Multiracial patients struggle to find donors for bone marrow transplants
Tuesday, June 1, 2010
The photographs are counterpoints, underscoring the Web site's stark message: that 4-year-old Devan Tatlow's life depends on finding a bone marrow donor by the end of July. One picture features Devan as a toddler, chortling as he hurtles across a green field. In the other he looks touchingly vulnerable as he sleeps in a room bristling with medical equipment at Georgetown University Hospital, where he is undergoing chemotherapy to treat a rare and aggressive cancer.
The MatchDevan site, launched in mid-May, is the centerpiece of an unusual international campaign that has attracted the support of Hollywood celebrities, Internet entrepreneurs and television reporters on behalf of the little boy who is battling a recurrence of acute promyelocytic leukemia. Doctors have told his parents, Washington journalists Indira Lakshmanan and Dermot Tatlow, that a transplant of bone marrow, stem cells or umbilical cord blood performed after 10 weeks of treatment offers the best hope for their only child; studies estimate the five-year survival rate after transplant to be about 70 percent. Without a transplant, which would replace his diseased marrow with healthy cells, options are limited.
But for Devan, the odds of finding a perfectly matched donor are not merely long, they are minuscule. The reason: He is one-quarter South Asian and three-quarters Caucasian, and there are only about 250,000 mixed-race donors -- about 3 percent -- listed in the National Marrow Donor Program's "Be the Match" registry of 8 million names. More than 74 percent of donors are white, while Asians account for 7 percent, as do blacks. Because matches are based on inherited tissue markers called human leukocyte antigens (HLAs), of which there are believed to be 5 million, some of them very rare, a donor is much more likely to come from the same racial or ethnic group as the recipient.
Recently doctors told Devan's parents that they have located umbilical cord blood donated anonymously that might be an acceptable, though not an optimal, match; confirmatory testing is underway, while the search for a better match continues.
"I still find it unbelievable that they couldn't find one match for him among 14 million donors," said Lakshmanan, referring to an additional 6 million donors in international registries that were also searched. "This is not just about Devan," she said, but reflects a severe shortage of donors for patients who are multiracial, one of the fastest-growing demographic groups in the United States.
"It's like trying to find a needle in a haystack," said Krissy Kobata, 27, the daughter of a white mother and a Japanese father who has been searching for a donor for two years. Kobata, who works for an advertising agency in Los Angeles, has myelodysplastic syndrome, a serious blood disorder that can be a precursor to aggressive leukemia. Doctors have told her that a transplant could cure her illness and should be performed before her condition deteriorates. Siblings have a 25 percent chance of being a match, but Kobata's brother was excluded because he wasn't a match; like 70 percent of those who need a transplant, there is no donor in her family.
Some patients are told that even if a bone marrow transplant offers the best chance of a cure, a match is unlikely and they should pursue other treatments.
That's what doctors told Jordan Culbreath, a star Princeton University football player from Falls Church, last October, after he was diagnosed with aplastic anemia, a potentially fatal bone marrow disorder. Culbreath, whose father is African American and whose mother is half white and half Japanese, has an older sister who was not a match. Unable to find a donor in time through the national registry, he underwent six months of drug treatment at the National Institutes of Health.
"Fortunately, I responded," said Culbreath, 22, who says he plans to return to Princeton in the fall and hopes to play football.
More mixed-race kids
"This is a growing challenge that we face as the world expands and there are more mixed-race kids," said San Francisco surgeon Willis Navarro, who is medical director of transplant services for the National Marrow Donor Program. Navarro understands the problem firsthand: His father is Mexican American and his mother's ancestry is Northern European. In 2000, nearly 7 million Americans said they were multiracial; according to census projections, that number has increased by about 25 percent.
The donor shortage affects not only multiracial patients but also African Americans, who are more a mixture of races and "face the biggest challenge because of HLA diversity" than other groups, Navarro said. In rare cases, he said, matches do occur across entirely different ethnic groups -- such as an Asian woman matching as a donor for an African American man -- if both happen to inherit the same HLA markers from each parent; at least six are tested and four must match. Matching is crucial because it reduces complications, particularly rejection of the new bone marrow.
