National Marrow Donor Program Needs More Asian Donors

For patients suffering from bone marrow failure disorders such as aplastic anemia and myelodysplastic syndromes, bone marrow stem cell transplants are a life saving therapy. The only problem is, according to North West Asian weekly, a person in need of such treatment has about a 1 in 50,000 chance of finding a match. Due to a lack of registered donors, Asians in the U.S., along with other minorities, are among those with lowest probability of a successful match.

Here's the donor breakdown according to National Marrow Donor Program (NMDP) data from December 2008:

  • 5.3 million White,
  • 690,000 Latino,
  • 550,000 Black,
  • 520,000 Asian,
  • 210,000 mixed race,
  • 83,000 American Indian,
  • 10,000 Pacific Islander 

Asians and Pacific Islanders make up roughly 7 percent of the 7 million bone marrow donors nationwide.

Dr. John Choe at the University of Washington School of Medicine:

“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,”

Siblings are the most likely match, with other direct relatives also more likely to be compatible. Though less probable, complete strangers with similar ancestry can also be a life saving match, this is why the NMDP is so important.

Choe and his colleagues have some ideas as to why Asians are so underrepresented on the NMDP:

“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,” 

New procedures have virtually eliminated the pain of marrow donation.

Anh Nguyen Reiss,  a 43-year-old Vietnamese immigrant, a mother, and an obstetrician/gynecologist in Houston, was diagnosed with Myelodysplastic Syndromes this year. She requires a matching Vietnamese stem cell donor to survive. 

Huu Nguyen, Reiss’ brother and an attorney in New York, said the following:

“Asian donors are very underrepresented, the percentage is even smaller for Vietnamese donors. None of the 16,000 Vietnamese donors in the national registry matched with Anh.”

Anh Nguyen Reiss:

“Education and awareness in the community is a big problem, especially in immigrant communities, 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?”

According to North West Asian Weekly, due to language and cultural barriers, information is difficult to access for Asians in the U.S., specifically in the immigrant communities.

Anh Nguyen Reiss:

“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.”

Advances in medical procedures have greatly simplified and improved the process of bone marrow stem cell donation, making it  a painless procedure with little or no recovery time required. Now is a great time to join the NMDP and perhaps save a life. 

To learn more check out the NMDP's web site, www.marrow.org

 

 

 

 

 

 

Aplastic Anemia Treatment Out of Reach for Rural Chinese

Four year old Jiang Shubao suffers from aplastic anemia, a rare blood disorder often caused by benzene exposure. The potentially fatal disease disrupts the ability of bone marrow to produce new blood cells.

Like many aplastic anemia patients, weekly blood transfusions keep Shubao's condition under control, but the cost of the transfusions threatens his family's ability to save for a stem-cell transplant. Shubao's doctors say a stem cell transplant would have an 80 to 90 percent chance of curing his condition.

"only a stem-cell transplant can cure the disease and the earlier the better. Blood transfusions can control the disease but to many can affect his immunity and the efficacy of the transplant" -Dr. Chen Jing

Jiang Shubo's family lives in a small village in southwestern China's Guizhou Provence, and is struggling to pay for the treatments their son needs. The family makes 1000 Yuan (US$146) a month and remains 50,000 Yuan short of the needed 100,000 Yuan for a stem cell transplant.

Jiang Shubo's ten year old sister Jiang Yuelan sister has been declared a stem cell match. She is eager to help her brother and paints pictures for anyone who contributes to the cost of the transplant.

"We only have 50,000 Yuan savings, the weekly cost of blood transfusions is 2,300 Yuan. I don't want to use up the savings on blood transfusions." -Zhou Lianying, Jiang Shubao's mother
 

 

Twin Donates Bone Marrow after Aplastic Anemia diagnosis

Garrett has an 8-year-old twin brother, Tanner.  Garrett also has Aplastic Anemia.  Aplastic Anemia is a rare, serious blood disorder in which the normal  production of blood cells - red, white and platelets - slows or stops.

Garrett is lucky to have an identical twin.  Few who are diagnosed with Aplastic Anemia have a healthy identical  twin  that they can turn to for a bone marrow transplant which can develop a new immune system.

Dr. Emad Salman, the youngster’s hematologist/oncologist at The Children’s Hospital at HealthPark in LeeCounty, has cared for thousands of children with blood disorders and cancer.

He said this is a first in his 11 years at the hospital.

“This is the first time I’ve seen a child who needs a bone marrow transplant who has a twin brother who will be the donor,” he said.

In preparation for the transplant Tanner was given iron pills to boost his red blood cell count and Garrett started chemotherapy to wipe out his immune system and be ready to start a new one.

Researchers are fascinated as to why only one of the twins became sick and not the other.  Tanner spent a few days in the hospital while they did the blood draw.

“It’s going to suck,” Tanner said.

“Because he has to get poked,” Garrett explained about his brother’s blood draw for his bone marrow. “I get one but I’m going to be asleep. Hah.”