This week’s interview is with Drew, a Florida man in his 30s who has Type 1 diabetes. Drew has private insurance, but still faces routine problems accessing and paying for his medical care and the insulin he needs to survive. (If you’re diabetic and uninsured, please reach out at firstname.lastname@example.org. I’d love to talk to you.)
The cost of insulin has broken through into the political conversation in a way that other drugs haven’t, in large part due to the efforts of activists. In April 2020, Minnesota’s legislature passed the Alec Smith Emergency Insulin Act, establishing a program to provide emergency insulin for a $35 co-pay, which the pharmaceutical industry promptly sued to block. As Natalie Shure wrote last year, “Nothing illustrates the failures of the American health care system quite like the insulin cost crisis.” She continued:
Just a few missed doses are capable of sparking tragedy, in a way that isn’t true for other drugs, and yet patients forgo medications every day for cost reasons, at rates roughly equivalent to insulin rationing. We know that patients across the spectrum avoid care due to soaring deductibles and that they are overloaded with medical debt. We know that the stress associated with rationing compounds over the course of a life, and that rich lives outlast poor ones by over a decade. These are, more or less, the same dynamics that play out across the health care system—the staggeringly high costs of good health in America play out all around us; it’s just that insulin makes the stakes glaringly, tragically obvious.
Insulin isn’t the only drug that people struggle to afford, nor is it the only medicine that can harm a person’s health after a missed dose or two; just ask anyone who’s been on SSRIs how they feel after missing a couple doses. But, as Natalie said, it’s particularly dangerous and striking with insulin. As Drew told me, if he doesn’t have insulin, he can’t eat.
A few things to pull out of our interview: Drew has to see a specialist every few months to renew his prescription for his insulin, “as if [he’s] not going to be diabetic somehow,” but he also has to go through this rigamarole every time he gets a new insurance provider. Last time he changed plans, the new insurance wouldn’t cover his existing insulin prescription, causing both an administrative headache and an ongoing reduction in his daily health and comfort level.
This is one of many reasons why tying insurance to employment, or to anything other than just being a human being, is such a terrible idea. Why should changing jobs, or your partner changing jobs, or moving to a new city, cause such an upheaval in your medical treatment? Your body doesn’t care that your insurance changed; it’s still going to need insulin, or inhalers, or antidepressants. Why should you have to switch to a worse medication just because you moved across the state? In a Michigan study, 28 percent of people with employer-sponsored insurance in 2014 were not on the same plan a year later. These are the realities we live with, and it’s what politicians seek to preserve when they fight to keep employer-sponsored insurance as the primary way of providing health coverage in this country.
We talked about other administrative headaches, too—having to see a primary care provider before he can see a specialist, which adds a co-pay and a time delay; spending hours on the phone with insurance, doctors, and pharmacies; wait times to see new specialists. (Our interview was at the end of December, but I followed up with Drew last week; he still hadn’t seen the new specialist.) These problems have taken Drew right up to the edge of running out of his drugs in the past, with just a day or two of insulin left.
There’s also the issue of cost. Drew said his meds would cost around $1000 a month without insurance, and that he just couldn’t go for very long being uninsured because of this cost. And he simply ignores the bills he gets for blood tests; he estimates he has at least a thousand dollars in debt with laboratories. When his insurance switched to requiring him to pay upfront, he simply stopped using his glucose monitor.
I’m not using Drew’s last name in order to protect his identity, because of the sensitive nature of what we discussed. As always, our conversation has been lightly edited and condensed.
Drew: I was diagnosed the week I turned 17, and just for anybody who may not be aware, Type 1 Diabetes is autoimmune, it’s not a hereditary thing, so there’s nothing I could do to prevent my chances of getting it. It just happens. It has nothing to do with the kind of shape I’m in, I’m in pretty decent shape, there’s nothing I could do—not only can I not prevent it, there’s also nothing I could do to make the insulin independently. I’m going to have to need insulin for the rest of my life, no matter what.
I was on my parents’ insurance for a while, I think I actually stayed on until I was 24 or 25. Then I got my own insurance, and there’s just so many hoops you have to jump through depending on your provider. Even though I’m always going to be diabetic, I’m always going to need to be on insulin, I still have to go and get that prescription updated every three to six months. Depending on the insurance, there’s a co-pay for specialists. I just recently switched insurances, I was on my wife’s insurance and I got on my own, through Florida State, and whenever I did that, their insurance wants me to first see a primary care provider, do bloodwork with that person, so that primary care provider can refer me to a specialist, as if I’m not going to be diabetic somehow.
So I’m still waiting on that. I did that in September, and I had to call my old endocrinologist to get updates on my scripts, who’s like six hours away, because I’ve run out of my prescription and I still haven’t been referred to my new specialist. So I’m in limbo right now waiting to meet with a specialist, hopefully in January, so I can pay that person to prescribe me insulin that I also pay for. It’s just… You get nickel and dimed for being a type 1 diabetic.
Sick Note: You’re still able to get your insulin for now?
Drew: I got them to update my prescription, they said it would be the last time, I apologized profusely like—I know I shouldn’t be doing this but I don’t have another option right now. Because my primary care [provider] doesn’t want to prescribe it, my prescription ran out, and I don’t have another person to write me a prescription at the moment.
Sick Note: How much does it cost with insurance? And what kind of insulin are you on?
Drew: This is another thing—every time you switch insurances there’s a whole shit show about what they want to cover and don’t cover. They won’t cover certain brands, certain types of insulin. Humalog is my short-acting insulin, that’s what I take every time I eat, that covers the carbs that I eat. And then Toujeo is the long-acting insulin, which is absolute garbage.
