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A large chunk of our reporting focuses on HIV. Since the launch of Bhekisisa in 2013, we’ve covered HIV in-depth — from the impact of the virus on former president Nelson Mandela’s family to the advances in antiretroviral treatment and anti-HIV pills and injections. We’ve also looked at the impact of inequality and discrimination on the spread of HIV, the link between gender-based violence and HIV — and ways to fix it.

HomeArticlesWhat happened to HIV activist Zackie Achmat?

What happened to HIV activist Zackie Achmat?

  • Zackie Achmat was one of the most vociferous voices against former president Thabo Mbeki’s HIV denialism in the late 1990s and early 2000s. 
  • Achmat declared his HIV status publicly in 1998 and refused to take treatment until former President Nelson Mandela promised to confront Mbeki.   
  • Achmat now lives in downtown Cape Town, fights state capture and believes nonprofits should change their funding model. 

Zackie Achmat asked if we could meet at Deluxe cafe on Cape Town’s Church street, an area in which he is often spotted walking with a slender dog. The original plan had been to meet at his downtown apartment, but when asked for his address, Achmat had sent pictures of manicured lawns and statuary, all shot in the Company’s Garden, the founding of which by Dutch East India Company men set the fate of Cape Town, and the country. 

Was this a wry comment from one of the founding members of Ndifuna Ukwazi (Dare to Know), which advocates for affordable housing in well-located urban spaces? Friends who know Zackie said it would be consistent with his politics, and his sense of humour.

He arrives with the little dog, wearing a breathable maroon running top and looking trim. His face remains youthful, and will always look this way, I suspect, but his hair has silvered.

UNITED: Achmat and his dog, Nawal, in front of Deluxe cafe in Church street, Cape Town. (Jay Caboz, Bhekisisa)

“She tends to bark when strangers enter the home, so I thought let’s rather meet somewhere neutral, first,” says Acmat, giving the dog a pat. Achmat and Nawal — a qur’anic name meaning “gift” — are met by Zuki Vuka, an organiser for the civil society coalition #UniteBehind, who sits with Zackie at the end of Deluxe cafe’s bar, going over the strategy for the afternoon’s public protest against the collapse of South Africa’s railways.

“There’s a miniature train on the Mouille Point promenade, and we’re [#UniteBehind and the African Climate Alliance] going to be handing over a certificate of achievement to The Blue Train Park for having the only working train in South Africa,” says Achmat, who is set to receive the certificate himself, wearing a mask portraying the face of South Africa’s Minister of Transport, Fikile Mbalula.

#UNITEBEHIND: Achmat at the Blue Train Park in Mouille Point protesting against the country’s broken trains. (Sean Christie, Bhekisisa)

It’s yet another subversive stunt from the man who, in 2002, smuggled Brazil-made generic antiretrovirals into the country to protest the government’s Aids denialist policies, and then invited the media to meet him at Cape Town International Airport.

In 1998, Zackie and a handful of others had launched what would rapidly become one of the most prominent HIV-advocacy movements in the world, the Treatment Action Campaign (TAC). He had already been an activist for over two decades by that point, starting in 1976 when he participated in the student uprising by setting fire to his school. But in the mid-1990s and early 2000s Achmat applied his struggle activism skills to fighting for access to HIV treatment and became one of the most vociferous voices against former president Thabo Mbeki’s HIV denialism. Mbeki denied (and still does) HIV as the cause of Aids and, as a result, refused to authorise policies that made HIV treatment, in the form of antiretroviral drugs (ARVs), available in the public health sector.

TREATMENT FOR ALL: Achmat is one of the founders of the Treatment Action Campaign that became famous for its sharp slogans. (Jay Caboz, Bhekisisa)

Achmat, who declared his HIV status publicly in 1998, became famous for refusing to take ARVs obtained from the private sector until the state made it available to everyone for free. It took former president Nelson Mandela to visit him at home in 2002, where he asked Mandela to confront Mbeki with his policies, to get Achmat to take treatment

Achmat and his activist colleagues finally took the government to the country’s highest court in 2002 when the state was ordered to provide all HIV-positive pregnant women with a drug that prevents mothers from transmitting HIV to their babies.

ARVs finally became available at no cost at state facilities in 2004.

From no treatment to ten pills a day

Achmat is arguably his generation’s most prominent social justice advocate, although he has been less visible in recent years.

