I first began hearing about AIDS in 1997. I'd finished my nursing training in 1990 and I was never taught anything about HIV. It was whispered about, but we were told it wouldn't affect us because it was only with gay people and drug users. We thought it was a white disease. But then it came to our doorstep and we started to see our people getting sick. We started to see people who were not gay, people in our community, who were HIV positive. But after testing, they had to go into hiding because there was absolutely nothing we were offering them. We just left them to die.
When my brother died of AIDS in 2002, that made me very angry. I wanted to fight back, not just for my brother alone -- there were so many people that were dying. We had funerals day in and day out. We used to have funerals only on Saturdays, but now we had them every day. And the majority of people who were dying were the young stars, the future of the country. And no one was saying anything about that -- the government was just quiet about it. The government said AZT was toxic and they would not "poison" their own people.
So I joined Treatment Action Campaign (TAC) in 2000. The first time I went to their offices, there was no one there. The security guard told me they had all left for a picket. I thought, "I wish I was in that picket!" The following day, I went back and met Mandla Majola, one of the founders of TAC. He was from my neighborhood, so I had a warm welcome from him. I said I was feeling so frustrated working in a clinic where I was testing more than ten people every day -- and seven of them would test positive! He said, "You came to the right place, because we are fighting for access to medication."
When my brother died, I told myself, "I need to be vocal. I need to go wherever I'm needed to talk about this. I need to educate the community." The HIV protests I joined reminded me of the days when we were rebellious against apartheid in the 1970s. At my first protest with TAC, we challenged the pharmaceutical companies because we heard there were antiretrovirals (ARVs) in Swaziland and Botswana, but they were very expensive. HIV was hitting hardest in the poorest of the poor communities -- in the townships. They didn't have money to buy food, and the rate of unemployment was very high. How could they buy medication when they weren't even working? So we had a large march, and I felt great because I felt I was doing something.
The next step was to take our government to task. We felt so frustrated because we didn't have anyone in the government to go to. The President, Thabo Mbeki, and the Minister of Health, Manto Tshabalala, they were talking the very same language -- that the drugs were poison and that HIV didn't cause AIDS . So we knew we had to really shout, to whoever would listen to us. How could our President say that no one was dying from HIV? That was an insult. And then Nelson Mandela came on board and that's when I first thought, "Yes, we are on the right track -- we just have to put on more pressure." And when the international family joined us, that's when the government started to feel it.
We tracked down the Health Minister when she was going to speak in Cape Town about using garlic and beetroot to fight AIDS. We snuck inside, and as she was going up to the podium, we shouted, "To hell with Manto! To hell with garlic! To hell with beetroot! We want ARVs!" We were shouting at the top of our voices and truly it was chaotic. She couldn't utter a word. She didn't have a way of promoting what wasn't true.
We first felt victory when we took our government to court. When the judges ruled in our favor that the government had to supply ARVs, we shouted, "Haaaaa!" in court and sang the national anthem. We felt so great and we marched out into the streets. Justice had been done, but now it was back to the drawing boards -- we had to strategize. We had to plan how we were going to monitor the rollout of treatment. And that's when Treatment Literacy was born.
Treatment Literacy is the powerhouse of TAC. A group of educators are trained in HIV: the life cycle, how to take your medications, the side effects, TB. And they come out very, very confident to teach in the community and the clinics. I've never seen patients who understand their disease like HIV-positive patients. That started to panic the nurses: "What type of patients are these, that they know all this?" So we started going around and teaching nurses, because nobody was trained in HIV. And we told the patients, "When you know more than the nurses, you have to play it down or you won't have anyone to help you."
I tried to get as many nurses and doctors as possible to attend the workshops. It was crazy to teach doctors and patients in the same room. But the doctors weren't offended to learn with the patients, because we all saw what was happening and we all wanted to help. We had people coming from Zimbabwe and from Cape Town to our trainings, and I still do them.
When we first heard about PEPFAR, we were shocked. But we thought, "If someone from outside our country can come with help, we appreciate that." We knew that South Africa alone could never keep up with providing ARV drugs. Especially with the attitude of the government of the time. Bearing in mind that we had heard so many bad things about George Bush, but we acknowledged for the first time that he was doing a good thing by supporting a misery that he was seeing from far away. The PEPFAR funds have made a great difference, along with the Global Fund. In 2001, our clinic was the first in South Africa to give out ARVs, to 150 people, with no government help. Now, with international funding, we have 5,200 people receiving ARVs at our clinic alone.
We have changed HIV into a chronic disease. It's not a death sentence. People know that there's something you can do. But we still have people out there who are afraid -- especially females. We had three cases where TAC activists were raped and killed. One of the women demanded that the rapists use a condom, and they didn't want to. She said, "But I'm HIV positive," and was killed. The courtroom for the trial was packed, and TAC told the court, "You have to keep the ones who are killing people who disclose their HIV status in jail." And they are still in jail. They were given life sentences, and that was victory for us. We can't allow hooligans out there to spite people who are working very hard
We wear T-shirts that say "HIV Positive." People know that either you are positive or you support people who are positive by wearing that T-shirt. That was a real victory against stigma. When Thabo resigned in 2008, Barbara Hogan became the new Health Minister. And we gave her an "HIV Positive" T-shirt at a rally and demanded she wear it. When she did, we were applauding her because we never had a health minister in South Africa who would do that. She marched with us! That meant a lot to us. Now we can sit at a roundtable and talk to stakeholders about HIV. TAC leadership is invited.
And there are fears because there are patients who are resistant to first and second-line regimens. In South Africa, we have nothing after second-line. It's becoming scary. So we still need the outside world to lobby for South Africa. There are cases where people are failing both lines, so we are going back to square one like in the 1990s. And we really don't want to go back that way again.
Now, because of the recession, donor funding is being cut. There were stockouts in Free State. For about three months they couldn't put people on ARVs and the people that were already on couldn't get them refilled. That made us scared because if one province can have stockouts that means that we all can. We want to plead with the rich countries to keep their promises. They just now bailed out the banks with big money, but they can't find the $9 billion the Global Fund needs to provide universal treatment?
When I look back, I don't regret shouting and disrupting meetings. I would do it again if we had another stubborn health minister. I'm hopeful -- I think the current government AIDS leadership, more especially from the health side, have paved the way and we just hope that the people taking over after the next election won't be derailing what has been done. Because what they are doing now is good.
Two weeks ago, I was reading an article in the Cape Times where the funeral parlors were starting to feel the pinch of the ARV programs. They claim that the programs are putting them out of business. When I got to work that day I put the article up on the wall and shouted, "Hallelujah! We all have to come and see!" They were becoming tycoons, benefiting from the misery of other people. But now there are less funerals because people are healthy. Those are the victories that we have to cherish for a long time. We have to go forward, not back.