SA’s bone marrow registry pioneer retiring

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ErnetteIt’s perhaps hard to imagine, but 25 years ago there was no bone marrow registry in South Africa. Today, it’s still a costly and difficult procedure for those with leukaemia or other serious blood diseases to get life-saving treatment. Most often it’s a “military operation”, says the doctor who helped make it all possible, Professor Ernette du Toit. Marelise van der Merwe writes in a Daily Maverick report that just shy of her 80th birthday, du Toit is on the verge of retirement. She co-founded the South African Bone Marrow Registry in 1991, after working in the area of transplants for some time. van der Merwe quotes her as saying: “I was in the right place at the right time. I was working in the tissue typing lab for organ transplant, as a young doctor. The first heart transplant took place in 1967 – we did the matching and I was the second in command – and that gave me fantastic opportunities.

“That was a turning point in my life. I was sent all over the world. I learnt about transplants – heart transplants in particular – as a result of that involvement.”

One of her colleagues in Holland suggested that she study further, and she achieved her post-doctorate. (Her daughter, then aged five, would bring her drawings and say, “Mommy, look, I am also writing a thesis.” Today, she is a lawyer specialising in medical cases.)

van der Merwe writes that eventually Du Toit took over the running of the tissue typing laboratory, matching the tissues of all individuals who had transplants from those not related to them, and by 1991 she was approached by Professor Peter Jacobs (Haematology), who told her he wanted to do some experimental work, including a bone marrow/stem cell transplant. With the assistance of some of the laboratory staff, they began transplanting stem cells in rabbits, and the work expanded to humans, transplanting cells within families, because that was the easiest way to obtain a match. By 1991, the foundations had been laid to start transplants between unrelated people.

“That was a big challenge,” says du Toit. Even within families, only 25-30% of patients find matching donors. The remaining 70-odd% must search for an unrelated donor. Finding a match, whether among family or strangers, is up to chance. “It’s the luck of the draw,” Du Toit explains. “Every individual has about a one in 100,000 chance of finding a match in the general population. But some people never find a match and others find many.”

At the beginning, the South African Bone Marrow Registry (SABMR) had only a handful of employees, and the organisation was told to “join the club” – form a relationship with the World Marrow Association, in order to get donors from elsewhere in the world, which remains an essential part of the service. According to the SABMR;s data, approximately 24m donors are registered worldwide today in over 50 countries and over 70 separate registries. South Africa alone has about 74,000 donors – a comparatively small pool. “You can imagine how difficult it is to find donors from such a small pool,” says Du Toit. “It can only serve around 25% of our needs.”

A huge problem is the disparity between racial groups represented among patients and those represented among donors. Genetically speaking, one is more likely to find a match among someone of your own race group, but in South Africa, there is a critical shortage of black donors – only 4,000 – in comparison to the number of patients in crisis. This results in the need to get bone marrow abroad, which is more difficult, more expensive, and riskier.

Of course, this is a problem for patients of all races, who have a slim chance of finding a donor locally anyway. Ironically, despite the shortage of donors, the Bone Marrow Registry frequently receives calls from donors asking why they haven’t been called. According to US organisation Be the Match, donors have a one in 540 chance of being called to actually donate, owing to the slim chances of matches being found.

van der Merwe writes that du Toit, who began her career when few women worked full-time, has spent six decades as something of a trailblazer. She grew up on a farm in Montagu, having lost her father when she was just six weeks old. Her mother was a maths teacher; her older brother – her role model – studied medicine. “That first conference in New York, in my early 30s, was fantastic,” she says. “After the first heart transplant, sitting in New York with all the people who did heart transplants in the first year – that was very, very exciting, knowing we could save the lives of people who were condemned to death.”

Nonetheless, the South African Bone Marrow Registry was a humble affair at first. “In those early years we had certain regulations to conform to,” she says. “And we only had about three people in the office. It was a big learning curve. But fortunately there were fewer transplants. We had time to learn.”

To this day, the organisation does not receive government funding; du Toit and her colleagues scramble for finance. “It’s something that, as a medical doctor, you do not expect to do,” she says. “But it’s been a wonderful experience to see kids that were dying that are now 10 or 12, or are grownups – and doing well. One was a little boy who is now a lovely young man, and has just sailed round the world on a boat, as its captain. Knowing you have actually made a difference is wonderful. Most of the patients we see are desperately ill, and the chances of survival are very low. When a doctor phones us and says ‘We need stem cells’, we know it’s the end of the line. And it’s expensive.”

How expensive exactly, she can’t say, as it tends to vary. But, writes van der Merwe, just some of the costs include sending a courier to wherever the donor is – often as far as the US, Europe or South America; their accommodation and travel; running the series of tests to declare the donor healthy; checking for inherited disorders and viruses as well as their hospital stay; booking a backup flight for the courier in case of delays or other problems; cancellation fees for the backup flight, and follow-up health checks for the donor for the next 10 years. Add in the cost of any number of foreign currencies, and you’ll be adding quite a few zeroes to whatever figure you have in front of you.

Now, after decades of saving lives, Du Toit is ready to pass the baton. “I’ve got a wonderful feeling it will be quite a nice to do nothing,” she says. “My husband and I would like to travel some more, maybe look after my grandchildren. Life will be more family-centred. We will go to concerts, read, walk.” She pauses. “But I will probably keep touch with the laboratory.2

Full Daily Maverick report

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