I was on an insulin called Tresiba, which is not the same, it’s not like Coke and Pepsi. We have Novalog and Humalog, which are essentially the same thing, but you have Toujeo and Tresiba, which are not at all the same thing, they don’t work in the same way. Tresiba was awesome, it helped me out with my blood sugars, and this Toujeo is just… It’s such shit, I wake up in the middle of the night with my blood sugar either really high or really low. It’s not consistent for me. But my new insurance didn’t want to cover either of them. I was actually on Novalog and Tresiba, and my new insurance wants me to switch to Humalog and Toujeo.
That created a whole other shit show too, because my old prescriber had me on those medicines, so she wrote me the prescription for those ones. But my new insurance didn’t want to cover those, so I had to call back again and say, “these are the ones they’re willing to cover, so can you write me a prescription for those?” It took me weeks to get through the whole thing. There were several times where I was down to the last couple of units, where I wouldn’t have been able to eat anymore. I got it just in the nick of time. And then because I started three weeks before I knew I was going to run out.
Sick Note: That’s really scary. It must be emotionally draining.
Drew: It is, because literally if I don’t have insulin, I just can’t eat.
Sick Note: That’s awful. So in terms of the specialist visits, it doesn’t sound like you’ve had long periods where you’ve been uninsured?
Drew: No, I can’t, I couldn’t afford—I mean, the insulin itself is like, oh God, over a thousand dollars a month for my prescriptions. That’s just the insulin, that’s without the doctor’s visits that I would have to pay. Even with [insurance] I still pay a $50 co-pay.
Sick Note: Has that affected other life, career, etc choices knowing that you have to be insured?
Drew: Thankfully it hasn’t come to that, but it easily could. Thankfully I’ve been pursuing things that come with health insurance as a benefit and things like that, but if I wanted to do a lot of different things… I can’t imagine being a gig economy worker, you couldn’t do that as a Type 1 diabetic.
Sick Note: I wanted to ask a bit about the specialist visits, how much do they normally cost?
Drew: So it’s typically on most insurances it’s like a $50 co-pay, but that’s not including the bloodwork that I have to do, which I never pay for—I get those bills from Quest Diagnostics or whoever, and I just don’t… There’s so much about being a diabetic, I have so much medical debt right now and I just don’t pay it. I don’t have an option. Luckily I guess because of HIPAA stuff it doesn’t affect my credit, because I’ve got still really good credit, but I’ve got 10 years of medical debt compiled so far, and I just quit paying for a lot of stuff. [Sick Note: It’s a little more complicated than this; if your medical debt is referred to debt collectors, it can affect your credit score, but HIPAA can help you challenge debt collections.]
Sick Note: Do you have any kind of estimate about how much that might be?
Drew: I have no idea, because so many of the companies have quit bothering me because I didn’t pay.
I know with just CareCentrix alone, I have at least one to two thousand dollars. That’s whenever I used to have a continuous glucose monitor. I used to have those, and that was another thing that sucked that my insurance switched up on me. Whenever I was on my wife’s old insurance which was Cigna, they would bill through a third party company, so again that was one of those things where I would meet my deductible in January, but I never paid it. They would send me the supplies, I would get them straight from Dexcom, the company that made the device, but I would have to pay through CareCentrix, and I just never paid CareCentrix, and Dexcom didn’t give a shit about it because they didn’t really know whether I was paying or not. They were getting paid by Carecentrix, I guess, I’m not really sure how it works. But they would keep sending it to me and I would keep not paying. Then they changed that, the last year that I was on Cigna, so that I would have to pay upfront, so I had to go off it unfortunately. It makes my blood sugar run a lot higher because I have to test manually, I can’t see trends in whether it’s rising or falling.
Sick Note: If you wanted to pay out of pocket, how much would that cost?
Drew: The last time I even had one was the end of 2019, I was still on Cigna at this point. I would have just had to pay my deductible outright, plus 20% of the device. My deductible was $1000, their 20% was something around $300, and this is for a 3 month supply. So yearly I would have had to pay… $2200. For just that.
Sick Note: Have you ever had issues where you’ve had the same insurance plan and at the end of the year they’ve changed what they’ll cover?
Drew: They did that when I was at Cigna, they did that with Tresiba too, and I had to go through the whole like—I was already on the medicine, and I had to get prior authorization for it too. That’s what I tried to do recently with United, which I’m on now, I had my doctor submit all the paperwork for it. This doctor had to have tried me on two other different kinds of insulin first, for six months at a time—I hadn’t been seeing that doctor for six months at that time. They were both insulins that I had tried, but not with that doctor. Insulins I tried and didn’t work for me.
Sick Note: Do you have an estimate for the amount of time it takes you each week, month, etc. to go through all these steps with getting a specialist to prescribe you, getting a specialist appointment at all?
Drew: Oh, God… Yeah, that’s almost as bad as having to pay for everything, is that I spend like… In October, this whole debacle with my prescription ran out, they didn’t want to cover the one that my doctor rewrote for me which she shouldn’t have, so I had to call back and get that stuff done—that couple weeks that I was dealing with that, I bet I spent like, oh… five to six hours on the phone. And of course you have to go through all of the machines to get the right stuff, you gotta game it so you can actually talking to someone, then they’re like, you’re not talking to the right person… It’s just so frustrating. I have the patience of Job, but when it comes to waiting on the phone and doing that shit, I have no patience.
And then I’ll try to call CVS and they’ll say, oh, your doctor sent it to this pharmacy actually, and then I go there and it’s not ready… Also, I don’t know if you ever use CVS, but the CVS wait voice is the worst wait voice I’ve ever heard. It sounds so calm and reassuring and you’re so pissed off.
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