National heroes who fought for ARVs
South Africa’s pioneer Aids activists: ‘Every citizen of South Africa should know their names.’
Médecins Sans Frontières last week marked 20 years since the group arrived in South Africa and set up a clinic in Khayelitsha, Cape Town, to provide HIV services to people living with HIV/Aids. One of the first doctors to be recruited to work at the clinic, Hermann Reuter, recounts a recent journey back to Khayelitsha to track down some of the pioneers of Aids treatment.
I had forgotten how hot and windy the Cape Flats can be in summer; how the winds draw up the isthmus sands to pepper the face and blast the sides of homes and car windows.
We – Sindiswa Godwana and I – were walking through the dunes of one of the unplanned settlements trying to track down Nontsikelelo Zwedala, one of the first people I initiated on antiretroviral drugs almost 20 years earlier.
Sand was squeaking in our shoes and our faces were dusty. Several times I verged on giving up, but Sindiswa was determined that we would find her, and we kept on.
This was November 2019. In the preceding months I had been writing up memories of my years in HIV care – mostly the period from 1999 to 2006, when I was an active member of the Treatment Action Campaign (TAC) and subsequently working with Doctors Without Borders South Africa (MSF). In writing up these stories it was my sincere wish to recognise the value that certain people had brought to my life and practice as a doctor, while contributing to the broader struggle to manage the HIV epidemic in Africa.
Tracking down my first patients had proved challenging, though. After 15 years of working in HIV/TB programmes in Khayelitsha, Lusikisiki, Eshowe, Ethiopia and Swaziland, I had, in 2015, moved into a different field of medicine – managing people with substance use disorder. I started a new life in the city of George, lost contacts and lost touch.
If there was one person who could help, I knew it was Sindiswa – who I had reconnected with in 2018 while visiting Mandla Majola – for many years the moving spirit behind the community activities of TAC in Cape Town.
In her garage in Gugulethu, which doubled as the HQ of the social movement she founded, Movement for Change and Social Justice, I saw that Sindiswa had kept in touch with many people from the TAC in Gugulethu and Khayelitsha, where she had been a treatment activist in the first decade of the century.
Her own life had not been easy. Since being diagnosed with HIV and initiated on ARVs in 2000, Sindiswa had continued taking her treatment and had maintained an undetectable viral load, although years later she was diagnosed with breast cancer. She had undergone a mastectomy and required chemotherapy. For a time, she had counselling work with an NGO that supported cancer survivors, but she was unemployed now and living in a single-room shack in a backyard in Gugulethu.
Busisiwe Maqongo
Our first visit on that hot day was to the neighbourhood where Busisiwe Maqongo was said to live. We found her easily. She had recently started selling homemade mageu at the Mfuleni taxi rank, close to Khayelitsha.
She embraced me, lifting my feet clear off the ground. Full-volume sobs were in my ears – whether sorrow or joy I do not know. I do know that her reaction touched me deeply, and my own tears dripped onto her neck.
We sat chatting and drinking mageu for hours. Busisiwe and Sindiswa had been part of the same treatment support group in Langa, and, like Sindiswa, Busisiwe had been bold enough to agree to feature in a TV programme called Siyayinqoba Beat It!, later becoming a presenter on that show.
Matthew Damane
Next we went to find Matthew Damane. For a few years Matthew had worked with an HIV NGO, managing to build a house with an extra room in the backyard, but since losing his job he had been living in the backyard room, surviving off the rental for the main house.
Matthew was perturbed. He struggled to make ends meet, yet he was supporting relatives. He clearly needed to talk through his issues, but I wasn’t sure I was the right person to hear him, as I detected bitterness in his voice when talking about MSF and TAC.
“When a soccer star retires, the club keeps paying him a pension, but when we retired from TAC we got nothing.”
It was not just money that he felt robbed of, but a sense of belonging and self-esteem.
“Themba [to most service users, I was Themba], I was a hero. Matthew Damane
was always popular. When MSF wanted a speaker, they would ask for me. Now I am a nobody,” he lamented.
He told how, after 10 years of taking ARVs, he decided to stop, saying they brought him no more joy, no more fame; they just reminded him that he had a life-threatening disease.
Around this time support groups ceased to exist for all ARV users. With no organised peer support system to sustain him, Matthew had fallen into a depressed state. When I gave him the parts of my memoir describing his contribution to the struggle for ARVs, he said, “What you write about me is all true, but I am not sure you can use my name in your book. I have a new partner, and I have not told her about my HIV status.”
