Registry Diversity: Why It Matters

Why we need to work on making the registry more diverse, chances of finding a matching donor for ethnic groups and how you can help.

U.S. Registry Diversity: Why It Matters

When you’re feeling sick do you go for a bowl of Chicken Noodle soup or Pho (or Caldo de Pollo)? Borscht or maybe Matzo Ball soup? Your answer most likely depends on your cultural heritage and ethnicity, but your ethnicity plays a far greater role than just deciding your comfort food. In fact, your ethnicity could be the key to saving someone’s life!

When joining the bone marrow registry as a potential bone marrow donor there are two extremely important factors that influence your ability to match and donate to a patient in need. The first is age, as research has shown that in general younger donors provide the greatest chance for transplant success. The second is ethnicity, as some HLA types are more prevalent among specific ethnic groups and donors and recipients must share nearly identical genes that regulate certain immune cells. These genes evolved long ago in direct response to the diseases and threats to the immune system that people faced in certain geographical locations and without the genetic similarity between a donor and a patient, the new white blood cells will attack the host body. In an organ transplant, the body can reject the organ, but with marrow, the new immune system can reject the whole body.

In the current breakdown of the registry all minority registrants combined only make up 25% of the total donor population, with African Americans facing a particular difficult time due to lack of representation. For example, currently only 66% of African American patients will even be able to find a donor, the lowest percentage of all major minority groups, compared to 97% of patients with Caucasian ancestry. Additionally, people who identify as mixed race represent one of the fastest growing segments of the population and will soon likely face the steepest odds in finding a matching donor.

The problem we face is simple: ethnic minorities are severely underrepresented on the registry, meaning that patients from those ethnic groups face much steeper odds of finding a matching donor. The solution is also simple: we need to increase awareness of the need for diverse donors, while actively increasing our outreach to these communities. With your help we can change the odds for all patients, regardless of ethnicity; one new donor at a time.