Once considered a last-ditch treatment, bone marrow transplants increasingly are being used with success to treat a growing variety of life-threatening disorders, including sickle cell anemia and many cancers, and are recommended at much earlier stages and at younger ages, when patients tend to fare better. But the procedure can be harrowing and still carries significant risks, including death. Patients typically undergo high-dose chemotherapy and sometimes radiation to obliterate their immune systems and, it is hoped, any lingering cancer cells. They then receive intravenous infusions of a donor's cells that are supposed to take root and produce healthy new marrow.
Improvements in treatment have resulted in better outcomes, Navarro said. The one-year survival rate following a transplant involving an unrelated donor approaches 70 percent, up from about 60 percent a decade ago. Annually about 18,000 Americans launch a search for an unrelated donor through the "Be the Match" registry, and about 4,800 undergo a transplant, which can cost $250,000.
The expanded use of transplants has highlighted the pressing need for minority and mixed-race donors, said Mary Halet, a director of donor recruitment for the NMDP. Recruiters are using Facebook and other social-networking sites and have forged partnerships with groups including historically black colleges and universities, the Icla da Silva Foundation, which recruits Hispanic donors, and Asians for Miracle Marrow Matches.
"High-profile patients help personalize and create that emotional connection," Halet said. Recent drives on behalf of Jennifer Jones Austin, a prominent African American activist in New York who underwent a transplant several months ago, registered more than 11,000 new potential donors, most of them minorities.
Although more than 48,000 Americans register as potential donors each month, myths about donation abound. One of the most intractable was graphically portrayed by Will Smith in his 2008 movie "Seven Pounds," when he writhes in agony while giving bone marrow to save a boy's life. There are others: that donors must pay, that the process can transmit cancer, and that pieces of bone are extracted.
"None of these could be further from the truth," Halet said.
Birth of a campaign
When they learned in early May that Devan's cancer had returned more than a year after he finished treatment, his anguished parents contacted their large network of family and friends around the world for help. They had been told earlier that because of Devan's mixed ethnicity, finding a donor would be very difficult.
Within days the MatchDevan site went up, which attracted an estimated 80,000 visitors in 174 countries the first week, according to Robert Kenny, a media consultant based in London who spearheaded the effort.
Friends also arranged more than a dozen bone marrow drives in the United States and United Kingdom. The campaign attracted the attention of celebrities Ashton Kutcher and Kim Kardashian; Craig Newmark, founder of Craigslist; and television reporters Ann Curry and Andrea Mitchell, who spread Devan's story to their millions of Twitter followers. More than 560 people have registered as donors, according to registry officials.
Although campaigns almost never find a suitable donor for the intended recipient -- there is no evidence Devan's helped him -- such efforts have a beneficial ripple effect. "What they're doing is great," Navarro said. "It will certainly help the universe of patients." Devan's parents say that is one of their primary goals. Once a possible cord-blood match was located, photos of other multiracial patients searching for matches, among them Kobata, were posted on the site, and supporters were urged to register as donors.
No such tools existed in 1991, when 2-month-old Stephanie Rudat of Anaheim, Calif., received a diagnosis of acute myelogenous leukemia. After a transplant involving her own bone marrow failed, a doctor told her parents there was nothing more to do and advised them to take their baby home and "let nature take its course." The odds of a second transplant from another person seemed vanishingly small. Stephanie's mother is from Pakistan, her father is Caucasian, and neither they nor her older sister was a match. At the time, there were about 500,000 donors in the U.S. registry.
"You cannot imagine the sickness level," Farhat Rudat recalled. She insisted on taking her daughter to the Fred Hutchinson Cancer Research Center in Seattle, which pioneered bone marrow transplantation. In April 1992, when she received a call saying a donor had been found, Rudat said, "I put down the phone and screamed."
The donor, she learned a year later when they first met, was Bill Atkinson, a former Navy SEAL and career officer who had given marrow in memory of his brother who died of leukemia. It was a close but not perfect match, and Stephanie underwent the transplant when she was 16 months old, then spent months in the hospital.
Now 19, she has been cancer-free ever since. She recently finished her freshman year at California State University at Fullerton.
Did Rudat ever despair of finding a donor?
"I am a very strong-minded person," she said. "I have the kind of mentality that nothing is impossible."