Americans Have to Ration Life-or-Death Medication

Similar to the Inflation Reduction Act, the BBB was the House’s proposal for budget reconciliation, which aimed to cap copays for those with private insurance and Medicare. Unlike the IRA, BBB included language that would have explicitly allowed Medicare to negotiate insulin prices and would have included penalties for manufacturers that raise prices faster than inflation.

Says Whitney Daniels, “It’s frustrating and beyond disappointing that [the IRA] used the very same language, and did not propose other ways we could have helped people with diabetes and pass the Parliamentarian — like a price cap for the uninsured, which was supported by many members of Congress.”

Because the Inflation Reduction Act did not include “insulin-specific provisions,” Matt McConnell, an economic justice and rights researcher with Human Rights Watch, explains, it’s unlikely that “the most common forms of insulin” will be eligible for Medicare price negotiations in 2026.

The bipartisan Shaheen-Collins INSULIN Act: expensive for the US, big win for pharmaceutical manufacturers

With the IRA signed, the next most likely path for federal insulin legislation is the bipartisan Shaheen-Collins INSULIN Act. However, in a letter to Sen. Susan Collins (R-ME) and Sen. Jeanne Shaheen (D-NH), issued on July 22, the Congressional Budget Office’s (CBO) director explained the INSULIN Act would lower the list (or wholesale) price, which would help the uninsured. But it would likely raise the net price (the price after all discounts and rebates) that insured diabetics pay to pick up their insulin prescription, something patient advocates don’t want. The CBO estimates premiums for health insurance overall would also increase if this bill were passed — more potential fallout that patients wouldn’t be happy about.

T1International’s policy manager Shaina Kasper explains, “T1I has a member-led legislation endorsement process” that didn’t endorse the Affordable Insulin Now Act or the INSULIN Act. When the INSULIN Act was originally introduced, Whitney Daniels and their team “sent in thousands of comments to say that we needed help for the uninsured, we needed a cap on list prices. And then nothing changed.” According to the CBO letter sent to Sen. Collins and Sen. Shaheen, “certification,” the mechanism to lower list prices, “would be a voluntary process, and CBO expects that manufacturers would certify an insulin product if it was financially advantageous for them to do so.”

Though T1International did not endorse the INSULIN Act or the Affordable Insulin Now Act, JDRF and the American Diabetes Association, diabetes nonprofits that accept donations from insulin manufacturers, have supported both bills. As health care publication STAT reported, “Overall, the [INSULIN Act] would likely reduce profits for pharmacy benefit managers and insurance companies and cost the federal government money. It likely wouldn’t affect drugmakers’ bottom lines.”

In the future, the INSULIN Act allows drugmakers to raise insulin prices with inflation, according to STAT. And as Kevin Riggs, MD, the coauthor of a 2015 study on insulin, told NBC News, insulin manufacturers use a process called “evergreening” to renew patents on old drugs (discouraging the development of generic drugs) by making small changes, such as tinkering with a molecule or changing the delivery system. This allows them to charge whatever insulin-dependent individuals will pay. And, Dr. Riggs told the outlet, increasingly complex supply chains have added to the astronomical costs. 

Uninsured diabetics most likely to die from rationing are left out of insulin legislation

Lauren Figg, MSW, is the sustainability working group leader at Mutual Aid Diabetes (MAD). She helps connect diabetic community members with long-term solutions to obtaining insulin, insulin-resistance medication, and supplies. Figg tells Teen Vogue that the legislation proposed so far, like copay caps, leave out “the most vulnerable diabetics — the uninsured, who are most at risk for hospitalization for rationing and complications.”

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