Lack of black stem cell donors

THE LACK of black stem cell donors has fatal consequences as most cancer deaths are among black South Africans, but only 10% are registered as stem cell donors.

The SA Bone Marrow Registry (SABMR) said that while most cancers deaths (about 60%) are among black South Africans, only 10% are registered as stem cell donors.

“This has devastating consequences,” said deputy director of the SABMR Jane Ward on Wednesday.

According to Ward, each year an estimated 4 000 new cases of blood disorders, such as leukaemia and lymphoma, occur in South Africa and for most patients the best chance of a cure is a bone marrow transplant, also termed a stem cell transplant.

“Only about 2.8% of black leukaemia patients referred to the SABMR, who require a stem cell transplant and haven’t secured a match within their family, are lucky enough to find an unrelated donor match. Sadly, the remainder go without a transplant and eventually succumb to the disease. Some of them are still babies,” she said.

The SABMR has access to the World Bone Marrow Donor Registry that has over 39 million registered donors, however, only a small percentage of them are black.

Ward added that it’s a worldwide concern causing a serious under-representation of ethnic populations in the global donor pool. She said much more awareness needs to be created among people of colour to de-stigmatise organ, blood and stem cell

donation as a whole.

“In the last four years, our black donor pool has only grown by 1%, which brings the total number of black donors on our database to 7 600. As a result, there remains a major shortage of donors to help black patients who need life saving transplants.”

Sibongile Jimlongo, a 26-year-old stem cell donor from Stellenbosch said people in the black community don’t talk enough about stem cell donation and that needs to change.

“Sometimes beliefs and culture stand between people and donating. Many people still don’t understand what the donation procedure entails and that it rarely requires surgery,” she said.

Jimlongo added that she believes there is still a lot of stigma, particularly among elders, that are against Western medicine and seek alternative healing, such as traditional medicine.

“There is a dire need for education and awareness,” she said.

According to Ward, the major barriers to stem cell donation were cultural and religious beliefs – largely due to a misunderstanding of religious views and ignorance of the donation process, lack of awareness that transplantation can save lives, the myth that donating stem cells is a painful and costly process, negative family and/or community influences and medical mistrust.

She said in order to mitigate these obstacles among black communities, the SABMR will be engaging religious and traditional leaders in the coming months to make more information available about the donation process and its positive outcomes.

“There’s no greater gift that you can give someone than the gift of life… The more black people come forward, the more lives can be saved in SA and other parts of the world too,” said Ward.