Although several blood cancers-leukemias and some lymphomas-can only be cured through a stem cell/bone marrow transplant, Black people who need a transplant often can't find a matched donor who is not a relative. According to the National Marrow Donor Program, 23% of Black people are likely to find a donor match compared with 77% of White people. As a bone marrow transplant nurse and coordinator for over 17 years, I've long asked myself why this is.
One of the main reasons is that there are proportionally fewer Black donors in the registry than donors of other ethnicities. According to the Health Resources and Services Administration, there are approximately 600,000 Black people in the registry compared to nearly 4 million White people. I have asked Black people in the community during bone marrow drives why they have not joined the registry. Two responses I have often received are: "I've heard that it hurts" and "I don't trust the health care system with my body."
Another reason is the mixture of ethnicities or genetic makeup Black people may have. During slavery, when Black people were separated from their families and sold or traded, the births of mixed Black and White individuals would often result. These mixed ethnicities are not categorized as a selection in the registry, which can deter people of mixed ethnicities from joining.
The relative paucity of Black donors in the registry has its roots in historical abuses that left many Black people distrustful of health care. As a Black woman in the United States, I've seen and experienced challenges that help me understand why there are fewer Black bone marrow donors. Notorious historical cases have contributed to the Black community's hesitancy to volunteer their bodies for clinical information purposes. One case was the Tuskegee Study of Untreated Syphilis in the Negro Male, which began in 1932, included 600 Black men, and continued without informed consent until 1972; the men in the study were never offered treatment for syphilis despite treatment beoming available in the early 1940s. Another example is the much-publicized case of Henrietta Lacks, a cervical cancer patient in the 1950s whose cells were kept for valuable cancer research without informed consent.
Distrust from these and other historical episodes persists and is only reinforced by continuing inequities in the health care system for Black people in areas such as obstetric care and pain management, to mention just two. All of this has made the Black community cautious about voluntary participation in studies or about medications with uncertain side effects. Trust in the health care system needs to be reestablished for members of the Black community to volunteer as stem cell/bone marrow donors. Black people need to feel that they are respected and safe.
Multiple states have initiatives to encourage the Black community to participate in clinical trials and interventions to improve health, whether through vaccination against COVID-19 or other means. The Cleveland Clinic has an annual Minority Men's Health Fair that addresses health disparities with free screenings. Bone marrow donor drives could be included in these initiatives, with a focus on reaching Black people and educating them on becoming a donor. Members of the Black community may be more likely to trust health care providers who "look like" them and who can more easily relate to the injustices, mistreatments, and negative care of the past. Increased education on the bone marrow registry by those who can develop a rapport with the Black community would both benefit the registry and increase the likelihood of matched donors for lifesaving bone marrow transplants.