By Althea A. Fung
More than 100,000 Americans find out each year that they have a life-threatening disease, like leukemia, requiring a bone marrow transplant. About 30 percent of the patients in need of a transplant find a match within their families.
But the thousands of patients who can’t find donors within their families, like Jennifer Jones Austin of Bedford-Stuyvesant, must rely on the kindness of strangers who register to donate bone marrow. And even then it can be tough.
More than 8 million people are registered to donate, according to the National Marrow Donor Program—Be the Match, a federally financed program that facilitates transplants worldwide. Finding a match within the registry isn’t easy, however. “Each person has a unique genetic type made up of different antigens,” said the clinical director the bone marrow and stem transplant program at New York Presbyterian Hospital, Dr. Tsiporah Shore. “We need to find a donor match for those antigens. Within a family, there is a one in four chance you’ll have a sibling that matches. Outside the family it depends on how unique your type is.”
Despite these difficulties, the donor program says there is a 60 percent to 88 percent chance of finding at least one match. However, your odds depend on your race or ethnicity. Approximately 74 percent of the registered donors are white, while Latinos make up 10 percent and African-Americans make up only 7 percent of the registry. The odds of an African-American or Latino finding a match is half that of a Caucasian.
“Within certain ethnic groups there is commonality,” Shore said. “Like within the Amish. They are married within themselves. It is much more likely for someone in that community to find a match with their group than someone who just lives in Brooklyn. There are gene pools passed down through Latinos and African-Americans. That’s why it’s important to find someone within your own ethnic groups.”
Jones Austin, a 41-year-old married mother of two, received her leukemia diagnosis in September 2009. After her family was tested, to no avail, Jones Austin turned to her neighborhood to find someone who is a match. She had help.
Every day, organizations like Icla da Silva Foundation host registry drives to get more blacks and Latinos registered to donate bone marrow. On Feb. 5 and 6, Icla da Silva and the Bedford-Stuyvesant Restoration Plaza held a bone marrow registry drive for Jennifer Jones Austin.
About 150 people turned up to have their cheeks swabbed. Jenny Coste-Ulanga, a recruitment specialist with Icla da Silva Foundation, described the turnout as good. But registry drives across the country over several months have turned up no matches for Jones Austin.
Jones Austin’s only other option is cord blood transplant. Cord blood is the blood that remains in the placenta and in the attached umbilical cord after childbirth. With cord blood a partial match is acceptable, and most African-Americans who choose cord blood find a suitable cord blood unit. But according to the National Bone Marrow Donor Program, some doctors opt to not use cord blood because it is a newer treatment and there is little information about patients’ long-term results.
Leaders of such organizations as Preserve Our Legacy, a non-profit that provides health information to minority communities, say that more people would register if information were more available about the issue. Most people find out about registry drives through word-of-mouth, said Shana Melius, co-founder of Preserve Our Legacy, but this method isn’t effective in educating black people blacks and Latinos on the need for donors or the methods of donation.
Telling the story of Jaden Hilton, a 3-year-old from New Jersey who died of leukemia in 2007the organization went to the New Jersey legislature requesting a law that requires the Department of Health to establish programs to educate citizens of their bone marrow donation options.
Without some help from the government, advocates say, people like Jones Austin and organizations that help people with bone marrow disorders will have to rely on word of mouth and passersby, the kindness of strangers, to save a life.
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