There's a new plan to manufacture and sell insulin at a much lower list price. The company behind it is non-profit Civica RX, which has support from JDRF.
Stacey talks to JDRF CEO Aaron Kowalski about what their role is here, how realistic this plan is, who it may help and a lot more. They also spend some time talking about the reorganization of JDRF and what the future after COVID 19 looks like for them.
More about Civica's Plan (we'll talk to them in a future episode)
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Episode Transcription Below (or coming soon!)
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Diabetes on TV and in movies is rarely anything close to accurate. Turns out, those media misconceptions can be real-life harmful. This week, Stacey is joined by Dr. Heather Walker, the co-author of (Un)Doing Diabetes: Representation, Disability, Culture and Dr. Phyllisa Deroze, who contributed a chapter called “Laughing to Keep From Dying: Black Americans with Diabetes in Sitcoms and Comedies.
Dr. Deroze & Dr. Walker both live with type 1 and both have difficult diagnosis stories that influenced their experiences with diabetes going forward.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
More about Dr. Phyllisa Deroze
More about Dr. Heather Walker
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Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
This week, diabetes on TV and in the movies is rarely anything close to accurate. And those media misconceptions can be real life harmful. Here's one from the sitcom 30 Rock.
Dr. Phyllisa Deroze 0:30
Tracy has diabetes there. And he does this skit where he replaces his foot with a skate. And he's like I'm practicing for when I lose my foot to diabetes. And that is the thing. There was a diabetes diagnosis and the next scene, he's already imagining himself with an amputation.
Stacey Simms 0:49
That's Dr. Phyllisa Deroze, who wrote a chapter in a new book we're talking about this week. The book is called (Un)Doing Diabetes Representation, Disability Culture. And it's authored by Dr. Heather Walker, Dr. Deroze and Dr. Walker both live with type one, and they join me for a great conversation. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show, I am always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. This is our first show of 2022. So Happy New Year, everybody. I hope you're doing okay. Still stressful days for everybody. But hopefully you can kind of come along with me every week, as we talk about what we're finding interesting in the diabetes community.
And I say that because 2021, I decided I was going to focus on technology for the year, I was going to try to do as many episodes as I could, talking about new technology talking to these companies. And I did that although I gotta say the log jam at the FDA made that a little difficult, right? I mean, we thought we'd have a lot more new technology. And a lot of companies will not talk about stuff until it is FDA approved. So this year, I'm going to stay with that because the technology episodes are what you have told me you are the most interested in, in fingers crossed are going to have some approvals pretty soon. But I gotta tell you, I've also decided that I'm going to do shows on just whatever the heck I find interesting. I started this show seven years ago, this coming summer, and honestly, this might be the last year of it in this form. I mean, I love it. I love doing this but seven years is a long time for any project. I have some new things that I'm working on. I'm not sure how much time all of it is going to take. I'm not abandoning the podcast by any means. I want to hear from you too. As we go forward. You know, as the year goes by, I will keep the lines of communication open. We will figure it out together.
This episode does fall into the category of something I am fascinated by and I love to talk about and that is diabetes in media. And by the way separately. Both of my guests this week have bananas misdiagnosis stories, we get to that right out of the gate. Wait till you hear what one of their doctors ended up doing. I have never heard this happening before. It was pretty wild. And we will talk about the book I mentioned that it is (Un)Doing Diabetes Representation, Disability Culture. It is authored by Dr. Heather Walker and Dr. Dr. Bianca C. Frazer. It contains essays by other authors including Dr. Phyllisa Deroze a little bit more about the book in its public description. It says undoing diabetes is the first collection of essays to use disability studies to explore representations of diabetes across a wide range of mediums from Twitter to TV and film to theater fiction, fan fiction, fashion and more. In undoing diabetes Authors deconstruct assumptions the public commonly holds while writers doing diabetes present counter narratives community members create to represent themselves.
And just a little bit more about my guests. Dr. Heather Walker is Associate Director of qualitative research at the University of Utah health. She was diagnosed with type one at age 11 in 2001, and Dr. Phyllisa Deroze began blogging at diagnosed not defeated almost immediately after being misdiagnosed. She found out later with type two diabetes in 2011. And now she has been correctly diagnosed with LADA. Dr. Phyllisa Deroze is also the founder of Black diabetic info after the interview, and it's a pretty long interview. And that's okay. They have a lot of great stuff to say, I'm going to come back I want to tell you about something that happened to me. It's not quite diabetes in media, but it is diabetes jokes. So I want to tell you how I handled something in a Facebook group. But I'll come back and do that after the interview.
Dr. Phyllisa Deroze, Dr. Heather Walker, welcome. I'm so happy to talk to you both. Thanks for coming on.
Unknown Speaker 4:50
Stacey Simms 4:51
So let's start if we could, I mean there's so much to get to and I was so excited to see you both at friends for life and see the presentations that you were doing but which You mind kind of backing up a little bit and kind of letting people get to know you? We could start just tell me a little bit about your diabetes diagnosis story. And Phyllisa, let me let me ask you to start with that if I could.
Dr. Phyllisa Deroze 5:12
Um, yes, I was diagnosed shortly after getting my PhD in English literature. I had moved to North Carolina, I experienced the classic symptoms of hyperglycemia. I had seen a physician who didn't check my blood sugar told me that I just needed to drink Gatorade because my electrolytes were off. A little later I was in the hospital. Blood sugar didn't register. Finally, I think first reading was like 597, or something like that. So I was told I had diabetes, and what type didn't get clarified until I was discharged. When I was discharged. I was told that I had type two diabetes, and I lived with that diagnosis for eight long years, it was inaccurate, I was misdiagnosed. I live with latent autoimmune diabetes in adults. And I was correctly diagnosed and joined the T1D group in 2019. I get this
Stacey Simms 6:06
question. Every time I speak to somebody like yourself who was misdiagnosed like that it happens so often. How do you live with what is really type one for all that time? I mean, I can't imagine you felt very well.
Dr. Phyllisa Deroze 6:20
I did. Okay, after diagnosis, I had a pretty long honeymoon phase, I actually lived about three years with just diet and exercise. I think one thing in the T1D community is that we don't talk enough about honeymoon phases and people who have latent autoimmune diabetes and adults, because so much of the common knowledge about type 1 diabetes is that everyone is insulin dependent. And that's not necessarily true, everyone will become insulin dependent. And that's an important message, because I never thought to have test done until I went into DKA. Again, so I myself didn't know that it was possible to have type 1 diabetes have a long honeymoon period and be misdiagnosed.
Stacey Simms 7:09
Yeah. The more I learned about Lada, it is so similar, but it's so different. There's a lot more to it, I guess, is what I would say, than I had realized for sure. Heather, what is your diagnosis story? When were you diagnosed with diabetes?
Dr. Heather Walker 7:21
So I was diagnosed at 11. And I also sort of have a misdiagnosis story. So I had diabetes, and I was in what I assumed to be a honeymoon phase for three months before my diagnosis actually came around. Because I was seeing a physician at the time who looked at me, skinny white girl, whose parents were really afraid because she kept losing weight, who was just about to hit puberty, and he thought eating disorder. No matter how many times I told him, I was eating everything in sight and drinking everything in sight. That's still what he firmly believed. Luckily, at about three months after I started coming in to see him for this and for the symptoms, he went on vacation, and I got to see his pa instead. And his pa John, you know, it's so funny. I don't even remember his last name. But just he's just warmly John to me, right? He just looked at my chart, and he knew right away, it's like, oh, you have diabetes, you know, so calmly, and I remember that freaking me and my mom out. We were in the appointment. It actually was my dad. But still, the first thing that we did was went and got me a doughnut because I think my dad was like, alright, well, maybe this is it. You know, he'll never eat another doughnut. Yeah, like, we really don't know about this, we don't know what's gonna happen. And so they didn't do a glucose tests on me. They just drew blood. So we didn't know right away anyway. And then it was like, you know, the next day, they called and said, You need to come to the hospital and for US history.
Stacey Simms 8:45
I'm guess I'm gonna get ahead of myself a little bit here. I don't want to start drawing conclusions too early in this interview. But it is interesting how both of you were misdiagnosed. Somebody else made an assumption, because of how you present it to them. I've got to imagine. So Heather, let me ask you. And then Phyllisa, I want to ask you the same question. But other how has that stuck with you? I mean, you you kind of set it so matter of factly they're like, Hey, he assumed I had an eating disorder. Did you kind of carry that with you?
Dr. Heather Walker 9:11
Oh, yeah, absolutely. I think I got a huge chip on my shoulder. From that. I mean, there's something about you know, being 11. And being in a world that already doesn't take you seriously, and then have a life threatening disease thrown at you. And your doctor doesn't believe what you say, even before diabetes. And Stacy, I've heard on episodes of your podcast you talking with with teens about or people who were teens with diabetes, about how fast it speeds your life up, right? Like you don't really get to have a childhood you don't really get to be a teenager and like, you know, carry on with reckless abandon because you just can't because there's all these safety things that you need to take into account. And so, but even before diabetes, I was kind of like that, like I was, you know, a 30 year old and a 10 year old body. I've been the same Age since then until now, but that, for sure gave me a big chip on my shoulder. It made me want to like, look into everything and see as it's happening to other people is like what's going on with this diabetes stuff.
Stacey Simms 10:13
Phyllisa, I'm curious for your experience too, because as you you kind of already said something interesting, which was like, Well, I didn't know how were you supposed to know? Right? The doctor supposed to know.
Dr. Phyllisa Deroze 10:23
Right. What's interesting is that when I was told that I needed to look into LADA because I had given a speech in Dubai to a roomful of doctors from the MENA region, Middle East and North Africa. And I was simply telling them my diagnosis story, very similar to what I share with you is a little more in depth, but pretty much that was the basics. And you know, I'm 31 years old at the time. And so during the q&a, some of the physicians from Tunisia, they raised their hand, and I was like, yes, they were like, well, your story kind of sounds more like LADA than type two. Are you familiar with it? And I said, not really. I mean, I know Cherise Shockley has it, but I don't know any more details than that. And it was at the lunch afterwards, one of the physicians came up to me and she said, you really ought to look into seeing if you have a ladder, and don't stop until you get the answer. And that kind of haunted me like, don't stop until you get the answer. But I just thought it was a simple request. So I asked my Endo, I got told no, I asked three months later, if I had ever been tested, the answer was no. Well, can I get tested? No. I saw a second opinion. No, you have type two. So I definitely think their view of me being an African American woman living with obesity played a lot into the constant denials. It took me over a year, another decay episode, and begging my gynecologist to run type one antibody testing for me in order to get it. So it wasn't easy. I literally had to not stop until I get the answer.
Dr. Heather Walker 12:11
For Phyllisa, it was your OB they finally gave you the testing you wanted?
Dr. Phyllisa Deroze 12:15
Yes. Because I told her, I can't get an endocrinologist to run this test. I know I'm in decay, a I'm losing weight rapidly. And she listened to me and she said, Okay, she said, I don't do endocrine, I do you know, OB GYN. So we were literally on her computer on Google trying to find the codes to request the testing. And so she was calling around, what do I put in to order this? And I remember when she called and she said, Listen, you know, this is out of my field. But come get these results, because your endo was going to need to see them. That was all on me. I got the results. I just remember seeing the get 65 should be below five. And mine was greater than 7500.
Stacey Simms 13:05
Oh, I'm almost speechless. I mean, I'm not I'm never actually speechless. I came in less than that happened. But the idea that you have to work so hard to get those answers, I've got to assume just like with Heather, that had to inform not only your experiences going forward, but the way you help other people because you both are extremely active in the community. You You're both very prolific writers, you both have, you know, studies and presentations that we're going to talk to, but Felicity, that whole experience with somebody else saying, Well, I think you have lotta to I got to get answers for myself to finally getting them. When you look back on that, how does it inform how you talk to other people about
Dr. Phyllisa Deroze 13:43
diabetes? I tell people definitely to be way more assertive than then imagined. Like, I honestly did not think it would take me constantly asking for the results. I thought it was like a simple test. I mean, you're testing my cholesterol, you're testing my a one C, like you're already getting a vial of blood, like just check off one antibody. So I thought it was something simple. And it turned out it was not, which was very frustrating for me. Because like in that I realized my education level didn't matter to them. I was literally like you are African American living with obesity. And that was what I believed to be their motivating factor to deny me testing. And what's so problematic about that, in addition to everything else you can imagine is as my physician Wouldn't they want to know that they're treating the right condition. Yeah, I'm asking so my records actually have a note from my endo saying, Melissa asked multiple times for type one antibody testing, and I denied it
Stacey Simms 14:55
literally says I denied it in your file.
Dr. Phyllisa Deroze 14:57
Stacey Simms 14:59
I'm just sorry. I got to ask, did he show that to you as an apology? Or did you sit there in the room while you made him write it?
Dr. Phyllisa Deroze 15:05
What I did was I refused to leave the appointment. I love it until there was this moment of record, like, I need you to recognize that I have been asking you for over a year for this test. We just need to come to that because it was like, Oh, you need insulin, let's go. And, you know, I was kind of being escorted out of the room. And I said, No, I'm literally not going to leave this chair until we have this conversation. And so I didn't know that my endo would put it on my records. But I definitely refused to leave until that conversation was had, they did apologize. And there was a note and my files.
Stacey Simms 15:47
It just didn't have to be that hard. This could have been an episode in and of itself. Want to make sure to get to that the research or the publications that sparked my interest here.
Right back to our conversation and right was like kidding about the diagnosis stories, and then her doctor putting in her chart that he was wrong. Oh my god.
Alright, Diabetes Connections is brought to you by Dexcom. I want to talk for a minute about control IQ, the Dexcom G6 Tandem pump software program. When it comes to Benny's numbers, you know, I hardly expect perfection, I really just want him happy and healthy. And I have to say control IQ, the software from Dexcom. And Tandem has completely exceeded my expectations, Benny is able to do less checking and bolusing. And he is spending more time in range. This is in a teenager, a time when I was really prepared for him to be struggling, his sleep is better to this is great for all of us basal adjustments possible every five minutes, the system is working hard to keep him in range. And that means we hear far fewer Dexcom alerts, which means everybody is sleeping better. I am so grateful for this, of course Individual results may vary. To learn more, go to diabetes connections.com and click on the Dexcom logo.
Now back to the interview. And we are moving on to Dr. Walker's book. Heather, tell me about the book that's coming out.
Dr. Heather Walker 17:14
Okay, I'm so excited to be talking about this. So you might hear that excitement in my voice. So it's awesome. The title of the book is called undoing diabetes representation, disability culture, that's a full title. And it's going to be released very soon, by the end of the year, we hope it's a collection of essays that looks at diabetes in a new way, the volume or the volume as a whole. You know, it points out that all the stereotypes of diabetes that the public really buys into are like maintained through a lens of individualism, our society looks at diabetes as a problem of the individual person right of their choices. And so to respond to that public tendency, right to like focus on the individual, all of our authors in the book do the opposite. So in the collection, they ask questions like, What do individualistic stereotypes reveal about the social conditions for the diabetic person? So it like flips it on its head? And also what do they conceal, right? What is stereotypes hide? What do they prevent us from seeing? And how do these like harmful narratives, these harmful assumptions, these stereotypes that just break down our community? How do they reinforce ideas that the public already has, for what constitutes like a normal or a good body, which is just like, as a person who's living with diabetes, this makes me so excited. And then I'll just add one final thing about the book, which is our collection is really unique in that we use disability studies frameworks to unpack all of these questions. What are disability studies? So this ability studies is a field of study that looks at the social conditions of disability. So how is disability perceived in society? How is it represented on the screen, and all of those types of things. And so we have frameworks in the field that we use, it's kind of imagined, like a camera lens, right? That's kind of like a framework and the camera lens has a filter on it. And so when we look at this movie, or this film, we're looking at it through a specific lens with a specific filter. In our book, all of our authors are looking at different types of media, through these disability studies, frames or lenses, and sort of seeing how they operate in society and what they do, and then poking holes at what it does. And every chapter is brilliant, and Phyllisa is going to talk about hers, but as a volume, like I could not be more proud of this collection and all the work that it does. And all of like the change and the shifts it's going to make for readers.
Stacey Simms 19:43
It's so interesting to me because of the mediums that you use so let's let's ask Felicity if you want to if you could talk about what you presented friends for life, what you talked about you were looking at TV shows, right and not unfortunately not more current ones which sometimes get it right.
Dr. Phyllisa Deroze 19:59
Um, yeah, I was the title of my chapter is laughing to keep from dying black Americans with diabetes in sitcoms and comedies. So I was looking at television shows as well as movies, and focusing on how those representations make meaning of diabetes within African American communities. Part of this started, when I thought about the first time I heard you have diabetes, and I was in the emergency room, my first thought was, I'm going to die. Like that. Was it? Like, I just thought like diabetes meant death? And when I started unpacking that, to find out where did I get that messaging from? Because no one in my family has diabetes. I didn't personally know anybody with diabetes. It really came from television and film, and of course, our media. And I thought it would be really nice to look at some of these classic movies and TV shows that are very popular in African American communities to see what story is told when you focus on the diabetes characters.
Can you talk about some examples?
Yeah. So for example, like Soul Food is one of those classic staple in African American film, a memory just like the color purple is something that people cite quotes from all the time. But when you look at Soul Food, it really stems from Big Mama who has diabetes. We understand this because she burns her arm on a stove. And a couple of things later, she passes away, she has an amputation and then a stroke. And she's no longer with us. The Big Mama character also comes up in Tyler Perry's plays and his films in his television shows. And again, these are staple matriarch characters who have diabetes. Now Madea lives on because that's a part of, you know, Tyler Perry series, but she has diabetes Boondocks I look at and of course Blackish. So blackish, I would say is probably where we first see the the image turn, where we first see a character with diabetes, checking their blood sugar, and all the other stuff we don't. And so what that tells us is that diabetes is going to cause either a slow death or quick death, perhaps an amputation, if you're familiar with 30, Rock. Tracy has diabetes there. And he does this skit where he replaces his foot with a skate. And he's like I'm practicing for when I lose my foot to diabetes. And that is the thing, there was a diabetes diagnosis, and the next thing, he's already imagining himself with an amputation. So when we look
Stacey Simms 22:59
at something like this, what do we take from it now? I mean, we you can't go back and change those representations. What do you want us to kind of learn from them.
Dr. Phyllisa Deroze 23:08
But I would ideally like for the film industry, to change their portrayal of characters with diabetes, I mean, all characters, not just African American ones. But last year, there was the release of the Clark Sisters first ladies of gospel biopic on lifetime. The Clark Sisters are like a staple in African American culture. They were these gospel singers that were absolutely phenomenal. The Lifetime movie of them ended up being the highest rated Lifetime movie and four years. This comes out last year, the mother has diabetes. She is seen not taking her medication, not caring about her diabetes. And of course, there's all these tragedies that happen. And the thing is, when we don't see African Americans using CGM technology, insulin pump technology, we don't see checking blood sugar. What happens with those messages is that it becomes the common assumption. So when someone goes to the doctor, the doctor may think, Oh, well, black people don't check their blood sugar. And so then that begins to impact the individual prime example. I was in a setting once. And a woman said, Oh, I didn't think black people ate vegetables. What? Yes, yes, literally said this. And I was just so floored, but I thought, okay, she didn't think black people ate vegetables. And so I'm wondering like, what images you know, is she being fed? Right? Yeah. came from so the thing is, is we have to look at our television and our film, not just as sources of enjoyment for some people, but also as information that provides an understanding about certain people. So literally in all of the films and television shows that I look that there were probably two that showed the African American character with diabetes, actually living a rather fruitful life. Outside of that it was amputation and death. And so when someone is diagnosed with diabetes, like I was, and I didn't know anyone with diabetes, instantly, the first thing I thought about was death and dying. And that association that comes with it, when I hadn't seen people living well, with diabetes, I just want to say this. When I was first diagnosed, I went to Barnes and Nobles sat down in a bookstore with one of Patti LaBelle cookbooks, and I flipped to a page and she said, in this book, I had diabetes, but I wasn't going to let diabetes have in me, and I cried, right there in the Barnes and Noble, because that was the first time that I had ever seen or read or heard someone who looks like me diagnosed with diabetes, and they were determined to continue living their life. Like if you want to see that image, where do you go? Because our television and our films are not that place. And that's also the fertile ground for which black diabetic info on my website started and my blog, because I didn't know where to go for that. Like, I got it in Patti LaBelle cookbook, and I cry. But then where can I go to see it again? Yeah, didn't have an answer. Heather, I
Stacey Simms 26:53
want to come back to you and ask you something I saw you posted about on on Twitter. A couple of months ago, Pixar posted a teaser for their new movie turning red, which I think comes out in the spring. And there's like a split second shot of a kid wearing some kind of what looks like diabetes device. It's, you know, an insulin pump or a CGM. And they confirmed it. I actually talked to somebody behind the scenes at Pixar and fingers crossed, we'll have them on the show in a couple of weeks. But it is a diabetes. I'm so excited. But it is a diabetes device. But you were pretty adamant about one point, would you mind sharing that? And why? Sure.
Dr. Heather Walker 27:30
So when I saw that, you know, I came late to the show. Let me preface with that, right. Like, by the time I saw that trailer, the community was abuzz. Like they everyone was so excited. And what I saw was, Oh, my goodness, we see a character with type 1 diabetes. And as someone who is completing a chapter for a book of essays on representations of diabetes, you know, my antenna went up when I saw how the community was claiming that. And I just thought to myself, This is not a representation of type 1 diabetes, this is a representation of diabetes, because people with type two can and should have access to those devices as well. And so for the type one community to be exclusive, in this moment, in this grand opportunity for all of us to celebrate together, really sort of broke me down in a way, you know, I was like, Why? Why can't we just keep this open? Why can't we make this a win for everyone? Instead of saying, quote, unquote, type two people don't use these devices? And I think that the reason why it was like it was like a jab in my heart is I think that that claiming does something in society, right? It, it functions to show us that large groups of the diabetes are the type one community feel like, maybe type two diabetics aren't using that technology, because they're the ones who don't care. And they're the ones that the stereotype is about. And so that shows me that we have pockets in our type one community that buy into the stereotype just like the public does.
Stacey Simms 29:06
I'm looking at the description of the book in terms of the different mediums you use Twitter, to TV to film to theater to fiction, fan fiction.
Dr. Heather Walker 29:13
Yeah, we have a chapter, whatever author of your chapter covering a segment of fan fiction, and it's wonderful and actually, that author and she discloses in her chapter as well, so I'm not outing her. She also lives with diabetes herself. And I'm pretty sure she has a physical science PhD. So this genre and this discipline is new for her and she just like, Oh, she did such a great job having us understand how diabetes is being pulled into fanfiction. Alright, we
Stacey Simms 29:46
now should have set this up better if you're not familiar, and I'm going to do probably a terrible job of describing this. If you're not familiar. Fanfiction is stories, poems, pictures, it's fiction, written by people who are Fans have a genre or fans of a certain bunch of characters, and then they kind of make up their own stories using the established characters most of the time. So in other words, you love Harry Potter, you write yourself into Harry Potter or you write a different adventures that the characters might have had. And it's accessible to pretty much everybody. Is that how I feel about fanfiction? Yeah, I
Dr. Heather Walker 30:18
think it's kind of a, you know, once you get into it, you know where to look. You can probably Google it. And you know, I'm not even really in the world of fanfic, full disclosure and transparency. But I feel like I want to beat now that I've read, I've read that chapter. So
Stacey Simms 30:34
these are characters people are writing about that loop with diabetes, or they are the just bringing diabetes into exactly as it sounds. It sounds silly, as I'm saying it out loud. Like I'm explaining it. I'm trying to, you know, hit it over the head to the to find a point. But just to be clear,
Dr. Heather Walker 30:48
yes. So I think in the pieces that this author talks about in their chapter, it's situations where the characters themselves do not have diabetes, and the fanfic authors write them having diabetes. Oh, so they add that to their character.
