Walking on Broken Vials

Note: Beta Cell is an audio podcast and includes emotion that is not reflected in text. Transcripts are generated by human transcribers and may contain errors. Please check the corresponding audio before quoting.

Hannah was 4 years old when she was diagnosed with type 1 diabetes.

Hannah: So I've been living with this disease for quite a while here. And my mom also had type one diabetes. So in many ways, it was really nice that, you know, I had diabetes, but I didn't have to go through it alone. You know, in other ways, it was really tough, right? Because, you know, my mom had expectations for, you know, what diabetes management looked like. And my mom was one of those parents who cared more about my diabetes than her own diabetes.

We didn't have that much money, like, we got by, like, there was always food on the table. But she always had this idea that, you know, we didn't have enough money to take care of two people with diabetes in the family. Because even with health insurance, copays are expensive and that stuff added up, and it added up for a family and budgeting diabetes into the family budget took a lot of work.

She never had her own insulin prescription, she never went to a doctor, it was all this pressure on me to take care of my diabetes, when in reality, she didn't feel like we had the means to like, take care of herself. But my mom, you know, had undiagnosed depression that we just never really caught on to and so she just stopped taking care of her diabetes altogether.

Craig: What was that like for you, knowing what diabetes is like and seeing her go through that?

Hannah: I think as a kid, it’s like you kind of like compartmentalize, right? Like, I couldn't really put the pieces together of like, what the impact was going to be. I think, fundamentally, you kind of have to know that things aren't going well, right? But like, my mom kind of hid her diabetes management and how bad things really were from the rest of us. So when my mom started having diabetes complications, I didn't even put it together that it had anything to do with diabetes or her management of diabetes. Like these are all dots that I connected after my mom passed away

Craig: How old were you when she passed away?

Hannah: 16.

Craig: And what was that like for you knowing it was because of not managing diabetes?

Hannah: I've always kind of thought of my mom as being someone who rationed insulin, right? And it's not a clear cut rationing story of like: oh, the price of insulin is high, it's just completely inaccessible to me. But it's all these other different barriers that all added up to this point where my mom never had her own prescription and would just skim off of like my vials. When it comes to insulin rationing, it's like there's a lot of different things at play, and a lot of different barriers. Pricing a huge one now.

This year marks the 100th anniversary of the discovery of insulin. Before it, type 1 diabetes was a guaranteed death sentence. The last century has seen remarkable advances in new insulin formulas and technologies that can let people with this chronic autoimmune disease live longer and healthier.

But the latest survey showed that 1-in-4 Americans who need insulin are forced to ration it because they simply can’t afford it. Hannah’s mom is just one on a growing list of people with type 1 diabetes who have passed away, far too early, because they are priced out of this 100 year old lifesaving liquid.

Today on the show: Why in the United States, the richest county in the world, are so many people running out of insulin? We look at how it costs so much, what happens when you can’t afford it, and who is trying to fix it.

If you drop a glass in the sink and it shatters, you might feel dumb for a second, maybe even angry at yourself, but it’s no big deal. You can just go to the store and buy a new one. In most counties, if you drop a vial of insulin and it shatters, it works the same way: you just have to go to the pharmacy to get a relatively cheap replacement at any time without a prescription. And that’s important, because without insulin, you die in one or two days. No amount of exercise, low carb eating, or cinnamon that can stop an insulin dependent person from dying if they don’t have insulin.

And this model of cheap, prescription free, easily accessed insulin is the standard in almost every country with one major exception: the United States, where the fear of not being able to access insulin is because you may simply not be able to afford it. Right now, at least 1-in-4 Americans who need insulin are forced to ration it because of how much it costs in the United States. This is the only county where the price has increased from $20 a vial in the 1990s to almost $300 a vial today, and most people go through several vials a month. You can get in your car and drive to Canada or Mexico and buy the same vial for a tenth of the price it is here, no questions asked.

