Early in 2017, Unathi Mtengwane from Zeerust in the North West started experiencing severe fatigue. Initially, he thought it was just due to the daily pressures of life.
However, when he finally sought medical attention in March 2017, he was diagnosed with a type of blood cancer called T-cell acute lymphoblastic leukaemia.
T-cell acute lymphoblastic leukaemia (T-ALL) is a type of acute leukaemia that is aggressive and usually progresses quickly. It affects the lymphoid-cell-producing stem cells, in particular a type of white blood cell called T-lymphocytes, as opposed to B-acute lymphoblastic leukaemia (B-ALL) which commonly affects B lymphocytes.
"He got sick in January 2017," recalls Bomikazi Mtengwane (his wife). "We thought it was the flu but unfortunately the flu didn't go away."
Bomikazi says other symptoms started such as nose bleeds and when he did not get better, they consulted a doctor. When they received the diagnosis, she says the family struggled to make sense of it. Immediately after his diagnosis, Mtengwane began intensive chemotherapy and radiation of his brain and spine. By November 2017 he was in remission.
During a routine check-up in July 2021, however, doctors confirmed the cancer had returned and told him that he would need to undergo a stem cell transplant as soon as possible.
Before this could happen, he would need a stem cell donor who was a match (a match refers to a person who has similar proteins on the surface of certain of their blood cells).
Sadly, no family member was a match.
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Holding on to hope
Bomikaze says at the hospital they were told that there's hope provided he can get a stem cell transplant.
"Right now, my husband needs a stem cell donation for him to actually get [a] second chance in life," says Bomikazi. She tells Spotlight that people can register on the DKMS Africa website to donate, especially those that are between the ages of 18 to 55 and as long as the person is healthy.
"We would urge black people to register on the website because there are few black people that are registering. We are hoping that one day one person would be a compatible donor," she says.
Many challenges
If Mtengwane finds a donor, he will have to pay for the transplant himself unless he finds an organisation that can fund him.
Dr Theo Gerdener, the medical director and a haematologist at Alberts Cellular Therapy (a private practice) in Pretoria explains to Spotlight what a stem cell transplant would involve, should Mtengwane get a matching donor.
"This sounds like an operation but isn't an operation. We give really high doses of chemotherapy or radiotherapy, or radiation treatments to kill off all those malignant cells, or stem cells that have become cancerous in the bone marrow," he says.
He says that in Mtengwane's case, like in most acute leukaemia cases, they have to use another person's stem cells and that person needs to be genetically matched to Mtengwane. "Currently, that is where we are at the moment with him. He's receiving chemotherapy but we have not yet succeeded in finding a match." (For some conditions a patient's own stem cells can be used.)
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According to Gerdener, the ideal is to get first-degree relatives like brothers and sisters to be donors because there's a chance of about 25% to 30% that they will be genetically matched to the patient. When there is no first-degree match, Gerdener says they then go and look at the children or parents of the patient, but it's rare that they will be a match because they have different parents and not having the same biological parents dramatically reduces the chances of a match.
"Another thing we can do is go and look in the stem cell registry to find matches. There are local registries in South Africa and Africa, and they have donors. But often for African patients, we do not find donors because there are not many African or people of African descent registered to be donors," he explains.
"The biggest international registries are in Germany and the United States. So that's also a problem because most donors [there] are of European descent [and] are not genetically matched to our population. Even if we did find a match, there are still some issues in South Africa," Gerdener says.
What is funded?
The problem, he says, is that public healthcare provides no funding for international donors or unrelated donors so it is best to get a transplant from a relative because it's the cheapest type of transplant. However, there are organisations such as DKMS Africa, which, if patients find an unrelated local donor, will provide financial assistance.
"In private practice, it's a bit more complicated," he says. "One can use international and local unrelated donors, but only some medical schemes will fund those transplants, and some will not fund them."
Certain costs are involved in the stem cell transplant process, like harvesting or collecting the stem cells. "If it comes from overseas, it becomes more expensive because it needs to be shipped in within a concise period, typically within a day of collection, and all sorts of issues," he says, adding that some medical schemes refuse to pay any of those fees, so the patients have to cover it themselves.
