Wednesday, March 21, 2001

Bone Marrow Donations: More Blacks Need Apply

Bone Marrow Donations: More Blacks Need Apply
By Pamela Appea

Walter Chism says he used to think leukemia wasn’t a disease blacks had to think too much about. But after Chism’s five-year-old granddaughter, Bria, was diagnosed with chronic myeloid leukemia in the fall of 1998, the reality of leukemia’s relevance to the African American community hit home.

The Chisms, who live in the Kansas City, Missouri area, learned that Bria’s one shot at survival hinged on a bone marrow transplant. As none of her family members were able to provide a good match for Bria, their hopes turned to donor matches. Three months later, Bria and her family learned of a woman in England whose marrow was a good match, though not a perfect one, for Bria’s.

While the bone marrow transplantation procedure went well, Bria succumbed to the disease a few months after her sixth birthday. She died in my arms,” says Walter Chism, who, along with his wife LaGail, had raised Bria since birth.

Bria’s death changed a lot of things for the Chisms. They started going to church more and became more involved in their community. And in December 1999, the Chisms launched the Bria T. Chism Foundation, a Raytown, Missouri-based organization devoted to raising awareness about bone marrow donation in the African American community. By going to churches, universities, community centers and other groups, the non-profit foundation, which also provides financial and economic support to people with leukemia and other blood diseases, has signed up almost 200 African Americans in Missouri.

Bone marrow, the spongy tissue found inside the bone, is typically extracted from a donor’s hip or pelvic area. Beginning in the late 1960s, doctors have used bone marrow transplants to treat leukemia, sickle cell anemia, lymphoma and other blood-related diseases. A related procedure, stem cell transplantation, uses immature blood cells in battling some of the same illnesses.

The best donors for such procedures are usually found within one’s own biological family. But, according to experts, more than 70 percent of patients cannot find a match within their families and must seek a match from an unrelated donor.

Because some characteristics of tissue type vary among ethnic groups, it is most likely a person will find a match with someone of their own race according to the National Marrow Donor Program (NMDP), a Minneapolis-based organization that matches patients with anonymous donors nationwide through a vast volunteer registry.

But because fewer African Americans are listed on the registry, black patients in need of bone marrow transplants have even lower odds of finding a potential match--and because of this, mortality rates for blacks with leukemia are higher than for whites. Despite some Recent high-profile cases, such as the publicity surrounding the death of baseball start Rod Carew’s daughter, or Charles Dutton’s televised plea for donors to help his niece, registered donors in the African American community lag behind other populations.

African-Americans Uniting for Life” is the NMDP’s campaign to recruit more minorities to join the national bone marrow registry. Since its inception in 1995, says Helen Ng, spokeswoman for the National Marrow Donor Program, the organization has seen the numbers of African Americans in the registry more than triple.

The numbers are still discouraging. Founded in 1987, the NMDP has seen 339,000 African Americans register as donors, compared to nearly 2.5 million whites. Because the change of finding a match increases exponentially with the size of the donor pool, that means that only 490 African Americans have received transplants based on NMDP matches, while some 9,5000 whites have in the same time period. Another initiative focusing on bone marrow donation, the Judie Davis Morrow Donor Program, is named for an African American woman who died awaiting a donor; it estimates that African Americans receive transplants only 3.3% of the time, as compared to a rate of 85% to 88% for whites.

Why are there fewer black donors? According to a survey conducted by Clive Callendar, director of the Transplant Center for Howard University and founder of the National Minority Organ Tissue Transplant Education Program (MOTTEP), the five main reasons African Americans are less likely to donate organs or tissues are: lack of information, religious beliefs, fear, mistrust of the medical community and doubts that donated organs are fairly distributed. MOTTEP and other groups have had significant success in the past decade increasing the number of blacks registered as organ donors, but the demand still far outweighs the supply.

