Drugmaker Eli Lilly recently announced it is capping the out-of-pocket cost of insulin at $35 a month. However, Black people with diabetes face other barriers to care, including misdiagnosis, underdiagnosis and insufficient insurance coverage.
About 12% of Black Americans have diabetes, according to the American Diabetes Association. Mila Clarke, who has type 2 diabetes, told NBC News that if she hadn’t researched patient programs and insurance co-pay cards, she would have “walked out of the pharmacy paying $2,000 for a 30-day supply of insulin, which is like rent or a mortgage. Like, nobody can pay that every single month just to stay alive.”
Although the price cap on insulin is welcome relief to many with diabetes, Black people are not only more likely to develop diabetes but also to struggle to afford insulin. The cost of insulin for most people with diabetes who are uninsured or underinsured can reach upward of $1,000 per month.
“When you look at communities of color, particularly African Americans, they’re more likely to be in a job without insurance,” Otis Kirksey, a Tallahassee-based pharmacist and board member of the American Diabetes Association, told NBC. He also said that Black people have “significantly higher” chances of developing diabetes based on where they live—for example, because they are more likely to live in areas where affordable, nutritious food options are scarce.
What’s more, Black people are often underdiagnosed or, like Clarke, misdiagnosed. Clarke was initially diagnosed with type 2 diabetes, but many doctor’s visits and failed treatments later, a Black female doctor told her that she in fact had type 1 diabetes.
“It shouldn’t have taken four years for me to get a proper diagnosis,” Clarke said. “Because I was a young Black woman, I did not ever feel listened to.”
Misdiagnosis of diabetes can lead to serious health complications, including vision loss and death in some cases.
Kirksey recalled how a student of his at Florida A&M University was misdiagnosed at a walk-in clinic as having high blood pressure when he in fact had diabetes. Kirksey said bias by medical professionals was at the root of the misdiagnosis. The student, who had obesity, ended up in the hospital, where his blood sugar was found to be 10 times higher than average. “He died,” Kirksey said.
A 2021 report by Annals of Internal Medicine found that about one in five adults in the United States with diabetes skipped, delayed or used less insulin to save on costs. The report also stated that Black Americans are more likely to ration their insulin. Kirksey said he has had patients who “changed their dosing recommendations to ensure that they at least have a little bit of insulin, you know, to make it throughout the month.”
Clarke has a YouTube channel dedicated to answering questions about living with diabetes; it has more than 36,000 subscribers. She hopes to reduce the stigma surrounding diabetes and encourage open conversations between patients and doctors to “reduce those numbers of complications and frustrations and diabetes burnout.”
“I think if physicians were better prepared to have those conversations and to lend those resources to people with diabetes at diagnosis, it would change the way that people manage diabetes,” she said.