The only way around this $300 list price is if you have insurance, and we’re going to be talking specifically about commercial insurance, not government programs like Medicare and Medicaid. Okay, so if you do have insurance, you would pay a premium every month just to have your insurance plan and then a copay every time you refill your prescription for insulin. But even if you do have health insurance, there are some caveats:

the brand of insulin that works for you has to covered by your insurance,

you have to have already hit your plan’s deductible (which is the amount you have to spend before your insurance starts paying for anything),

you have to have gotten the time off of work and had the ability to get to a doctor’s appointment to get a prescription,

and your insurance has to say that enough time has passed for them to allow you to get another refill.

If all of those happen to align, you can get your insulin for, on average, $20 to $30 a month. But if you’re walking out of the pharmacy and accidentally drop that vial of insulin and it shatters? Then you have to turn around and pay $300 to replace it.

Healthcare in the United States is a complicated patchwork of laws, programs, and tax-incentives that push Americans around in order to save businesses the most money, which has left more and more Americans struggling to get the insulin that they die without. The result is that there are now two classes of people in the U.S. healthcare system: those lucky enough to have good insurance and those unlucky enough to not. The right to life, which our founders called self-evident in the Declaration of Independence, is now determined by the print on a little plastic insurance card in your wallet.

Jesse: There's a temptation to create a bad guy in the story, but the more that I've talked about it, the more that it's developed in a way that it has perverse incentives that actually are problematic for patients, but it wasn't developed intentionally to make it that way by any one party.

That’s Jesse Bushman, the Senior Director of Health Policy at JDRF, which is the largest type 1 diabetes specific nonprofit in the world. I should note that JDRF receives funding from the big three insulin manufacturers.

Jesse: So during my career, I have worked for a major biopharma company, I worked for the trade association for health insurance plans, I worked for the federal agency that oversees Medicare and Medicaid, and I've also worked with a couple of provider oriented organizations. All of them complain about each other, and they are all right. It’s just that they each push their own story to the limits.

In order to figure why the list price of insulin is so high in the U.S., I asked Jesse how we got here.

Jesse: So let's start with the manufacturer. You said that there are these three insulin manufacturers: Novo, Lilly, and Sanofi.

There are three pharmaceutical companies that produce 90% of the insulin on earth and control almost 100% of the insulin in the U.S. They are Eli Lilly, Sanofi, and Novo Nordisk. They don’t release how much it costs them to make a vial of insulin, but estimates have it at around $5 or $6 per vial. They set what’s called the list price, that’s the $300. That’s how much your pharmacy pays to have a vial of insulin on the shelf.

Now, if you don’t have insurance or if you are still in the deductible phase of your plan, you pay that whole list price right then: $300 a vial. So if your prescription is for 4 vials of insulin, your first refill of the year will cost you $1,200 in order to stay alive for just one month—that’s $40 a day.

Jesse: That’s where we hear the most pain and people who are uninsured who just have to pay the whole thing.

But if you have insurance and you’ve already paid your entire deductible, you just pay your copay. So if that’s only $20, how does the pharmacy get the other $280 to pay back the insulin maker?

That comes from this entity known as a pharmacy benefit manager, or PBM for short. They are a subcontractor for the health plan that handles all their prescription drug coverage. It’s kind of like how your car insurance doesn’t actually repair your car, they just pay an auto shop to do it for them. So if you’re only paying $20 to the pharmacy when you get your vial of insulin, the PBM has to pay for the other $280.

Part of the subcontracting deal is that PBMs get to decide which drugs show up on your health plan’s formulary—that’s the list that decides which drugs the PBM will pay for. If the insulin you want is on the list, you only pay the $20 copay. And this is good for you, since you’re only paying $20, and it’s good for the insulin makers, because it means much more people are going to buy their insulin because it’s so much cheaper than their competition.

And the reason that this list exists can really only be described as a shakedown.

Jesse: And what they do is they'll go to the drug manufacturer, and they'll say, “Hey, Mr. Manufacturer, I am a PBM and I represent 10 health plans and all of the people that they insure. And so I want you to give me a good deal because I'm bringing lots of volume to you. Every time somebody buys one of these drugs, you give me some money, basically a little bit of a refund for every one of those purchases, because I'm a big purchaser and I deserve a discount.” Well, why in the world would they do that?

