“ …is insulin a right? Or is it a privilege? In my opinion, and for the Canadian scientists who discovered insulin, it is a right. “
In this week's episode we will be speaking with Dr. Irl Hirsch about the high costs of insulin. Dr. Hirsch will discuss the struggles that people with type 1 diabetes face because the cost of insulin has increased to an untouchable point, which forces people to find alternative ways to save money. We will also be talking about the politicization of insulin costs and who's really to blame.
Dr. Hirsch received his medical degree from the University of Missouri School of Medicine in 1984. He completed residency training in internal medicine at the University of Miami, in Miami, Florida and Mount Sinai Hospital in Miami Beach, Florida and a research fellowship at Washington University School of Medicine in St. Louis.
From both a research and teaching point of view, Dr. Hirsch’s career has focused on studying the best strategies for the use of insulin therapy in both type 1 and type 2 diabetes. More recently, he has become involved with artificial pancreas technology and better understanding on the limitations of diabetes biomarkers. With regards to patient care, most patients in his practice have type 1 diabetes or atypical forms of diabetes. Over the years, he has been a passionate advocate for patients ensuring access and affordability for glucose monitoring technology and in the past decade, insulin. Dr. Hirsch has authored more than 250 research papers, more than 60 editorials (including the New England Journal of Medicine and JAMA), and numerous book chapters in addition to six books for patients and physicians
Dr. Hirsch is the former chair of the Professional Practice Committee for the American Diabetes Association and has served as editor-in-chief of two ADA journals, “Clinical Diabetes” and “DOC News”. He is an Associate Editor of “Diabetes Technology and Therapeutics” and has been on the editorial board of “Diabetes Care”. He has also served as a member of the American Board of Internal Medicine.
Shireen: Podcasting from Dallas, Texas, I am Shireen and this is the Yumlish podcast. Yumlish Is working to empower you to take charge of your health through diet and exercise and reduce the risk of chronic conditions like type two diabetes and heart disease. We hope to share a unique perspective and a culturally relevant approach to managing these chronic conditions with you each week.
In this week's episode, we will be speaking to Dr. Irl Hirsch about the high cost of insulin. Dr. Hirsch will discuss the struggles that people with type one and type two diabetes face because of this increase in cost of insulin. He will also speak about a recent Senate bill that passed, but at the nth hour, it took out the pricing cap for insulin and what that means for people with diabetes.
Dr. Hirsch received his medical degree from the University of Missouri School of Medicine in 1984. From both a research and teaching point of view, Dr. Hirsch's career has focused on studying the best strategies for the use of insulin therapy in both type one and type two diabetes. Welcome Dr. Hirsch.
Hirsch: Thank you for having me.
Shireen: An absolute pleasure.
So Dr. Hirsch diving right in, help us understand a little bit more about your background. Why did you, what exactly did you go into the space? What was it about diabetes?
Hirsch: Well, there's many different layers to answer that question, but I realized even as a medical student, we did not do as well as I felt the research had us at the time. I myself had diabetes since I was six, my brother, since he was fifteen and my nephew, since he was three.
Between the three of us, there's over a century of diabetes. And I felt that from both a practical point of view, and then as I got more into the research setting, that we could do something to improve the lives of people, especially with insulin, but later technology. And I should point out. The other drugs for treating type two diabetes has also become a real interest of mine, drugs that not only treat the glucose, but also treat the cardiovascular and the renal complications.
So from a lot of different perspectives, I have found this to be fascinating. And I think it's because we started from such humble beginnings.
Shireen: I, I do wanna take a minute and let our audience know here that we are recording this interview on August 8th. First let's just start up with everything that's been going on in the news recently, Dr.
Hirsch. So let's start with, what are some of the reasons you believe insulin access has gotten political? And then I wanna drive to historic landmark that did, or actually did not happen this weekend. So we'll come to that in just a second, but first help us understand just the political landscape that is insulin access, right now.
