The three major insulin makers announced in March that they would implement monthly price caps and/or lower the list price of insulin. The moves came after years of activism from diabetics and the passage of two federal laws that pressured the companies to act.
What’s it like to get temporary kidney damage because you can’t afford your insulin? What’s it like to ration the drug that helps you stay alive?
Charlotte resident Danielle Hutchison knows all too well. Hutchison is a type one diabetic who was diagnosed at age 12. For nearly two decades, she has relied on insulin to survive and has endured a lot of stress and sickness over the years trying to maintain access to a steady supply of the expensive medication.
For years, the three major insulin makers steadily raised the prices of the life-saving medication—so much so that over a 20-year period, the cost of insulin increased by an astonishing 600%. These price hikes came as the cost of producing insulin remained stable, between $3.69 and $6.16 a vial, according to one 2018 study.
But thanks to enormous pressure from advocates like Hutchison and the actions of Democratic lawmakers, the tide has finally begun to turn.
Between March 1 and March 16, the three major insulin makers that make up roughly 90% of the market—Eli Lilly, Sanofi, and Novo Nordisk—announced that they would implement a $35 monthly cap for those with private insurance and/or lower the list prices of their products by between 70-78%, effective Jan. 1, 2024. Individuals without insurance will also have access to lower prices.
The announcements came after President Biden’s Inflation Reduction Act capped out-of-pocket insulin costs for seniors on Medicare at $35 per month. Biden’s American Rescue Plan also reformed the rules guiding the Medicaid health insurance program so that the companies would have faced a financial penalty had they not lowered their prices.
We recently interviewed Hutchison to hear her story and get her thoughts on the recent announcements.
This interview has been edited and condensed for brevity and clarity.
Cardinal & Pine: Have you ever had—or did your parents ever have—issues accessing insulin or facing really high costs?
Hutchison: If my parents did, they never told me. I did struggle a lot with my mental health going into high school and stuff, I felt like a burden on everybody around me because my friends had to wait longer for their lunch because they had to wait for me to go and test my blood sugar and get my insulin.
And I felt like I was a burden on my parents financially and for their time because they were always taking me to the doctor, so I think they hid [the cost] from me until they couldn’t anymore. Once I turned 18 and went to college and had to pick it up myself because I was three hours away, they couldn’t hide that from me anymore. That’s sort of when I realized how expensive it was because it was still like $150 to 200 with their insurance for my insulin every month.
What is your insurance situation currently? And how much does insulin cost you right now?
Right now I’m super lucky because I kind of just hit the jackpot of insurance that’s available to me, because my insurance premium is only $27 a month. I have a massive tax credit through the marketplace and the Affordable Care Act. My insulin is about $100 for three months, so it’s actually really good. It could be better because it could be free, but for a while I was paying 150 to $200 a month for my insulin.
During the brief time in the last quarter of 2020 or the first quarter of 2021, I was uninsured because I didn’t have enough money coming in and I couldn’t pay my premiums. At that time I was paying $500 a month for my premium and that was before all of my medication and stuff, so I just couldn’t pay it. I missed a month and then didn’t get my payment in time for the next month and I lost it, so I was using GoodRx for a couple months before I got into the LillyCares [patience assistance] program, which is an amazing program, but shouldn’t have to exist.
When I was on the GoodRx, the pharmacies close to me were only doing brand name and I remember one time going in and the guy scanned it in and his eyes just widened when he looked at the retail price before he could apply the GoodRx coupon because it was like $3,000. And he was like, ‘Oh my gosh, is this how much it normally costs?’ And I was like, ‘Yeah, unfortunately.’
Have you ever had to ration your insulin?
When I was without my insurance, I did ration and for part of 2020 I rationed because I was living with somebody and it wasn’t a good situation. It was very toxic, and so I was trying to ration so that way I didn’t have to go to the pharmacy as often to get my insulin.
What was that like?
