JOHANNESBURG — In South Africa, the fight against HIV/AIDS was a tough battle for early-days activists and social workers. They had to challenge denial about the virus while navigating a drastic democratic change from the white-minority rule to the Nelson Mandela era. Some activists are still at it, hoping to stem the disease in one of the worlds' most affected countries.
Facing a derelict building, former clinic manager Mary Crewe and her then co-worker Lucia Ngoma recall their fight against HIV/AIDS some 20 years ago. It began in a Esselen Street clinic in Hillbrow, one of the poorest parts of Johannesburg.
They were pioneers Crewe remembers. “When we started here, it was, I think, the first of its kind to look at how a city could respond to the HIV and AIDS epidemic,” she recalled.
She said her clinic team's main challenge was to convince public opinion that HIV/AIDS could affect anybody. “The epidemic at that stage was seen as a white gay Western epidemic," Crewe said. "And I think what we've learned very quickly in Hillbrow was that actually the contrary, it was an epidemic that was affecting everybody.
Even the government in those days was a source of disinformation and showed a lack of understanding about AIDS. Some leaders initially denied its existence while one health minister infamously suggested it could be cured by easting beetroots.
As the former co-workers walk back in time down now crowded corridors with various new services, another team member, Makie Kunene, remembers little was known about the virus and the young team had to learn about it while trying, at the same time, to stem an epidemic.
“It was just a trial era, having to read, having to rely on hearsay; we were dealing with something that was quite new to all of us," said Kunene. "We supported each other a lot as a team. And at the same time, we had external help, we used to go for counseling, for debriefing, for sessions where we'd just sat down and talk about our experiences.
Today, Mary Crewe is the director of the centre for the study of HIV/AIDS in Pretoria, which she founded in 1999. Its goal is to reflect and think strategically about a virus which has killed millions worldwide and has no cure.
Over the last two decades, South Africa has made huge progress in the fight against HIV/AIDS. While it remains the country with the highest HIV population, it has also been successful in rolling out a model program for the use of anti-retroviral medication to help people live longer. But Crewe said there is still a long way to go even with the drug program.
“A large number of people who are getting the drugs are hungry. And so if you've got very high levels of malnutrition, low levels of food security, very expensive food starches, and you're asking people to take the drugs, they can't tolerate them quite often," Crewe explained.
The centre also aims to raise awareness among young people.
Crewe works with a team of more than a hundred student volunteers from the University of Pretoria. They are trained and do counselling, community outreach, education and research.
While the number of AIDS related-deaths has decreased globally over the last years, there has been a rise in teens contracting HIV. The World Health Organization said there has been a 50% increase in AIDS among young people between the ages of 10 and 19 between 2005 and 2012.
Law student Nazo Tumsi has been involved with the centre for a couple of years. She says what attracted her in the centre when she first came was that people can speak freely. "It was a space where young people get to speak about things you never get to speak about. And we actually learn something. It was more than just life-orientation in high school. Or they tell you HIV is real so use a condom," he said. "We went way beyond that. It was more about understanding the HIV epidemic more than telling us how we should conduct ourselves in our sexual lives."
About 160 students are currently involved in the centre, despite the stigma they say they sometimes face as HIV/AIDS volunteers. They are part of a new generation of activists and thinkers aiming to understand and fight HIV/AIDS and hopefully, make it become history.