Hirsch: One could actually consider insulin access. And the fact that it's become political, it's really been like that for the last 101 years. The fact that the patent for insulin was sold from the University of Toronto, to the manufacturers of insulin. Initially here in the United States at Eli Lilly for $1, the spirit of that was that,
insulin would be accessible for everybody, but obviously that's not what happened in the 1920s, the 1930s, and still today in fact, until very recently in the low and mid income countries having a child with type one diabetes was essentially a death sentence. And until recently, Those children typically did not survive for a year.
But in the high income countries, like the United States, the fact that our system here and we're gonna focus just on the U.S. For a moment because each country does this differently. But if we just focus on the U.S., We don't have a national healthcare. People can charge what they want to for the insulin.
And our healthcare system is so difficult because there are so many different components to it. And in 20 to 22 minutes, we don't have enough time to really talk about how complicated it is. But if you get your insulin from the VA system or from Medicare or a Medicaid state or a regular third-party commercial payer.
You're gonna pay different amounts of money for that. And it became political, really became super political within the last, I would say 15 to 20 years when the prices of the insulin got to be so high, that is the retail price, but not everybody paid the retail price and it depended on what one's insurance was.
And eventually it got to the point that people started rationing their insulin. And even before that people would complain to their senators and their congressmen and their congresswomen, and then their state representatives. But there was very good all they could do because the system had become so dysfunctional and people ended up having to pay full price for the insulin, which.
Is enormous. In fact right now it is enormous. If you're paying retail, but the politicians were brought in because there were all of these people making so much money on these families who were just trying to keep their families and especially their children alive. And it, it, wasn't supposed to be that way when insulin, when the patent for insulin was sold for a dollar, but at the end of the day,
there's a very complex system where we have the drug manufacturer. We have these middlemen are the pharmacy benefit managers and the pharmacies. And we have the the payer and we have the patient. And, and as it turns out, these middle men and middle women, the pharmacy benefit managers, they're the ones that are making all of the money.
At least they are the ones who've had the greatest increase in their money in the past five to 10 years. And what's been amazing about this story is that the pharmaceutical companies they're still making money, but their profits have actually gone down. Their profits have gone down. It's these middlemen that have not been touched, and politicians have not done enough in most of our views to these middle men, these pharmacy benefit managers. And they're the ones who really set the price for the patients. And it's, it's, it's very complicated, but it needs to be pointed out that the big other part of this, we have the drug manufacturers, we have the middle men and middle women, but then we also have the politicians.
And the politicians are really important as you note it today is August 8th, 2022, because as it turns out, the politicians get lobbying money and it's not very transparent where all the lobbying money comes from. What we do know from this one source called the web site is wanna make sure I, I say it right if, and, and I can't remember it now.
I can't remember this important website, but you can see who's getting money from who and, and what I can tell you is, is that for the three main pharmaceutical companies, and this is not just relegated to insulin, but they are in the top 25 companies that use lobbying money, to the senators and the congressmen and the congresswomen.
And, and I, I have a problem with this at many levels because I don't quite understand what lobbying money does other than to use the word bribery. And the reason why that became so important yesterday, which was August 7th, is that in part of this very large healthcare benefits. That was first proposed by the president and was passed by Congress.
When it got to the Senate yesterday, there was a ruling so that they needed to have 10 senators passed this for this to happen for the non-Medicare patients. And it didn't happen. Which means there won't be any there won't be any cap on insulin prices for most of the country, the millions of people who take insulin who are pay, who are insured by the third party payers, the other really important group of people to think about,
and, and it's too soon to know what's gonna happen with this group. Are those individuals who get Medicaid and just as a reminder, Medicaid are those parts of our population that generally are lower income, often minorities and, what the affordable care act did is that it allowed states to have the option of Medicaid expansion.
And, and that was wonderful because with Medicaid expansion and I live in one of those Medicaid expansion states here in the state of Washington, we can ensure that our underserved population has access to insulin and other medical needs. For example, here in Washington State, Our patients with diabetes, if they qualify and they take insulin, also have access to continuous glucose monitoring.