Stacey Simms 31:04
You know what we were doing that a long time ago? Because I don't know if you know, Heather, and Phyllisa, but Bob, the builder definitely has diabetes, because why else? Would he have that big belt around his equipment? Because that's where his insulin. So anytime we saw somebody on screen with that, he was like, Oh, he's got diabetes. I didn't mean to interrupt Heather. But that clarifies it for me.
Dr. Heather Walker 31:23
Oh, yeah. That's a perfect example. Right is imagine that we had a fanfic author who loves Bob the Builder when they were a kid. And now they're writing the whole story about Bob, the builder and his diabetic life. It's wonderful. The book itself,
Stacey Simms 31:37
is this something that's accessible to people? And I asked that I mean, is it more of an academic book, tell me a little bit more about that.
Dr. Phyllisa Deroze 31:43
So one of the things that I like about the book is that it's assessable. For a large reading audience, if you are a casual reader, you can get through it, if you are an academic, you can get through it. So it's not laced with academic jargon. But again, we are using theoretical frameworks, but in a language that is accessible to everybody. So that's one I definitely enjoy about the collection, is there something in there forever?
Stacey Simms 32:13
And that's a great point, because I think we do get a little nervous about academic type books, Heather, right. I mean, it's, it can be a little scary and off putting it away.
Dr. Heather Walker 32:21
Yeah. And I'll just add, you know, we have, so we have several authors who are like myself, and Phyllisa, who are scholars and community members, which is very nice, and just like really brings it home. And so, you know, you kind of know, as a community member, that you're going to get authentic pieces by people who are living with this, in addition to having a couple of us who are scholars and committee members, we do have chapters from community members, from activists who don't have their hand in academia at all, and they're writing about their personal experiences. And, you know, they're still talking about representation in different media, but they're doing so from their lens existing in the community existing in the world with diabetes. And if nothing else, although I, I would also say what, you know, Melissa said was true, all of them are accessible, but especially those that are coming, you know, from the mouths of babes that are coming from our community members, who, who many people who do pick up the book already know,
Stacey Simms 33:20
before I let you go, let me let me pose this question to each of you in kind of a different way. And that would be you know, full. So you mentioned blackish, being a bit of a turning point, the show where people are shown, you know, a character shown checking blood sugar. I'm looking back over the last year and thinking of a more accurate depiction of diabetes, or at least type one with the Babysitter's Club on Netflix with we'll see with Pixar is turning red, but with Greenland, you know, written by someone who's married to Greenland, the movie Written by someone who is married to a person with type one, do you think things are getting better? And and I would ask you, as well to include the black community, because we don't talk about that enough. You know, I mean, I'm trying to think if all of those I mentioned they did not feature people of color. Do you think it's getting better? I mean, what would you like to
Dr. Phyllisa Deroze 34:06
see, I would like to see more diversity as we get better in the American film industry. When I look at all the films that I studied, type 1 diabetes is grossly under represented like none of these characters have type 1 diabetes, which again, if you think about myself, 31 years old, being diagnosed, I never knew type 1 diabetes could be an option. I'm still not seeing African American characters using technology wearing CGM. Often when I'm out in public. People are asking me about my devices. It's the first time you're seeing them. I'm explaining insulin pumps. And so while things are getting better, I would say within shows, television shows and films that are popular within African American characters. Progress is about Very slow on that. And
Stacey Simms 35:01
Heather, from where you stand. Could you share a little bit about what you think is going on in media? Are we getting better?
Dr. Heather Walker 35:07
Yeah, I think Phyllisa what you're speaking to right is incremental ism. It's like we are getting better slowly, like painfully, slowly, bit by bit. I mean, I'm inclined to say yes, only because the number of representations that we're seeing are increasing. But, you know, I'm hesitant at the same time to say yes, because we still have to ask, okay, if we even if we have more representation, are they representations that are doing good for diabetic people in society? Right, like, not necessarily, Are they accurate? Or are they you know, a direct portrayal of what people experience? But what is the public taking away from that representation? Like, what are they leaving that with? And if we have a lot more characters all of a sudden who have diabetes, but the audience still thinks, Okay, well, diabetes is still what I thought it was, right? It's like overweight people over eating, making bad choices not exercising? If that's what they're leaving with, then the answer, of course, is no, we're not making progress, even if we're having more characters. And what I find is, what I think we would need to make really big change would be to centralize a character with diabetes instead of making them a sub character, right? Yeah, like for the baby sitters club. And Stacey is not a new character with diabetes is has old, right, like we've known that Stacey has had diabetes for a long time, it just wasn't being produced at the quality it's being produced at. So that's not really even a new one. But we do have new ones, like there's a just a year and a half ago, or so there was a new series called Sweet magnolias. And one of the characters there has, or is about to be diagnosed with diabetes, and it's the same, it's the same story. It's like, you know, if you don't fix your habits, you're gonna get diabetes, and you're gonna die like your mom and all these fear tactics. And so and I really want to be hopeful, Stacy, I really want to be hopeful and say, Yes, we're headed in the right direction. But I just don't know i We need people in the writers room with diabetes, and other health conditions and disabilities, to have a direct voice and call things out before they're produced.
Dr. Phyllisa Deroze 37:19
I agree 100%, we have to be in the room. Because some things they don't make sense. For example, blackish, you do see him check his blood sugar. However, once he puts the strip in the meter, he starts talking to his wife, and anyone who knows how to use a meter knows that you have about 30 seconds before you have to put a drop of blood on that thing, or else you've lost it. So even little things like that.
Stacey Simms 37:46
I had indicated that was the last question, but I got one more. And that would be and II feel free. Either one of you jump in? Or both? What can the community do? You know, sometimes I feel like, you know, I stopped correcting people online a lot of the time unless it's really egregious, you know, but if they make a joke, or there's a hashtag diabetes with dessert, or things like that, like I'm tired, you know, and then you have no sense of humor, you know, gosh, what can we do to try to fix this? Or what can we do to to improve the situation?
Dr. Phyllisa Deroze 38:15
I think, this research, this book, this podcast, these conversations are so important. So for example, prior to writing my book chapter, I didn't see anything talking about the representation of African American characters in television and film. Whenever I talked about diabetes characters, there was maybe the one mention of soul food, but like, there was a dearth there. So this book chapter hopefully helped spark the conversation in wider circles. And so by talking about it more, and rallying around these things, hopefully, the attention like first recognizing that there is a problem, and then getting think tanks together to talk about them is probably the best plan of action.
Dr. Heather Walker 39:06
I love that. And I would just add, you know, I think what the community needs to prioritize is inclusion, right? Like, we need to give up on being exclusive, especially in the type one community, and we need to open our doors to people with type two people with Ladda. People with all like, there are so many different types of diabetes, that even saying type one and two is, is exclusive. I really believe that if we can do that, and if we can elevate the voices of people with diabetes of all types, who are also people of color, then we'll make a lot of progress in our community because we'll start seeing those perspectives that we've been missing that make us as a community really limited to our own perspective. To me, that's the only way to do it. I love the idea of a think tank Phyllisa I think that's brilliant, and just absolutely, and I'm sure you would agree needs to be diverse, right? Like it can't Be a bunch of like, white people. I don't know. There's a lot we can do. There's a lot.
Stacey Simms 40:08
Thank you both so much for joining me. This is amazing. I'm so thrilled to have you both on the show, you've got to come back on there. We just kind of scratched the surface here. So thank you for spending so much time with me.
Dr. Phyllisa Deroze 40:18
It's a pleasure. Thank you for having me.
Dr. Heather Walker 40:21
Yeah, this has been so fun.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 40:34
More information about my guests and about the book on diabetes all at diabetes connections.com. As you know, every episode has its own homepage with transcriptions and show notes and all that good stuff. The transcription started in January of 2020. And we're working our way back here in there, hopefully filling in all the blanks. But right now, not every episode before 2020 has a transcription.
And I should tell you just I don't want to get ahead of myself here. That Pixar movie that we talked about turning red. Since our conversation, they put out another trailer and it showed more diabetes gear, another child in the movie is wearing a Dexcom. So it looks to me I mean, really can't tell yet. But it looks to me like one kiddo has some kind of pump. And another kiddo has a Dexcom. So as I said, I had a contact at Pixar. And I've got another one now. And it looks like there might be an actor, a voice actor in the movie who has diabetes. So we're to sort this all out. And I should be able to have somebody on about this. I don't want to over promise. But the folks at Pixar have been really receptive. So that looks like they won't do it too far in advance because the movie comes out in March. So as we get closer, I'll keep you posted for it.
And I had mentioned a story before the interview about not necessarily diabetes in media, but about jokes. And I don't know about you, but years ago, I was on high alert for diabetes jokes, you know, I can't eat that, or the the hashtag of my dessert is diabetes. And I don't know, I got burned out. And I don't talk about it as much. I don't police it as much, certainly, but I couldn't help myself last week, at Christmas, I'm in a group. It's a very clever group. It's called fatten the curve. If you want to join it. It's a public group, a friend of mine in the Charlotte area started at the very beginning of COVID. Obviously, it's a play on flatten the curve. And as you would expect fatten the curve is all about food. And it's just become a place where people who cook and eat like to share their photos. And somebody posted around Christmas time, you know, it's my diabetic coma, and then all of this food. So I kind of did the do I want to go to I want to do this, or I want to get this person's face. So I just very nicely said, Hey, diabetes jokes are never cool. Not sure if you thought about that. But hey, the food looks absolutely delicious. You know, hope it was as good as it looked or something nice like that very casual and breezy. Just like Hey, dude, not cool. But moving on. And there's a couple of other people in the diabetes community who have joined that group, but it's not diabetes, it's just food. But you know how it is when when Facebook shows you something people, you know, jump in. So other people commented like, yeah, Stacey's right? Please think twice. And this guy apparently lives with type two posted like a non sequitur about his scientific studies and stem cells and all this stuff about diabetes. He did, obviously, not really sunk in I don't think, but he didn't respond negatively. And I just said, You know what, fine, I'm moving on, right?
But then a couple of days later, somebody else popped in, it was like, nobody can make a joke anymore. You're too sensitive, and why we're just too easily offended. And that's when I was like, Alright, now I need to respond. So I very nicely, I think it was nice. You know, I wrote a response. And I said, Hey, you know, once the guy said he had diabetes, you'll notice I didn't clap back, I didn't get nasty. We are all entitled to say whatever we want. But it's important to understand that what we say does have meaning and impact. And as you listen, I know, you know, all this, I did the standard. When we joke about diabetes, we don't do this with other conditions. We don't talk about a cholesterol coma, or a high blood pressure problem when we're eating big meals like this. Why is it only diabetes? And did you realize that actually, you know, the blame and shame that can be encountered here prevents people from seeking treatment or makes them feel like it's all their fault, and nothing they do will matter. I posted all that waiting for the response. There was none, which I'm really glad about. Because I don't want to argue I just it's exhausting. But everyone's not something like that pushes my buttons and I have to save something. Hopefully that group will just go back to posting yummy pictures of food because it's been two years and we haven't had any issues like that. I mostly post pictures of what my husband cooks. Because I don't like to cook and what I do cook isn't really Facebook, really.
So I guess we're often running for 2022. We are back to the Wednesday in the news episodes. I hope you'll join me for that either live on Facebook, YouTube or Instagram, or as an audio podcast which comes out on Fridays. Thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here soon, in a Couple of days until then, be kind to yourself
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
There's a new documentary in the works, all about the struggle of insulin access and affordability. Rachael Dyer and Scott Ruderman, who lives with type 1, join Stacey to talk about their experience making this film and why they think it could make a difference.
Pay or Die Film provides an inside look at how the soaring price of insulin in America is threatening—and even taking—the lives of people with type 1 diabetes.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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Episode Transcription coming soon!
Stacey Simms 0:00
Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, a new documentary in the works to show people outside the diabetes community the struggle of insulin access and affordability. Rachael Dyer and Scott Ruderman had an experience in Canada that made them say, we got to do this,
Rachael Dyer 0:42
where he was paying at home in America up to $450 a vial out of pocket then to have the same vial same manufacturer same everything brought to him for $21 in Canada and to watch Scott just break down and start crying there in the pharmacy and for myself as well. I was left in shock and disbelief, and we just looked at each other as we walked out and said it's time now to make this documentary.
Stacey Simms 1:11
We'll talk to Rachael and Scott who lives with type one about their experience making this film and why they think it could make a difference. 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 insulin access and affordability as you heard is what this week's episode is all about. I'm your host Stacey Simms. My son Benny was diagnosed with type one right before he turned to almost 15 years ago. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting. And that is how you get the podcast
In our most recent in the news episode. And that's the previous podcast episode two this one, I explained Lily's new move to drop the price of insulin lispro. Between that and Walmart's deal with Novo Nordisk, which lets Walmart price Novolog, same exact Insulet Novolog. a lot lower. We're seeing some interesting action on the cash price of insulin at the pharmacy. As I've said for years, though, I think it's going to take state and federal legislation to see real systemic change, you still need to jump through a lot of hoops, you still need to know that this is out there, you still need to find coupons in many cases, or you need to, you know, have really good insurance. There's a lot going on, and my guests this week are hoping that their documentary film will help educate people and make a difference. That film is currently in production. It is called Pay or Die. Here's a clip from the teaser,
Trailer here: https://payordiefilm.com/film-teaser
Stacey Simms 3:17
If that last bit sounds familiar, that's Nicole Holt Smith, who I've had on the show her son Alec died after rationing insulin, and that audio is from her arrest at a protest at Eli Lilly headquarters in 2019. Today, you're going to hear from the filmmaker Scott Ruderman and Rachael Dyer. Scott was diagnosed with type one in 2009. He is an award-winning filmmaker. He's worked on documentaries for Netflix and Hulu in the BBC and HBO, his documentary short piano craftman won Best Director at the Madrid art film festival.
He has a long list of credits, as does my other guest Rachael Dyer. She is an award winning journalist and producer who won a Southern California journalist Award for Best International feature, as well as a Clio entertainment grand winning entry for her work on the greatest showmen live the world's first live commercial for theatrical release
the story behind Pay or Die in just a moment but first Diabetes Connections is brought to you by Dario Health bottom line you need a plan of action with diabetes. We've been really lucky that Benny’s endo has helped us with that and that he understands the plan has to change as Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. They're published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one c within three months and a 58% decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my dario.com forward slash diabetes dash connections for more proven results and free information about the plan.
Scott and Rachael, thank you so much for joining me. I appreciate you spending some time with me and my listeners today.
Rachael Dyer 5:14
Thank you so much for having us. Stacey. We're really great, great time and looking forward to being here.
Stacey Simms 5:19
Let me start if I could with you, Scott, could you live with type one? Just briefly, could you tell us your diagnosis story, you were diagnosed as and as an adult? That's correct.
Scott Ruderman 5:29
I was in college, and it was around 2009. And it was my first semester in college I was I was going to Suffolk University in Boston, Massachusetts. And for about two weeks, I really wasn't feeling good. had all the symptoms, I say got very blurry, drinking a lot of fluids. I woke up one morning, and I just couldn't feel my legs from my waist down. It felt like they were being bags, I went to the school infirmary. And they they told me it sounds like type 1 diabetes are just diabetes. But they weren't. You know, they said it's probably not. But when they actually took a glucose reading, they left the room, the nurse came back in and she said, Look, I thought the meter was broken. But I checked my blood sugar and it's fine. Your blood sugar is not, it's not reading on the meter. So it's definitely going to be high, we want to send you an emergency room. So I went to Mass General, and I checked in and I was there for about a week. And then I resumed classes the week after it was it was a really hard week. But it was just one of those things. And I think a lot of type ones could relate that you just have to accept it. And the learning curve is it took a few years to really get on top of it. And then as the newer technology came in, it just got easier to manage.
Stacey Simms 6:42
So what led you all to this documentary? I assume it didn't happen as soon as you were diagnosed, Scott, but can you tell us a little bit about kind of what led you down this path, of course.
Rachael Dyer 6:53
So this has been a passion project for Scott for some time. And Scott and I actually met working together in the field. So obviously, we're both in the documentary business. And we just finished up working on a documentary together. And then I have a journalistic background. And I had done quite a few stories where I was looking at a lot of Americans traveling to Canada to get alternative medicine up there and their prescription medicine out there because it was a lot cheaper. I hadn't ever focused on insulin, but I had done other stories. So when Scott and I had met in the field and started speaking, Scott had told me that he was a type one diabetic, which I knew nothing about at the time, I knew very, very little about diabetes in general, let alone type one. And I was traveling to Canada because I'm Australian and half Canadian, and I was visiting my family. And I asked God to come with me. And I told him that I done some of these stories about, you know, Americans traveling up there. And Scott didn't believe me at first. And I thought that it was crazy what I was talking about. But we went, we went to Vancouver and we said, Look, I said why don't we just try. Let's see how we go. So he went to a few pharmacies and there and then the pharmacists were great. And we explained our situation, you know, Scott had shown brought in the insulin that he was on. And they, you know, were so generous and welcoming and kind and said to him, Look, what insulin Do you need right now for this trip? What can I help you with? And as Scott likes to explain it, he says it was like he was a kid in a candy shop, just to have that overwhelming experience with insulin that was so inaccessible, and so expensive in America to come forward and have it brought to him where he was paying at home in America up to $450 a vial out of pocket than to have the same same vial, same manufacturer, same everything brought to him for $21 in Canada, and to watch scotches break down and start crying there in the pharmacy. And for myself as well was I was left in shock and disbelief. And we just looked at each other as we walked out and said, It's time now to make this documentary. We have to do something about it. So that led us on our journey.
Scott Ruderman 9:19
I have to stay Stacy, to Rachel's point, it was a very emotional experience. It was one of those experiences where you feel joy but kind of frustration and at the same time I think I say this all the time. I really looked at my hands and for the first time I said Well, I'm feeling a little bit more accepted and cared for and thought out for then my experiences going to a pharmacy in the United States where I need more insulin and my prescription. You know, it's not it's not fully made out for the month yet and they're kind of like no, you have to come back next Tuesday and I can walk out of there and they know I could potentially die without my Insulet So it was just quite an experience. And to Rachel's point again, yes, we both said we're making a film about this.
Stacey Simms 10:07
So it seems to me that just from what you've said, it looks like it changed a bit though from Why can't we get more affordable insulin in the US? Why can't you like you can in so many other countries walk in and buy what you need to people are dying? And I'm curious, did you realize that as you started this project, or was that always part of the story all along?
Scott Ruderman 10:27
For me, when I was doing the initial research, you know, when I realized, the first thing I said, in my head, I wonder what people are doing that can't afford it, and where they're going, and upon my initial research, you know, obviously, people that can't afford to go on Facebook, you know, the clinical black market and media. But then I started reading all these stories about people rationing their insulin, and going into decay and dying just to make ends meet. And that's where things got a little bit more serious. And like, Whoa, this is not just being able to afford it, people are actually losing their life because they can't afford it. And that's kind of where the film kind of took it. It's kind of approach was that this is an issue and people are dying.
Stacey Simms 11:09
Rachel, what do you think the film is for? You know, it's very difficult, as you probably know, and as you live with type one, Scott, it's difficult to explain any of this to people who don't live with it day in and day out. I'm curious who you're producing this for, of course, and
Rachael Dyer 11:26
I think, you know, with anything, that is a huge challenge with trying to firstly explain an illness, which a lot of people do not live with. And also to, to differentiate between type one and type two, that is obviously a challenge in the beginning. But you know, there are huge differences. And there are huge differences, which we do point out in the film. Obviously, as you know, with your son living with type one as well, it is a life threatening illness, and you are insulin dependent. So you know, we explore that, but also to exploring the medical system in America, which, as anyone who lives here can understand that it is very complicated, which they love for it to be to make everyone think that this is something that we just have to live with. But for me, being an Australian and Canadian, I think, the shock factor from an international audience and not having to not only live with a debilitating illness, but also to then navigate this healthcare system is what we're trying to present throughout the film as well and show the microcosm of this healthcare system in the United States. So I would say that this film is being produced not only for the type one community or the diabetes community, but for not only also to a domestic and international audience to show what is going on in the states and how unjust it is, and how unfair it is for people just to not be able to access life saving medication and medication that in a lot of other countries around the world is affordable and accessible, and you shouldn't be dying because of it. So it's for everyone.
Stacey Simms 13:11
I'm curious, too. It's so hard to get this message to be clear, because our healthcare system is so complicated to the point where you can go on social media any day and see people within the diabetes community arguing about whether or not people can afford insulin. In other words, you know, if you start any kind of Twitter chain or Facebook conversation, you'll have everything from you know, mine's covered. 100%. I don't understand what your problem is to why don't we just get a coupon to the president lowered the price of insulin? No, the president raised the price of insulin. It's so confusing at Scott, did you focus on any of that conversation? Or is this more focusing on individual stories?
Right back to Scott answering that question, but first, Diabetes Connections is brought to you by Gvoke Hypopen and you know, low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out. There are a lot of symptoms that can be different for everybody. I am so glad we have a different option to treat very low blood sugar Gvoke Hypopen is the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle before gvoke. People needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand to find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit g vo glucagon.com slash risk.
Now back to Scott answering my question about whether the film looks at the bigger system or focuses on individual stories.
Scott Ruderman 14:56
That's a great question. This is a question that's brought up a lot as well. Let's just within our team, you know, this film is really, through, you know, the stories of people that are struggling. And we're capturing those human stories and seeing kind of the lengths, they are going to try to get access to the medication they need financially. And through their stories, we will kind of go into a little bit about the complex system, as well as politically what's happening. But the idea of the film is, this is a very character driven film. And we want people to be able to familiarize themselves with these characters and be able to, you know, say, well, that could be me, or that could be my friend's daughter who has type one or, you know, not even just type 1 diabetes. I mean, there's other medications that are so expensive, that anyone can kind of put themselves in those shoes and be like, what do I do if I can't afford medication. And that's really the shock factor we want to bring through in the film and urgency, because we can go on and on and on and talking about the complexities. But the problem is, it's never going to be solved, unless you're faced with the realities of it yourself. So bringing that to the viewer of making them feel like they are in the position of what our characters are going through is the goal to show the reality of the struggle
Rachael Dyer 16:16
to Scott's point that is very much the focus of the film, but we do have experts that we are speaking with that, breaking down the complexities behind it and showing how the system works. And with the experts that we have, they do actually show that the complicated system is being put there for a reason to make people feel like it is more complicated than what it actually is to make it so confusing that people just throw up their hands and say, I can't be bothered, this is just the way it is, which is certainly not the case. And it doesn't need to be the case. So you know, we do have the experts that have come in to break down that process and make it as simple as possible so people can understand this is not the way that it needs to be. Yeah,
Stacey Simms 17:03
that's great. Scott, what conclusion do you come from after this? I mean, I agree with Rachel, it's complicated, because it's designed that way. I do think the government will eventually get involved. We're seeing states now start making some changes. I'm not sure the federal government will ever take action. But you know, is it going to be a change in list price? Are we going to need to get rid of pbms? You know, did you draw any conclusions from this?
Scott Ruderman 17:28
You know, I think one of the the challenging things is the barriers of entry for just anyone trying to make a change with what's happening. And part of making this film is to kind of shine light on how complicated this system is. And no, this is this film gonna be the ultimate change? No, but it's trying to make the world a better place and down the road, do I think Insulet will be free? No. But I think just recently in the media over the last few years, this issue has been hot. And I think people are catching on and people are realizing that there needs to be more, you know, regulation on this. And prices need to be more affordable. I mean, think about when insulin, the discovery of insulin and Frederick Banting. I mean, the whole reason he sold it for $1 was so no one can make a profit of this. And I think looking at where we are today, I mean, discovery, insulin was a breakthrough discovery for the United States of America. And it's been celebrated. But if people can't afford it, and they're dying, because of it, that's going against the whole idea of making it affordable with bandings purpose to selling it. Hopefully, this is just a wake up call to say, hey, insulin was to to help people not to make profit off.
