Millions of people with diabetes simply can’t live without insulin. Discovered over a century ago, its patent was sold for $1. But today, pharmaceutical corporations have arbitrarily raised insulin prices, leaving those who can’t afford it having to ration it–or worse, go without it. Abdul breaks down why insulin has become the epitome of pharmaceutical company greed. Then he talks to the leaders of T1International, a non-profit dedicated to insulin access, about how to ensure access.

Transcript

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Dr. Abdul El-Sayed: The CDC estimates that nearly 60% of people and nearly 75% of children have been infected with SARS-CoV-2 at least once. Moderna requests emergency use authorization for its vaccine for children aged six months to six years, though its efficacy is limited. The US Preventive Service Task Force revises recommendations on baby aspirin use for the prevention of cardiovascular disease. The move affects the daily habits of tens of millions of Americans. This is America Dissected. I’m your host, Dr. Abdul El-Sayed. Eid Mubarak, everyone. It’s been a century since the discovery of insulin. Most medications aren’t perfect. They may slow a disease progression but not stop it, address some symptoms but not others, or leave a patient with a host of terrible side effects. Insulin isn’t like that. It’s one of those rare medications that is exactly a perfect cure for a deadly disease. It’s almost miraculous. Insulin is the exact molecule the bodies of people with diabetes are missing. See, a century ago, diabetes was fatal. People with diabetes were placed on strict diets that could keep folks alive for a few years, but over time, either the diabetes itself would kill them or the severely calorie-restricted diet would starve them to death. Diabetes is an awful disease. It results in the body’s inability to recognize glucose, the basic building block of sugar, and along with that, the way our bodies store and process food energy. When you take a bite of food, your body begins to break down the carbohydrates in that food immediately, in your mouth even, through enzymes in your saliva. Your stomach churns the rest of the sugars with acids to finish the job. The resulting glucose molecules then filter into your blood from your small intestines, where your muscles, your brain, and your liver, which stores glucose, then take it up to burn as fuel. But in people with diabetes, that last part, it doesn’t happen. Instead, glucose just accumulates and accumulates, throwing off the chemistry of your blood in some really terrible ways that injure the nerves, the kidneys, the eyes, the vascular system, and so on. And that’s just chronic consequences. It can be even worse acutely. If the bodies of people with diabetes can’t recognize that there’s glucose there, they have to find another source of energy so they turn to fat, which gets broken down into chemicals called ketones. Quick aside here, those ketones are what the keto diet is named for. Keto diets are very low in carbohydrates, which requires your body to find another source of energy so it breaks down fat and releases ketones into your blood to fuel your body. That’s called ketosis. In healthy people, ketosis is just fine, but in diabetic people with too much glucose in their blood, adding ketones just adds to the messed up blood chemistry in the first place. We understood these consequences of diabetes way before we understood what caused it. But a major breakthrough happened when two scientists in Germany realized that a healthy dog developed diabetes after its pancreas was removed, suggesting that the pancreas was making the key missing ingredient in diabetes. More research narrowed that down to a substance produced by a special set of cells called The Islets of Langerhans, which is where Dr. Frederick Banting comes in. He was the surgeon who began treating diabetic dogs with the substance coming from these islets. He called it insulin, which is Latin for coming from an islet. The treatment kept those animals alive. Soon this substance was purified, creating insulin as we know it. He shared a Nobel Prize for his work, and maybe more importantly, for today’s episode, he sold the patent for insulin for a dollar, famously saying, Insulin is for the world. But today, too many people with diabetes around the world just don’t have it. In America alone, the average price of insulin is around $300 a vial, and that’s three times as high as the price just ten years ago for the exact same insulin, the insulin on which Banting sold his patent for just a dollar. We’re often told that the high cost of prescription drugs is a function of all the R&D pharma puts into them, but as the story of insulin should clearly demonstrate, that’s simply not true. Instead, it’s because raising prices makes them more money, and because they can. If you’re a diabetic, insulin is the single most important thing you need in your life because there’s no life without it, so regardless of how high the price goes, you’ll be willing to pay. Economists call this an inelastic demand curve. It doesn’t bend no matter how high the price goes. And every year, Pharma CEOs manipulate this and people living with diabetes to raise their prices higher and higher. It’s cynicism at its cruelest. It’s also been why there’s so much attention paid to insulin, it’s the poster child of Pharma’s greed. To combat this, the House of Representatives recently did this:

[clip] A bill to lower insulin costs is headed for an uphill battle in the Senate after passing the House. The Affordable Insulin Now Act would lower the price of insulin and cap it at $35 a month.

