Since it’s 1999 founding, the Treatment Action Campaign has not only revolutionized the conversation about access to AIDS drugs in South Africa, it has reshaped the way we talk about the issue globally.
When Zackie Achmat—-a Western Cape activist who had long been involved in the country’s race, sex and health politics—-founded TAC, most global debate about HIV treatment centered on the intellectual property rights of Western drug companies, and on the question of whether resource-poor countries should be able to ignore patents in order to get affordable drugs to their citizens. By mobilizing thousands of South Africans—-in no small part by invoking the rhetoric of the anti-apartheid struggle—-Achmat and his colleagues at TAC reshaped this debate into one about human rights. Indeed, their activism has gone a long way towards establishing the notion of access to AIDS treatment as a basic human right everywhere.
TAC fought stigma around the virus by marching through the streets of South African cities and townships, boldly sporting t-shirts with “HIV Positive” emblazoned on their chests. They coordinated with U.S. activists to stalk Al Gore on his 2000 campaign trail, prompting the Clinton administration to abandon its support for the drug companies’ legal effort to protect their patents. And they launched legal campaigns of their own, both against the drug companies and the South African government itself, which forced the government to commit to distributing AIDS drugs to poor South Africans.
Achmat dramatized all of these battle with a personal a “drug strike,” refusing to take the anti-retroviral drugs that were available to him until they were widely accessible in his country. He was forced to break that strike in the fall of 2003, when his health deteriorated to a point that prevented him from continuing his activism full time.
Today, TAC faces a whole new set of challenges. Having won the court battles establishing South Africans’ right to treatment, they now watchdog over the government’s stuttered rollout of universal access. Four years after TAC boldly introduced itself to the world at a historic rally during the 2000 global AIDS conference in Durban, the overwhelming majority of South Africans still do not have access to HIV meds. So having successfully redefined the global debate over treatment, how will TAC now use that change to actually get “drugs into bodies,” as the slogan goes? And having established itself as a crucial part of the country’s political and health landscape, how will TAC move from protesting and challenging the government to aiding its drug delivery plans?
During last year’s global AIDS conference in Bangkok, Thailand, BlackAIDS.org editor Kai Wright caught up with Achmat to ask these questions.
BlackAIDS.org: Probably the best place to start, since it’s gotten a lot of press, is your drug strike—-and your decision to end your drug strike. You are in fact taking meds now? Tell me about the decision to do that and what it’s been like since you did that.
Achmat: First, I must say I only got to sleep at three o’clock. [Laughs] And I took the nortriptyline [an antidepressant used to treat one of the conditions associated with HIV], which kills my brain cells until around two in the afternoon.
So we know there’s that! Well, just do the best you can.
I decided not to take meds in about December of 1998–and my friends had tried to convince me otherwise, but I announced it publicly in February of 1999. And the reason was very simple: I would have had access and would have been able to afford medicines only if my friends paid for it. And my decision not to take them was based on the fact that if any of my brothers had HIV or had AIDS and were sick, they wouldn’t be able to get meds–or my sisters. So it was just as simple as that then.
This wasn’t a grand political plan. You just didn’t feel right taking them.
No. It wasn’t conceived as a political plan; it was pretty much a conscience decision, not a political choice. Once I had made it I also realized it was really important politically. But initially it was basically based on the feeling that it was unconscionable behavior for me to take the medicine, because of the price of medicines. And that’s what was behind the decision, the unconscionable and unethical pricing of the meds. But of course, as the South African government started losing its mind—-its collective mind—it took on a different meaning. And so between 1998 and about September 1999 the South African government increasingly lost its mind. And then that went on right through October 2003, which is when I took my first pills.
[Editor’s Note: During this period, South African President Thabo Mbeki began to publicly muse about whether HIV actually caused AIDS, and thus whether the government should be paying for the meds. He believed poverty and its related stressors were the direct causes of immune system disorders, and that the meds were more poisonous than helpful. After a prolonged global outcry, Mbeki gradually spoke less about his skepticism.]
You were sick a number of times during that time period.
In 1998, I had systemic thrush. In 1999—-actually, most of ‘99 I was fine except for minor infections. In 2000, I got really sick, towards the end of 2000. I spent most of 2001 half sick. The same is true for the following year. One lung infection after the other, gut infections, skin infections, herpes—really one after the other, and really bad.
