 For more videos on people's struggles, please subscribe to our YouTube channel. Welcome to this edition of the People's Health Dispatch. This is a video interview where I, my name is Karju Mardwaj. I'm a lawyer based in India working on trade and health. And I'll be talking to Mark Haver, a social justice activist based in Johannesburg, South Africa, who is co-founder of the Treatment Action Campaign, as well as head of the AIDS Law Project, which later became section 27 in South Africa. I'm going to be discussing what 40 years of AIDS, which many of us have read about in the press, is being discussed in a bit of detail. So welcome Mark. So yeah, 40 years of AIDS. I mean, we're really marking it because there was a report in June of 1981 of the US CDC reporting five people who have been diagnosed with unusual pneumonia. Of course we're discussing pneumonia in this pandemic as well. This was considered the first documentation of HIV and AIDS I think for us in the global south, the virus came a lot later. And the habit that came with it was probably in the following decade in the 1990s. What the virus brought with it was not just illness and death, it brought stigma, it brought discrimination, it brought violence. And it took a long time to actually outlaw the stigma and discrimination associated with HIV, whether it was employment or housing, schooling, public access. Mark, I think you were at the forefront of many of those battles. Dealing with the stigma and discrimination, whether it was in the courtroom or outside the courtroom. And it would be great to hear from you about what those early years were like and what do you think has probably changed now? Great. Well, thanks, Partilman. It's lovely to speak to you. It's June the 16th in South Africa, well, all over the world, which for us is a very historic day because it marks the anniversary of the Soweto uprising in 1976, which began a struggle and a revolution that eventually brought democracy to South Africa. Yeah, look, I became involved with HIV as an activist in 1994, in fact, immediately after our first democratic elections. And in those early years, people already knew in South Africa, epidemiologists, people who were doing modeling, that HIV had the potential to become epidemic and to become a massive epidemic in South Africa. I remember in 1994, there was modeling that suggested that up to five million people could be infected with HIV. Today, there are seven and a half million people living with HIV in our country. But because of the stigma, there was a silence and there was a fear. And because in the 1990s, of course, we were still mostly in the period where people with HIV were largely asymptomatic. Warnings about illness, warnings about mortality and death didn't seem to take root to be heeded because people couldn't see this epidemic that we said was coming. And then later on by the early 2000s, when a lot of people, a lot of our friends, our comrades, our family members were dying of AIDS. Again, because of the stigma, the response of many people was to say that they didn't die of AIDS. It wasn't AIDS. It was because people were bewitched or it was because of tuberculosis or it was because of a whole number of factors. So really, in the first decade or 15 years of the epidemic in South Africa, we had a terrible struggle to overcome stigma. And we used several strategies. As you hinted, I joined the AIDS Law Project in 1994 with Zaki Ahmad and Justice Edwin Cameron was the head still at that time. And the AIDS Law Project used law to try to create a legal framework that was non-discriminatory of people living with HIV. We developed a charter of human rights and HIV and we used litigation in 1998. We had a groundbreaking case which we brought against South African airways because they were refusing to employ people living with HIV as cabin attendants. And people said to us, don't take that case. You'll never win that case. Everybody thinks nobody wants to be served on a plane by a person living with HIV. That was the level of stigma and prejudice. And we won that case. Eventually it went to the Constitutional Court and we got a very, very powerful, profound judgment about discrimination and stigma and not condemning people to economic death. That was the language of the court because of HIV infection. But as you know, law is one thing. Law doesn't change behavior. So we had to have another campaign that was led by the treatment action campaign to try to destigmatize HIV. And as you can see, we launched the treatment action campaign in 1998 on Human Rights Day 1998. And we launched it very quickly. We developed this t-shirt which became like our uniform, which was part of a strategy to destigmatize HIV and to say to people, if you have HIV, I'm going to be open about it. If you don't have HIV, understand what it's like to live with HIV in order to feel the discrimination and stigma. So it required various different strategies to run simultaneously. And as you know, as an activist, you don't end the problem like this