Asian donors needed for youngsters in need of marrow transplants
May 9, 2001
Janet Rathner
Staff Writer

The effect of minorities not participating in the National Marrow Donor Program is devastating two county families that have 6-year-olds stricken with leukemia, and reawakening old wounds in another.

Andrew Lee of North Potomac and Emily Kim of Rockville need marrow transplants if they are to survive. Both children are Asian, and both are from families unable to provide a relative with a bone marrow match.

Their parents have turned to the National Marrow Donor Program, but still haven't found a match, in part because there are so few registered donors sharing their ethnic background.

The dilemma of the Lee and Kim families makes Ida Wang of North Potomac cry.

"I feel like it's my child," she said through tears last week. "How would you feel?"

Wang lost a nephew to leukemia seven years ago. Andrew Yuen, 17, died after a futile search for a marrow match from among the 4 million names on the National Marrow Donor Program's registry.

While never a guarantee that a match will be found, Yuen's chances were reduced, as are Lee's and Kim's. That's because the donor, in all likelihood, is someone whose ethnic background is Asian/Pacific Islander.

Like Yuen, Lee is Chinese. Kim is Korean.

And there are not many potential donors of similar background on file, only 260,397. That's just 6 percent of the registry, according to Jaime Oblitas, managing director of the National Institutes of Health Marrow Donor Center in Rockville.

Low Asian-American participation in the donor registry program means an Asian American who needs a marrow transplant, and unable to find a match from a family member, will probably die before a donor is found.

But Asians are not the only ones with the problem, as indicated by the percentages of minority groups in the National Marrow Donor Program: Hispanics, 8.8 percent, African American, 8.5 percent, and American Indian/Alaska native, 1.4 percent.

Members of ethnic groups face less likelihood of finding a match than Caucasians, whose 2,357,547 names make up 59 percent of the registry.

"A million donors are needed for finding a match," Oblitas said. "Today, the chances are greater than 90 percent [that Caucasians] will find a match. Then it goes down."

Oblitas said the federal government is trying to improve the odds by waiving the $80 fee for minorities who donate what amounts to two teaspoonfuls of blood to have it typed.

But the federal government's willingness to waive the fee still does not bring in busloads of potential donors, which has led Wang and others to do what they can to improve the situation.

For Wang, a 52-year-old marketing representative for Verizon, that meant helping found the nonprofit D.C. Metropolitan Asian Pacific American Marrow Network following Yuen's death.

Like Wang, the Lee and Kim families are doing what they can to encourage Asians to join the registry. Along with Wang, they are promoting area marrow donor drives.

Herb Lee, 52, Andrew's father, said his son, who was 3 years old when he became ill, does not complain about the chemotherapy treatments he receives up to three times a week.

"It's through IV, or sometimes through a shot," Herb Lee said. "He's tolerating it, but sometimes he doesn't feel well. He's nauseous and he can't go to school. He really misses school."

Andrew is in first grade at Rachel Carson Elementary School, although he could only attend for two weeks at the beginning of the year. Tutors come to his home when he is well enough to receive them.

Herb Lee said the family recently suffered a disappointment when a potential match was found, but the donor backed out.

But the family also had something to celebrate when a friend, donating with Andrew in mind, learned he was a potential match for someone else.

"That's fantastic news," Herb Lee said.

Kim's family is reeling from their daughter's setback. Emily, also 3 when she was first diagnosed, had been in remission but relapsed April 7. A first-grader at Grace Episcopal Day School in Kensington until she became ill, Emily's family has been told she needs a transplant within three months if she is to survive.

Kathleen Kim, Emily's mother, said since the relapse, the family has been on an emotional roller coaster. On April 24, while trying to keep their daughter's spirits up during painful medical procedures, they welcomed the arrival of Emily's baby brother, Jack.