Insulin Rationing Common Among Patients With Diabetes

More than a million Americans with diabetes may be skipping insulin doses or delaying purchase of the drug because of its expense, said authors of a new study.

Based on data from 982 insulin users participating in the CDC's 2021 National Health Interview Survey (NHIS), 16.5% reported some form of rationing the drug (95% CI 13.8%-19.6%), according to Adam Gaffney, MD, of Harvard Medical School in Cambridge, Massachusetts, and colleagues.

If that finding is representative of all Americans with diabetes, it could mean more than 1 million patients are rationing insulin with potentially harmful consequences, the researchers wrote in a brief report published in Annals of Internal Medicine.

The survey asked adult insulin users with type 1 or 2 diabetes if they had skipped insulin doses, took less than needed, or delayed buying insulin in the past 12 months to save money. Gaffney's team considered any positive response an indication of rationing. The most common form of rationing was delayed purchase (14.2%), followed by taking less than needed (10.6%), and skipping doses (9.6%), the study found.

"Several factors likely underlie our findings. Insulin prices in the United States are far higher than in other nations. Moreover, pharmaceutical firms have increased insulin prices year upon year, even for products that remain unchanged," Gaffney and colleagues said.

"Previous research, media reports of deaths due to insulin omission, and the established pathophysiology of diabetes indicate that cost-related nonadherence to insulin can have serious, even fatal outcomes," they noted.

Insulin rationing varied among subgroups. Among adults 65 or older, 11.2% reported rationing, compared with 20.4% of younger persons. Among those with higher incomes, 10.8% reported rationing, compared with 19.8% of middle-income and 14.6% of low-income persons. Among Black participants, 23.2% rationed insulin, compared with 16.0% of white and Hispanic individuals.

Rates of rationing were highest among the uninsured (29.2%), followed by those with private insurance (18.8%), other coverage (16.1%), Medicare (13.5%), and Medicaid (11.6%), the study found.

Gaffney's group also investigated whether rationing was associated with feeling "overwhelmed by the demands of living with diabetes" in the past month. Survey responses were dichotomized as "sometimes, usually, or always" versus "rarely or never." After adjustment for sociodemographic variables, there was a significant association with feeling overwhelmed (prevalence ratio 1.48, 95% CI 1.20-1.76).

In an email to MedPage Today, Gaffney said, "Physicians should be aware of the financial barriers their patients face and prescribe less expensive versions of drugs, assuming it is clinically appropriate and there are multiple, equally effective alternatives."

"But often there is not, which is yet one more reason why we need fundamental reform in how we procure and provide prescription medications," he added. "Cost barriers are a tax on illness: we don't need copays or deductibles on insulin, truly nobody uses more than they need. In my opinion, insulin -- like all essential medications -- should be free for all."

Insulin prices are higher in the United States than other countries in part because the federal government does not use its purchasing power to negotiate lower prices, Gaffney said. "So we pay pharmaceutical companies twice as much for their drugs as other high-income nations. Second, we lack a universal healthcare system with full coverage of medications, so patients pay significant amounts out-of-pocket, or even the full sticker price if they are uninsured. It is a dysfunctional system that has caused patient deaths."

In a statement accompanying the study, the investigators said 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, they said.

That provision wasn't included in the final legislation, however. "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 $1,000 per month or more," Gaffney's group asserted.

Limitations of the study included the self-reporting of outcomes and diagnoses, the researchers noted. In addition, the NHIS did not collect data on potential consequences from insulin rationing, such as organ damage or hospitalizations for ketoacidosis.

Comment