Local Leukemia Patients Struggle with the Shortage of Asian Bone-Marrow Donors
A Bone Marrow to Pick
Westminster native Matthew Nguyen’s battle with leukemia highlights the critical shortage of Asians registered as bone-marrow donors
The only sounds inside the white, almost painfully sterile room come from the hushed voices of the nurses outside and the beeping of monitors inside. If you want to come in, you have to put on a mask and gloves. Watching TV inside this City of Hope hospital room is 27-year-old Matthew Nguyen. The Westminster native looks the picture of health: well-fed, vibrant, young, with a wry sense of humor.
And yet he is trapped in this room in the San Gabriel Valley city of Duarte. Nguyen has leukemia, and at the moment, he has no immune system. The latest round of chemotherapy killed all of Nguyen’s bone marrow. Something as simple as a cold could lead to something worse, such as a fever, and set back his treatment. His routine here consists of blood tests, blood transfusions, insulin shots (the chemotherapy has made him diabetic) and finding some way of passing the time.
“Basically, all I have are my computers and movies,” he says. “I’m in here all day long, and I get cabin fever, and I want to get out, but I can’t.”
Nguyen, like many people with leukemia, needs a bone-marrow transplant. But he has a problem, one that prevents him from easily finding a match: He’s Vietnamese.
The National Marrow Donor Program (NMDP) has more than 7 million people registered in the United States alone. Unlike most organ transplants, like heart or kidney, in which blood type is taken into account in addition to ethnicity, bone-marrow transplants rely exclusively on finding a donor of a similar ethnic background. Nguyen would most likely find a bone-marrow match within members of the Vietnamese population. But out of those 7 million donors, only 30 percent come from minority groups; of them, only 17,000 are Vietnamese.
So far, Nguyen has struck out with the available donors. The only way to increase his odds is to find and register more donors—a task, ironically, that Nguyen worked on during college.
Helping him in his search is Asians for Miracle Marrow Matches (A3M), an organization dedicated to raising awareness of the need for more minority groups within the bone-marrow registry; the Project Swab, a group formed this year by Anaheim native Thao Tran (full disclosure: Tran is the author’s sister), dedicated to supporting Vietnamese blood-cancer patients; and his own support group, Team Matthew.
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Nguyen was born in Westminster, and like many California-born sons, he loves the beach. His undergraduate-college years were spent at UCLA, where he majored in pre-med and met his fiancee, Chloe Nguyen (no relation).
During those years, he spent his free time volunteering at bone-marrow drives, unaware he was building a larger donor pool for himself.
During his second year at pharmacy school in Virginia in 2007, after a trip to Fountain Valley hospital for a bloody nose that would not stop, Nguyen found out about his illness. “That’s when they tested the blood, and they made everybody wear masks. They didn’t tell me anything,” he recalls. “And they isolated me in a room. After they isolated me, I remember—this is horrible—the doctor walks by [and says], ‘You probably have leukemia,’ and he just kept going.”
Nguyen was subsequently diagnosed with acute myelogenous leukemia, a cancer of the blood that affects the production of white blood cells. According to Dr. Willis Navarro, the medical director for bone-marrow transplants for the NMDP, the way leukemia works is that “[one of] the cells within the bone marrow . . . changes and becomes malignant. When the malignant cells begin to grow, it crowds out the normal cells within the bone marrow, which causes a problem with bone-marrow production of blood.”
After 16 months and five rounds of chemotherapy, as well as an onset of gastritis, pancreatitis and a lung infection, Nguyen’s tests came back clean. It seemed the leukemia had been destroyed; things were starting to look normal again. Yet this past February, a routine bone-marrow biopsy revealed the unsettling news that the cancer had returned, this time more aggressively. Nguyen would need a bone-marrow transplant if he wanted a chance of a full recovery.
That’s when the search began and Team Matthew was born, intent on finding Nguyen—as well as other Vietnamese patients—a bone-marrow match. Team Matthew has been holding marrow drives while working closely with A3M. According to Madhuri Mistry, A3M’s community-relations manager, the organization has recently started focusing on Vietnamese patients, primarily in Orange County, which has the largest Vietnamese population outside of Vietnam (135,548 people, according to the 2000 Census).
Founded in 1991, A3M originally focused on the Asian population. “As we continued with our work, we realized that African-American communities, mixed-raced communities, and Hispanic communities need to increase their donor base, so we now work in all of those communities in California and across the nation,” Mistry says. The group holds marrow drives exclusively within Southern California.
Currently, out of the 10,000 Americans per year who are diagnosed with blood cancer, 700 are Asian. In 2008, only 125 of those received transplants.
So far, Team Matthew has registered more than 10,000 Vietnamese donors, 70 percent of them from Orange County.
Nguyen’s family has held bone-marrow drives every weekend, which has been both a blessing to him and a source of guilt. He especially worries about his fiancee, whom he was supposed to marry in May. Due to his relapse and chemo treatments, the wedding, though all paid for, had to be postponed.
“I feel like I’m holding her back. What she plans to do in the future depends on me now. We can’t have kids yet,” he says. “Sometimes, I feel like I’m a burden.”
School is also on hold. Because of the cancer, Nguyen has missed two years of pharmacy school. If he were to return to Virginia now, he would have to repeat his first year. If he had not gotten ill, he would have graduated this in May.
“You see all your friends getting married and finishing school, and you’re stuck. You can’t really continue, and you don’t know what to do,” he says. “It’s very frustrating.”
Recently, Nguyen got more disheartening news when he was told that a donor had been found for him. After two months of chemotherapy and agonized waiting, he found out that the donor, for unspecified reasons, had decided not to commit to the process.
“The worst thing is knowing there’s someone out there who could save your life, and they don’t want to do it because they’re scared,” he says. “They don’t fully understand how serious it is and how easy it is for them.”
To register with the NMDP database, it only takes a cheek swab. And if a match is found and a donor called forward, the donation process itself—contrary to the horror scenes depicted in medical dramas—is no harder than giving blood. There is a needle involved, but no pain, no bone removed and no expense to the donor. Donors will feel sore for up to a week afterward but suffer no lasting effects.
Despite the setbacks, both personal and medical, Nguyen remains resolute and cautiously optimistic. He believes that everything happens for a reason, even if sometimes, he can’t find it.
Three other Vietnamese patients in Orange County have recently gone public with their need for bone-marrow transplants. Like Nguyen, they have not found matching donors.
“If I don’t ever find a donor, and we find a donor for someone else,” Nguyen declares, “I’ll be happy because I know that we’d be helping other people.”
For more information and ways to register, please visit the Navel Gazing blog.
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