RENEE MONTAGNE, host:
Bone marrow transplants are often the only treatment for blood-related cancers. However, the treatment requires a patient to find a donor who shares a similar genetic make up. In most cases, that match is found in someone of the same race. As NPR's Habiba Nosheen reports, the black community has an especially tough time attracting donors.
HABIBA NOSHEEN: Shawn Austin sits in the living room of his home in Brooklyn, New York.
Mr. SHAWN AUSTIN: Oh, she's beautiful in that picture. She's kind of...
NOSHEEN: He grabs a photo of his wife from on top of the piano. It shows an African-American woman with long, straight hair, a slender build and a mischievous smile. That was Sean's 42-year-old wife last year. In September, Jennifer Jones Austin was diagnosed with leukemia.
Mr. AUSTIN: You know, my immediate thought was, OK, I'm going to lose my wife to cancer.
NOSHEEN: There was one way to save his wife's life: a bone marrow transplant. With no sibling match, they turned to the National Marrow Donor Program.
Mr. AUSTIN: We thought it was no big deal. It's a database of eight million plus people, you know, somebody's got to match. Well, when you're of color, it's not that easy.
NOSHEEN: In 2008, 40 percent of Caucasians who didn't have a bone marrow match in their own families, were able to receive a transplant through the National Marrow Donor Program - the rate for African-Americans, 15 percent. One reason for the difference, fewer blacks sign up to be donors than whites.
But there's one other barrier: African-Americans tend to have a more rare genetic makeup than Caucasians, because their genes tend to be more mixed racially, making finding a precise match that much tougher.
When Jennifer Jones Austin couldn't find a match, her family appealed to the public in ads like this one, shown in black churches and on the Internet.
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Ms. JENNIFER JONES AUSTIN: I and my family and my friends have been frantically searching for the last little while, for a donor who can help me...
NOSHEEN: Experts say despite emotional pleas, like this one, blacks are resistant to donating.
Mr. AKIIM DESHAY: That's a very, very, very deep, deep issue in the black community, and it really stems from having a mistrust of what a lot of African Americans consider, the system.
NOSHEEN: That's 38-year-old Akiim DeShay, who says given the way blacks have historically been treated by the health system, it's no wonder they aren't rushing to do cheek swabs to have part of their DNA registered with the National Marrow Donor Program.
Mr. DESHAY: I recall, you know, I had the same feelings. I never ever, ever gave blood.
NOSHEEN: But his own attitude changed in 2003, when he learned that he needed a bone marrow donor or he would die.
Mr. DESHAY: My thing was, you know, first of all, you know, I don't know these people. They're going to be sticking me with needles, you know. You know, I just can't trust someone to stick me with needles.
NOSHEEN: His sister's marrow saved his life. Now he spends his time recruiting other blacks to sign up.
In addition to the mistrust, many fear that being a donor is painful. But thanks to advances in science, donating can be relatively pain-free.
But without enough black donors, Shawn Austin's wife, Jennifer, was running out of time - so doctors turned to a less desirable option.
Ms. AUSTIN: Essentially I received cord blood from a newborn baby.
NOSHEEN: So, cells from umbilical cord that matched Jennifer's genetic makeup were used to save her life, an option with longer recovery times and sometimes the fear that the cell supply might not be enough.
Ms. AUSTIN: There have been days where I've stayed on this couch from nine o'clock in the morning, until five o'clock.
NOSHEEN: Jennifer sits on her beige sofa. Her face looks nothing like the photo on her piano. No longer do the long locks frame her face. Instead, a few strands of tiny hair peek out of her bald head.
Ms. AUSTIN: While I may be cured of leukemia, it is a life-long treatment process. I've got to find that place where I can be forward-thinking, but all the while, be mindful that nothing's promised.
NOSHEEN: Jennifer wasn't able to find a bone marrow donor and had to settle for cord blood. But, she says she's already heard that of the 12,000 or so donors who were mostly blacks that signed up trying to save her life, there ended up being matches for other African-Americans who needed transplants.
That, she says, makes her feel that there was a higher purpose to her illness.
Habiba Nosheen, NPR News, Washington.
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