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Dire needs: African Americans in health crisis

Bone Marrow Donors often hard to find.

Source:  clarionledger.com
Published: November 22, 2007
Author: Gary Pettus
 
The man's decision not to donate his bone marrow after all meant Catherine Jordan's father probably would die.

Maybe the man didn't think of it that way, but Jordan did; so did her father.

"I was asking, 'Why wouldn't that man do it?' " says Catherine Jordan, 39, of Renova. "Did he know my father?

"We couldn't talk to him; we didn't have a number to call him. We didn't even know his name."

The anonymous donor was found through the Mississippi Marrow Donor Program at the University of Mississippi Medical Center in Jackson.

So, on July 11, 2005 - 17 days before his 62nd birthday - the Rev. C.B. Jordan, pastor of Mount Horeb Baptist Church in Hollandale, a man who loved to fish and who carried his Bible everywhere, died of leukemia.

One more African American with a fatal disease - one more with a potential cure that slipped away because the person who might have saved him had a change in health, or more likely, a change of heart.

Performed about 60 times each year at UMC, a bone-marrow transplant is often a last-ditch treatment or possible cure for several diseases, including leukemia, aplastic anemia (blood-cell deficiency), bone-marrow cancer, Hodgkin's disease, lymphoma and sickle-cell anemia - a blood disorder found mostly in people of African descent.

Whoever you are, it's difficult to find a suitable donor if you need a bone-marrow transplant - the donation of stem cells that create red-and-white blood cells. The odds of finding a donor unrelated to you are about 1 in 20,000, says www.organtransplants.org.

If you're an African American, your odds may be even worse, says Mattie Coburn.

"About 83 percent of African- American patients searching for a donor won't find one," says Coburn, donor recruiter for the Mississippi Marrow Donor Program at UMC. "There aren't enough African Americans on the donor registry."

If you need a transplant, you're more likely to find a donor in your own racial group.

Some 17,000 people are listed as volunteer donors in UMC's database; about 5,600 are African American.

For the National Marrow Donor Program, which the UMC center is linked to, the total number of volunteer donors is about 6 million. About 3 million of these are white. Fewer than 500,000 are African American.

"The need is probably for 1 (million) to 2 million African Americans," says Dr. Carolyn Bigelow, a professor of medicine at UMC and director of the National Marrow Donor Program in Mississippi.

But that may not be the biggest problem, Coburn says.

"Overall, 41 percent of African-American donors are not available when needed.

"We have people who join and are not committed or whom we are unable to contact later.

"There are many reasons they are no longer interested in donating. Sometimes, it's because family members do not fully understand the potential donors' desire to help. They talk the donor out of it.

"I believe a lot of them are afraid because they don't trust the medical system. It's the same with donating blood and organs.

"They have to buy into it that this is safe and you are helping your own."

Aminah McKinnie, now 24, decided to help her own the day she turned 18. That's when she joined the National Marrow Donor Program Registry.

As a teenager, she had learned about the registry's shortage while working a summer job for the donor center at UMC; she helped recruit donors.

"We focused on black colleges," says McKinnie, of Hattiesburg. "For a lot of black people, the thought of taking the marrow is scary.

"My family and friends don't really like talking about it. But my feeling is, 'What if it were me who needed it?' "

McKinnie's friend, Jennifer "JJ" Crawley of Sumrall, never met the woman who needed her marrow.

Unless a donor is found in the recipient's family, the process is an anonymous one. But Crawley, 32, does know that her marrow went to "a 49-year-old female, probably somebody's mother."

And she knows that she may have helped save a stranger's life.

Only 30 percent of those who need a marrow or blood-cell transplant find a donor in the family, whatever their race.

"It has to be a sibling from the same mom and dad," Coburn says. "Some match each other; some may not match anybody."

You have to give blood to find out. Giving blood makes some people cringe.

"But put yourself in the recipients' place," Coburn says.

"They would go through it, too, if all they had to do was be put to sleep and have some marrow drawn. And get a Band-Aid and go home."

Most potential recipients - 70 percent - depend on the National Marrow Donor Program to find a donor or a supply of cord blood that's a match.

In that case, the Hickman family of Bolton was lucky, to a point.

A few years ago, when Patricia Hickman was pregnant with her son Tyler, her doctor urged her to save the umbilical-cord blood once he was born.

Similar to a bone-marrow transplant, cord blood can be used to replace unhealthy blood-forming cells with healthy ones.

Tyler, now 6, had healthy blood. But his older brother Tyrone Jr. had sickle-cell anemia.

Tyler's cord blood was stored away for Tyrone Jr. - just in case. That case came two years ago when Tyrone Jr. had a stroke.

His health was worsening. Physicians recommended Tyrone Jr., now 13, receive a weekly transfusion of blood or a transplant to survive his disease.

Because of the risks involved, transplants are reserved for severe sickle-cell cases and, most often, for children.

"We don't do it for adults, normally, because they already have damage to their organs," Bigelow says. This damage, caused by the disease itself, makes it more difficult for patients to survive the rigors of a transplant.

Beyond that, because of infection or some other complication, 5 to 10 percent of those who receive a transplant will die, Bigelow says.

For those who survive, there is at least an 80 percent cure rate for sickle cell. A transplant is the only potential cure for sickle-cell patients, the Mayo Clinic reports.

At any rate, rather than subject her son to weekly transfusions, Patricia Hickman chose the transplant for Tyrone Jr.

"The Lord made me a promise when I had that little boy that he was going to heal him," she says.

Because the cord-blood had been saved, Tyler did not have to go through the donation process.

His blood was a perfect match for his brother.

"It was like winter and spring," Patricia Hickman says.

"Before the transplant, everything inside you shrivels up. That's winter. When they put the new blood in him, he came back alive, like spring."

Tyrone Jr. is cured, she says.

Not so for her daughter Tyrah, 18. She, too, has sickle-cell anemia. But Tyrah and Tyler are not a match.

Even if they did, Tyrah has a bone disease that would get worse from the effects of chemotherapy, which is required of marrow recipients - it kills off the old blood cells to make way for the new.

And, as a sickle-cell patient, Tyrah is considered an especially bad risk for a bone-marrow transplant because of her age, her mother says.

"But she hasn't had a sickle-cell crisis in years. She is doing well right now. And we're just praying her through."

In the end, prayer was all Catherine Jordan, or anyone, could offer her father. There wasn't time to find another donor.

"They had found him a match," she says, "but then the man called and said he didn't want to go through with it.

"My father wasn't the type to show his feelings. But I could tell by the look in his eyes that he was giving up."

Her father had visited the sick, so they wouldn't give up and had helped take care of her sister in Texas before she died of cancer at age 32.

"If we had more African Americans who donate, maybe it would have turned out better for him," Jordan says.

"I held his hand when he took his last breath. The last thing he said to me was, 'Don't worry, I'm going to be all right.' "

Doctors had diagnosed C.B. Jordan's disease in 2003. They told him that, without a bone-marrow transplant, he would have two years to live.

They were right.