Not All Races Are Equal in the World of Bone Marrow Transplants

Shawn Austin sits in the living room of his home in Prospect heights, Brooklyn. 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 Shawn’s 41-year-old lawyer wife six months ago. In September, Jennifer Jones Austin was diagnosed with Leukemia.

“You know my immediate thought was…I am going to lose my wife to cancer," Shawn says. Leukemia is a form of a blood cancer. And in Jennifer’s case, doctors said the chance of relapse even after chemotherapy was very high. The only cure was a bone marrow transplant.

The procedure would kill the bad cells in Jennifer’s body and replace them with the healthy cells of another person. But the donor must have an almost identical genetic make up to Jennifer’s for her body to be tricked into thinking it’s her own bone marrow. None of Jennifer's three siblings fit the bill, so they turned to the National Marrow Donor Program, hoping a stranger would have just the right genes. “We thought it was no big deal. It’s a database of eight million plus -- someone’s gotta be a match,” says Austin. “Well when you are of color it’s not that easy.”

Photo courtesy of Austin Family

Of the eight million people on the national bone marrow registry, only about 600,000 are African American. Dr. James Young has been studying this as an oncologist at the Memorial Sloan-Kettering Cancer Center.

He points to diagram that breaks down access to bone marrow for people by their race. He says that in addition to the tough statistical odds, African-American patients have more complex DNA than Caucasians.

“There has been a diaspora involving that particular group over several generations. There tends to be much greater heterogeneity in their gene pool because of that,” Dr. Young says. “[This] only increases the burden on that group to try to enroll more volunteer donors.”

Information courtesy of the National Marrow Donor Program

In 2008, 40% of Caucasians who didn’t have a bone marrow match in their own family were able to find one in the national registry. The rate for African Americans was 15%. So Caucasians were more than twice as likely as African Americans to find a match.

When Jennifer Jones Austin failed to find a match on the national bone marrow registry, her family appealed to the public in ads on the Internet. The ad shows Jennifer at the table with her two kids, helping them do homework as she talks about her battle with Leukemia and urging African Americans to sign up to the bone marrow registry.

Experts say one reason people might hesitate to respond to emotional pleas like this is because they think donating is painful. But the National Bone Marrow Registry says in most cases it doesn't hurt any more than giving blood. But when a patient like Jennifer is desperately waiting for a donor, there's another option.

“You can increase the access of under-represented minorities by adding an alternative stem-cell source like cord blood,” says Dr. Young. Cord blood comes from babies at the time of their birth. But the National Bone Marrow Registry says it's a less desirable option because the process of recovery for patients is much longer.

And among all the groups, Dr. Young says African Americans again are the least likely to find a cord.

Information courtesy of the National Marrow Donor Program

Jennifer is one of the lucky ones - doctors found cord that matches her genes. A few weeks ago she received her transplant.

Jennifer sits on her beige sofa hugging a plain cream-colored fleece blanket. Her face looks nothing like the photo on her piano. No longer do her long locks frame her face. Instead, a few strands of tiny hair peek out of her bald head. She looks tired and weak from all that her body has been fighting.

“While I may be cured of Leukemia it is a life-long treatment process and I just, like, find myself constantly thinking about how do I live a new life...a new lease on life…without being paralyzed," Jennifer says. “I've got to find that place where I can be forward-thinking but all the while be mindful of -- that nothing's promised."

Photo by Habiba Nosheen

Even though Jennifer wasn’t able to find a bone-marrow donor and had to settle for cord blood, she says she’s already heard that of the 12,000 or so donors that signed up trying to save her life, there ended up being a match for other African Americans who were in need of a transplant. That, she says, makes her feel there was a higher purpose to her illness.