And so that's great, but that's if you live in Washington State, because as it turns out, there are 12 states that do not have Medicaid expansion. And these states are mostly in the Southeast part of the U.S., including the state of Texas. In those states without Medicaid expansion, these people who, who are underserved and who don't have a lot of expendable income, they also can't afford their insulin.
When a vial of insulin can be two or $300 a vial. Now to be fair, the insulin companies are now trying to help this population. And that's a good thing, but nevertheless, they have to struggle and they have to know how to navigate the system, and everything that happened in the Senate over the weekend, on here on August 8th,
I don't know how that's going to affect the Medicaid group. In fact, I have a call later this afternoon to talk to some of the lawmakers to see if they know, because this is all happening so fast and furiously it's, it's a moving target, but this is what I do know. What I do know is when insulin was discovered, it was thought to be, this is something that was thought to be a right and not a privilege.
And when you go to most countries of the world today in 2022, that's exactly what it is. It may not be the best insulin. It may not be the newest insulin, but insulin is available for almost everybody in the world, but that's not true if you live in the United States. We have the same amount of insulin rationing here in this country as the low and mid income countries do around the world.
That shouldn't be either. Now, I think, it shouldn't be where you live in the United States is also going to dictate if you have access to insulin. But that's also true because the decision was, was that every state would have the opportunity to decide if they were gonna have Medicaid expansion. And if it didn't have Medicaid expansion, you may not have access to insulin in addition to other other drugs and so, I'm sort of rambling here and I apologize to this, but it is really a fascinating and heartbreaking topic. When I see patient after patient, where they can't afford their meds and they can't afford their insulin. And, and, and the other final point in this bit of a ramble that I'm doing, and I apologize for that, is that I talked to a patient this morning. I'm I, I saw patients today. It's October- it's August 8th and it's a Monday. And I, I saw a patient this morning who had just spent some time in Southern California and what she and her family did was they went across the border and they got all of this insulin in Mexico. In Mexico. Because the other interesting part is that, as difficult as it is for some people to pay for insulin. If you are going to use an analog insulin like Lantis or Novalog or Humalog, you need a prescription. Whereas in most countries of the world, you don't need a prescription. So besides the cost, we have this prescription deal, which makes it even more difficult for people to have access.
One of the things that I've learned is that not everybody can navigate the system. And part of that has to do I think with their socioeconomic background and, and, and we shouldn't make it this hard, but that's what we've done. And, and I I'm, I'm just afraid that with what happened over the weekend, and I hope I'm wrong about this because it just happened yesterday.
but I'm, I'm afraid we're gonna be making it worse instead of better.
Shireen: I, I do wanna, I do wanna dive into that a little bit more. Dr. Hirsch, so help us understand what exactly was in the bill this weekend. Why is it a big deal to anyone out there listening, who depends on insulin? So can you help us understand first? What was on the bill? What happened to it at the nth hour?
And how does it impact a listener? Who's again, dependent on insulin.
Hirsch: So my understanding is that if you are a Medicare patient. What is going to happen is you are gonna have very easy access to insulin. I don't know what it's gonna look like at the end. I don't even know when this is going to happen. But when it does happen, what the plan was was for a $35 cap per month for insulin.
And I think we will see something like that, or even better for our seniors. And, and I should point out. The over 65 year old age group on insulin continues to grow in the United States and where it is, especially growing is in people with type one diabetes who need insulin for survival. A patient with type two diabetes who doesn't take insulin, they aren't going to, they aren't gonna die.
They're just gonna have high blood sugars, but somebody with type one, they need it for survival. So the good part is our seniors are gonna have access to insulin at a reasonable cost. The problem is the non-Medicare patients. The under 65 year olds. It's gonna be business as usual, meaning how much you pay for your insulin will be based on your insurance.
