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The Race of His Life
Posted by Andrew on Tuesday, February 08 @ 10:00:00 EST
Families

Multiracial patients must 'win the lottery' to find bone marrow match

By Erin Texeira
©2005 The Associated Press
February 2, 2005

Luke Do was a lively 18-month-old awaiting the birth of his first sibling when he was diagnosed with a rare form of leukemia.

The hopes of his parents, both doctors in San Jose, immediately turned to a bone marrow transplant, but they soon learned some distressing news -- Luke's ethnic heritage made him a tough match.

Sarah Gaskins, Luke's mother, has Japanese and European ancestors and his father, Lam Do, is Vietnamese-American. Because bone marrow matches usually are made with a relative or someone with the same racial or ethnic background as the patient, multiracial people rarely have success.

"It's tragic," said Lam Do, who specializes in internal medicine. "Your chance of finding a donor is so low, it's like winning the lottery. And most people are unaware of this."

For years, the medical community has pushed for increased donor registry among racial minorities to improve survival rates for leukemia, lymphoma and other blood diseases. But to the general public, the situation is little known.

Only 2 percent of those who list their ancestry with the National Marrow Donor Program are multiracial, though the NMDP will -- for the first time -- study multiracial patients' medical records this year to better understand what kind of marrow tissue they tend to inherit from their parents. The group also will try to more effectively recruit new potential donors, said Helen Ng, an NMDP spokeswoman.

"Using the patient information we have access to, we're trying to understand a little better the issues they face," said Ng, whose group, with 5.6 million potential donors registered, has the largest such list in the world.

Matt Kelley, president of Mavin Foundation, a Seattle-based advocacy group for multiracial people, says the inattention to the problem reflects society's reluctance to accept today's increasingly complex racial landscape.

"It's a headache," said Kelley, whose group has an ongoing bone marrow program. "The reality is many organizations are afraid of addressing race period -- they don't feel competent or comfortable -- and when it comes to addressing mixed heritage issues, they don't want to go there, either."

Today, whites in need of a bone marrow transplant have about a 90 percent chance of finding a match, said Dr. Patrick Beatty, an oncologist with the Montana Cancer Specialists in Missoula, Mont., who researches ancestry and bone marrow. For those who aren't white, "your chances of getting a match are pretty remote," he said.

The biological reason has to do with the body's response to infections, Beatty said. Because the world's ancient peoples were exposed to different diseases over millennia, each group developed different tissue antigens, substances that help fight illness.

The descendants of these peoples retain those highly varied tissue antigens, he said, making it tough to match the bone marrow of individuals from different ancestries.

Luke Do's family was elated when, about six months after his diagnosis, they learned a marrow match had been found for the boy with a Japanese-American police officer in Seattle.

Luke struggled for months after the transfusion, nearly dying three times, but hung on in the end. Now the Dos are making plans for him to start kindergarten in the fall -- and to celebrate the third anniversary of his transplant on March 18.

The Rivera family of Los Altos is still hoping for a happy ending.

Chris Rivera, 24, has fought leukemia with chemotherapy for six years. Chris, who also has Down Syndrome, thrived until last October when he was diagnosed with a more lethal form of the blood cancer. He desperately needs a bone marrow transplant within the next year, according to his mother, Kathy Rivera.

"It's so sad, but he's not a very good candidate for a match and it has nothing to do with the fact that he has Down Syndrome," she said. "It's because my husband is Puerto Rican, and I'm of northern European heritage."

Like many others, the family is scouring the community, posting messages on the Internet and praying a match will be found. They regularly help organize bone marrow registry drives, hoping one will beat the odds and turn up the right tissue.

 
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Re: The Race of His Life (Score: 1)
by ric on Tuesday, February 08 @ 11:15:52 EST
(User Info | Send a Message) http://www.xanga.com/ric2
Maybe try some experimental applications of Stem cells?

Thats why situations and stories like this, our school system, well at the college level, students should sign up for some kind of marrow matching DB program. Just like giving blood, it should be our human responsiblity to do so. The way how our country's biomedical research is and bullshyte political mumbo jumbo that goes with it WE should do what we can to help your fellow human being out from medical/Public Health standpoint

Well this goes to show there is such a thing as "RACE" for those who continue to think we are homogenous.



Re: The Race of His Life (Score: 1)
by OmegaSupreme on Tuesday, February 08 @ 13:21:51 EST
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This reminds of me of a sad experience I had when attending college. There was a hapa male student who developed leukemia and needed a bone marrow transplant to survive. His fiance (who is japanese) made countless appeals for other asian and mixed asian students to get themselves tested to see if they were a suitable match.