Dr. Abdul El-Sayed, narrating: The House passed a bill to cap co-pays, the amount of money and insured person can pay out of pocket for insulin, to $35 a vial. It’s a good first step, but it’s not nearly enough. Today, I wanted to talk to people leading the fight for accessible, affordable insulin. So I reached out to T-1 International, an international nonprofit dedicated to achieving that vision worldwide. Elizabeth Pfiester, who lives with Type 1 diabetes, is the founder and executive director. And Shaina Kasper, who also lives with Type 1 diabetes, is its policy director. They join me to talk about what it’s like living with Type 1 diabetes and being at the mercy of three mega-corporations, the difference between insulin access in the U.S. and abroad, and the fight for equitable, affordable insulin. Here’s Elizabeth Pfiester and Shaina Kasper.

Dr. Abdul El-Sayed: Ah, right. Can you introduce yourselves for the tape, please?

Elizabeth Pfiester: I’m Elizabeth Pfiester. I’m the founder and Executive Director of T1 International, and I’ve been living with Type 1 diabetes since I was four-years old. I live in Stroud in the United Kingdom.

Shaina Kasper: I’m Shaina Kasper. She/her pronouns. I’m the policy manager with TI International. I have had Type 1 diabetes since I was 22, and I live in Vermont.

Dr. Abdul El-Sayed: All right. Well, we really appreciate you all taking the time to join us today and tell us a little bit about TI International. To get us started, why was the organization started? Why did you get started, and what’s the mission?

Elizabeth Pfiester: So T1 International was founded back in 2013 for a number of reasons really. I obviously grew up living with diabetes. I started to learn about all the problems of the world, really, and had my own challenges and struggles living with diabetes. A lot of kind of scary high and low blood sugars. Living with diabetes is a really 24/7 job that causes a lot of stress. And I started to think about what if I was born somewhere where the health care system wasn’t as strong or where I didn’t have access to the many things that I needed to survive every day. So I really kind of started to learn and meet other people from around the world living with diabetes and realized that there are huge inequities. One in two people worldwide can’t access or afford their insulin, which is the most essential thing that people living with diabetes need. And there wasn’t really a voice for people living with the condition, where we ourselves could speak up and advocate for change. And there were a lot of organizations that did exist, maybe to look for research for a cure, but no real organization that was fighting for long-term sustainable change. And most organizations took a lot of funding or still do take a lot of funding from the pharmaceutical industry, and there was a need for a real independent voice advocating for change. And that’s why to TI International was started.

Dr. Abdul El-Sayed: Both of you all are a Type 1 diabetics yourself. And, you know, obviously, for every individual who lives with a disease, there’s a different story. Shaina, what brought you to this work?

Shaina Kasper: Yeah, I was 17 when my baby sister was diagnosed with Type 1 diabetes, and she just immediately got entered into so much diabetes community. You know, we grew up with a lot of economic privilege, she went to a diabetes summer camp and then was a CIT, a counselor, and then came back with all of these backpacks, with all of this swag with diabetes logos, you know, Pharma logos all over them. And when I was diagnosed at 22, I was already politicized. Like I was involved in the movement. I went from the hospital to doing like anti-foreclosure trainings and actions. I was like doing this radical organizing work and I didn’t want to be associated with what I saw as being the diabetes community at the time, kind of as being in the pocket of Big Pharma. And, you know, my sister became a nurse and works with kids who are newly diagnosed, so it’s, really it’s a big part of my lives. But I really saw my diabetes and my organizing community as just being really separate fights, right, until like, really like right up before the pandemic. And my story about this, yeah, is I was at a workshop in Chicago with all of these other amazing organizers, and I finished my insulin vial and I went to pull out a fresh vial and it was empty. I had packed this like empty box by accident and I knew what this meant and I panicked. I, you know, let the facilitator know, that I had to step away for some, like, couple of hours because it was going to take a while for me to figure this out. And I, you know, finally got a hold of my doctor. I got them to send the prescription to a local pharmacy, you know, hours and hours later went to go pick it up. And it rang up at over $300, which I knew was, you know, coming, and to get this one vial to get me home from this workshop. And my, you know, I handed over my credit card and it got declined. And I was just so embarrassed by how long this had taken already, and I was just so, like, angry and defeated that even though surrounded by all of these people who could love me and support me, I just didn’t ask for help, you know? I just got a needle and got like the dregs of the insulin and just rationed that until I could get home. And just to say, like, you know, I, this came with like all of my privileges that I had, you know, usually could pay to pay for it out of pocket. I knew that it was going to be $300. I thought that was going to be okay. This is the only time I did this. You know, my sister’s a nurse and have, gives me free insulin to have as a backup sometimes. Like, I live 2 hours from Canada. I have like all of these different privileges and yet I still was rationing insulin. It’s just absurd. And so then I found T1 International, you know, ordering my like Access to Insulin is a Human Right t-shirt for everyone in the family. And, you know, just last year I applied for this job and it wasn’t even until after I had started with TI International that I realized that that was what I was doing, I was rationing insulin. And, you know, even with all of this deep understanding of diabetes and politics and economic access, I had rationed, and that really scared me and really dove me into doing this work and this movement.