Stacey Simms 18:46
And I before Rachel jumps in, because I know she's half Canadian. Dr. Banting was Canadian, so we have to give the props. I know, I know, you meant you know, the manufacturer in the United States, and really purchasing getting all of that. But tell us a little bit if you could Scott about maybe some of the you said characters tell us a little bit about the people in this piece,
Scott Ruderman 19:05
of course. So you know, we have some principal characters, we've been following Nicole Holt Smith, who lost her son Alec, he was rushing his insulin, he couldn't afford, you know, the monthly cost. And he, he went into decay and died. And she's been fighting on the Minnesota State level to try to get access to emergency insulin in Minnesota. And we've been following her kind of battle on the state level. So that's one of our main stories. Another story. We've been following a mother and daughter who've been living out of their car because they need to make ends meet and you know, they're both type one, and they couldn't afford their insulin. So unfortunately, they were living in their car trying to survive, and they're the ones that crossed the border to find cheaper insulin in Canada. So we followed that story. And then we also have another story of a newly died This is during COVID. And the reason we brought that story in is we needed to, we want to cover all angles, we don't want all our characters to be this repetition of, I can't afford insulin, it's they're all struggling in different ways. And our COVID story of being diagnosed on COVID is, is to show the reality of what it's like and how your life just flips with type 1 diabetes, the management side, the physical side, and then again, the financial side. So it's all those aspects are in that story.
Rachael Dyer 20:29
Yeah. So just to Scott's point, I think that what we're trying to capture with all of our contributors and following their stories is it is just that it is a financial, emotional and physical burdens that, you know, everyone who is diagnosed with Type One Diabetes goes through on a daily basis. And I think that is the main emphasis that we really focus on throughout the film. And you see it through the stories, you see it through the emotional, physical and financial burden that they go through. And I think where Scott and I work well at both together, but our style as documentary filmmakers, is we are a very small footprint on the ground, a lot of the time, it is just Scott Nye traveling together. So we have a very personal relationship with the people that we film with, and they open up their world and they let us in and we become very familiar with who they are. And you see the heartbreak, you see the tears, you see the joy, and hopefully that is what is going to come across on film and and in the stories and if anyone has a daughter has a mother has a son has a child that is struggling in any capacity, whether it's with type one or something else, I feel as though that they're going to be able to relate. And that's the purpose behind these special stories that we're bringing to the screen.
Stacey Simms 21:58
Scott did anything surprise you, as you talk to these folks, when you live with type one yourself, I'm curious if anything that they said or anything they shared, took you by surprise,
Scott Ruderman 22:07
not only surprised, but as we kept going back into the fields, and filming, I think, you know, realizing that I am a type one and that this could happen to any day just kind of drop the reality perspective back to me. And I'm feeling what they're saying. Because, again, this I could be in this position. as a freelancer alone, covering my own health insurance, a bad month puts me in a bind. I'm actually the subject of my film in a way. So it's a very interesting connection. And it takes a toll on me. Every time I go and film, I need space after to just process what I'm hearing and what I'm going through, I think filming with Nicole Smith hope of being a mother of, you know, losing her son, I think my mom like what my mom would go through. If I were to pass away because of this and following Nicole. And you know, that's where you kind of see a real mother's purpose of just she's not going to stop being Alex's mother. By doing that she's going to continue to try to make an example that this is not okay, and be a voice for all the mothers out there that do have children diagnosed with type one and could be struggling because when you turn 26 years old, and you're off your parents health insurance as a type one, it's a new learning curve. It's a financial learning curve. And it could be very difficult. It could mean the job you get where you apply. It's not what you want to do in life. It's what can I do, that's going to keep me alive so I can afford, you know, for my insulin to keep me alive. It's a very scary and Nicole always says it's that number 26. And I'm only 31 years old, and I was 26. I remember that moment. It's really hard.
Stacey Simms 23:58
Before I let you go, unless each of you this question, why do you work in documentary? This is a it's such a different type of filmmaking. It's so personal. As you said, Scott, you kind of have to recover if every time you talk to somebody, why do you do it?
Rachael Dyer 24:12
I'll jump in. I think for me, as I mentioned earlier, my experience and background was as a journalist for over 10 years and you know, I dealt with some really challenging and and hard hitting stories. For the my first four years in America, I was traveling the country and working in breaking news. And for me, with the 24 hour news cycle that has just become so relentless, my personality is one of which I just had to stop being on the ground for less than 24 hours and seeing these people let's hop right and wanting to share their story more and so naturally, I just transitioned over to wanting to be in the documentary space to spend money. more time with individuals learn about who they are and share these really important stories on the world stage. Rather than just jumping in and out for a one and a half minute nice cars. Yeah, for me, it was just important to be there with the people, and spend the time sharing these really relevant stories.
Scott Ruderman 25:19
For me. I love storytelling, I think one of the greatest things about documentary is to every project, you're in a different world, you are discovering the lives of people and what they're going through, and to be able to film that and see transformation and see someone change along the way along the process is extraordinary. For me, it's also extremely challenging. And being in a room with a camera and filming people at on the moment. It's in this sense, you know, I like to say in fiction film, you know, the director is God. But when it comes to documentary and nonfiction, God is the director, and you don't know what's going to happen in front of your lens, and to be there and capture a moment that could only happen once and walk away with that and be part of that is what keeps me coming back to make more documentaries.
Stacey Simms 26:11
And in general, and maybe just for this one, too. I'm always curious, how much more do you film than you use? Right? I mean, it's got to be hours and hours and hours that you're filming that you're not going to use?
Rachael Dyer 26:24
Yeah, I think that's always the fun part. The fun part for us, but definitely not the fun part for the editor when they have hours, and hours and hours of footage to go through. But yeah, like Scott said, I think that the difference between documentary and true documentary is that you do not know a lot of the time what is going to happen, you can only prepare so much. But there is a lot that is unpredictable and doesn't happen and you you know, you want to film that you want to see the change and evolutions in these people. So again, I think it depends on the documentary, the subject matter, but and also to where you initially thought the film might go might not be how it ends up in the Edit. So we're not at that stage yet. So I think we will see but you know, there is a lot that we have filmed but a lot of special moments to within that.
Scott Ruderman 27:22
Yeah, another challenging thing about making a documentary. And you know, I just also want to point out there this documentary, until we started actually securing funds was funded out of pocket by me. And one of the hardest things is, you know, we have characters across the nation, West Coast, mid coast, and one of the hardest things is always being there at the right moment. And you know, being able to jump on a plane with all the gear get there and be there in time to capture it. That's a huge cost factor. And you know, that's a decision you have to make. That's one of the challenges about document and you're not with people, you know, we've been filming this for a few years now we're not with our characters fully on for years. It's it's coming back and going. And there are moments where it's exhausting for subjects because we're there and we have to take a break. And then we come back and you know, new development occurs. And that's the beauty of it is following and following and following it seeing that transformation.
Stacey Simms 28:17
Well, Scott and Rachael, we really look forward to the completion of this and seeing it and spreading the word. Thank you so much for joining me and sharing your story and we look forward to the release of the movie. Thanks. Thank you watch.
You're listening to Diabetes Connections with Stacey Simms. More information at Diabetes connections.com. I will link up the website to Pay or Die and any other information about the timing production, that sort of thing. Of course, there's a transcription along with this episode as there is with every episode since the beginning of 2020.
Just a real quick note about our experience with insulin and coupons. And I've shared this story before and it's been about a year now I realize that we decided we had changed insurance right around this time last year, and they wanted to change us from human log to novolog. But he's been doing great. I did not want to make any changes. I mean, you know how it is when things are going well. So we decided we had a little bit of a stockpile, Lino, let's fight it. And it took me a full two weeks of spending a lot of time calling the pharmacy calling my doctor we got some coupons I went to get insulin.org and went through that process and you know, immediately printed out a coupon for human log and said this will be $35 a month. It was not that easy. I took it to the pharmacy and they said nope, it doesn't scan so we had to jump through a lot of hoops. What happened for us was we got a new prior authorization from Benny's endocrinologist and the pharmacy ranted as a new prescription. So that helped us and you know what, I'm afraid knock on wood is word As I'm looking around here, we have not had to do anything else it renewed automatically for 2021. And so far so good. I'll keep you posted. if anything changes, it was a lot of hoops to jump through. I'm grateful I had the time and the knowledge to do so I know not everybody can spend that much time and has that good of a relationship with both their pharmacist and their endo. What a mess.
Alright, more to come. But first I want to tell you about another one of our sponsors Diabetes Connections is brought to you by Dexcom. You I want to talk about control IQ. This is the Dexcom G6 Tandem pump software program. And when it comes to Benny, even though I hardly expect perfection, I really do I just want him happy and healthy. I have to say control IQ the software from Dexcom. And Tandem has exceeded my expectations, Benny is able to do less checking and bolusing. And spending more time in range is a once these are the lowest they have ever been. This isn't a teenager at the time when I was really prepared for him to be struggling. And everybody’s sleep is better to with basal adjustments possible every five minutes, the system is working hard to keep him in range. And that means we hear far fewer Dexcom alerts, rural sleeping better. I'm so grateful for this, of course individual results may vary. To learn more, just go to Diabetes connections.com and click on the Dexcom logo.
If you're listening to this episode as a first airs, it's the first episode of October of 2021. It's also the beginning of a stretch of really, really busy weeks for me, I am hoping to have an episode every week this month. But please follow me on social it is possible, especially two weeks from now, that's kind of iffy, but I'll see what I can do. I am traveling to New York this coming weekend, I was supposed to go to friends for life White Plains, that is now a virtual event that's going to happen in November. But I'm still going because I have family up there. And I have some plans. So I'm really excited. And then the phone week I'm going to shoot podcasts live, which is a female podcasting event that I've been working on. I'm working with them to help with that event. So I'm really excited about that. And then later in the month, my husband and I are going to go away to celebrate a big birthday of mine. And in between I'm trying to make room for lots of just fun local stuff where I am because yeah, I mean, I don't usually celebrate my birthday all month long. But hey, I'm turning 50 I gotta tell you, I mean, are you Is anybody excited about turning 50? I'm not thrilled right about getting older. But man, I'm thrilled about getting older. I really have mixed feelings about this, because it is a milestone. So I'll be sharing more maybe on social media, we'll see.
But I do have a couple of fun announcements coming up. They will be mostly in the Facebook group, or at least they'll be first in the Facebook group. So if you're not in Diabetes Connections, the group please make sure to jump in there. end of October, maybe mid to late October. I've got a couple of announcements. I need your help with some upcoming projects. It's going to be a lot of fun. All right, thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I will be back with in the news that's gonna happen every Wednesday at 430. Even as I'm on the road, I've done it before. I don't mind doing it again, from my friend's homes, my sister's house or from hotel rooms. I like doing those in the news episodes live. So those will continue. I'll see you back here in just a couple of days. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
When they're out of options, people who use insulin are turning to Go Fund Me accounts and other online crowd-sourcing ways of raising funds. Mutual Aid Diabetes (MAD) is a new organization that hopes to help. Their mission is "to ensure every member of the diabetes community has access to adequate diabetes supplies, medications, sustainability resources via facilitated peer support."
This week Stacey spoke to Emily Miller, part of the leadership team at MAD to learn more.
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This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:11
Welcome to a bonus episode of Diabetes Connections, where we aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. I'm your host, Stacey Simms, my son was diagnosed with type one more than 14 years ago, just before he turned two. My husband lives with type two diabetes. I don't have any kind of diabetes, but I have a background in broadcasting. And that is how you get the podcast.
Today we're going to talk about something that is relatively new in the community trying to provide help for an all too common problem, lack of resources and supplies. It's called Mutual Aid Diabetes. I noticed this on Twitter late last year, I wanted to learn more about it. So I reached out. And Emily Miller, who is part of the leadership team at Mutual Aid Diabetes was kind enough to come on. Emily, I really appreciate you coming on and talking about this. Thanks for being here.
Emily Miller 1:01
Thanks for having me. I'm really excited to just kind of be able to share our story. Got it.
Stacey Simms 1:05
Before we talk about MAD or mutual aid diabetes. Can I ask a couple questions about you? You live with diabetes?
Emily Miller 1:14
Absolutely. I currently have type one diabetes. I was diagnosed when I was nine years old. And my dad actually was diagnosed with Type One Diabetes as well when he was about 19. So before I even had diabetes, it was like something that I even knew about, but I was diagnosed a little bit later in my childhood. And I have had it for going on about 19 years now. So I have to keep track via dates. But usually I don't think about it too hard. But yeah, about 19 years almost coming up in March.
Stacey Simms 1:45
How did you get involved with mutual aid diabetes? Were you part of the formation of it? Or did you get involved after it had already been around before I spotted it on Twitter?
Yeah. So I kind of came in, right before we had our like, first info session. Basically, during the pandemic, I had noticed a lot on Twitter and Instagram and like lots of different circles, basically, where mutual aid was popping up in different communities. So I live in West Philadelphia, you know, like Will Smith, all that kind of fun.
We all just sang it. (laughs)
(laughs) It's no, it happens all the time. So I'm based in West Philadelphia. And there's a lot of mutual aid initiatives around here in terms of community fridges giving back in terms of financial mutual aid. And I love mutual aid, just because from the standpoint of asking a community what they need, and they give that answer back. And we're not turning it really into anything that's like part of the nonprofit industrial complex, or into charity or anything like that. So it's really a community meeting its own need. And as the pandemic really has gone on, a lot of diabetics on Twitter, although I'm sure some people know about the DOC, or the diabetes online community already, you know, the DOC really kind of started connecting a lot more people. And we've been doing this before pre pandemic stuff. But it was really a way for people to communicate and build that community that we don't necessarily have in our own lives. So I don't know how if your son experienced this at all, but when I was first diagnosed, my like pediatrician linked me up with another diabetic but other than her, I really didn't know any other diabetics, I just like, knew my dad. And so online spaces like Twitter and Reddit, lots of places like that have allowed for diabetics to kind of come together, domestically, internationally, to talk about these different issues that we're all facing. And so much of that is insulin pricing. At one point I had mentioned to one of my, you know, diabetic friends on Twitter that was like, Is there a fun that we can all just like dump money into and redistribute it? Because it seems like diabetics are just like sending the same $100 around to each other to fund these different things.
Stacey Simms 4:06
I just want to jump in Emily and stop because there's so much that has already gone by that I want to ask you a little bit more about. And this podcast audience is interesting in that it's very well educated, it is a little bit more well off than the general population. I don't say this as anything, then the demographics that I've researched over the years, and it is very well connected, as well. But I'm not sure that everybody who listens even knows what mutual aid is. And you talked about that. You have that in West Philadelphia, but it's not official, right? I mean, it is what it says it's people just helping each other. Right. This isn't a group or nonprofit called mutual aid. I just want to be clear about that.
Yeah. So the way that most mutual aid initiatives work is really outside of the scope of nonprofit status, or being an official organization. Different people will kind Have link up to mutual aid. And sometimes it gets formalized. Sometimes it doesn't, though. But I think a really good example of mutual aid that a lot of people know about is the Black Panthers. So back during the Civil Rights Movement, you know, they were doing a lot of community breakfasts and supply share, like helping people get medical aid, things of that nature. And that was really born out of the community of seeing the government didn't help us. And so we're going to help ourselves. And so I think for folks who are interested in learning a little bit more about mutual aid, it's basically reciprocal sharing of resources. So if one person can jump in and help this other person, they're going to do it. And then that way, if I ever need help, you know, I've kind of been able to prove that I can help out in some forms, and maybe someone's going to help me. And it's really knowing that like, no one dies today, or nobody is going to not get the care they need in order to survive. Because we are here to fill this gap that systems have created, essentially, we're going to fulfill the need, that systems that already exist have not been able to fulfill.
Stacey Simms 6:09
Yeah, and there's so much of this already going on in and I'll bring it in might sound silly, but what I know is the moms groups on Facebook and local groups, I run a local group in Charlotte of 800. Its parents, but it is mostly moms. And there is a week that goes by that someone isn't getting them in the car, driving insets sensors, quite often insulin, I've done it myself many, many times to other families and individuals. And I would assume that that's kind of mutual aid, even though we don't call it that.
I mean, that is that's mutual aid. You know, someone says, I need help, someone jumps in and says, I got that I'm going to help facilitate this for you. And I mean, same thing here, we, I think a lot of us in the community have been able to step up during this time of great need, especially when diabetics are at a higher risk for losing insurance during the pandemic losing financial support. It's just a time when more people need help. And so those requests are becoming more visible. And so now we have to kind of scale up what we're doing in order to make sure that people are getting their needs met. And I think that's something at the end of the day that I always think about is like how are we helping people? And how are we meeting those needs? Yeah.
Stacey Simms 7:22
Alright. So going back to what you were talking about. You said, and I think you're absolutely right on this, it seems like we're passing around the same $100 trying to help people mutually diabetes has been linking up to us from what I see, you know, GoFundMe and trying to find ways to get help to people who may not like I can't jump in my car and drive insulin to everybody. Tell me about the financial part of this. How is that working?
Yeah, so currently, the big goal really, for mutual aid diabetes, is to get that 501c3. So we can open up a bank account and really be that place where people can just like I said, dump funds in, and then start sending that out to people, we're in the process of obtaining that status. So while we're kind of working on our like 2.0 launch, which is coming up soon, we've created these other resources for people. So like peer to peer sharing methods, but like you were saying boosting GoFundMe is, but I think the problem of like the political side of mutual aid being like outside of the systems of governance, versus how we can help people in a way that doesn't put undue financial strain, or like running financial monetary donations out of someone's Venmo account, they kind of don't really sit together. So that's something that we've talked a lot about as like an organization of how do we get these two competing ideas and these two things that can both be true, and make sure we're honoring our community in the best way possible, while navigating, you know, the systems of, you know, the IRS and the nonprofit side of things, while also being true to our community. So, so much of the finances right now is like, if someone comes up and they have a little bit more financial resources, they're making that active choice to send that to someone's Go Fund Me, or something of that nature.
Stacey Simms 9:14
I have to be honest, you Emily, I'm a little confused and pardon my denseness on this, but I'm, I'm trying to figure out what is the conflict here? Is it an actual nonprofit organization in conflict with the mutual aid essence?
Yeah, I think that's a good way of putting it. So it's really about the whole core status of like, and I guess maybe that's not like the best sentence of like this, like the essence, like you were saying. So it's this essence of, we don't want to build a system that already exists that we know has not met our needs before. So a really wonderful, one of my favorite authors, Audre Lorde, said like the Masters tools will never dismantle the Masters house. I think that's a really good way of putting it of like if we just read create this system of how we get supplies to people how we get financial aid to people, we create this kind of dependence on like the mutual aid network. And just because unfortunately, the cost of insulin, the cost of supplies, all these things are so expensive. We are just by nature dealing with a higher amount of money than some other mutual aid initiatives are. So sometimes it's like, I've seen it in my local community fridges where if you have an extra $100, you can just like go to the store and buy extra gallons of milk, and I put it in the community fridge.
But for diabetes supplies and insulin, it's so much more complicated, because you have prescriptions, you have doctors, you have insurance, you have benefits managers, you have the different companies that kind of run all this stuff. And so you come into all sorts of different ways of interacting with these systems. But if we don't want to emulate those systems by just becoming another pawn in it, and it's kind of trying to combat the idea of being a radical organization that's going to be able to support other people, but also not leaving anyone out. Because we've decided not to pursue c3 status, or a method through which we can't essentially like get funds in so we can then pay someone's copay off or someone's deductible things of that nature, it's just, it's a lot more thinking about the theory of it than I ever would have expected. But it's something where I feel really grateful to be able to bring that to the MAD team that at the end of the day, if we ever need to take a step back. And we need to think about like what we're going for, we have that kind of like theoretical and that like personal experience basis of it, where we can fall back on that, as opposed to just like, we have a bank account or something like that. So we were really trying to put the person at the center of it rather than the community. Rather than just like the organization.
Stacey Simms 12:02
It's so complicated, as you said, with diabetes, because we, like my local group is a great example, we will help each other because we kind of know each other, and we trust each other even if we don't know someone Personally, I've seen them in the group for a couple of years. I know their child has diabetes, right? I know that this guy who lives in next town over is in between insurance and need some pods or whatever, you know, so we get the stuff that they need. It's different somehow, when, you know, we know there is a need, but I don't know if I should donate to this guy's Go Fund Me. Of course, I don't know if I should donate to this other thing. But then there have been so many groups have tried in the past, or have had the idea in the past, I should say of, well, let's just fundraise. And then where do we give it it is so complicated, because of all the prescriptions and I'm just really echoing what you said. But I guess what I'm leading to is the question of, are you then this is a big ask. So I I'm not expecting a big Yes. But are you then trying to use mutual aid diabetes, to spread the word of what needs to change in terms of legislation and insulin pricing and all that stuff? You've already mentioned some politics?
Yeah, I think that's a great question. Because the existence of a group like Mutual Aid Diabetes by nature of just being a mutual aid group, it already shows that there's that gap in the system, like we were talking about. And so different people in the diabetes community, sometimes we call it like the diabetes, grassroots, essentially, you know, we know what skills we have. And so we can connect with each other, we can organize and we can talk about these different issues. Some people skill sets may just be better suited for mutual aid, some people might be a little bit better suited for like lobbying or things like that. But because we have these relationships to each other, that can inform how we use that information, to do things like lobbying, if we need to, or talking to elected officials, things of that nature. So it may not necessarily be like MAD’s wheelhouse, per se, to do some of that information. But just the fact that we exist as an organization brings awareness to that fact that the work that we do is because the way that insulin is priced in the way that supplies work is unsustainable for most people right now. And I think that's, it's a big, it's a big question of how do we link those things.
But I think it is really important to talk about how the existence of something like MAD or different organizations and different organizations like the JDRF, or the ADA, or beyond type one, all these different things, what are their purposes within the diabetes community, because some of those organizations like JDRF and ADA and beyond type one, they talk about wanting to help people with getting assistance or making insulin affordable or making the best choices for each person's life, but by taking like insulin money and partnering with Big Pharma kind of defeats some of that purpose. So we're really here to kind of take that stance of like, we don't do these things, we don't take money we are buying for the community, we're trying to be inclusive of the whole community, all of these kinds of principles that we took a lot of time to think about. And just make sure that we are taking a stance that it can be done. And that as we kind of move along, you're helping people that we can meet the needs of the people who are essentially forgotten a lot of the time.
And it breaks my heart that a lot of the time when we see these GoFundMe is, sometimes they have no money going to them, because people can't vet them. Whereas when I put up my GoFundMe literally a month ago to help crowd fund for health insurance costs, it got funded within six hours. And it's because I'm a vetted member of the community. But I take any of that surplus, I'm able to give that back to those people who have like $0 on their GoFundMe accounts, and I get DMS, from people all the time on Twitter of like, Hey, can you just boost this and it's the easiest thing to do. And by me boosting that, someone's able to get a little bit more visibility. And I think that's the great thing about Matt is that we have a little bit more visibility to bring that verification kind of in there. While also not being gatekeepers, we don't ask for proof of anything, but we do our best to make sure when we're meeting with people where we're trying to facilitate that need, we can talk to that person one on one and say like, what is the need here? How can we address this crisis? Are we doing crisis management? are we helping someone out to kind of feel more comfortable and asking for help these kinds of things. And the great thing about MAD, is that we just have so many wonderful people working in our community, you know, volunteers for MAD, a lot of them have so many different backgrounds, and so many different skills. So we have folks like medical social workers, people who work in ERs, but also people who just have a lot of experience in social media, or looking at like air tables or something like that. So we have all this different experience that we can kind of put together to make the most, I guess, facilitate as streamlined as possible, the aid that needs to be given to people.
Stacey Simms 17:16
What kind of response Have you all received Since launching on social media late last year?
