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Newlyweds Searching for Bone Marrow Donor

Posted: Jan 24, 2013

OAKLAND, Calif. – Just when things were looking up for journalist Kevin Weston -- he had just been offered a prestigious Knight Journalism Fellowship at Stanford University and he and his partner, Lateefah Simon, had less than a year earlier become parents of a baby girl – last August, he was diagnosed with an extremely rare form of blood cancer. The disease had compromised his immune system and became compounded by an infection to his throat.

Doctors gave Weston, 44, two weeks to live.

Since being diagnosed, Weston has endured a month-long stay in the ICU, five emergency surgeries and multiple hospitalizations. Some time during his ICU stay, he married Simon, a nationally recognized civil rights leader.

Weston is now back home, but still in medical treatment. The radiation and chemotherapy treatment he is undergoing is helping him some, but he needs a bone marrow transplant in order to survive, and he needs it within two months. [Bone marrow generates blood cells.]

Marrow matches are ethnically based and depend on one’s genetic makeup. Weston is African American and his most likely match will also be African American. Those who are not Caucasians are more likely to die of leukemia or other blood cancers because there is a shortage of ethnic minority donors on the national registry, noted Perry Bowens, recruitment manager of the northwestern district of the National Marrow Donor Program (NMDP).

About 70 percent of the potential 10 million donors now registered in the national registry are Caucasian. Just under a third of listed donors are members of ethnic minorities -- 7 percent of them African Americans, 7 percent Asians, 10 percent Hispanics and the rest of Native American, Pacific Islander or other races.

What is making it even more difficult to find a match for Weston is that he has a rare form of blood cancer, noted Bowens during a bone marrow drive organized on Jan. 21 at the African American Museum and Library in Oakland, Calif.

Cassie Marshall, 26, was among those who had dropped in to register at the museum.

“I know there are a very few African Americans in the registry, that’s why I’m here,” Marshall said, adding: “Besides, Kevin is a family friend.”

Bone marrow donor program organizers are casting their net wide, in the hope of recruiting as many people from ethnic communities as possible. Two other drives were held Monday, one in San Jose and the other in San Francisco, both organized by the Asian American Donor Program (AADP).

Others drives are planned at the Third Baptist Church at 1399 McAllister Street, San Francisco (Jan. 27), at San Francisco City Hall Feb. 11 and The Quad, 525 Fourth Street, Oakland (Feb. 23).

Why the reluctance among African Americans to register?

Bowens pointed to the historical distrust among African Americans of the medical system, thanks in part to the notorious Tuskegee syphilis experiments from 1932-1972 conducted by the U.S. Public Health Service to study the natural progression of untreated syphilis in rural black men.

AADP’s Executive Director Carol Gillespie said that African Americans are reluctant to register because “they don’t trust needles.” Many think donating bone marrow involves big needles shot into the small of the back. That’s not usually the case any more. [TK – what’s the procedure now?] And for the record, bone marrow gets regenerated soon after extraction.

Weston and Simon have launched a national effort to register at least 1,000 African Americans to find a match for him and other African Americans in similar situations.

"My story is just one of many," said Weston. "There are thousands of African-Americans and people of color around the country who desperately need a bone marrow transplant but can't find a match.

“My wife and I started this campaign to do what we can to raise awareness about this urgent issue and to register as many people as possible."

Registering takes just a few minutes, and involves a pre-screening and swab sample of the inside of the cheek.

People can also go online to www.aadp.org and request a home kit be sent to them. For more information about Weston and Simon's story and their campaign, please visit: Kevinandlateefah.com.

For information, call the Asian American Donor Program staff at: 1-800-593-6667 or visit http://www.aadp.org/

[Note: Kevin Weston is a former editor and writer at New America Media.]

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