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Diabetes Connections | Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: Category: advocate
Dec 9, 2023

Mila Clark became a popular advocate for type 2 diabetes after her diagnosis in 2016 But she was actually one of the many adults misdiagnosed – she actually lives with LADA. One of the biggest changes she experienced was how her health care providers treated her, they were much more supportive when they realized she had LADA – also called type 1.5.

Mila is working to reduce the stigma around all types of diabetes. We talk about her advocacy, her Hangry Woman business, the unique patch pump she’s using and a lot more.

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

Find out more about LADA

Our previous episode with Mila here 

Find out more about Moms' Night Out 

 

Find out more about Moms' Night Out 

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

Take Control with Afrezza 

Omnipod - Simplify Life

Learn about Dexcom 

Edgepark Medical Supplies

Check out VIVI Cap to protect your insulin from extreme temperatures

Learn more about AG1 from Athletic Greens 

Drive research that matters through the T1D Exchange

The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:

Sign up for our newsletter here

Here's where to find us:

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Check out Stacey's books!

Learn more about everything at our home page www.diabetes-connections.com 

Reach out with questions or comments: info@diabetes-connections.com

 

 

Dec 9, 2023

Do you know your rights with diabetes? Our guest this week is John Griffin, a trial lawyer with more than 30 years of advocating in and out of the courtroom. He lives with type 2 himself – this is an eye opening and useful conversation.

Griffin served as National Chair of the Board of the American Diabetes Association in 2011, and is the former Chair of the Association’s Legislative and Regulatory Subcommittee.

Also, if you’ve been given a blood glucose meter you probably know how to use it, but do you know how it works? We’ll explain the chemistry going on here

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

More information about how your glucose meter works: 

More about c-peptide 

The information explaining Metformin comes from DiaTribe

Find out more about Moms' Night Out 

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

Take Control with Afrezza 

Omnipod - Simplify Life

Learn about Dexcom 

Edgepark Medical Supplies

Check out VIVI Cap to protect your insulin from extreme temperatures

Learn more about AG1 from Athletic Greens 

Drive research that matters through the T1D Exchange

The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:

Sign up today (no spam we promise) 

Here's where to find us:

Facebook (Group)

Facebook (Page)

Instagram

Twitter

Check out Stacey's books!

Learn more about everything at our home page www.diabetes-connections.com 

Reach out with questions or comments: info@diabetes-connections.com

 

 

Nov 28, 2023

This week, Mila Clark became a popular advocate for type 2 diabetes after her diagnosis in 2016 But she was actually one of the many adults misdiagnosed – she actually lives with LADA. One of the biggest changes she experienced was how her health care providers treated her, they were much more supportive when they realized she had LADA – also called type 1.5.

Mila is working to reduce the stigma around all types of diabetes. We talk about her advocacy, her Hangry Woman business, the unique patch pump she’s using and a lot more.

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

Find out more about LADA

Our previous episode with Mila here 

Find out more about Moms' Night Out 

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

Take Control with Afrezza 

Omnipod - Simplify Life

Learn about Dexcom 

Edgepark Medical Supplies

Check out VIVI Cap to protect your insulin from extreme temperatures

Learn more about AG1 from Athletic Greens 

Drive research that matters through the T1D Exchange

The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:

Sign up for our newsletter here

Here's where to find us:

Facebook (Group)

Facebook (Page)

Instagram

Twitter

Check out Stacey's books!

Learn more about everything at our home page www.diabetes-connections.com 

Reach out with questions or comments: info@diabetes-connections.com

 

Sep 29, 2023

Bonus episode! Rob Howe is the host of Diabetics Doing Things. He’s also one of the speakers at my Mom’s Night out event coming up in just over two weeks Outside of Dallas, in Frisco Texas.
He’s been going a lot of cool stuff and we were just catching up.. and I thought it would be fun to record a conversation about everything the two of us are working on. So here’s that chat, very little editing and no commercials.
Our regular episodes of course air on Tuesdays – next week’s will be late in the day or maybe Wednesday morning. I’m talking to Dexcom at EASD European Assoc for the Study of Diabetes on Tuesday, so we’ll turn it around as quickly as possible.
Ok, as always, This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

Find out more about Moms' Night Out 

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

Take Control with Afrezza 

Omnipod - Simplify Life

Learn about Dexcom 

Edgepark Medical Supplies

Check out VIVI Cap to protect your insulin from extreme temperatures

Learn more about AG1 from Athletic Greens 

Drive research that matters through the T1D Exchange

The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:

Sign up for our newsletter here

Here's where to find us:

Facebook (Group)

Facebook (Page)

Instagram

Twitter

Check out Stacey's books!

Learn more about everything at our home page www.diabetes-connections.com 

Reach out with questions or comments: info@diabetes-connections.com

 

 

Apr 25, 2023

Long thought an impossible, development people with type 1 diabetes are now working as commercial airline pilots. The very first to be certified in the US , Pietro Marsala says he decided to forge ahead while working as a flight instructor, taking inexperienced student pilots up while he was in control.

Pietro will share what happened next, how a mountain of data gradually won of skeptics, his in flight diabetes routine and what he’s up to now. You might be a passenger on his next flight!

