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A bone marrow matching program has helped with thousands of transplants since its inception.
By BILL ADAIR, Times Staff Writer
© St. Petersburg Times, published September 26, 2002
Somewhere in the world was a stranger who could save Tonya Ghant's life.
Ghant, a Tampa resident, had leukemia and had been told her chance of surviving was "slim to none." Her only hope was a bone marrow transplant, but she faced long odds in finding the right donor because her marrow had a rare antigen.
For months, she endured chemotherapy and long stays in the H. Lee Moffitt Cancer Center & Research Institute. She was weak and tired. At her lowest point, she called her father and said she was giving up.
"I'm ready to go," she said.
Then, about six months later, her phone rang. The stranger had been found.
The National Marrow Donor Program, which will celebrate its 15th anniversary today, is a matchmaker.
About 30 percent of patients with leukemia or other blood disorders can get a transplant from a relative. But until the federal program was created in 1987, the remaining 70 percent had virtually no way to find a donor.
The program matches donors and recipients by the markers on their white blood cells known as antigens. In order for a transplant to be successful, the antigens need to be very similar or identical.
The registry has about 4.7-million potential donors in the United States and relationships with 20 foreign registries with 3-million more donors. The U.S. program has arranged more than 14,500 transplants.
Patients who had no chance of surviving without a transplant generally have about a 40 percent chance after getting one.
The program was created in the mid 1980s after several families had difficulties finding unrelated donors. One such case involved Brandy Bly, an 11-year-old girl being treated for lymphoma at All Children's Hospital in St. Petersburg. She was befriended by Beverly Young, the wife of U.S. Rep. C.W. Bill Young, who often visits the hospital and meets with patients.
Brandy needed a marrow transplant, but none of her relatives matched and there was no national registry to find unrelated donors. When it was clear a donor could not be found, Rep. Young made arrangements to fulfill Brandy's final wish: a chance to meet President Ronald Reagan.
After Brandy died, her physician, Dr. Jerry Barbosa, told the Youngs that the girl would have survived if a donor had been found. He and other doctors around the country wanted the government to create a database to match unrelated donors.
When Young asked about the possibility of such a program, the National Institutes of Health balked because officials did not believe enough donors would register. But the Navy was interested. (The fact that Young was a top Republican on a key congressional committee probably didn't hurt.)
The program grew rapidly and now has two components. The $20-million Navy portion, based in Rockville, Md., employs about 65. It recruits minority donors and spends much of its money on research.
The civilian portion, the National Marrow Donor Program, receives $20-million from the Department of Health and Human Services. Headquartered in Minneapolis, it employs 300 people. A separate foundation seeks corporate contributions to pay for research and help needy transplant patients.
Young, the Largo Republican who is chairman of the House Appropriations Committee, has given the program a steady stream of money over the years. He says he understands the seriousness of leukemia because his daughter Pam was diagnosed with the disease in 1990. (She received marrow from her brother, so she didn't use the registry. She has been in good health since then.)
"I know the feeling you get as a parent -- the sleeplessness, the fear of losing a child," Young says.
The marrow program, he says, "is saving the lives of people who had no chance of living."
The stranger whose marrow matched Ghant's perfectly was Steve Collins, a construction worker in Charlotte, N.C., with a fondness for beans and black-eyed peas.
Collins, then 46, had heard about the program at church and signed up in the fall of 1996. To register, potential donors give a few small vials of blood.
On average, about 80 percent of patients find a match. But it took the registry seven months to find one for Ghant because she is black and there is a smaller pool of black donors. (Patients usually need a donor with the same racial and ethnic background.) She was 24 and had moved to Indiana with her 3-year-old daughter while she awaited a donor.
Collins, who is also black, hadn't met Ghant. He just knew there was someone who needed his marrow to survive.
Donating was much easier than he expected. He was put under general anesthesia and the marrow was removed from his pelvis. When he woke, he had a dull ache but was back at work in a few days.
Meanwhile, Ghant was in a Seattle hospital that had conducted many successful transplants. She had three days of chemotherapy and radiation that killed the cancer cells and her own blood cells. If everything worked properly, the new marrow would start growing and jump-start her immune system to prevent the leukemia from coming back.
The marrow, a red-orange liquid, was flown from North Carolina to Seattle and brought into Ghant's room in two IV bags. When Ghant saw the bags, she thought: That's going to help save my life.
It took about an hour for the marrow to flow into her body through a tube in her chest. Gradually, Collins' marrow has replaced her own. His marrow is now hers.
All her life, Ghant had disliked beans and black-eyed peas. She couldn't stand the smell or taste. But a curious thing happened after she got Collins' marrow. She suddenly developed a taste for them.
Officials from the marrow program say transplant patients occasionally have that kind of change, although they have no scientific evidence about it.
It has been five years since the transplant and Ghant is in great health. Collins' marrow seems to have defeated her leukemia.
When Collins and Ghant met two years ago, he was amazed at how healthy she looked.
"You don't look sick," he said.
She replied, "I've been through hell and back."