Insulin: Over a million people in the US ration drug because of high costs

An estimated 1.3 million adults with diabetes in the US rationed their insulin supply in 2021 to save money, according to the results of a national survey

By Grace Wade

An estimated 1.3 million adults in the US with diabetes ration insulin due to high costs, increasing their risk of diabetes-related complications like organ damage, blindness and even death.

In the US, drug manufacturers charge nearly $100 on average for a standard unit of insulin compared with $12 in Canada or $7.52 in the UK. Depending on their health insurance, some people in the US pay next to nothing for insulin, while others end up fronting the full cost.

Adam Gaffney at Cambridge Health Alliance in Massachusetts and his colleagues looked at data from the 2021 National Health Interview Survey to see how such costs impact insulin use. Each year, the US Centers for Disease Control and Prevention administers the survey to adults from a sample of US households to collect data on income, health status, insurance coverage and more.

In 2021, 982 people who have diabetes and use insulin responded to the survey, which for the first time, asked whether they had skipped insulin doses, took less insulin than needed or delayed buying insulin in the past year to save money. Around 16.5 per cent of the group answered yes to at least one of those questions. The CDC designed the survey to be nationally representative, so Gaffney and the team extrapolated from it to estimate that around 1.3 million American adults with diabetes ration insulin.

“That says something very troubling about the state of our healthcare system,” says Gaffney. Without insulin, many people with diabetes cannot control their blood sugar levels, which increases their risk of chronic complications, he says.

People without health insurance had the highest rates of insulin rationing with nearly 30 per cent limiting insulin use. About 19 per cent of people with private health insurance also rationed insulin versus 16 per cent of those with Medicare, the federal health insurance programme for people 65 years and older. This is probably due to high out-of-pocket costs associated with some private insurance plans, says Gaffney.

People who were Black, under the age of 65 or considered low-to-middle income were also more likely to ration insulin compared with people in other socioeconomic groups. These demographics are already known to face higher insulin costs due to healthcare disparities, says Andrew Mulcahy at the RAND corporation in Washington DC.

Earlier this year, Congress passed legislation as part of the Inflation Reduction Act that capped insulin costs at $35 for Medicare recipients. An earlier provision of the bill included a similar cap for people with private insurance, but this was removed during negotiations.

“I don’t think it will dramatically move the needle because the Medicare population is already doing relatively well on this measure,” says Mulcahy. “To really address the root issue, you also need to think about getting to patients with private coverage, and most importantly, to patients without any coverage at all.”

Journal reference: Annals of Internal Medicine, DOI: 10.7326/M22-2477