This was the same Matthew Damane who, in 2000, had gone to all 17 women he had slept with to disclose his status and advise them to have an HIV test.
“It was when dating this lady that I decided to get back on ARVs. I had heard that U = U,” he said.
U = U for undetectable equals untransmittable, meaning that a person who takes ARVs correctly – thereby preventing the virus from multiplying to the point where the virus is undetectable in their blood – cannot transmit HIV to a sexual partner, even when having sex without a condom. Matthew had not returned to his old clinic, however, fearing that the nurses would be mad at him.
“I went somewhere else and pretended I was a new patient, but the sister could trace that I had interrupted,” he said.
I found I was able to relate to Matthew’s story at a personal level. When the South African Government took ownership of the ARV programme after years of denial and lukewarm engagement, there was suddenly no great enemy to battle, and victories were harder to achieve. No longer the hero, I moved on.
Ever since Matthew and I talked, I have felt that to really ensure long-term treatment adherence for all chronic illnesses, the government needs to develop strategies that involve them in the promotion of health care.
It makes perfect sense that there should be a budget for this, given how much money is spent on managing the complications that occur when people have interrupted treatment.
I knew that MSF and the Department of Health in the Western Cape were busy with “Welcome Services” – an initiative aimed at ensuring that nurses are supportive when people return to clinics after a treatment interruption. I encouraged Matthew to see if he could not contribute to this campaign.
He phoned me two weeks later and said I could use his name in my writings. “I have discussed my status with my partner – she is okay with it.”
Nontsikelelo Zwedala
Now we were trying to track down Nontsikelelo Zwedala, who, years before, had called me asking me to bring ARVs to her home – she had forgotten her own pills at the hospital and did not want to miss a single dose.
Sindiswa was aware that Nontsikelelo
had moved from her old neighbourhood but was not quite sure where. Her neighbours informed us that she had moved to another informal settlement.
We drove deep into the specified informal settlement, and became stuck in a tiny lane behind a truck delivering soup at a soup kitchen. My patience grew thin, and my mood was not helped when we ran out of road and had to continue on foot. I cursed the sand and heat, and the government that allowed people to live in squalor in these coastal sand dunes. I was thirsty and hungry, agitated and ready to kill when we reached Nontsikelelo’s shack.
“Themba, I can’t believe it,” Nontsikelelo said, her voice croaking. “I can’t stand up properly,” she added half apologetically, “but sit down, and meet my new husband.”
Her first husband, Christopher Moraka, after whom the Fluconazole campaign of the TAC was named, had died in my care just before we could introduce ARVs.
Nontsikelelo had been in a taxi accident and had suffered a fracture of the fifth neck vertebrae. If the fracture had occurred higher up in the neck, her diaphragm would have been paralysed and breathing would not have been possible without a life-support machine.
After lots of physiotherapy, Nontsikelelo had learnt to walk again for short distances with crutches. After taking this in, and trying to picture how she managed the sand dunes
on her crutches, I asked about her ARVs.
“Themba, I defaulted. While I was in hospital, my husband lost his job. It was terrible. I was so depressed. After discharge from hospital, I stopped going to the clinic.”
“Was it not the difficulty of getting on your crutches to the clinic that made you interrupt ARVs?”
“No, I could have gone. But I was too depressed.”
“And now?”
I was contemplating when to ask about suicidal thoughts. If you wish to die, there is little point in taking ARVs. But she interrupted my question.
“I am on ARVs again. I got MDR-TB. I was admitted to Brooklyn Chest [TB] Hospital. They started me on ARVs again.”
“And your depression?”
“They counselled me at the hospital. The depression is better now.”
I felt humbled. I had been cursing having to walk the dunes in the heat with my able body, with a car waiting to take me to a shower, an ATM and a restaurant, but here with me in this corrugated iron shack was Sindiswa, disfigured by lipodystrophy and the amputation of a breast, who dedicated her life to nursing people in her community, despite being on cancer treatment and ARVs herself... and on my left, Nontsikelelo, half paralysed by a neck fracture, sick with MDR-TB, HIV and depression, yet gazing lovingly at her unemployed partner, who she had met at the ARV clinic.
