National Marrow Donor Program pushes for sign-ups Finding match proves difficult for minorities
The National Marrow Donor Program has a list of 30 million potential bone barrow donors. Yet, Sheldon Mba is still searching for a donor six years after he was diagnosed with a rare, life-threatening disorder in which the body destroys its own blood cells.
On top of fighting against the statistical probability of finding a stranger with a genetic makeup identical to his own, Mr. Mba faces challenges because of his race.
As a black person, he has a 66 percent chance of finding a match through Be The Match, the national bone marrow registry, while someone who is white has a 97 percent likelihood. Hispanics, American Indians and Asians also have a lower chance of finding a match.
Simply put, the registry lacks diversity, said Erica Sevilla, Be The Match’s newly appointed multicultural public strategist. Her job is to raise awareness and increase the number of minorities registered.
“We know that the best match for a patient is most likely to be somebody who is a genetic match, and a lot of times that’s based on your race or ethnicity,” she said.
But the makeup of the registry for minorities is tiny — 4 percent of the program’s potential donors are black and 7 percent are Hispanic.
“Those low numbers, the low participation of those races and ethnicity in the registry result in having lower outcomes and lower probability of finding a match,” Ms. Sevilla said.
Mr. Mba, 24, was diagnosed with aplastic anemia PNH when he was a high school senior in North Carolina. As a dancer, he was in the best shape of his life, but for months he suffered fatigue, body aches, stomach virus’s and flu-like symptoms.
While getting ready for a performing arts banquet, Mr. Mba collapsed.
“I could barely move … when I got to the hospital, I had barely any platelets, my white blood cells might as well have been non-existent, and my red blood cell count was so low, I was flushed out,” he said in a phone interview with The Washington Times. “There was no blood in my fingertips, I had white lips, I was really skinny, I was frail.”
He has been able to manage his disease with blood transfusions and medications, but his best chance of long-term survival is a bone marrow transplant from someone who shares an identical genetic foundation of his blood.
Neither his brother nor sister share enough DNA to be donors and his mother is only half a match.
“After no one in my immediate family was a match, that’s when we turned to Be The Match and we started taking our search national,” he said.
Since his diagnosis, Mr. Mba has hosted local registration events on his undergraduate and graduate campuses and done interviews in national newspapers and television morning shows. He’s working on his Master of Fine Arts degree in Theater at the University of Southern Mississippi, although his dancing has taken a backseat after having hip surgery from developing osteoporosis as a result of his illness.
“People see me active, they think ‘he must be doing OK, he must be doing well,’ and that’s not the case,” he said. “Honestly, I’m still in a life-threatening situation, but I’m in a better position than most patients that deal with the same illnesses that I deal with.”
Signing up for the registry requires swiping a cotton swab to the cheeks and filling out contact information. If a match occurs, a donor typically will be asked to donate his or her peripheral blood stem cells, or PBSC, undergoing a procedure that is similar to giving blood.
“You’ll go into the hospital, you’ll have blood extracted from one arm, it will be processed and the marrow will be extracted, the stem cells will be extracted and then your blood will be returned to your body in the other arm,” Ms. Sevilla explained.
About 25 percent of donors undergo the more surgically invasive bone marrow extraction from the hip.
Mr. Mba calls signing up for the registry “fighting a battle where there’s no way you could lose,” but also wants to encourage people to think about what it means to donate and be ready if the time comes.
“I really want people to know it’s a commitment, you’re committing to save a life,” he said. Those who are a match are under no obligation to donate.
That was the choice facing Lauren Ashley Ward, a 21-year-old student at the historically black Prairie View A&M University in Texas, who was spurred to join the registry after hearing about the lack of black registrants.
Within six months of signing up, Ms. Ward was notified that she matched with a 1-year-old boy suffering from an immunodeficiency disorder.
“Some people are on the registry for years, and they never match, and I matched at six months,” she said. “I was kind of like, this is why it felt so right to join the registry, because there’s obviously a reason, a purpose.”
The procedure required Ms. Ward to give herself twice-daily injections of a white blood cell-boosting medication for a week before donating. She spent a few hours in the hospital, with her blood taken from one arm, the marrow cells harvested, and then put back into her body through her other arm.
Ms. Ward said she was hesitant to tell her family that she was donating because of an ingrained mistrust in the black community toward hospitals and doctors, which she thinks keeps people off the registry in the first place.
“As far as family members … when they find out they’re still very shocked,” she said. “It’s kind of like … the relationship between the medical community and African-American community, there’s a lot of distrust.”
The black community suffers the highest rates of death and disease in the U.S.
“We can be upset, we can be angry about the past and the system that has been in place before us,” Ms. Ward said, “but if there’s an opportunity for us to make a change, even in the slightest, and we don’t do it, it’s our fault.”
Besides overcoming a fear of needles, Ms. Ward said the process went smoothly.
“Everyone was so nice and so pleasant, it was one of the most rewarding experiences that I’ve ever been able to do,” she said.
Ms. Ward wants to share her story in the hope that it inspires other people, especially black people, to donate.
“I would highly suggest anybody, especially African-Americans, to join the bone marrow registry because our health is our responsibility, at the end of the day.”
“I would highly suggest anybody, especially African-Americans, to join the bone marrow registry because our health is our responsibility, at the end of the day,” said college student Lauren Ashley Ward. Ms. Ward’s donation helped a 1-year-old child.