In many ways, the National Marrow Donor Program has been an enormous success. Since 1986, more than 5 million Americans have signed up as volunteer tissue donors with the organization, which has arranged more than 15,000 life-saving transplants. But, for some patients — namely those belonging to ethnic minority groups — the program is not working.
SIX-YEAR-OLD Nicole Howard is the young face of an urgent new campaign to save lives. Her father Rob, a Seattle police officer, remembers when the doctor told him and his wife Trish that Nicole had leukemia.
“She said the only cure for this is a bone marrow transplant,” says Howard.
But no one in Nicole’s family — including brother Conor — was a genetic match. So they turned to the registry of the National Marrow Donor Program, a database of millions of people in the United States who have agreed to be tissue donors if called upon.
But more than three-quarters of the donors are Caucasian. For people like Nicole, who belong to an ethnic minority, finding a match is often tough. Experts estimate that more than 4,000 people a year, mostly minorities, die from leukemia alone because they can’t find a matching donor.
According to Dr. Colleen Delaney, Nicole’s physician, “Tissue typing is inherited just like eye color and other ... genetic factors. So, if you’re a minority, your chances of finding a donor is best in someone else who is of the same ethnicity or the same background.”
There is not yet a donor match for Nicole. A drug called Gleevac keeps her alive for now, but doctors say it will eventually stop working.
“We don’t have a plan B. She’s on Gleevac now. We don’t know how long it’s going to last, and we need a plan B,” says Nicole’s mother Trish Howard.
But she adds, “One geneticist had estimated that we needed to recruit about 50,000 multi-racial people to the registry to have a probability of finding a match for Nicole.”
Nicole’s picture is now on brochures and displayed at events across the country to encourage more people, especially minorities, to become tissue donors.
Nicole’s brother wants to become a policeman like his dad. However, when asked about her dreams for the future, Nicole says she doesn’t want to be anything when she grows up.
But, like other children waiting for a matching bone marrow donation, she could be just about whatever she wants — if she gets the transplant she desperately needs.
For information about becoming a bone marrow donor, visit the National Marrow Donor Program’s Web site at or call 1-800-MARROW2.