Why Race Matters

The NMDP and DKMS are doing a great job in their efforts to diversify the registry. They have a lot of resources but also have a larger scope when it comes to matching donors to patients. They have both stepped up efforts to register more of every ethnic group which includes some African American specific campaigns. But, due to some of the issues below, there is an obvious need for additional recruiting agencies and strategies for the African American population.

African Americans are simply not aware of the need to join the registry. Most do not even know it exists. We need to bring more attention to this crisis. Today there is no nationwide organization whose sole purpose is to bring awareness of the need to join the registry to the African American community. There are several small active and non-active organizations across the countries that do this. If we continue at this pace it may take several decades to build the registry to where it needs to be. Joining the registry is so simple today that we should already have donors ready for at least 90% of all patients who need one. The need for a better more efficient way to recruit African Americans is apparent.

Even as we make are community aware of the need for donors there are other obstacle we must face. African Americans are difficult to convince that they are needed to join and are harder to locate and convince they need to donate once matched.

Several studies and reports including those done by the University of Pittsburgh, University of Illinois, and Duke University Medical Center, have concluded what most African Americans already know. There is a deep mistrust of the Medical system among African Americans. Because of past abuses including the infamous “Tuskegee Experiment” we have learned through the years not to trust the system. This culture of mistrust forced us to deal with health issues internally using the best resources we had (family and the church community). But that culture which once protected us from harms way now threatens our ability to receive proper health care and in this case, a life saving marrow transplant.

African Americans have a greater overall genetic diversity also known as genetic admixture than other populations. According to population researchers at Penn State University the average African American is 17-18% white. This conclusion came from a study using DNA samples from groups of African Americans throughout the US, West Africa, and Europe. Although not as large, most Black Americans are said to have Native American ancestry as well. This admixture from three continents makes it more difficult to match donors and patients. This is because it will take more possible donors than the norm to find the same number of matches as other population groups. For example ten African American patients will have a lower success rate finding matches in a pool of African American donors than ten Nigerian patients would if were to search a Nigerian pool of donors of the same size.