even today. We now, as you said, 14 years since the start of the epidemic, we still live with stigma and discrimination, not at the same extreme level, but the problem is still there. Thanks, Mark. I think that t-shirt was so iconic and it remains iconic for many of us. And so many future health battles are actually on the back of that t-shirt. You know, the messages always change at the back of the HIV positive state in front. And that was a message that came to us in many other countries as well. Your South African Airways case was quoted by us in anti-discrimination cases over here. So part breaking at so many levels. But I think the other thing that sort of emerged over the years of working on HIV mark for many of us was that what we really realized was it wasn't the virus. The virus was a true marker of inequality. What it showed us was the gaps in society, those who have been marginalized, either by law or by social norms, when you saw who was vulnerable to it, when you saw who was most deeply impacted by it, and whose, which community suffered the brunt of the pandemic. And you see that even till today, whether it's in the developed world or in the developing world. 2021 is, it's an interesting landmark. It's not just 40 years of, you know, the first documentation of the cases. It's also 20 years of the first UN General Assembly special session on a health issue. It had never happened before and it was on HIV. And all our governments meet every five years since then to agree to, you know, international solidarity, commitments, goals, targets who sort of move towards addressing the pandemic, or what is now called, you know, ending AIDS. And I think that is really a place where so many activists have tried to push in the idea that if you don't deal with the violation of rights, if you don't deal with inequality, you're not going to meet these targets and goals. We just had the UN High Level meeting for 2021 on HIV in the last two weeks. And I was wondering what you thought of the outcomes of it and where do you think you really are in recognizing inequality as a drago of pandemics? Well, you're absolutely right, of course. In fact, you know, yesterday, these days, one of my jobs is to be the editor of a publication called Maverick Citizen, which is a social justice platform, human rights platform. And yesterday I wrote an editorial that was titled something like ending COVID means ending AIDS and ending AIDS means ending inequality. And inequality underlies AIDS, it underlies non-communicable diseases, it underlies COVID. Inequality is perhaps the greatest determinant of health and of access to healthcare services. And sometimes you feel like governments don't learn this most fundamental of lessons that we will not stop pandemics. Well, you might be able to stop them for rich people, but for poor people, these pandemics, these viruses will continue to run rife and cause suffering and loss. And so, you know, my question is, what I wrote in this editorial was to say, where's the plan to end inequality? You know, the targets that UN AIDS has set for 2025 are bold to the numbers of deaths, I think cut the number of deaths to 250,000 a year, cut the number of infections to 370,000 a year. You know, Kajal, with your and my memories that go back 25 years, 30 years on that, that's radical. We would never have dreamt that we could have got that close. So it's progress. But on the other hand, you know, you won't get there without dealing with this inequality. And what scares me is that COVID has just made inequality a great deal worse. Again, you know, I saw something by the World Bank yesterday, 150 million more people pushed into extreme poverty as a result of COVID-19. In South Africa, we've lost three million jobs. The people who've born the brunt are women, just as women bore the brunt of and continue to bear the brunt of HIV. So what's really maddening is that we know all of this, and we don't act on knowledge. You know, in the early days of the HIV epidemic, when I used to write on it, one of the quotes I used to use time after time was from some sociological research that was published, I think in about 1992 or 1993. So way before the HIV, when there was still time to stop HIV in South Africa. And these researchers pointed out to the fact that HIV epidemic had really started in amongst mine workers, or what were the first groups of people where the epidemic began. Because of the conditions of mine workers, because they were migrant workers, because they lived in hostels, away from families, away from communities. And it pointed out that the epidemic would move from mine workers to sex workers, because sex workers worked in those communities and through sex workers into larger communities back into the areas where people come from. And that was exactly the path that the epidemic followed. So, you know, knowing that social science, we could have stopped it and we didn't stop it. And now as we sit here today in South Africa, you know, we've had three and a half million deaths due to HIV.