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Black diabetes patients welcome Eli Lilly’s price cap, but say systemic medical barriers remain

News last week that drugmaker Eli Lilly would reduce the out-of-pocket cost for its insulin to $35 a month brought some relief. But what remains are the systemic problems with insurance coverage and misdiagnosis that continue to challenge many people with diabetes.

Mila Clark, 33, is among the 12% of black Americans who have been diagnosed with diabetes, the second highest rate after Native Americans.

After being told by her doctor that she had type 2 diabetes, Clark familiarized herself with insurance copay cards and patient programs that provide assistance from insulin manufacturers. If she didn’t, “I would walk out of the pharmacy paying $2,000 for a 30-day supply of insulin, which is like rent or a mortgage,” she said. “As such, no one can afford a payment every month to survive.”

Mila Clarke.
Mila Clarke.Courtesy Mila Clark

The price cap set by Eli Lilly, the nation’s largest insulin maker, will have a huge impact on black people, who are not only more prone to diabetes but also more likely to struggle to pay for the drug. Without the cap, most people with diabetes who are uninsured or underinsured could spend $1,000 or more per month on insulin out-of-pocket.

But beyond the cost of insulin, large structural disparities contribute to poor health outcomes for black Americans, especially those with diabetes. “When you look at communities of color, especially African Americans, they are more likely to be in a job without insurance,” said Otis Kirksey, a pharmacist in Tallahassee, Florida, and a board member of the American Diabetes Association. . He also noted that black people are more likely to live in food deserts and have fewer healthy food options, which means they are “significantly more likely to develop diabetes.”

Black people may experience overdiagnosis for prediabetes or type 2 diabetes, according to a March 2021 report from the Centers for Disease Control and Prevention.

Clark struggled with a misdiagnosis of type 2 diabetes. After countless doctor visits and failed treatments, a meeting with a black female doctor revealed that she did, in fact, have type 1 diabetes.

“It shouldn’t have taken me four years to get a proper diagnosis,” Clarke said. Whenever she went to her previous doctor, she said, “Because I was a young black woman, I never felt like I was being listened to.”

Now, Clark said she takes a long-acting insulin called Tresiba, which costs about $150 for a 90-day supply. She also takes the short-acting insulin Lumjev, which costs $300 for a 90-day supply.

With both diagnoses, Clark received commercial insurance benefits to help with costs.

Meanwhile, Serena Valentine, 39, was misdiagnosed with type 1 diabetes instead of type 2. Over the course of nine months starting in 2017, diabetic retinopathy began to cause vision loss in his right eye. Three days after she had retinal reattachment surgery in 2018, she completely lost sight in that eye.

Serena Valentine.
Serena Valentine.Courtesy Serena Valentine

Then in 2019, she began losing vision in her left eye and refused to have surgery again because what happened to her right eye had left her “traumatic,” she said. She chose not to have surgery, and now has only 35% vision in her left eye.

At the time, Valentine said, she didn’t have insurance, and couldn’t afford to see an eye doctor. Finally, she qualified for Medicaid after her son was born, and learned from an ophthalmologist that her severe vision loss was preventable.

“I was very upset,” Valentine said. “And not only that, the only type of treatment I was offered was surgery.”

Kirksey, who is also a retired pharmacy professor at Florida A&M University, said one of her students was misdiagnosed at a walk-in clinic as having high blood pressure, when she actually had diabetes. Kirksey said this error was rooted in bias by medical professionals involved.

“He was obese. No one ever thought to test his blood sugar. When he finally ended up in the hospital, his blood sugar was over 1,400 mg/dL, Kirksey said, which is 10 times normal. is more. “He died.”

According to the Office of Minorities at the US Department of Health and Human Services, data from 2019 found that black people were twice as likely as white people to die from diabetes and twice as likely to be hospitalized and experience long-term complications with diabetes was 2.5 times higher. Health

“In the ICU, I’ve cared for patients who have life-threatening complications of diabetes because they can’t tolerate this life-saving drug,” said Dr. Adam Gaffney told NBC News last year.

A 2021 report in the Annals of Internal Medicine found that 1 in 5 adults with diabetes in the US skipped insulin, delayed or used less insulin to save money. It also said that insulin rationing was more common among black Americans.

“I have patients who actually, literally, change their dosage recommendations to make sure there’s at least a little bit of insulin, you know, to make it through the whole month,” Kirksey said.

After battling their misdiagnosis and finding solutions to pay for their insulin needs, Clark and Valentine have become advocates for their own health and those of others with diabetes.

Through her YouTube channel, which has more than 36,000 subscribers, Clark answers questions from viewers about living with the disease, including how to self-administer insulin. Valentine runs a health and wellness nonprofit in Houston called the CORE Initiative, which offers diabetes self-management courses and peer support groups. Valentine also encourages patients to visit a doctor when “they notice something that isn’t right,” she said.

Clark said she would like to see the stigma of diabetes come down and more open dialogue between patients and doctors.

“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 people manage their diabetes,” she said. “And ultimately, it will reduce the number of those complications and the frustration and diabetes burnout.”



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