Diabetes is a major health challenge in the U.S. About 30 million Americans are diagnosed with diabetes, and the American Diabetes Association estimates several million more are undiagnosed. Millions of people with diabetes use insulin to control their condition, and the cost of insulin has been rising dramatically. In response, 18 states have implemented laws limiting the amount a health plan can charge a patient for insulin. Other states have created patient assistance programs or ensured payments made on behalf of a patient are applied solely to the patient’s out-of-pocket costs. The guests on this podcast—Delegate Matthew Rohrbach of West Virginia and Rep. Michael Howard of Minnesota—both carried legislation in their states to help patients afford their medication. They discussed the details of their legislation and the challenges in passing it. They also shared advice for other legislators who are working on the issue.
Ed: Hello and welcome to “Our America States." A podcast from the National Conference of State Legislatures. This podcast is all about legislatures, the people in them, the policies, process, and politics that shape them. I am your host, Ed Smith.
MR: “And I've been a practicing physician since 1984 so I have obviously dealt with a lot of diabetic patients. “
MH: “Alec began rationing his insulin and he passed away at the age of 27 unable to afford a medication that he needed to survive.”
Ed: That was Delegate Matthew Rohrbach, a Republican from West Virginia, and Representative Michael Howard, a Democrat from Minnesota. They are my guests on the podcast.
Diabetes is a major health challenge in the U.S. About 30 million Americans are diagnosed with diabetes and the American Diabetes Association estimates several million more are undiagnosed. Millions of people with diabetes use insulin to control their condition. And the cost of insulin has been rising dramatically. In response, 19 states have implemented laws limiting the amount a health plan can charge a patient for insulin. Other states have created patience assistance programs or insured payments made on the behalf of a patient are applied solely to the patient's out of pocket costs.
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Rohrbach and Howard both pushed legislation in their states to help patients afford their medication. They discussed the details at their legislation and the challenges in passing it. They also shared advise for other legislatures who are working on the issue. Here's our discission starting with Delegate Rohrbach.
Delegate Rohrbach, thanks for coming on the podcast.
MR: Well, thank you for having me.
Ed: To start, could explain how you came to get involved in this issue of insulin affordability and describe the legislation in your state.
MR: Well, I have been a practicing physician since 1984 so I have obviously dealt with a lot of diabetic patients and as a gastroenterologist, I do see a lot of complications of diabetes. It's a very important issue to me and it always has been. Now the legislation that we just passed, there's three parts to it. The first part was a cap on the cost sharing otherwise known as co-pays for insulin itself. We had a cap of $100.00. We lowered that to $35.00. Then the second part is we added to that two things. The first was a cap on supplies. So, this would be continuous glucose monitors, glucometers, test strips, lancets. Things of that nature. That cap is at $100 per month. And then the third thing we did is we added a cap on insulin pumps at $250 one time every two years. So, if you lose the pump or you know whatever, it's … you are on your own if the two years hasn't expired. That's between you and the insurance company.
Ed: As you mentioned, you are a physician. You've had a lot of patients with diabetes. How has the landscape changed in terms of the cost of insulin and these other materials since you started your practice in 1984?
MR: Oh gosh. Well, the cost has gone up astronomically. And it's interesting that you ask because I'm old enough to remember the old porcine or pork insulin. Now we really have through frankly innovations in the pharmaceutical industry, we have a lot better forms of insulin. We have intermediate acting, short acting, long acting. We've made them where they are human analogs, so we don't have the old antibodies that you used to get from a porcine insulin, so they are much better. There's no question about it. And then the other thing that has had tremendous advances, insulin pumps and continuous glucose monitors. You know with the continuous glucose monitor now that you change every four days, you can actually just hold your cell phone now and see what your glucose is in real time. So, people have much better access to technology, and this is technology, and this is one area of therapeutics where the technology and the pharmacology have really meshed to make a lot of advancements. There's no doubt about it. So, people that want to stay very stringent in their glucose control have those opportunities.
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Ed: I know different states have taken different approaches to this issue. Did you consider alternatives and why did you take the path you did?
MR: Well, we did look at some other alternatives, but I think caps on the co-pays seemed to be the fairest way that we could come up with. And frankly, that seems to be what a lot of the states are doing. So that seemed to be a very fair system for our underinsured, that seemed to help them the most. If they have insurance, but maybe its not the greatest in the world, but now there is a cap on the co-pays.
Ed: I understand a biosimilar or generic form of insulin was approved last summer. How does the affect the situation? Significantly or maybe not so much.