Nontsikelelo and Sindiswa were complainants in the court case between the TAC and pharmaceutical companies GlaxoSmithKline and Boehringer Ingelheim, that saw their patents being ruled in contravention of the Competition Act of 1998. This paved the way for cheaper generics, saving our government millions in medicine costs and saving thousands of lives. Was there no way, I wondered, for our health or social services to get Nontsikelelo on the fast track for a government-built house, accessible by street and wheelchair?
Nobanana
The next morning I picked up Sindiswa from her home. We drove to another informal settlement. It was not long before we found Nobanana. She jumped up and embraced me. I had forgotten how delicate she was. After proudly conducting a tour of her two-room shack, Nobanana said that she had moved there after a robbery at her old community.
“Everyone knows I take ARVs, so the gangsters came to steal my Efavirenz. Some of the kids like smoking it with drugs.”
Nobanana is a musician, and she showed me her second CD. She did not have any copies to sell, but said that if I could take her to Gugulethu community centre she could ask the DJ to burn me a few. I said I would pay R400 to have a whole stack burnt – it was difficult not to be twisted around her little finger.
Nobanana drew an old flip folder from her display cupboard. It held her original treatment booklet, with information about ARVs, and a dosage tick sheet, forested with ticks.
“Themba, I do not tick any more but I can promise you, I have not skipped a single dose.”
I was stupefied. Eighteen years earlier, Nobanana was a homeless sex worker – the only person about whom we chose to hide the truth when presenting her social circumstances to the committee that approved the first 180 patients for treatment with ARVs, for fear that they would reject her. If I had been forced to name one person I thought would not stick with ARVs, it would have been Nobanana.
Nomandla Yako
The one person we did not see was Nomandla Yako, as her husband did not want her to disclose her HIV status publicly. This saddened me. Nomandla and Matthew Damane had gone to Brazil with [TAC founder] Zackie Achmat to bring back the first batch of generic ARVs for the MSF treatment programme.
When I returned to Cape Town in June 2020, I received the following WhatsApp: “Nomandla passed away this morning from Covid-19-related complications. She was at Groote Schuur Hospital since Monday.”
I went to her house and met her husband and close family. I learnt that Nomandla had worked as a counsellor at the Red Cross Children’s Hospital in her last eight years, supporting adolescents with HIV to stay on ARVs. She had developed renal failure some years ago, and fell ill after becoming infected with the coronavirus. The doctors were planning to initiate her on peritoneal dialysis, but she passed away before this was started.
Nomandla’s death was reported by several media, and the family said they did not mind her portrayal as a person who had been living with HIV, but ironically had not wanted anyone to know about the Covid-19.
Tamsanqa Yako, Nomandla’s son, did not
“What you write about me is all true, but I am not sure you can use my name in your book. I have a new partner, and I have not told her about my HIV status.” - Matthew Damane
“Themba, I defaulted. While I was in hospital, my husband lost his job. It was terrible. I was so depressed. After discharge from hospital, I stopped going to the clinic.” - Nontsikelelo Zwedala
“Themba, I do not tick any more but I can promise you, I have not skipped a single dose.” - Nobanana
remember me. He was only four years old when I started him on ARVs.
He told me he had finished matric the previous year and was now working at Shoprite. He was hoping to study, but did not have the money for it. He said his yearly viral load has remained undetectable throughout the years, thanks to the fact that he has never interrupted treatment.
His friend was standing with us and knew about his HIV. Tamsanqa did not mind me writing about him, as he thought it would help others. He gave the impression of a polite, well-rounded young man.
Conclusion
After so many years it was extremely rewarding to see these friends, comrades and service users again. When diagnosed with HIV in the pre-ARV era, many of them had been given a prognosis of two to five years to live. However, 20 years later they are alive and well, mostly on first-line ARVs, with other health problems emerging alongside the HIV.
Since these visits, the following ideas have inhabited my awareness.
Today there is far less advocacy around HIV; yet to encourage retention in care, the approach to HIV treatment needs to maintain its focus on involving ARV users in health-service decisions and activities.
Sindiswa Godwana, Busisiwe Maqongo, Matthew Damane, Nontsikelelo Zwedala, Nomandla Yako and so many others who fought for ARVs are national heroes. They symbolise the thousands of South Africans whose constitutional rights to dignity have not been met. Our transformation has achieved so much, yet in many ways failed so dismally.
They have done as much for our society as many of the leaders of the liberation struggle. Yet they have not been given the respect and acknowledgement they deserve.
The Department of Health owes them so much. Every citizen of South Africa should know their names.