The same way that there are only three insulin makers that control most of the insulin in the U.S., there are three PBMs that control the prescription drugs for 75% of Americans: CVS Caremark, Optum RX, and Express Scripts, so they have a lot of negotiating power.

Jesse: What does that mean? Well that means when CVS goes to talk to a manufacturer of insulin, they represent 100 and something million people. So when they say to the insulin manufacturer, “Do you want to be on our formulary, our list of covered drugs? And do you want us to treat you nice and make it easy for people to get your drugs?”

Let's say that you, Craig, are in charge of market access for Novo Nordisk, and CVS is sitting across the desk from you. And you're thinking to yourself, “If I say no, I'm not getting a bonus this year.” Because CVS will take their 100 and 2 million people and they will march across the street to Eli Lilly, and they'll have that conversation over there. And Eli Lilly will say, “Absolutely we want to be on your formulary.”

And so CVS says, “Okay, in order to be in our formulator you need to give us a pile of money that's this high.” Six months later, a year later. PBM runs across the street to the other insulin manufacturer and they have the exact same conversation. “We've been treating you poorly because we've been buddy buddies with the other manufacturer across the street. Do you want to be our good friend? Do you want to be our buddy?” Second insulin manufacturer says, “Of course I do.” So the PBM says, “Well, you got to give us a pile of money that's incrementally bigger than those guys across the street have been given us.”

This is the heart and the core of the problem with insulin pricing

The PBM goes back and forth to each insulin maker taking bids on their formulary like an auction. If the insulin maker wants to win—which means having the preferred insulin for those 100 million Americans the PBM covers, then they have to bid higher and higher.

Jesse: That’s the perverse incentive: that they are pushed, because of this competitive dynamic, to cyclically raise their prices over and over and over again to the detriment of patients. Because if they said, “No, we're not going to play this game,” the PBM would just go off to the other insulin manufacturers and they would lose an enormous chunk of their business.

Unlike an auction where you have to pay everything up front, the insulin makers pay the PBM every time someone the cover buys a vial of insulin. That’s where our missing money for our vial of insulin comes from. You give your pharmacy $20 for your copay, the PBM pays the rest, and the insulin maker gives the PBM some money for being the preferred company. Every time the list price increases, the PBM is getting more of this kickback.

Jesse: So the question is, what does the PBM do? Now they have this gigantic pile of money, what do they do with it? Once upon a time, they kept a good chunk of it, which meant that, quite frankly, they liked higher price drugs because a high price drug with a high rebate is super awesome, right? It makes a big pile of money. And there as there became more public awareness about this game, the PBM started passing more of it on to the health plans like it's the hot potato, right?

So the health insurer will get this big check for those rebates. And what they do is they use that to lower premiums, keep them down. But it does that for everybody who's in the insured pool. They don't take those rebate dollars and give it to the person buying the insulin. This is an upside down insurance model.

The way health insurance works in the U.S. is that the chronically ill, the people who require drugs like insulin every day to stay alive, subsidize the cost of insurance for healthy people. This is a tax on being sick. This is the opposite of every other developed nation’s health insurance system. It’s not empathy, it’s cannibalism.

So, let’s recap how commercial insurance works in the U.S.: The pharmaceutical companies make a vial of insulin for $5 and sell it to the pharmacy for $300. You pay your insurance a monthly premium and then they hire a PBM, who auctions you off to a pharmaceutical company. When you go to the pharmacy and pay you $20 for a vial of insulin, the PBM covers the difference, and the pharmaceutical company pays them some money, and then that money gets passed down to your health insurance to make the premiums cheaper for everyone on the plan.

Jesse: Like I said earlier, it wasn't like somebody sat down and said, let me invent a system that really just sticks it to the patient. They're all rational economic actors. And in order to stop the merry-go-round, so that everybody can get off at once, what we really need is the Congress to step in and say, okay, at least insofar as insulin is concerned, “No more rebates.”

What would happen if rebates just went away? Jesse went to the three insulin makers and asked them.

Jesse: And all three of them independent of each other pretty quickly said, “Well, we'd have to compete on our net price.” And I believe that.

Liz: Rebates, sure, maybe they're part of the problem, but I would not say that that is the crux of the issue.