Honestly, it's it's very surprising, I guess, for me, it's surprising because, you know, the communities that I come from, they tend to be really small and kind of insular. Sorry, I know where this is going. Yeah. And just to see the kind of outreach like, we had, I think 150 person limit on the zoom call that we needed, like for the intro session, and we maxed out and then so many people were like, how can I get this recording? How can we get this up there. And we're all behind the scenes, like typing to each other, like, have we finished the like closed captioning on this. So it's as accessible to as many people as possible, we just hit 1000 followers on Instagram the other day. And it just makes me really proud to see that something like mutual aid, which can sometimes be seen as this really radical sometimes divisive thing is being received and being really, you know, shouted out in the community. So it's really cool to see that. And just knowing that we've had a pretty amazing impact so far, just in terms of the people that we're reaching, and making sure that it is inclusive, and it is by the community, like I said earlier, because you know, it's Black History Month right now, I don't know when this is gonna go up here, being able to talk about the roots of mutual aid in black liberation, things of that nature. And to kind of connect with the community, in those respects, just shows that people are all while one, it can be a sometimes divisive thing. It's also growing a greater community. It's welcoming people in in a way that sometimes we don't always see. And sometimes we don't always think about when we think about diabetes. Yeah.
Stacey Simms 18:59
And I think telling the stories over and over again, really helps because you never know who you're going to reach. And I tell the story all the time. We are so fortunate, you know, we've always had great health insurance, I never had to give my son supply the second thought until the day that we needed more insulin than we had. And I went I'm like, Oh, I'm just in between, I'm sure I can get another vial and it would have been $300. And I was stunned. I mean, you know, everybody listening knows how but I had never This was several years ago, I had never encountered this. And my pharmacist was able to put through like a vacation or emergency thing or whatever. But that was the turning point for me. And I'm almost embarrassed to admit that it took that happening to me, for me to understand one of the big problems and then of course hosting this podcast and meeting a lot more people that really opened my eyes. But I do think it can take that moment of Holy crap, this isn't somebody else, and then seeing it happen over and over again and reading the studies of one in four people rationing insulin, which is probably more now because of the the health insurance crises we have going on in this country. So I'll get off my soapbox. But I want to ask you before and I'm going to ask you what you will need and want from my listeners. But Emily, I'm going to ask you, what do you do? What's your profession or your expertise or your interest outside of that.
So I am actually currently in, I'm a graduate student, getting my master's in clinical mental health counseling. And my, hopefully, my focus, once I graduate, is going to be on working in a trauma informed way with folks with diabetes, because so much of our community has had these experiences that are just incredibly traumatizing. So whether it's running out of insulin and not knowing where your dose comes in, or having a doctor tell you that, like, You're stupid, because you don't know how to give the right amount of insulin when your supplies aren't coming through or something like that. There's just so much stigma. And there's so much trauma involved in trying to manage an unrelenting disease like diabetes. So my goal once I, you know, finish my clinical practice, or practicum, and internship, all that kind of good stuff is to be a mental health counselor, for folks with diabetes and other chronic illnesses. Because I think that integration of mental health care and physical health care is just so important. And prior to that I had I have experience in social work. So that's my love meeting with people.
And just like you were talking about those stories really are at the core of what connects all of us together. So when we can kind of sit down and talk about what did these stories tell us about ourselves? And how does that impact how we think about what's going on for us, whether that's diabetes, whether that's depression, anxiety, or you know, bipolar disorder, or Crohn's disease, anything like that, that narrative, as well as how we think about accepting that were the moral values we placed on these things can really have an impact on our mental health in day to day basis. So that's me. And it's funny, because I always joke that my classmates get radicalized on insulin pricing, just by being in classes with me. So I'm sitting there, and someone told me someone's talking about with managed care. And I raise my hand and I'm like, Can we like think about what it means to not have to think about insurance? And people are like, Oh, no, there, Emily goes again. Cuz all I talk about is like health care being a mess, I just wanting to change that. So that's me, outside of MAD, but I think it, it goes to show that you can sit down, and you can think about what your skills are and how they help connect people to other folks. And so I can take my skills in mental health and social work and apply that to mad by talking with people on a day to day basis about like, how can we get you help that makes it so that you have a more sustainable access to insulin over the course of the long term and things of that nature?
Stacey Simms 23:01
So what can people listening do? What you know, what kind of need can they feel for you? If they're interested in learning more? What should they be thinking about?
I think the best thing is that folks can do right now is just to kind of keep up with us as we're preparing to do our like launch 2.0, essentially, you know, we're working on making sure all of our systems for peer to peer supply sharing or peer to peer funds are as streamlined and not wonky as possible, I guess. And so just follow us on different social media. For right now. You know, we're pretty much Mutual Aid Betes Mutual Aid Diabetes on many different platforms on Twitter, Instagram, things like that. So just follow us for right now. And you can always if you need help reach out to us, I think that's something that we want to make sure everyone regardless of type of diabetes, regardless of any comorbid things that are going on for you, regardless of your you know, insurance status, or you know what your job is, if you need help, we're here to help you. So I think keep an eye out on our social media, we boost so many GoFundMe, so many requests for aid.
And then when we have a chance to kind of launch, do our 2.0. And even when we get that c3 status, which is coming down the road as we keep taking those steps towards it, then, you know, there'll be so many more opportunities for folks to kind of jump in and help out when possible. And I think my last thing is just to consider that it takes a lot of strength and a lot of vulnerability to ask for help. So when someone asks for help, sometimes I just like to take it at face value and not have to go through like, why is that person asking for help? What's going on? I remember when I posted my GoFundMe, like a month ago to crowdfund for insurance. I was like, I was filled with so much shame and I was like, I shouldn't have to do this. And it made me so upset that I was like sitting here on GoFundMe, trying to fill this out. And this was after I got involved with mutual aid diabetes, I was like, it's gonna seem weird that someone who is a part of this team is already asking for help. But it just takes a lot of vulnerability and a lot of strength in order to ask for help. So I think if we can extend some grace and empathy towards everyone who's out there asking for help, I know we're going to see a lot of those requests, especially as the pandemic goes on. But just remember that it takes a lot of strength to be able to do that. And remember that we are here to help each other, what do we owe to each other, hopefully, it's that community feeling that you are going to be caught. If you fall, or if you if there's a crack, we're going to help fulfill that and catch you when you're there when you're at that low point. So that's my hope for people listening is that they can just remember to, to see each person as a person that is requesting some kind of help. And we're here to catch our community. And that way, you also know, if you need some catching, if you need some support, we're here for you, too.
Stacey Simms 26:03
That's great. Emily, thank you so much. I wish you all the best. Thanks for explaining this. And I would love to follow up down the road. And please keep in touch if there's any way we can help or get more information now please circle back.
Of course, thank you so much for having me. And for you know, just considering that mutual aid is a really important part of our community. Like you said, we're probably already doing it. So now you have a name for that thing that we're already doing. And just keep an eye out at Mutual Aid Diabetes dot com we’ll tap you in when we need you!
you're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 26:44
Lots more information, you can find all of those links that Emily mentioned, at Diabetes-Connections dot com at the episode homepage. And of course, there's a transcription. We started doing that last year. And I'm really happy that the transcriptions seem to be going over well, but if you'd like to learn more, all the links are there.
And I just want to tell a story, you know, when Emily was talking toward the end there about how difficult it is to ask for help. It is such a sign of strength when people are able to do that. And I have a real personal experience, I'm not going to name this person or anything, but I have a friend in my local area, and her adult son has had a real issue with insurance and affording insulin for several years now. And because I run this big local group, it's not difficult for me to get what he needs. And you know, I don't know if it's because kids, you know, sometimes the insurance for children is better than it is for adults. But it just seems easier, right? When you're a parent, and you have a kid with diabetes, it just seems like it's easier to get insulin sometimes than if you're an adult, especially of a certain age, that weird insurance gap. So for a couple of years now, we've been doing this, and she asked me recently, and she said something like, you know, I can't believe you're still doing this for us. You know, I wish that he would get his act together. And she was embarrassed, she felt huge guilt. And I said to her, and I truly believe this, look, first of all, if it were my son, I would want the help. Second of all, you know, he's going to be okay, he's going to pick himself up and figure out what he has to do for work or whatever, at some point. And let's keep him healthy until he gets there. But truly, this is not his fault. In terms of affording the insulin, it is the healthcare systems fault. There was no reason for insulin to be as expensive as it is. And for him to jump through as many hoops as he has to and for her to feel like it's a personal feeling. I just think that encapsulated everything that you must feel when you're trying to ask for that kind of help. And I don't get you know, I don't get emotional on the show very much. And I tried to tell too many personal stories, but that really hit me because Come on, man. It's not It's not his fault. He is a person who was working. This is not some kid who is you know, laying on his couch and mooching off his parents. He just cannot afford what he needs right now. So it's one of the big reasons why I wanted to talk to Mutual Aid Diabetes and I'm hoping to kind of stay in touch and see where they go. And if you want to help all the information is there and you do with it, what you will, but I appreciate your listening here.
So thank you so much as always to my editor John Bukenas from Audio Editing Solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
She wore her insulin pump in the Miss America pageant back in 2014 and Sierra Sandison continues to advocate for people with diabetes today. In this Classic episode from June 2015, you'll hear from Sierra just as her book "Sugar Linings" is coming out.
We'll catch up you on what Sierra is doing these days, her advocacy work and her accomplishments outside of the diabetes community.
Article from DiabetesMine about Sierra's STEM studies & accomplishments
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Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by Inside the Breakthrough a new history of science podcast full of Did you know stuff?
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:19
Welcome back to the show. I always so glad to have you here. We aim to educate and inspire about diabetes with an emphasis on people who use insulin. I'm your host, Stacey Simms, and this is a classic episode which means for bringing back one of our early interviews, and this is one of the earliest my fourth episode, which originally aired in June of 2015.
Sierra Sandison is a big name in the diabetes community. You might remember her bursting onto our TVs and appearing all over social media after she won Miss Idaho and then walked across the stage and the Miss America pageant, wearing her insulin pump. She coined the hashtag Show me your pump, which continues to get lots of mentions today got millions and millions back then.
I remember connecting with Sierra like it was yesterday, I was on vacation with my family in Isle of Palms, which is a beach near Charleston, South Carolina. We live in North Carolina, but believe it or not, the North Carolina beaches are generally further from us than the South Carolina ones. So we basically went to Iowa palms, I want to say almost every summer when the kids are growing up. And if you've read my book, that's where most of the bananas beach stories happen with Benny getting sand in his inset and all that stuff that I talked about. But we were leaving, we were just about to be on our way home. And I had reached out to Sierra, I don't remember who it was over Twitter or email, because she'd already been in the Miss America Pageant that had been the previous year. And I hadn't I didn't have the podcast in 2014. But she was talking about her upcoming book, Sugar Linings . And I thought this is a great chance to get her on the podcast. So I reached out and you know, had just launched I don't even think I was on Apple and the other apps yet I had launched the podcast on my blog for the first three or four weeks. And she reached back and said yes, and I gotta tell you, I was so excited. I remember, like the dork, I am high fiving with my husband, he was excited for me. And I gotta tell you, I'm still just as excited to connect with people and hear their stories. It's just a thrill every time somebody says yes, so I hope that never goes away. Thanks, y'all for letting me do this. I really appreciate it. And I'm gonna catch you up on what Sierra is doing today in just a moment.
But first, Diabetes Connections is supported by insight, the breakthrough and new history of science podcast. It was created by SciMar, a group of Canadian researchers dedicated to changing the way we detect, treat and even reverse type two diabetes. The latest episode is all about how unpopular science can be very good science, Galileo probably comes to mind he was not exactly popular in his day. But there are a bunch of really interesting examples that they go through on this episode. Inside the break through you can find it anywhere you listen to podcasts. And remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
As I'm doing with these classic episodes, I reached back to the person you're talking to, to see if there's an update any information that they would like us to share and zero was kind enough to send me a message. This is five and a half years now after this interview you're about to hear and more than six years after the Miss America pageant, and she said that the main thing that she'd like to get across is that she has been trying to be much more outspoken about our advocacy efforts when it comes to focusing on insulin access and affordability in recent years, and I will link up another podcast She appeared on. She has been very outspoken about this and really trying to get information out there about better ways to advocate for lower prices and better access with insulin.
She also says she is at Boise State studying mechanical engineering with minors in biomedical engineering and computer science. She was recognized as the number one student in her junior class. She's working on starting a 3d printing company and she is set to graduate next spring, Sierra, thank you for the update. You are absolutely remarkable. And obviously she's keeping quite busy. Here is Sierra Sandison from July of 2015.
Thanks so much for joining me.
Sierra Sandison 4:25
Stacey Simms 4:26
It's great to talk to you. You have a new book, a new blog, we have a lot to talk about. Have you always been in pageants since you were a little girl?
Sierra Sandison 4:36
No, I was actually diabetes who got me in that got me into it. So at 18 I was diagnosed and throughout middle school in high school. I was bullied a lot I didn't really fit in. I didn't know what my identity was. I just like I just wanted to kind of disappear into the crowd. And this diabetes thing was another thing that the bullies could target and call it contagious and say it was my fault because of poor eating. How habits or lack of exercise, which weren't even like a part of my life. So it was ridiculous. But, um, I was just this. Just another thing on top of all the rest of the stuff that was making me different, that the bullies again, could target. So I get diabetes, my parents start pressuring me into training or into getting an insulin pump. And I kept refusing because like an insulin pump is a physical like external, very visible symbol of the fact that I have diabetes and
Stacey Simms 5:28
How old were you when you were diagnosed?
Sierra Sandison 5:31
Stacey Simms 5:45
I interrupted when you were talking about your parents wanted you to get a pump. And I asked about your age only because that's a difficult part of life anyway. I mean, you're transitioning, you're trying figure out what college is going to be like, or what's next. And here your parents think put this thing on you?
Sierra Sandison 5:57
Yeah, exactly. And especially as an adolescent female, that struggles struggled with self-esteem, it was not something I wanted to put on my body. So then, a few months later, and by this time, I was either just about to graduate, or I'd already graduated. I can't remember. But I it was at the beginning of the summer, I heard about Nicole Johnson and the woman who directs the Miss Twin Falls pageant, which is my hometown, came up to me, and explained who she was and that her kids went to my school and she knew I had diabetes. And that she thought, I wouldn't want to know that Miss America. 1999 also had diabetes. And I thought that was so cool. So I go and Google Nicole Johnson. And here she is this beautiful woman. And she I found out she has an insulin pump.
And up until that point, I thought that if I got an insulin pump, I would kind of disqualify me from being beautiful, because like, we are fed this definition of beauty, like we look at, we look at women on the front of magazines, and we compare, I compare myself to them. And I'm like, Well, my skin's not that smooth, and my hair isn't flawless like that. And this is not like this doesn't live up to that standard. And this doesn't live up to that standard. And none of them have an insulin pump. So therefore, that must not be beautiful. And now I see Nicole on Miss America, who has an insulin pump, and it's just like, super awesome. So I turned to my best friend that day at school. And while I was googling Nicole Johnson in class and I was like, Brittany, I am going to go to Miss America. And I'm going to wear an insulin pump. And she was like, I don't know what was going on in her head. She just looked at me blankly. But first of all, I didn't know what like how to use makeup or do my hair at all. I was totally, I was awful at everything I ever tried. So it was a struggle to find a talent. I'm not coordinated, like not athletic. Just like I just sucked to everything except for math and science, which didn't really help my popularity much. So I was just like, this dorky kind of nerdy person who always had a book and got made fun of so Britney is looking at me like, okay, like, whatever. But she was just like, what, like, the insulin pump is in like, the little machine your parents keep wanting to get and you're like, refusing to get it. And I was like, Yeah, she didn't. She didn't know where it came from. So then I go home and tell my parents, and they were like being the pageant like, Okay, if it's gonna get you an insulin pump, we'll get you an insert or like, we'll let you do the pageant and pay for this stuff. So Wow. So I compete in my first pageant. And guess what happened?
Stacey Simms 8:37
So you lost, but that was not what I expected.
Sierra Sandison 8:42
Yeah, so I lost, which was discouraging, but I didn't give up yet. I go to this other little pageant. So I competed Emma's Twin Falls, which is my hometown, but there's also these other little pageants in the state that anyone from the entire state can compete in. So I went to this pageant that was open. That's what it's called when it's like, open to everyone. And there's four other girls were at Miss magic Valley. There's like 20 girls, for Miss Twin Falls, there's like 20 girls. And at that pageant, I won. So I was qualified to go to miss Idaho, and I was so excited. I was like, that was easy. Like, now I just have to win was Idaho, and I will go to Miss America.
And so I show up at Miss Idaho, and there's 18 girls and the way Miss Idaho works is that Friday night, everyone competes. And then Saturday night, they read off the top 10 or top 11 and those girls compete again. So this year, they did a top 11 even though there's 18 girls, because I think they announced that they were going to do a top 11 before they know knew how many girls were competing. So Saturday night comes around and they read off the top 11 and I'm standing in the back with the bottom seven and it was so devastating because I at least if I didn't win, I at least wanted to make the top 11 and knock eliminated right away.
So I got really sad and Brittany was like, Okay, how about this? How about you were your insulin pump wall like solving calculus problems, and inspire little kids that way? No, Brittany, I'm gonna wear my insulin pump on stage. But at this point, I kind of was giving up on the whole Miss America idea, which kind of made me like sad, but I realized that everyone in the audience would hopefully have I think everyone, everyone in general has an insecurity. Like I had my insulin pump and insecurity that makes them different that they sometimes want to hide and I really wanted to encourage them to not only like not hide it and tolerate it, but also to love it and celebrate it because it makes them unique.
Stacey Simms 10:46
So how many Miss Idaho pageants did you enter before the one we all saw?
Sierra Sandison 10:51
Yeah, so Okay, so I go home, and I compete for missed one falls. And this time, there's like, a gazillion girls, but I win it. And that was a little encouraging, because I just won like one of the hardest pageants in the state. So I, that's a, it's a whole, that pageant takes place, like a week after Miss Idaho. So I had an entire year until the next beside Whoa, I worked really hard, like, really, really hard. And I won't go into detail. But that's what made the difference between year one and year two, and I get to it,
Stacey Simms 11:20
I understand you don't want to do it. What are your work on? Is it just your is it just getting in great physical shape? Is it more to it?
Sierra Sandison 11:26
So that's part of it. But um, mostly it's really finding yourself and knowing what you believe. So when you go into interview, any question that's thrown at you, because you know yourself so well, like, you can answer it. And so I went to Okay, let's see, in December, Miss Miss Idaho, who was who won when I didn't make the top 11 challenged all of the local title holders to a new year's resolution. And I was about to go backpack through Europe for five months alone, which is a self discovery journey in itself. But I everyone was doing like, I'm going to work out more, and I'm going to eat less candy or something. And I was like, I'm not going to give up carbs. Exercising in Italy, like are you crazy. So I knew that we couldn't be fitness based. So I decided to read one book a month, which I've actually kept up to this day. And it's just taught me so much. But and then of course, we have the Europe thing. And like traveling in Europe alone for a long time. Just to traveling just teaches you a lot. So that's what I changed.
So I get back to miss Idaho. And I really, I bow so I decided to wear my pump on stage. This is the first time I'll ever wear on stage because I hadn't more I will only wanted to work at Miss America where I could explain my story on TV into the media stations beforehand. And everyone would understand what the insulin pump was as well as my message. So I'm beside Whoa, there's a small audience. There's no type one diabetics watching. And I can't go out on stage and be like, Hey, everyone, like this is my insulin pump. And my message is for you to love the things that make you different. Okay, bye. Let's get on the show like that. So I get to miss Idaho in my pump, I put my pump on my pants. In that day, it just looked so much bigger than normal is like when I got a zit on my forehead and it looks like I'm so I'm trying to talk myself into wearing the pump and I'm, like freaking out. And finally I calmed down and I'm like, no one's gonna notice no one's gonna notice. So
Stacey Simms 13:27
why did you Why did you wear it on stage? And what was it like, just before you walked out? If that wasn't the plan, what happened that you said, All right, I got to do it.
Sierra Sandison 13:35
Um, so I didn't think I was ever going to go to Miss America because of the not making top 11 thing so but I really I got into pageants to where my pump on stage. And I wasn't going to give that up. Even though it wasn't the Miss America stage in front of millions of people on national television. I still wanted to know that I had the courage to do it. Um, so I walked out of the dressing room. And this little girl's staring at me and I met this in this like really self-conscious state like, no one look at my insulin pump, please. And the first thing she blurts out is like, hey, what is that she points to my insulin pump. And my heart sinks and I get really angry at the same time when I go back to the dressing room to kind of rip off the pump. And she's and she follows me and she explains that she's diabetic as well. And we get into the conversation about diabetes. And I end up asking her What kind of insulin pump she wears. And it ended up that she didn't have an insulin pump because she was really scared of what her friends would say. So at this point, I was like, I don't care what the judges think. I don't care what the audience thinks I'm gonna go where my insulin pump for this little girl and so that weekend I ended up winning and her mom came up to me and are her McCall is a little girl and her mom came up to me and Nicole was like, I'm getting an insulin pump. Oh my gosh. Oh my gosh. Oh my gosh. And then her mom after McCall ran off to tell some other friends how excited she was. Her mom came up to me crying because she's so excited that like she never thought her daughter would get an insulin pump agree to it. let alone be jumping up and down excited and confident about it. So that was probably the best. And then, of course, from there, I went to Miss America and made tough teen and yeah, yeah, there's
Stacey Simms 15:10
a lot more to talk about. Yeah, I have to ask you, though, it's just so inspiring to hear. But when you walked on stage, and you've been in pageants for a couple of years, harder to wear the pump, or harder to wear that bikini, because Wow, did you look gorgeous? Oh, my gosh, that was so hard.
Sierra Sandison 15:28
I actually have I so I, I work out a lot. And I like, I do CrossFit all the time. And I competed not now Geez, not now. But I competed in, like, power competitive powerlifting, or I guess that's redundant powerlifting competitions. So I was used to like being in like one piece, or just a sports bra and shorts. So that's like being in the bikini, scary for a lot of people. But it really wasn't that big of a deal for me until I put the pump on. So when did you realize that the pump
Stacey Simms 15:59
and the pageant was becoming an actual movement, you know, that people were responding so strong.
Sierra Sandison 16:06
Um, so I posted the picture online. And I kind of, I don't know, if some girl a lot of girls tried to start social media campaigns for their platform, and they just kind of flop because no one's really interested in them, if you know what I mean. So I was really scared that no one would like, like my message or because some people were telling me like, like fighting the beauty standards is stupid. And it's a stupid cause. But it's something I'm really passionate about. Because when I see someone like loving who they are, even though they don't look like a Victoria's Secret Angel, it really like encourages me to love myself. And so I really wanted to encourage that. But I also didn't think that anyone would take the time to take a selfie with their insulin pump. I don't think I would, I don't know. I just like, so I posted it. And then I went on with my day. And I got back to my phone. And it had like 1000s of likes, and 1000s of shares. And I went on Instagram, and people had been posting like crazy. And it was like it was incredible. So I think that like the same day or maybe the next day, I realized it was going crazy. It was awesome.
Stacey Simms 17:15
Do you have any numbers? Or do you know how the hashtag Show me your pump? How far or wide that went? I mean, I know you were on the Today Show. And good morning, American NPR picked it up?
Sierra Sandison 17:24
Yeah, I think so we, we did the math on the hits. And like number of viewers on all the TV shows and all the articles that were written. And we think my story reached about like five to 7 million people. And then as regard in regards to how many pictures were posted, you can't count those on Twitter, or Facebook. But on Instagram, there's almost 6000 today.
Stacey Simms 17:50
So the social media campaign is going on in the time between Miss Idaho leading up to Miss America. Was it difficult to balance getting ready for the pageant in September of last year, when you were also being asked to be a guest on national shows and little kids are coming up to you? What was that like?
Sierra Sandison 18:06
That was insanity. So I was actually the last girl. And out of all 50 states, I was the very last person crowned. So I had only eight weeks to get ready for Miss America, which is an insanely short amount of time. So I was super stressed. I was up like, from 8am to like, probably 1am. And it was just it was insane. And then you add all the interviews on top of it. And it was so overwhelming. But in the end, I think it actually helped because I was practicing interviews part of Miss America. And obviously, when I got to Miss America, the judges already knew about Show me your pump. And it was a big topic of conversation in the interview. And I had talked about it so much that I didn't have to stumble over my words, I knew what I wanted to say, etc. So having all those interviews with the media, which there could, there was like five, there could have been like five to 10 a day. Having all those interviews actually helped me prepare a little more even though it was a little hectic.