“Don’t be deceived, I’m at work,” Zackie smilingly cautions.

He is mostly focused on state capture at the Passenger Rail Agency of South Africa (Prasa), and says he has read, “over 100 000 pages of reports in the last few years, detailing how corruption and incompetence at the parastatal has caused the destruction of the rail lines, including the theft of 500 coaches a year, if you can believe that.”

We head for his home. It’s a fine September morning, and inner-city Cape Town’s traffic-free boulevards are busy with pedestrians and hawkers. A woman, sitting with her legs out in front of her, sings gospel refrains in a strong tenor voice.

“I love walking the city centre — we’ve already walked eight kilometres today,” says Zackie, stopping suddenly to take out his cell phone. “Look at this.” It’s a message from Graeme Meintjies (the deputy head of the University of Cape Town’s health faculty’s department of medicine), his heart doctor, giving positive feedback following recent test results, and commending Zackie’s regime of daily walks.

DOWNTOWN: Achmat lives in Cape Town’s city centre and takes daily walks with his dog, Nawal. (Jay Caboz, Bhekisisa)

Achmat’s health has been a matter of public interest since he publicly declared his HIV-positive status two decades ago. Today, managing his HIV infection is simple and routine.

“I take seven pills in the morning and three at night. Watching my cholesterol after my 2005 heart attack is harder work, and the most difficult thing to manage by far is my depression,” Zackie says, his face unexpectedly breaking into a smile when he recognises a man walking over from the direction of Adderley Street. They hug, and after a short discussion hug again.

“We worked together at the Labia Theatre on Orange Street many years ago,” Achmat says. “He was the longest serving projectionist. His wife was the cashier. I was an usher. I’m not sure if he and his wife stayed together but he just informed me that she died recently.”

Aids conferences should be transformed

Achmat lives in an open plan apartment in a building “surrounded by bloody Clicks pharmacies”. The door to his place is open, and two colleagues are at work at a large table in the kitchen area. The bed is unmade — Nawal quickly assumes her place on it. “They told me to tidy up,” Zackie says, pushing aside a stack of papers on the table and exposing two Salman Rushdie novels. Possibly triggered by the memory of the recent stabbing of Rushdie (by a 24-year-old who had at best read a few paragraphs of Rushdie’s novel Satanic Verses), Zackie says, “We’ve lost sight of the bigger picture, you know.”

“We?”“Nongovernmental organisations, movements. Ask any organisation working in South Africa today: why is Ukraine critical for us, and for everyone? Some might say, because it pushes the prices of food up, and it’s important to understand supply chains and all of that, but the most important thing is missed, and that is the possibility of our extinction.”

COFFEE CONVERSATIONS: “We’ve already merged HIV and TB care in clinics and hospitals, yet here in South Africa we have separate conferences for each disease.” (Jay Caboz, Bhekisisa)

Achmat’s analysis of how local movements became inward-looking and ineffectual is multi-faceted, and he sets it out with the ready erudition of someone who has been writing about such things after hours. He begins with healthcare, and what he sees as “the failure of the miniscule amount of activists that we have working in health” to understand the COVID-19 pandemic as a harbinger of a new normal — “a condition where emergencies such as pandemics and climate change disasters are not exotic happenings but things occurring at home on an ongoing basis, requiring a complete reorientation of emergency healthcare, and a corresponding reorientation of activism.”

He believes the biannual International Aids Conference should be transformed into an infectious diseases and emergencies conference, and that the infectious diseases bodies need to merge with the HIV organisations.

“The separation is no longer sustainable or tenable. We’ve already merged HIV and TB care in clinics and hospitals, yet here in South Africa we have separate conferences for each disease. It’s hubristic, and a waste of money.”

Non-profit funding creates class differences — we need membership models

Perhaps anticipating the obvious follow on question — where did South Africa’s movements lose the path? — Achmat begins paging through a thick file of TAC documents.

“Here it is,” he says, unclipping a copy of minutes from an early TAC Western Cape branch meeting: “Financial report,” he recites. “We received R2 500 from Johannesburg. We received R320 in cheque donations. We received R200 in cash donations. Students contributed R300. We have about R1 400 left for volunteers and the demonstration. 

That’s it, that’s how we were operating then,” Achmat says. explaining that the TAC’s total budget in 1998 was R15 000. In the second year it was R200 000, and by 2007 the organisation was spending R30-million a year.

