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Opinion: Insulin rationing killed my son. Here’s what needs to be done

The last insulin he used came from vials I had given him before he lost his insurance. They were leftovers from a diabetic friend of a friend who had died in Washington state.

This black market for insulin and other essential medications is a reality in America. One in four diabetics ration their insulin or “reported cost-related insulin underuse.” Right Care Alliance, a patients and providers coalition, has documented the deaths of at least 14 diabetic Americans who’ve died due to rationing since 2017, including my son. It’s unknown how many others have passed because of diabetic complications due to rationing.

Families of diabetics who pass away look at their remaining insulin supply and realize it is liquid gold. Simply put, it’s a product that means life or death for the millions of people who need it.

Quietly, under the table, advocates send insulin to diabetics. Members of online communities for diabetics ship out lifeline vials on their own dime.

What happened to my son, who felt like he had no choice but to ration his insulin, is happening all over America — because insulin is not affordable for most people who are uninsured. A month’s supply can cost over $1,000 out-of-pocket, something I only learned after Jesse was gone.

He believed in earning his own way, even while he battled a serious health condition, and didn’t ask for help. Though insulin rationing doesn’t always lead to death, high blood sugar levels can, when left unchecked, ravage a diabetic’s body, causing irreversible long-term complications.

Advocates with T1International, a nonprofit led by people with and impacted by type 1 diabetes, and its state chapters, #insulin4all, have been fighting for change. While I am thankful for legislation that will do so much for some, the Inflation Reduction Act (IRA) falls short for most diabetics. It will cap insulin co-payments for Medicare beneficiaries but will not lower the list price of insulin. Instead, the high costs will be shifted elsewhere.
And uninsured diabetics, like my late son, remain vulnerable. The IRA will have no impact on list prices paid by the uninsured.
When a $35 copay cap for private insurance holders came up for a reconciliation vote during debate over the bill, the Senate parliamentarian, who oversees procedures, ruled it was not eligible because it didn’t comply with budget rules.
A vote to overrule the parliamentarian failed, with most Republicans, including Sens. Chuck Grassley and Joni Ernst of Iowa, my home state, voting no. Soon after, a 2020 video of Ernst talking about the need to lower insulin costs — and mentioning my and Jesse’s story — went viral, with Democrats suggesting she was a hypocrite.

But my son was one of the uninsured. From the beginning, this legislation was never about saving people like him. Our story may be great fodder for campaigns and political division, but measures to lower drug list prices to help everyone are the real solution. Hopefully, the exclusion of caps for the insured will keep this issue in the forefront and prompt legislators to get to the root cause of high prices.

Jesse Lutgen was uninsured when he began rationing his insulin.
It’s time that Congress brings a standalone bill to lower prescription costs across the board, for everyone. We need to focus on what makes a $6 vial of insulin cost $300. Let’s end pay-for-delay deals where brand drug manufacturers offer patent settlements that pay generic companies not to bring lower-cost alternatives to market. Let’s call for transparency in pricing from Big Pharma and pharmacy benefit managers, the intermediaries between insurance and pharmaceutical companies. These are ideas that can help lower list prices, not only for insulin but for all medications.
Many bills have been filed in the past few years to focus solely on lowering prescription drug prices, but none have been successful.
In the meantime, insulin affordability advocates have been painstakingly working on state legislation to make insulin affordable and accessible. The Alec Smith Insulin Affordability Act — or Alec’s Law — in Minnesota provides a safety net for diabetics. It guarantees emergency access and long-term affordability, and it requires insulin manufacturers to be part of the solution.
Alec’s Law went into effect in July 2020. And while it was met with a lawsuit filed by Big Pharma on the eve of its implementation, a judge dismissed the suit in March 2021. Today it continues to help many Minnesotans afford their life-saving insulin.
Other states have followed Minnesota’s lead, including Maine and Colorado. These state laws are the real change we need to help our country’s most vulnerable achieve the promise of America: the right to life, liberty and the pursuit of happiness.

And until the time comes when insulin is affordable and accessible to all, I will continue to fight to make it so. Because no one should have to go through what Jesse did. And no one should lose their loved one to corporate greed.

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