That’s Elizabeth Pfiester, the Founder and Executive Director of T1International. They are a patient-led global nonprofit that has committed to never taking money from the pharmaceutical industry in order to avoid any influence on their advocacy.

Liz: If you want one short soundbite answer, it's greed. It is the greed of wealthy people. And it is that broken system that upholds their greed.

It is a global crisis: there are people in all corners of the world who can't afford their insulin. We know that in the United States, people are paying the most dollar for dollar amount, but we know that people are paying huge percentage of their income no matter where they are in the world. One in two people who need insulin can't access or afford it. So that's 50%. There’s basically a ghost population of people who should be in the world with diabetes—type 1 diabetes in particular but this applies to multiple types of diabetes—that haven't had a chance at life because, again, in my opinion, because of the greed of the pharmaceutical industry.

Some would call it a cartel.

Craig: what does that mean?

Liz: It means a group of entities working together to keep prices high. In a properly functioning market, if there were three companies competing, they would be sort of lowering their prices to compete with each other. But we have seen that those prices really just go up in lockstep.

In addition to this collusion, Liz mentioned other issues like patent thicketing, where pharmaceutical companies keep tweaking their insulin formula in small ways—not enough to change how it works, but just enough to extend their patent on it—or how they will buy other companies that are making new insulins or pay them to stop development.

Even biosimilar insulins, which are the biologic equivalent of generic drugs, are being made by these same three pharmaceutical companies. They control their own competition, so there is no external economic pressure to lower prices.

Liz: It's frustrating when the complicated system or the finger pointing at rebates, or at pbms, or at insurance companies, which are all a part of the broken system, then nobody is actually held accountable.

It’s still the insulin makers themselves who control the list price. They are the only ones who can increase it—but they don’t have to. And there is growing sentiment from the diabetes community that this list price be lowered, either by the manufacturers themselves or by governments.

Liz: I live in the UK, I grew up in the States, and I've experienced the US healthcare system and I've experienced the national health care system here in the UK. And it's not a perfect system, but it's a system where I don't have to pay out of pocket for my insulin. It’s, in my view, a system that views health as a human right and, no matter your position, you have a basic access to health.

Americans, however, are still stuck with a healthcare system that was designed to help the healthy, leaving everyone else to, literally, pay the price. But when the price of a drug that people need to stay alive is so astronomically high, the cost isn’t just economic, it’s measured in lives lost. The 1-in-4 insulin dependent Americans who are rationing their insulin are slowly dying while they wait for their next prescription refill. If they’re lucky, they get it just in time. If they’re not, they become yet another member of the ghost population.

There’s a gap in our healthcare system where you can make too much money to qualify for Medicaid but not enough money to pay for insulin, whether that’s because your health insurance plan’s deductible or copays are too high, or because you can’t afford the premiums to even have insurance. So with mounting pressure on pharmaceutical companies to help people afford the increasingly expensive list price of insulin, they’ve created programs that you can apply to in order to help you stay alive. There are a few types of these programs. Eli Lilly, for example, offers an emergency 30-day supply of insulin at no cost that you can use once in your life. A single “get out of jail free” card.

They also offer a $35 copay card. You print off a coupon that your pharmacist enters and you just have to pay $35 for your monthly refill of insulin. There is, however, a cap on the amount of insulin you can get every month and a limit of $7,500 a year. You have to pay for anything over that. The program is set to expire at the end of 2021 and Eli Lilly also notes that this card can change or be cancelled at any time without warning.

The last program is run through the Lilly Cares Foundation. To apply, you need to be uninsured or be on Medicare Part D and make less than a certain annual income. Kayla, who is 30 years old now, relied on these programs for several years.

Kayla: So being a bartender in Las Vegas, that was probably making less than $10 an hour, but I would get tips. You know, when you're in the food and beverage industry, you don't really get insurance.

Craig: Is it just because insurance costed so much?

Kayla: Yeah, it's insurance, it's just so much money. I didn't have it. So I’d just be seen at that clinic by a doctor and the doctor wouldn't do anything for my diabetes, I didn't even get my A1C checked. So I started doing it myself. And I looked up online patients assistance programs, and I saw their application.