Dr. Abdul El-Sayed: Hmm. I want to start before we move on a little bit more. You know, Elizabeth, you have a really fascinating experience. You are American and you grew up in the United States, now you live in the UK under the National Health Service. How is your experience around being a Type 1 diabetic who is insulin dependent, how has that changed across those two places?

Elizabeth Pfiester: Yeah, absolutely. I mean, my experience, huge, huge difference, night and day. I would also start by saying I don’t think to TI International would exist if I had stayed in the United States. In order to found an organization, not take a salary for some time, I had again the privilege of the NHS and being able to fall back on knowing that my health care was covered. I receive insulin test strips, continuous glucose monitoring through the NHS. I don’t, I pay my taxes as a now a British citizen as well as an American citizen, but I don’t have to worry about battling with insurance companies, how am I going to get my next vial of insulin. Was so, so lucky that that I wound up here and then was able to say, look how lucky I am, everybody should experience what I experience, and was able to found the organization. If I was still in the United States, I would have to be working a job where I get good insurance coverage and wouldn’t be able to just take a couple of months without working. So I just always feel like that’s really important to say. And when I first came to the UK, even before I was a citizen and paying taxes, as a student for being there for more than six months, I was able to be under the NHS to get, to get health coverage, and I went to the pharmacy the first time to pick up my insulin after going through the process of getting registered and I just went and I picked up what I needed. There was no bill, there was no battle. And every time I go to the pharmacy or pick up my medications, even now, I’ve been here for over ten years, and I’m just so grateful and blown away that this is the way that it is here, and why isn’t it that way everywhere? The other thing that’s scary is the UK system is starting to move towards the privatization similar to the United States. So that’s a whole other conversation topic, but it’s something that is very worrying.

Dr. Abdul El-Sayed: There are three threads that I just want to, I want to sew together in what you both shared. One is the notion that, you know, we often think about our health care system as baked in, and there’s almost a Stockholm syndrome that comes with it. Shaina, you shared this experience of joining the, you know, the diabetes community, and it’s a great thing that there is that support network of people who share that experience. It’s not a great thing that Pharma has systematically manifested themselves as part and parcel, as some sort of benevolent funder, despite the fact that it is going to rake in dollar after dollar off of all of those peoples’ illness. You know, Elisabeth, you talked about this notion of recognizing the juxtaposition of what it could be like versus what it is like or has been like for you living in the United States. I had that experience of being a graduate student in the U.K. and watching a health care system work seamlessly around me rather than having to work my life around it. And then the third piece that that really struck me is this recognition that things don’t change unless you decide to change them, you know? And Shaina, and you having this sort of split screen experience of being an organizer against injustices in all of these other spaces, and then sort of recognizing that one of the most profound impacts of the injustices in our society on your life is our health care system, and deciding to step up and do something about it. I want to just jump into insulin itself. You know, we spoke at the top of the show about insulin as, you know, a biomedical, chemical and hormone. But I want to ask you to share your experience of insulin. What does it mean for someone living with diabetes?

Elizabeth Pfiester: Insulin really is as essential as oxygen. Most people without diabetes, of course, their body makes it on its own. But once you get diagnosed with diabetes or sort of have that realization – so I was diagnosed when I was four, so it was it took me a little while until I got older to sort of realize how crucial and essential insulin is – but at least for me personally, it’s something that I think about constantly. As I said, with diabetes, you’re constantly having to monitor yourself anyway, but we can’t just go somewhere without packing, and as Shana said in her story, making sure that we have enough to get us through, plus extra, plus more in case of vial breaks. It’s is something that’s always at the top of mind in addition to the other supplies we need, but without insulin, those other supplies are irrelevant because we won’t be alive. So without insulin, a person can die within days or hours. You’ll get very, very excruciating symptoms. Diabetic ketoacidosis is deadly and very, very painful. So I’ve experienced diabetic ketoacidosis before, both from lack of insulin and just from illness. And it kind of feels like there’s fire in your blood, and it’s incredibly painful. And as we know, there are so many people rationing around the world, and one in four people in the United States has rationed insulin because of the cost, and rationing leads to diabetic ketoacidosis. So incredibly dangerous, and just something that, again, in some ways, I think so many people’s lives revolve around insulin and when they’re going to get it and how much it’s breaking the bank.

