Sheldon Mba, an African-American junior at North Carolina Central University in Durham, N.C., knows firsthand how short life can be. He was diagnosed with blood cancer two years ago and is still trying to find a donor to save his life. Unfortunately, his match may not even know.
“We’re working on changing that, in terms of getting more involved, especially here in D.C., in the schools,” Grace Huber, community engagement representative for the National Bone Marrow Donor Program told the AFRO during a Be The Match bone marrow donor drive. “We’re trying to really advocate to all the schools from grade school, middle school, high school, [and] all the colleges and universities – where they turn a legal age of 18 and are able to join the registry. We’re really trying to capture that audience and emphasize a need for minorities on the registry.”
Be The Match manages a bone marrow registry for people diagnosed with life-threatening blood cancers and diseases such as leukemia and sickle cell anemia – a disease that effects one out of every 500 African-American births in the United States, according to the CDC.
Huber said Be The Match has over 11 million people on the registry. However, only 25 percent make up all the minority groups and only 8 percent, of that number, are African Americans.
Mba, 20, and other advocates visited Capitol Hill June 12, the program’s annual legislative day, meeting with members of Congress to share their personal stories and the importance of Be The Match initiative.
The organization goes to Capitol Hill every year to advocate for money for the program. The organization’s “funding levels have been cut over the past year or so [by] 8.2 percent,” said Chad Ramsey, director of legislative relations for Be The Match. The cut in funds resulted in 20 thousand fewer people on the registry and 800 fewer umbilical cord blood units.
Ramsey said bone marrow matches are more difficult for patients to find than if they were looking for a blood donor. The transplants are “more complex, because we’re testing you at a genetic level instead of blood typing, where there are only a few types,” he said. People diagnosed with blood cancers are “much more likely to find a match amongst someone of [their] own ancestral background,” he said.
According to Ramsey, yearly 12,000 in the United States need to find a match. Be The Match helped about 6,300 people last year, but only 7 percent of the donors were African American.
Liz Rea, spokesperson for Be The Match, said 70 percent of people who are in need of a transplant do not have a matching donor in their family.
Mba helps recruit donors to the program, while he waits for his match to step forward. He has been waiting for two years. “We’re still working on trying to really get the African-American community involved,” Mba said. “I’ve seen maybe a handful of African Americans step up and sign up … I’ve seen more Caucasians and other minorities, so we’re still trying to really dig into the African-American community.”
Cynthia Speckman, 50, a survivor of chronic myelogenous leukemia, recalled an African-American friend of her daughter who signed up to be a donor for her, but he wasn’t her match. “The donor matches on ethnics,” she said. “African Americans are incredibly difficult to match. It’s a harder target population for matching.”
For more information on becoming a donor visit BeTheMatch.org.