And it said, you know, what you need to do is get your doctor to sign a letter saying you have no insurance, you’re low income making like, less than, like, $15,000 or whatever. And then as time went on, that program got harder.

Craig: How so?

Kayla: I think they realized it was too easy. And too many people were starting to do it. So they wanted me to get a letter to say that I was rejected by MediCal, like not be helped by MediCal, be insured by MediCal in any way. Have me send in my paycheck stubs or my W2s, just more documents?

Craig: Did you think like, this is too hard, I'm just gonna give up?

Kayla: No, I had no option. It's the most horrible thing and you have that in the back of your mind forever. Will I be able to afford to live? Everything you do, will I be able to afford to make? It's the most traumatizing thing for the rest of your life. Diabetes you can handle but the mental aspect of this is so hard to handle.

I mean, I was rationing my insulin already. I had to do whatever I could to make them give me that insulin. Because getting that insulin was like power in my hands, getting that six months supply of them and saying like, “Screw you, now it's mine.” You can't dictate this part of my life anymore. I got you. And for years I did that and I loved it.

But Kayla was actually lucky. There are many other cases of people who could not afford insulin and were still denied by these patient assistance programs.

Nicole: My son Alec was a healthy, active, hardworking young man. He tried not to allow diabetes to control his life, but he took control of his diabetes. The one aspect that he had no control over and neither do the other millions of diabetics is the cost of their life sustaining insulin and diabetic supplies.

That Alec’s mom, Nicole Smith-Holt, describing him at a congressional hearing in 2018. The year before, he was working as a restaurant manager in Minnesota making $40,000 a year before taxes. Since he was about to turn 26, he could no longer stay on his mom’s health insurance plan, so he started to weigh his options.

His employer did not offer insurance and he made too much money to qualify for Medicaid, so those were off the table. He found a plan on the insurance marketplace, which had a $450 a month premium with a $7,600 deductible. That means for the first 6 months of the year, Alec would be paying $1,300 a month for his diabetes supplies—that’s half of his salary—on top of $450 each of those months just to have the insurance that was not paying for any of his supplies. So instead, Alec decided that he would just go without insurance and use that $450 that would have gone to his premiums to help pay for his $1,300 of monthly diabetes supplies.

Nicole: I received a call that no parent ever wants to receive or expects to receive. I was told that my son was found dead in his apartment on his bedroom floor. And was found all alone.

My son aged off of my health insurance on June 1st of 2017 because he turned 26. He went to the pharmacy on or around the 22nd of June and was told that his bill was $1,300 for his monthly insulin supply. Unfortunately, Alec was a week from payday, so he did not have what was needed to pay the $1,300 bill. So he did what many diabetics have done in the past, he began to ration what he had left and he was found three days before his paycheck.

My story is not so different from what I hear from other families. Far too many times I've heard of people resorting to buying insulin from the black market; swapping supplies from Facebook support groups; using expired insulin and test strips; trading sex for insulin; using pet insulin; starving themselves to reduce the number of units that they need; not paying their rent; rationing or skipping dosages, this allowing themselves only enough insulin to not die. Basically millions of people with diabetes are playing Russian roulette with their lives.

Parents are selling their homes, cashing in on their retirement and college funds, working two and three jobs, and selling their plasma. Young adults are dropping out of college. They're getting married just to have insurance or not getting married to the love of their lives because they'll lose their state funded insurance. I've heard of people with diabetes traveling to other countries to get their insulin. Some have even relocated to these countries. Many report stockpiling supplies and insulin, even expired insulin, just in case, because no one knows what the price of insulin is going to be next month. Some are even basically planning their own funerals because they cannot continue to pay the price of insulin.