But it again, gets back to the point. It also depends on what state you live in because certain states have already put in caps for insulin. Colorado for example was one of the first. We are doing that here in Washington State. So in our states I think what's gonna happen over time is that there will be cheaper insulin. I, I can tell you I work for a state institution, so we already have this cap on value. It's called value formulary for insulin. Not everybody who works in Washington State has that, but the hope is that will happen someday. That's that's my hope, especially since the feds, let us down. And I do mean that the feds let us down.
So now it has to come up to the states to help people with affordable insulin. No, no, no parents should have to worry about, do we put food on the table or do we get insulin for whether it's for, for dad or for, or for the child? But that's, that's what we've decided to do in this country. At least that was what was decided to do in the U.S. Senate yesterday.
And the reason why that was decided was they could not find 10 senators to vote, 10 Republican senators to vote for this. They only had seven. And so, so the the bill failed.
Shireen: And so if it had gone through that $35 cap that you're talking about, regardless of state, it doesn't matter what the state rules are, that $35 cap would've applied nationally across all these states.
But what happened is at the last hour, because enough votes didn't come in from the Republican side, they had to nix that piece off the bill and get the rest of it passed or however they went about editing it. But the point being they could not get that $35 cap for insulin pass yesterday.
Hirsch: That's exactly what happened.
And in fact, this morning I saw nine patients. Eight of the nine asked pretty much the same question. What, why would they do that to us? Why would they make this so difficult for us? And, and, and it's a fair question. And I I'd like to know that answer too. It would be interesting to talk to them. Why did you do this?
Shireen: Dr. Hirsch, I, I wanna talk about what does that mean? So what does it mean from someone from low income communities that does not have a, a state that is in a state that does not have expanded Medicaid, Medicaid access in their state? What does it mean to not have access to that insulin?
Hirsch: It means there has to be workarounds.
Now here's the good news. There are workarounds. You can find it online. What these workarounds are. But it gets back to the same thing. You have to know how to find the workarounds. You have to know how to access the system. You have to be sophisticated with the system. And just a lot of people in those communities are not.
And that, that, that is part of the problem. So here's the good news. The good news is one can pick up very inexpensive human insulin. I remember when human insulin was introduced. In the United States in 1982. Not as it is probably not what you would want to do with all the wonderful developments that have happened with insulin, but we got by just fine before before we had the fancy insulin analogs, which started in1996. We did fine with that. You can get this insulin very cheap. Walmart, for example, you, they make it in their own brand called rely-on. It comes from Novo Nordis at least it did $25 for a vial of insulin. You can get it very inexpensive at Walmart. And we do that. We do that with a lot of our patients.
The companies now, all three of them have wonderful programs for people who cannot afford their insulin. The problem is you have to know how to access these programs online. But the programs are there and I can tell you they are not advertised. The pharmacies at least That I know of here where I live, the pharmacies don't talk about these programs. At least I haven't seen it, but these programs are out there and they're actually very, very good. All three of them have it, not as cheap as the human insulin, but much more expensive than getting it retail. That's number two, number three. And I can tell you here, where I live, about two hours from the Canadian border.
Both from Canada and Mexico, you don't need a prescription to get insulin and you can get the insulin analogs much cheaper than you can here in the U.S., A fraction of the cost. So that's number three. There is one other situation that does not get publicity. And I don't know if you've ever heard of this before.
Have you ever heard of the federally funded 340 B program? So 340 B is something that is not very well appreciated and they are especially true in inner city hospitals, where there are a lot of underserved people where the hospital is able to apply to the federal government to get this designation, where they can sell insulin for pennies, very, very cheap to, for a patient or for that matter for a physician who is wondering, it's not talked about much, but the insulin is very cheap. And as a 340 B hospital, or as, as a patient, if you want to get your insulin from a 340 B hospital, the physician has to be part of that hospital.
So we are part of a 340 B system. So we sell insulin very cheap. I don't know what it is right now, but I remember when this was very popular, five, six years ago. We would have patients come to the University of Washington to see a doctor just once, so they could get the insulin very cheaply from, from us. But it's, it's something that needs to get much more attention than it, than it has.