Walter Chism says people are hesitant to donate marrow because there is still a lack of knowledge about the process and how it benefits others. He also noted that racist treatment by the medical establishment, in incidents such as the Tuskegee Syphilis Experiment as well as day-to-day inequities, still linger in the minds of African Americans.

“We have to get past those old stereotypes,” Chism says, adding that diversity among registry staff itself is important. “When somebody comes to you with a request and they look like you,” he say,” he says, “Perhaps people will be willing to donate.”

Isaac Fordjour, NMDP’s Northeast manager for outreach and recruitment, says the lack the lack of African American representation in the bone marrow registry pool is regrettable.

“It’s not that African Americans are not getting sick,” Fordjour says, noting that when he goes on NMDP bone marrow drives in white communities, “the lines can be out the door,” and he has sometimes had to turn people away when the supplies ran out. On the other hand, Fordjour says, he has experienced more than one less-than-successful church-based bone marrow drive targeted at the African American: “It was basically the minister and I looking at each other,” Fordjour bluntly recalls.

“People think donating is a very painful, intrusive procedure,” Fordjour says. “It couldn’t be further from the truth.” Fordjour saw a fraternity brother die of leukemia about six years ago because the University of Memphis junior could not find a match. He joined the organization as a volunteer during that time, but he quickly found his vocation has worked on the national level since 1997: it’s more than just a job for him.

Joining the registry takes only a few minutes, bone marrow donor advocates say, including filling out a name and address form and giving a blood sample. If and when a potential donor matches with a potential recipient, the donor, the donor is asked to undergo an outpatient procedure lasting about 45 to 90 minutes—potential donors are never forced to donate. Generally a bone marrow donor spends less than a full day at the hospital. Bone marrow, like blood, is naturally regenerated by the body.

“Leukemia is a life-threatening disease. You need to make a diagnosis quickly, you need to make treatment quickly,” said Chatchada Larames, M.D., medical director of the National Marrow Donor Program, Karanes, who worked at Wayne State’s medical school in their bone marrow division for 20 years, says receiving a bone marrow donation is crucial if a patient is going to survive.

Because African Americans are often multiracial, with Native Americans, white and other ethnic groups in their ancestral heritage, Karanes says finding a bone marrow match becomes every harder. The more African Americans, Latinos, Native Americans and white who join, she adds, the better the chances for a match for everyone.

Anyone can donate bone marrow, if they are in good health, and between the ages of 18 and 60, Karanes says. Even people with mild arthritis, mild asthma and diet-controlled diabetes are typically eligible to donate their bone marrow.

Gloria Shelton, a 39-year-old real estate appraiser, says she was called a year after she signed up for the bone marrow registry at a music festival in South Carolina. “It really doesn’t hurt,” says Shelton, who received general anesthesia during the procedure. “I was a little stuff for the first two days,” she says, but adds that she would do it again in a heartbeat.

Bob Tolden is glad she did. Tolden, a mining engineer from Tuscon, Arizona, found out that he had leukemia on March 4, 1998. A single father, Tolden was afraid he wouldn’t be around to take care of his daughter. He found a match within a few months: Gloria Shelton.

Donors and recipients are kept anonymous from each other for about a year. But in gratitude, Tolden wrote to his donor. The two began to write to each other, and eventually met. “She saved my life,” Tolden says simply. Like Bria Chism, Tolden developed graft-versus-host-disease, a post-operative risk to bone marrow transplants in which the donor’s T-cells recognize they are in a new body and actually attack the body, causing severe problems. But Tolden overcome active in bone marrow donation drives. He says he stays in regular email and telephone contact with Shleton, who is now godmother to his daughter.

The bottom line, all agree, is getting the word out: black leukemia deaths can be prevented by increased bone marrow donation. “The biggest problem was lack of knowledge.”

“I don’t care where you are,” adds Fordjour. “You can host a donor drive, or at least tell another person. You can do something about it today.”

Originally published March 21, 2001