Of the 55,000 transplants that were facilitated since Be The Match Registry launched 25 years ago, less than 5 percent of those transplants (roughly 2,500) were for African-American patients. Currently the bone marrow registry consists of 70 percent Caucasian donors with minority groups representing 30 percent.
“Whenever someone like Robin Roberts comes along, it’s a gift for us. People really ‘get it’ because they understand who exactly they’re helping,” Fox says. “Every day we’re always asking people to donate, give blood and register, but it doesn’t resonate with people unless it’s someone they identify with.”
When Roberts announced her diagnosis in June, more than 16,000 people registered to be bone marrow donors that month, which is 7,000 more than the registry would normally receive in that period. While the sudden spike in numbers seems promising, the overall percentage of African-American donors remains at nearly the same rate, according to Fox.
Twelve thousand people every year in the U.S. seek bone marrow donors from outside their family; however, only about half of them end up receiving a bone marrow transplant from the registry, according to the most recent data from 2011. There were no statistics available on how many of those transplant recipients were African-American.
One related case that recently shook the African-American community was the story of 11-year-old Broadway star Shannah Tavarez who played young Nala in the musical The Lion King. The budding musical star died in 2010 of acute myeloid leukemia after failing to find a match in the registry. Being both African-American and Hispanic, Tavarez had an even harder time locating a match, because there are very few donors of mixed ancestry registered in the system.
Fox says there are a host of conditions leading to the fact that minorities, especially African-Americans, are unlikely to donate to the bone marrow registry. These include the historical mistrust of the medical system, the disparities of medical access between whites and blacks, and even the fear of the donating process itself.
But Fox clarifies that donating is a very simple and relatively painless process. To register as a bone marrow donor, a person simply swabs the inside of his or her cheek to provide the DNA that will be used to identify a bone marrow match. Furthermore, donating bone marrow in the majority of cases only requires a process similar to donating blood.
“It’s not a painful process to donate bone marrow anymore. A lot of people are afraid of needles… It used to involve going into the hip bone with a large needle,” Fox explains. “Most of the time now, they will give [a person] injections to release bone marrow into the bloodstream and then they will simply draw blood. It’s very similar to what you would do for a blood donation.”
He further explains that the blood is then transferred to a machine that extracts the bone marrow from the blood. Most donors return to their daily routines on the same day, yet some may require one to two days to recover fully because of the amount of blood drawn. This is far less than the week-long recovery time the procedure has previously required.
Roberts’ public journey fighting leukemia has allowed her to campaign for more African-American bone-marrow donors to register, but Fox says more work needs to be done to increase diversity within the bone marrow registry.
“People just need to take a little time out of their schedule to put a q-tip in their mouths,” Fox says.
And that simple q-tip swab could save someone’s life.
To register for the bone marrow registry on Be the Match, click here.
Follow Brittany Tom on Twitter @brittanyrtom