Despite contending with cultural, societal and religious beliefs that can deter people from registering as donors, the South African Bone Marrow Registry (SABMR) still boasts more than 73 000 donors on its register, although it is in the market for many more.
The registry is commemorating 30 years of existence, during which it has facilitated more than 550 bone marrow transplants since 1991.
Bone marrow transplants — or “stem cell” transplants — might be the best chance of recovery for patients with blood disorders. According to SABMR chief executive Dr Charlotte Ingram, an estimated 4 000 new cases of blood disorders such as leukaemia and lymphoma occur in South Africa each year. And finding matching tissue types to conduct the bone marrow transplant is the difficult part.
The likelihood of finding a matching tissue type for a patient in need of a bone marrow transplant outside their family is one in 100 000, or, as Ingram says, “like finding a needle in a haystack”.
For patients with unique tissue types, it becomes even harder.
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That is why “the more donors we have across racial demographics, the greater the likelihood of a match and saving a patient’s life,” says Ingram.
The SABMR added 1 525 new donors to its registry in 2020 but lost 1 763 others, mainly due to some donors reaching the cut-off age of 45 years (1 177), while 282 could not be traced and 106 had emigrated.
An international marrow registry makes it possible to connect donors to recipients across borders.
The SABMR is the only accredited member of the World Marrow Donor Association in Africa, enabling it to collaborate with 70 registries worldwide to search for compatible stem cell donors. Countries such as Germany, Russia, Spain and Cyprus have donated stem cells to South Africa, while SABMR donors have helped patients in Sweden, England, France and Austria, among other countries.
Donating stem cells simplified
Ingram says the SAMBR plays an integral role in the donation process. “We facilitate and improve access to transplants, conduct research, educate and support patients and physicians. From the moment a physician contacts us for a donor to the safe delivery of the cells to a patient, we are there every step of the way,” she said.
Bone marrow transplants are now routinely carried out worldwide since the first world register of unrelated stem cell donors was established in 1988.
“Back in the 1950s, bone marrow transplants could only be done when the donor and recipient were related. The chance of finding a match within your family is 30%, whereas the other 70% will have to look to a stranger [a matched, unrelated donor],” Ingram said.
The SABMR facilitated the first unrelated donor match in the country in 1997.
Nowadays, bone marrow transplants are more common and techniques have advanced to nonsurgical and noninvasive procedures — meaning donors can return to their normal day-to-day activities within hours.
In 2018 SABMR simplified the collection of DNA samples by launching an online platform where it introduced buccal swabs, through which it collects DNA from cells inside a person’s cheek for initial tissue typing.
The most common method of extracting bone marrow is through a peripheral blood stem cell collection, and not through drilling into bones, as is the popular misconception.
In very rare cases, Ingrim said, marrow can be collected through the bone in a procedure performed under general anaesthetic.
According to Ingrim “cultural and religious beliefs, largely due to a misunderstanding of religious views and ignorance of the donation process” are some of the biggest deterrents to potential donors.
Another is the people’s mistrust in medical procedures, as well as a lack of awareness about how transplants can save lives.
Perhaps the biggest misconception is that the procedure is painful, says Ingram, adding that this could not be further from the truth.
“Five days prior to the collection of the stem cells, a donor receives a series of five injections which stimulates the bone marrow to produce extra stem cells, which are now found circulating in your blood,” she said.
Then follows a non-surgical procedure where “blood is removed through a needle in one arm, passed through an apheresis machine that collects stem cells, and returned through a needle in your other arm”.
Last year, South Africa became the second country globally to allow people as young as 16 years to become stem cell donors, down from the previous minimum age requirement of 18.For more information on bone marrow transplants and becoming a donor visit the South African Bone Marrow Registry here or read its brochure here, or email [email protected]