Saving lives, one match at a time
By Sean Maher
Posted: 07/18/2010 03:15:13 AM PDT
Updated: 07/18/2010 03:15:29 AM PDT
Josiah Zumot was diagnosed at 3 months old with a rare, likely fatal condition. The now healthy 6-year-old San Mateo boy can thank a stem cell donor from Australia for his recovery, but many others in the Bay Area — especially ethnic minorities — won't get the matches they need unless a lot more people register as potential donors.
Donations of the kind Josiah needed require an extremely close blood match between the donor and patient, so compatible donors are rare. It took a year before Josiah got the stem cell treatment he needed to fix his immune system.
He probably wouldn't be alive without a registry of potential donors turning up the match, and such registries are dangerously low when it comes to ethnic minorities, said Carol Gillespie, who heads an Alameda nonprofit tackling the problem.
To increase the chances for ethnic minorities to find the match they need, the Asian-American Donor Program has been staging donor registration drives across the Bay Area, with more in coming weeks in Redwood City, San Jose, Oakland and Hayward, among other places.
Treating the disease
Treatment for the condition that attacked Josiah's immune system reduced his blood platelets to about one-tenth of what the average person has. His parents had to keep him home to guard against infection, and he developed allergies to a wide range of foods.
Bone marrow creates blood, and in effect is a person's
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immune system, Gillespie said. When marrow becomes cancerous, removing it is especially dangerous. A patient will undergo days of chemotherapy and radiation, destroying all their existing marrow and leaving them with no immune system.
"If anything happens to that donor, the patient will die for sure. There's no way the body can regrow that bone marrow on its own," Gillespie said. "They collect the stem cells or marrow and hand-carry it to the patient and inject it like a blood transfusion. It knows where it belongs, so it goes by itself into the cavities of the bone, and the patient sits there and waits for 30 days hoping to see red and white cells start growing."
Minority donors needed
The donor program primarily works for patients with leukemia, which is "an equal opportunity disease" in terms of who gets it but poses a special threat to members of ethnic minorities, Gillespie said.
"When you need stem cells, you're essentially looking for your unrelated, identical twin," she said.
As a result, most donors come from ethnic backgrounds similar to the people they save.
For white patients, the outlook is relatively bright: There are 6 million potential donors registered in the United States alone. Only one-tenth of that number of Asian-Americans are registered, and other ethnic minorities have similarly low numbers.
"But we know there's no such thing as just an Asian," Gillespie said. "They're Chinese or Korean or so on. So if you're Chinese-American, you're looking at a pool of 63,000 people, and you're not likely to find that match."
About 10,000 people a year need a stem cell or marrow donation in the United States, and only half are able to get it, Gillespie said.
Waiting for a match
Oakland resident Hannah Yoo, 29, grew up active, playing every sport she could until about 10 years ago, when she was diagnosed with aplastic anemia, a rare blood disorder that required her to get a blood transfusion every six weeks or so but worsened to the point that now she needs one biweekly.
"They're not painful, except for the needle," she said. "I've been pricked so long, my veins have hardened and scarred, so it's hard to find a vein."
A transplant could turn things around, but Yoo is Korean, "and we have the smallest pool of donors out of any ethnic group, so my chances of finding a match are basically slim to none," she said.
If a match miraculously came through, she said tearfully, "I could stop living in a bubble. I could do things everyone else takes advantage of, and they don't really think of; even just like elbowing people in a crowd.
"I'd just be grateful just to be able to walk a hill without having to stop and take a breather," she continued. "I would be able to go out and hang out with any of my friends, I could chop onions, and I could get married and have children."
Shattering myths
The process of registering is fast and painless, Gillespie said, and her biggest obstacle is misconceptions by potential donors.
Images of the donor experience common in people's imagination — those of huge needles that crack and pierce bones, painfully sucking out the marrow — are wildly inaccurate, Gillespie said. Stem cells are found in bone marrow, but also in "peripheral blood" taken from arm veins and from umbilical cord blood.
What needs to match up between donor and patient are proteins that sit on white blood cells, Gillespie said, and getting a sample sufficient to determine that match is a fast, painless process. A potential donor fills out some paperwork and answers some questions — less personal and extensive than those asked for blood donations — and lightly swipes cotton swabs on the inside of their cheek.
Three-quarters of patients in need of donor cells can get the help they need simply from a specific kind of blood donation, which requires no anesthesia for the donor and, aside from a few needle pricks in both arms, is painless.
What it's like to donate
Mountain View resident Vivek Kumar, 33, can speak from experience. He donated stem cells to the same leukemia-afflicted woman three times over a little more than two years, he said.
"As it turned out, I was the only donor match for her in the entire world," Kumar said. "So it was almost a moral duty to help her out. It's one thing to donate money, to help people financially or emotionally. This was helping save her life. It was quite overwhelming to think of the bigger picture."
For five days before each donation, Kumar said, he was given injections of a medicine that stimulates his body to produce stem cells at three times his usual rate. As the week wore on, he would begin to feel some fatigue that gradually increased, kind of like having a flu without the nausea. Kumar said he was able to work four of the five days in his workweek before he decided to take a day to rest.
"Then they use this funky machine, basically a big centrifuge," Kumar said. "They stick a needle in my right arm that draws blood, then the machine separates the blood and takes out the stem cells, then remixes the rest of the blood and puts it back in through a needle in my other arm."
That final step takes between three and six hours, Kumar said, time he uses to watch a movie or two, or read a magazine.
In the end, Kumar's blood recipient died of her disease, he said, but his effort to help save her wasn't wasted or failed, not as he sees it.
"I had an opportunity to extend someone's life and give her more time with her family and friends," he said. "It's an awesome feeling. I appreciate it lasted as long as it did. I wish I could have had a chance to meet her, but I'm glad that I could help out."
Happy to be a donor
Los Altos resident Jimmy Kang, 50, talks excitedly about doing a full marrow transplant for a stranger.
"The whole process was like clockwork," Kang said.
He was put under full anesthesia, and a needle inserted through his lower back drew out marrow from his pelvic bone.
"I stayed at Stanford overnight, and they gave me great meds, so I went to work the next day," he said. "That's not recommended, of course, and anesthesia wore off, and I got nauseous, and I had an ache in the back of my pelvis where they drew the stuff. But after five days it was completely gone just like they said."
Kang said he isn't superstitious as many of his culture might be, and he's enthused that younger generations are becoming donors. Being a marrow donor has been a rewarding experience, he said.
"I get more out of this than he does, I think," Kang said of the man he helped save. "It's just fascinating, watching him as he continues his life."
For a list of upcoming donor registration drives, go to www.aadp.org and click on "Calendar."
Contact Sean Maher at smaher@bayareanewsgroup.com.
MARROW DONORS
6 million potential donors registered in the United States with marrow that could be a match for white patients.
A tenth of that number
that could be a match for Asian-Americans is registered. Other ethnic minorities have similarly low numbers.
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