Can’t afford insulin? You’re not alone as it’s a ‘catastrophic health’ expense for than 1 million people with diabetes, Yale finds

Insulin has been available for 100 years to contain diabetes, but a doubling in price in the last 20 years has made it nearly — or totally — unaffordable for low-income Americans, according to a study by a Yale School of Medicine researcher.

Dr. Kasia Lipska, an associate professor specializing in endocrinology, said of the 7 million Americans who require insulin for their diabetes, the cost of the drug is considered “catastrophic health spending” for 1.1 million people.


That means that, after spending for necessities, such as food and housing, insulin makes up 40 percent or more of a person’s remaining available income, she said.

More than 37 million Americans have diabetes, and 96 million have prediabetes, according to the Centers for Disease Control and Prevention, a number that has doubled in the last 20 years. It is the seventh-leading cause of death in the United States, according to the CDC.


While the overall level is 14 percent, “21 percent of people who are covered by Medicare for their insulin reached catastrophic levels of spending,” Lipska said. Those covered by Medicare are the largest group that uses insulin.

“It is a group that is very vulnerable to catastrophic spending. There are a lot of different [Medicare] plans and some plans are really stingy.”

Those who are uninsured are also extremely vulnerable, Lipska said.

Most people with diabetes are insured by Medicare, 41%, or private insurance, 35.7%.

People covered by Medicaid “were relatively protected” from catastrophic spending “compared to people covered by Medicare,” she said.

“Insulin’s been around for 100 years. It’s an old medicine,” Lipska said. ‘The insulin we use today is the same we used 20 years ago and even in that span of time the price has gone up 200 percent.”

Part of the price issue is because insulin is manufactured by just three companies: Eli Lilly & Co., Novo Nordisk Inc. and Sanofi.

“The second reason is there are these sort of middlemen, pharmacy benefit managers,” she said. “They negotiate for drugs on behalf of health plans but they also keep a profit.”


Lipska said she and her co-authors were led to do the study by all the news about how high insulin prices are, “and of course they are,” she said.

“We looked at out-of-pocket spending on insulin in relation to how much the person had in resources,” she said.

Spending on insulin is only part of the expense of treating diabetes, she said. People must buy test strips, other diabetes medicines, glucose monitors, insulin pumps and health care visits.

They found “the odds of catastrophic spending do not differ by age, sex, race, ethnicity, region of the United States, but it does differ by what insurance carrier covered their insulin,” Lipska said.

The study was published Tuesday in the journal Health Affairs.

Lipska said there is legislation to address the issue, but that it may not be adequate for those of low income. “Lots of states, including Connecticut, have imposed caps on copays for state-insured plans,” she said.


In 2020, Gov. Ned Lamont signed a bill capping copays for insulin and other diabetes medications at $25 for a 30-day supply.

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A bill known as the Affordable Insulin Now Act has passed the U.S. House of Representatives and is awaiting action in the Senate. That would cap copays at $35.

That cost “may sound relatively modest … but it depends,” Lipska said. “Even that $35 may put some people over that catastrophic spending limit.” The bill doesn’t cover Medicaid because “it’s relatively generous. Most states have no copay on insulin or very minimal ones,” she said.

But it also doesn’t cover uninsured patients.

“You’re having the most problems having income to cover your insulin but you’re not included in that proposed bill,” Lipska said.

“I think we need to do better in terms of protecting our patients who need insulin,” she said. “It’s shocking to me that so many Americans are at catastrophic levels of a drug that’s been around for 100 years.”


The study included data from the most recent Medical Expenditures Panel Survey, which covered 2017 to 2018.

Contact Ed Stannard at