Shaina Kasper: So insulin was first used to treat a person with diabetes in 1922, so 100 years ago. And when it was discovered, you know, their discoverers sold the patent for $1 each so that it could be accessible for everyone. And today it has just become this poster child of pharmaceutical greed. There is these three big insulin producers – Eli Lilly, Novo Nordisk, and Sanofi – that dominate almost 100% of the world’s insulin market by value. And because they have this captured market, you know, since the 1990s, the cost of insulin has gone up 1200%. List prices for insulin have just been rising astronomically over the past few years because they have such a stranglehold, too. They could, you know, they could just really decide to stop making it and we would, you know, what would that mean? What would that mean for our lives? And just, you know, recognizing our position here is that, you know, as I, you know, as a white person in the US, I like don’t worry about being accosted when I am low and I’m out for a run and have to knock on a stranger’s door or, you know, worry about getting fired when I say I’m sorry I’m going to be late, I have to, you know, I can’t drive yet because my blood sugar is too high, I have to wait for it to go down. But I do worry about what’s going to happen with, you know, a disrupted supply chain or, you know, or not being able to afford it. That’s real fear of access.

Dr. Abdul El-Sayed, narrating: We’ll be back with more with Shaina Kasper and Elizabeth Pfiester after this break.

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Dr. Abdul El-Sayed, narrating: And we’re back with more of my conversation with Elizabeth Pfiester and Shaina Kasper.

Dr. Abdul El-Sayed: I want to pick up on the metaphor Elizabeth, that you established here, it’s like oxygen, which means that if someone keeps it from you, it’s like being choked. And I think we don’t often appreciate the violence of that. And we allow a system that hides a necessary medication behind such an absurdly large and growing paywall, we allow that to be just a cost of doing business as if that is some sort of normal thing. But when you do that, what we have assented to is a sort of systematic, bureaucratic, choking of people. I want to ask, you know, Shaina, you talked a bit about the rising costs. What are the forces that are driving price increases? Now, a lot of folks just think, Well, you know, especially in this moment of inflation, costs just go up! As if that is some sort of natural process. It’s like the rain falling. But I want to understand, you know, what is driving the prices here?

Shaina Kasper: I mean, I think it’s mostly because they can! Because they have this captive market, because there are these, only these three companies that are producing insulin. When one company raises their price, the other company follows suit within days, sometimes even hours. And there’s no accountability to keep those prices capped in a price. Negotiations of insulin and other drugs as well, happen behind closed doors with no transparency or disclosures. So, you know, the structure of the insulin delivery and payment pathways create a bunch of different incentives that artificially raise the price of insulin and just have it keep going up. So just to name here too that we don’t know how much it costs insulin to manufacture, but all of the research that, you know, has been done, thinks that cost less than $6 per vial. Which, you know, one little vial is going for, you know, 300 more dollars. And that, you know, the pharmacy benefit managers, PBMs, the manufacturers, the insurance companies, are all kind of pointing fingers at each other and saying, you know, it’s not our fault that insulin is so expensive, it’s these other guys. And, you know, insulin has really become one of the most rebated drugs on the market, where insulin manufacturers offer these rebates to wholesalers and PBMs with these exclusivity provisions and these formulary provisions. So in theory, these should be reducing costs by directing patients to try cheaper insulins first, but in practice, it’s just raising the insulin list prices over and over and over again. And to say it bluntly, the force that’s driving all of these increases, is greed. You know, insulin hasn’t gotten better in the ten years that I’ve been on it, it’s just that they’re driving up the cost to be able to be, because they can.

Elizabeth Pfiester: Absolutely. And I would just add, you know, at the end of the day or the beginning of the day, however you want to frame it, just like Shaina said, there’s a lot of finger pointing, but we feel very strongly that it’s the pharmaceutical industry and these companies who really can, they set the price? Yes, there’s a lot of complications, but they could tomorrow, just like they could decide to stop making insulin, they could say, we’re going to make the list price of insulin $25 and make it affordable to everyone. They would still be making a profit and they would be ensuring that insulin is available and affordable to many, many more people. So while the system is broken and is to blame, our target is the big three insulin manufacturers – Eli Lilly, Novo Nordisk, and Sanofi – because they have the power to change things tomorrow.

Dr. Abdul El-Sayed: I want to ask, you’ve described basically this oligopoly of manufacturers who basically work in lockstep to make sure that if any of them moves to increase the price, the rest of them will move in lockstep too. This is a basic collusion. And then everybody down the chain, whether it’s the insurance companies and their pharmacy benefit managers or it’s the pharmacies themselves, everybody sort of benefits from that. And all of this is manipulating a fundamentally inelastic demand curve, right? Economists talk about different kinds of demand so if I want to buy a nice pair of sneakers, well, if the price goes up too high, I may not buy them because I don’t need a nice pair of sneakers. But if it comes to the price of milk or the price of gas, as Americans are seeing right now, those demand curves are different simply because those are necessities to be able to live your life. There is no more a necessity than oxygen, which is exactly the metaphor, Elizabeth, that you used for insulin. And so these pharmaceuticals know that they’re manipulating a fundamentally inelastic demand curve. You are going to pay what you have to pay to get this this medication that is life-critical. And a lot of folks have pointed and said, Well, the generic market should solve it, right, the entrance of generic drug manufacturers should solve this problem. Why hasn’t it?