Hundreds were tested (including myself), but there was no suitable donor found. They married a couple of months later but he died a short time later. Regardless, the odds of finding a suitable donor were very very low at the time.



cord blood banks (Score: 1)
by SugarShark on Tuesday, February 08 @ 13:41:37 EST
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you will pay handsomely for something in all likelihood will never use
and the people that do need it will not get access to yours unless you sign up with an agency like the NMDP and you decide to give it to them
other countries do not allow for this two-tier health care option and have national depositories where it will be available to anyone and allow for expedited matches.



Re: The Race of His Life (Score: 1)
by bystander on Tuesday, February 08 @ 14:35:22 EST
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I just surfed here and read this article. It seems to contradict in some ways an article I read here, http://www.gazette.net/200018/frederickcty/state/10106-1.html

Race and medicine

Race also has been problematic in biomedical issues such as bone marrow donations. Many anthropologists say that when bone marrow matches are sought, using race may slow the process of finding a match. They recommend instead looking at a person's ethnic and geographic background or family history.

Consider the case of Brian Bauman, a U.S. Air Force Academy cadet who was diagnosed with leukemia several years ago.

Bauman was born in South Korea of Korean parents and adopted by U.S. citizens. After failing to find his biological parents or a match in the United States, Bauman's adoptive parents looked to his birthplace. The South Korean army had its soldiers tested, a match was found, and Bauman survived.

In this situation, anthropologists argue, a public appeal to Asians in general would have been far less effective.

"There is a need for more diversity among donors," Jackson said. "But when people use terms like 'Asian American' or 'white,' you have to ask what does that really mean.

"I've been at community settings where the issue of race-specific organ donations has been discussed, and it goes against what we understand about human diversity. It's not enough to ask African Americans or Hispanics to donate when looking for a particular match for a person who is socially classified African American or Hispanic."

University of South Florida secondary education professor Barbara Cruz found that out when she tried to answer a plea for a bone marrow donation.

Last year, Cruz, who was born in Cuba, responded to a bone marrow appeal for a 10-year-old boy in the Tampa Bay area. The boy was described as Hispanic.

When Cruz called to make arrangements for testing, she said, she was grilled by appeal organizers about her Hispanic origins and was asked to prove them by speaking Spanish.

When she added that her husband was willing to be tested, too, she was told he would not be a good candidate because he was not Hispanic.

"They said the test is very expensive, and thus only limited it to Hispanics," she said. "When I went for the test, I was taken to the area where the blood is extracted, and the nurse looked at me and asked me if I was a real Hispanic. I had to speak Spanish again.

"Their thinking is that linguistic ability makes you more Hispanic. What about second-generation people who do not have Spanish-language skills? Are they less Hispanic?"

Cruz said the irony of the situation is that a month or so later, she read in a newspaper that a match for the boy was found -- in Scandinavia.

"You would think someone would eat humble pie," said Cruz, who is writing a book for and about multiethnic teens and their identity issues. "This thing called race is not a biological reality. His match was found as far away as possible. This could have been used as a critical educational opportunity, but the article simply noted that a match was found. It was a bizarre experience."

The term Hispanic includes people from Spain to Costa Rica to Bolivia. The only thing they may have in common is language. Genetically, they may have a great deal of diversity.

Yet, Jackson points out, many medical doctors and epidemiologists continue to use racial categories as a premise for many of our medical models.

"Biomedicine has had a hard time dealing with human variation," she said. "We can't talk about discreet groups when it comes to biology. Yet in this country we continue to emphasize the categorization of people."




Re: The Race of His Life (Score: 1)
by DalaiWu on Tuesday, February 08 @ 16:24:33 EST
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"...Luke's ethnic heritage made him a tough match.

Sarah Gaskins, Luke's mother, has Japanese and European ancestors and his father, Lam Do, is Vietnamese-American. Because bone marrow matches usually are made with a relative or someone with the same racial or ethnic background as the patient, multiracial people rarely have success."

NO NEED TO FURTHER ARGUE ABOUT THE CULTURE REASONS FOR NOT DOING SO. THE MEDICAL REASONS STAND ON THEIR OWN!!!

PSYCH!!!



Re: The Race of His Life (Score: 1)
by littleswallow on Tuesday, February 08 @ 23:22:18 EST
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i always give blood when i can ( almost 2 gallons total so far).. and I am registered on the bone marrow registry because our school was doing a bone marrow drive for a chinese student. However, I knew I probably wouldn't match to that particular person. But when I finally get a call, I will be glad to save someone's life...regardless of their race. There have been documented cases of transracial matches. I wouldn't say this is the sole reason you shouldn't be in IR, as long as you love the person. But, it is indeed heartbreaking to see people die because they couldn't find a bone marrow match.

I'm going into medical school this fall and I intend on learning how to help people to the best of my abilities with compassion.


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