The Daily Beast Podcast - This 24-Year-Old Diabetic Is Saving Lives the Government Won’t

Episode Date: December 27, 2020

Twenty-four-year-old Madelyn Corwin’s social media feeds feature a few selfies, videos of her insulin pump, and almost always a link to a GoFundMe page. The most current fundraiser is to raise money for a woman named Nicole who lost her diabetic son in 2018 because they couldn’t afford insulin. In other words, Corwin’s pages are not just young people fodder. Her activism is literally saving lives. “I just make a statement and I'll have people message me on Twitter or Instagram and be like, ‘thanks so much for posting about this, my dad died like three years ago,’” she tells co-host Molly Jong-Fast in this bonus episode of The New Abnormal. Corwin works with the organization Mutual Aid to raise awareness for a healthcare crisis most non-Diabetics wouldn’t otherwise know about: the insanely high costs of insulin and the Americans who are dying as a result. “[People] kind of just think like, Oh, like, you know, like Joe wasn't taking care of himself, but in reality, like Joe literally couldn't afford to take care of himself.” Without insurance, insulin (which is mainly distributed in the United States by three major companies) can cost up to $1000. Some states do have cop-pay caps, says Corwin, but she cited research that found they only help up to 27% of people on the drug in each state. “I believe in ‘96 it was like around 20 us dollars,” she says, but that rate has doubled in just the last five years. “But once it started hitting like 2011, 2012, it was like hitting those $200 a vile marks. People were like, okay, well, like something's going on?” Lobbying is a thing, but it hasn’t made much of a dent. Now, they stick to financial crowdsourcing, education and accountability. In the meantime, the #insulinforall community are deciding what the next move is: “I mean, I guess in like a dream world, I want everyone to be able to get insulin for free, but we live in the United States,” says Corwin. Hosted on Acast. See acast.com/privacy for more information. Learn more about your ad choices. Visit podcastchoices.com/adchoices

Hi, and welcome to another the new abnormal member exclusive episodes, and we thank you so much for being here. We have a very special guest with Madeline Corwin, who is someone I met a long time ago. She's a young girl. She's 24. She's a type 1 diabetic. And for the last couple of years, she has worked on trying to make sure that no one ever dies from not being able to afford their insulin. Tell me how you got started in this world. So I've had type 1 diabetes for nine years, almost 10. And I didn't have like a community of people. I didn't even know one existed really.

How old were you when you were diagnosed? I was 14. Okay, so you're 24 now. Yeah, I just turned 24 a few days ago. Okay. Yeah, and I didn't know there was a community at all until last year. the Instagram explore page for some reason. Like it was starting to give me people with diabetes,

maybe because like my Google searches and it was just like recommending me things. And I found a girl that was like really pretty and she had an insulin pump. And I started like following her. And then eventually I ended up like making my own kind of diabetes Instagram account. Right. So I had like two separate accounts. And then like it was almost immediately that like I fell in with like the right people, I guess. So, like, I fell in with, like, people that were really focused on insulin legislation and, like, mutual weight and stuff like that because it's, like, it's such a loud issue here.

You would think that, like, all diabetics would care about it, but that's not really the truth. It's a large community, but there are people who just, like, completely, I don't know if they're ignore it or, like, they don't know or, like, they're not affected by it. But that was basically how I got into it. So explain to me what you saw. when you started doing this, diabetes activism? I started on Instagram, which is nice, but you don't get, like, as big of reach as Twitter for whatever reason when it comes to this type of stuff. And also, I guess there are less people, it seems there are less people in need on Instagram

because, you know, Twitter, you can just, like, post, but on Instagram, people aren't going to, like, post, like, I need insulin. Like, that would be kind, it's just not the format of Instagram. Right. So I moved to Twitter last September, and, you know, and, you know, you can't, you know, I'm, I'm, it's just not the format of Instagram. And that was kind of when I met even more, like, people that were way deeper into doing this kind of stuff and befriended them and started getting in like direct message conversations with them. And then I got in with like the hashtag certain people were using, which I'm not sure if I should share, but like to get insulin or like to get help or just like, I guess just like boosting people. And then that's kind of when I was seeing the really big need on Twitter was when I was like opened up to that.

Because it's kind of, you kind of have to dig and you have to know where to look. Like I don't think like people like you would like really see it at all if you didn't follow me, which is a, it is in a way a good thing because it's like not completely legal to partake in this type of stuff. Right. But it is a bad thing because like then people don't get boosted the amount that they need. So that's kind of what I was seeing. So Maddoin, could you explain what? the legal part of it is? There are two parts to mutual aid. So if we think about mutual aid in like when people do like food banks and stuff like that or just like feeding people for like

Thanksgiving, obviously that's legal because they're just distributing food or funds to like families. But when it comes to like prescription drugs, that's obviously not legal. And in the U.S. insulin, the analogs are considered prescription drugs. But you can buy a much more dangerous. dangerous formula over the counter at Walmart, so it doesn't make any sense. Right, of course. Yeah, and in Canada and Mexico, they're not prescription drugs, hemelag, Lantus, novlog. So that's when it becomes, I guess, it's technically illegal, but I've never seen anyone get in trouble for it, especially because we don't, no one's exchanging money.

