Why Aren't More African Americans Becoming Bone Marrow Donors?
They have the power to save lives in their community.
Within a day of Robin Roberts announcing that she was fighting a rare blood disorder, the number of Americans who signed up to be bone marrow donors increased more than 1,000 percent. After two weeks, 15,000 people had registered.
As generous as the offers were, the "Good Morning America" host didn't need them. Her sister Sally-Ann was a match, and Roberts has since passed the 100-day critical mark following the transplant.
Roberts was fortunate. There is an approximately 30 percent chance that a patient will have a relative whose bone marrow is a match. But had she been an only child without any close relatives, the pool to pick from would have been significantly smaller. The prospective donor probably would have had to be of a similar ethnic background.
Of the nation’s 10 million registered potential bone marrow donors, only 7 percent are black. In contrast, 70 percent are white.
So, what's stopping the black community from contributing?
Some blame it on the Tuskegee syphilis experiment conducted from 1932 to 1972, in which 600 black men were enrolled to study the progression of untreated syphilis. The subjects were never told of their infection nor treated for the disease even after penicillin was shown to be an effective cure.
Others point to Henrietta Lacks, a poor black tobacco farmer whose cervical cancer cells were taken without her consent after she died in 1951. The cells helped to create the polio vaccine, in vitro fertilization, cloning and more. Her story was the basis for the New York Times best-seller "The Immortal Life of Henrietta Lacks" by Rebecca Skloot.
"I'm not sure how many in the black community have read about Henrietta Lacks' story," Maxine Jones, a professor of history at Florida State University, said in an email. "Many, I am sure are familiar with the Tuskegee experiment...both stories probably confirmed the distrust of the medical profession that blacks in this country have had for years. Many of them have older relatives who refused to have anyone 'cut' on them or have an operation that might ease their pain or even save their lives."
Laura Wilkinson Sinton, a communications consultant and former member of the Feminist Women's Health Center Board in Atlanta, agreed. Blacks are even reluctant to donate blood.
"The Red Cross of Atlanta has a difficult time getting blood donations from African Americans in equal proportion to the population, and officials there have shared similar attribution of the problem -- a long standing reticence amongst older African Americans to trust the medical authorities," she said in an email. "Earning trust has been a focus for many here."
But Farrah Parker, 33, who owns a public relations and marketing firm in Los Angeles, sees things differently. Parker blames the small number on the lack of a public awareness campaign about how donating marrow, organs and tissue can save lives.
"Unfortunately, bone marrow is not a common conversation topic addressed in the black community," she said. "Medical organizations must address the need for a strategic approach to communicating with African Americans to highlight the plight that patients of color face due to their lack of donor participation."
Only about a third of the need for African-American transplants is being met by Be the Match, one of the world's largest listing of potential marrow donors, according to the nonprofit's national account executive, Nadya Dutchin.
She said, though, that the numbers don't tell the entire story. The chances of finding a match depend on a host of factors other than race.
"When compared to the U.S. population, minorities are not underrepresented on the Be The Match Registry," said Dutchin. "But matching is not as simple as that. Chances of finding a match vary by individual based on their tissue type. Due to genetic diversity, a person’s tissue type may be common, uncommon or rare."
Among the misconceptions were that all donations involve risky surgery with a long recovery, pieces of the donor's bone are removed, and it costs money to donate.
"Some people don’t join the registry because they have a misunderstanding about how painful the process is," Dutchin added. "When you donate marrow, you are under general anesthesia and feel no pain during the procedure. Most donors say they would do it again to save a life."
Faith McKinney, a 46-year-old organ recipient and donor from Indianapolis, admits she had hang ups.
In 1998, McKinney, a mother of two—one with special needs—needed a cornea transplant because of a hereditary condition. She was surprised when the black family of a young boy donated his eyes, organs and tissue.
"My first thought was that this family was rich and white because I couldn't believe a black family would give so much when they've lost a child," McKinney said. "At the time, my son was very young and the love of my life so I couldn't imagine making the choice to donate parts of him to anyone for anything. Nevertheless, I was truly grateful for their gift. I vowed that I wanted to be rich and experience giving from such abundance."
Twelve years later, McKinney got her chance when she received an email from her cousin in search of a kidney donor for her husband. McKinney believed the message was "meant" for her, but her family—even after it was proven she was a perfect match—didn't agree.
"When I did tell my parents, they immediately resisted the idea," said McKinney. "The first reason they named for not donating was my special needs daughter Camille. Also, my recipient is not related by blood which made my donation even more obscene to them. They also turned my husband against an idea he once supported. It was rough, but after a few months they supported my decision.
She added: "We are both doing great now!" referring to her cousin's husband. Without her, he may have never found a donor.
According to the New York Stem Cell Foundation, the chance of an African-American patient finding a bone marrow match is less than 17 percent, compared to 70 percent of white patients, and while that statistic alone should be enough to get people out of their seats, the call for registering remains unrelenting.
"Our ultimate goal is to provide a matching donor for every patient who needs one,” said Jeffrey W. Chell, chief executive officer of the National Marrow Donor Program, which operates Be The Match. “The only way we can accomplish this is by increasing the ethnic diversity on the registry."