And I understand that part of the decision to take the drugs was that this was getting in the way of your activism, being continually sick.
Well, it became very clear, by the time I made the decision to take the medicines, that there was nothing the government was going to be able to do to avoid paying for the medicines, and I would be very foolish not to take them. And if the government was going to stop, certainly we would win in court or anywhere else we’d go, because the money was there and the route that they were going to use was clear.
I haven’t had any serious infections since taking my meds. The only problem has been I got peripheral neuropathy [a painful condition caused by damage to the nerves outside of the brain and spinal cord, brought on both by HIV itself and some of the drugs used to treat it]. I had preexisting peripheral neuropathy, which didn’t go away, and it got really bad. I denied to myself that anything was wrong and ended up with a situation where I nearly couldn’t walk. So I had to go off the drug, rather than manage it…. It’s slowly receding, but sometimes it’s quite painful.
These are the ironies of success in this movement, right? Success means new sources of illness. Activism of course was nothing new to your life when all this started, but the notion of health and the politics surrounding health, that was new right?
No. I’ve always been active in health. In 1985, I was part of a group that started a program called the Township Community Health Project, to deliver primary care. So that sort of health activism I’ve always been involved in.
Health has always been political in South Africa because of apartheid: More Black kids die from infant mortality; more Black people’s teeth get extracted than white people’s teeth; there are fewer doctors for Black people, fewer nurses for Black people. All that’s a symptom of the system apartheid employed, really from the beginning, to politicize health. And it was political activists and doctors and nurses who got involved in fighting it. The difference with HIV, between that situation and now, is the fact that it’s now people living with the illnesses that have politicized it. So it’s got a very, very new and different driving force to it.
I think of the moments in Durban, for instance, when during the march, the streets were filled with people wearing the “HIV POSITIVE” t-shirts. That certainly was a striking moment for everyone, to see individuals from all over the country, folks that you wouldn’t expect to be out there, marching with this slogan on their chests.
That energy was very important to South Africa, too. To that point, TAC demonstrations were very small. And we put everything into it to get as many people as possible on that march. We had no organizational presence in Durban—-or a very, very small organizational presence in Durban. And a few of us went to work there for about six months, from January right through to the conference.
And we didn’t have access—-since of course the president continued being a denialist. And the “HIV positive” t-shirts we created as a way of showing solidarity and openness, of trying to undermine stigma, turned into a political statement to a president who wouldn’t say HIV. Thousands of people marching with “HIV positive” t-shirts! He saw it, and certainly it appeared to most people as a calculated political move against him. In fact, it was simply the result of wanting to create greater openness. We’d have done it whether he believed HIV caused AIDS or not.
It was certainly a wonderful confluence of events then, because for all of us that was the impression.
And to have Winnie Mandela wear one of them! [Laughs]
Yes, that was quite a moment. So did you see Durban as a watershed? Not just in South Africa but globally, in terms of creating the notion of access to treatment as a human right, introducing the world to that.
Yes, definitely. There were a number of important things. I think in Geneva [at the 1998 International AIDS Conference] it was completely clear that people needed medicines, but again that was more Europeans and Americans calling for medicines to be available in the Third World. And what Durban did, it transformed people in poor countries from recipients of solidarity and recipients of other people’s concerns into agents for our own right to life, our own health, our own dignity. And, it set the agenda in a very different way. Instead of the outrage of individuals, it sought to build a movement locally and globally.
One of the grand terms being used in talking about this is we’re calling it the new anti-apartheid struggle. Is that saying too much?
The person who coined that was [openly gay South African Constitutional Court Judge] Edwin Cameron, and he did so in about 1993 I think. And he did so not because of what was happening with our government, but because of the social stigma. It was just before the decision to create a new government, and people with HIV were being denied access to social services such as insurance, health care, housing, schooling and employment. But the idea has been changed by TAC from what was being done to people to what people did about HIV. So instead of mirroring the exclusion of apartheid, it was about mobilizing the range of tactics that we used under apartheid to politicize people.