It was stressful because you have to make sure with rationing that you do it correctly so you don’t run out. It’s also hard because you’re not giving yourself the insulin that you need, so your blood sugars are much higher all the time, and I was just feeling so sluggish and tired, which made me not necessarily want to work as much because I was not feeling well. And then if I didn’t work as much, because I’m on a contract basis, I didn’t get paid as often, which meant that I couldn’t afford more insulin, which meant that I had to ration more. So it was kind of a never ending cycle and it’s just not good for your health.
During the time I had to ration, I had a urine test come back with high protein, which was showing that my kidneys were starting to go bad, and so I had to get put on medication to try to reverse that damage and prevent it from getting any worse. Luckily we caught it in time, but that’s only because I was diligent about trying to see my doctors during that time and because I was already pushing off the payments, so I was just going to keep going just so I could at least stay out of a hospital.
It sounds like you were paying a lot more for both your premium and for insulin, prior to the new federal subsidies for the ACA?
Yeah, I don’t just have diabetes. I have several other conditions as well that require medication, the most recent being lupus, which was, I was diagnosed in 2020. I was doing the $500 or so dollars for premiums and then another $400 or $500 a month for my medications. And as a result of all of that, I was putting off my copays for my doctor’s appointments and a couple of times that I ended up in the hospital, so I am in a lot of medical debt right now.
Luckily I’m living in my parents’ house right now with them. They were like, ‘You’re going to stay here until you can get yourself on your feet. We’d rather you pay for your medical stuff and have your insulin rather than live somewhere and have to choose between rent and your life.’ And I know not everybody’s that lucky.
In March, the three big insulin manufacturers all announced they’re going to either implement co-pay caps or decrease the list price, or both. What was your reaction to those announcements?
It felt like a large relief because it’s a step in the right direction, as well as the Insulin for All Act that I was really excited to see, because that popped up just a couple days later after Lilly announced [its price cuts]. I’m excited for it, but at the same time, it’s kind of like a band-aid on a bullet wound. It helps, but it’s not going to address the systemic problem.
I’m all for all the baby steps, let’s take as many baby steps as we can because they’re better than nothing. But Frederick Banting did sell the patent for only a dollar and when he did it, he said, ‘Insulin does not belong to me, it belongs to the world.’ He sold it specifically that way so that it wouldn’t line the pockets of the wealthy for people to get their insulin, and I’m sure he’s rolling over in his grave right now.
Until we can put the regulations in place that make it so the pharmacies and the manufacturers and all the insurance companies, until they all quit trying to line each other’s pockets by giving each other buybacks, rebates, whatever, or owning part of each other and not really taking care of the patients and stuff, it’s going to still be a problem. Hopefully these laws and companies being pressured to lower everything can hold us over until that time.
I know you’re in a good place with your insurance and the cost of your insulin, but do you think those price changes will help other people who maybe don’t have as good insurance as you do?
I know several people that it will help a lot, especially those who are either uninsured or their insurance is just not very great because they have to take it through their employer or through the military or whatever. I’ve known a couple people who lived close to the borders and would either hop over into Canada or down into Mexico to buy their insulin because it would be so much cheaper, and so maybe this will help ease that so they don’t feel like they have to continually go every few months to go and buy it from a different country.
What else do you want to see lawmakers do on insulin?
I would really like it for insulin to be free and, if not free, less than $10 for a vial. Personally, I think it should be $10 a month total because nobody just uses one vial per month. Personally, I use about five per month because I have insulin resistance. In a perfect world it would be free because it was meant to be free and nobody should have to choose between living and paying their bills.
Is there anything else I haven’t asked you about that you want to share or you just think is important to know?
In terms of the Insulin for All Act, I would encourage folks to pay attention to it. It is a two-page bill, both in the Senate and in the House. There’s nothing fancy or extra snuck in, like they like to do in some bills. Reach out to your representatives and encourage them to vote yes for it. There’s no reason why they shouldn’t vote for this. It is not complicated, it’s straightforward. And so in my opinion, any politician who doesn’t vote for it must either hate diabetics or have somebody paying them to vote against it, and either way, I would not want them representing me in Congress. That’s something that people should think about, especially since next year is an election year.
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