"So the reality is that some medical schemes will pay for the costs of the transplant, but only if it's a local donor, even if it's unrelated but not international donors. In contrast, some will pay for international donors, depending on what that particular scheme can cover," Gerdener explains.
Outdated regulations
What further complicates stem cell transplants in South Africa is that the regulations to the Medical Schemes Act, which was promulgated in 1998, have not been revised for the past 24 years, Gerdener says. "In the legislation, it says that the Minister of Health in the Department of Health is responsible for reviewing the stipulations of the Act every two years, but they have not done that in 24 years." (In 2020 the regulations were updated to include COVID-19, but no wider review was done at the time.)
The medical schemes should be required by law to pay for this transplant as being "evidence-based medicine", but according to Gerdener, some schemes do not pay because the law is outdated. He says acute leukaemia affects roughly 1 in 100 000 people. "So it's not very common, but when it happens, it's severe for the patient and it's a matter of life or death. You either get to transplant, or you die."
Elsabe Klinck, a consultant at Elsabe Klinck & Associates, tells Spotlight that one of the problems is that for public sector patients, the guidelines say they are looking for family members to match, not individuals that are not family members and that, she insists, is a problem. "This means if somebody doesn't have a family match, they have no right to access healthcare because the medical scheme or the public sector won't pay," says Klinck.
"Neither in the public or private (health) sector do we have adequate legislative frameworks that are actually aligned with the reality of science today. You can't transplant from somebody who is not a family member," she says.
Klinck agrees with Gerdener that in terms of the Medical Schemes Act, the PMB list is supposed to be updated every two years because science changes. Those changes are supposed to be reflected in updates to the PMB list. Unfortunately, she says, it's not happening.
"It hasn't been done for many years. I think the last update was many years back. So, we've been sitting with everything lagging further behind and that responsibility lies with the National Department of Health."
According to Klinck, in South Africa, the problem is that there are laws, but the government is not following the regulations to implement those laws. "We need to lobby for it (law) to change. The Council for Medical Schemes (CMSA) is normally the custodian of the medical schemes. I think they need to start this process because the process normally starts with consultations," she says.
Who is responsible?
The health department did not comment when asked about the process of stem cell transplants and what government funds and what it does not fund. Health spokesperson Foster Mohale directed Spotlight to the South African Health Products Regulatory Authority (SAHPRA), saying they are the ones responsible for transplants. According to Klinck, however, this is not correct as SAHPRA does not deal with human tissue transplants or with treatment guidelines. "Both these matters are handled by the National Department of Health and this response speaks volumes in relation to the inability of the department to keep pace with scientific advances," Klinck says.
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SAHPRA sent Spotlight back to the department saying they are the ones in the right position to respond.
What the Council for Medical Schemes says
Spokesperson of the Council for Medical Schemes, Mmatsie Mpshane tells Spotlight that medical schemes are advised to consider factors such as the medical appropriateness of a stem cell transplant for the member's condition and the available good clinical evidence of the benefit of a stem cell transplant for the member when deciding whether to fund a stem cell transplant.
"The level of care available in at least three state facilities in two or more provinces is used to measure the basic care that should be available to members of medical schemes. Unrelated donors from local and international registries are available in state facilities, and thus the expectation is that the same care should be available in the private sector in South Africa," says Mpshane. If the stem cell is medically appropriate and is for a condition that falls under the Prescribed Minimum Benefit regulations, the expectation is that the medical scheme should pay for the transplant.
Meanwhile, in a fight against time, the Mtengwane family has reached out to DKMS Africa to help the family raise awareness and to recruit as many new blood stem cell donors as possible, especially those of Black African ethnic origin.
The Mtengwane family have already engaged their local community whom they say have been encouragingly supportive thus far.
DKMS Africa is a stem cell donor registry and has registered over 11 million donors worldwide. Anyone who is healthy and between the ages of 18 and 55 is eligible to register and if one is a successful match, the process of donating blood stem cells is as painless as donating blood, although it takes longer and some medicines have to be taken for a few days prior to the donation.
You can visit the DKMS website for more information.
