Johannesburg — South Africa's most famous Aids activist is called Zackie Achmat. He has been HIV positive for more than ten years and leads the Treatment Action Campaign, which is fighting for the right of HIV positive South Africans to receive anti-retroviral drugs through the state. A former anti-apartheid activist, he was locked up seven times by the old regime. Achmat says Aids is South Africa's new struggle. "It is morally wrong to be able to purchase life," he says: "That is exactly what is happening with HIV. Poor people are regarded as dispensable, because they cannot afford to pay for their medicines."

Achmat and the Treatment Action Campaign (TAC) have led the campaign on the streets, in a bid to force a change in government policy on the treatment of HIV/Aids.

South Africa's undisputed moral leader, Nelson Mandela, has lent his support to the cause of TAC's anti-Aids campaign. Mandela said of Achmat, who he has visited several times in Cape Town, "He is a role model and his action is based on fundamental principles which we all admire."

Zackie Achmat continues to campaign despite persistent ill-health and he has been nominated for a number of awards for his work. The latest comes from Global Health Council which has announced that at a special Awards Banquet on May 29, 2003, in Washington, D.C., Achmat will be presented with the Jonathan Mann Award for Global Health and Human Rights. He will share the award with Zimbabwean doctor and campaigner, Frenk Guni.

According to the Council, "Zackie has used his own HIV+ condition as a platform upon which to advocate for equity and illustrate that health care is a basic human right. His private insurance would pay for the ARV treatment he needs, but he refuses to take any treatment that isn't available to everyone. He is a man willing to die for his convictions that all should have an equal right to care. His unwavering tenacity has kept this issue on the forefront of the South African government's agenda."

Ofeibea Quist-Arcton recently spoke with Zackie Achmat in Johannesburg. Excerpts:

Anyone who knows anything about the fight against HIV/Aids in South Africa probably knows the name Zackie Achmat. But tell us a little more about yourself.

My name is Zackie Achmat. I am a 41 year-old gay, male South African. I was born in Baragwanath Hospital in Johannesburg. I grew up in Cape Town.

I have HIV and I live with HIV. I’ve had it since 1990 at least. I am starting to get sick. I’m in the third stages of HIV, probably getting ready to go over into full-blown Aids. I am very active and a member of the Treatment Action Campaign (TAC) in South Africa. We campaign for treatment for people living with HIV/Aids. We are a grassroots organization, which is nationally based in five of the eight provinces. We have nearly 10,000 members spread across about 70 branches across the country. We bring together nurses, doctors and cleaners in hospital as well as people living with HIV and their parents, their friends, businesspeople, trade unionists and so on.

What we’re doing is campaigning to make medicines affordable in our country, for a better public health-care sector. And most importantly, we are campaigning to ensure that our government’s policy on treatment changes.

You are very outspoken - some say provocative - about the South African government’s official stance on HIV/Aids and the treatment issue. What is the problem with the authorities’ policies?

The government we have now is the most progressive this country has ever had when it comes to a legal framework, policy on HIV and broad pro-poor policy. However, on HIV and Aids and certain other development and job creation questions - but let’s stick to HIV/Aids specifically - the government’s policy, which was one of the best under (former President) Nelson Mandela, has changed to one of denial under President Thabo Mbeki.

And by denial I don’t simply mean psychological denial, but also scientific denial in which our government is flirting openly and now collaborating openly with people who are HIV 'denialists', people who don’t believe that HIV causes Aids and that Aids leads to death and people who don’t believe that HIV is sexually transmitted.

Therefore, this year alone - in our country - 250.000 people will die of Aids-related illnesses, that’s over 600 people a day. And yet our country is a country that believes it is New York, when we have to host meetings like the WSSD (World Summit on Sustainable Development) or when we need to host a World Conference against racism. But, when we need to meet the needs of poor people, then we pretend that we are Afghanistan and that we don’t have any infrastructure.

And yet we know that we are economically the most powerful country in Africa. We play an imperialist role in other African countries. We invest there, we take their wealth away and we force them to buy our goods. We take labour from Mozambique, from Zimbabwe, from Angola, from across the continent and so on. So South Africa is a fairly developed country in this region. It has played a very important role and it should play a role, not only in looking after its own people’s health, but assisting in the healthcare of all people in the region.

But are you making any progress in your efforts to pressure the government?

Let’s take the simple example of mother-to-child transmission of the virus. As you know, South Africa now has the biggest mother-to-child transmission prevention programme in the world. How did that come out? For five years, for six years, we struggled against our government to recognise that a simple pill could reduce mother-to-child HIV transmission in our country.

We struggled against all odds. We negotiated. We had prayer meetings. We met with them, we had workshops with them, but they continued denying. In the end we went to court.

So, in that sense, the government showed that despite the fact that it had the resources, it didn’t have the policy or the understanding to deal with the epidemic and it had to be forced by the highest court in our country, together with enormous public pressure from every layer of society, to change its policy.

Now we have the biggest programme. It’s not the best programme or the best-run programme, but it’s there. It’s a start. And I believe we’ll get much more if we stand together.

That’s why we formed the important organisation called the Pan-African Treatment Access Movement (Patam). That’s important for us because we want to work with other activists in other African countries. We want to work with doctors and nurses in other African countries and with village and civil society leaders to demand, not to beg, from America, not to beg from Europe, but to say, we’re here, you take our goods and you give us peanuts for them. You take our cocoa, you take our gold, you take our silver and diamonds. You take everything from us and give us a pittance for them. That is not what we are asking for, what we are asking for is fair trade and our fair share.

We are not going to let our people continue dying, because there are medicines that save their lives and we are going to fight for them.

When South Africans think of Zackie Achmat, they see a man who is an emblem and symbolic in the struggle against HIV/Aids in your country. But you are also just a human being living with HIV/Aids and asserting your rights.

