It’s been a month since the Food and Drug Administration greenlit two gene therapies for people battling sickle cell disease. The news opened a glimmer of hope, but many questioned the accessibility of the treatments.
For Andrea Hall, the new authorization of breakthrough treatments, Casgevy by Vertex Pharmaceuticals and Lyfgenia by Bluebird bio, is a stride in the right direction, especially for Black people, who are disproportionately impacted by the disease.
“Sickle cell disease primarily affects people of color,” Dr. Nadia Taylor of Florida’s Banyan Health Systems told Atlanta Black Star. “It’s a disease of the hemoglobin, which is an oxygen-carrying molecule in your blood, specifically your red blood cells. It causes the red blood cells when they’re under stress, specifically, low oxygen conditions…to turn into a half-moon shape. And that’s important because your red blood cells go everywhere in your body and circulate throughout.”
The disorder can cause pain and significant health problems for those living with it. Hall’s daughter, Shakira Martin, passed away at age 30 from complications of the disease in August 2016. She is continuing her daughter’s legacy through Shak’s Hope. This nonprofit foundation advocates for and helps improve the lives of those with sickle cell disease, specifically in Florida and Jamaica.
“I’m excited about the therapies. However, we are still concerned about cost and accessibility. Who has access and how will the cost be covered for a drug that’s over a million dollars,” Hall told Atlanta Black Star during a phone interview.
The cost of the historic treatments is high. The pharmaceutical and biotech giants behind the therapies, Vertex and Bluebird bio, have priced it at $2.2 million and $3.1 million, respectively, BioPharma Dive reported.
Both companies hinted at looking into “outcome contracts,” which would reimburse patients based on how effectively the…
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