Stacey Simms 19:06
Okay, so you won the People's Choice Award in the Miss America Pageant. How do you find that out? Is that in a live on stage thing? Yes. So
Sierra Sandison 19:12
I just find it out when like live TV, I find it out as soon as you guys in the audience and across the nation do so that was what was that like it was I think I knew that I kind of had a chance. And in the past, I've tried to predict like the Miss America winters at home. And the way you predict the People's Choice person is by looking at the YouTube views and I was not winning in YouTube views on the People's Choice videos. So I was kind of stressing about that. And I really just I really wanted to wear my insulin pump on stage in my swimsuit. And that's all I wanted to do. I just was like make it to the top of team and then you can eliminate me Please give me People's Choice, please. And at the last minute I think Miss New Mexico had just like a rush of votes and my heart just like
Sierra Sandison 19:59
it's New Mexico.
Sierra Sandison 20:01
Yeah, my roommate and like one of my best friends. But I was like, No, like, this can't happen. So when they called my name, and I don't know, I'm used to like losing things in high school like being the last one picked for dodgeball team making, not making like even the JV team for basketball. So I was like, it's not gonna be me like, I'm used to this. And then he said, and you're the winner is Miss Idaho. And that's all after that moment. That's all I remember. Everything else is a blur. I think I fell down to the ground. And like, I don't even remember, his
Stacey Simms 20:33
pictures are pretty amazing. It's a wonderful reaction. I love it.
Sierra Sandison 20:36
So So what happened for you when you did go on stage? Oh, my gosh, that was the most amazing feeling because I know like, it just seems I don't know how to explain the stage like especially the same was with Dr. Oz, like the Dr. Oz studio was so like, exactly like it was on TV exactly like it is on TV in the Miss America stage is exactly what it is on TV. Except I can also see like, the tent, like the audience of 10,000 in this gigantic, gigantic room that's like a football stadium. So it was it was thrilling. And I just couldn't believe that I finally, like I reached my goal. And it was coming true right there. And I don't know, it was awesome. Fabulous.
Stacey Simms 21:19
It's really is a remarkable story. I'm so glad to share you what is next for you, you have a new book out, you have a new blog you're launching, tell us what this is.
Sierra Sandison 21:28
Yes, I'm so excited. So I've had this idea for a while. And like, finally, my friend was like, do it. And I don't know, all authors are a little self conscious about getting your ideas out there, because who's gonna read it, like, Who cares what I have to say, so my best like one of my, I call her my diet bestie one of my diet besties Hadley, George was just like, you need to write it. So I sat down in Cincinnati, probably in February and started writing. And I've been, like, just rapidly writing way since then. But it's called Sugar Linings , finding the bright side of type 1 diabetes.
And for me, diabetes has been a huge blessing, obviously, because of Miss America and all the opportunities it's brought me but I there's also things I also thought that before I really succeeded in pageants. So the other things I talked about, besides my own personal story are Sugar Linings that apply to everyone's life, not just inside the house. So I talked about how diabetes makes us more stronger and resilient. How it can bring us friends. So like Hadley, Hadley is like one of my best friends and I would not go back in time and get rid of diabetes, if it meant losing her friendship, and then how it can give us a passion. So lots of people get diabetes and then become very involved in fall in love with JDRF, or whatever diabetes organization they decide to volunteer with. And the same is true for a lot of other hardships, I think we face in life, whatever thing you go volunteer for, usually people have like a very personal story of why for why they got involved, and why they became passionate about it. So and I think being passionate about something. And making a difference is a really important, like part of all of our lives, like when I go to schools, a lot diabetes, and at the end, I always close up with whatever hard thing you're going through, like use it to make yourself stronger, and also make a difference. And I asked all the kids like who wants to make a difference before they die, and everyone's hands flies up. And it's just like, so encouraging to know that, like most humans just have this natural desire to make a difference. And diabetes gave that to me, and I hope it can give it to a lot of people. But if someone for example, isn't isn't like passionate specifically about diabetes, even though they have it, the last chapter in my book is about how it does increase our ability to show compassion, empathy, so we know what it's like to get misinformed and hurtful comments and just deal with this disease and the stress that goes along with it all day every day.
Stacey Simms 23:54
The book is called Sugar Linings . And the blog is also Sugar Linings . But the blog is a chance for other people to tell their stories.
Sierra Sandison 24:02
Yeah. So I'll also continue telling, like continue updating people through that blog on what I'm doing and what's going on in my life. And maybe if I discover a new sugar lining, I'll talk about it. But I really wanted to give other people the chance to tell me about how it's made them stronger about their like diversity about how diabetes gave them a passion to serve the diabetes community or maybe a situation where their diabetes experience gave them empathy for help them be empathetic towards someone else. Or if they have some sugar lining that is maybe unique to them or maybe true for everyone that I just haven't thought about. I didn't mention my book, but that they want to let the diabetes community know. So we can add another sugar lining to our list.
Stacey Simms 24:51
I have a couple of questions that I was asked to ask you. If I may, when people found out I was talking with you. Rebecca would like to know how you deal with the down days when having diabetes on board just feels like it's it's too much to handle.
Sierra Sandison 25:08
Yeah, so there's two things. One, I think the hardest week for me was actually that time where I was visiting Hadley in Cincinnati, and she encouraged me to start writing this book. I think my pump like malfunction, so I was like, Hi. And then when I got like, they got my new pump to me super quick, which they're, they're awesome about that. So they got into come to me, but I'd been high for a little while. And then I got my new pump on, and my insulin had expired, because it had been in like the heat. So then I was high for another four days before I figured that out. And I was just like, Oh, it was miserable. And I had like five schools every day that had to go to the speedway. And at the same time, I was kind of going through this identity crisis, where people tell us over and over again, like, diabetes isn't who you are, it's not part of your identity, like you're so much more than your disease. And here I am, like, I am the diabetic beauty queen like that is my identity to most people. And I was kind of feeling guilty, like, should diabetes, not be my life, like, I'm so involved? Should I, like get involved with something else and not do diabetes? Does that make sense at all? Oh, absolutely.
Stacey Simms 26:19
I think it's difficult for any of us to find a balance.
Sierra Sandison 26:21
Yeah, I was like, Oh, I felt just felt like it was overwhelming my identity. And Hadley has an organization called type one teens that she started. And she like, she came into my room because I was crying. And I kind of opened up to her about it. And I felt so so guilty about feeling that way, like feeling like, I shouldn't be serving the diabetes community. And she's like, Oh, my gosh, I totally know how you feel. And she kind of made me feel like, it was just a natural feeling. And she's always the person usually, she's always the person I go to when I'm having just like the down days. So first of all, I use my diversity to get over him and or to get through the down days. And then second of all, something that's really inspirational to me is when I meet people who have lived with diabetes for like, 30 or 40 years, and like I'm, and that wasn't in 2015, like, they didn't have a Dexcom they didn't have like an awesome touchscreen insulin pump from Tandem. They had, like, the like, we hear horror stories about what like the diabetes products they use. So like if they can do that with those. With those, I don't know what to call them. The
Stacey Simms 27:30
The, the bad old days of diabetes, right? I mean, the old tools like boiling needles, that kind of stuff.
Sierra Sandison 27:35
Yeah, do 40 years, and most of those years have the old diabetes tools, and they have way less resources and dealt with a lot more misdiagnosis and misdiagnosis sees, is that the word? And we do today like I can do today. I'm curious
Stacey Simms 27:54
with what you just said, Do you have an obligation to always show your pump? I mean, I'm curious, you know, you're the show me your pump lady? What if you don't feel like showing your pump? Does that come into your mind?
Sierra Sandison 28:04
So it is totally okay, if anyone does not want to show their pump. And I had to come to terms with that this year, because I get like, I'll post a picture where my insulin pump is like tucked in my speakeasy and I'm wearing a dress. It's totally not visible. And some mom will comment and be like, Where's your pump? Like? My Are you hiding your pump? Like I don't want my daughter to see this. And I'm like, they don't say that word for word. They'll say where you're pumping, where's your pump, but that's like, how I feel when they say that. And it was really hard for me for a long time. Because like I'm a human being I don't want I don't want diabetes to be the forefront. Like I said, like I struggle with that identity thing like is diabetes like, like a whole, like 75% of my identity now, and I don't want it at the forefront or like in front of everyone all the time. And at the same time. I'm not ashamed of it. But I just don't want it to be the topic of discussion constantly. And Kerri Sparling, who's the blogger in charge of six and tomie.com. just posted she went to like a red carpet event with her husband. And she posted a blog about how she the dress she got just like she there's no way to make it look great with an insulin pump. So she decided to take off her insulin pump and do shots for a couple days. And like, that's okay. And I I commented. And I was like this, like means so much to me. Like, I feel like I'm not allowed to hide my pump. And it's not that I'm hiding it. It's just that I'm not. I don't know, I'm not like purposely hiding it. I just like don't want it front and center sometimes. And I met her this last weekend at a conference we were supposed to speaking at. And she was like that I'm just like, so that comment just warmed my heart and I'm like, you just need to know that it's totally a natural feeling to not want to show your diabetes all the time and like I don't care what your fans say. Like if you need to hide your pump once in a while. Like you should feel okay to do that. So with that, I mean you're you know, show me your pump is wonderful and empowering but it doesn't mean you have to wear it on your head. Yeah.
Stacey Simms 30:00
Michelle asked me to ask you, if you have advice for parents who are struggling to give their kids with diabetes independence.
Sierra Sandison 30:07
Hmm, that is so hard. That's like, I always talked about this at conferences, and I haven't, there's no perfect answer to it. But I do think a balance is really important. Between like, keeping your kids safe, and making sure you're empowering them and giving them independence at the same time. And I think with so I didn't get diabetes till I was 18. So I was immediately independent, and that was fine. But in everything else in life, my parents were really, really strict. Up until the point I was 13. Like, the most insanely strict parents you'll ever meet, and then back by, like, at 13, they decided to like start. So and this is all they're like, they had this all planned out in advance, at 13. When each of me and my siblings, my siblings, and I turned 13. They started like, slowly, carefully, like making letting us be more and more independent, and at the same time, instilling like adjectives into us, like, you're so responsible, you're so intelligent, you are so like, independent, we're so proud of you. And even when those things weren't true, like those statements were definitely not true throughout most of my high school, but they kept instilling them in me. And eventually I was like, Yeah, like, I am responsible, like, that is my identity. I'm, I'm smart, and I'm responsible. And I'm not going to make this bad decision
Stacey Simms 31:23
theory this, your book is launching, this is a very busy time for you. What are you most excited about?
Sierra Sandison 31:28
Oh, my gosh, I am excited, huh?
Sierra Sandison 31:32
I Well, I'm
Sierra Sandison 31:33
most excited, I think so a lot of girls, when they hand down their crown, it's a really bittersweet time, because they've been so busy all year, and they're exhausted. So now they're gonna stop. But at the same time, they kind of don't want to stop. And for me, I've like figured out the balance. So I'm not exhausted, and I'm having a blast. And there have been like, back in like, January and December in November, I was exhausted. And I was like, holy cow, I need, I cannot do this. So I kind of like learned how to say no to things so I could survive. And now I'm at this perfect balance where I'm not too busy. And I'm really enjoying it. But if I was anyone else, I would have to stop on June 20. And because of Show me your pumping because of the awesome diabetes community I've been, I've been I have like events booked out and conferences to go to, until like December right now, which is super exciting. Because I don't have to stop like being decided, oh, I'm not allowed to wear the crown. I get to do everything else that I love. And I'm not really I'm kind of like a not a girly girl. So I don't care about the crowd anyways, but people still can try it on. So
Stacey Simms 32:34
literally, you can bring it with you. But you can't put it on.
Sierra Sandison 32:37
Stacey Simms 32:37
exactly. All right, the next interview is going to be all of these pageant rules, because I didn't know any of this stuff. Yeah, that's terrific. So you can so so you know little girls or even the girls like we could put it on and take a picture with you. Yeah, that's great. That's great. Sarah Sandison , thank you so much for talking with me today. It's been so much fun and the books gonna be a big success. I hope we talk again soon.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 33:10
More info on Sierra and what she's doing now and then taking a look back at her story. You can find all of that at the episode homepage at Diabetes connections.com. I mentioned towards the beginning of the show that she's focusing a lot on insulin affordability and access. And she stepped down a while ago from her position at beyond type one, she was in a kind of a volunteer leadership position there and stepped down over this issue. How you might have seen that on social media A while back if you didn't, I will link up again, the more information on the story behind that and so much of what she's doing now, really just a remarkable person. And of course, I'll link up the information on her book Sugar Linings .
Alright, I am working on a bonus episode that might come out in the next couple of days. I have an episode about mutual aid diabetes, this is a new group that has sprung up recently trying to kind of organize and get better information out to the community about a problem that again, insulin affordability and access but it's something that many of us are already doing in our local communities, right getting insulin to people who need it at least we do that in in Charlotte, I mean, I've hopped in my car several times in the last couple of months and careered you know insulin here there and supplies and things like that. And I bet you have done that too. Or at least connected on social media or amplified some mutual aid diabetes is trying to be more organized about that. And our next regular episode is all about low blood sugar. I am talking to two powerhouses of the diabetes community ginger Vieira and Mike Lawson and we will be talking to them about their new children's book but really about low blood sugar what it feels like what people without diabetes who care about people with diabetes should keep in mind all that good stuff.
Question for you before I let you go too many episodes. What do you think? Right? We're at two episodes a week now with these classic episodes started that back in February and throwing Get a bonus episode and my overwhelming you. You don't have to listen to every episode. I hope you don't feel guilty if you don't, but I'd love to get your opinion. What do you think here? Is this the right balance? Should I cut back? Maybe go to one episode every two weeks space it out a little bit more? Let me know I'll put it in the Facebook group as well as a question for you. Thanks as always to my editor John Bukenas at Audio Editing Solutions. Thank you so much for listening. I will see you back here in just a couple of days until then. Be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Spare a Rose has become an annual tradition in the diabetes community. The idea is simple: this Valentine's Day buy eleven roses, rather than the traditional dozen, and donate the money you save to the campaign. The cost of just that one rose will provide a child with diabetes in an under-resourced country enough insulin for one month.
This interview is from our first Spare a Rose episode back in 2016. Stacey talks to advocates Scott Johnson, Kerri Sparling & Bennet Dunlap. In addition to learning more about he life-saving program, they also play our very first game show.
Find out more and donate to Spare a Rose via Life for a Child
Get the App and listen to Diabetes Connections wherever you go!
Episode transcription (untouched by human hands - our computer doesn't speak diabetes very well - check back for the edited/cleaned up transcript!)
Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by insight the breakthrough surprising stories from the history of science. This new podcast connects old stories to what modern day medical researchers are facing.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:23
Hello and welcome to one of our classic episodes. I am so glad to have you here I am your host, Stacey Simms. And as always, we aim to educate and inspire about diabetes with a focus on people who use insulin. I want to talk to you about sphere of Rhodes. And if you think you know what that is all about, stay tuned anyway, because I guarantee nobody else has done a podcast like this on this issue all about sphere arose. So what is it? Well, each February since 2013, the diabetes online community all over the world has supported the charity life for a child through the spare aros save a child campaign. It is a very simple idea. Valentine's Day is coming up in the campaign goes all throughout February. But the thinking is that you should send 11 rather than 12 roses to the person that you love on Valentine's Day. And then the money that you saved from that one rose goes to spare a rose, and that one rose will provide a child with diabetes in an under resourced country enough insulin for one month. The math here is pretty simple. One rows equals one month, there are links in the show notes that on the homepage, I'll put them out on social as well with more information and easy ways to donate. I set mine up every year to just kind of keep going every month. It's very simple. And I was really excited way back when for my first spare arose episode on this podcast because I got to talk to three terrific advocates who helped create and nurture the program and continue to do so today. So I'm really excited to bring you this classic episode from 2016, which also features my very first game show on this podcast. We'll get to that in just a moment. But first, this episode of Diabetes Connections is brought to you by inside the breakthrough a new history of science podcasts full of digital stuff. The most recent episode is all about the electric car. I got a sneak peek, sneak Listen, I love this show. It is all about how bad timing killed the electric car. But it's also explaining rural versus urban, and women entering the workforce and there's so much going on in the background of the story. Inside the breakthrough was created by Simon Simon is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. You can find inside the breakthrough and this latest episode at Diabetes connections.com or just search for it anywhere you listen to podcasts. My guests this week are three people familiar to many of you. They always step up when they're needed. And I'm lucky to call them my friends now. Scott Johnson works at my sugar. He was there back when we spoke for this interview. But I knew him best at the time from his blog, Scott's diabetes. Bennett Dunlap has two children with type one, they're adults now. And since we first spoke, he has been diagnosed with Type two. He's been very open about that. He's been writing about that. And we last spoke when we were on a panel in gosh in November, December just of last year, and he was continuing to share his story. Carrie Sparling was writing six until me every weekday at the time of this interview, she did close the book on that blog not too long ago, she has just published a book of poetry. It's called range bolus. And I will have a link in the show notes I just found out about that I haven't had a chance to order my copy myself. But I will very excited for carry on that. And another note spare arose itself has changed a little bit since this interview, you'll hear us talk about Johnson and Johnson's involved made a few other points that may have changed, but the mission and the need have not changed. So if you can help, please do so. And remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Then it Carrie and Scott, welcome to Diabetes Connections.
Unknown Speaker 4:09
Oh, thank you, Stacey. It's
Unknown Speaker 4:10
a pleasure to be here.
Unknown Speaker 4:12
Thanks for having us.
Unknown Speaker 4:13
Yeah, it's a thrill. Thanks,
Stacey Simms 4:14
Kerry. Let's start with you. Tell me a little bit about how spear rose came about.
Kerri Sparling 4:19
I'm sure and I'll probably screw it up just a little tiny bit. So guys feel free to jump in and correct me at any point. But I'm spare Rose was born out of as you had mentioned, the Partnering for diabetes change group kind of got together and tried to come up with an idea and it's not exactly it's actually not at all sponsored by the IDF but their charity life for a child benefits from this program. So what it is like you said, you know, instead of buying the roses, you you really what it actually is, let me just back up a little bit is it's a way for those of us who have access to a lot to acknowledge that privilege and to kind of pop that bubble of privilege and help touch the lives of people outside of that access point. And you know, give a little of what we have two other people living with diabetes. We know what it's like. to miss an insulin injection or under calculate an insulin dose, we know what high blood sugars feel like the idea of having a child suffer from that and potentially die from that is too heartbreaking to even comprehend. So if there's a little bit that we can do to help move, the mission forward of gaining access to insulin for other people around the world, you know, in developing countries, we were like, yeah, this is something we we can't not do this is this is a must. So we all got together and decided that we could try to rally the community around this cause I think it's been very successful. Because again, it's not like one person or one group or one. I don't know, any driving force that that that runs this, it's everybody touched by diabetes has the chance to reach in and impact lives in a really, really big way. It's kind of hard to say no to that.
Stacey Simms 5:45
And Scott was part of the idea here to keep it kind of simple. I mean, you buy food, you can still buy flowers on Valentine's Day, but maybe donate the value of just maybe one or two roses, what that would cost.
Scott Johnson 5:55
Yeah, absolutely. I mean, simplicity is, is really important. When it comes to ideas like this, and I think ideas need to be simple in order for them to take off and and for a lot of people to get behind them and support because they have to be simple to understand for those of us who are really involved in the in the community and involved in diabetes, we understand and get it. But we're we want this message to reach many people who are not necessarily touched by diabetes or not, not that involved in the community. We wanted to reach a much wider audience. And so it needs to be a very simple idea, both simple to a to explain, simple to understand and simple to do as well.
Stacey Simms 6:46
And Bennett, you're very involved in policy, do you think people are still surprised to find that, while we're talking about a specific kind of access here in the US, perhaps that in other parts of the world, the access is is much more limited?
Bennet Dunlap 6:58
You know, I think that maybe they are and maybe it's a good thing that we remind them, but I don't think that anybody is surprised that insulin is hard to get and economies that are struggling. So like Carrie said, this is an opportunity for everybody to join in. Nobody owns sparrows, the community own sparrows, you own sparrows, because you're doing this podcast, God owns it, because he writes about it, whoever jumps on board is a part owner of what we're doing here. And like Scott says, It's super easy to do. So what do you do you go to spare arose.org all one word sparrows. And you click on the big rows at the top of that page. And it's going to take you to a donation page. And you can give through PayPal stupid easy, there's two dropdowns, you can give a one time gift you can give a rose. So you know Valentine's Day, a full bouquet of fancy dancy roses is maybe 60 bucks. So you take thinking give 11 take five bucks, give it the sparrows that's going to help a child stay alive for a month. Or maybe you give monthly, maybe you give a rose every month, that's a full dozen roses over the course of a year, five bucks a month. I mean, I got a Starbucks coffee staring at me. And you know, five bucks a month is way less than what I spend on coffee. And that will keep a child alive for a year. So you go to sparrows.org. either click on the give button or just click on that giant rose on the top there. Click the drop downs for whatever type of donation you want to make. Make the payment through PayPal, boom, you're done. You've helped save a life.
Stacey Simms 8:35
And Carrie has been described as stupid easy, which I think is great. Bennett it really sounds like it's simple. Okay, you know, what has this come to mean to you this is I believe this is the fourth year that you will have tried to get the word out and supported this. Are you seeing change through it? Do you feel like this is something that will continue? Oh, God, I
Kerri Sparling 8:55
will I mean, I I really hope it's something that will continue. But I think that change happens twofold. The first is the most important change, which is every every little donation goes and changes and improves and potentially saves the life of a child that's that is the Paramount thing, the thing that should always be on the forefront. But secondarily, people in the community are becoming more and more aware of what we truly have access to and how lucky we are as a group of people. I mean, here we are sitting on this Skype call. We're using our computers we texted before using our emails, whatever super privileged, very lucky, I don't worry about where my next injection of insulin is coming from, but to think about Hey, what's it like to worry about that what's it like to not have access to something I'm so accustomed to, to recognize how lucky we are, helps people step outside of themselves, help the community kind of evolve and grow in a way that really benefits everybody, not just the people in the community but the people outside of the community who are part of the community, but are benefiting from this campaign. We never meet these people whose lives that were changing but but knowing that we're able to, to make that change. That's really powerful stuff. And I'm hoping that out through this campaign, it helps kind of bring to bloom other ideas from different groups about how to acknowledge what we have and spread the wealth.
Stacey Simms 10:10
Well, that's a really good point. Because Scott, as the point was made here, you know, this is not an idea that has a little tm after it, there's not really a copyright. Right, there isn't a tm, I didn't make that up. Just to just to check. So when we say no one owns this, and the community owns this, Scott, how have you seen that taken off, because it does look like the diabetes community really has embraced it?
Scott Johnson 10:34
Well, I think it's important that that that it is embraced by everybody. And this is an idea that, that needs to be owned and embraced by as many people as possible. If If, if there's someone that tries to own something like this, it just doesn't go as far. So the whole thing is just get it out in, in, owned by owned by everybody owned by anyone that can talk about it or share it, you own it, you You are a part of it in and everybody involved with it, as is so thankful that you are doing what you're doing for it. So yeah.
Stacey Simms 11:12
I'm curious to you know, the diabetes online community is a very big community. But it also seems very small in that we all kind of get to know each other. And you know, you really are many people are very accessible on Twitter, or you can you can reach them. I guess what I'm getting to and Carrie, let me read this to you is, how did you all come up with this? We talked about the you Partnering for diabetes change? What is that? Did you all sit around a table and Scott had his diet coke? And you guys kind of talk about it that way? How did it come about?
Kerri Sparling 11:43
The sparrows idea itself?
