Angela Kimi Hickman

5/9/08

Looking for that Miracle Match:

With the lack of multiracials on the registry, match-making is a life-or-death hurdle for

those seeking marrow donors

Photo Captions: (Both photos courtesy Lam Do)

Eight-year-old Luke Do during his first Cub Scout camping trip, in May 2008

Luke with his bone marrow donor, Sergeant Randy Yamanaka, in Seattle, Washington,

2004

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Half Vietnamese, a quarter Japanese, a quarter English and Irish. And while all these

races come together to form Luke Do’s ready smile, the combination also creates a very

unique genetic makeup.

Finding bone marrow donors for a mixed race individual like Luke proves to be very

difficult. Patients most often would match a donor of the same ethnicity: Chinese with

Chinese, African American with African American, etc. “It’s DNA-based,” says Carol

Gillespie, executive director and one of the founding members of the Asian American

Donor Program (AADP), an Alameda-based nonprofit that recruits potential bone

marrow and stem cell donors from Asian American and mixed race communities to help

populate the National Marrow Donor Program’s (NMDP) registry. “They need to find

that person’s unrelated identical twin.”

But what about someone who has inherited genetic traits from parents of two or more

different ethnicities? “When you’re dealing with someone that’s mixed race, say they’re

Japanese and Caucasian, their donor’s going to be Japanese and Caucasian,” says

Gillespie. “That doesn’t make their chances easier of finding a donor, it makes it more

difficult.”

Currently, Asian Americans make up only about 482,000 of the nearly 7 million people

in NMDP’s registry. Mixed race individuals make up only about 191,000.

Bone marrow and stem cell transplants are most often needed for patients suffering from

leukemia, lymphoma, and other blood diseases. Blood-forming cells, called stem cells,

can be collected from bone marrow, the blood stream, and umbilical cord blood. These

stem cells are transplanted into a patient to replace bone marrow and the white blood

cells, red blood cells, and platelets it produces.

“If you have blood, you can get leukemia,” says Lam Do, M.D., an internal medicine

physician in San Jose and Luke’s father. “It can happen to kids, to young adults, to

parents. Anyone can get this illness. So, if there’s not enough mixed race people on the

registry, your chance of finding a donor is going to be like the same as hitting the

lottery.”

When Luke was 18 months old, he needed a bone marrow transplant. Do noticed his

son’s spleen was enlarged, and tests soon showed Luke had juvenile myelomonocytic

leukemia (JMML), a rare and aggressive blood cancer.

Do and his wife, Sarah Gaskins, M.D., started holding donor drives, in hopes of

identifying potential bone marrow matches. They worked with AADP as well as the

Mavin Foundation, an advocacy group based in Seattle, Washington which organizes the

MatchMaker Bone Marrow Project that targets the mixed race community.

Soon a potential donor was identified, although he wasn’t a perfect match for Luke’s

tissue type. Randy Yamanaka, a sansei police sergeant in Seattle had joined the registry

five years before at a station donor drive. He was considered a five out of six match for

Luke, meaning five out of the six proteins, or antigens, of his tissue that were tested

matched Luke’s. The better the match, the more likely the blood-forming cells would

survive and began to reproduce new marrow for Luke. A better match also meant less of

a chance for the donor immune cells to attack Luke’s tissue, in a potentially fatal

condition called graph versus host disease.

As science has progressed over the years, more antigens have been identified as essential

to making a good match. “So now it’s 10 out of 10,” says Gillespie. “They know if they

set those four extra markers, that the graph versus host disease is almost nonexistent.”

Although these higher standards have lowered the risk and increased success rates,

Gillespie also notes that this makes a patient’s chance of finding a match more and more

difficult.

It has now been six years since Luke’s transplant. He has triumphed past the five year

mark; a point at which a patient is considered cured. It has been a gradual and often

difficult recovery process for Luke, yet even through it all, he hasn’t forgotten how to

smile. “You look at him, you cannot tell that he’s been through so much,” says Do. “He

runs around; he’s a happy kid.”

For more information about bone marrow and stem cell donation, visit the Asian

American Donor Program’s website, www.aadp.org, or call (510) 568-2700; National

Marrow Donor Program’s website, www.marrow.org, or call 1 (800) MARROW2 (1-

800-627-7692).

No, they don’t take a part of your bone….

Here are a few important things to know about bone marrow and stem cell donation.

Getting tissue typed is now easier than ever. The process is quick and painless,

consisting of four swabs rubbed against the inside of the cheek. Giving a blood

sample is no longer necessary.

Tissue typing is often free for Asian Americans, multiracial Asian

Americans, and other minorities through the Asian American Donor

Program. Because of the limited number of these groups in the National Marrow

Donor Program’s registry, the $52 registration fee is usually waved. Go to

www.aadp.org for more information.

Only 30% of the stem cell requests today are for bone marrow. 70% are for

peripheral blood stem cells.

Bone marrow donation involves removing the thick, blood-like substance from

inside the pelvic (hip) bone. This is done through inserting a needle into the bone,

which is done under regional or general anesthesia. “People have told me that

they have gone back to work the next day,” says Carol Gillespie, executive

director of AADP. “You’re definitely going to feel sore, achy, and black and

blue. They put some pressure on those hips.”

Peripheral blood stem cell donation involves removing stem cells that have

been released into the bloodstream. The donor receives a shot in the arm, four or

five days in a row, to stimulate the growth of the stem cells. During a four to six

hour process, blood is removed from one arm and filtered through a machine to

separate the stem cells. The blood is then replaced into the donor’s other arm.

Keep your contact information up to date. Gillespie stresses the importance of

notifying AADP or NMDP of your current phone number and address. Too many

potential donors have come up as a match but have been unable to be contacted

because of outdated information.