Or have you heard about people dying from not being able to afford their insulin? Yeah, a lot of people. A lot of people? Yeah, so they kind of come out of nowhere. I will just post about it or like I'll just make a tweet just saying like I'm like I'm venting about it. I'm mad so I just make a statement and I'll have people message me on Twitter or Instagram and be like and there are people that aren't even in the diabetes community like they just

somehow found my tweet and they'll they'll be like thanks so much for posting about this like this is not my dad died like three years ago and like no one ever talks about it and stuff like that so like we don't even have the real numbers because people like literally don't know that that's what their like parent or brother died from. They kind of just think like, oh, like, you know, like Joe wasn't taking care of himself. But in reality, like Joe literally couldn't afford to take care of himself. And on top of that, we have people who are aware, like, what their children or their sister died of. And they've, like, joined the dive. They're shamed, right? Yeah. So they, they join the community and they help, like, a lot with, like, legislation and, like,

giving testimonies and stuff like that. Was there a sea change? Was there a moment when insulin got more expensive? Yeah. So analog insulin, which is the, I guess, newer formula. It's really not that, like, fancy, but whatever. Everybody should have access to it. No questions asked. But anyway, it was released in 96, which is the year I was born. And then it slowly started increasing in price. I believe in 96, it was like around 20 U.S. dollars. And if we adjusted that for inflation in 20. It would only be in like the mid $35, $36 range per vial. It just keeps going up. And like, I guess it wasn't too concerning to Americans, like throughout the early 2000s. But once it started hitting like 2011, 2012, it was like hitting those $200 of vial marks. People were like, okay, well, like something's going on. And it was every manufacturer doing it at the same time.

And these like price changes are discussed months in advance. So it's like, I guess it is price fixing, but like everybody kind of turns a blind eye to it. Right. I would say since like 2012 or 2011 is when people like started feeling that they had to like be activists for their own disease. Yeah. Jesus. That is so, it's so interesting to me. Have you seen organization towards like lobbying politicians to control the cost? So there was one. It was there was T1 International and they were doing stuff. but there are barriers because so many people, like, on both sides of the aisle are taking insulin money. Like, that's just the way that it is.

But I guess they got C3 status. I don't know exactly how it works. I'm not, like, well-versed in that field. But they got their C-3 status, and they sent out an email to, like, everyone on their list that, like, they can't lobby anymore. So I'm not quite sure what they're doing. Because that was the whole basis of their organization was, like, if you donate to us, we will pay our constituents to, like, the volunteers in each state. And I used to lead one of the state chapters in the airs. It was hard to even contact anybody about like a basic $100 a month, which is still like

copay cap for like less than 30% of the state's insulin dependent population. Like it would have would have barely helped anyone and no one really ever replied to me, which was interesting. But now I think I told I think I told you guys maybe briefly that like me and my friends were just like really upset about the fact that like they're not lobbying anymore. I mean there has to be a reason for it. Like I'm not blaming them. So we decided like to do our own thing. Like um, so we started this like mutual aid diabetes thing. And it's it's super early. We like announced it really early because we don't want to go forward without like the whole community being able to say like, we don't like this or we like this or add this. Because I feel like our community has been like

heavily exploited for profit in the last like 10 years. So we were like, we don't want to be like that. So please like come join. So we're filing. I don't know exactly how the legal part of this works. I'm just like running. You're trying. Yeah, I'm like running the social media and I'm getting a whole team together for that.

I get to go in on most of the calls when we talk with people to like set this thing up. We have like a lawyer on board, like CPA. They all have diabetes, which is good. So they're filing for C3 status. And then I think they want to do a C4, too, because one of the people on our team, like, lives and is a lawyer in D.C. And, like, has a ton of connections. And I don't know if I can share exactly what she's doing right now. It's okay.

How much does your insulin cost per month? So it varies. How does it vary? It's kind of hard to explain. I guess in, like, simple terms, like, you take a different amount every month almost, like, especially during quarantine. I'm definitely like less active and like you know people's mental health is not bad right now like people probably aren't taking the best care of themselves so like that's definitely the boat I'm in right so they need more yes so I used to only take like one to two vials a month which would

be around $600 Jesus but now I do like three which is like closer to 900 I would have to pay more if I didn't have an insulin. Yeah, it is rent. And the average, the national average is three a month. So that's around $1,000. Jesus. I mean, it's like an impossible situation. So can you explain to us what's happening with insulin in Canada?