MR: I think not as much as what people would let on. If it's an equivalent bio similar, it really should work as well. Now discouragingly, the cost of generics is gone up very high now. And honestly it may not be that much different than the branded material. But as far as the efficacy, the biosimilars should be equally effective with the brand name products.
Ed: Given your long experience dealing with this issue, what's your most pressing concern around insulin?
MR: My most pressing concern is that people get access and education. That's the key thing because really the advances in the technology have been enormous in my 40 years of medicine. Just enormous. I know we are all quick to blame the pharmaceutical industry and there's problems and reasons for that, but in this instance, they really have moved the needle. So, we've got to get greater adoption of what they have really come up with because pumps and continuous glucose monitors and just all of the new forms of insulin, we really can keep people under excellent control. And the advantage for all of us to do that is you don't see all the in-organ damage that you see from diabetes. So, you don't hopefully see the heart disease, the cerebral vascular disease, the hypertension, the diabetic keto acidosis. The list just goes on and on of thing that we should be able to avoid given what we've got now.
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Ed: We love to talk about lessons learned on this podcast. As we wrap up, I wonder if you could share some advice with your colleagues around the country who might be tackling this challenge themselves.
MR: The biggest thing is this was a terrible bipartisan effort. I mean there was really no partisan politics in this. Every legislator in every state has numerous diabetic patients so that they … don't think that anybody is not without a constituency in their districts that would benefit from this. Don't be afraid to tackle this issue because it is needed. And then, a lot of the people say well you know it costs some money and insurance rates may go up. You know we didn't really get any pushback from the insurance companies and I'll tell you why. Because it’s the old pay me now or pay me later theory. I think they realize if they can get better adaptation of the newer technology into patient's hands, and they will use it. Yeah, it may cost them a little bit more upfront if you are the insurance company. But down the road, all the savings that accumulate from not having all this in organ failure. Diabetes is the No. 1 cause for kidney transplantation from renal failure. All of that. Dialysis. Just the savings down the road are enormous compared to the small costs now. So, I think this is a bill that you know health industry and insurance industry can both kind of get behind and people of all political spectrums can get behind this. So, we really didn't run into a lot of headways. As a matter of fact, I was surprised at how little. We didn't meet any opposition from the insurance industry so it's this is one of those bills that I would just urge my colleagues around the country not to be afraid to take on.
Ed: Delegate Rohrbach, thanks so much for sharing your perspective on this topic. Take care.
I'll be back right after this with Representative Michael Howard of Minnesota to talk about how he approached this issue in his state.
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Ed: Representative Howard, thank you for coming on the podcast.
MH: Thank you. I'm glad to be here.
Ed: I spoke with Delegate Matthew Rohrbach from West Virginia earlier in the show and he explained the legislation in his state. I wonder if you could tell our listeners how you got involved in this issue and the key aspects of the legislation there in Minnesota.
MH: You know I really didn't know much about insulin or care for diabetics until I picked up a newspaper and read a story from my own neighborhood, my own community. And heard the story about Alec Smith who at the age of 26 aged off of his parent's health insurance. He was a type I diabetic and could not afford the insurance to cover his insulin and decided to pay for it out of pocket. Alec began rationing his insulin and he passed away at the age of 27 unable to afford a medication that he needed to survive. It's a terrible tragedy. It should not ever happen in this country. I'm working with Alec's parents Nicole and James. We set out to pass a law here in Minnesota [based on the] the premise no one should ever lose their life because they cannot afford the insulin they need to survive. And that is what our bill accomplishes in a variety of mechanisms.
Ed: Well, it's interesting how people come to this issue in different ways. I wonder as you became interested in this and came to understand what the history of insulin affordability was in your State, how has it changed? Is it a lot different now than it was a couple of decades ago?
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MH: Well, it's a great question because in some sense the insulin that folks use to manage their diabetes, that hasn't changed very much at all in the last 20 years. Essentially the same insulin that folks used to manage their diabetes you know in the 1990s is the insulin that you'd use now. But has changed is the price. We've seen a 1200% percent increase in the listed price of insulin. It's tripled in the last 10 years so much so that a vial of insulin, the list price that used to be about $20 or $30 is now well over $300. We could do a whole podcast on the sort of broken nature of our prescription drug system in this country, but at the end of the day, the problem is that three insulin manufacturers control the global supply of insulin. And these are the … that have realized the billions in profits and frankly coordinated over the years to continue to increase the price of insulin. And you know, they have a captive market. If you have type I diabetes, you need insulin to survive. It is like air. It is like water. And so, it is just then something that has gone up and up to the point to point that Minnesotans and Americans are choosing what's not in their best health interest because they simply can't afford it.