Elizabeth Pfiester: First off, the main generics are what are called biosimilars when it comes to insulin. So not an exact replica, but because it’s a biologic, it’s called the biosimilar. So the main biosimilars that have come on the market so far are from the big three. So they’re essentially competing against themselves. There’s been a couple others, but the amount of price reduction is fairly small, 10% at most. And when you’re talking 10% of $300 of a list price, it’s not really impacting the market that much. It’s very, very costly for biosimilars to be manufactured in the first place, which is partly why, again, we see the Big Three just creating their own biosimilars because they already kind of have the set up to do that. Whereas when new players want to come in, the time and regulatory hoops to jump through, and again, just the costs to do this, are really, really off putting. And it’s just not the solution. The solution is lowering the list price.

Shaina Kasper: And I’ll just also add in here, too, that there’s so many lawsuits and patents on these drugs, and so these, the big three will just sue for any potential patent infringement. Instead of settling it out through the court system, they settle it to stop these new biosimilars from going to the market, which is, you know, a win-win for these companies, but it’s a lose-lose for patients. You know, Pharma takes advantages of all of these patent loopholes to build these thickets of patents around drugs to make them last longer. And our friends at I-MAK have shown that Sanofi that makes Lantus, which is one of the insulins, you know, they’ve got 74 patents filed on Lantus alone, which has extended that monopoly for 37 years. So it’s, it makes it really hard to be able to bring more generics onto the market.

Dr. Abdul El-Sayed: 37 years is probably right around both your lifetimes.

Elizabeth Pfiester: Not far off.

Shaina Kasper: Yep.

Dr. Abdul El-Sayed: That’s my lifetime. So you’re describing here basically that, you know, obviously you can’t start manufacturing insulin from your basement, right? That should be an obvious thing to everybody. And on top of that, we definitely want there to be some regulatory hurdles to being able to bring a new drug that people are going to, by the way, inject into their body, onto the market. And at the same time, what these corporations have been able to do is to leverage that high cost of entry into the market, basically, to create a generic market unto themselves. So they get to, as they’d say in the UK, Hoover up all the benefits that are to be had. What is the blast radius? How many people in our country go without insulin or rationed their insulin every year?

Elizabeth Pfiester: So we carry out a survey every two years. It’s actually a global survey. We get a really strong response from people in the United States. And for the past two times we’ve done the survey, it has shown that over 25% of people who responded have had to ration due to cost. So again, that’s a quarter of people, at least who filed in our survey. There’s been other surveys. There was a Yale study that found very, very similar information. So, again, that’s just a massive number. And that means maybe you’ve done it once a year, which is still any time you do it incredibly dangerous, or maybe you’ve done it many, many times over the course of the last year. So the frequency varies. But just like Shaina talked about, I think so many people don’t really realize that that’s what they’re doing and and don’t want to talk about it, even though it’s completely not their fault. They’re just, that’s part of what we’re trying to do is build community to show that this is completely outrageous and it’s happening to way more people than you’d expect. And the companies will put out more patient assistance programs and try to convince us that they’re really listening and they’re making change, when in actuality we know that they get tax breaks from doing those types of programs, and we know they get lots of great PR applause from the community when people are still rationing and dying.

Dr. Abdul El-Sayed: It’s like, it’s like being choked by someone, and then when they let you breathe being asked to thank them for it.

Elizabeth Pfiester: Absolutely. Or being asked to jump through hoops before you get choked and then allowed to breathe.

Dr. Abdul El-Sayed: Hmm.

Elizabeth Pfiester: It’s a really, really convoluted, quite traumatic situation for so many.

Dr. Abdul El-Sayed: And I want to ask you, you all are both dependent on the products that these three corporations make. And at the same time, you spend your days and nights working to hold them accountable. And there’s a profound amount of courage in that. What gives you the courage to do that?

Shaina Kasper: I’m pausing to think because I think my self interest in this work is so, is so clear and is so, yeah, it’s so transparent to me about how absurd these corporations are able to – I think pharmaceutical pricing is one of the places where the veil of this corporate greed is so, so thin and that it just makes me so angry in all of the aspect, in all of the different systems where this is happening, it’s infuriating. And for insulin in particular, it’s become this poster child of this corporate greed. And just it’s, I think as you started off by saying, it’s so easy to get caught up in the Stockholm Syndrome of this is how it is and this is how it always has to be. And instead to envision it, it’s an act of radical imagination to envision a future where we are free from these systems and where we can take care of our bodies in ways that we need. It is so fundamental in a way that a lot of a lot of things are, you know, housing, and clean air and clean water, and access to insulin are all human rights, and we should treat them as such. And I feel like, I said I was approaching this from anger, but I think it’s really coming from this, you know, vision of the future that I want to see is where I kind of how I come into this work.

