Sickle Cell Disease and Gene Therapy Among African Americans: A Dilemma and Challenge

Sickle cell disease (SCD) is a debilitating genetic disorder of the red blood cells. In severe cases, it may lead to pain, hospitalization, stroke, heart disease, organ damage, acute chest syndrome caused by blockages in the lungs, and chronic complications which may affect the kidneys, lungs, joints, and eyes. In the United States (US), about 100,000 people have SCD, with 90% being African American. Although the US Food and Drug Administration's recently approved groundbreaking base editing gene therapies of Casgevy and Lyfgenia have been declared promising in treating SCD, uptake for the therapies has been low. Though the treatment of SCD through gene therapy has sparked some excitement in the African American community, it is also causing a dilemma and challenges. This paper documents the dilemma and challenges associated with gene therapy among the African American SCD community and what can be done to address them.