Unknown Speaker 11:45
Kerri Sparling 11:46
well, this, the Partnering for diabetes change coalition is a group of people who were brought together with assistance from Johnson and Johnson. So we do have to give them a huge nod because they, they don't own this project. But they've helped in part to shepherd it. And I'm really proud of of the investment that they've made in bringing the advocates together so that we could incubate this kind of idea, the idea itself, and Jeff is going to hate me for saying this. But the idea was actually born from Jeff Hitchcock, who runs the children with diabetes group. And it was just latched on to immediately by everybody in the room because it didn't serve an agenda. It didn't serve anybody's ego. It wasn't this Oh, look at me sort of thing. It was more this is actual social media for social good. This is a powerful thing. And everybody just took it and, and ran with it. So it was it was an awesome meeting. And what's come of that is, like everyone has mentioned already, nobody owns it. So this one idea, which was incubated by the group has been grabbed by the community of people living with diabetes, and beyond the diabetes community, into the patient community, and to people who work for diabetes companies. I mean, there's a lot of potential for this idea to spread. And it's a good idea to spread.
Stacey Simms 12:51
And better give me your perspective, because as I mentioned, you work a lot now, with policy and that's been your interest for a while, put this in perspective for us in terms of how much easier perhaps something like spare Rose is to create change and to have an actual impact, as opposed to trying to make change happen legislatively? Well,
Bennet Dunlap 13:12
you know, I'll tell you, I think that spirit Rose is the foundation of other change. I will tell you flat out that when we did the strip safely campaign, I went took the notes of how we created sparrows and just replayed them with different branding. So, you know, you mentioned that the community is large, but it feels small, I think the community is large, but it feels intimate. And what we can do with that intimacy is ask each other to help. And sparrows, to me is the very foundation of helping because like Carrie said, You're helping people you don't know you'll never see them. If you're super lucky, maybe you'll be at an event where IDF shows some of the art that these kids make, you know, and it's typical refrigerator art. In it, you see a little bit of an image of a kid that realizes they're staying alive because they're getting this magic Insulet from somebody. And that to me is the key is that we do things for others. We do things for people that will never see and then eventually we can do things for policy. But you know, if we're not living for others, we're never going to get to the policy stuff. So to me sparrows is foundational in everything we do. It's all about other people and taking the gifts you have and sharing them.
Scott Johnson 14:30
It's you know, there's it's important to know that any anything helps, right like, this has been a really wonderful idea. We've seen it go a great ways so far. But if if all you can do is is one rows, that's a tremendous help before you can do a spread if you can't do one rows, but you can help spread the message. That's also a tremendous help like don't undervalue whatever You can do to help this cause it all, it all goes a very long way.
Bennet Dunlap 15:05
You know? Absolutely, it's about doing what you can. And when we track what happens, we track how many people have given, doesn't matter how much you give that that you give is important to us. And if you can find five bucks, that's great and echo what Kerry said, you know, we really fortunate that the J and J brought us all and put us all in a room and then step back and, and let ideas flow. And I agree with what carries it Jeff came up with this idea and we jumped all over it hijack the rest of the agenda and spent the day figuring out how to make this work. But it isn't just j&j to get help. So if you have a business and you want to do a fun morale booster in February, let's face it, February in North America sucks. It's cold, rainy, and awful. or snowy and awful. So have a little campaign in your office put a little sign up by the coffee pot. It could be you know, your your local HVC vendor, it could be another company in the industry. Whatever this isn't a company's it isn't a person. It's everybody's
Stacey Simms 16:12
more info on all of this at Diabetes connections.com. And I really hope you find it in your heart to learn more and to donate spare rose is a great cause. And we're going to do our best to make our own donations with something fun today. If you're familiar with Wait, don't tell me the NPR Quiz Show. This next segment is with full credit. And full apologies to those fine, folks. We're gonna have the Diabetes Connections version of bluff the listener and a News Quiz. If you're not familiar with Wait, wait, don't tell me. If this will still be fun. It's just kind of kind of silly. All right, so we need to welcome a listener. And I'm so excited to welcome Laura Duvall. She is here in Charlotte, and she's a published writer, founder of duelled marketing group. Laura, thanks for being here.
Unknown Speaker 17:01
Absolutely. Thanks for having me. I'm excited.
Stacey Simms 17:04
Laura, you have type 1 diabetes, right? Tell me a little bit about about you.
Unknown Speaker 17:10
Oh, absolutely. So I was diagnosed with Type One Diabetes, when I was 10 years old. And have really benefited I think over the last 20 years, 25 years or so with the new technology in play for diabetics. So I got a pump when I was in high school that really allowed me to kind of play sports and go out with my friends. And about two years ago, I got one of the Dexcom sensors, which has totally changed my world. I'm a big runner. So I have done quite a few half marathons, was actually training to run the Disney marathon this coming weekend I got injured. But the technology that's available for diabetics now is really amazing. I mean, it just gives you confidence that, you know, you can be an active and force and you're not having to test your blood sugar 800 times a day. So you know, I have had really benefited I think from the advances in technology with diabetes and you know, love love being involved in the starlight community and then the health and wellness area. I've worked for a health care system for about eight years in marketing and and now have stepped out on my own to do the same thing. So I'm really excited to be a part of today.
Stacey Simms 18:27
Excellent. Well, thank you so much for joining us. And you, you set this next segment up perfectly talking about new technology, because every year, there are lots of announcements of diabetes, product breakthroughs, and some are useful and very helpful and they change our lives for the better is easy, we're just talking about, but some make a splash never really take off. And others are just abject failures, like the ones you're going to hear about. Our guests are going to relate a story of a failed diabetes product. One of these products is for real it made it to market, but the other two are products only of our imagination. Laura, if you can guess which is the real deal. And Bennett, Carrie and Scott are going to do their best to fool you. Diabetes Connections will make a $50 donation to spare rose in your name. Are you ready?
Unknown Speaker 19:18
I'm ready. All right.
Stacey Simms 19:19
Carrie, are you set? Why don't you go first?
Unknown Speaker 19:22
let me sell it to you.
Kerri Sparling 19:24
So tech savvy type one teens have created a new app for your smartphone or tablet. It's called selfish and it's aimed at those whose parents use remote monitoring software like you know, Dexcom share nightscout. So the app creates a fake book kind of reasonable blood glucose graph, which is that beam back to the parents device. So when they look at their phone, they're like, Oh, good. My kid is doing what they're supposed to be doing. And it also includes text notifications, like yes, I checked or Yes, I have my neater however the Creator is being teenagers, you know how teenagers are. They couldn't resist being kinda like slightly jerk faces. So an early version of the app included hidden jokes and a few inappropriate It references to Nick Jonas as most things do. Parents nearly half as stupid as teenagers think they are picked up that something might not be exactly right after the first few references to this Disney Channel though Daya booty which is they give you a weird even saying that out loud.
Unknown Speaker 20:14
But the tech
Kerri Sparling 20:15
savvy parents have since created an override app and are on the lookout for updates. Not everybody
Stacey Simms 20:21
says diabesity carry that's not in your everyday vernacular there. Because that's
Kerri Sparling 20:25
what that is my wheelhouse, but I just felt weird saying it to all of you.
Stacey Simms 20:29
Okay, so the selfish app created by teens is our is our first story there. Bennett. Let's hear what you have.
Bennet Dunlap 20:39
Okay, well, I'm going to tell you about this great app. It's called the Neuchatel food analyzer. And it was going to be the answer for counting carbs on the go. You take a quick picture of your food and your phone. It delivers it the live operators at Neuchatel. And within three minutes, they promised an accurate within plus or minus 20%. So your judgment on accuracy may vary. carb count, users can also pay for upgraded access to more food information as well as ingredients and warnings for gluten allergens. How ever the product never made it out of beta testing, because that's when users found out that each meal came with snarky comments like, oh, that salad looks really delicious, good choice, or in my case, boom. Do you really need to eat that slice of cheesecake? Or Didn't you have a hamburger yesterday, further investigation showed that not only were the people behind this app particularly judgmental, they were also a division of a large Health Insurance Group. In other words, the neutral app would tell on you giving your insurance company valuable information about your eating habits. And once the word got out, the community went after it and it was scrapped.
Stacey Simms 21:50
Bennett's telling us about the nutrit L Food app which basically told on the user and their eating habits to health insurance. Scott, what do you have?
Scott Johnson 22:00
All right. Imagine using a laser to painlessly perforate your skin to get a drop of blood instead of having to use a metal needle. A company called a cell robotics created the laser net, which used laser energy to penetrate the skin. testing showed that adequate adequately trained patients could perform finger pinpricks with the laser device as easily and accurately as with land sets. But the laser required some difficult maintenance and instruction. And there was a noticeable odor of burning flesh with each test. Some user said that was a bit of a turn off, the price may have also kept this one from taking off. One LaserJet device cost about $500. Maybe because you could get close to a lifetime supply of regular lancets for that the laser printer is no longer available for purchase.
Stacey Simms 23:08
All right, Laura, your products are the lay set, which gave you great accuracy without having to poke your finger with a needle however, the smell of burning flesh turns people off the Nutri Patel health food app, which told on you or the selfish up which was developed by teenagers to fool their parents who use share and nightscout which one is real, which one is the real product that we did makeup
Unknown Speaker 23:36
was easy. As much as I would love to say it was the diet booty. I'm gonna go with number two, the neutral cow,
Stacey Simms 23:46
then it is the neutral tell a real deal.
Bennet Dunlap 23:49
I know it's fake.
Unknown Speaker 23:53
But I want
Bennet Dunlap 23:54
you to tell and diabetes, you're teaming up to sugars, but fake your carb counts.
Stacey Simms 24:02
We're still gonna make the donation to spare Rosie your name because you were such a good sport. And this was so funny. But yeah, the lace set. Scott, did you know about that product before you read about that?
Scott Johnson 24:16
A little bit. But it's like one of the many things that we often hear about as people living with diabetes where you know, these things come to market and you're like, Okay, this sounds so ridiculous that I'm just not going to even give it much brain bandwidth. So yeah,
Stacey Simms 24:34
yeah. But it was a real product. I don't know how far along because it was it was I think it was a little bit before my time in the diabetes community. Laura, it sounded like you might have heard of it when we mentioned it again.
Unknown Speaker 24:45
Yeah, it does sound familiar, something I may have read about. I think I just in my mind, I was thinking you know, the nature style app seems just like something that I could be going to market and just being a terrible disaster. I'll tell you what's funny. With my gut,
Unknown Speaker 25:00
Stacey Simms 25:01
that's okay. But what's funny to guys is, I just saw this week that I'm not a app that hopefully reports back to anybody else. But that there are a few camera like devices that claim to show the nutritional information in your food. I mean, I think that's awesome. Yeah, very interesting stuff. I'm not sure how much we you know, we'd have to see some studies to trust it. But that That to me is amazing. Amazing. Absolutely. Well, Laura, thank you so much for playing as I said, we're still gonna make the donation to spare rose in your name. We really appreciate you taking part and thanks again.
Bennet Dunlap 25:35
Unknown Speaker 25:41
Scott, yeah. Oh, sorry. I
Kerri Sparling 25:43
was gonna say I love the way you read yours. Because the entire time every time you said laser, I kept picturing Dr. Evil.
Unknown Speaker 25:52
Unknown Speaker 25:54
sir. Awesome. I just
Scott Johnson 25:56
had this, this image of like a waft of smoke coming up from her finger. You know.
Unknown Speaker 26:07
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 26:13
And our last segment today, we want to give you guys a little bit of a quiz. I don't think you can really prepare for this. So I hope you didn't study too hard. But as we mentioned, Kerry writes the award winning blog six until me, and the title refers to a piece that she wrote from the point of view of diabetes, which came into her life at age six, six until me and I'll link that up at Diabetes, Connections calm, I'd urge you to read it. But today, we're going to find out how much you will know about diabetes, and years ending in six. For this quiz. You'll hear a fact about diabetes and choose which year it happened. I'm calling it which six will it be? as well,
Kerri Sparling 26:56
I after I feel like I need to jump in because I've already screwed up the quiz. I was seven when I was diagnosed, I was using poetic license. I didn't think about SEO and I just now screwed up the entire podcast. So I'm sorry. My symptoms were when I was six,
Unknown Speaker 27:13
but the actual diagnosis was seven. I'm gonna hang up now. Even if you're a really good person, I really like you.
Stacey Simms 27:25
Thank you very much. I enjoyed the wordplay. So we're keeping it which six will it be? But I also like the facts. So that's great. All right. Each guest is going to get two questions. If a total of four of the six are answered correctly, we will make another $50 donation in a listeners name. In fact, carry might be paying that man, but we're gonna make a $50 donation to sparrows in elicitors name. Alright, so here we go. Which six will it be? next year? We're going to rename this sucker and we'll go from there. Alright, carry on. We're gonna start with you. The distinction? I know pressure, right? The distinction between what is now known as Type One Diabetes and type two diabetes was first clearly made and published. In what year 1876 1906 or 1930? Things quizzes
Unknown Speaker 28:20
I totally didn't study on. I'm
Unknown Speaker 28:22
going to go with,
Kerri Sparling 28:22
would you say 1936?
Unknown Speaker 28:24
Was that the last one?
Unknown Speaker 28:26
That's the one I'm using.
Unknown Speaker 28:28
Right? Correct. All right.
Unknown Speaker 28:30
Stacey Simms 28:33
Question number two, Scott. This is for you. Insulin, crystallization improved its purity and opened the door to the time action profiles such as extended insulin in what year was Insulet first crystallized? 1926 1946 or 1976?
Unknown Speaker 28:49
Scott Johnson 28:51
I'm gonna save the middle. The middle option.
Unknown Speaker 28:54
Stacey Simms 28:55
sorry. It's not 1946 it was 1926 Wow. Okay. 26. Right. Okay. Okay, Bennett, this one's for you. In what year did Eliot Jocelyn published the first edition of the treatment of diabetes at 96 1916 or 1936 96? I'm sorry, that's incorrect. 1916 is the incident we're
Bennet Dunlap 29:21
dragging the team down. We're just
Stacey Simms 29:24
which is kind of crazy because the you know, insulin wasn't commercially available until 1923. But that was when it was first published or carried
Unknown Speaker 29:33
Stacey Simms 29:38
When was the When was the first successful pink I've lost all control. When was the first successful pancreas transplant 1946 1966 or 1986. I'm sorry. Oh,
Unknown Speaker 29:51
Stacey Simms 29:53
that's right. Also could have been 1967. I guess. We got out When was the first wearable insulin pump invented? 1956 1966 or 1976. So,
Scott Johnson 30:08
so I'm thinking about, like my mind is, is saying, define wearable? And I'm picturing that. That photo. We've all seen of that guy with that gnarly backpack.
Stacey Simms 30:22
Oh, yeah, no, I don't you know what I have to, I'd have to check my notes. But I was talking really slowly there when I said, 1970s. I'm gonna
Scott Johnson 30:32
say 1976. Then
Stacey Simms 30:37
very nicely done. And I will, I will look that up and stick it in the show notes. Because I was thinking of the backpack guy too. Yeah, that's crazy. But I'm not quite sure what they I think by wearable they mean, like wearable with that behind your back. Portable, maybe even more so than that. Okay. And Ben at our last, I haven't been keeping track of who got what, right. 123 Bennett? When was NPH insulin released? 1946 1956 or 1966 56?
Unknown Speaker 31:05
Stacey Simms 31:10
I'm sorry. 1946. I should have I should have been a little bit more clear there, too. Okay, I think you guys got to share two and a half.
Unknown Speaker 31:20
Bennet Dunlap 31:22
This is the sixth quiz. And the only ones that count her from her because her podcast is six until me.
Unknown Speaker 31:28
Yeah, but I only got one, right. And also, I don't have a podcast.
Stacey Simms 31:37
I think we just need to move along. And we will make the $50 donation to spare rows. And I might give you each $50 to not have this.
Bennet Dunlap 31:45
So I think what's important to take away from this is the diabetes is hard. Even the history is hard.
Stacey Simms 31:53
And the numbers are always hard. It's not
Bennet Dunlap 31:55
just a numbers game.
Stacey Simms 31:58
Oh, my goodness. Well, thanks for playing along with that. That was quite ridiculous. And it was hard.
Unknown Speaker 32:08
Oh, you're so positive. He's the nicest. Okay,
Stacey Simms 32:14
so next year, which six? Will it be will turn into something with seven, but we'll figure it out
Bennet Dunlap 32:20
studying next year?
Stacey Simms 32:21
All right. It's kind of goofy. But it's all for a good cause. And I wish you all so well, this year with spare rose, I know it's gonna be a really big success. And it has been for the last few years. Anything else that you all want to add any other places that you're going to be appearing?
Scott Johnson 32:36
Well, I think Stacy, we we really want to thank you for helping spread the sparrows message that's really great of you and will go a long way towards helping the cause. And we really, really appreciate that. So thank you.
Unknown Speaker 32:50
Kerri Sparling 32:51
I'll echo that. And also, I mean, I love that you you picked spare rose to kind of run with as far as raising awareness and raising some money. So I'm hoping that other organizations follow you're very, very good lead and and jump in with this. And it would be great to have people in the diabetes community and the broader patient community. Be part of this, this thing that's so important to us,
Stacey Simms 33:12
Ben, any last words?
Bennet Dunlap 33:13
No, not at all, at all.
Stacey Simms 33:15
Excellent. All right. Well, once again, thank you all so very much for joining me Carrie Sparling. Scott Johnson Bennett, Dunlap, I appreciate your time and what you're doing for sparrows, end of the diabetes community. It's always great to talk to you. And we'll be in touch. I'm sure that there'll be a lot more sparrows news in the next two weeks. Thanks for being with me.
Unknown Speaker 33:34
Thank you, Stacey.
Unknown Speaker 33:41
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 33:46
If you would like to help or find out more about spare arose very easy. Just go to Diabetes connections.com and click on this episode homepage. As I said, I'll put some stuff out on social and I will link up to Karis book and Bennett's blog and Scott's blog as well. For more information. I'm going to also link you up to renza. Should Billy his blog because she is really taking the lead now I'm getting the word out about spear rose. We've had her on the show for other issues as well. But she wrote recently that in the eight years the campaign is run, they've raised more than $261,000. This is not a big corporate campaign. This is individual donations from, as they say on PBS, people like you, but I mean all kidding aside, that is 52,347 roses, which means that a whole year's worth of insulin has been provided to almost 4400 children and young people with diabetes and under resourced countries. renza wrote, I still get goosebumps just thinking about that. And renza I share that sentiment as well. Thank you for putting that together. Thank you for continuing to bang the drum for sparrows and get the message out and thank you all for donating look very simple as they said in the interview and I'm glad we were able to have some fun with it. But it is such a small thing that you can do the chemic such a serious difference. So if you can please help. And sometimes helping is just spreading the word I understand that everybody has the resources to give or your money is already earmarked for things. If you can share the Word that would be awesome. Thank you so much to my editor, john Buchanan's for audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
Have you heard of Bolus Maximus? Behind that great name are two men with type 1 looking to bring new resources to the community talk about the tough stuff.
This week, Stacey talks to Brandon Denson and Matt Tarro. They share their stories and what they hope to achieve with Bolus Maximus.
In Tell Me Something Good, we have a few artists in our audience and some good news for the podcast.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Get the App and listen to Diabetes Connections wherever you go!
Episode Transcription (Beta)
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, the name caught my attention, but it's the people behind Bolus Maximus, who are looking to bring new resources and talk about the tough stuff.
Brandon Denson 0:37
Type 1 diabetes or the diabetes community in general, is a very, very tight knit community. But there's still a lot of work to be done. One of the main things that is going to separate us is that we're not focused on pulling you out from where you are. We're more focused on coming to get you from where you stand.
Stacey Simms 0:58
That's Brandon Denson. And he and Matthew Tarro, the creators of Bolus Maximus shared their stories and what they hope to achieve here
in Tell me something good. We have a few artists in our audience. And hey, a big honor for the podcast. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I'm so glad to have along. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I have to tell you I'm taping this episode a little bit more in advance than I usually do. Because as you're listening, it's last week, we took my daughter to college, as I'm taping it is this week, and the plan is to take more time than usual. I mean, nothing is usual this year. But as I shared in a previous episode, we're far from this college. This is an 11 hour road trip we normally would have flown but with things being how they We are driving, and we have to stay because every college is doing this a little bit differently.
Her college is testing the students upon arrival for sequestered in a hotel. And then when they get their negative COVID test back, they can move in and you have two hours. I think that's the window to move her into the dorm. So I'm kind of thankful she's a sophomore this year. I was so nervous last year when we moved her and not just about she was leaving, but are we gonna have time? Are we gonna do everything right? And what about making up her bed and she didn't need any of that. But you only recognize that in hindsight, so if you haven't moved your freshman college student in yet and you are doing that, as you're listening, some point in the future really will be okay. They really don't need you there. You really don't need to do a lot.
My husband did move some of their furniture around. I mean, it was very limited what they could do, he did help with that. So he is the one moving them in this year. I will not be going for that two hour window. But we're all going together. I will report back I'm sure if you follow me on social media. I'll be talking about it as well. I don't have any words of wisdom about schools this year, Benny, who's my son was type one, he is going to start the school year virtually because his whole district is going virtual. And you know, we'll see what happens. I am optimistic that next semester will be in person. But I don't know why I'm optimistic. There's no signs that point anything changing, demonstrably. But I'll keep my fingers crossed.
All right, a lot to talk about this week, I reached out to the guys behind Bolus Maximus, because how could you not with a name like that? I saw them on Instagram. I thought What are they doing? And I found out and I'm going to share that with you in just a couple of minutes. And this is an effort that is really much needed in our community and I think these are the guys to get it done.
Diabetes Connections is brought to you by One Drop, getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized tester plans plus you get a Bluetooth glucose meter test strips lancets and your own certified diabetes coach. Subscribe today to get test strips For less than $20 a month, delivered right to your door no prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one fake get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the One Drop logo.
A couple of weeks ago I attended I guess attended in quotes the virtual friends for life conference. And one of the topics that came up just in the conversation we were having in the equivalent of the hallway, right? We're just talking to other parents and other people with type one diabetes was men with type one and dads have kids with type one. How come there aren't more forums and places for those people to talk amongst themselves. And you know we kind of batted that around for a little while you know guys don't want to talk and you know they keep it to themselves or they want action. They don't want to talk about feelings and we've had the the dads and diabetes podcasters on the show. I think they are a great resource. There's lots of episodes I've done with men, certainly who live with type one, but just a place to like knock issues around and forums to do that.
Well, that's what Bolus Maximus is all about. And yes, we will talk about that name and how it came to be. And if you haven't guessed you might be right there several reasons and things behind that name, which was fun to kind of tease out of them. So who's behind that? Well, Brandon Denson is one of the pair here. And Brandon has been on the show before he was diagnosed with type one as a high school senior, and he really wants to play college football. He joined the Michigan State football team. He earned a full scholarship there. He's a walk on and he earned that scholarship to play at Michigan State. He's played professionally and he has also been on American Ninja Warrior. Again, I'll link up our past episode with Brandon. The other half of this pair is Matt Tarro. He was diagnosed with type one in 2002. his sophomore year in high school and he will share that story in the interview. He works at tandem diabetes and one of the things that comes up when you Google Matt of like Google, everybody I talked to because I'm very nosy. One of the things that comes up is this column he wrote for beyond type one called the guy's guide to type 1 diabetes. And I will link that up as well, because as I said, There just isn't a lot of stuff. bullous Maximus has weekly discussions, they say talking about the tough stuff. And I should mention, it really isn't just for guys, I know that they're trying to walk this line here. I think they're doing a very good job of it, that these resources are mostly for men. But there are many chats where women are welcome because they really want to hear all perspectives. I will let them explain more. Here's Brandon and Matt and Bolus Maximus,
Brandon and Matt, thank you so much for joining me. Welcome to the show.
Unknown Speaker 6:41
Thank you. Thanks for having us. Yeah, appreciate it. Stacey. Thanks.
