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  • A new study finds that 1.3 million Americans may be rationing insulin due to costs.
  • Insulin prices have been rising for decades, nearly tripling between 2002 and 2013.
  • Insulin rationing is highest among the uninsured and those with private insurance.

Around one in five Americans with diabetes may be rationing their life-saving insulin, a new study from Harvard Medical School in Boston and Hunter College in New York suggests.

That could add up to as many as 1.3 million of the more than 6 million diabetic Americans who require insulin to ration the drug, leading to potentially serious health complications and even death.

“The most obvious danger of rationing is lack of glycemic control,” Brandy Lipton, PhD, a visiting associate professor of health, society, and behavior at the University of California, Irvine’s program in public health, told Healthline. “The clinical literature suggests that poor glycemic control may contribute to blindness, kidney failure, and even increased mortality.”

Insulin prices have been rising for decades, nearly tripling between 2002 and 2013.

In recent years news outlets have reported that some diabetic Americans have died from rationing their unaffordable insulin.

In the meantime, major insulin manufacturers say they have attempted to fill some of these gaps in affordability with coupons, multipack discounts, and voluntary cost caps on the drug for both insured and uninsured Americans.

There have also been several attempts to legislate insulin price caps at the federal level, most recently in the Inflation Reduction Act, which caps insulin co-pays under Medicare to $35 per vial and allows Medicare to negotiate insulin prices. The Act also contained a provision that would have capped prices for those covered by private insurance, but congressional Republicans blocked that measure.

Those Medicare price caps address a definite need, however, said Ari Parker, JD, Senior Medicare Advisor at Chapter, a Medicare advisory firm.

“In some states, such as Connecticut, New Jersey, and Maine, some Medicare beneficiaries without insulin coverage were required to pay more than $10,000 out of pocket,” Parker told Healthline. “Even worse, our researchers found that a single insulin drug’s price can vary drastically from one zip code to another — sometimes even if these zip codes are across the street from each other.”

“Most people ration their insulin because they cannot afford it,” Lipton said. “Since the average out-of-pocket costs for insulin were higher than $35 per month before this policy, the cap should reduce rationing. The question is, by how much? The cap will reduce costs on average, and by a substantial amount for people with the highest costs, but it may still be too expensive for some adults with diabetes.”

While new regulatory provisions for Medicare will help partially close a fiscal gap among insulin users, it’s likely to fall short without addressing the private market and the uninsured.

For instance, in this new study in the Annals of Internal Medicine, researchers found that only 11.2% of patients over the age of 65 – the age of Medicare eligibility – were rationing insulin, compared to 20.4% of those younger than that.

They also found that insulin rationing was highest among the uninsured and those with private insurance and lowest among those enrolled in Medicaid, the federal and state low-income healthcare program.

“The original proposal for the $35 per month insulin cap included the privately insured. Data from the Kaiser Family Foundation suggests that one-in-five privately insured insulin users would benefit from such a policy,” Lipton explained. “In lieu of a national policy, state and drug company policies could cap out-of-pocket insulin costs for the privately insured and uninsured. While only about 2 percent of adults with diabetes do not have any insurance, this group is likely to struggle the most with the costs of insulin and also deserves attention in policy discussions.”

Among developed countries, insulin rationing appears to be a more or less uniquely American problem.

“Today, Americans pay two to three times what citizens of other countries pay for prescription drugs, and more than a quarter of patients with type 1 diabetes reported rationing insulin at least once in the previous year,” said Sara Izadi, PharmD, senior vice president of pharmacy at Capital Rx, a Pharmacy Benefit Manager (PBM). “By comparison, roughly 5 percent of respondents from high-income countries other than the US reported rationing in the past year.”

“Other high-income countries have the ability to negotiate prices, as well as some form of national healthcare system, whereas the United States does not, which may account for the differences,” she added.

Outside of the physical effects of rationing insulin, Lipton said we might consider expanding access to cheap insulin as having a holistic health benefit.

“While less studied, not being able to afford a needed medication may also have mental health effects,” she said. “We know that gaining health insurance coverage and financial protection from medical costs improves mental health more generally. This could apply to the costs of managing diabetes too.”

In the meantime, if you’re considering rationing insulin, there are resources that can help. Check out this guide on how to afford insulin if it costs too much for more info.