Bone Marrow Testing Conducted for Sharon Steiff, YI Member

Marrow-match hunters hope for Brookline turnout

By Katherine Lutz, Globe Correspondent, 8/23/2003

Sharon Steiff grasps for words during a phone conversation from her hospital bed at Beth Israel Deaconess Medical Center. Though she suffers from advanced leukemia, at this moment she is more worried at the thought of her English students seeing her caught in any grammatical errors.

But far graver concerns lie ahead for the 45-year-old Brookline woman if doctors don't find a bone marrow donor to replace what Steiff has lost to disease. They can't find a genetic match for Steiff among either her immediate family or the small number of donors who share her East European Jewish descent.

So Steiff, like hundreds of other leukemia patients with hard-to-match bone marrow, is counting on a private donor recruitment campaign that could cost up to $80,000 in genetic testing, none of it covered by insurance. Tomorrow morning, the nonprofit group organizing -- and paying for -- the drive expects more than 1,000 people to turn up at the Maimonides School in Brookline, where Steiff teaches English. Technicians will swab their cheeks for a few cells that may match her marrow type.

"My only real chance of surviving is getting a transplant," said Steiff.

Anderson Nguyen, 11, of Saugus, dramatized the plight of leukemia patients from hard-to-match populations earlier this year when friends and family staged an international drive to find a bone marrow match. Just 6 percent of the 5 million donors on the US marrow donor list are Asian, and a smaller group is Vietnamese. Though doctors eventually found a donor, Nguyen died last week due to complications from the transplant.

However, for every patient whose search gets headlines, many more attract little attention. On any given day, about 3,000 people with leukemia and other illnesses search for donors on the National Bone Marrow Donor Program, a growing national database founded in 1986. Many will succeed in finding a match, say doctors, but some patients like Steiff can wait months or years for a transplant.

Minority groups are particularly affected because they are underrepresented in the registries of bone marrow donors, said Jay Feinberg, executive director of Gift of Life, which has a registry of 72,000 people of Jewish descent.

In the registry operated by the Dana-Farber Cancer Institute, for example, only 2 percent of the donors are black even though blacks make up 5.4 percent of the state's population, according to the latest census figures.

Although the transplantation is dangerous for the patient, bone marrow donation is about as easy as giving blood, say doctors. The marrow can be extracted directly from the bone, or from blood that is drawn from the patient's arm via a machine. The procedures are usually uncomfortable, but rarely do people experience serious complications seen in whole-organ donation.

But even after thousands have been spent on testing, a perfectly matched donor can be elusive.

"What are your chances of finding a match? It depends. It could be one in a million or one in twenty thousand," said Debra Liney, manager of unrelated donor transplant services at Dana-Farber.A person's bone marrow, like his blood type or eye color, is based on a genetic profile inherited from his parents. A patient's parents and siblings have a one-in-four chance of being an exact genetic match. Outside the family circle, groups who share a common ancestry may share the same genes.

Unfortunately for Steiff, the National Bone Marrow Program does not categorize people of Jewish descent as such because the federal government does not consider Jews an ethnic minority.

To counter the minority donor shortage, as many as 50 minority registries have sprung up around the country, according to Feinberg, encouraging African-Americans, Asians, and Hispanics to get tested and raising funds to defray the costs of testing.

"I don't feel this is about me," said Steiff, who knows her drive will improve the odds for every leukemia patient waiting for a donor. "If I don't have the miracle then it will happen for someone else."

But miracles don't come cheap, and doctors in the marrow transplant field regret that patients or their supporters have to foot the bill for the extensive genetic testing needed to find a match. "You have a curative therapy and the insurance companies won't pay," said Liney.

Patients often look to their communities to help defray the cost, according to Dr. David Avigan, director of bone marrow transplants at Beth Israel and Steiff's doctor.

But, Avigan admits, an even bigger peril for leukemia patients is the transplant itself.

"What clearly has to happen is the development of strategies to make the procedure safer," said Avigan, noting that the transplant often leaves patients extremely sick. "It's not a perfect therapy but it holds a lot of promise."

Steiff is not worrying about the transplant that may lie ahead. If her match is found, she expects to live the rest of her life on a soapbox, "getting the message out about how important it is not to wait until it's the face of someone you know."

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© Copyright 2003 The New York Times Company