Diabetes advocates cross their fingers as a bipartisan bill revives efforts to lower insulin costs

NEW YORK– Two-year-old Brandon Bain has type 1 diabetes and needs insulin to survive. But even with health insurance, the price is not cheap.

A month’s supply of insulin vials and a three-month supply of emergency pens for the Mississippi toddler cost his parents $194 last week, according to his mother, Marlee Brandon, 29. They can afford it now, but she worries about the future.

“One day Bain will be an adult and he will no longer be able to benefit from our insurance,” she said. “I feel like a lot of people don’t realize how much it costs and how much it costs.”

A bipartisan group of senators aims to ease that financial burden with the INSULIN Act, a bill aimed at capping the cost of the life-saving drug at $35 a month for Americans with private insurance plans. The bill, introduced last week by Senators Jeanne Shaheen, Democrat of Maine, Raphael Warnock, Democrat of Georgia, Susan Collins, Democrat of Maine, and John Kennedy, Democrat of Los Angeles, would also launch a pilot program to provide more affordable insulin to uninsured Americans in 10 states. A somewhat similar bill was passed in 2022, as part of the Biden-era Inflation Reduction Act, a sweeping Democratic agenda that successfully capped the drug at $35 a month for seniors on Medicare.

The legislation, the latest in a long effort by some lawmakers in both parties to rein in the price of insulin, faces numerous hurdles, including concerns about the cost and other competing congressional priorities. Yet with Trump in the White House and Congress now controlled by his Republican Party, it creates an opportunity for a rare bipartisan victory on health care affordability in a year when rising health care costs are a concern to voters in both parties.

In the United States, about 8.1 million people use insulin, according to the U.S. Centers for Disease Control and Prevention. This includes more than 2 million people with type 1 diabetes who will die without regular access to insulin. The medication also helps control glucose levels in people with other types of diabetes.

But the price of insulin can vary widely. While some people with private insurance pay nothing or very little, others pay hundreds of dollars each month in addition to other costs related to their diabetes, like pumps, blood glucose sensors and other supplies.

In addition to the 2022 law reducing insulin costs for Medicare beneficiaries, more than half of states in recent years have adopted their own co-pay caps for insulin, ranging from $25 to $100 per month for patients with state-regulated insurance plans.

Major insulin manufacturers Eli Lilly, Sanofi and Novo Nordisk have also moved to reduce the cost of insulin, with various combinations of reducing list prices, capping out-of-pocket costs and increasing affordability.

However, not all patients are covered. About 57% of Americans with private health insurance have self-insurance plans that states cannot regulate, according to Matthew Fiedler, a senior fellow at the Center on Health Policy at the Brookings Institution. That means they are excluded from the state’s cost-cap bills. Some patients are also uninsured or have difficulty accessing manufacturers’ cost-reduction programs.

“It puts the onus on the patient, I think, to try to navigate it and keep the costs down,” said Dr. Leslie Eiland, an adult endocrinologist at the University of Nebraska Medical Center who is advocating with the Endocrine Society for the latest bill.

Oliver Bogillot, Sanofi’s head of general medicines for North America, said in a statement that “no one should have trouble getting their insulin” and touted the company’s savings program that includes people without health insurance. Flavia Brakling, a spokeswoman for Novo Nordisk, said expanding affordable access to medicines was a priority and noted that the company had not increased the list prices of its insulin products for 2026.

Chanse Jones, a spokesperson for pharmaceutical companies’ leading trade association, PhRMA, said pharmacy benefit managers and insurers create barriers to access and affordability for patients, even as manufacturers try to expand access.

“We look forward to working with policymakers to ensure that middlemen do not come between patients and their medicines,” he said.

Although the new INSULIN law has bipartisan support, it wouldn’t be the first time such legislation has appeared to gain momentum, only to fail.

In 2022, the House passed a $35 monthly insulin cap that would have applied to Americans with private insurance, but it did not pass the Senate.

A similar attempt to include it in Democrats’ inflation reduction bill that year ultimately failed after Republicans opposed it, saying the attempt violated Senate rules.

Breana Glover, a 23-year-old restaurant waitress in Houston, moved to Texas from California because she needed lower living expenses to cover the high healthcare costs associated with her Type 1 diabetes.

Paying for your insulin and other supplies is a balancing act. To pay her $50 co-pay for four vials of insulin, she limits her carbohydrate intake. This way, she can use less insulin each day and make it last longer.

Glover said a cap of $35 per month would be a “small step toward making everything even more accessible,” in addition to helping cover items like groceries and gas.

Advocates expect the young adult population to particularly benefit from the bill, as many struggle to obtain high-quality health insurance plans or any insurance at all if they can’t access the plans through their parents, said Manny Hernandez, CEO of The Diabetes Link, a national nonprofit for young adults with diabetes.

Hernandez said he is encouraged by recent meetings with Republican members of Congress from his home state of Florida, but worries that other priorities could stifle the bill, as has happened in the past.

“There are a lot of distractions and a lot of important things happening,” he said. “But I don’t lose hope.”