This Organization Plans to Recruit 2,000 Bone Marrow Donors in Nigeria
In 2012, Paul Uche, a Nigerian in his last year at the Massachusetts Institute of Technology, where he was studying chemical engineering, was diagnosed with acute myeloid leukemia. Following a chemotherapy regimen, the cancer went into remission, but soon after Uche graduated, it returned stronger than ever.
“A bone marrow transplant was deemed critical, so the search for a donor began,” recalls Uche’s brother, Bernie. “Unfortunately, due to the underrepresentation of people of African descent, the search took much longer than we hoped. The sheer strength of the cancer meant that Paul had to be put on an incredibly strong chemotherapy program. A bone marrow donor was eventually found, but the intensity of the chemotherapy weakened Paul’s body, making it impossible to perform a transplant. This is what eventually led to his passing.”
“After we lost yet another young, intelligent, and extremely talented friend in Paul, we had to do something to increase the number of African bone marrow donors on registries in Africa and worldwide,” says Uche’s friend Ronke Babalakin, a fellow Nigerian who works for a venture capital firm in New York City.
And so the African Bone Marrow Program (ARA) was born. The grassroots organization was cofounded by Babalakin in 2014 to increase the number of registered bone marrow donors in Africa and across the world. As Babalakin points out, blood diseases such as sickle-cell anemia and cancers such as lymphoma and leukemia are on the rise in Africa, and while these diseases can be effectively treated with bone marrow or cord blood transfers, a lack of registered donors with similar genetic heritages means that far too many people are dying without being effectively treated. According to the ARA, only 0.006 percent of people in Africa are registered as potential donors. The donor-to-population ratio in Western countries is 500 times greater.
ARA has five immediate goals, says Babalakin: to recruit 30,000 African bone marrow donors by December 2018; to ensure the donors can be found in international donor searches; to educate African communities about treatments for blood cancers and sickle-cell anemia; to raise awareness about the lack of Africans on bone marrow registries; and to eradicate the stigma that surrounds cancer and blood donations in Africa. Babalakin points out that along with a lack of information about the potential cures for sickle-cell anemia and blood cancers, religious beliefs and prior negative experiences make many Africans wary of blood or bone marrow transactions.
“Malaria, HIV, and most recently Ebola in Africa have been the focus of many local and foreign health care initiatives,” Babalakin says. “However, the incidence of cancer is rising on the continent, and it is important that we take steps toward cancer control.”
While Ebola and HIV tend to take over the headlines, according to a report in The Economist, cancer kills more people in poor, developing countries than AIDS, malaria, and tuberculosis combined.
For Seun Adebiyi, who cofounded ARA with Babalakin and who also lives and works in New York City, the problem hit even closer to home when, a month after graduating from Yale Law School six years ago, he was diagnosed with cancer and struggled to find a bone marrow donor. Unlike Uche, he managed to find one in time, an odyssey that was chronicled by The New York Times.
“Fewer than 17 percent of black Americans who need a lifesaving transplant ever find a donor,” says Adebiyi. “This is partly due to genetics—people of African descent are very genetically diverse, making it difficult to find a perfect match. Another contributing factor is the lack of black donors on registries—fewer than 7 percent of registered donors in the U.S. are of African descent. Given that one’s chances of finding a donor are highest within one’s own ethnic group, you can appreciate the urgent need for more black donors.”
As Adebiyi points out, Nigeria is an ideal place to create a bone marrow donor registry, as there are more than 170 million people and over 400 ethnic groups in the country.
“By recruiting donors from Nigeria, we will increase the diversity of the international donor pool and make it more likely for people of African descent around the world—including here in the U.S.—to find a lifesaving match,” says Adebiyi. “In fact, the majority of transplants now occur between patients and donors in different countries.”
ARA’s first big bone marrow donor registry drive is on Monday, Dec. 21, at 1261 Adeola Hopewell Street in Lagos, Nigeria. The organization is partnering with Delete Blood Cancer to recruit 2,000 people on the bone marrow registry.
“I think it’s very important that young people get involved in this issue,” says Babalakin. “Everyone I know that has passed away from a type of blood cancer, including Paul Uche, were young Nigerians. This disease is affecting young people in alarming ways. At some point, young Africans and those of African descent need to understand that this issue is a major concern for all of us.”