New sickle cell treatment sparks feelings of hope and some hesitancy among Black patients

By Claretta Bellamy, NBC

The Food and Drug Administration on Friday approved a new gene-editing therapy to treat sickle cell disease, a debilitating blood disorder that affects at least 100,000 Americans, most of whom are Black. The treatment, called Casgevy, is the first approved medicine in the U.S. to use the groundbreaking gene-editing tool CRISPR to alter DNA. 

The new therapy, from Vertex Pharmaceuticals and CRISPR Therapeutics, is, experts say, a stunning advancement in medicine. The treatment, however, also sparks mixed feelings among both Black sickle cell patients and doctors, who are concerned about potential side effects, costs and access to the therapy, will cost $2.2 million per patient, according to Vertex Pharmaceuticals.

Excitement about the treatment — which would eliminate the need for bone marrow transplants to cure the disease — is also colliding with some lingering feelings of distrust of the medical system among parts of the Black community. It’s the first time a therapy that uses CRISPR, which was invented in 2009, has been approved, and whether it causes long-term side effects is unknown.  

“We are aware that there are a number of individuals who are still a little bit hesitant. But overall, we’re excited mainly because it’s another option,” said Derek Robertson, the president of the Maryland Sickle Cell Disease Association, whose two sons have sickle cell disease.

“This is a potential life-transforming therapy,” Robertson said.

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Some Black patients may not trust this treatment, however.

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