Stacey Simms 6:44
Alright, so I've talked to Brandon before, but I haven't met Matt. And before we jump in and talk about Bolus Maximus, which by the way is fantastic. Let me just ask you, Matt, What's your story?
Matt Tarro 6:57
Thanks this Yeah, I appreciate that. Thanks again, for for having us on today. So I was born in a small state of Rhode Island, East Coast. And I've migrated out to the west coast now after years of working in digital advertising. I started it, you know, Time Warner and ended at Snapchat. So wow spent, I spent a career in digital marketing and advertising. And now I work at Tandem in San Diego. So I've been out here for the last 10 months and for the release of control IQ. And so it's been awesome to be here and working in that space now, doing something that I truly enjoy. And we'd like to do. When were you diagnosed with type one I was diagnosed is a sophomore in high school. And 2002 and I was 16 years old, living in Rhode Island, going to high school, swimming, you know, doing the normal stuff that I was. I played a couple sports growing up but I really just focused on swimming. So while I was playing When I was diagnosed during that season,
Stacey Simms 8:02
we're able to turn around and get back into the season.
Matt Tarro 8:05
Yeah, yeah. And that was something that was Yeah, that was really cool. There's another guy who was diabetic on the team. So I felt kind of comfortable getting back in there. And 16
Stacey Simms 8:13
were you driving? Did you do remember wondering if that kind of stuff was going to continue for you? I mean, it sounds like you went right back to things pretty easily.
Matt Tarro 8:23
Yeah, I did. Mostly because I felt like there was a need to do it. I think the delivery when I was diagnosed from my parents and the educators was that this is your disease. You can choose to live with it or not. I did tune out I mean, I don't want to sound like oh, yeah, took care of that. It was really easy. But we never really easy it just really no, true. So I came from medical family and my background. I wasn't going to go to medical school. But my background, you know, in my family's background was was medicine. So For me, I heard that every day at the dinner table it was always around my house. And it wasn't specifically diabetes, but it made it easier to deal with such a difficult thing. And yeah, then I then I started getting used to it.
Stacey Simms 9:16
Yeah, and Brandon, we as I said, we talked we talked for an episode a while back and you were diagnosed as a high school senior. Gosh, and then you but you went on to play football in college and then professionally, how are you doing these days? How are you keeping busy during an active physically during a time when we're all supposed to pretty much be staying in and staying by yourself? Yeah, it's been
Brandon Denson 9:39
it's definitely been challenging. You know, it's been a while since the last time we talked a lot of things have changed. The good worse in for better, but, but I would say just with staying active and walking a lot in always on the blades. You know the blades is I find that you know my for cardio versus running or anything crazy like that. So that's kind of homestead stand fit trying to Anyway,
Stacey Simms 10:09
when did you start? I'm assuming this is rollerblades. Pardon me. I'm an old lady. When did you start with rollerblades?
Brandon Denson 10:15
Man I started rollerblading. I actually let it people don't know I actually used to play roller hockey going on my brother. But by far you know I'm from if somebody Michigan but Metro Detroit, Detroit is not that far from where I grew up at. And I was a huge Red Wings fan. So Steve Iser, me and Chris, I'll tell you, all of those guys, I grew up watching those guys. I never played ice hockey. But I have I definitely have a passion for hockey. And also definitely roller hockey for sure.
Unknown Speaker 10:50
Alright, so tell me what Bolus Maximus is all about. Let's start before we get to the great name. What's the need here? And Matt, let me ask you what what did you two ideas defi as the need that you could fill,
Matt Tarro 11:02
when Brandon and I started to connect, it was through Instagram. And we started to communicate because I was volunteering for a nonprofit. And I didn't see what I wanted. So I didn't see somebody that I thought I should be working with President. And so I felt like I had to go out and find that person. And that search led me to Brandon Denson, because he displayed himself in such a way that it was easy for me to go, yeah, him, him and I will get along, put me in a room with that guy. And because of our personality, we're extremely outgoing. We're very charismatic, personable, and just happy individuals. It doesn't mean we don't have bad days. We learned about those bad days from each other through the conversations we started to have. And so this whole relationship really grew. From 2018 the first time we met after, you know, just kind of here in there, the diabetes space to like how many people have you met in person randomly? You like, Oh, yeah, I remember you from so so I wasn't that involved. So I never really had a chance to meet Brandon. And then by the time I did get involved, he was like the person that had to meet. And I'm glad I did.
Unknown Speaker 12:23
Yeah. So then Brandon, let me ask you. So what is the need, then that you guys are getting together? You're helping each other you got good days together bad days together? What what needs are you looking to fill here?
Brandon Denson 12:36
So So I think it's something as simple as if we thought that we needed that. Why wouldn't other people need that as well? Why wouldn't they need somebody to talk to? Why would they need somebody to engage with why would they need somebody to help them do their highs and lows and lift them up? We all go through the same thing we live with live with diabetes is stressful. It's a 200 to 365 24 hour a day job seven days a week. And you know, it can be very, very tough. Like, I know your son has it and I'm sure you know, you're his rock, you know, at the end of the day when he needs you or you need him, but you know, to have a community we wanted to establish in the community that we're here for everyone living with with diabetes, obviously, yes, a focus, we'd like to focus or we begin to get our focus with males. But you know, as a male there not a lot of knows that come on in this space, and I'm just gonna be completely transparent about it. The women are winning. They're winning down, you know, because they're, they're not, they're not and I wouldn't even say from a male perspective, a shame to show it. I think that men sometimes they wear this badge of honor that they don't have, you know, they don't have to let this worn out. It's okay to let that worn out and talk about the ups and downs that you're having living with diabetes. It's nothing to be ashamed about. You know what I mean? Doesn't matter if you're black, if you're white. If you're old. If you're young, none of those things matter, we just want to give a safe space. So people feel comfortable. And that's what we're starting. But we'll be working on a lot more things than just kind of bridging that gap in the community to cover everyone.
Unknown Speaker 14:13
Tell me a little bit about what you're trying to do, because this is such a huge challenge. As we've said, Men don't really like to talk about stuff to begin with, which is why there aren't more resources like this, it seems What are you doing to kind of help them
Matt Tarro 14:30
showing up in their space and being loud about not being quiet? And I think it's important especially now with what's happening in the United States and around the world to use your voice where you see fit and this for Brandon and eyes, but after we first met, really Hey, man, we we just communicate better with each other than we have with other people. So I was driving around I had you taken some road trips around the western part of the United States, and I was on the road for like four or 567 hours at a time. And I would use chunks of those time to call Brandon. And then we would have conversations while he was on the East Coast after work, and I would talk his ear off while I was like, I need somebody to help me stay awake. But like, we got a lot of stuff out and talked about a lot of different things where we, we understood how similar the need was, regardless of where we came from, how we were raised, who our friends were, or what we were taught, the needs still remains its support, and you need someone to show up and tell you that they're there for you to to help you.
Stacey Simms 15:44
So what do you actually what are you doing with bullets? backspace. You mentioned some zoom calls. You mentioned some other ways you're trying to get guys to kind of reach out because right now nobody's doing anything in person, but you're able to communicate. Cool.
Matt Tarro 15:58
Yeah, yeah. I mean, I So we've started with zoom calls, because obviously that's, you know, everybody's family. And that's how everyone's communicating. And we saw it as the easiest way for all of us to get together. And then we've been using Instagram and Facebook as a platform to start to advertise. And we've really been feeling it out. But that we knew, like I said, what we were talking about as far as a knee A while ago, sorry, my dog is encroaching on my space.
Unknown Speaker 16:30
That's what zoom is all about. I wish we could show that on the podcast.
Matt Tarro 16:36
He He's Yeah, he's usually with me. But so. So the, the idea was, you know, let's, let's start with zoom calls and put people in a position just to open up and see how that goes. And to say it's been rewarding as someone who knew that that was a need. And they're like, hey, let's try this. It's been great to see the reception. So we're going to start There, but our idea is to is to go and travel and find people in places that maybe they thought they, they had nobody coming to see them. So small communities, and then underserved communities, most importantly, the places that other people haven't been. And for whatever reason, won't go. So we feel like that need is a lot larger than just the male communities need to be addressed. So if we start with men, and we can address them, then I think we'll be able to, to start to maneuver our way around it to some different communities and make an impact
Stacey Simms 17:40
and branch it you've already had some experience with this, I would assume just because when you've been at conferences in the past, you know, people want to talk to you about playing football. And I'm sure you've been looked at as a role model. What are a lot of the things that that guys whether they're teenagers or adults with type one, I'm curious, like, what do they ask you about, you know, what are they curious about?
Brandon Denson 18:00
Um, to be honest, I like to, uh, after I speak or anything like that, or engage with anybody, anybody or share my story, I just say, you know, all bets are on, you can ask me about school, you can ask me about football, you didn't ask me about culturally how I came up with diabetes, you know, I don't really hold back from anything. And you know, I think when you when you kind of say like nothing is off limits, and that's kind of when the teenagers get DAX, and questions. Some of them raised some questions about girls or what should I do? When I play sports? What should I do on my pump? Do you wear your palm? You know, what teams have you played for? Things like that, but you know, I use my you know, I just try to use everything that I've been through, you know, as something to share, like, what would I be if I wasn't able to share that story? Yeah, maybe my story isn't this glamorous story like I you know, I had to walk on at Michigan State. I didn't What I was going to do when I when I was first diagnosed, but I knew deep down in my mind that I could still do everything that I set out to do. And you know, I wasn't going to let anybody in, especially diabetes get in the way of that. So I think when you're talking to individuals, whether they're 40 years old and just got diagnosed, or they're 12 years old, when you can share that story of everything that they that they're going through, or going to go through or have already been through that connection is, is unexplainable, you know, is is something that's very, very remarkable.
Matt Tarro 19:30
And I think just just to add to that, our ability to cater to different age groups, you know, just through conversations is something that Brandon and I discovered about each other, he, him and I both have shared a lot of experience working at camps. And then we've got backgrounds working with kids in general, right through camps in school programs. Riding on insulin now. We've both been coaches for writing on insulin camps, you know, at the same time on different parts of the country and that that's a really cool part to know that there's somebody else. At any given time, who you feel like you're connected with, we want to give more individuals that opportunity to feel like that.
Stacey Simms 20:13
talks to me about the name, I think people people think of the movie Gladiator, right? They think of Maximus or you know the name of the general or maybe it's maybe it's just large I don't really know. So we're just polis Maximus come from
Brandon Denson 20:29
you, you must be in like both of our heads.
Unknown Speaker 20:34
Like that. I like the way you broke that. Yeah.
Matt Tarro 20:39
And I appreciate you presenting it like that without us ever talking or like mentioning it to you. So to reference that movie, that is a perfect example. That was personally a favorite movie of my father's love growing up. So when when I would understand what people talked about as being like a man for some reason, like all these Other images kind of fade out and then this is like Gladiator looking dude standing there with the with the wind with a sword. He's like, Who's asked, we go on a kick. And so that mentality is, you know, as a diabetic, something that you would want to carry around. It's it's almost impossible though, to always be that person in this day and age. You can't be the big bad wolf all the time, yet you have feelings, especially as a man. And so there's a play on that to be certain. The easiest way to explain it is Brandon and Matt is Bolus Maximus bnm. And there's a max bolus setting on a pump, which is a real thing. 25 units, it's the most amount of insulin you could take at any one given time. And so you should put the maximum amount of effort into your diabetes at all times. I knew my high school Latin would pay off.
Stacey Simms 21:51
That's really funny. I mean, that's a wonderful explanation. I love it. In that movie, I can see that I can definitely see you as a kid, which kills me because I was a grown adult when you're away from having my first child when that movie came out in 2000. I just looked it up while you were talking. That's what happens. We're all the same age on a podcast. Yeah. But I love that because it's really, it really gets a lot of different points across. So what's your dream with this? And I know you're working together. But I'd like to hear from each of you, you know, you said when we can, again, traveling, getting in front of lots of different people who are totally underserved right now. And I think that's so needed. But it just sounds like this is a big project that you hope will will continue. So Brandon, let me let me start with you. You know, what do you really hope happens here? What's your big goal?
Brandon Denson 22:48
Like you said, it sounds like a big project. But at the end of the day, you know, Rome wasn't built overnight and there's a lot of holes and gaps in you know, in the diabetes community. And when we say community we mean community as an everybody as a whole. No matter where you're from, no matter what you look like, no matter your culture, none of those demographic, none of those things matter to you. The only thing that matters is that we bleed the same color. And we go through the same ups and downs. When we speak of the community, though, I think the main goal is to bring the community even tighter. I believe that the type 1 diabetes or the diabetes community in general, is a very, very tight knit community. But there's still a lot of work to be done. One of the main things that is going to separate us is that we're not focused on pulling you out from where you are. We're more focused on coming to get you from where you stand. And that's something a lot of organizations don't do. They expect everybody to come to them. And you know, like I said, it's a lot. It's a lot of work. It's even a lot of work up to this point. We've This will be our 10th week, hosting costs. But we understand what people get from those calls, you know, and it's, it's one of those things, we've gained that momentum, and we're going to continue to gain momentum. But there's going to be a lot, a lot more legwork that has to be done. But we're willing to do the end goal is to make sure everybody in the community has a safe place, not only just to be inspired, motivated and educated around diabetes, but they feel that they're a part of this.
Matt Tarro 24:35
In reality, when I look back between 2017, late 2017, around 2018, when Brandon and I started talking and the end of 2019, so almost like a two year time, end of 2017 to end of 2019. I traveled a lot around the western part of the United States. I would leave Los Angeles on two to three weeks with my dog and we would go out camp Every night and go to places we had never been to just learn about how to interact with people that you've never met before. And that how can you appreciate what they do different from where you grew up, and how you've lived. So after the years I spent on East Coast, New York City, Boston, I was there was an easy escape to get out to Montana in Nevada or Washington, Idaho. Some of my my favorite places are all in the states I've only been to in the last few years. So we're intending to go back not only to those places, but everything east of it, and start working our way into the communities to help bring people to places they've never been. And then to bring things to people that they've never seen.
Stacey Simms 25:45
Brandon mentioned, and you both mentioned the zoom calls that you've done, which I know isn't exactly the way you thought to kick this off, but we've all kind of had to adjust over the last couple of months. Do you mind me asking what you talk about? Are there particular topics that have come up
Matt Tarro 26:00
Our Our idea was that hosting calls was creating the safe space that Brendan mentioned before. So for us having topics that require the safe space, were obvious.
Stacey Simms 26:15
Matt Tarro 26:16
Some of the things that we talked about during May was we had an opportunity to bring Mark Ayman and who, you know, is working as far as mental health is concerned during Mental Health Awareness Month, in a space that we asked him to come partake in a meeting, and he said, Yes. And that was awesome.
Brandon Denson 26:38
Because we got to grow to two females that were able to join. They reached out to us to make sure it was okay. Of course it's absolutely okay. If one of them was actually from South Africa, yeah. So,
Matt Tarro 26:52
so we we, you know, we probably could have made this clear in the beginning. While we do host calls for men, they are open to everybody. We spoke the
Brandon Denson 27:01
last two weeks. In regards to caregivers. That was a really huge topic that we saw. And we got a lot of feedback from in regards to caregivers joining and then also people sharing their stories about about their caregivers. We had a guy put his name out there, it's I don't know if he wants me to reference him, but he has a six year old son. And it was awesome to hear from him, you know, the things that he goes through, but he also invited one of his partners, a buddy of his and in the duel between that Father Son is unique because they both have type one diabetes, which I thought was amazing, but for him to come in, to get, you know, to listen to other people in the caregiving realm and you know, also be able to also be a caregiver for himself, but then also his son. You know, I think there's a lot of weight on that. So with that,
Matt Tarro 27:59
yeah, there's So caregivers, we've also talked, we did a couple of things in the beginning when we first started to host the calls that were more of skill shares. So hey, let's have the room, there's a soapbox in the middle of it, you want to stand on that you tell me you can. And it's not us making judgment or anything, whatever you want to bring to the group. So we had guys talk about graphic design, we have individual works with writing on insulin, who had a lengthy journalistic successful journalism career. And so that type of stuff really brought a different element. We talked about art, talked about different styles of art. We talked about movies, we did movies and music one week, you know, guy stuff, but in reality, that is also a way for us to bridge the gap between a difficult conversation, which we spent two weeks having, how to approach difficult conversations. laughter. You know, things really took a turn for the world. In the United States, after the death of George Floyd, and it's not something that we wanted to just bring people into a room and go, alright, let's talk about it. But that's actually what we did. And it was two of the best conversations to date. Yeah,
Brandon Denson 29:15
I'll say, I'll say hands down. You know, I think you never want to jump in, like, you know, and kind of discuss the things that are going on around the world. But the things that are going on around the world and in the United States affect us directly. Was it the easiest conversation probably to open up? and not so much was everybody willing to share they did, you know, and that was very, very important because, you know, you have different cultures, different races, not looking at it from a different perspective and only seeing it and then you have people saying that they're going to work to do better. And that's all we ask. We just want better, you know, better, better, better in sports, better in school better in the community and ultimately better with diabetes better But,
Unknown Speaker 30:00
you know, and
Brandon Denson 30:02
I do think it's it's so important because we, so many of us are worried and nervous to talk about race. I mean, let's just put it on the table. I've had these conversations before. There's such a lack of diversity at diabetes events and on panels. And, you know, I'm always so grateful that when my son was diagnosed, I could go to a conference and see people who looked like him. And no, people had the same traditions were Jewish. I met people right away that had the same traditions and background as us. And so I know it's so important when people, people who are black people of color to see people who look like them. It's as simple as that. But it's so hard to talk about, right? We don't want to say something stupid. We don't want to say the wrong thing. Yeah, and I think that's, you know, you hit it right on the head, you know, that's, that's a big, a big hole in itself. You know, I was a volunteer for jdrf for 12 years. And then I also was a worker for close to two years. And you know, you see this this big, get caught within the workplace outside of the workplace, and you see that nothing has changed, you know, nothing has changed. Like nothing me, I'm comfortable talking to anybody. But I can't say that if I took one of the kids that I knew from the school in Detroit that had diabetes, and I took them to jdrf event that they will feel comfortable there, because they wouldn't, you know, I'll be lying if I said that, that they would, or I took them to another community event and to say that they will feel comfortable, they will feel left out because nobody is interacting with them. Like they need to be interacted with, you know, and that goes a long way. You know, I didn't have somebody when I was growing up to talk to about my diabetes, cannot sit here and say that I may be needed someone. Yeah, I could probably say that. But at the end of the day, I knew it was my disease. I knew what I had to do. Everybody doesn't have that mindset. So you know, we want to make sure we create that space. No matter how old you are, what you look like, where you're from your culture. None of those things matter. Because we just want to help you do better in whatever it is that you want to do better.
Stacey Simms 32:04
Well, I appreciate you addressing it. I want to have a difficult question for the two of you, you have big goals. It sounds like when we can move around the country again, you want to get right out there. How are you paying for all this? What do you need?
Brandon Denson 32:19
actually gonna see if you will sponsor
you know, in a band, we'll put the logo on the side and we you know, a we will put the animated character on there. We were completely fine with that, you know, so, you know, we have a lot of work to be done as far as forming our our nonprofit and things, things of that nature. Obviously. Any nonprofit getting started from ground zero, takes a lot of work. This is grassroots, you know, but understanding the process of everything and what the process is going to be. As we look as we try to complete things they'll never be complete. It's never complete over the never be complete. And we understand that but we know that the steps to make it great are really rely on us and our board members and and, and everybody in the community.
Matt Tarro 33:14
Also we are offering videographer and photography services at a super good price in San Diego, Los Angeles. That's real because that's what Brandon and I do. And that is the type of thing that we would use to help fund this project. The easiest way for us to get information back and experiences and share experiences is to tell story and stories, many of them as many as we can. And the idea would be to do that through video and photo and to go and do that. Now. I've been doing freelance work for a couple years now. It is super inconsistent. If you get a couple of good gigs and you can, you know, put your best foot foot forward and get some more work based on it. That's what we're looking to do is is to have people see what we're already doing. We're making a lot of strides in the right direction. And I think, if anything, you know, we're going to work on our nonprofit, you know, getting everything set up, but at the very least, if we want to plug anything, it's the fact that Brandon Knight take really good photos and video, and we'd be happy to do it for anybody.
Stacey Simms 34:26
Matt Tarro 34:27
Yeah. Oh, no, that was just my phone. Beeping.
Stacey Simms 34:30
Alright, just sounds like a Dexcom alert.
Unknown Speaker 34:34
All right, just checking the mom instincts kick right in. Okay, but so it sounds like you're gonna set up a nonprofit. You're but you end and Matt you already work at Tandem?
Unknown Speaker 34:45
I do. Yeah. So that and so.
Unknown Speaker 34:47
Okay, but I guess my question is, so tell me more about the photo and video. Is this a business you guys have as you said freelance kind of on the side?
Matt Tarro 34:55
Yeah. I never planned on even saying that on this call. We just We know that that's something that the both of us do in our own worlds that Brandon and I have operated in, you know, independently for the last 30 something years, we've put ourselves in a position now, to be in the same room with a bunch of cameras, drone tablets, I'm hosting some gallery space downtown San Diego. That's, that's what I was doing. And that's where a lot of my focus event. So for me, it's been everything, like just find what it is that you can do really well and that other people might like you to do for them. And that's been photography for me for a while. And so I've got photos and art up in there, we've created some art, we've got some t shirt designs. So the ideas have just been flowing every time we talked, like cool is another page in my notebook full. Well, I really, I've got you know, I've got a pretty good sized chunk of pages already full in that notebook of ideas, the direction we'd like to go and then reminders to ourselves about why we're doing that. Miss.
Unknown Speaker 36:01
I'm so glad to learn more about this. I'm looking forward to see what you guys accomplish. You know when, like I said, when you can get out and about but even before that, it sounds like you're already feeling a great need. I really appreciate you coming on and sharing it. I hope you keep us posted. We come back on and talk about it.
Matt Tarro 36:16
Most definitely, we definitely we're honored to do so.
Stacey Simms 36:19
Thank you. Very cool. Thanks again.
Unknown Speaker 36:27
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 36:33
Lots more information at the episode homepage go to Diabetes connections.com. The episode should pop right up it's on the main page. Otherwise you can use the search box as well. We have a very robust search. I like to mention that all the time because there's a lot to go through especially if you are new. Tell me something good coming up in just a moment. But first diabetes Connections is brought to you by g bulk hypo pen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary and that's rich evoke hypo pen comes in Jeeva is the first auto injector to treat very low blood sugar. GMO cocoa pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it, you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the G folk logo. g folks shouldn't be used in patients with pheochromocytoma or insulinoma visit g fo glucagon comm slash risk.