Elizabeth Pfiester: Yeah, I think you said it well Shaina, it’s sort of a combination of outrage and hope, and kind of fear and hope. So, you know, we’ve both had experiences and whether it’s rationing or being just in a very terrifying situation because of our health, that I don’t want anybody to have to feel that. I don’t think that, again, whether it’s diabetes and insulin or another medication that you just need in order to feel good and not be afraid, that’s just, again, one of the most essential things. And it seems just so outrageous and ridiculous that anybody has to to feel that, especially when it comes to cost or something that is, you know, very, very preventable. I always grew up hearing that America has the best health care system in the world and again, coming in the UK and sort of experiencing that system, we’re just being fed a lie. If you’re incredibly rich, sure it’s a great system. But if you’re not, particularly if you’re from a less represented community, if you’re a person of color, your access is much more difficult. If you have Type 2 diabetes, which our focus is often on Type 1, but we work in ally-ship with people with Type 2, there’s a lot of stigma, a lot of misdiagnosis. There’s just so many factors that, again, force people into a position of fear and of urgency that doesn’t need to be there when living with diabetes is complicated enough, it causes enough stress in our lives. And so I think, myself and a lot of the TI International team are just coming from a place of not wanting that to be the reality.

Dr. Abdul El-Sayed: Well, it strikes me that if someone’s choking you, there are two approaches. One is to say, maybe I’ll just be quiet so they’ll let me breathe a little bit more. And the other is to say, stop choking me. And I really appreciate that you all have chosen to fight back. I want to talk a little bit about solutions here. The House just recently passed a bill in the United States context that would cap insulin co-pays. First, you know, I’d love to hear about the future of the bill. And then the second is, does it does it really go far enough?

Shaina Kasper: Yeah. Over the past Congress, there has been a lot of different proposals for how to lower the cost of drugs, particularly insulin. You know, we were so close this fall with Build Back Better and H.R. 3 before that, and now this Affordable Insulin Now Act – you know, these things all seem so promising and it looked like they were getting movement. But where you know, where we’re at as a Congress in this country is that for every member of Congress, there’s two Pharma lobbyists. And the latest iteration of, as of this recording, at this moment, is that there’s a bipartisan policy proposal that’s being sponsored by Senator Shaheen in New Hampshire, Senator Collins in Maine, Representative DeGette in Colorado and Representative Reed in New York and this is looking at instituting a $35 co-pay cap as well as some of the, encouraging pharmacy benefit managers and insurance companies to revert to 2006 prices. As you can probably tell from how I’m talking about it, we really think that this proposed bill – first of all, hasn’t been introduced yet – but it also just lets Pharma get away with their greed. It doesn’t do what Elizabeth was talking about earlier, of just addressing the insulin price crisis. First of all, a $35 co-pay cap is just for people WITH insurance. So no coverage of the uninsured. And 2006 prices are still way too high for so many people, including, you know, most people require multiple vials of different kinds of insulin every month. And, you know, that that adds up really, really fast. It also assumes that manufacturers will take advantage of these un-required incentives. And we know from past experience that they won’t. And so there’s really just nothing in this proposal that’s truly holding Pharma accountable for their greed. And there’s also, you know, nothing that’s really going to establish Medicare negotiations or emergency access legislation. And, you know, at TI International, we believe in a world where everyone with diabetes has everything that they need to survive and achieve their dreams, and that means having a true price cap on insulin that covers the uninsured, holds Pharma accountable for their price gouging. And the clock is ticking! You know, we really need to pass something sooner and we want it to be actually, something that’s going to actually help people who are having to pay these outrageous prices at the pharmacy counter in order to receive this insulin that is oxygen for us.

Elizabeth Pfiester: And one of the things that is also concerning to us, we’ve seen a lot of states pass some co-pay cap, $35 co-pay cap bills, and many of our 40 chapters have been involved in some of this. And, you know, in some ways, it can be seen as a step in the right direction because any change on this issue that’s going to help some people is important, but what’s concerning is even after that state legislation was passed, there was a lot of celebration of, Oh, we’ve sort of solved the insulin crisis issue. And that’s what we’re afraid is going to happen on the federal level, and why, you know, we just don’t think this is good enough. And many politicians are already talking about it like “This insulin price cap.” And it’s not a price cap, it’s a co-pay cap. And that’s just a really, really important distinction for all the reasons that Shaina talked about.

