Many Eastern Cape children infected with HIV at birth are developing AIDS-defining cancers as they reach adulthood, but HIV is unlikely to be the only driver of the what haematologists suspect is an inexplicably high concentration of blood cancers in the province.
This is according to Dr Neil Littleton, who is a specialist in haematology, the treatment of blood disorders including cancers affecting the blood, lymph nodes and bone marrow.
About 75 percent of all the lymphoma patients Littleton in the Eastern Cape sees are also living with HIV - and presenting with AIDS-defining cancers despite South Africa's antiretroviral (ARV) roll out.
He recently lost two HIV positive patients, a matric year boy to Burketts Lymphoma and a 16-year-old boy to Hodgkins Lymphoma. He blames the AIDS denialism of former president Thabo Mbeki.
In the 1990s, Mbeki and former Health Minister Dr Manto Tshabalala-Msimang delayed the rollout of the ARV, nevirapine, to pregnant HIV-positive women despite scientific evidence that showed the medicine could protect their babies from the virus.
In 1999, the Western Cape began piloting prevention of mother-to-child HIV (PMTCT) services, which would only become available nationally in 2002.
"Now, we have a whole bunch of teenagers who have got AIDS-defining diseases because of Mbeki," Littleton tells Health-e. "The child asks you, 'what did I do wrong?' meaning he's a virgin and he has HIV. I still don't know how to answer that."
While completing his specialisation in the cancer wards of the Western Cape some years ago, Littleton and other doctors began to notice that Eastern Cape cancer patients were filling up the beds at rates much higher than their Western Cape peers.
"There is no doubt that there are higher numbers of cancer cases, how high though we can't say."
After specialising, Littelton agreed to take up a position in the Eastern Cape on the promise that a haematology unit would be built in Port Elizabeth. Three years later, when this had not materialised, he and Cole Cameron founded the Aloe Igazi Foundation and began to lobby the Eastern Cape government.
If government would give them a ward in the Port Elizabeth Provincial Hospital, he and Cameron agreed to fundraise through Aloe Igazi to provide the specialist equipment for stem cell transplants that patients needed to survive.
"There is no doubt that there are higher numbers of cancer cases, how high though we can't say," said Cameron who helped Littleton raise money to buy and import not only special equipment for treatment but also a new elevator for the seventh floor ward that the Eastern Cape government allocated to them in the provincial hospital. While ward staff are Department of Health employees, Aloe Igazi helps support services through fundraising and advocacy.
Littleton is now one of only two haematologists in the Eastern Cape. To cope with patient demand, he works six days a week seeing public sector patients during the week and private sector patients on Saturdays.
Not a single haematologist works in Limpopo, the Northern Cape and or the North West provinces. These provinces refer patients to Gauteng or the Western Cape.
No one is sure how bad the Eastern Cape's cancer burden is and HIV alone is unlikely to account for the increased burden of blood cancers in the Eastern Cape. The lack of an updated national cancer registry, which is supposed to track cancer cases in the country, does not help. Oncologists also report that the province has a high rate of oesophageal cancer.
Aloe Igazi has partnered with the Nelson Mandela Metropolitan University to conduct a four-year study to track blood cancer rates in the Eastern Cape. Cameron hopes the information can be used by government to update its registry.
Coping with cancer
Treatment for patients involves either bone marrow or stem cell transplants. Stem cell transplants were not available in the Eastern Cape before Aloe Igazi. As part of stem cell transplants, stem cells are removed via a catheter inserted into either patients themselves or donors in several three-hour sessions. When patients are able to donate to themselves, they usually receive chemotherapy beforehand.
Once removed, the stem cells are given high doses of chemotherapy - higher than what could be administered to patients - before being transplanted into patients in the hope that they will kill other cancerous cells.
But lymphoma can also affect HIV-negative people. Yolanda Bukani was diagnosed with lymphoma last March after a biopsy of a lump under her arm showed it was cancerous.
"I cried and cried," said Bukani, who was in her final year at Rhodes University. "I was 23 years old and I just found out I had cancer."
Bukani completed her last year of university despite being on chemotherapy. She credits not only her family and boyfriend with supporting her but also Rhodes University, which let her complete assignments at her own pace and allowed her to take her final exams in a room alone in case the chemotherapy made her sick.
"Being sick teaches you a lot of things and how to be brave"
Bukani has finished her chemotherapy and received a bone marrow transplant. But she would have given up treatment altogether if it had not been for 16-year-old Vuyo Magxwalisa.
She met Magxwalisa, then 15 years old, on the day when she planned to tell Littleton that she was too scared to have the bone marrow transplant.
"I told Dr Littleton that I didn't want to go on anymore," she added. "I was just going to sit at home. He introduced me to Vuyo."
Magxwalisa had been diagnosed with aplastic anaemia in which her bone marrow does not produce blood cells. Although not a cancer, aplastic anaemia is often treated similarly with transplants and chemotherapy.
The soft-spoken teenager used her love of reading and writing to get her through the bouts in the isolation ward following her transplant from her six-year-old brother. Her advice to Bukani was: "You just need to find something to do. This will pass."
"I was like if a 15-year-old can do it, I can do it," remembered Bukani, who plans to re-enrol at Rhodes and complete her law degree.
Following transplants, patients like Bukani and Magxwalisa receive immune-blocking drugs to ensure that their bodies do not fight against the transplants meant to save their lives. This means they are very susceptible to disease and kept isolated in rooms fitted with special filters and double-paned windows to prevent germs.
To keep busy during her stints in isolation, Magxwalisa began keeping a journal on her laptop, which has become a constant companion. She still gets treatment at Aloe Igazi, spending long hours hooked to intravenous drips - her laptop propped open on the arm of the oversized chair and opened to homework or her journal.
"When I was in the isolation ward, all I did was make like I was at home - I wouldn't think that I was in a hospital faraway from home," she said. "I made it feel like home, and the nurses were so nice."
"Being sick teaches you a lot of things and how to be brave," she added. "There is chemo but you'll get through it and you will inspire the next person in the same situation."
- Health-e News Service
An edited version of this article first appeared in the 22 February edition of the Saturday Dispatch