Shireen: 340 B we'll,
we'll make sure to put a link on that in our show notes.
Hirsch: That'd be great.
Shireen: Dr. Hirsch, can you help us understand what are the consequences? And we hear this all the time of people rationing their insulin. Can you help us understand what, what the consequences of doing that?
Hirsch: Well for everybody who rations insulin, their blood sugars are gonna be higher.
And from a long term point of view, you know, we've known now for decades, that increases your risk of kidney disease, lower extremity, amputation, blindness. It's, it's very scary. The bigger issue, however, is acutely for somebody with type one diabetes who doesn't make insulin. They're not gonna last very long.
Without ending up very sick. Before the discovery of insulin, this is how people died with keto acidosis. That's the name of the condition, diabetic keto acidosis, or DKA. And we know to this day, the most common reason, especially in inner city, hospitals for DKA is lack of access to insulin. I, I, I, I also should point out I was volunteering.
I'm not gonna tell you what state it was. It was not where I am now. I was volunteering in a medical student diabetes clinic, specifically for the underserved community in this city, in this state. And this was probably about five years ago. And a young woman came in 28 years old. She did she, the reason why she came in was for free insulin samples.
She had no insulin at all. And the question is would in this state, would Medicaid pay for the insulin? Well, they had a rule, that the only way Medicaid would then cover your insulin was if you ended up in the hospital with keto acidosis or, or in the hospital for another reason, then the state would pay for your insulin.
Otherwise you were on your own. And so what I learned in this clinic where I was volunteering is that, night after night during this clinic, they had to make a decision. Were they gonna send this patient to the hospital, admit this patient to the hospital so she could then get her insulin for the next year.
For one year or would they give her samples so she would just come back in a month or two to get more insulin, but she would be dependent on driving five hours to get this free insulin, or should they put her in the hospital? I mean, this is how you have to play the system. It makes no sense.
Shireen: Well, Dr. Hirsch, can you show us the light at the end of the tunnel? We're wrapping up toward the end of the episode here. Can you show. What is the light at the end of the tunnel here? What would you see sort of coming after this, after what you heard happened yesterday?
Hirsch: This is what I'm hoping. I mean, there are other political issues and insulin is right up there.
And you know, one of the good things is in my view, what happened yesterday was, was, was so unexpected and so bad. It's this story is on the front page of every paper this morning. Every paper in the country. That we are denying insulin to people that this is what, this is what happened in the Senate yesterday.
And I'm hoping that this becomes a major political issue and, you know, as opposed to, I'm just gonna pick this, as opposed to abortion as an example, there isn't a religious or an ethical reason. Now you may agree or disagree with the ethics and morality of, of abortion. But to me, the ethics and morality of having access to insulin, that's not in the same bucket.
That's not in the same bucket. You can't compare the two. Because again, it gets down, is insulin a right? Or is it a privilege? In my opinion, and for the Canadian scientists who discovered insulin, it is a right. It's not a privilege, but those senators yesterday did not get that memo. They did not get that memo.
And so it is my hope that this gets enough political wins at its back that eventually this comes back to these same senators or maybe different senators because of the political backlash, since this is now a political issue. And this can be fixed.
Shireen: Dr. Hirsch with that, thank you so very much for your time.
We try to squeeze as much as we can in these, in these short few moments.
Hirsch: It's a lot.
Shireen: It is a lot. Indeed. Thank you so very much for your time. We really appreciate it.
Hirsch: You are very welcome.
Shireen: Thank you for listening to the Yumlish Podcast. Make sure to follow us on social media @Yumlish_ on Instagram and Twitter and @Yumlish on Facebook and LinkedIn. For tips about managing your diabetes and other chronic conditions and to chat and connect with us about your journey and perspectives. You can also visit our website Yumlish.com for more recipes advice and to get involved with all of the exciting opportunities Yumlish has to offer. If you like this week's show, make sure to subscribe so you can hear more from us every time we post. Thank you again, and we'll see you next time. Remember your health always comes first. Stay well.