Many will say that these companies offer assistance programs. Let me tell you about these programs from my experience. They have very long wait times, lots of paperwork that needs to be completed by patients, doctors, and pharmacist. And very few actually qualify for those because of income limits. These are nothing but hurdles and barriers for patients. A diabetic can only live one to two days without insulin and these programs take weeks or months to be approved. My concern is that they are creating these barriers as PR stunts to show that they care rather than simply lowering the price. Why should a person who requires the medication to live have to use a charity program or beg manufacturers for help? Why not just make your medication affordable for all? In my eyes if you have to offer these charity programs, helplines, and patient assistance programs, your company is fully aware that your product is too expensive. My response is: lower the list price. Big Pharma should not be allowed to put a price tag on our lives and we need for you to create and pass laws that protect us all from a certain death of corporate greed.

Our family and friends have paid the ultimate sacrifice in this health care crisis. And we lost an amazing young man. He has so many hopes and dreams and he left behind a five year old daughter now has to grow up without her father. His little brother lost his idol and his sister lost her best friend. My husband and myself lost our child. I want this crisis to come to an end. I want no other family to experience this great pain and loss. This should not have happened and I am counting on you all to help me make sure this does not happen to another family.

After Alec passed away, Nicole was determined to make sure that no one else would die from rationing their insulin. And she started in her own state of Minnesota by advocating for what was named the Alec Smith Insulin Affordability Act, which took effect on July 1st, 2020. She wanted there to be state-run insulin access programs that would fill the gaps from the ones pharmaceutical makers provide—the same ones that denied her son Alec. And because these programs would be written into law, the criteria wouldn’t change every year.

There are two parts to the bill: the first lets eligible Minnesota residents get a 30-day supply of insulin in an emergency. If you have less than a week of insulin left, you just have to answer 5 questions on a form and take it to your pharmacy, which can charge you up to $35 for the cost of dispensing it, but many aren’t charged a cent. The second part of the bill is a continuing need program that can supply up to a year of insulin costing no more than $50 every three months. That’s just $200 for a year of insulin compared to the over $14,000 you could be paying without insurance.

In its first 9 months, the bill provided emergency insulin to 294 people, and 230 people were accepted into the continuing need program. And rather than pass the cost of this insulin onto taxpayers, the bill stipulated that the pharmaceutical companies would pay for it. Obviously the insulin makers weren’t happy about that part. See, when they give insulin through their own patient assistance programs, they get to write it off on their taxes as a charitable contribution. But with these state programs, they don’t get to do that, they just have to supply the insulin to people who otherwise could not afford it. The trade organization that represents pharmaceutical companies, called PhRMA, sued Minnesota claiming that the law violated the Constitution by taking their property without compensation, but the case was dismissed by the U.S. District Judge, who said it needed to be filed in state, not federal court. PhRMA has yet to sue Minnesota again.

My name is Kathy Breen, I represent Maine Senate District 25, which includes six and a half communities in Cumberland County. And I'm here to introduce LD673: An Act to Create the Insulin Safety Net Program.

On April 13th, 2021, the Maine Legislature’s Health Coverage, Insurance, and Financial Services Committee heard testimony for a bill very similar to the one in Minnesota. Hilary Koch, whose son, Leo, was diagnosed with type 1 diabetes at two and a half years old, testified in support of the bill.

Hilary: Because I saw that people in the community were dying, because they didn't have access to insulin, and knew that my son was part of that community. But I didn't want my son to be an advocate. I wanted my son to just be a kid. And so Sarah, why don't you take it over from there?

Sarah: Okay, I'm Sarah Lukianov. I live in Bath, Maine, on the coast here. I've had type 1 diabetes for 24 years, this coming Memorial Day.

Craig: What did it feel like actually getting to log into zoom and talk about this bill in front of the committee?

Sarah: I had to actually mute part of Hilary's testimony because I knew I was gonna go soon and I was going to start sobbing Hearing everyone's stories, you know, we had such incredible people who are so brave to come and talk about people they've lost or struggles that they've had. And it was like, for me, having it for so long, it was like reliving these traumas over and over and over again. And that frustration just kind of swelling until like, how long do we have to beg at the altar here for help?

And that's the thing, there's such acute fear with having type 1, right like fear of breaking a vial, running out of it, going low, going high, getting ketones. There's just this pervasive fear that exists, whether you know, it's you, and Hillary, after talking to you and some other parents of type ones, you live with this fear. And we won't get away from that. That's always going to be there. But it can be alleviated.