Tell me something good. I was really pleased and kind of surprised to find out that we have several talented artists in our Facebook group. Suzanne shared that she finally made time to work on my art. I've missed my pencils she wrote so I asked her a little bit more about it and she shared a picture. She's a portrait artist cartoon and realistic and a graphic designer. She's been type one since 2004 but she had gestational diabetes two times prior to that. She says she's been on the pump since 2006. Her dad lives with type two. And her grandfather and his cousin lives with type one and you can see an example of Suzanne's artwork at Diabetes Connections. The group on Facebook thank you so much for sharing that. It's just beautiful. And Callie nordgren who I've known for a long time just online you know, it's part of the we are not waiting community. She said I sold a painting and that's the calling posted when I asked her tell me something good stories like you know, oh, we'll do that sold the painting. So of course I had to ask her to share more. And she does watercolor paintings. She said sometimes people ask for specific painting. Sometimes they purchase one that she's already done and she posted one which is just beautiful and she has a Facebook page as well. And I will link that up. Calling son was diagnosed with type one at one year old, very tiny, maybe 1112 months old, and he is now a happy healthy tween and Colleen and Wes are a huge part of the we're not waiting community but I didn't know calling painted until now. So thank you for sharing that. And I have a Tell me something good. And that is that the podcast Diabetes Connections has made the top 10 for health for the fifth year in a row for the podcast awards of the People's Choice. This is a podcast award for independent podcasters. Right. No NPR, not the big Corp casters, not the ones that have 25 people working on a show. This is for the independent podcaster like myself, and I am so excited to make this list. Again. It's just a thrill. They will vote on the final winner each category. I believe that comes out in September. I never expect to win that. I mean, we are a tiny little operation here, but it's such a vindication. I don't know if that's even the right word. But you know, we work really hard on this show and it is a labor of love. It's also a commercial enterprise. You hear the commercials during this show. Man I work really hard on it and to be recognized by my peers like this by my listeners who nominate Thank you all so much for doing that. It really, really helps. It's really important to me and I'm really excited to have made this list again, when we when I don't know maybe we've lost some really interesting podcasts before my favorite was the guy who puts you to sleep. He has a podcast where he literally is boring and drones on and whispers and you go to sleep to that. And you know if we can lose to that, hey, what am I going to do? I can't compete with that. If you haven't told me something good story posted in the Facebook group, send it to me, you can always reach out Stacy at Diabetes connections.com and tell me something good. Diabetes Connections is brought to you by Dexcom. When you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years. But when it hit us at full force a little early. I was so glad we had Dexcom Benny's insulin needs started going way up around the age of 11. He's grown I don't know how many inches since he was 11 years old at this point, probably eight in the last couple of years. Along with the hormone swings. I cannot imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system. We can react more quickly to highs loz see trends and adjust insulin doses with advice from our endocrinologist I know using the Dexcom g six has helped improve Benny's agency and overall health. 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. To learn more, go to Diabetes, Connections comm and click on the Dexcom logo. As you listen to this episode my kids are back in school if all has gone well we have dropped me off at college Benny has started school as you're listening this is scheduled to air the day after he starts school are virtually at home. I offered to make him like a homeschool virtual school nook in my house right I see all these beautiful pictures that people put on Pinterest and Instagram and their their kids desk is nice and it's like twinkly lights and a pillow or a little thing that says you know learning is great or whatever. And of course I wasn't serious because we don't do any of that were terrible parents and Benny laughed at me and said Please leave me alone.
Unknown Speaker 41:57
So if you've got
Stacey Simms 41:58
some interesting stories About your child is going back to school. And I think we all do. I'm not trying to make light Look, I know it's a serious situation. But I have only control over a few things. And that's what I'm going to concentrate on, on what I can control in my house with my kids in my community. And beyond that all we could do is vote diabetes wise, we're kind of in a groove. And with the weirdness of school this year, I don't see that changing too much. Of course, he's gonna be getting up earlier than he has since March. But other than that, I mean, we went on control IQ in January, he went off the receba and you can listen back if you're not familiar with our whole story on that he went off the trustee but in May and his blood sugar's just are great right now. Time and range is up, agency is down, predicted agency is down. I'm really really happy his independence is still really up. He's still a doofus and makes mistakes because he's a human being. And we're still compiling more world's worst diabetes monster. every couple of weeks we have a new one. That will never changed. Thank you to my editor john Kenneth from audio editing solutions. Thank you so much as you Listen, I'm Stacey Simms. I'll see you back here next week until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
In mid-March, the folks at Eli Lilly held a conference call for diabetes writers, bloggers, and podcasters. The call was to talk about Lilly's participation in the new Part D Senior Savings Model, as well as general updates about our insulin affordability programs.
After listening to some of the remarks, Stacey asked about the price of insulin and suggested a bold way forward. You can listen to what she asked, and the response here. Transcript is below.
Please note: there were many other advocates on the call - this excerpt only features Stacey's question but she was not the only person pushing for change. In particular, Amy Tenderich of DiabetesMine was also vocal about lowering the price of insulin.
Links to insulin assistance programs:
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:06
Hey everybody, welcome to diabetes connections. Although this isn't really going to be show today. This episode is more like an audio excerpt. I'm Stacey Simms, of course, and we will have a regular episode with all of our usual segments dropping as soon as later today, or more likely tomorrow.
I debated putting this one out. The production quality isn't exactly as it always is, because I'm doing a quick turnaround here. And it isn't usually how we do things, but I think it's important.
So here's what happened on March 16, the folks at Eli Lilly held a conference call for diabetes writers and bloggers and podcasters. The press release said during the call, you'll hear more details from Andy Vicari a leader on the Lilly diabetes insulin team about our participation in the new part D senior savings model as well as general updates about our insulin affordability program. grams. That was the PR quote, these calls are rarely groundbreaking. They do them sometimes they'll put out a press release that says largely the same thing. But they do give you the chance to speak directly to the people who help mold the policy. And I do try to join when I can. I am so glad I did this time.
The PR team welcomed us and told us that in addition to the planned remarks, Mr. Vicari would speak to the company's response to the Covid 19 situation. It became pretty clear though, that this really just meant he was going to go through the already published ways to get coupons and use the Lilly call center, you know, that kind of thing, which I will link up in the show notes along with other ways to try to get a break on insulin prices from all the manufacturers. If you're a regular listener, frankly, it is the usual stuff as far as I know as of this date, which is March 30th 2020. Nothing substantially new has been announced.
It's important to note and you'll understand why when you hear the audio From the call that I'm going to play, when you hear my question, there have been no widespread reports of people not being able to get insulin. There isn't a supply problem. I asked a little bit about that, because I had just been contacted by a woman whose local pharmacy wasn't carrying what she needed. But that was a local situation, and as far as I know, has since been resolved.
When it became clear that they weren't really doing anything new for what is an unprecedented world situation, a world health crisis, I decided to ask another question. I asked the folks at Lilly, why not? Why not do something very bold, very different and really show us what they stand for. And I want to play you that Please come back around at the end for an important announcement about what you can do to make your voice heard on this issue. Here is the unedited version of that portion of the call. The gentlemen answering my question is, as I said earlier, Andy Viacari, senior director, diabetes US insulin brand leader for Lilly:
All right, I'm going to ask this question and I understand it might not be a very popular one. But, again, looking ahead to as you said, there will be things in place for people who are, you know, losing their jobs who are poverty level, that sort of thing. In a time of really what is very much uncertainty, understanding that people with diabetes cannot live without insulin, as you know, why not be a hero in the space and say right now, that Lily will cut the price of insulin to one level to $35 to $25. Why not let people fill prescriptions for whatever they are written for from their physician for a price that while would obviously be very dramatic, very different, would help people around this country feel better about the one thing that they are? I can't, I can't. I'm not exaggerating this, you know what we are in this community all of the people on this call one thing that people are devastatingly worried about, there are already reports of people who don't have insulin in their pharmacy. They're very, very isolated. I have no idea what brand they are. But this is something that's on the minds of everybody was type one diabetes and many people with other types. Why not consider something that dramatic, even if it's temporary?
Andy Vicari 4:32
Yeah, appreciate the passion and and some of the frustration in the question, I think it's important to acknowledge that, you know, what I can say from a human log standpoint. You know, similar to any other time, if we cut that price, could that disrupt the supply through our other supply channel partners that certainly we have contracts in place with them for a certain price so it would go beyond our ability just to cut that price. We would be having to negotiate with them. So certainly something that I think is feedback for us. I like the way you framed it. Why not? Maybe not the hero I think yourself and the folks that have any type of diabetes is the hero in this case, but we can play a significant role. What I what I will say is, we are constantly from a leadership standpoint, it's not a an overstatement to say, Mike Mason in our executive committee is constantly looking at for things we can and should be doing this time. So while I can't sit here and say it is something that has been considered and being planned, I think these conversations are further fuel for those types of interventions at a at a at an enterprise level. What could we be doing around this space? And it's important that I'll make sure that I continue to come back to my leadership, as we close this call and have those conversations What else could we be more vocal about? What else could we come out and announce to help people in this time and it may have all Just given the circumstances with the country and what's happening. So what what I can't promise you is that there'll be an immediate reaction. But what I can say is we're always looking at these things. And the steps that we've taken, the quickest way for us to do that would be with our authorized generics. Again, we have similar contracts the same contracts in place with our, with our wholesalers and with our pbms and payers, so we would have to be renegotiating with them, and they'd have to be okay with that. Now, you could argue that they they can and should be, it would be very difficult for them to say anything other than that's a good idea, but I can't comment for others in the supply chain. I know that's perhaps not the exact answer that you'd like but it's a it's a real answer on we are always considering these other options. And by cutting our price just automatically, we would put at risk those folks that are stable on our products with just not getting covered by the P ends and payers that have us on today.
Stacey Simms 7:00
I do appreciate the answer. I just think that - just a bit of an editorial statement, you know, a crisis is a time to define what your company is all about and what an opportunity, I really hope you guys consider that and let the pbms and the others say no, I mean, let's give them the chance to, to not step up to the plate. And let's see what happens.
(end of call)
But do you think will Lily take any bold steps? I know most of you are skeptical, but you never know. And as I said that was an unedited portion of the call. There were other diabetes bloggers and writers on the call asking their own questions that hat tip to Amy Tenderich of diabetes mine for seconding. My thought and backing me up and and pushing ahead on that too.
But what can you do? Is there anything right now to take action on Patients for affordable drugs. A group we've talked to here on the show before, has put out a call for all three insulin manufacturers to lower their prices right now, in response to this health crisis. There's a letter it is being released on Tuesday, March 31. I've signed it virtually, of course, and I would urge you to check it out and sign it as well. I'll link it up in the show notes and I'll share it on social media once it is live. Let's keep pushing on this issue. It is in times like these, that companies truly show us what they're about that big change can happen. And as Amy said on the call, that it's a time for disruption. It The time is ripe. So make your voice heard. Let's do what we can. I know a lot of you already, as I said are not optimistic, but we cannot give up.
Thank you for tuning in. Regular episodes are coming your way the next one will be out as soon as tomorrow. I'm Stacey Simms. Subscribe to the show on any free podcast app so you don't miss out or just come back the way you found this audio excerpt. Thanks again for joining me
Unknown Speaker 9:09
Diabetes Connections is a production of Stacey Simms media. All Rights Reserved all wrongs avenged.
Transcribed by https://otter.ai
Have you ever had a doctor give you a "wake-up call?" or try a "scared straight" tactic? These techniques - and a lot more - blew up on Twitter recently. Stacey noticed that it also seemed that the doctors andhealth care providers who weighed in weren't interested in listening to diabetes advocates online. What's the disconnect all about?
Full transcript below
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Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available on Amazon as a paperback ebook and audiobook at Diabetes Connections.com.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:26
Welcome. This is one of our mini episodes, shorter episodes that I put together starting at the beginning of this year, just when I have something to say, news to share or anything that doesn't fit in the traditional longer format interview show that we do every week that drops on Tuesdays.
I am your host, Stacey Simms, and I want to talk to you today about well, I really want to talk to your doctors about something, but we'll get to why and maybe how to share with them. I want to talk to you about what are doctors think of diabetes, and I don't really mean our endocrinologists Just to hopefully know what they're talking about and stay up to date. I mean, the other doctors that we see or we bring our children to pediatricians, the doctors, the dentists, you know what I mean, right? There seems to be this disconnect between what the diabetes online community which doesn't speak in one voice, I get it. But what we have learned over the years and what we talk about all the time, in terms of there's a hashtag language matters, right?
There's this disconnect between what we as patients want, which is no blame and shame. Work with me, help me with resources, give me the information, let me make my decisions. And the physicians who many many, many times want to scare patients straight, you know, we're gonna give them a wake up call. We're going to show them how bad they're doing and that will make them do better. And this disconnect played out on Twitter recently and I want to share with you how it went and then I would ultimately was shared at a medical conference.
Before I jumped right in though I do want to Say with those doctors who are you know, in the scare em straight kind of school, I really do think the intentions there are good. I don't know any doctor who wants their patient to walk around with a 14 A1C, you know who obviously isn't feeling well and is going to be in poor health. I don't think any doctor wants that. The question is, why don't some doctors listen to their patients more? Why don't they seem to believe us when we tell them what we think works and doesn't work. So that's my perspective. today. Let's go through what happened.
There's a guy on Twitter. His name on Twitter is @DGlaucomflecken. He says he's an ophthalmologist, a comedian, and a speaker. On February 17. He tweeted, “Want to know why diabetic eye exams are so important. I can take a 28 year old with an A1C of 14, show her a picture of a normal retina, then a picture of her diseased retina. Then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.” And he posted the pictures that he had just talked about now.
Kind of an innocuous tweet a couple of years ago, I probably wouldn't have thought anything of it. But and I was not alone here. There were some telling language in this that made me want to speak up. I'm going to link this up if you want to go through the Twitter thread. It is ginormous because a lot of people chimed in as you can imagine. I'm going to read a few tweets here. I'll just read first names from the people who tweeted this out. So these are the advocates who tweeted back
Megan wrote, “As someone who works in eye casualty for a while and has type 1 diabetes. I have heard doctors have similar conversations. I then also seen patients walk away upset and distressed. Living with diabetes can be filled with anxiety. I find it best not to feel that scare tactics aren't always the best understanding and empathy for diseases hard to manage may be better.”
Melinda wrote, “Did you ask her if she could afford her insulin and supplies? If she had a support network to encourage her or did you just decide to be Dr. Judgy Pants?”
Melissa wrote, “Do you know if she went to her car and cried from helplessness like I used to after I exams with an ophthalmologist who had This kind of bedside manner? It took some time to find a doctor who could help me create a plan instead of send me off alone and frightened.”
And then Mike wrote, “This mentality scared me into doing something better briefly as a teen. Soon enough, it led to hopelessness and years worth of higher A1Cs until love, actual good doctors and peer support inspired me to change how I lived”
I wrote “Curious if there are any long term studies showing this is effective, other than the patient saying, Wow, that's a wake up call. What is it like for them? 10 years down the road? Did it help hurt make no difference?” And I actually wrote “not being sarcastic, genuine question” because you know, Twitter, but then the ophthalmologist chimed in back.
And during all the time these advocates are saying these things, other doctors and other people are telling us how wrong we are. So the original ophthalmologist chimes in with, “I'm just showing people their own body part. I've never had a patient get upset with me for showing them pictures. I have taken up their own body part. I don't need a study to convince me to keep doing that.”
Another doctor said “Patients Like pictures. We do the same with coronary angiograms. In cardiac patients, a picture's worth 1000 words, also puts in their minds the idea of the now and the potential future, good practice.”
Another person a medical resident wrote, “I like it, it's hard to convince some patients without symptoms that keeping an A1C down to an arbitrary number is worth the effort of diet, exercise and expensive meds. This could help motivate many patients.”
And then he writes “Also, it's not the author's job, the ophthalmologist job to make sure the patient has all of the resources needed to adequately treat the patient's diabetes during their brief eye exam. That's our jobs as PCPs.” So that's what he's going to be or may be already is I can't really tell from his Twitter bio primary care physician.
Okay, so, literally, this went on for days, I kept getting notifications, because I kept chiming in, like, Are there studies like, oh, let's talk about this, you know, and, as you can imagine, it got pretty nasty sometimes. I mean, there's jerks in every Twitter thread on every side, so we're not going to talk about that. We're going to talk about the discussion and the disconnect because this is that fascinating.
Most of the doctors really believe this is a good thing, I'm so glad that that primary care physician chimed in and said, “well, it's really not your job as an ophthalmologist to give them any resources or do more with them.” And this original doctor kept chiming in and saying, “No, I really do try to support patients.” It was just one tweet, you know, we don't know what he's really doing. So maybe he is, you know, talking to them more.
What about your experience? In my experience with those other doctors, right, not the endocrinologist, the eye doctor, the dentist, even the pediatrician with Benny, they have no idea what diabetes takes. That's okay. It's not their specialty. I don't mind that. They don't know. I mind when they try to tell us more than they know. Right? Like, I had an eye doctor once Tell me, Benny was not in the room, he asked, “how long has he been diagnosed?” 12 years. I think at that time. “Well, you know, 20 years is when the complication starts showing up in the eyes.”
And I actually said out loud because I'm a pain in the ass patient. And I said, Really? What was the last time you actually read anything in a medical book about diabetes? I tried to be nice, I said it kind of nicer than that. But it's it really, when did you learn about type 1 diabetes? And he said in medical school, and I said, and when was that, right 25 years ago? And really, when were those studies done? Right? If you're looking at a study from 25 years ago, that study probably followed people living with diabetes who had been diagnosed at least 10, if not 20 years before that. So your data is kind of outdated. And we know if you're a longtime listener of the show, you know, from studies like the EDIC trial, and many others, that eye complications, along with many other complications are way down and almost non existent for people with diabetes, who have access to good care and insulin. I mean, we know there's a whole other world out there, but we know these complications when care is given our way down.
And whenever I talk about complications, I always want to say complications can happen even with the best care with diabetes. I mean, look at life - complications can happen with anything. So we try to do the best. We can see just other factors, you know, genetics, environmental, what have you. But with eyes in particular, I've talked to two endocrinologists in the past year, who say when they see a patient with any kind of eye issue under the age of 40, with Type 1 diabetes, they call everybody who's nearby, because they never see it. They want everybody to come in and identify it and look at it and see what the poor patient, but see what it really is all about, because they never see it anymore.
So my little conversation with that eye doctor, hopefully made him rethink a little bit about how he talks to other people with diabetes. I've had the same conversation with my pediatricians when I feel like educating because sometimes it is absolutely exhausting. And I had to back away from the Twitter thread because of that, that it is exhausting to keep educating and educating. You don't know everything about type 1 diabetes, you're not a specialist. Thank you for pointing this out. But what can we do about it? What's the point? Why would you say you're going to be in trouble? I'm going to give you a wake up call. I'm going to scare you straight. Why would you say all those things Thinking the outcome is going to be positive?
If you're aware of a study that talks about these things, and I was pilloried on Twitter for suggesting there could be a study, what would the control group look like? people who never get good health information, people who are never shown their bad eyes, or that they're going to lose a limb or blah, blah, blah, right? No, look, I don't create scientific studies. But you don't have to be a genius here. But why couldn't you something really short, that just gives you a taste of what we're talking about here?
Do a six month study, right? Pick an age group to a six month study your 25 year olds with Type 1 diabetes, everybody gets the same exams, but your feedback is - you're doing terrible. You have to be nervous. We're scaring you straight, kiddo. It's a wake up call. Now go get better.
And the other one is, Hey, I really feel like we could do more together. Well, how can I support you? What are the challenges you're seeing that are creating these issues with Type 1 diabetes, there may not be anything I can do to help but I understand that you're probably doing the best you can because type one is really difficult.
And then the other one, the third part of the study would People who are told here are your test results. See you next, right with no emotional kind of feedback. Why couldn't you do a quick study of that and see what happens in just six months? My guess is you would see really interesting results.
So better minds than me, thank goodness picked up on this and actually put it in a presentation at ATTD, at the international conference for advanced technologies and treatments for diabetes. This is the conference that I just talked to Kevin Sayer. That episode just aired a couple days ago. This is where he was in Madrid, Spain. So this is a huge international conference and this Twitter thread made it to a presentation, which shocked me. What shouldn't have shocked me is who was doing the presentation. This was the hashtag talk about complications presentation by Renza Scibilia and grumpy pumper Chris, who we've had them both on the show separately to talk about this and other issues. But this talk about complications slide that made its way to the presentation showed the original a tweet from the doctor, the ophthalmologist comedian, and they actually blacked out his name, which I didn't do here, because Twitter is public. And they showed the original tweet, you know, very effective wake up call. And then they put another tweet next to it. And I think that this is a hope that physicians might consider saying this instead.
So let me read you the original tweet again. And then the one that they suggest. So the original tweet, “Why are diabetic eye exams are so important? I can take a 28 year old with an A1C of 14 show her a picture of a normal retina, then a picture of her diseased retina then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.”
Here's an alternative to saying that “Diabetes is really tough, and you're managing as you can right now. Thank you for coming to see me eye screening is really important. We know having a higher A1C increases the risk of diabetes related conditions. Let's work together to try to reduce the risks.”
Now I know some of you and maybe hopefully if you got your physician or not Doctor or dentist or somebody else to listen to this episode, it might sound very, you know, Kumbaya and woo woo. And, you know, let's work together. But I'm telling you, as the mom of a kid with type one, as a person who sees doctors for her own conditions, it is so much more helpful to hear this than to hear the other scary, effective wake up call.
I mean, you know, when I go to my doctor, and I say, I'm really upset, I've been trying hard and gaining weight, you know, what I don't want to hear is “You're really fat. And we know that being obese can help lead to health complications, and higher increase of cancer. Because you know, you really want to watch out what happens, you have this risk and your family and blah, blah, blah. So just stop eating desserts.”
What would be really helpful is, “Yeah, boy, it's really tough. I can see that your whole life, you've been a healthy weight. You're an active person who knows how to eat well. What's changed in your life in the last couple of years? How old are you? What is your metabolism doing? Let's sit down and talk about how things are changing maybe so that you can find a plan that might help you change”
I mean, I just came up with that at the spur the moment, but it's so much different to here. Let me help you. And let's figure out what you can do to make this better rather than let me blame you and shame you and scare you. A lot of people tune that out. And if they're scared, they don't want to do anything to make it better because they lose hope. I really hope that some healthcare professionals who saw this on Twitter took a moment to stop and think about it. I know a lot of them responded. And remember kind of insulting frankly, calling the diabetes advocates, trolls and one person called the bats. I don't know if that's a UK thing, or I don't know what that was all about. And there were some people who got kind of nasty, as I said earlier, but I really hope that people who saw this conversation, maybe had a different conversation with the next patient that came into their office, maybe a person with diabetes, who saw the conversation had the words now to tell one of their health care providers. Look, this isn't helping me. I need you to speak to me in this way. Which is really, really hard to do.
I will say before I let you go here that a lot of the physicians piped in with Well, my patients never react poorly when I give them this news, they all seem to appreciate it. Do the doctors not know that we talk to them differently than other people? Do doctors not know that some people like get dressed up to go to the doctor will really make sure that they are well groomed. I mean, it sounds silly, but you know exactly what I'm talking about. Right? doctors don't realize that we go to our cars. And as Melissa said, in that tweet, sometimes we cry, we call the friend and say you won't believe what happened to me. Or some people will tell a nurse things that they won't tell a doctor or they'll tell the front receptionist and they'll get the anger and so the doctor, people don't tell their doctor unless you're me and you're a pain in the butt.
Very few people tell their doctor, hey, you're wrong. Or I don't like this. Or even Can we try something different? People don't talk back to doctors. And the fact that they don't know this… Come on, guys. You got to be better. You got to think about it.
What do you think my way off base here? Were you part of that? Twitter chat, did it make you mad? Did it make you think? Let me know. You can always email me Stacey at Diabetes Connections. com. I'll put this in our Facebook group as well Diabetes Connections of the group on Facebook. I'd love to keep the conversation going. If you're a physician who has listened to this long oh my gosh, thank you so much. I cannot tell you how much we appreciate it when you take a moment to consider the other side of the stethoscope for lack of a better word. Let's keep this conversation going.
Of course, if you think I'm wrong, I am the world's worst diabetes mom, I can live with that. And you can find out much more at the website diabetes dash connections.com. Please subscribe to the show on any podcast app or just keep listening through social media or however you found us. We appreciate that we're not going to tell you where to listen. We just hope you keep on tuning in. I'm Stacey Simms, and I'll see you back here next week.
Unknown Speaker 15:57
Diabetes Connections is a production of social Stacey Simms media All rights reserved all wrongs avenged
Transcribed by https://otter.ai
Halloween doesn't have to be scary for children with type 1 diabetes or their parents. Moira McCarthy & Stacey are back with Ask the DMoms. They answer your questions about all those bags of candy, lows while kids run around the neighborhood, pumps and d-tech under costumes and much more.
In Tell Me Something Good: A good beat and a follow-up that lets us say yes to the question.. is there a doctor in the house?
00:00 Show Open: What's on this week?
1:40 Stacey welcome: Thanks to Friends for Life Falls Church! The World's Worst Diabetes Mom is available for pre-orders! It will be on Amazon Nov 3
5:20 Ask The D-Moms: Halloween
38:30 Where's Stacey Going Next?
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