“Better” Politics Doesn’t Make Insulin Affordable

“There’s just no pleasing you, is there, Hilary?! You complain the Dems aren’t doing enough to solve the insulin crisis. Then they cap the price of insulin at $35 and you’re STILL unhappy?!”

“But it isn’t a price cap. It’s a copay cap. It doesn’t benefit those hit hardest by the insulin crisis — the uninsured. And the price of a vial of insulin will stay over $300+. It won’t stop drug makers from raising the price even higher.”

“Ok, but Hilary, surely, you understand how government works? We can’t do everything at once. Doing something is better than doing nothing. And a copay cap will help so many people!”

“Actually, according to an analysis by the Kaiser Family Foundation, it will only help about 1 in 5 people with diabetes.”

“Really?”

“Yes, really. And because the actual price of insulin will remain high, if not increase, 1 in 4 Americans will likely continue to be forced to ration their insulin. So, a copay cap may help a few but it doesn’t come close to fixing the insulin crisis. And in fact, could contribute to more needless deaths.”

“That’s terrible!”

“Yes. Yes, it is.”

An imaginary conversation. How I wish it were that easy to explain my frustration around the insulin crisis and American lawmakers.

Who am I?

I am the mother of a child with type 1 diabetes — an autoimmune disease that attacks the pancreas. He will be insulin-dependent for the rest of his life. And I had a very tough night with him last night. One that only someone with diabetes or a caregiver of someone with diabetes could understand. Today, writing is my refuge. Read. Don’t read. This is as much for me as it is for you. I take comfort in the knowledge that I’m not limited to a word count here as I am in my Sunday columns.

My youngest was diagnosed when he was 2 ½ years old. Despite having no formal medical training, I learned how to give injections, test his blood sugar, count carbohydrates, and give emergency glucagon should he have a severe low blood sugar. I learned that if I gave him too much insulin, I could kill him. I also learned that if he didn’t get any insulin, he’d die. Insulin is like air to someone who is insulin-dependent; without it, their blood begins to turn acidic, and they will die a very painful death within days. For the first ten years of his life, I never slept through the night. Not once.

When he was first diagnosed, I did what every parent does, they just try to keep their kid alive. I looked for support where I could find it, reaching out to the obvious diabetes organizations, raised money for a cure, doing walks. I ran a marathon and even donated two cars.

Tired of waiting for technology to make my son’s life easier, I joined the #WeAreNotWaiting community. I built him a #Nightscout webpage and then a Do-It-Yourself Artificial Pancreas System. We used two different systems for four years to manage his diabetes that surpassed anything available on the market. We had the full support of his endocrinology team. I presented our success to a group of endocrinologists at Boston Children’s Hospital, where my son had three neurosurgeries — all greatly assisted by our DIY system.

When I realized that people were dying because they couldn’t afford insulin, I started advocating for legislation at the state level. I came close to joining the board of the JDRF Greater New England Chapter but withdrew my candidacy after I had inquired why JDRF hadn’t testified in support of an important insulin bill at the state legislature. They responded they didn’t have the “bandwidth or infrastructure to do state level issues,” yet, when I looked at their federal agenda, nothing demonstrated any desire to tackle the insulin crisis. (It still doesn’t.)

I’ve helped pass several bills focused on insulin in Maine, including an emergency insulin access bill and a copay cap bill. I also worked briefly as a policy manager for the US division of an international non-profit aimed solely at making insulin and diabetes supplies affordable and accessible. I’ve worked on federal bills.

So, who am I? I am a caregiver. I am an advocate. I know what I’m talking about. I am a mother who will stop at no length to keep her son alive.

And yet, I easily admit my shortcomings. I reach out to friends and contacts, asking for clarification if I’m unsure about something. Nevertheless, I’m baffled at how many “experts” there are when it comes to passing legislation for insulin.

Now, let’s discuss how you fit in…

While writing this today, the copay cap for private insurance in the reconciliation package failed by three votes. Three votes. I fully expect every Democrat ready to blast social media with posts about how “Republicans voted against lowering the price of insulin.” Except, as I wrote in April, and as I’ll remind you here, this is a copay cap, not a price cap.

Technically, no one voted for or against “lowering the price” of insulin. It’s Democrats using carefully crafted language to help dig the divide between the parties and score points. Republicans play the same game. This is old news. But when lives are at stake, it’s a disgrace.

Still, when I hear or see ordinary people repeating Democratic talking points, it’s maddening. Democrats and Republicans know exactly what they’re doing. They’re influenced by lobby dollars. They’re making deals behind closed doors. You, on the other hand, are being played. Instead of listening to those most impacted by the insulin crisis, those most hurt, those dying, in many cases, people you know, you choose to assume we’re uninformed. Perhaps even uneducated? Your perspective is not only patronizing, but it’s contributing to us losing critical allies we need to help pass the legislation we so desperately need to save lives. Furthermore, because Democrats have used misleading language and you’ve echoed it, when we try to pass significant legislation, no one will have the appetite to do it. They’ll say insulin legislation has already been done.

