‘I felt the wrath of HIV’

‘I felt the wrath of HIV’

It was a poster that read ‘HIV Testing’ that changed Nompumelelo Mantangana’s life. In 2000, she was a nurse at Nyanga Junction and every morning she would come to work and see a poster on the wall that encouraged people to come and test for HIV. Despite this call, the clinic was not able to conduct testing every day because the clinic psychologist was not available for counselling.

I was so frustrated, and I demanded training,’ says Nompumelelo, now provincial chairperson of the TAC.
Her request was granted. But when she started testing people, Nompumelelo says that is when she really felt the ‘wrath of HIV’. At the time Médecins Sans Frontières (MSF) was providing ARVs in Khayelitsha, so she referred many of her patients there.

Although it seemed the best solution at the time, Nompumelelo was still unhappy. ‘It was unfair for people to go so far, I didn’t understand how people could not have treatment in South Africa, how only people with money could access medication,’ she says.

Two years later, this very frustration hit closer to home. Nompumelelo’s brother was diagnosed with HIV in 2002. She tried everything she could, but still she was unable to get medication for her brother, leading to his death. When she suffered the same experience with a second brother, Nompumelelo didn’t need anything else, or anyone else, to tell her that she needed to be part of the solution.

Throwing herself into the Treatment Action Campaign (TAC), Nompumelelo got involved in door-to-door campaigns that mobilised the community and educated them about HIV/AIDS. In the beginning, there wasn’t a single NGO in Gugulethu, recalls Nompumelelo and only 10 people were on medication, but these 10 people were empowered and able to empower those around them in turn.

Fifteen years on, Nompumelelo says, ‘the TAC is working wonders in Khayelitsha’. It has managed to change the mindset of healthcare workers and has won them over. But relations between TAC members and healthcare workers weren’t easy in the early days. ‘The healthcare workers felt under pressure and threatened by the TAC,’ she says. Being a healthcare worker herself, Nompumelelo made an effort to show other community workers what the TAC was about, and why it was important for the communities to have a working partnership. So she went about recruiting as many colleagues as she could to join the TAC.

Today, the TAC has a working partnership with all of the clinics in Khayelitsha. On any given day, you will find a TAC volunteer providing treatment literacy of HIV/AIDS in the waiting rooms. The organisation has strong relations with facility managers, and is able to raise issues of the community to the higher management teams of the facilities. This work on the ground, is the real indicator of the TAC’s relevance, says Nompumelelo.

‘The TAC is still relevant: its strength is not in offices – it’s in provinces, it’s in branches,’ she says. The closer the TAC is to people, the better it works, and many lives are changed. While she is aware that there is a lot more work to be done, there is still time to reflect on the gains that the TAC has made.

In 2010 Nompumelelo was selected to go to New York, to accept an award for the best community movement on behalf of the TAC. That experience further solidified her commitment to the movement. ‘If we can be recognised internationally, it means we can be around for a longer time,’ she says.