African Americans fundamental disadvantage in gaining access to HSCTs due Essay Example

due to their genetic diversity, something that cannot be altered by the creation of policy or programs. Not only is it difficult for African Americans to find donor matches for HSCTs due to the complexity of HLA subtypes, but African Americans are also heavily underrepresented in bone marrow donor registries. The generalization of African American institutional skepticism is the main cause of the underespresetation due to the mistreatment of black minority groups throughout US history, especially in the realm of medicine.

The Tuskegee Syphilis Experiment, conducted from 1932 to 1972, was a racist longitudinal study of untreated Syphilis in black men who were not offered treatment when Penicillin was discovered to cure the disease. They were ultimately coerced into participating in the study by the US Public Health Service, who promised compensation for participation in the study through the form of a paid burial expenses, something the black men may not have been able to afford otherwise. The unethical implications of the study lead to pertinent backlash which has heavily influenced “African-American beliefs and attitudes towards the medical and scientific establishment”. Unfortunately, the Tuskegee Study was not the only institutionalized medical abuse of African Americans patients in the field of research medicine. Henrietta Lacks was an African American woman who was diagnosed with cervical cancer before she died in 1951 at the age of 31. Her cancerous cervical cells were cultured into the first immortal cell line, the HeLa cell line, which greatly contributed to cancer and regenerative medicine research. However, Henrietta Lacks’ cells were taken and cultured without her or her family’s informed consent.

This is merely another example of how American medical practices have marginalized

the rights of the African Americans, leading to their widespread skepticism of institutional medical practices. This fundamental distrust in the American medical system may be a large implication of African American unwillingness to contribute to the bone marrow registry. As reported by the Maryland Department of Health, African Americans make up at least 13% of the American population, but only contribute to 8% of the National Bone Marrow Registry. This goes to show that there is a fundamental lack of representation of African Americans in the registry, leading only to greater difficulties for African American patients to find matches for their diverse HLA subtypes, creating an inequity in access to this regenerative treatment. Lastly, it must be acknowledged that a lower average socioeconomic status is generally associated with African Americans due to the social and political factors related to the US’s history with institutionalized racism. This inherent socio-economic impediment often hinders African Americans from donating due to implications of the procedure, such as taking time off of work and paying for travel expenses to the donation site.

According to a study conducted by the Medical University of South Carolina surveying African Americans’ perspective on becoming registered bone marrow donors, respondents who contested “cost or lack of opportunity” as reasons for not donating were 1.6 times more likely to register than individuals who listed “fear of pain or inconvenience”. Thus, it is apparent that many African Americans would donate if their income allowed them to cover the large expenses associated with being registered donors. In addition, many African Americans have also emphasized that they are not solicited frequently and would strongly consider registering if they were given

more opportunities. Thus, it can be assumed that there are little to no donation sites in highly African-American populated neighborhoods or that there exists a fundamental lack of education about becoming a registered bone marrow donor. Inevitably, African Americans facing obstacles in becoming donors leads to a lower representation of African-American HLA subtypes, lessening the chances of finding an exact donor match in the registry. Thus, this maintains inequities in access to the treatment, as African Americans consistently face a disadvantage.

As has been illustrated, the main cause of African American inaccessibility to hematopoietic stem cell transplants encircles the difficulty associated with finding exact matches in the bone marrow registries. Possible policy surrounding the correction of this inequity in access to bone marrow transplants would entail increasing representation of African Americans in the national bone marrow banks to ensure a diversity of HLA subtypes. One of the most feasible strategies towards increasing this representation should aim at decreasing the cost surrounding bone marrow donation such as time taken off of work or expenses related to the donor’s travel to the recipient's hospital for the procedure. According to the National Marrow Donor Program, many insurance companies will cover the cost of the patient’s transplant procedure, but not the cost associated with finding a donor or matchable cord blood unit. Ideally, insurance companies of the HSCT recipient should be forced to cover the entirety of the donor’s expenses including preliminary blood tests, procedural costs, and all follow-up appointments. In addition, this policy implementation should be advertised to African-American communities in churches, schools, or community centers to ensure possible donors are well-informed they are unaccountable for costs of the

process, which may incentivize many to register. Eliminating certain barriers, including the hefty cost of donation, may be a way to encourage African-American HSC donation, leading to an increased likelihood of finding exact matches in the donor pool. Such modifications in the American healthcare system can steer a path for decreasing inequities in access to medical treatments among minority groups and can integrate healthcare as a fundamental right rather than a privilege reserved only to some.