Don’t get me wrong. I don’t doubt that you sincerely care. But I do doubt your understanding of the issue. I grapple with how to help you understand. And the best that I can come up with is an analogy. If you are not a woman, don’t come to women with the answers as to how to solve sexism without listening to them. If you are not a person of color, do not speak of how to solve issues of racism without allowing someone of color to lead the charge. If you are not disabled, how could you possibly know what accommodations a disabled person might need in school or a work setting without speaking with them? If you’re following me so far, if you agree, then allow me this question:

If you are not insulin-dependent or care for someone who is insulin-dependent, how could you possibly assume they don’t know exactly what they need? Have you ever had to fight to get your insulin or supplies covered by insurance? (I’m not talking about supplies to help you be healthier. I’m talking about medical supplies without which you will die.) Have you ever had to ration insulin? If you haven’t, how could you understand?

This isn’t to say you can’t have sympathy and empathy for those who live with diabetes. It just means, you must first understand your point of privilege. Know what you know and what you don’t know. Why not start with the assumption that you believe the people in the diabetes community are the experts? Is it not enough that they must work 24/7 to stay alive? Is it not enough that they must spend thousands of dollars a year just to breathe air? (Though you get to do it for free.) That in their free time they must become advocates and political pawns? And you think they should be thankful, not for the bread crust lawmakers give them, but for crumbs?! Because a copay cap helping 1 in 5 Americans is a crumb.

Now take a minute and look up Alec Smith. A young man from Minnesota, with a salary of $40,000. Who died less than 30 days after aging out of his parent’s health insurance. Or read about Shayne Patrick Doyle, who died just $50 short of his GoFundMe campaign for money to buy insulin. Or Mainer, Nick Bolduc, who died because the price of insulin was always a struggle for him. (And yes, you’ll read about my son in that article as well.) These three, beautiful, souls are just a few of many who have died because our government has allowed the pharmaceutical industry to hold patients hostage.

And when I say our government has allowed this, I don’t say this lightly. The U.S. House of Representatives Committee on Oversight and Reform’s investigation of the pharmaceutical industry concluded its practices were unlawful. Moreover, our government did nothing and has continued to do nothing to stop it. Chairwoman, Carolyn B. Maloney Chairwoman wrote in her introduction,

“These companies have specifically targeted the U.S. market for higher prices, even while cutting prices in other countries because weaknesses in our health care system have allowed them to get away with outrageous prices and anticompetitive conduct.”

Read the investigation and learn how all the companies investigated had executive bonuses tied to revenue targets. Many had compensation structures that incentivized and rewarded executives when drug-specific revenue targets were met. Indeed, some manufacturers wouldn’t have met their targets without raising their prices.

Now tell me why advocates should be thankful for incrementalism. Explain to me why it’s ok for the insulin that is made in the United States to be sold in Canada for roughly $30 but over $300 here. Explain how even though lawmakers could use their power to make insulin affordable, I should just accept their inaction. Tell me how because we went through a boatload of extra insulin last night, if it had been our last vial, it would be ok for us to pay that out-of-pocket price (because insurance won’t allow extra). Or maybe you want to explain to my son how he can NEVER, EVER be without insurance. But that even then, it’s not a guarantee he’ll be able to afford his insulin.

Because maybe you believe people really do have the luxury of making choices between paying bills and rent or buying insulin.

They don’t. There is no choice to be made.

The choice is to buy insulin or die.

Without the price of insulin being capped. (The actual price. Not a copay cap.) The problem will always remain. The ever-present threat of death.

I’m not overreacting. I’m not overdramatizing. It is that serious.

So now you know copay caps aren’t enough. What are you going to do about it? I’d love for you to be an ally. But being an ally means listening to patient-advocates first. Really listening to them.

Then join us in the fight for a federal price cap — because that is truly what we need. (And PLEASE don’t just write blank checks to so-called diabetes advocacy nonprofits. Many are doing nothing and accept money from Pharma, such as JDRF, ADA, and Beyond Type 1.) But if you can’t do that, I understand. Then at least do me the favor and stop telling us to use Walmart insulin. Stop telling us about your uncle with diabetes. And stop regurgitating Democratic wordsmithing that makes it sound like they’ve done something miraculous. They’ve used patients and left them out to dry.

Yes, I hear you. Democrats are “better” than Republicans. However, at this point, despite being a registered Democrat, I’m becoming politically agnostic. Just as a copay cap won’t lower the price of insulin, “better” doesn’t make insulin affordable.