Last year I woke up one morning and thought my youngest son had died.
I had slept through his low blood glucose alerts during the night. When I woke up, I realized there hadn’t been any glucose readings for hours. My gut told me my son was dead. I raced to his room, terrified to enter. I took a deep breath, turned the handle, and walked in. I couldn’t see or hear him breathing. I reached out and touched his leg. It was warm.
Alive.
I quietly exhaled. I quickly resolved the technology problem preventing me from monitoring his blood glucose remotely. Then I crawled back into my bed shaking and cried until my usual alarm went off.
My son has had Type 1 diabetes for almost 15 years, and this was the first time I ever thought he may have been a victim of “dead-in-bed syndrome” — a term used to describe the phenomenon in which people with diabetes die suddenly in their sleep. It’s part of the reason I never slept through the night for the first 10 years of his life. It’s also part of what terrifies me when I think of him heading off to college next year. It’s one of the scary but essential conversations we need to have from my, “How to keep him alive” mental checklist.
And since November is Diabetes Awareness Month, and my son just submitted a college application, this has been on my mind. As I’ve shifted more responsibility onto his shoulders, I’ve witnessed him experiencing how broken our health care system is. Like when he got a denial for a prescription that he’s had since he was 3. Our insurance requires prior authorization. We’re unclear how they’ve helped us pay for hundreds of thousands of dollars of insulin but now require a note from his doctor that says he has diabetes.
So, the gravest conversation we’ve had about diabetes is about the staggering cost of insulin — something he cannot live without. And though we’re talking about him going to college, we’re already thinking about when he ages out of our insurance. Because one vial of his insulin costs on average $5 to manufacture, but it’s over $300 out-of-pocket. Out-of-pocket, his insulin would cost over $13,000 annually.
Last spring, when insulin manufacturers “voluntarily” lowered their insulin price, I deemed it a PR stunt. Without action from the federal government, I asked, what would prevent them from raising the prices in the future? A recent survey by Sens. Elizabeth Warren and Richard Blumenthal now exposes Pharma’s broken promises. Eli Lily said they’d lower the price of its generic insulin Lispro, and people struggled to find this supposedly reduced-priced insulin in pharmacies.
Novo Nordisk claimed it would also lower the price of its long-acting insulin, Levemir. Last week, as if to help kick off Diabetes Awareness Month with a middle finger to the diabetes community, Novo Nordisk announced that “due to global manufacturing constraints,” it would stop manufacturing Levemir by the end of 2024.
Interestingly, the manufacturing issues spared profitable insulin products, Tresiba and Wegovy, which helped Novo Nordisk post record operating profits in the third quarter. Tresiba costs over $600 a vial. The announcement from Novo Nordisk is telling. It’s “confident that patients will be able to access alternative treatments in the U.S.” It’s clear which “treatments” it intends.
Though Medicare promises an insulin cap of $35 for seniors, accessibility challenges persist. Without oversight, some seniors are still paying more. For those not on Medicare, there isn’t a copay cap. But that’s really beside the point. Novo Nordisk’s actions underscore the unchecked exploitation by Pharma.
Their conduct is nothing short of criminal. Manipulating patents to thwart generic competition, they raised insulin prices to levels forcing people into rationing, resulting in tragic deaths, even in Maine.
Eight months ago, headlines heralded insulin price reductions. Now that a manufacturer is walking back its offer, no one is talking about it.
The silence from President Biden and Sen. Susan Collins, Maine’s Diabetes Caucus co-chair, is deafening.
So, how do you tell your son who has his whole life to look forward to, that maybe he doesn’t have his whole life to look forward to? How do you tell him anything that even closely resembling progress in the insulin crisis has been about political posturing? How do you explain that government and healthcare seemingly work against him and not for him? How do you tell him if he is ever without insurance, he must pay whatever the price or he will die?
You sit him down. Kiss his beautiful head. And you let him read one more insulin column you swore you wouldn’t write. You tell him you love him and send him to bed. And you promise yourself that you’ll continue to fight for a true price cap and public production before he turns 26.
Comments are not available on this story.
Send questions/comments to the editors.
