what that feels like. And a lot of people are in So Jen, and Ronnie just said, What can we do. And so they started this Co Op. And what that means by a co op is a co op is owned by its members. So we're literally a patient owned organization. And what we do is, quite simply, what I just said, is try to bring every voice to the table, try to have, you know, if a product is created for the HIV community within the HIV community to be at that table, creating that project, you know, and that product and medication and treatment. And so that's just like a very nutshell of what we do.
But we basically have people come to us, and they want to know more about a health condition, or they have an ideal treatment, or medication or an app, or a variety of things. And they asked us to find the people and maybe do the research and do the interviews, and at the end products and ideas and medications or treatments are being co created with the patient, rather than the patient at home seeing a commercial and going well, if they'd asked me, I would have told him that doesn't work. benefits, both the company and the patient. And thing I like to share that's a great example of what we do is a lot of people have heard of Amazon, I'm going to go ahead and assume and maybe even Alexa, and they did a study with us where they wanted to improve Alexa so that people would voice impairments, like stutters and different things could communicate better with her. And now they have a patch that anybody can get add into their Alexa. And it lets more people use that technologies here. And so that is just a small example. But I think it's a great one, you know, showing how something that they took to actual patients and had patients use and give feedback now benefits the greater world and all patients. And so that's what we do, I realize I give a very, you know, nutshell, I work in communities and the community director, which means I get to talk with patients and partners organizations all day, which is a great fit for me because as a patient, which is gathered by now, I really wouldn't want any patient to not feel like they're part of the community, and that they're alone in their journey or that their voice isn't important. So if you know one person hears this, and it's like I've already in diabetes, which I'll reference the great Rick Phillips did for me years ago, made me feel like I wasn't the only person that had those conditions. And if that happens because of this will Stacy, you've done a huge job. I haven't been here.

Stacey Simms 38:57
I hope that happens. It's really as we've learned over the years, right? How just knowing that there's somebody else out there going through the same stuff makes a huge difference. Just one more checking if I could with your family. You mentioned you picked up your daughter, you know you wanted to keep from having coverage came home Scott COVID. How's everybody doing now?

Molly Schreiber 39:14
Everyone's doing okay, much, much better. But it's not lost on me that anyone can get this again at any time. So we're staying in a safe and our masked bubble for now.

Stacey Simms 39:25
Gosh, well, thank you so much for joining me it's so much fun to talk to you. I just you know I have to mention I remember when we first met I don't know why this just popped into my head maybe it's cuz I was I just miss traveling so much. Did we meet in Chicago

Molly Schreiber 39:37
at healthy freshmen airport? We I was

Stacey Simms 39:41
Yeah, I was wearing that blanket thing that I wear like really heavy winter coat anymore. Yeah, we met in the airport in Chicago. Geez.

Molly Schreiber 39:50
Yeah, that's where we met and I it was one of those great moments where you're like, I know you but now I actually know you you know like, it's like my honor. Lying knowledge and then by in person, which is the best because you really know people then

Stacey Simms 40:04
isn't that the time when there was this thing going around the internet, the kids probably call it a meme. But there's this thing going round where it was like, the only really good thing about the internet sometimes is when you meet someone in PR person that you know from online, it turns that first meeting from a handshake to a hug.

Molly Schreiber 40:20
Yes. That's what it is. Yeah. And I do now right now, I picture us waiting for our car together. years ago, too many years ago, because we've been traveling so long.

Stacey Simms 40:34
Oh, my gosh. All right. Well, here's to travel in the future. At some point, Molly, we will grab that cape blanket thing out of my deep recesses of my closet and we'll we'll meet again.

Molly Schreiber 40:45
Yes, we well.

Stacey Simms 40:51
You're listening to Diabetes Connections with Stacey Simms. I will link up more information about a lot of what Molly talked about there, including information about savvy cooperative, yes, that is the group that I have linked to in some emails. And in the Facebook group, a bunch of you have signed up to take part in their research studies. So if you're interested in that, be on the lookout, when it's relevant to our group, I will definitely share that with you. And sometimes there are opportunities to get paid, which is always nice.
It was fun to think about travel again, by talking to Molly and I have some things tentatively on the calendar, you know, you're always afraid now to you know, we got to make plans. But who knows. So I'm excited. In March, I should be going to Syracuse, I have an event at Syracuse University. This is an annual or at least it was before COVID and annual alumni event that I always have a lot of fun in. I'm trying to set up some kind of diabetes event as well, maybe for moms, maybe for families. So I'll keep you posted on that. I am talking to some local diabetes people in the Syracuse, Central New York area, and hopefully we can work something out.
Then at the beginning of April, friends for life Indianapolis is on registration is open. I still haven't pulled the trigger on that I haven't committed to going yet. But I'm pretty sure I'm going to maybe you can help me make up my mind. I think I'm going to be there. But regardless of me go if you're in that area, this is a great regional conference. And the hotel has like these train car rooms. It's a train station that's now a hotel. Definitely check that out. And looking down the road. There's gonna be some local events here in the Charlotte area in April and May and then it'll be friends for life in Orlando in July. So I'm hoping that there will be more in person events as the year goes on. Cross your fingers and hope we stay safe. Man, I'm not sure that it's I'm ready to say anything about a return to normalcy, but it would be a lot of fun to just see some people again and make those connections that you can make them online but there is just you know, as you know, something so different about him person, and I missed that. I miss that a lot.
Alright, thank you, as always to my editor John Bukenas from audio editing solutions. Thank you for listening. Wednesday, it is in the news. Don't forget I do this every week. We are live on social media and then it becomes a podcast episode that'll be out on Friday, just five or six minutes of news in our community. And next week's interview. Have you heard about the Sigi pump? This is a brand new insulin pump. It looks like it's going to be a competitor to Omnipod. There's some really cool features. It's not here yet, but I'm talking to this company about why they are trying to bring it to the US as soon as next year. We'll see what happens with the FDA and everything else but man this pump is really cool. And I can't wait to tell you more about it. Alright, that is all I am Stacey Simms. I'll see you back here soon. Until then. Be kind to yourself.

Benny 43:44
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

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