Bone marrow hero: A lifetime devoted to medical advance

Professor Ernette du Toit, it seems, isn’t quite prepared for all this attention surrounding her retirement. She’s apologetic about pausing to check the facts and figures; seems a little relieved to hear she’s not being broadcast. Yet she doesn’t speak like someone on the verge of retirement at all. If you knew nothing about her, you’d probably expect her to go on for years.

But she’s paid her dues. She’s just shy of her 80th birthday. She co-founded the South African Bone Marrow Registry in 1991, after working in the area of transplants for some time.

“I was in the right place at the right time,” she says. “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.)

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 Prof du Toit. Even within families, only 25-30% of patients find matching donors. The remaining 70-odd percent 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 24-million 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.

The hit-and-miss nature of bone marrow donation makes it rather a hair-raising affair. First there is the gamble of actually finding a match. Then there is the fact that not all donors who are on the registry and are called to donate actually go through with it. According to the Institute for Justice, a significant number cannot be located or have a change of heart when approached. Those who can be located and still want to donate then have to go through a battery of tests to ensure they are completely healthy and that donation will not further endanger the patient (all of which is also extremely costly, especially in foreign currency).

“We had an awful occurrence where a donor, at the last moment, contacted us and said, ‘No, I’m not going to donate’,” relates Du Toit. “It was for personal reasons between him and his wife. This is why we always say the family must be involved from the start. At the last moment she did not want him giving his cells. The patient on this side had already been treated and was waiting. It was so desperate that the doctors gave the patient some transfusions, and ultimately the patient died.

“The donor did eventually donate because he and his wife settled the issue, but it was too late.”

Assuming this kind of tragedy does not occur, the patient is prepared for transplant through aggressive treatment, such as radiotherapy or chemotherapy, to kill all their diseased cells. They then have a very short time in which they can survive before a transplant – a maximum of two to three weeks. The donors, for their part, have to undergo treatment to stimulate the production of extra stem cells, which, once harvested, can only survive up to 72 hours.

Couriers who transport the cells are hand-picked. They cannot drink or take drugs; they must be highly responsible. If they visit the restroom, the bag goes with them – it cannot be bumped or damaged in any way. Cell deliveries have survived tornadoes, political disasters, detours, and all manner of other crises. One courier was sent on a detour from New York via Paris; she arrived and had to talk her way through customs without a Schengen visa. But the cells were delivered.

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 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.” DM

Photo: Professor Ernette du Toit (Photo by South African Bone Marrow Registry)

NB: If you would like to become a donor, visit sabmr.co.za or contact the Sunflower Fund at 0800 121082.