Shanice Murphy was only five years old when she was diagnosed with aplastic anemia, a disease that occurs when a person’s bone marrow stops producing new blood cells. The lack of white blood cells increases susceptibility to infection and the lack of platelets means a simple bump or bruise can cause unstoppable bleeding. The disease is considered idiopathic, meaning doctors do not know how it occurs. The only known cure is a bone marrow transplant.
Bone marrow transplants are most effective when a sibling is the donor. Siblings have a one in four chance of being a tissue-type match. Tissue type is determined through a test of a particular protein, called human leukocyte andogen, which is located on a person’s white blood cells. However, only 30 percent of patients find a donor this way. The remaining 70 percent must find a donor through the National Marrow Donor Program, a 16-year-old nonprofit organization that maintains a database of five million people who have signed up as potential donors. A bone marrow donation has the highest rate of success if the donor and the recipient are of similar racial heritage.
However, Shanice, who lived in Flatbush, Brooklyn, and dreamed of becoming a firefighter, was of mixed African-American, Hispanic, Jewish and Native American background— and minority bone-marrow donors are few and far between, comprising just 8 percent of the donors on the National Marrow Donor Program’s registry.
Laura Tormey, a bone marrow transplant coordinator at Upstate Medical Center in Syracuse, N.Y, says that while minorities are not disproportionately affected by most diseases requiring bone marrow transplants, “they don’t have the same selection of donors as whites” and therefore less of a chance of surviving. Someone of mixed background like Shanice has an even harder time finding a donor because multiracial people have very specialized tissue types.
“Education and awareness” are the biggest obstacles in recruiting more minority donors, explains Helen Ng, a spokesperson for the National Marrow Donor Program, which is headquartered in Minneapolis.
“We are aware of the need in the community,” she says. “We are making great strides in getting minorities to join the registry and in informing them.”
Shanice’s neighborhood kicked into high gear for the little girl. Targeting neighborhoods, Tormey says, is one of the best ways to educate people of color about the need for more donors: “If there is a patient who needs a donor and doesn’t have a sibling match, often the community will have a bone marrow drive in that patient’s honor.” Indeed, Flatbush residents flocked to blood drives held at Brooklyn hospitals and colleges as Shanice received weekly platelet transfusions at Brookdale Medical Center in Brooklyn to stay alive.
When Jennifer Graham of Brooklyn, now 33, read an article about Shanice’s plight, she knew she wanted to help. “I saw this thing, and I guess I never realized that African-Americans were not going on the list,” she says. Her friends were skeptical.
“I had this conversation with coworkers, and they said they’d never do it. But a couple of days of me being in pain is worth someone’s life.” Graham went to Brookdale Medical Center and had her blood drawn. Her blood was tested for several infectious diseases, including HIV, and she was asked several questions similar to those that blood donors are asked— about traveling, sexual history, and tattoos, among other topics.
The reluctance Graham encountered from her coworkers is not unusual among minorities, says Tormey, who regularly sees people come in for testing with no knowledge of the procedure. “Some people are afraid of the needle used to draw blood. They’re afraid it will give them AIDS. We use sterile needles. They don’t know what the procedure is and assume it will be painful. It’s basically fear of the unknown,” Tormey explains. Graham says she talked to people who thought they removed an entire bone from the donor’s body.
Ng says that many patients fear the pain, which she compares to falling on ice. “When you slip on an icy sidewalk, it’s kind of achy but you get up and walk again, right? Donors have reported feeling tired, but they get back to a usual routine.” Marrow is typically removed from the back of the donor’s pelvic bone in a 90-minute surgical procedure.
Another procedure, in use for about 10 years, is peripheral blood stem cell donation. In this procedure, the donor receives injections of a stimulant called neupogen four days prior to donation. Neupogen stimulates bone marrow stem cells, which produce the components of healthy blood, to emerge from inside the bones into the bloodstream. The donor is then connected to two IVs, one that removes the blood from the body and separates out the blood stem cells, and another that puts the blood back into the donor’s body immediately. This procedure takes about four hours and, notes Tormey, it is much less traumatic to the donor.
Tormey says that with either procedure, the discomfort to the donor is trivial compared to what the recipient must endure. “This is simply giving blood,” she says. “There’s absolutely no risk to the donor. But it can be very complicated and risky for the sick patient.”
A bone marrow transplant recipient is given high doses of immunosuppressants for several weeks prior to the procedure, making them susceptible to outside infection. They remain on the immunosuppressants, as well as a host of antibacterial and antiviral drugs and steroids, for at least 100 days after the transplant, says Tormey.
Graham says she researched the procedure on her own. “They basically didn’t tell me too much, so I kind of looked up the procedure on my own to see what it was like.”
Though Graham was not a match for Shanice Murphy, she remains on the National Marrow Donor Registry, and will remain there until her 61st birthday. She can be called upon to donate marrow at any time.
Shanice Murphy finally received a bone marrow transplant from a 23-year-old African-American man in April 2002, three years after her diagnosis. However, her body rejected the transplant and died on August 10, 2002. Graham says this unhappy outcome did not affect her resolve to be a donor.
“I don’t really do a lot as far as contributing to the world, and this was just a small way,” she says. “I hope someone does call me because it would give more meaning to my life, helping someone like that. I can’t imagine the feeling of someone being able to be saved because of something small I did.”
Lela Moore is a writer based in Brooklyn.