Hilary: I didn't know how I could get the words out without being emotional. I can't feel what you feel, but my perspective is different because I feel like one mistake and I kill my son. That's the way a parent feels, right? So I felt incredible pressure with those three minutes to make every single word count.

Sarah: It was a really, really hard day. But I know we affected the committee. There were tears, so I knew they heard us. They were listening to the stories. Which is why what Beyond Type 1 did was an even greater gut punch.

Hilary: And so the way the legislature works is, if you submit written testimony in advance, that testimony goes online, it becomes public. And so I went online, just to look, and I saw Beyond Type 1 had submitted and I thought, Awesome!” Because you know, orgs never show up to support. They never show up to support these types of things. So I was thrilled. And I saw it and I was scanning through it really quickly and I just about fell over. And I think Sarah was the very first person that I texted.

Sarah: Yeah, I was sitting at my kitchen table, I think having coffee, and I had this moment where I was like, like, I couldn't compute. Like I read your text a couple of times. And I, just like, it wasn't processing. I was like “What? What do you mean?” And then you messaged and said, “They're basically saying it's redundant.”

Okay, so a little background on Beyond Type 1. They are a type 1 diabetes nonprofit based out of the San Francisco Bay Area that was co-founded by Nick Jonas in 2015—yes, Nick from the pop music boy band The Jonas Brothers. The one married to Priyanka Chopra.

In full disclosure, I used to be involved with Beyond Type 1. I co-founded a nonprofit that they absorbed and was put on their Leadership Council. When I saw that they started registering as lobbyist in several states, at the beginning of this year, I resigned.

Now originally, Beyond Type 1 specifically said that they would not accept money from the big three insulin makers so that they could stay objective when talking about the insulin pricing crisis. And that makes sense: if the companies that control the list price of insulin are giving you money, you’re much more likely to hold your punches against them because you don’t want them to stop giving you money. And this was also a distinct contrast from the two biggest type 1 diabetes nonprofits, JDRF and the American Diabetes Association, who both have received millions of dollars from insulin makers and whom advocates criticize for not calling insulin makers out for setting the high list price of insulin.

So when Beyond Type 1’s second CEO took over in 2019, it came as quite a shock that one of his first acts was to change this policy without explaining how they were going to keep staying objective. On their website, all Beyond Type 1 says is that these partnerships “Do not eliminate the ability to put pressure on these same companies.” With that pharmaceutical corporation money, they built a website called GetInsulin.org that lets you explore what patient assistance programs you qualify for based on your location, insurance coverage, and income. Now, the website doesn’t alleviate any of the problems with patient assistance programs, which the bill in Maine is trying to fix, it just tells you that they exist and gives you a link to them.

In Beyond Type 1’s letter to Maine, they argued that the emergency insulin and patient assistance programs that would be created by this bill were redundant to the ones that insulin makers already provide. Eli Lilly, one of the insulin makers who sponsors Beyond Type 1, also submitted written testimony saying the same thing.

Hilary: I don't know if you've used these programs before, but we know that these programs don't work. They work for some people, but they don't always work. If their patient assistance programs worked, people wouldn't be dying. It's as simple as that.

While the pharmaceutical companies’ patient assistance programs look similar to the ones in LD673, they’re not exactly the same. For instance, Eli Lilly won’t approve you unless you’re uninsured or have Medicare Part D, whereas Maine’s bill lets you enroll if you are on an insurance plan that costs you more than $75 a month for a 30-day supply of insulin. Maine also requires the pharmaceutical corporations to respond to your application within a certain number of days and allows you to appeal if you’ve been denied. But the most important difference is that, like in Minnesota, LD673 requires, by law, these programs to exist. You can’t just wake up one day and find out the pharmaceutical companies changed or cancelled the programs you rely on to get insulin.

Hilary: Lawmakers need to ask themselves, you know, whether they're going to choose between Mainers and pharma in these bills. And I think we should be asking organizations the very same question. And that question is: they can choose patients or they can choose pharma. And their actions reveal what their choices are. And last week, this letter reveals a choice to put pharma first.