“Funding undermines organisations,” he argues, and his colleagues smile knowingly — a familiar hobby horse is being mounted.

“It turns us activists into bureaucrats, and I use the word ‘us’ because I wasn’t excluded from that process. It pushes up salaries, creating a class of people who are different in status from their comrades and communities that they organise, leading to an inevitable conflict,” Achmat says.

The alternative funding model he has in mind hearkens back to the approach of the Marxist Workers Tendency of the African National Congress, which Achmat and other early TAC leaders belonged to.

“In the Tendency, members were the ones who contributed. If you earned over R10 000 a month, you had to give a third of your salary. Over R20 000, and it was 50%.”

AERIAL VIEW: “Go anywhere in the world, and you see that working-class children don’t have the knowledge of how a computer works, or any sense of the cultural inheritance of the world.” (Jay Caboz, Bhekisisa)

The second part of his proposed funding model envisages trade unions giving a percentage of the dividends they get from their investments to movements. “The unions have an enormous amount of money, and if they do this, they will spend more than all the donors in the country, including the overseas donors. Similarly, if the churches and mosques gave 5% of their income for food security work, or for creating jobs for renewable energy, and stuff like that, we’ll flip the model entirely. It would mean the public would contribute.”

These ideas aren’t new but the idiom in which Achmat communicates them — outraged without being shrill; irreverent without slipping into poor taste — compels attention. When he starts talking about how progressive political space has been captured by the middle and upper classes, I don’t want to miss a word.

His biggest concern, he says, is what he terms “the dispossession of working-class children of knowledge that is social property.

“Go anywhere in the world, and you see that working-class children don’t have the knowledge of how a computer works, or any sense of the cultural inheritance of the world. 

“In our country, slavery, colonialism and apartheid has added different and dangerous layers of dispossession, and we aren’t addressing it. From our universities we Tweet, Facebook and TikTok in what the poet Percy Bysshe Shelley called a wilful exaggeration of our own despair, and that undermines the possibility — not the possibility, the damn necessity — of creating movements that include everyone we can possibly get into them.”

The persisting trauma of fighting HIV denialism

Achmat folds and refolds one of Nawal’s poo bags. He sees me watching this performance and puts the bag down, relaxes his voice.

“I’m just so grateful that we didn’t have all of that shite [social media] during the Aids fight, because the battle against the HIV denialists would have been a thousand times worse. You would have had Thabo Mbeki’s acolytes — the Ronald Suresh Roberts, not to mention the San Francisco mad ones — trolling one’s every utterance. It would have been a nightmare.”

There is another problem, “quite close to home — close to the bone”, and before he gets into it, Zackie asks his colleagues for the room. They duly close their laptops, pack their things and leave. Nawal sees them out with a few proprietary barks.

“Something we have not recognised and dealt with in our country in relation to HIV is the post-traumatic stress disorder among activists who dealt with death on a daily basis. It was a war without bullets — the government had declared civil war on its own people,” he says, adding quietly that he did not speak about HIV for almost 15 years, and found he couldn’t wear his HIV-positive t-shirt because it felt as if the phrase had been burnt into his body.

WAR WITHOUT BULLETS: Achmat says HIV activists who fought HIV denialism are still traumatised because they dealt with death on a daily basis. (Jay Caboz, Bhekisisa)

“I was going through a really bad depression in the early days of the TAC and I hadn’t seen a psychiatrist or anything, so my doctor at the time started insisting that I write down my dreams, and I did,” says Achmat, dream journal in hand. He begins to read his decades-old, looping handwriting. The narrative relates to a friend of his sister, “a gay man, who was carried to the grave by lesbians, because his own family shunned him even in death”.

The dream goes on but Zackie stops and says, “When I read it now, I realise that in the unconscious of every activist and every person with HIV, this was going on, and as a result so many of us left the movement, and the institutional memory of that time effectively dispersed. 

“What people remember today is what we want to remember. Nobody is interested in meticulously researching what it actually took to build a community-based organisation that was also an international organisation.”

Zackie says he is only now recovering, and he talks and moves like a person somewhat reprieved from heavy burdens. Our conversation has run on, and the Prasa protest is almost upon him. He picks up a printout of the transport minister’s face, confronts it and smiles mischievously.

“I still have to cut out the eyes.”

Sean Christie is a freelance journalist and author.