I had forgotten how hot and windy the Cape Flats can be in summer; how the gusting winds draw up the isthmus sands to pepper the face and blast the sides of homes and the windows of cars.
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 some 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 headquarters of the social movement she founded in 2016 (Movement for Change and Social Justice), I saw that Sindiswa had kept in touch with many people from the TAC in Gugulethu and in Khayelitsha, where she had been an engaged treatment activist in the first decade of the century, going on to build 21 TAC branches in the rural areas of the Eastern Cape.
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 had noticed a lump in her breast, which was ultimately found to be cancer.
She had undergone a mastectomy and required chemotherapy. For a time, Sindiswa 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.
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.
We spotted Busisiwe amongst men and women who were roasting meat on fires in halved oil drums. Moments later 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 I noticed my own tears dripping 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, she had been bold enough to agree to feature in a TV programme called Beat It – Siyanqoba, later becoming a presenter on that show.
Next we went to find Matthew Damane, who was busy preparing for an uncle’s funeral, but agreed to meet with us.
For a few years Matthew had worked with an HIV NGO, managing to build a small house with an extra room in the backyard, but since losing his job he said he had been living in the backyard room, surviving off the rental he received for the main house.
Matthew was perturbed. He struggled to make ends meet, yet he was responsible for 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 the self-esteem that comes with that.
“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 related how, after 10 years of taking ARVs religiously, he decided one day to stop, explaining that 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 – no one seemed to recognise their value anymore.
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 Mathew 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 is an abbreviation 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 very personal level.
When the South Africa government took sincere 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 make service users feel special; 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 something called ‘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, and become a “somebody” in his own eyes again.
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.”
Now we were trying to track down Nontsikelelo Zwedala, who, years before, had called me at night 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, as people there were apparently being promised government-funded houses and she wanted to get on a list.
We drove deep into the specified informal settlement, and became stuck in a tiny lane behind a truck delivering soup at a soup kitchen. I felt my patience growing thin, and my mood was not helped when we ran out of road and had to continue on foot, quickly becoming lost.
I cursed the sand and the heat, the rubbish 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 the door of Nontsikelelo’s shack.
“Themba, I can’t believe it,” Nontsikelelo said, her strained 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. A C5 fracture usually leads to partial paralysis of the arm and legs – if the fracture had occurred higher up in the neck, her diaphragm would have been paralyzed and breathing would not have been possible without a life-support machine.
I assumed that the modulation of her voice was due to the nerve to her vocal chords having been partially damaged. After lots of physiotherapy, Nontsikelelo had learned 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. She dropped her head.
“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.”
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 very humbled.
I had been secretly cursing the inconvenience of having to walk these dunes in the heat with my able body, with a car waiting to take me to a shower, an auto teller 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 the daily task of nursing people in her community, despite still being on hormonal 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 landmark court case between the TAC and the pharmaceutical companies, GlaxoSmithKline (GSK) 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 services or social services to get Nontsikelelo on the fast-track for a government-built house, accessible by street and wheelchair?
By now it was late and we decided to postpone other visits for the following day. Early the next morning I arrived at Sindiswa’s home to pick her up. She was still busy washing but invited me in. She was not ashamed of her body, and I tried to conduct myself in a way that would not arouse any self-consciousness. We drove to another informal settlement and parked the car in the shade of three eucalyptus trees.
It was not long before we found Nobanana. She jumped up, wrapped her arms around my neck and embraced me. I had forgotten how delicate and dainty she was. After proudly conducting a tour of her two-room shack, Nobanana explained 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. If I paid for more copies, she could sell them and improve her livelihood. 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, held in position on the shelf by a pink porcelain poodle. I thought she would show me a picture of a child or a partner, but it was her original treatment booklet, containing information about ARVs, and a dosage tick sheet, forested with ticks. In those days we did not have fixed-dose combination ARV tablets – we gave service users a pill box and the flip file Nobanana was now proudly exhibiting.
“Themba, I do not tick anymore but I can promise you, I have not skipped a single dose.”
I was stupefied. Eighteen years earlier, Nobanana was the clown of the clinic. She 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. I snapped some selfies outside, which I immediately posted to Sister Nontuthuzelo, who had worked with me at Site C clinic.
The one person we did not see was Nomandla Yako, as her husband did not want her to disclose her HIV status publicly. This left me saddened. Nomandla Yako and Matthew Damane had travelled 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 to assist in the MSF-run Covid-19 field hospital in Khayelitsha, 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, some of whom had come from the Eastern Cape. It was awkward, wearing masks and maintaining physical distancing, when we felt so united, mourning Nomandla’s death.
I learned that Nomandla had worked as a counselor 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 seriously 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.
“They should have said she died of renal failure,” a relative told me. But it was too late – the news was out and the family resolved to accept it.
Tamsanqa Yako, Nomandla’s son, did not remember me. He was only four years old when I started him on ARVs.
We went outside onto the street to have a private chat. Leaning against the fence he told me that 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 told me his yearly viral load has remained undetectable throughout the years, due 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.
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.
Correctly, MSF and the TAC always advocated a person-centred adherence model rather than an authoritative, directly observed treatment model, which means it is imperative that treatment users are empowered and given agency to truly be agents of their own wellbeing.
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. DM/MC
Hermann Reuter is a doctor and activist with a special interest in health care program development and training. He is Community-Based Education Coordinator for the University of Cape Town on the Cape Garden Route and of SAHARA.
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