Minority marrow donors in short supply

Posted by rob on November 28, 2004 under Uncategorized | Be the First to Comment

Story last updated at 7:28 a.m. Sunday, November 28, 2004

 
Minority marrow donors in short supply

Matches are usually dictated by race, leaving many who need transplants at a disadvantage

BY HOLLY AUER
Of The Post and Courier Staff
If you’re white and need a bone marrow transplant, your chances of finding a nonrelated donor who’s a perfect genetic match are about one in a million. It may sound unlikely, but you’ll probably get one, since there are more than 5 million people enrolled as potential donors in the National Bone Marrow Donor Program.

If you’re black, Asian or Native American, though, the odds plummet, because there aren’t enough people in those groups in the national registry. The genes that correlate to donor matches are usually tied to race, so minorities are at a disadvantage when awaiting a transplant.

Siblings offer the greatest chance for a genetic match, but only 30 percent of people who need transplants, most of whom have leukemia, are able to find a donor in their family. As family size continues to decrease — the average number of children per family is now 1.86 according to the 2000 Census — doctors expect more people will need to tap into the registry.

Each year, about 35,000 people in the United States are diagnosed with diseases for which a marrow or blood cell transplant could be a cure.

“A bone marrow transplant used to be a treatment of last resort,” said Dr. George Geils Jr., medical director of Roper Hospital’s blood and marrow transplant program. “But improving technologies and improving mortality rates have really made it the best option for a lot of patients.”

When Janie Goodin, a 62-year-old Awendaw resident who is black, learned she had chronic myelogenous leukemia in 2002, her doctor put her on Gleevec, what many called a leukemia wonder drug. For her, though, the side effects were almost worse than the disease itself, and it became clear that she would need a bone marrow transplant.

She hoped one of her four sisters would be a match, but weeks went by before she found out. The whole time, she worried that she’d have to seek out that perfect match from the donor registry.

“The doctor told me my chances wouldn’t be as good that way,” she said. “The anxiety is unbelievable. Day by day, you don’t know what’s going to happen.”

One of her sisters did prove to be a match, and Goodin had her transplant in late September.

Today, she’s back on her feet and encouraging everyone who will listen to get on the marrow donor registry.

“If you get this disease, what are you going to do if you don’t have a donor?” she said. “You can die while you wait.”

Seventy-eight people turned out at Roper Hospital’s bone marrow donor registration drive last week, and 30 percent of those were minorities, which is more than the national average of 25 percent, noted Sarah Hathcock, a registered nurse who organized the drive.

Getting the word out to black churches has been a crucial way to draw more minority donors, she said.

“They have a lot of questions, but if we can get them in here, we can give them all the information,” Hathcock said. “The more people we have on the registry, the better chance somebody has … of matching.”

Goodin said she believes the minority donor shortage stems from a lack of education about the process. Two of her four sisters were afraid even to be tested, because they believed donating marrow is like donating a kidney, with many risks and a long recovery time.

“One sister said, ‘What’s gonna happen to my hip?’ One said, ‘Are they going to take all my blood?’” I couldn’t convince them,” Goodin said. “They didn’t believe that you can do this and not be sick.”

Doctors need blood stem cells, the tiniest building blocks of blood, from the bone marrow to conduct a transplant, which then leads to regeneration of healthy marrow in sick patients. Although donating marrow once required a procedure under general anesthesia, people now may donate stem cells through an IV catheter during a short, painless outpatient procedure.

Goodin said her sister went right back to work after her donation.

“It was so easy, she didn’t even have an ache or a pain,” she said. “It’s a shame that black people don’t realize that this thing is nothing that’s going to destroy them. It’s not a big deal.”

Free registration drives are offered several times a year throughout the Lowcountry. For more information about bone marrow donation, call the Red Cross at 744-8021, ext. 371, or visit www.marrow.org.

 

Holly Auer covers health and medicine. Reach her at (843) 937-5560 or hauer@postandcourier.com.

 
 
 

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