Editor’s note: Janelle Lutgen, of Bernard, Iowa, is an advocate for Families United for Affordable Insulin and leads the Iowa chapter of #insulin4all, both affiliated with T1International, a nonprofit led by people with and affected by type 1 diabetes. 1. She is also a former chairwoman of the Republican Central Committee of Jackson County, Iowa. The opinions expressed in this commentary are his own. See more opinion on CNN.
On February 7, 2018, my son Jesse Lutgen, 32, was found dead in his home. Unbeknownst to me, he had rationed his insulin, after losing his full-time job and health insurance the previous November. Jesse had looked into Obamacare market health plans for coverage, but he just couldn’t afford a policy on his part-time salary with a local YMCA.
The last insulin he used was from bottles I gave him before he lost his insurance. These were the remains of a diabetic friend of a deceased friend in Washington State.
This black market in insulin and other essential drugs is a reality in America. One in four diabetics ration their insulin or “report cost-related underuse of insulin”. Right Care Alliance, a coalition of patients and providers, has documented the deaths of at least 14 diabetic Americans who died from rationing since 2017, including my son. It is not known how many more died from diabetic complications due to rationing.
Families of diabetics who die 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, supporters send insulin to diabetics. Members of online diabetes communities ship lifesaver vials at their own expense.
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 uninsured people. A month’s supply can cost upwards of $1,000, which I didn’t learn until after Jesse left.
He believed in making a living, even though he was battling a serious health issue, and did not ask for help. Although insulin rationing does not always lead to death, high blood sugar can, when left unchecked, wreak havoc on a diabetic’s body, leading to irreversible long-term complications.
Advocates for T1International, a nonprofit led by people with and affected by type 1 diabetes, and its state chapters, #insulin4all, have been fighting for change. While I am grateful for the legislation that will do so much for some, the Inflation Reduction Act (IRA) is insufficient for most diabetics. It will cap insulin co-payments for Medicare beneficiaries but will not reduce the list price of insulin. Instead, high costs will be shifted elsewhere.
And uninsured diabetics, like my late son, remain vulnerable. The IRA will have no impact on the list prices paid by the uninsured.
When a co-payment cap of $35 for privately insured was voted for reconciliation during debate on the bill, the Senate parliamentarian, who oversees the proceedings, ruled that it was not eligible because it did not respect the budgetary rules.
A vote to overturn the congressman failed, most Republicans including the senses. Chuck Grassley and Joni Ernst of Iowa, my home state, voting no. Shortly after, a 2020 video of Ernst talking about the need to cut 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 intended to save people like him. Our history may be great fodder for campaigns and political divisions, but measures to lower list drug prices to help everyone are the real solution. Hopefully excluding caps for policyholders will keep this issue front and center and prompt lawmakers to address the root cause of high prices.
It’s time for Congress to introduce a stand-alone bill to reduce 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 agreements where brand name drug makers offer patent settlements that pay generic companies for not bringing cheaper alternatives to market. Call for price transparency from Big Pharma and Pharma Benefit Managers, the intermediaries between insurance and pharmaceutical companies. These are ideas that can help lower list prices, not just for insulin, but for all medications.
Many bills have been introduced over the past few years to focus solely on lowering prescription drug prices, but none have come to fruition.
In the meantime, insulin affordability advocates have worked hard 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 demands that insulin manufacturers be part of the solution.
Alec’s Law went into effect in July 2020. And although it was the subject of a lawsuit filed by Big Pharma on the eve of its implementation, a judge dismissed the suit in March 2021. Today, she continues to help many Minnesotans afford their lifesaving insulin. .
Other states have followed Minnesota’s lead, including Maine and Colorado. These state laws are the real change we need to help our nation’s most vulnerable realize America’s promise: the right to life, liberty, and the pursuit of happiness.
And until insulin is affordable and accessible to everyone, I will continue to fight for it to be so. Because no one should have to go through what Jesse did. And no one should lose their loved one to corporate greed.