Outrage of the Month: Lifesaving Insulin Remains Unaffordable for Too Many U.S. Patients

Health Letter, January 2023

By Michael Carome, M.D.

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Image: Daniel Beckemeier/Shutterstock.com

Over the past several years, unaffordable prices for synthetic insulin — a drug that is lifesaving for diabetes patients, particularly those with type 1 diabetes whose pancreases no longer produce this hormone — have attracted widespread attention from the health care community, patient advocates, politicians and the media.

In particular, disturbing reports of diabetes patients dying because they could not afford enough insulin to adequately treat their illness and had to resort to rationing the drug have prompted condemnation of Big Pharma’s relentless price-gouging practices.

A study published in the November 2022 issue of the Annals of Internal Medicine shed new light on the extent of insulin rationing by diabetes patients in the U.S. For this study, researchers at Harvard Medical School, the City University of New York and Public Citizen’s Health Research Group analyzed data from the Centers for Disease Control and Prevention’s 2021 National Health Interview Survey (NHIS) that collected detailed health information from a random selected sample of more than 29,000 adults who were representative of the non-institutionalized U.S. population.

For the 2021 NHIS, adults diabetes patients who used insulin were asked whether they “skipped insulin doses,” “took less insulin than needed,” or “delayed buying insulin” to save money in the preceding 12 months. The Annals of Internal Medicine study researchers considered a positive response to any of these questions to be indicative of insulin rationing.

The researchers’ study sample included 982 diabetes patients who used insulin, which was representative of 1.4 million adults with type 1 diabetes, 5.8 million with type 2 diabetes and 400,000 with other or unknown types of diabetes. The researchers found that an estimated 16.5% of insulin users rationed insulin during 2021, which corresponded to a stunning 1.3 million diabetes patients nationwide.

Insulin rationing during 2021 was reported by 11% of adults with diabetes age 65 or older, compared with 20% of adults younger than 65. Among Black patients, 23% rationed their insulin, compared with 16% of White and Hispanic patients. Not surprisingly, uninsured patients had the highest rate of insulin rationing at 29%, followed by 19% of those with private health insurance, 14% of Medicare beneficiaries and 12% of Medicaid patients.

The 2022 Inflation Reduction Act (IRA) included provisions that capped Medicare beneficiaries’ copays for insulin at $35 per month, which should mitigate insulin rationing among seniors. Disappointingly, provisions that would have capped out-of-pocket insulin costs for patients with private insurance were stripped out of the IRA before the bill was passed by Congress. Moreover, such copay caps would not help patients lacking health insurance.

As Dr. Adam Gaffney, the lead author of the Annals of Internal Medicine study and a pulmonary and critical care physician at Harvard Medical School, stated, “Insulin rationing is frequently harmful, and sometimes deadly… Universal access to insulin, without cost barriers, is urgently needed.”

The World Health Organization includes insulin on its Model List of Essential Medicines, which means the drug should always be available at all times in adequate amounts at an affordable price. Disturbingly, insulin, like many other drugs, is not treated as an essential medicine in the U.S.

The newly seated Congress must pass further legislation that stops Big Pharma’s endless price gouging and ensures that all patients have access to insulin — and all other essential medications — at an affordable price.