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Sickle cell treatment improving locally, but still ‘sort of a problem’

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Adult sickle cell disease patients have had a treatment option to reduce pain and the need for blood transfusions for about two decades now.

Hydroxyurea, approved by the U.S. Food and Drug Administration in 1998, still isn’t used as widely as it probably should be, though.

That’s because on one hand, sickle cell disease experts say health care providers don’t have enough knowledge about the medication or view it as too intensive of a treatment (Hydroxyurea is also used to treat cancer of the white blood cells). On the other hand, patients can also lack understanding about their options or have a stigma against medication.

Gary Gibson, president and CEO of the Martin Center Sickle Cell Initiative, believes shortcomings on the provider side lead to reluctance for patients, even if the provider recommends treatment.

“The patient wants to know that the provider knows what they’re doing,” Gibson said. “If they don’t have that comfort level when the doctor says, ‘Hey, I want to try you on this new thing,’ if the patient isn’t comfortable, they’ll be reluctant.”

Gibson said some patients are also nervous about the rare, although sometimes serious, side effects, including hair loss and infertility.

Access to Hydroxyurea has improved over the last year locally, Gibson said, as more doctors are willing to prescribe it and more patients are willing to take it, but it’s still “sort of a problem.”

Hydroxyurea was approved for pediatric patients 2 and older in 2017.

Part of the Martin Center’s role in the community is to make sure patients and providers are educated about sickle cell disease and treatment. The 2020 Indiana Sickle Cell Conference on Sept. 25 features sessions for health care providers, social service providers and patients. Learn more at themartincenter.org.

Dr. Griffin Rodgers, director of the National Institute of Diabetes and Digestive and Kidney Diseases, said another problem is providers who do prescribe Hydroxyurea are sometimes unsure later about how to adjust treatment.

Providers just aren’t confident in what parameters to follow, he said during a recent virtual sickle cell disease workshop hosted by the National Heart, Lung, and Blood Institute.

The FDA has approved other treatments for sickle cell disease in recent years, but Hydroxyurea remains much more accessible financially for patients with inadequate insurance or no insurance. Adakveo and Oxbryta, for example, are each priced at about $100,000 per year — or, in other words, a little more than twice the median household income in Marion County.

Shirley Miller, a 64-year-old sickle cell patient in North Carolina, said most of her severe pain episodes came around her high school years. She’s always worked full time and had private insurance, and she hasn’t had a blood transfusion related to sickle cell disease since 1997.

“I’ve learned how to take care of myself,” Miller said at the sickle cell disease workshop.

Miller said she knows there’s a distrust of the medical field, which is why she thinks education is important. For those struggling with pain episodes, Miller said she started learning how to cope better with hers in her 30s by combining her medication with distractions such as talking to friends and family.

Contact staff writer Tyler Fenwick at 317-762-7853. Follow him on Twitter @Ty_Fenwick.

Indiana Sickle Cell Conference

The 2020 Indiana Sickle Cell Conference will be Sept. 25 and feature sessions for health care providers, social service providers and patients. Learn more at themartincenter.org.

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