More than One Million Americans are Rationing Their Insulin

America’s insulin affordability crisis is not getting any better. The latest data shows that upwards of 1.3 million Americans may be rationing insulin due to its high price.

The update comes courtesy of a new analysis published last week in Annals of Internal Medicine (the full text of the article is behind a paywall, but can be glimpsed in a tweet by the journal.) The authors, three doctors associated with Harvard Medical School, looked at data from the CDC’s National Health Interview Survey (NHIS), an annual statistical review of the nation’s health.

About 6 million Americans with diabetes – including type 1 and type 2 as well as less common variants – require insulin for their condition. The NHIS survey suggests that about 20 percent of those 6 million are rationing their insulin: delaying the purchase of insulin, taking smaller doses, or skipping doses entirely.

Insulin rationing can have dire health consequences. In the worst cases, it can lead to swift death. Even when insulin rationing is not immediately lethal, it hastens the development of diabetes complications, from painful neuropathy and eye damage to kidney disease and heart failure.

The results of the new survey showed that patients under the age of 65 were significantly more likely to ration insulin than those over 65. Those with type 1 diabetes were slightly more likely to ration than those with type 2; Black patients were more likely to ration than white and Hispanic patients. Perhaps surprisingly, middle-income adults were found to ration insulin more frequently than low-income adults, perhaps an indication that those ineligible for Medicaid get squeezed worst by high prices.

Previous studies have found similar results. In 2020, we here at Diabetes Daily partnered with Thrivable to conduct a survey on insulin affordability. Nearly 50 percent of our panel struggled to pay for their insulin, with about one-third intentionally reducing or skipping vital insulin doses — and suffering negative health consequences as a result. This also may have been the first survey to show that the COVID-19 pandemic had only made the insulin affordability crisis worse in the United States.

A recent analysis in Health Affairs outlined the state of “catastrophic” spending on insulin, defined as “spending more than 40 percent of their postsubsistence family income on insulin alone.” The authors found that “Among Americans who use insulin, 14.1 percent reached catastrophic spending over the course of one year, representing almost 1.2 million people.”

Another recent study, performed by CharityRx, found that an astounding 80 percent of patients have “taken on credit card debt to afford insulin.” A majority have also had to cut costs elsewhere to afford their life-or-death medication. And 62 percent have done some rationing of insulin, many of whom report immediate negative impacts on their daily life.

One can only assume that the situation has gotten even worse since the pandemic, which only served to widen the wealth inequality gap.

America’s failure stands in embarrassing contrast to the experience of our neighbors and of other affluent nations. A 2018 survey from T1International found that insulin rationing was more than five times as common in the United States than it was in other high-income countries. Every year, people with diabetes stream across the border to pharmacies in Mexico and Canada, where insulin can be purchased for a mere fraction of its American price.

(As disappointing as America’s performance is, the situation is far worse in many other parts of the world. In the poorest nations, type 1 diabetes can still be a death sentence, and insulin and healthcare access issues conspire to steal decades of healthy life from the typical diabetes patient.)

American politicians have regularly proposed solutions to the insulin affordability crisis, and generated quite a bit of press for doing so, but as of yet there’s been little effective federal movement on the issue. This summer, the US Senate voted to reject a provision that would have capped private insurance co-pays for insulin at $35 per month, even while approving a similar cap for Medicare recipients. Several states have also passed their own copay limits.

None of those measures, however, are designed protect the most vulnerable Americans: the uninsured. An analysis by Peterson-KFF suggested that only about 25 percent of people with private or employer insurance would have saved money under the new national rule that the Senate rejected, suggesting that many of the people directly covered by the proposed act didn’t really need the help.

The new report in Annals of Internal Medicine found that the uninsured were by far the subgroup most likely to ration insulin. About 29 percent of the uninsured rationed insulin in 2021, compared to 19 percent of those on private insurance. Patients enrolled in Medicare or Medicaid had even lower rates of rationing.

If you’re in need of insulin right now, you’ve got options. Almost every pharmaceutical program offers financial assistance for its products. If the need is urgent, call 911 or get yourself to an emergency room. All patients with type 1 diabetes (and some with type 2 diabetes) are at risk of diabetic ketoacidosis, a potentially deadly condition. Lack of insulin is a life-threatening emergency, and hospital staff cannot decline to treat you even if you lack insurance or the ability to pay.

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