Dr. Abdul El-Sayed: Yeah. I have to admit, I made that mistake. And I, as someone who thinks a lot about health care policy, should have known better. And early on when it was passed, I sort of was like, Wow, that’s great, a price cap! But it’s a very different thing than a co-pay cap. Co-pay caps only apply to people who pay co-pays, who by definition are insured, and unfortunately, we know far too many people in our country are not insured. And then beyond that, right, it does nothing to deal with the underlying mechanics that we talked about that drive those high prices. And it speaks to a larger frustration with the way that we’ve often engaged with health care politics in this country, because too often politicians want to try and insulate people, whether rhetorically or even actually, from the consequences of an industry gone, run amok, largely because that same industry funds those same politicians to get reelected. And it’s on both sides of the aisle, right? And we have to call off that game. And, you know, if we’re not serious about actually addressing the fundamental mechanics of price increases, to bring prices down, whether it’s the collusion, whether it’s price negotiation, whether it’s, you know, investments in the direct manufacture of insulin, we’re not going to get it right. On that last point, I do want to ask you, there’s been a push to publicly produce insulin so that government can produce it safely and cheaply. What do you make of that kind of policy, and where do you think it’s future sits?

Shaina Kasper: Yeah, you had Dana Brown from Democracy Collaborative on a few months ago talk about this.

Dr. Abdul El-Sayed: We did.

Shaina Kasper: So go back and listen to that, everyone, if you’re interested. So Ti International chapters and California and Washington were involved in helping pass these laws to publicly manufacture insulin, which is just so incredible and is so needed as we’ve been talking about. So, you know, as we’ve said, there’s only these three companies that manufacture insulin and often only one of, you know, one of – well actually let me let me go back there – we need more companies on the market to bring prices down. And so California’s governor, Gavin Newsom, just budgeted $100 million in this year’s budget to move this forward, to develop these low-cost in-state insulin manufacturing. And Our Washington Insulin For All chapter is also working on partnering with this because Washington passed a similar law. And I know other states like Maine and Connecticut and other places are also looking at moving this ball forward. And there’s also some exciting things happening with nonprofit insulin production. So, you know, this one company, Civica Rx, just recently announced that they would be manufacturing insulin costing a $30 a vial or less, by 2024. But just to go back to some of the things that we were talking about earlier, you know, we’re really, really hopeful that, about all of this. And we’re really hopeful that we can move towards our goal of insulin for all, and to break this insulin cartel as well. And I think we’re kind of, we’re nervous about wanting to make sure that it’s actually fully implemented. We’ve heard these promises before. We imagine that there’s going to be legal challenges from these existing insulin manufacturers, and this timeline could just get pushed and pushed from all these pay-for-delay schemes. And so at the, for public manufacturing, for nonprofit manufacturing, we need it all. We need to get more companies doing, producing more, you know, innovations in insulin and all of it. And we need to make sure that we’re still holding Pharma’s feet to the fire and holding them accountable. We need it all.

Dr. Abdul El-Sayed: I really appreciate that. You know, a couple of years ago, I ran for governor of Michigan and we are a border state, and I had this scheme that I’d cooked up that had I won, I would have literally taking a truck across state borders and bought insulin on behalf of the people of the state of Michigan and then dared the Trump administration to stop me from doing it. It would have been, you know, it would’ve be A, importantly providing affordable insulin to people in our state. But, B, to force the issue that we continue to allow Pharma to get away with this, when across the border, they are able to afford cheap available insulin that is just as good, just as high quality – in fact, made by the same manufacturers as what we get in the United States, they just get it for far cheaper. I want to ask you, you know, you all are in the thick of the fight right now. What gives you hope?

Elizabeth Pfiester: A lot of things. I think, as Shaina said, we’re nervous about a lot, but I think there is like reimagining and sort of thinking outside of the very broken systems, while also knowing that within the system there needs to be change, and as she said, hold Pharma’s feet to the fire. I think things like, thinking back in 2019, when we stood outside Eli Lilly, we had nine family members who lost loved ones due to insulin rationing, and they stood outside Eli Lilly’s headquarters in Indianapolis and told their stories about their daughter or son or family member who literally rationed their insulin and are no longer with us. And so seeing those families, which are now part of a group called Families United for Affordable Insulin, seeing that they keep advocating – you know, we were talking about how it may be sort of a challenge for us living with this every day to advocate in this way, but they live with the loss of someone they loved because of Pharma’s greed and they are out there telling their stories and speaking. Our Charity Ambassador Nicole Smith Holt, lost her son, Alec. He was a couple hundred dollars away from being able to pay for his insulin that he needed. And she tells that story over and over again, and keeps on fighting and being able to sort of advocate alongside with her and to be in community with these people who see the need for direct action like that, really, really gives me hope. And looking back and seeing that throughout history, it’s those people who are most impacted who have made change. We saw that with the HIV and AIDS movement and antiretroviral drug access. And that fight isn’t over either, but hugely, hugely inspiring, and allows me to keep going and push forward.

