Dan Gorenstein: Over the last 10 years, insulin prices have climbed by at least 103%.

Right now a month’s supply can run anywhere from $300 $100 to $1,000.

The ballooning costs have made it difficult for some to access this drug that millions of diabetics need to manage their condition.  

Lawmakers in Congress have introduced legislation in each of the last three years to tackle rising prices. 

And bipartisan momentum appears to be building. 

Today we discuss lawmakers’ latest push to address insulin prices with Kaiser Health News reporter Bram Sable-Smith.

He’s been following the cost conundrum of insulin for years as part of his job and as someone who lives with diabetes.  

I’m Dan Gorenstein. This is Tradeoffs.

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DG: In 2011, Bram was an undergrad. 

After spending time abroad, he returned to the U.S. and noticed many of the health inequities he saw in developing countries were happening here too.  

He helped organize a community health fair and — feeling young and strong — wanted to test his own health. 

Bram Sable-Smith: I was like, ‘Well, I’m going to do all these screenings to prove how healthy I was.’ 

DG: He walked over to a booth where some first-year medical students were testing participants’ blood sugar levels.  

The students looked confused by Bram’s results.

He figured there was a problem with the test. 

They ran it again. This time, the students’ expressions changed from confusion to concern.

They weren’t sure what to do. 

BSS: So they called over their supervisor, who was a second year medical student, and he knew what to do, which was tell me to go see the doctor.

DG: That’s how Bram found out he had Type 1 diabetes. His body had stopped producing the hormone insulin.

Doctors told him he would have to take the drug everyday for the rest of his life. 

DG: About 1.5 million people in the U.S. are diagnosed with diabetes each year. 

More than 37 million in the country have the disease, and a third of them take insulin to manage their condition.

A little over 10 years ago, when Bram was first diagnosed, the average price of an insulin prescription was $334. It has more than doubled since then.

Lawmakers at the state and federal level have seized on that price spike. 

20 states have passed legislation to cap co-pay costs for insured patients, and lawmakers in Washington are pushing their own bills. 

Senate Majority Leader Chuck Schumer: As Majority Leader, I will do everything I can to get the cost of insulin down to $35 an injection

DG: But to understand the bills kicking around in Congress, it’ll help to go over a few basic diabetes facts.

So Bram, let’s try to cover some of these basics lightning-round style. We know that about 1 in 10 Americans has diabetes. What is this disease?

BSS: So diabetes essentially means that your body either totally stopped producing insulin if you’re a Type 1 diabetic or you have some really extreme insulin resistance. 

DG: Right, and that’s people with Type 2 diabetes. And for the diabetics that need insulin, what does it actually do?

BSS: Insulin is a hormone that body’s produce that turns sugar into energy. And with Type 1 diabetics, our bodies no longer make insulin, and we have to inject ourselves with it. With Type 2 diabetics, you become resistant to insulin and some people take insulin injections. 

DG: Ok, so our bodies need insulin to turn sugar into energy. What happens when insulin isn’t working as it should?

BSS: When insulin is not working in your body or you’re not producing insulin or you’re not injecting yourself with insulin, in my case, that means that your blood sugar is going to rise. It’s extremely dangerous. I mean, your blood turns to acid, it erodes your organs, and you die.

DG: Now that we understand the mechanics of this disease, let’s talk about insulin economics, which plays a big role in the legislation cooking in Congress.   

So there are three major insulin makers, Eli Lilly, Novo Nordisk and Sanofi. 

A RAND report found that the per unit price of insulin is 7 times higher than in other countries around the world.

Why does it cost so much here?

BSS: Well, the manufacturers, the insurers, the middlemen, they’re playing this high level game. And that’s what the list price of insulin is all about. It’s about this high stakes game of insurers wanting to pay as little as possible and manufacturers wanting to make as much as possible.

DG: How does the game work?

How do insurers and manufacturers interact to set prices?