Like, it's cheaper in Canada and it's not prescription? Yeah, so, well, it depends what province. Right. But, like, I don't think Quebec, like, it is cheap, they're and affordable, and they supply it to its citizens, but you cannot walk into a pharmacy and just buy it. But in Ontario, like, there are a lot of diabetics in Detroit that will just cross the border and go into a, which they can't do a turn in COVID, which is great. But they cross the border and go into a pharmacy in Ontario and just buy what they need. It's the same exact stuff by the same three manufacturers worldwide, and they just go home.

That's it. Wow. It is like such a huge, crazy, unfair. Do you know how many people in America have diabetes? I'm not sure how many have diabetes, but I know there are 7.5 million on insulin, which includes every type of diabetes. But for type 1, there's only 1.5 million of us. Right. Wow. It seems like such an important human rights question of not letting people die. Well, yeah. And it's like complete life control.

Like there's a lot of things like you cannot do just because you have to constantly be insured and not just like, okay. insurance, like you have to be like good, like insured in order to live. Yeah, yeah. A lot of people stay at jobs. They like are like sexually harassed at. One of my friends did that in the past. A lot of people stay places that they can't stand or they live in states that they don't want to be. Like it's just a, it's like mass control of like seven million people taking this drug. So actually getting people insulin who can't afford it, what goes into that? So it depends what the issue is. If it's a copay problem, which copays for insulin can be very high.

I don't know where people get the idea that, like, it's really cheap. I've had people say, like, it's $400 and I can't, like, I literally can't pay for it. So if that's the case, we usually point to crowdfunding, which hopefully the, like, nonprofit in the future will be able to do, to, like, take donations and then distribute them to community members. But right now, it's literally, like, Twitter crowdfunding. Like, I think Molly's retweeted me before when I had a girl who needed, like, $800 to get all her insulin. And then, like, some of her pump supplies, that's just kind of how it works. But if it's a, if it's an issue of someone is completely uninsured, so they can't get a prescription. Remember, there's a prescription barrier, which is a huge problem for these.

Right, because you have to pay for a doctor to prescribe it. Yes, and it's very expensive. and lots of primary care doctors won't prescribe insulin. It's just weird. Sometimes you have to go to a specialist, which is even more expensive. But if these people don't have insurance, that's kind of where it gets trickier. So we have to literally mail them insulin. Or I like to find people close to them and hopefully they can like orchestrate some kind of like drop off.

But I don't let anyone exchange money for any of this. It has to all be free. I mean, it's just such a nightmare. In your ideal world, you would have a cap on the cost of insulin. Yeah, I think that it shouldn't be any more than what would be adjusted for inflation today. I mean, it doesn't make much sense to me. It's just astronomically high. Like, that's my only, my only gripe with that.

I mean, I guess in like a dream world, I want everyone to be able to get insulin for free, but we live in the United States. So I'm kind of thinking, like, will we get, like, health care first? Or will we get insulin caps first? So that's kind of the question that the community is asking, like, which do we focus on? Who are the drug makers who make sort of the big insulin brands? So there's Eli Lilly, which they're U.S. base. They're in Indianapolis.

And then there's Nova Nordisk, and they are Danish. And then, who is it? So no fee. And they're French. So there are three main companies, for insulin. Yeah, I don't know any other ones. I don't think there are any other ones.

It seems like something that the right legislator could, could figure out something for. There are people that want to help, but I just, like, I think there are a variance to it that no one really knows about, which kind of makes me worried. Yeah, but $800. months is insane so you don't die. I mean, that's insane. Yeah, and even if you have insurance,

like I just mentioned earlier, the copays are still pretty hefty. Like, what's the average copay? So, I mean, it's going to depend. I know some states have copay caps, but those, we've done some data digging, one of my friends, Hannah, and she found that they help less than like 27% of people on insulin in each state because it's only employer, like a specific type of employer insurance. So I think people are paying like $150, $200 because these copay caps are like $100 copay caps and people are like cheering for them. Like that's like $100 a month is low for people. Right. I was going to say. Melvin, can you tell us where people can find you and where people can find more information to

help with your cause? Yeah. So my Twitter and Instagram is insulin thought, but with a zero, so I-N-S-U-L-I-N-T-H-Z-Z-O-T on Twitter and Instagram. And that's basically where I just, I facilitate everything through my Twitter. Yeah. No, I mean, it seems like what you're doing is the kind of thing that's so incredibly important. Yeah, and I have a whole, you know, like squad of people. I don't think I could do it alone. I would explode. Yeah. No, I know. But it's really important.

And it's the kind of activism that, like, saves people's lives and changes everything. thing, so. Yeah, we make the insulin manufacturers look good because less people are dying. Yeah. Oh, God. I'm sorry. It's messed up, but it's true. On that note, we'll wrap up this episode of the new abnormal from The Daily Beast. In future episodes, we'll be talking with smart folks from The Daily Beast and beyond from media, culture, politics, and science who will help us understand what's happening to our country and the world. We hope you'll subscribe to us on your favorite podcast app and share the show on social media. getting started and don't want you to miss an episode. If you'd like to follow us on Twitter,

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