Sangoma registers as stem cell donor to debunk cultural myths

Finding a blood stem cell match is one of the most challenging hurdles to overcome for people diagnosed with blood cancers, especially black Africans, given the small pool of donors in this population.

According to international non-profit bone marrow donor centre DKMS, for a patient of African descent diagnosed with blood cancer or a blood disorder, the chance of finding a matching donor for a potential life-saving blood stem cell transplant is less than 20%. Not only is the pool of black stem cell donors small (about 10% of donors in the registry) but conspiracy theories and cultural misconceptions about bone marrow donation discourage many from donating, resulting in patients struggling to find appropriate treatment.

SA traditional healer and founder of Sangoma Society, Makhosi Nomabutho,  has registered as a blood stem donor, hoping to influence other traditional healers, including her clients, to do the same.

“I do not want to be in the position that a lot of people find themselves in of not knowing where they will get a donor because there’s no amount of money or influence that can change a person’s diagnosis. Only more donors of African descent can.”

As a sangoma she knows the perceptions about stem cell donation, including the belief that donating takes away one’s strength.

“Many people are cautious about their blood and stem cells since these contain the essence of your DNA and can be used to siphon your strength or as part of a hex against you, so they might be reluctant to donate,” she says.

Nomabutho says there are people who navigate the healthcare space with a mistrust of Western medicine and “believe that blood and blood stem cell donation will mean that their power will be taken from them”.

“Theories like this emanate from the informal environment and thrive as people still recover from the effects of colonisation.”

With traditional healers having a significant influence on how communities respond to cancer and its treatment, Makhosi says respect for Western medicine among healers is crucial.

Traditional healers and doctors play different roles, with healers mostly dealing with the spiritual element of sickness.

“With [the majority] of South Africans consulting a traditional healer before seeing a primary healthcare practitioner, we have a responsibility to work holistically with them, which also means educating them and pointing them in the right direction to get treatment. Clearing up long-held yet misguided misconceptions standing in the way of their healing forms part of this too,” Makhosi says.

“Just as the work of traditional healers is God’s work so too is medical science. If someone with blood cancer or a blood disorder, for instance, were to come see me, I would try to help them access an oncologist so they can start the appropriate treatment. At the same time, I would work with them on the spiritual element of their disease,” she says.

Dr Candice Hendricks, a paediatric haematologist and consultant for DKMS Africa, said with only 0.4% of registered stem cell donors, SA still had a long way to go compared to other parts of the world.

“In the age group 15-59 years this increases to 0.7%. The bigger problem, however, is the majority of those who are registered are Caucasian while the majority of the population is of African descent. The proportion is more of an issue than donor numbers. We therefore need to focus on recruiting donors that can potentially be matched to all different demographic groups in the country,” she says.

“We are thus far behind. We are aware that the majority of patients of African descent, up to 80% of them, do not have matches and therefore cannot go on to transplant. It is a heartbreaking reality that we need to improve. Those who manage to proceed to transplant are the tip of the iceberg. We want to engage the potential donor public, to allay fears, provide information and encourage donor recruitment so more lives can be saved.”

She says once a patient is identified as a candidate for a stem cell transplant, tissue typing is done on the patient and siblings. Once the HLA (human leucocyte antigen) typing result is known and there are no sibling matches, a search is undertaken on local and international registries for a match. The process does not take longer than a day.

“Once someone is identified as a donor they will need to undergo medical tests to ensure they are fit to be donors. The process and time of donor work-up and cell collection is dependent on whether the donor is local or international,” she says.

Meanwhile, the Western Cape Blood Service said this week it needed donors of the O type blood group and “needs to collect 700 units of blood every day to ensure a sufficient blood supply”.

While it requires about a five-day blood stock supply in all blood groups, spokesperson Marike Gevers said there was only a three-day supply of type O blood.

Type O blood can be transfused to all blood groups and O+ can be transfused to all positive blood groups. “This is why the O blood group experiences more shortages as it is high in demand,” said Gevers.

“Blood stocks fluctuate daily due to supply and demand and therefore we need blood donors from all blood groups to donate blood every day. Our donor base is representative of the Western Cape demographics and we need donors from all races to donate blood.”

In an effort to boost supply the service will host a “one day — 10 malls — 1,000 units of blood campaign” on October 29  to collect 1,000 units of blood and recruit at least 100 new blood donors.

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