More than Skin Deep

African-Americans Less Likely to Find Bone Marrow Donors

Scott Murray, a powerfully built black man in a Buckeyes T-shirt, paces like an expectant father in the delivery room. Outside, it's a warm, breezy Saturday afternoon, but here, among the emptied storefronts of the Euclid Square Mall, it feels more like a mausoleum: cool, stale, timeless. Scott arranged for the American Red Cross to be here for four hours today to perform blood tests on volunteer bone marrow donors, and he knows that any one of them could hold the key to restoring his wife, Patricia, back to good health. He busies himself setting up metal chairs and dragging particle-board tables into place as a nurse in pink and white unpacks gauze, latex gloves, safety needles, Band-Aids...No matter how much clutter they create, the cavernous room still feels empty.

"Do you need me to do anything else?" Scott asks Haydeana "Nana" Gaviria, a Red Cross recruiter who helped organize the event. "No," she says. "We just need the donors to come in."

Getting donors to come in has been a constant struggle for the National Marrow Donor Program, but the problem has been most pronounced with minorities. Blacks represent just 8 percent of the 4.4 million donors on the National Marrow Donor Program's Registry, though they make up 12.3 percent of the country's general population. The disparity is alarming because in 90 percent of bone marrow transplant cases, patients find a suitable donor among their own race. Consequently, white leukemia patients have a much easier time of finding a life-saving bone marrow donor than do black patients in the same situation.

Isaac A. Fordjour, the donor program's former national manager for African American outreach and recruitment, says white patients have a 70 percent chance of finding a suitable donor, while for black patients, it's estimated to be between 30 and 40 percent. "We're not proud of those numbers," he says, "we're only proud that they're getting better."

The numbers are getting bettter - in 1988, less than 1,000 blacks were enrolled. Back then, black patients had only a 4 percent chance of finding at least one perfect donor, Fordjour says. Buoyed by greater minority enrollment, the number of transplants performed on minority patients has nearly tripled since 1995.

But that's of little consolation to patients like Patricia, who languish for lack of a suitable donor.

Patricia, a sleepy-eyed mother whose joints are gnarled from lupus, suffers from aplastic anemia, a rare disorder resulting from an unexplained failure of the bone marrow to produce blood cells. The condition saps her energy and leaves her vulnerable to opportunistic infections. If she doesn't get a transplant soon, her doctor says, one of those infections will likely kill her.

Scott dreams that a bone marrow donor could hold the panacea his wife needs, but today, the prospects don't look so good. Several black men and women stroll halfway down the hallway only to veer off course and head into the nearby restrooms. A woman pushing an elderly man in a wheelchair offers to be a marrow donor, but she's ruled ineligible when she mentions she has diabetes.

As the afternoon draws to a close, only seven people have joined the registry "Gotta talk to them about doing it again," Scott mutters to himself. "Keep pluggin' away."

Bone marrow donation doesn't exactly sell itself. It starts with a needle prick to draw blood for DNA typing. Potential donors can go years without being called on, but when they are, the process is much more inconvenient than that of simply giving blood. Marrow donors are anesthetized and then undergo a 45- to 90-minute procedure during which a surgical needle is inserted into the back of their pelvic bone to extract marrow. The procedure leaves donors sore for anywhere from one day to two weeks, and may require them to use vacation time at work - all this just to help a stranger.

"What you're asking someone to do is almost miraculous; it has no inherent benefit to the donor," says Amy Burger, a spokeswoman for the marrow program. "But," she adds, "they can give someone the gift of life."

Recruiting minority donors presents challenges of its own, experts say. Some poor blacks are suspicious of the medical establishment, and with good reason - during the infamous Tuskegee study, black sharecroppers were denied treatment for syphilis so scientists could determine the disease's long-term effects on the human body. Then there's the panic surrounding HIV; Nana says some African Americans have nervously asked her if the Red Cross reuses needles. (It doesn't, of course.)

But more often than not, Fordjour says, African Americans simply don't know about the bone marrow registry. Recognizing this, Congress passed the Transplant Amendments Act of 1990, which directed marrow recruiters to "ensure that the pool of potential donors that form the Registry is ethnically diverse" so that minorities' chances of finding suitable donors would be "comparable" to that of whites.

At about that time, the National Marrow Donor Program received a $4.5 million grant from the U.S. Navy, opening the door for public and private funding that "revolutionized recruitment," says Burger, by helping to pay for minorities to get tissue typing, which normally costs $83 per person. Within three years, the marrow program launched "African Americans Uniting for Life," a grass roots campaign to spur black enrollment. Soon after came similar campaigns targeting Hispanics, Asians and Native Americans. The result has been a precipitous increase in minority enrollment - from just 18,525 in 1990 to well over 1 million in 2001.

But it's still not enough. During an April 1998 Capitol Hill hearing on the bone marrow donor registry, Senator Mike DeWine, who has made organ donation one of his signature issues, noted that 23 percent, or 700,000, of the people on the registry at the time were minorities. "Now, to a white person," he said, "they'd look at that and say, 'Well, gee, that sounds OK, I mean, that doesn't sound like that's a problem.'" He asked Dr. Clive Callender, the founder of the National Minority Organ Tissue Transplant Education Program, to explain in simple terms why the pool isn't big enough.

Callender said that people of recent African descent have a greater genetic diversity in tissue typing than other ethnic groups. (An organism's greatest genetic diversity is usually found where it originates, and scientists have traced mankind's migration back to Africa.) On top of that, simple math dictates that being a minority means there's a smaller pool of donors from which to draw. "I hate to say this," Callender told DeWine, "but we need to have probably 10 times the number we have now."

The National Marrow Donor Program has found at least one person who, at first blush, may be able to save Patricia Murray's life. The potential donor would have to go through additional testing to see if he or she is really a suitable match.

Unfortunately, the potential donor isn't available for testing right now. It may be that the person is out of the country or has had unprotected sex and must wait to make sure he or she didn't contract a blood-borne virus, such as HIV. Or it could be that the person signed up to be a donor to benefit a close friend and has since decided he or she isn't willing to go through the hassle of bone marrow donation to benefit a stranger. Karen Sands, the bone marrow transplant coordinator at the Cleveland Clinic, where Patricia is being treated, has no way of knowing. The veil of anonymity cloaks the donors' circumstances to protect their confidentiality. The soonest Sands can ask again is October, and even then there's no guarantee the person will turn out to be a willing and suitable donor. A white person in Patricia's situation would not be nearly so dependent on the whims of a solitary volunteer; 50 percent of whites find more than 10 potential matches on the Registry, compared to just 10 percent of blacks.

Until October, all Patricia can do is wait and hope that a new suitable donor will join the rolls. While she waits, she goes to the Clinic twice a week for the transfusions of hemoglobin and platelets that keep her alive. During a recent visit, a nurse hung up a bag of platelets the color of apricots and plugged it into the tube that hangs from Patricia's chest. The 12 o'clock news came on with a story about a man convicted of murdering his wife. Pat struggled to recline in her teal hospital chair, yawned and pulled a white blanket up to her neck. Outside, the sky darkened with an approaching storm. Patricia's cell phone rang. It was her son, Jasean. He's frightened of thunder and wanted to know when his mommy was coming home. Patricia assured him she would be home soon. "It won't rain too hard until I get there."