So take our HIV positive t-shirts, which draw on three, four, five different political traditions. First, t-shirts were always a very important part of the apartheid struggle. Then there’s the tradition of the Queer Nation, ACT UP—in-your-face style mobilization. But also there’s a much deeper link. When Gugu Dlamini got killed—because of the department of health’s negligence in not preparing that community before she disclosed her status; and the organization she belonged to, NAPWA, not preparing the community—we decided to make this t-shirt. And it was based partially on these two traditions of anti-apartheid and ACT UP, but also partially on the King of Denmark: When Hitler invaded Denmark and forced Jewish people to wear the Star of David, the Danish King said, “Well, all Danish people should wear the Star of David.” And then a much more contemporary example was Benetton’s  ad campaign in which they had people tattoo HIV on their arm, or somewhere, I can’t remember whereabouts. So it drew on many different traditions.
In January 1999, we put out a demand to President Mbeki: AZT and nevaripine for pregnant women. And it caused a huge outcry I remember, but again the t-shirts were—-while there was a political statement, it served as a mobilizing tool and slogan for much of TAC, and for the broader society too. What TAC did was catalyze a broad range of people to support our demands, which is very different from ACT UP or many of the gay and AIDS organizations in the States and Europe. We didn’t see ourselves as an AIDS organization. We saw ourselves as an activists’ organization that was going to make AIDS everyone’s problem, not AIDS organizations’ problems. So we engaged the trade unions and the churches and the school teachers and the human rights organizations and children’s organizations and so on—people who were traditionally left on the margins of AIDS who thought that AIDS was a problem for AIDS organizations.
And that’s a strategy born of the anti-apartheid movement.
Right, without question. So it meant two things. First of all, a patience with educating society. So when someone says, “These poor AIDS victims,” you don’t jump on their head and scream, “Ah, I’m not a victim!” Their words are not from the will to hurt, but from a misplaced compassion. And so you seize on the compassion side of it and turn it to your advantage.
All of us know that our government’s AIDS policies were wrong, immoral and unconstitutional and verged on—-as the head of the social division of the World Bank said—-bordered on criminality. Yet, most people voted for this government; most people will continue voting for this government. I voted for the government this time last year. So our politics must not to alienate our own supporters by adopting too loud a tone with government, too hysterical a tone with government. That alienates people.
It’s a difficult balance though, because still you hear criticism, like you heard at the meeting the other day, that TAC is too confrontational and TAC is too angry. And Zackie is too angry. So if your goal is not to be too confrontational why is that criticism still out there?
I didn’t say not to be too confrontational, I said to be patient with people we are trying to bring to our point of view—because government policy is criminal…. If this was a white government, millions of us would be on the streets saying genocide. We have a misplaced racial solidarity.
So, yes, we want to make people come to the point of self-critique. And, you know, they haven’t seen anger yet. There’s so much anger in our organization, amongst people living with HIV and health care workers, that if we were to be angry [laughs] they’d know what anger is. For the most part, we’ve been seriously restrained.
So another irony that comes up is you voted for this government, and the idea that so many people, yourself included, spent so many years trying to get this government—-not just this government, but many of the same individuals—-into power. And now your life is dedicated to fighting against them. Is that an irony for you, and how do you deal with that?
All of us grew up with our first understanding and development of political strategy based on the Freedom Charter of the ANC. I remember there was an America woman, I think her name was Cindy Patton, who wrote a piece on going from “grassroots to business suits”-—which was how she characterized the transformation of the grassroots movement to mobilize for AIDS medications and services and so on into agency-driven programs. But with us it’s the opposite, because from 1992 to 1994, all of us were led by the ANC in drafting a national AIDS plan. And in 1994 they adopted the best AIDS plan ever seen.
Well, on paper everything about South Africa is amazing, right?[Laughs.] Yes, but they genuinely set about trying to do it. They increased the budget, within months, from 20 million rand [South Africa’s currency] to 75 million rand. I was working at the AIDS Law Project and I was called in and they said, “Here’s a million rand, start implementing our human rights program,” which is to make sure that there’s a law that bans pre-employment testing, prevents discrimination in schools, in housing, in sex work, in all those things. In fact, they said, “Here’s two million rand.” And I said, “No, our organization only has the capacity to deal with one million, I’m not going to take two!”