BSS: So you have these insurers who have millions of customers. And they say to the manufacturers, the insulin manufacturers, that, you know, hey, we’ll cover your drug, we’ll make you the preferred insulin on our list. But we want a good deal. We want a good price. And they’re not negotiating that themselves there. That negotiation is being done by these middlemen.

DG: Right, the good old pharmacy benefit managers. Bram, can you explain how the pharmacy benefit managers are getting paid here?

BSS: They get these things called rebates from the manufacturers. They pass some or all of it back to the insurer. And that’s how this price negotiation happens. And for patients, especially uninsured patients or underinsured patients, they’re not really part of that calculation.

DG: Got it.

And how does this push and pull of price negotiations between manufacturers, pharmacy benefit managers and insurance companies trickle down and impact what patients, like you, pay?

BSS: Well at some point, a diabetic like me is going to have to go to the pharmacy and buy insulin, and I’m going to have to pay a price. And the price that I pay very much depends on my insurance situation. You know, there’s these things called co-pays. That’s the amount that the patient is on the hook for with their insurance. And your co-pays can fluctuate. I mean, right now my co-pay is $25 a month. It’s a set price per month. In the past, I’ve had co-pays that were percentages. 

DG: Right, that’s called co-insurance. The insurance company covers a percentage of the actual cost of the drug, and the patient pays the rest out of pocket.

As you were saying, that amount varies depending on the price of the drug 

BSS: Exactly so in the past, I was paying consistently $80 a month for insulin. One time I went to the pharmacy to refill my insulin prescription, the pharmacist looked at the price that I was being charged and apologized because it was, you know, kissing $200.

DG: So that’s people with insurance.

And people without insurance are exposed to the full price. 

Like, if the sticker price is $1,000 a month, they’re on the hook for the full $1,000 for a drug they NEED to live?

BSS: That’s right. The problem happens when people without insurance are exposed to those list prices that they were never supposed to interact with in the first place.

DG: Insulin manufacturers have created emergency assistance programs for people struggling to afford the drug. Critics say these types of programs are smokescreens that keep prices high. 

The economic trouble people have buying insulin is getting more and more attention. 

A Yale study found one in four people skimp on the drug due to its high cost.

Bram, you’ve written how going without insulin or rationing it to make a supply stretch can be fatal. 

You did that really strong story in 2018 about this and what happened to 26-year-old Alec Smith, of Minnesota.

He was a Type 1 diabetic that aged off of his parents’ insurance plan and made about $35,000 a year working at a restaurant. 

What happened to Alec, Bram?

BSS: He shopped around for an insurance plan of his own. It was going to be really expensive, so he decided to go without insurance. That exposed him to the list price of insulin. He couldn’t afford the insulin he needed. He was rationing his insulin. And he ended up dying. So that’s kind of the really extreme of what happens when people are exposed to list prices that are this high for something that’s this necessary to live.

DG: This story captured headlines across the country.

How much impact did Alec’s story have?

BSS: I think it was huge. Alec’s story was not the only story that was circulating widely at the time, but it was one of kind of a handful of stories about Type 1 diabetics  who could not afford their insulin, who ended up dying. These people who I kind of call them, I kind of call them Diabetes Twitter, they were really forming at the same time as well. These are people tweeting under the hashtag #insulinforall. These are people raising awareness about insulin prices.

DG: Sounds like Alec’s story and these others helped this issue of insulin dependent people go from the shadows to the spotlight. 

BSS: You know, when Amy Klobuchar, the senator from Minnesota, announced her campaign for the presidency in 2020, she had Alec Smith’s mom right there with her. So within two years between Alec Smith’s death and the 2020 presidential election, this went from an issue that, you know, people weren’t really talking about in a significant way politically to an issue that people were launching their presidential campaigns on.

DG: When we come back, we’ll explore the latest round of federal legislation aimed at addressing insulin prices.

***MIDROLL***

DG: Welcome back. 

Momentum in Washington appears to be building to do something about the high price of insulin. 