Shaina Kasper: Just to say that a different way, I think, you know, our community is so powerful and our community is is winning, and, you know, we’re one of the few organizations in this access to medicines and health care access movement that is truly independent and is able to advocate for patients and not Pharma. And, you know, supporting organizations can help us in our commitment to being Pharma-free. And I think people see that and are recognizing it and are joining into this Insulin For All movement, and just really want to encourage others who are looking for finding that hope and that fight to join as well.

Dr. Abdul El-Sayed: If people want to support what you’re doing, where can they go to?

Elizabeth Pfiester: TiInternational dot com. There’s loads of information about how you can get involved. You can donate. Again, we don’t take Pharma funding and funding can be a challenge. So whether it’s with your money or with your voice or some extra hours that you have to support our cause by social media or again, coming in in person and offering your skill – anything that you can do. We truly believe that anyone can be an advocate and we help and support folks to kind of build their skills and again, be a part of this community so that our voices are louder together.

Dr. Abdul El-Sayed: Well, we really appreciate you all coming on and giving us hope for the fight for the future. There are a lot of parallels between the fight for insulin, which is, as you’ve noted, is such a poster child for the brokenness of our health care system, and the fight for a more just, equitable, and sustainable system overall. That was Shaina Kasper and Elizabeth Pfiester, both leaders at TI International. We really appreciate you taking the time to join us.

Elizabeth Pfiester: Thank you so much for having us.

Shaina Kasper: Thanks Abdul.

Dr. Abdul El-Sayed, narrating: As usual, here’s what I’m watching right now: a new study from the CDC found that 60% of Americans have COVID-19 antibodies. The CDC has been tracking this since nearly the beginning of the pandemic and prior to December, the number of Americans with observable COVID-19 antibodies, which, by the way, you get after having had been infected with COVID-19, had been half as high. Even more surprisingly, the antibodies are higher in children at 75%. What does it mean? It means Omicron was a massive wave infecting as many people as the entire pandemic before it. It also suggests that while the pandemic isn’t over, I can attest to that myself, that it’s going to be unlikely that we have another major wave. While we haven’t yet reached full herd immunity, our collective immunity is quite high, meaning the kind of massive wave requiring a large number of susceptible hosts, is exceedingly unlikely. And yet we remain in the position where BA-2 is spreading, both cases and hospitalizations rising daily. Which is why this is welcome news for millions of families with young children like mine:

[news clip] We are one step closer to a COVID vaccine for kids under six years old. Moderna is asking the FDA for a so-called emergency use authorization for their two-dose COVID-19 vaccine. It would be available for kids as young as six months of age and up to six years of age.

Dr. Abdul El-Sayed: Moderna has filed for emergency use authorization for a version of its COVID-19 vaccine designed for children aged six months to six years. However, their trial data shows limited efficacy, preventing 40 to 50% of symptomatic COVID-19 cases with lower efficacy among older children. For its part, Pfizer’s concluding its own trial for a third dose of its children’s COVID-19 vaccine, after two doses showed limited efficacy. They’re expected to reapply for emergency use authorization in the next few weeks. Finally, if you take baby aspirin for primary prevention of cardiovascular disease, you should talk to your doctor. Those 81 milligram pills have long been a mainstay of heart disease and stroke prevention, recommended for nearly anyone at elevated risk. Aspirin is an anticoagulant which can prevent the clots that cause heart disease and stroke. But the United States Preventive Service Task Force recently reviewed new evidence and found that in many high-risk patients who hadn’t yet had a heart attack or stroke, the small risk of bleeds outweighed the cardiovascular benefits. This change in policy could affect the daily habits of tens of millions of Americans.

That’s it for today. On your way out, please do rate and review the show. I ask you to do this every week, and if you haven’t already, what are you waiting for? Also, if you love the show and want to rep us, I hope you’ll drop by the Crooked store for some America Dissected merch. We’ve got our logo mugs and t-shirts, our Science Always Wins t-shirts, sweatshirts, and dad caps, and our Safe and Effective tees, which are on sale for $10 off while supplies last.

Dr. Abdul El-Sayed: America Dissected is a product of Crooked Media. Our producer is Austin Fisher. Our associate producer is Olivia Martinez. Veronica Simonetti mixes and masters the show. Production Support from Tara Terpstra and Ari Schwartz. Our theme song is by Taka Yasuzawa and Alex Sugiura. Our executive producers are Sara Geismer, Sandy Girard, Michael Martinez, and me, Dr. Abdul El-Sayed, your host. Thanks for listening.