“It was a nice and hot day, there was this breeze. But for me, it was a cold front. That’s how bad it was. And already I was now experiencing AIDS symptoms,” Nombuyiselo Mapongwana (58) recalls from the living room of her Soweto home. 

In 2002, five years after she was diagnosed with HIV Nombuyiselo was invited by a local pastor to speak at the church’s World AIDS DAY event. 

On the day of the event, Nombuyiselo was very sick. 

She had lost a significant amount of weight, experienced night sweats and had a worsening skin disorder that left her with an ashy, grey hue. 

“I was no longer just HIV positive. I was now living with AIDS.” 

The realisation that there was no treatment for her condition sent Nombuyiselo on a spiral. At this stage, civil society through the Treatment Action Campaign was embroiled in a legal battle with the government to introduce a national programme for the prevention of mother-to-child transmission of HIV.  Antiretrovirals (ARVs) were not available in the public sector. 

Out of sheer desperation, Nombuyiselo started consulting different traditional healers. She would be given various concoctions, each with its own set of dosage and usage instructions. These included taking several baths a day using the different soaps and mixtures she was given. She reached a breaking point when she found herself curled up on the couch with severe stomach cramps, asking herself ‘why’, as none of the concoctions she’d been given were helping.  

“I took the meds, and I threw them in the drain and then discarded the containers. I realised that I was very close to death and that I needed to deal with this thing head-on.” 

She quit her job at a publishing company to focus on her health. 

“Now, I’m sitting on hope. My survival hinged on supplements and Bactrim, a broad-spectrum antibiotic because there was no treatment available to people like us,” she says. 

“There was treatment, but for people with deep pockets. If you were like me, I had just quit my job, there was no treatment.”  

Nombuyiselo’s health deteriorated rapidly. By February of 2003, she wrote her obituary. She also wrote detailed instructions to her family for her funeral. 

But seeing a friend battling cancer gave her the resolve to live. 

“That’s when I decided to live. I was not going to die.” 

South Africa has made massive progress in the fight against HIV. The country has also seen a dramatic decrease in AIDS-related deaths from an estimated 150 000 in 2000 to around 50 000 in 2023. The cornerstone of this progress has been the roll-out of the state-funded antiretroviral programme, which was introduced after years of aggressive advocacy led by the Treatment Action Campaign, of the 2000s.  

Today South Africa has the biggest HIV treatment programme in the world with around 5.4 million people on ART. 

“We’ve had huge strides, but we’re not out of the woods yet because the gains are quite fragile. But we should celebrate what we’ve achieved,” says Professor Maryam Shahmanesh, Director of Implementation Science at the Africa Health Research Institute. 

But these gains were not cheap. It’s estimated that the government’s refusal to provide ARVs during Thabo Mbeki’s presidency led to 330,000 preventable deaths. 

In March of 2003, Nombuyiselo’s friends and family decided to put some money together to buy her the life-saving medication she needed. A private doctor gave her a prescription for combivir, which was a fixed-dose combination of the ARVs lamivudine and zidovudine. The medicine has since been discontinued. But at the time, one month’s supply cost R1370. 

“That was just one bottle. How in the world was I going to get a lifetime supply of these medicines? Those are the things that used to frustrate me about our government. They are sitting there dilly-dallying, having these discussions about us without us. I don’t know if they lacked political will, or what.” 

Around July 2003, Nombuyiselo eventually got access to ART through a private donor who saw her story in a national newspaper.

“The side effects were severe. One of the drugs made me hallucinate. But I got used to it with time. We used to drink these things twice a day, now it’s once a day. I used to take 5 ARVs, plus supplements a day,” she recalls.

“By October I was doing well on treatment and started speaking to mineworkers about HIV treatment. Today I’ve been on treatment for 21 years. In those years I’ve defaulted a number of times, but I’m still on first-line treatment, that’s the important part. I’ve had my fair share of challenges. There was a time when I felt like ‘Flip, I’m leaving this thing’.”   

In 2018 she migrated to the state-run ART programme, where she became one of around 4.6 million people on treatment. 

The window to reach the UNAIDs goals of ending HIV by 2030 is fast approaching. The targets are 95-95-95: that 95% of people with HIV know their status; that 95% of those be on ART; and that 95% of those on treatment be virally suppressed. 

“With regard to the second target there is still a gap of those not on treatment that needs to be reached as well as ensuring that those on treatment remain on treatment or restart treatment,” says Professor Adrian Puren, Executive Director of the National Institute for Communicable Diseases.

 “While the treatment programme for adults has its success the more challenging area is that of paediatric HIV management to ensure that children are on treatment and remain on treatment and virally suppressed. Access to affordable long-acting regimens will be of significant benefit in terms of increasing numbers on treatment and sustaining compliance.” 

Road ahead

Puren adds that data shows a shift towards more older people living with HIV. 

“It is essential to think about the integration of services not only for infectious diseases but for key chronic non-communicable diseases such as cardiovascular disease and diabetes. Also, mental health needs to be paid attention to,” says Puren.

It is time for the country to ramp up its HIV response. To really reap the full benefits of treatment, Shahmanesh argues that testing has to be ramped up and treatment started quickly. 

This is a strategy recognised by the government as well. During the official World AIDS Day event at the weekend, Deputy President Paul Mashitile announced a drive to “tracing 1.1 million people living with HIV and linking them to treatment between today and December 2025. Linking this 1.1 million people to treatment will enable us to reach the UNAIDS targets of 95-95-95,” he says. 

But Shahmanesh warns that treatment alone won’t be enough to curb the epidemic. “We need to focus on prevention alongside treatment.” – Health-e News