To that end, the House passed The Affordable Insulin Now Act in late March.

It would cap the copayment for insured patients at $35 a month for the drug. The legislation would take effect next year.

So Bram, you’ve been following this bill.  

And while it sounds pretty straight-forward, there are a couple of wrinkles worth talking about. 

But first, is this bill perceived as a win for the people advocating for lower insulin prices?

BSS: Look, I don’t want to understate the impact that this bill would have for some patients. If you’re paying $80 a month for insulin like I used to do, if you’re paying $200 a month for your insulin, this is going to lower that co-payment down to $35. That’s real money that people are saving. But it’s people who are insured. If you’re not insured, a cap on the co-payments doesn’t touch you.

DG: Right, if you are uninsured you will still pay the full price, regardless. 

But Bram, when you cap the costs for people who buy insulin, that means everybody who has insurance will help subsidize the cost. 

Can you walk us through how that works. 

BSS: So let’s talk about insurance real quick. If I was paying $80 a month for insulin, that was the portion that I was paying and my insurance was paying the rest. And then that cost that I’m paying out of pocket goes down to $35, someone else has to pick up that $45 that isn’t getting paid by me anymore. And the entity picking up that $45 is the insurance company.

DG: Yeah, I know the Congressional Budget Office scored this bill, saying it would increase Medicare spending.

BSS: Right, so now we talk about Medicare. If your co-payments going down, it’s Medicare who’s picking up that extra bill. So that’s how you would see Medicare prices increasing. The other thing to note is that, you know, you talk to any health economists, and you talk to many, Dan, they’ll tell you that these insurance companies are not just going to pay that extra $45 or pay that extra amount and move on with their day. They’re going to try to recoup that extra costs that they’re now spending by doing things like increasing the premiums, the monthly premiums that everybody pays for insurance.

DG: Ok. But the thing missing in this bill, right, is that it doesn’t do anything about the super high price of insulin — again — seven times what people in other countries are paying. 

But that’s where the Senate comes in. 

There’s a bipartisan bill sponsored by Republican Susan Collins of Maine and Democrat Jeanne Shaheen from New Hampshire that aims to tackle the price. 

What do we know about this measure?

BSS: I should caveat that I haven’t seen a text for it because they’re still talking about it. It’s still in the ideas phase. They want to target the sticker price of insulin that the drug maker is charging. They want insulin manufacturers to reduce their list prices to the level they were at 2006. And then after that, they would only be able to raise the price of insulin in accordance with inflation.

DG: So they’re targeting the list price of insulin by giving manufacturers the opportunity to not have to pay rebates pharmacy benefit managers. Essentially one less party is making a profit off of the drug sale, so that should help control the price of it? 

BSS: I think it’s a really fascinating idea in a sense. It’s sort of saying, ‘OK, insulin manufacturers, you say that the list prices are high because you’re having to pay these middlemen, these rebates. Well, what if you didn’t have to pay them? Would insulin prices go down?’

So it’s offering that incentive for these insulin manufacturers to reduce the sticker price that they’re charging for insulin, which would reduce the price that uninsured patients are exposed to. 

DG: This whole conversation has been focused on insulin. We’re seeing Republicans and Democrats alike rally behind trying to find a solution. 

Final question, Bram. 

Lots of drugs are expensive — why is insulin getting all the attention? 

BSS: Insulin, in many ways, is a useful, salient poster child. The stakes are extremely high. The stakes are life and death. If you can’t afford insulin, you die if you’re a Type 1 diabetic. But this is how we set drug prices in the United States. This is how our system works. That’s what’s at play here: the system, the structures that we have in place for how drug prices and drug costs get set and who pays them.

DG: Bram, thank you very much for taking the time to talk to us on Tradeoffs. I appreciate it so much.

BSS: Long time, first time, Dan, happy to be here.

DG: I’m Dan Gorenstein. This is Tradeoffs.

Tradeoffs’ coverage of health care costs is supported, in part, by Arnold Ventures and West Health.