Sarah: There's a level of privilege, right? Their whole kind of ethos is kind of centered around that. So they don't understand what we need in Maine, what would be helpful here. And so I just felt so frustrated, I just can't make sense of it. But I understand there’s a puppeteer above them working the strings. And it's just so obvious. And the fact that the testimony is signed by their chief advocacy person, whatever. What are they advocating for?

What concerns me too is, this is just in Maine. There are other states working on, you know, this type of bill, I am positive Beyond Type 1 is also going to submit something to those states. You know, I honestly hope that other folks who sponsor them pull out as a result of this. You know, if they have the big three, good, go for them, go lobby on behalf of them. I see this as unforgivable, what they've done.

Craig: Can you claim yourself to be advocating for people with type one if you're not advocating for insulin for all?

Sarah: I think no. Again, it's the most basic thing we need. I mean, community is wonderful. I know Beyond Type 1 has done great things for that, you know, connecting people. Which is really, really powerful with a disease that can be incredibly isolating. And I know there are other things that they're involved in. But I think that is the one pillar that every organization should be moving toward, and if they're working against it, what is their purpose? I think everything else pales. I know they do other great things, but I think everything else pales if they're actively working against that one essential mission.

Hilary: If your mission is really to be fighting for people with type one diabetes, I don't think that you can ignore insulin for all, you just can't. You can't. You have people dying because they can't afford insulin.

You know, when Leo was diagnosed, we were desperate to look for role models for him. Nick Jonas was someone who we used, right? We had Nick Jonas posters on his room for years. We bought a ton of like Jonas Brothers music. Oh my gosh, we listened to so much of it when he was a kid. And when he started Beyond Type 1, we thought it was great. But I sincerely believe that he is so wholly disconnected from the reality, the struggles that people have with the most basic, basic thing to survive. I say your right to breathe air is a given, but my son's right to insulin is not, right? I’d love to have a conversation with him behind closed doors. As a mother of a child who grew up just worshiping him to say, “What's wrong with you? It's time to grow up and be a man and do something about this.” I'd love to do that.

Craig: Can we do that right now? If Nick Jonas is listening to this, what would you want to say to him?

Hilary: I would say that you definitely have the fear that Sarah spoke about. I know you have those fears. And you hide them really well. And for so many years, my family has been grateful for you willing to share your story, as much as you were willing. But there is a side of type 1 diabetes that you simply don't understand. And the community could really, really use your voice. It needs your voice. But you're simply not hearing it. And your organization has really hurt my state and potentially hurts so many Mainers and potentially put my son's life at risk. So I would love to invite you to have a conversation with me to talk more about what you could do to really fight for insulin for all. Because pharma is not going to do anything. And it doesn't seem like our government wants to do anything. But patients want to do something when we could use your help.

Craig: Sarah, if you could have a direct line to Nick, what would you say?

Sarah: Well, I would tell him, Nicholas, I actually saw you play live at a show upstairs at the Middle East in Cambridge, Massachusetts back in the mid 2000s. My friend of a friend opened for them. It was a tiny stage, tiny stage. There might have been like 15 of us in the audience, most of whom were a little like tweenage girls, it was very cute. And these three young boys got on the stage. And I was like, gosh, they're talented, look how cute they are. This is awesome. And then the next year they were on the Disney Channel. And it was wild. And if I had known he had had type 1 then, if I had seen a Dexcom or something, I would have been so pumped. I would’ve talked to him and been like, “It's gonna be—you're going to be fine”, because he's a little bit younger than me.

I don't know. I would just tell him to remember what it was like back then. What happened when you were low during those shows? What happened when you were high during those shows from the adrenaline? Like, remember what that was, like, just being a kid with type 1 and trying to live your life in spite of it. Most of us are still there. Stuck at that point forever. You know, nobody's lining our pockets. We're not on Dexcom commercials. We're not figureheads. You know, we're just trying to still be those kids trying to live our lives and we'll always be like that. So I don't know. if you want to be the most rock star thing you can do, right, is damn the man. So help us to damn the man, you know, and hurt Big Pharma.

I reached out to Beyond Type 1 for comment about their letter. They did not reply.