While most cancer deaths (60%) are among black South Africans, only 10% are registered as stem cell donors.
“This has devastating consequences,” says Jane Ward, Deputy Director of the SA Bone Marrow Registry (SABMR).
“Each year, an estimated 4 000 new cases of blood disorders, such as leukaemia and lymphoma occur in South Africa. 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 goes without a transplant and eventually succumb to the disease. Some of them are still babies.”
Despite the SABMR having access to the World Bone Marrow Donor Registry that has over 39 million registered donors, only a small percentage of them are black.
Ward says it’s a worldwide concern causing a serious under-representation of ethnic populations in the global donor pool.
“The same attitudes and behaviours persist for organ and blood donations. Much more awareness needs to be created among people of colour to destigmatise 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 lifesaving transplants.
“The likelihood of people from certain ethnic backgrounds finding a successful match is a mere 37% compared to patients from European descent whose chances are 72%. Finding a match is highest among donors of a patient’s own ethnic group. But, even then, the odds of a match are one in 100 000. Ultimately, the more donors we have, the better the chances of finding a match. It’s a highly specialised process that can take weeks to months depending on the patient’s tissue type,” says Ward.
Sibongile Jimlongo, a 26-year-old stem cell donor from Stellenbosch says 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. When I came up as a match on the SA Bone Marrow Registy, I needed the approval of my grandmother as it’s just not one of those things that we do. The concept is completely foreign to most people in black communities. Once I explained what it entailed and that it could save someone’s life, without harming my own, she gave me her blessing.
“I believe there is still a lot of stigma, particularly among our elders, that are against Western medicine who seek alternative healing, such as traditional medicine, as a form of treatment, before they’ll go to a hospital. There is a dire need for education and awareness,” says Jimlongo.
Ward cites the following as major barriers to stem cell donation:
1. Cultural and religious beliefs – largely due to a misunderstanding of religious views and ignorance of the donation process.
2. Lack of awareness that transplantation can save lives.
3. The myth that donating stem cells is a painful and costly process.
4. Negative family and/or community influences.
5. Medical mistrust.
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.
She says anyone aged between16 and 45 can register. “All it takes is completing an online health history questionnaire, and then a cheek swab, which can be done at one of our depots, like Intercare or Pathcare, or a kit can be couriered to you free of charge. Once registered, your information is entered into the SA donor database and your cheek swab goes to an accredited testing laboratory. Your swab is tested, and then results are sent to us and uploaded to the SABMR database.
“If your name does come up during one of our searches, we’ll phone you to see if you’re still interested. If your circumstances have changed, you’re not obliged to say yes. If you agree to proceed, we will ask you to provide a fresh blood sample to confirm that your genetic typing matches the patient’s. Once we’ve confirmed a match, we’ll coordinate your donation from start to finish, at no cost to you. All you need to do is undergo a medical examination to make sure you are healthy enough to donate stem cells, have a short series of injections to boost the production of extra bone marrow stem cells, and then show up on the day of the donation, which can take place at the closest collection centre to you. If you require transport, we’ll cover the cost as well.
“Most donors donate through a process called peripheral blood stem cell collection. The same stem cells found in your bone marrow are also found in your circulating blood, and this process collects those cells instead. It is a nonsurgical, outpatient procedure, during which blood is removed through a needle in one arm, passed through a machine that collects stem cells, and returned through a needle in your other arm. During donation, which takes up to eight hours, most donors watch TV, work remotely, or even nap. An SABMR staff member is with you all day to make sure you’re comfortable and to look after your needs,” reassures Ward.
After donating, a trained SABMR courier will transport your cells to the patient’s transplant centre and the patient will receive the transplant. If successful, the patient’s body should start producing its own healthy stem cells.
“There’s no greater gift that you can give someone than the gift of life,” says Ward. “The more black people come forward, the more lives can be saved in SA and other parts of the world too.
“We are incredibly grateful to everyone who has joined the registry and encourage those who have joined to talk to their family and friends about their decision to spread the word,” she says.
The SAMBR needs 47 880 more people from black and mixed heritage backgrounds to join the registry. At any given time, more than 70 black patients referred to the SABMR are awaiting a match.
If you are thinking of becoming a donor you can sign up online at www.sabmr.co.za , contact the SABMR on 021 447 8638 or via email: firstname.lastname@example.org. Financial donations can also be made via www.sabmr.co.za/donate.