‘Be The Match’ Urges Blacks to Join Donor Registry for Sickle Cell Patients

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by Mary Chapman |

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Be The Match donor registry

With a stem cell transplant (SCT) being a potentially curative treatment for sickle cell disease (SCD), a blood disorder that disproportionately affects Blacks, a donor registry is encouraging more African-Americans to join its ranks.

Be The Match, the world’s largest and most diverse marrow registry, has opened Be The Match Atlanta to support greater registry participation by Blacks and African-Americans in that metropolitan area.

“We are asking for Black Atlantans … to help those in our community who are suffering from blood cancers and sickle cell,” Xavier Brandon, a Be The Match representative, said in a press release.

Of the 22 million people listed as donors on the Be The Match Registry, 4% are African-American. Because patients and donors who are not related often match best when they share ethnicity, it estimates that Blacks with diseases such as SCD and leukemia have a 23% chance of finding a transplant donor, while white patients have a 77% chance.

“You will only be asked to donate if you are identified as a perfect match for a patient in need,” Brandon said. “Some people receive the call in months, others after several years, and many are never called to donate. But it only takes a simple cheek swab to increase the odds of a patient finding their perfect match. You can provide hope for people fighting for their lives.”

Stem cells can be obtained from a donor’s bone marrow, peripheral blood, or umbilical cord blood at the time of birth. Transplant involves replacing the patient’s bone marrow with that of a healthy donor. If the transplant is successful, the sickle cell patient may be cured. A transplant surgery is complex, however, and like all treatments, carries particular requirements and risks.

One patient in need of a transplant is 10-year-old Ava of Snellville, Georgia, who experienced her first SCD pain crisis when she was 5 months old. Over the last 10 years, Ava has been hospitalized more than 70 times, and her spleen, adenoids, tonsils, and gall bladder have all been removed.

Because she has no compatible match in her family or on the registry, a transplant currently is not possible.

Past donors are stepping up to encourage others to follow suit. Tunisia Thorne, an Atlanta realtor, joined the Be The Match registry in 1999 in San Diego. Eighteen years later, she learned she was a perfect match for a 27-year-old man with leukemia. The transplant saved his life.

“This is the epitome of Black Lives Matter,” Thorne said. “It is so very simple. It doesn’t take anything away from you, and it gives something so beautiful: life.”

Richard Stewart has a similar story. An athletic trainer for Georgia Tech University, Stewart submitted a swab sample and did not think much about it. Four months later he learned he was a possible match. He donated last January and saved the life of a woman with acute myeloid leukemia.

“I would do it again in a heartbeat, and would encourage others to do so,” Stewart said.

Those who join the Be The Match registry are listed as potential blood stem cell donors. They do not  donate until they are matched with a patient.

Anyone who joins is mailed a kit to swab the inside of a cheek, then return the swab to the registry in a provided envelope. Go here to join.

Be The Match is operated by the National Marrow Donor Program, a nonprofit that works to connect patients with a matched  donor. It also provides patients and their families with personalized support, education, and guidance before, during, and after a transplant.

SCD affects roughly 100,000 people in the United States, according to the Centers for Disease Control and Prevention. It occurs in about 1 in every 365 African-American births.

August is African-American Bone Marrow Awareness Month.