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

Follow Pietro on Instagram: https://www.instagram.com/flytype1/?hl=en

FAA requirements for pilots who dose insulin: https://www.faa.gov/ame_guide/dec_cons/disease_prot/itdm

More about Pietro Marsala: https://www.healthline.com/diabetesmine/first-commercial-pilot-type-1-diabetes

 

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

Take Control with Afrezza 

Omnipod - Simplify Life

Learn about Dexcom 

Check out VIVI Cap to protect your insulin from extreme temperatures

Learn more about AG1 from Athletic Greens 

Drive research that matters through the T1D Exchange

The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:

Sign up for our newsletter here

Here's where to find us:

Facebook (Group)

Facebook (Page)

Instagram

Twitter

Check out Stacey's books!

Learn more about everything at our home page www.diabetes-connections.com 

Reach out with questions or comments: info@diabetes-connections.com

 

 

Mar 29, 2022

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)

Here's the episode Stacey references with Thom Scher and Aaron Kowalski

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

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription Below (or coming soon!)

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Jan 4, 2022

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

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

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

More about Dr. Phyllisa Deroze

More about Dr. Heather Walker

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription:

Stacey Simms  0:00

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

This is Diabetes Connections with Stacey Simms.

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

 

Dr. Phyllisa Deroze  0:30

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

 

Stacey Simms  0:49

That's Dr. Phyllisa Deroze, who wrote a chapter in a new book we're talking about this week. The book is called (Un)Doing Diabetes Representation, Disability Culture. And it's authored by Dr. Heather Walker, Dr. Deroze and Dr. Walker both live with type one, and they join me for a great conversation. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show, I am always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. This is our first show of 2022. So Happy New Year, everybody. I hope you're doing okay. Still stressful days for everybody. But hopefully you can kind of come along with me every week, as we talk about what we're finding interesting in the diabetes community.

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

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

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

 

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

 

Unknown Speaker  4:50

Thank you.

 

Stacey Simms  4:51

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

 

Dr. Phyllisa Deroze  5:12

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

 

Stacey Simms  6:06

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

 

Dr. Phyllisa Deroze  6:20

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

 

Stacey Simms  7:09

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

 

Dr. Heather Walker  7:21

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

 

Stacey Simms  8:45

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

 

Dr. Heather Walker  9:11

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

 

Stacey Simms  10:13

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

 

Dr. Phyllisa Deroze  10:23

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

 

Dr. Heather Walker  12:11

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

 

Dr. Phyllisa Deroze  12:15

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

 

Stacey Simms  13:05

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

 

Dr. Phyllisa Deroze  13:43

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

 

Stacey Simms  14:55

literally says I denied it in your file.

 

Dr. Phyllisa Deroze  14:57

Yes. Wow.

 

Stacey Simms  14:59

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

 

Dr. Phyllisa Deroze  15:05

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

 

Stacey Simms  15:47

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

 

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

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

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

 

Dr. Heather Walker  17:14

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

 

Stacey Simms  19:43

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

 

Dr. Phyllisa Deroze  19:59

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

Can you talk about some examples?

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

 

Stacey Simms  22:59

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

 

Dr. Phyllisa Deroze  23:08

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

 

Stacey Simms  26:53

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

 

Dr. Heather Walker  27:30

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

 

Stacey Simms  29:06

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

 

Dr. Heather Walker  29:13

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

 

Stacey Simms  29:46

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

 

Dr. Heather Walker  30:18

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

 

Stacey Simms  30:34

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

 

Dr. Heather Walker  30:48

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

 

Stacey Simms  31:04

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

 

Dr. Heather Walker  31:23

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

 

Stacey Simms  31:37

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

 

Dr. Phyllisa Deroze  31:43

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

 

Stacey Simms  32:13

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

 

Dr. Heather Walker  32:21

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

 

Stacey Simms  33:20

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

 

Dr. Phyllisa Deroze  34:06

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

 

Stacey Simms  35:01

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

 

Dr. Heather Walker  35:07

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

 

Dr. Phyllisa Deroze  37:19

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

 

Stacey Simms  37:46

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

 

Dr. Phyllisa Deroze  38:15

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

 

Dr. Heather Walker  39:06

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

 

Stacey Simms  40:08

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

 

Dr. Phyllisa Deroze  40:18

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

 

Dr. Heather Walker  40:21

Yeah, this has been so fun.

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  40:34

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

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

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

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

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

 

Benny  45:07

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

Oct 5, 2021

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.

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

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Episode Transcription coming soon!

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Stacey Simms  0:00

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

 

Announcer  0:22

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.

Benny  33:12

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

Mar 13, 2021

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.

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

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Episode Transcript:

Announcer :05

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?

 

Emily Miller1:53

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.

Stacey Simms

We all just sang it. (laughs)

Emily Miller

(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.

 

Emily Miller4:46

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.

 

Emily Miller6:38

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?

 

Emily Miller7:45

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?

 

Emily Miller9:27

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?

 

Emily Miller13:03

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?

 

Emily Miller17:21

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.

 

Emily Miller20:14

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?

 

Emily Miller23:09

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.

 

Emily Miller26:13

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!

Announcer 26:38

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.

 

Benny 29:16

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

Mar 11, 2021

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

Sierra resigns from Beyond Type 1 

 

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

Join the Diabetes Connections Facebook Group!

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Episode Transcription

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?

 

Announcer  0:13

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

No problem.

 

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

  1. So I would always like go to the bathroom to give myself shots and try to prick my finger. And, of course, that caused some problems, because I wasn't testing or bolusing when I was supposed to. Sorry, no. So

 

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

You won.

I lost.

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

Yes,

 

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.

 

Announcer  33:04

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.

 

Benny    35:34

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

 

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