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Nearly 1 in 5 U.S. adults with diabetes ration insulin to save money, study finds

Young adults and the uninsured — those who will be left out of the Inflation Reduction Act's monthly insulin cap — were the most likely to ration their medication.
Image: insulin Kit
Alexis Stanley shows her insulin kit, in St. Paul, Minn., in January 2020.Kerem Yucel / AFP via Getty Images file

The cost of insulin remains a barrier for many Americans with diabetes who depend on the drug, research published Monday suggests.

A study in the Annals of Internal Medicine found that in 2021, nearly 1 in 5 adults in the U.S. with diabetes either skipped, delayed or used less insulin than was needed to save money. That comes out to roughly 1.3 million adults, or 16.5% of those who need insulin.

The findings were based on data from the 2021 National Health Interview Survey, which is conducted annually by the Centers for Disease Control and Prevention and which interviews tens of thousands of Americans about their health-related experiences.

It was the first time that the CDC had included questions about insulin use, though concerns about sky-high insulin prices have been reported for years.

“In the ICU, I have cared for patients who have life-threatening complications of diabetes because they couldn’t afford this life-saving drug," said the study's lead author, Dr. Adam Gaffney, a critical care physician at the Cambridge Health Alliance in Massachusetts. 

"Universal access to insulin, without cost barriers, is urgently needed,” he said.

Starting Jan. 1, the Inflation Reduction Act, signed into law by President Joe Biden in August, will cap the monthly cost of insulin at $35 for seniors on Medicare. The bill, however, will leave out millions of Americans with private health insurance as well as those who are uninsured. 

Those two groups reported the highest rates of insulin rationing, according to the new study. Meanwhile, those with public health coverage, such as Medicaid and Medicare, had the lowest rates of rationing.

Insulin rationing was found to be more common among Black Americans, at 23.2%, compared to white and Hispanic Americans, at 16%, according to the research.

It was also found to be more common among people with type 1 diabetes, at 18.6%, compared to those with type 2 diabetes, at 15.8% — a finding that Gaffney said was particularly alarming, because people with type 1 diabetes who don’t take their insulin as prescribed can suffer from multiple long-term health problems, including diabetic coma or death.

Lowering the cost of insulin

Gaffney said the problem is simply that the list price of insulin is too high. 

“We have allowed pharmaceutical companies to set the agenda, and that is coming at the cost to our patients,” he said.

Eric Tichy, who tracks insulin costs as division chair of pharmacy supply solutions for the Mayo Clinic in Rochester, Minnesota, said that a handful of drugmakers — Eli Lilly, Novo Nordisk and Sanofi — dominate the market for insulin in the U.S. Without generic competition, he said, they are able to keep prices high.

In addition, insulin products aren't necessarily interchangeable, Tichy said, so if a patient is taking, for example, a product from Eli Lilly, he or she may not be able to easily switch to Sanofi's product.

As it stands, the government is limited in its abilities to rein in drug costs, experts say.

The U.S. needs additional policies that “improve the affordability of insulin for those who may have inadequate insurance coverage or no coverage at all,” said Juliette Cubanski, deputy director of the program on Medicare policy at KFF, formerly known as the Kaiser Family Foundation.

One approach is for states and other entities to make their own insulin, as California has announced plans to do.

Tichy is a member of the nonprofit drugmaker Civica Rx, which announced in March that it planned to make and sell generic versions of insulin to consumers at no more than $30 per vial and no more than $55 for a box of five pen cartridges. 

According to the American Diabetes Association, people with type 1 diabetes need, on average, two to three vials per month. For the uninsured and those with poor coverage, a month's worth of insulin can cost, on average, $1,000 or more, Gaffney said.

Lawmakers can create policies that target "evergreening," a process in which drug companies make incremental improvements to their products that can extend the life of their patents, Cubanski said.

Gaffney advocated for changes to policies that would lower the list price of insulin.

He said the "most ambitious" proposal he would like to see in the U.S. is universal health coverage with no copays for consumers. He would also like to see a policy that would allow the U.S. to pay the same lower prices that other nations pay for insulin.

"I think we can realize something like that in the United States," he said. "That's obviously a big project, but at the same time we need to get the prices charged by pharmaceutical companies down."

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