By Wen Liu
Northwest Asian Weekly
Anh Nguyen Reiss is a 43-year-old Vietnamese immigrant, a mother, and an obstetrician/gynecologist in Houston. She has been looking around the country to find a matching Vietnamese stem cell donor to survive. In 2009, she was diagnosed with Myelodysplastic Syndrome (MDS), a disease of bone marrow cell very similar to acute leukemia.
“She was notified that she had only two more years to live. It was very tragic to the family,” said Huu Nguyen, Reiss’ brother and an attorney in New York.
“The only thing that could help her was a stem cell transplant,” he said, “but we could not find a matching donor from the National Marrow Donor Program (NMDP).”
The NMDP’s data in December 2008 shows that there are more than 5.3 million white, nearly 690,000 Latino, 550,000 Black, 520,000 Asian, 210,000 mixed race, 83,000 American Indian, and 10,000 Pacific Islander registered donors. Asians and Pacific Islanders make up roughly 7 percent of the 7 million bone marrow donors nationwide.
“Asian donors are very underrepresented,” Nguyen said. “The percentage is even smaller for Vietnamese donors. None of the 16,000 Vietnamese donors in the national registry matched with Anh.”
Statistically, there is about a 1 in 50,000 chance of finding a match. To save Reiss, there needs to be thousands more of Asian and Vietnamese donors to be registered.
According to the Columbia University Medical Center, bone marrow transplant is a medical procedure that delivers bone marrow stem cells into the patient’s bloodstream.
Bone marrow stem cells can be found inside bones such as hips, ribs, and spine. They produce blood cells.
Patients with leukemia, lymphoma, aplastic anemia, and other diseases often have to undergo chemotherapy and radiation to destroy abnormal blood cells. A bone marrow transplant replaces the damaged bone marrow with a donor’s healthy marrow.
“Successful treatment of leukemia, lymphoma, and other blood disorders depends on finding a donor who has very similar tissue types as the patient — that is, it depends on finding a close ‘match,’” said Dr. John Choe at the University of Washington School of Medicine, who added that tissue types are more similar between people who are of the same racial or ethnic heritage.
“Our preliminary research has found that there is much fear about the pain and discomfort about donation … there are also cultural taboos against donation related to Confucian ideas about maintaining the [body’s] sanctity as a way of respecting ancestors,” Choe said.
Erin Kinch, the ethnic diversity representative of Puget Sound Blood Center in Seattle, noted that the strategy to reach donors in the Asian community consisted of “dispelling rumors and myths.”
Marrow donation doesn’t hurt the way everyone thinks it does,” she said, “and most donors use a non-surgical method of donation.”
According to the NMDP, the majority of donations do not involve surgery. The peripheral blood stem cell (PBSC) donation is most commonly requested, and it is a non-surgical procedure and is done in an outpatient setting. Anesthesia is always used for this procedure, so donors don’t feel the needle injections during the process.
To reach donors in the Asian communities, information is the key.
“Education and awareness in the community is a big problem, especially in immigrant communities,” Nguyen said. “If you are an immigrant working-class mother, how do you have the resources and time to set up a bone marrow drive if one of your family members is in need?”
Information is often not as accessible to Asians, especially the immigrant communities because of language and cultural barriers. Outreaching strategies become crucial.
“We need more Asian volunteers who speak Asian languages, and have to put out flyers in grocery stores and video stores, not just e-mails,” Nguyen said.
Reiss, her family, and her friends are attending the 31st annual Marian Days pilgrimage and celebration in Carthage, Mo., from Aug. 5 to Aug. 9.
An estimated number of 50,000 Vietnamese American Roman Catholics from across the nation will attend, seeking to register more than 5,000 donors for one marrow match. ♦
Puget Sound Blood Center and Kin On Community Health Care are planning an Asian and Pacific Islander blood and bone marrow drive at the Blain Memorial United Methodist Church in Seattle on July 25, 8 a.m.-2 p.m. To sign-up, please contact Heidi Wong at 206-721-0964, extension 126, or e-mail hwong@kinon.org.
Wen Liu can be reached at info@nwasianweekly.com.
Wen says
Team Anh’s website:
http://www.teamanh.org/
Project Swabs- Vietnamese Drive Initiative:
http://projectswab.appspot.com/web/info?Language=Vietnamese