Ed: Well, given that marketplace, I wonder what kind of challenges or obstacles you face there in Minnesota as you try to get this legislation enacted.
MH: We did face opposition in part because one of the principles that we entered into when we filed for Alec's law is that we really believe that the insulin manufacturers that have profited as folks have struggled to afford their insulin that they had a role in this solution. They've increased the price to a point that it is completely unaffordable. They need to have some stake in the game to solve this problem. And so, under our law, we said that those manufacturers, they need to either provide the insulin as part of this insulin safety net program or pay for it basically to make sure that those that have profited are participating in the solution and you can bet, we did face some opposition from the drug manufacturers with that approach.
Ed: Now I know some different states have taken different approaches. In fact, I think West Virginia took a different approach than Minnesota did. And I wonder why you went the way you did. Why you thought that would work best for the folks in Minnesota?
MH: Well, there's a couple of different ways states have focused on insulin affordability. One tool has been price caps on insurance plans and you know, that's a valuable tool in that if you have insurance you know to cap an amount so we have dependability's so folks they walk into a pharmacy and they can know they are going to be able to afford their insulin. We started in Minnesota really looking at Alec's situation. He is somebody that sort of fell through the cracks and he earned just enough income where the health insurance plans that were available to him were not affordable. Yet his income did not afford him. He was a restaurant manager. It did not afford him the ability to really afford the massive out-of-pocket costs. And so, we wanted to first start with a safety net making sure that if you were in an emergent need of insulin, you could walk into your pharmacy. You could get a supply of insulin no matter what. Whether you are insured. Whether you are uninsured. And create that true safety net as a life saving measure.
All along we sort of said this should be the bare minimum. You know, in a sense, this law should be the bare minimum and we should ensure that no one loses their life because they can't afford it. In a lot of ways, the state should be employing multiple tools both what we employed here in Minnesota and what other states have done on the insurance side.
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Ed: As you look forward, is cost the biggest concern about insulin or not? Do you have concerns about supplies or other materials that people need? What would be your biggest concern going forward on this?
MH: It really feels like the cost has been driving a lot of the conversation for the medication for insulin in the last couple of years. And I'm really grateful to see states all across the country sort of pick up the mantel … the amazing leadership of Nicole … and sort of her advocates that are pushing this. But as folks are looking in, it is beyond cost. One of the things that is a driver of cost to manage diabetes is the cost of supplies like a continuous glucose monitor which the advances in technology in recent years has greatly helped patients manage their diabetes. Unfortunately, what we are hearing is that the highest level of technology these monitors are also growing incredibly expensive to the point where some folks are choosing a lesser method of management and it's not something their doctor would prefer. But they have to choose something that is less expensive. We should look at that as well. We are in the process of drafting legislation here in Minnesota. It feels like a good evolution that we've seen caps on the price of insulin, and I think we should look at caps on some of the costs of supplies as well. It shouldn't be unaffordable to manage a disease like Type I diabetes that is … if you are not on top of it, you are going to end up in an emergency room or worse. That is just not an outcome we should accept for anyone.
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Ed: Well as we get ready to wrap up here, one thing we always like to ask our guests is lessons learned. What would you share with other legislators across the country if they are taking on this issue trying to craft legislation?
MH: The No. 1 one lesson I learned is the power of your constituents leading a fight. There is no way we would have been successful going up against these mega drug companies and special interests if not for really a handful of mighty advocates like Nicole and several other Minnesotans that came, shared their stories of their families … personal stories and you know intentionally. We let those stories lead the public discussion and it was incredibly powerful. And it was that public pressure that built the pressure on the legislature to take action. Crafting a deal behind closed doors is not the way to be successful against big special interests. It's to have a conversation out in the public domain. And so, my biggest advice is to lean on the stories of your constituents and work hand-in-hand. Individual stories can be a very powerful force to get legislation across the finish line.
Ed: Yeah, I would agree a well-told story from the right people can be an incredibly effective persuader for legislators.
Rep. Howard, thanks for sharing your experience and insight on this issue. Take care.
If you’d like to learn more about this issue, NCSL is tracking the multiple approaches states are taking and we encourage you to check out NCSL’s prescription Drug Database at ncsl.org.
And that concludes this episode of our podcast. We encourage you to review and rate NCSL Podcasts on Apple Podcasts, Google Play, Pocket Cast, Stitcher or Spotify. We also encourage you to check out our other Podcasts: Legislatures the Inside Story and the special series Building Democracy. Thanks for listening.
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MUSIC
MR = Delegate Matthew Rohrbach
MH = Representative Michael Howard