And so all of us put on nice suits and we could go into any office and engage with any minister on any topic at all. And for the most part had positive outcomes to it.
So what happened?
Two things happened. Our HIV epidemic started turning into an AIDS epidemic—-that was an objective fact. [That changed the government’s challenge from protecting the rights of people infected with the virus to the much more expensive problem of treating them.] But secondly, on the subjective level, which became an objective obstacle, was our president becoming an HIV denialist. And those two things taken together brought the political nature of HIV to the fore in the way nothing else had.
Anywhere in the world, HIV is deeply political—-not partly political, but deeply political—-in the way that it speaks to all the inequalities of the world we live in, and power. There’s the relationship between pharmaceutical companies and people who consume their products. So it speaks to corporate accountability and corporate governance. It speaks to the deep inequality between men and women. It speaks to inequality between black and white. It speaks to sexual orientation inequality, the marginalization particularly of gay men, but also lesbian women and bisexual women. You can go on in that vein and look at every structural inequality, every structural division in society, and you will find that it impacts on the risk and vulnerability for HIV—and most importantly on how people access services. And so what happened was, from wearing business suits we went back to the grassroots. And that’s why this is my first and last AIDS conference. I can’t take it.
Because it’s too close to suits?
Far too close to it, far too close. I think the fringe programs of this conference, the involvement of people living with HIV, the politics of this conference, is an attempt to co-opt people like ourselves—all of us—into being a conscience for something that is actually fundamentally driven by pharmaceutical companies and their interests, by governments and their interests, by UN agencies who mean well but who need to do more at the country level. And that’s our job, to make sure that that happens.
But for the most part, all the AIDS organizations that represent “the community” are so out of touch with the people they serve and/or are so marginalized that it doesn’t matter. Take for instance if you come from a poor country in Asia, Latin America or Africa, and you’re a small group and you’re marginalized at home, this is the only place where you can get a voice, to voice all of your frustrations. So that becomes part of the spectacle of the conference, of the carnival of protest. But it doesn’t lead to change. It just means that the political rhetoric is so bland that it mushes us all in and sedates us. And then we go home until the next time, when we come and shout again.
So, where are we heading? Durban was so optimistic. But it seems like there’s been so much frustration, globally and in South Africa, since then. And a movement that is largely driven by the energy coming out of South Africa has done more for the rest of the world than it has for South Africa.
That’s both true and not true. As activists we often don’t know how to celebrate. I mean, we’ve brought the price of medicines down stupendously, and this is having an impact in every area of life, not just HIV, because it’s focusing the world’s attention on corporate responsibility in the field of health.
Which is a completely different conversation than the one we were having when we walked into Durban.
Exactly. And very importantly for us, it’s bringing us all back to where we should have started—and that is health care transformation. Because I think it’s completely crazy that people in America with HIV should be told they will receive HIV medication, regardless of insurance status, and yet most poor people there don’t have access to basic health care services. It’s crazy, absolutely crazy. So we are in a position to lead the transformation of health care services, to promote the social democratic idea that Europe has, making health a public good that everyone has access to.
What I would like to see coming out of America is a very strong movement of unifying little old ladies who dye their hair and go off to Canada to get drugs with young and old gay men who borrow their lipstick. They can work together for a common goal, and that is decent health care for people in the United States. And again, including people who are really marginalized in places like the States: the Latino community, working class Black and white people, middle class Black people. But it’s not at these conferences that these battles are fought or won. Conferences are a moment that you use to raise the demand.
What is needed right now in the poor world are human resources to implement an antiretroviral program—nurses, doctors, pharmacists, psychiatrists to help maintain a quality level of counseling. And so I would really like to see Europe and North America get together and say, we’re going to encourage people to go to poor countries—not on a once-off basis, but on a sustained basis for two or three years at a time—together with the development of a country-level program of investing in healthcare broadly. Training healthcare workers and retaining them with good salaries.
We want to shift the focus from drug pricing. There are still very important drug pricing things to achieve: second and third line regimens, fixed dose combinations for kids, new generations of medicines, diagnostics prices and so on. There are still all those things. But essentially the legal framework and the moral consensus say that price should not be an obstacle to access. We need to create the same moral consensus on resources.