August is National Minority Donor Awareness Month, a time dedicated to promoting organ and tissue donation and bridging the gaps between donations and need in minority populations.
Almost 60 percent of people on the U.S. transplant waiting list come from multicultural communities, including African American, Hispanic, Asian/Pacific Islander, and Native American communities. However, the number of donors from those communities is much lower than the number from white communities.
According to Jeffrey Cooper, MD, chief of the Division of Transplant Surgery at BMC, there are six main reasons we see a gap between donors and need in these communities:
- Genetics: A gene called APOL1 can cause higher rates of kidney disease in people of African descent than other ethnicities. This means that African Americans are both more likely to need a kidney and are less likely to be able to donate one due to their own health.
- Health and lifestyle: For a number of reasons, some minority communities have higher rates of diabetes, high blood pressure, and obesity. This means that finding people healthy enough to donate can be harder.
- Distrust towards the medical system: Some groups have been traditionally left out of the health care system and may distrust it as a result. This makes talking to them about care harder. Their concerns – whether about the lack of diversity in clinical trials or other factors from past experiences – are valid, and need to be addressed before donation rates can improve.
- Diversity in healthcare: Many parts of the health care field lack diversity and minority representation. This can be a barrier to encouraging donation. It’s important for patients to see themselves in a care team, whether that’s speaking the same language or being part of the same community.
- Financial: Medical insurance covers the cost of kidney donation, but donating can be expensive. Diet and health changes can be needed to prepare for the donation and to stay healthy after. Donors need a long post-transplant recovery time but that may not be possible for people who live paycheck to paycheck, work hourly jobs, or don’t have jobs that allow for extended time off.
- Cultural: Some religions emphasize keeping the body intact, while others don’t allow organ donation at all. Some cultures made avoid talking about death. Others may not want to ask for help or have negative views towards being helped by adult children or other family members.
Transplants are done between people with different ethnicities, but the chance of longer-term survival can be higher if the donor and recipient share similar genetic backgrounds. Therefore, the kidney transplant team at BMC is working to address donation gaps. This will help improve outcomes and shorten the 3-5 years patients spend on average waiting for a kidney.
You can find more information on becoming a kidney donor here.