WASHINGTON, D.C – An article published Monday in the Annals of Internal Medicine by researchers at Harvard Medical School, the City University of New York’s Hunter College, and Public Citizen provides the first national estimate of how many Americans with diabetes are rationing their insulin now due to cost. They report that 1.3 million Americans — 16.5% of all adults with diabetes who use insulin — rationed the life-saving drug last year to save money.
The researchers analyzed the 2021 National Health Interview Survey carried out by the federal government that collected detailed health information from 29,482 adults representative of the non-institutionalized U.S. population. Their new analysis found about 1.4 million adults with type 1 diabetes, 5.8 million adults with type 2 diabetes, and 0.4 million with other or unknown diabetes type were using insulin. Insulin rationing was assessed with three questions that asked insulin users if they had “skipped insulin doses,” “took less insulin than needed,” or “delayed buying insulin” to save money in the past year. The researchers classified one or more positive responses as insulin rationing.
The investigators’ analysis indicates that 18.6% of individuals with type 1 diabetes (for whom skipping insulin can quickly lead to diabetic coma and death) rationed insulin, compared to 15.8% of those with type 2 diabetes. Rationing was lower among those ages 65 years or older (11.2%) — virtually all of whom are eligible for Medicare — than among those under 65 (20.4%).
Rationing was most common among middle-income insulin-users, 19.8%, while 10.8% of those with higher-incomes and 14.6% of those with low-incomes reported that they had rationed their insulin. The rate of rationing was higher among Black insulin-users (23.2%) than among White and Hispanic insulin-users (16%).
Meanwhile, those with no insurance coverage had the highest rate of rationing (29.2%) followed by those with private insurance (18.8%); those with public coverage had lower rates (e.g. 13.5% among those with Medicare). Finally, the investigators demonstrated that insulin rationing was associated with approximately a 50% increase in the proportion of persons with diabetes who felt overwhelmed by the burdens of living with their illness.
The findings have implications for ongoing policy debates. The 2022 Inflation Reduction Act capped Medicare enrollees’ copays for insulin at $35 per month. The initial draft of that bill would also have capped insulin costs for people with private insurance. However, Republicans stripped that provision from the bill after the Senate parliamentarian ruled that it wouldn’t comply with the budget reconciliation process that Democrats used to pass the cap. As a result, neither the privately insured nor the uninsured — the groups who the new study found most often rationed insulin — have any protection from insulin costs, which can average $1000 per month or more.
“Insulin rationing is frequently harmful, and sometimes deadly,” noted lead author Dr. Adam Gaffney, a pulmonary and critical care physician at Harvard Medical School and the Cambridge Health Alliance. “In the ICU, I have cared for patients who have life-threatening complications of diabetes because they couldn’t afford this life-saving drug. Universal access to insulin, without cost barriers, is urgently needed,” he added.
“Drug companies have ramped up prices on insulin year after year, even for products that remain completely unchanged,” noted senior author Dr. Steffie Woolhandler, distinguished professor at the City University of New York’s Hunter College, lecturer in medicine at Harvard, and a research associate at Public Citizen. “Drug firms are making vast profits at the expense of the health, and even the lives, of patients,” she noted.