It may have been true a few years ago that I was emblematic, because when we started our organization, there were about a hundred people, fewer than a hundred people here in South Africa who openly lived with HIV/Aids. But I think what has really become emblematic in South Africa is our organisation, the Treatment Action Campaign, and our HIV+ T-shirt and the fact that people are prepared to identify and the fact that there are now thousands of people living with HIV in our country.

And I think it’s not only what we’ve done as an organisation for people living with HIV and for treatment, but we’ve created a certain openness, not enough by any means, but a lot more than there was before.

That’s at one level.

And then on a personal level, you know, one goes through times when you are completely lonely. It’s not easy to have any life-threatening condition and to have one that the government denies exists - especially if it’s your government, a government that you’re proud of, a government that fought for the dignity and equality of black people - it hurts, it really does hurt.

Who do you blame - if that’s the word - for the way the Pretoria government is handling, or in your view, mishandling the Aids issue, which is of course crucial to development in South Africa?

You know, Aids is so full of blame. Where I would like to start is, "who is responsible?" The biggest problem is that all the people in civil society, trade unions, churches, religious organizations and so on, we are not doing enough to pressure the government which has not accepted responsibility.

And so what we want, and what our Constitutional Court ruled, in a case that our organisation took against the Minister of Health, the Constitutional Court said that government must lead, but our government is not leading. So the biggest responsibility for the lack of a policy falls on our government and not on our people. But all of us need to do a lot more, not only to deal with the shortcomings of governments, but also in our personal lives to make sure that we don’t harm ourselves and we don’t harm other people when we have sex in our relationships and so on.

So, I believe that there is enormous responsibility that we should have across the board, not just the government. But certainly the government is the biggest problem at the moment in terms of not leading in a proper manner.

President Thabo Mbeki is known to have had what some would say are wrong views or at the very least, has sent confusing and mixed signals about HIV/Aids, by disputing the link between the two. Do you hold President Mbeki responsible?

The first thing I would say about President Mbeki is that I was one of the people who campaigned for him, who hoped that after President Mandela we would have someone with energy to lead and responsibility to lead. I believe that the president has taken us along a disastrous road with the HIV/Aids policy.

That has also been fuelled by a paranoia of criticism. I am a member of the ANC (the governing African National Congress) and I want to be loyal to the party and I believe that the best way to be loyal to the ANC is to speak publicly about its shortcomings.

Unfortunately, what has happened is that the ANC government, particularly Thabo Mbeki, thinks that any form of criticism is an attack on the government.

This is the worst catastrophe, it's worse than apartheid. It really is worse than apartheid. Apartheid hasn't killed as many people as HIV has already killed in our country.

I think the fundamental problem is our government and particularly our president’s stand - that he doesn’t believe that HIV causes Aids. He still does not believe that HIV causes Aids. He cannot bring himself to mention the word HIV. He will speak about Aids, because he has been convinced by dissidents that it is a politically correct way of denying that HIV exists. But he is not prepared to use the word HIV.

Why?

(Laughs) Your guess is as good as mine. I don’t know what motivates the president in this understanding or lack of understanding.

Has he ever agreed to meet you to discuss it?

All of us have tried. I have tried, our organisation has tried. Many organizations have tried to meet with him. He hasn’t met with the citizens of this country, but he has met with American and Australian crankpots. It’s shocking! It’s a disgrace actually, if one wants to be honest about it, that’s what it is.

We’ve met with the deputy president. The deputy president has been fairly okay about it, but again, it’s promises without delivery. We now are at the position where we are saying to the government, we have to have a civil disobedience campaign. We postponed it at the request of the deputy president. But we are saying, also to the Americans, don’t spend hundreds of billions of dollars on war, spend the money rather - $2-3bn that the Global Fund needs - to treat HIV/Aids, TB, malaria and other diseases of poor people in the world.

You know, I really think there is a lot we can do. HIV is a deeply political issue. It’s political because it’s about how people treat each other, both in their personal relationships and as citizens and as rulers and ruled. It’s a test of governance, of how you govern yourself, your own relationships, but also how you’re being governed by your rulers and how private enterprises treat their workers and how pharmaceutical companies treat people. So it’s really a test of governance in every aspect of our lives - whether women are treated properly or not, whether gay people are treated properly and whether black people are being misrepresented. It brings all those things into focus.

Most importantly, it affects poor people more than it affects anybody else. We’ve always said this. Thabo Mbeki makes it sound as if he invented the idea that HIV and poverty are linked. But you go back to all our policies, the whole world knew this many decades ago. So, for all of us, it’s a real challenge and I believe that we can overcome it if we work together.

We could recall here that you are a member of the ANC who went to jail for your beliefs, for a free South Africa.

I first became politically active in 1976 (the year of the Soweto riots) when I was 14 years old. I went to prison several times until I was about 21. Then I lived partially underground until 1990, which is ironically when I also learned that I had HIV. So for me it’s a tragedy what’s happening in our country, it really is. In a certain sense it’s a personal tragedy because we have so much potential. We have smart people, like in other parts of the African continent, but most importantly we have the resources that other parts of the country do not have. And we are not using those resources to look after our people and the rest of the continent and that’s the tragedy for me.

President Mbeki has chosen not to meet you, but of course former President Nelson Mandela has had a very high-profile meeting with you, hasn’t he?

I’ve had three meetings with former President Mandela. He came to visit me when I was sick and asked me to take medicines. I haven’t acceded to his request yet, and I will I hope, because I hope the government will change its policy soon.

I also think that the times have changed. When I first took this decision not to take antiretroviral medication, medicines cost R4500 per month. Now it costs between R600 and R1200 per month. When we started our campaign, fewer than a hundred people were on antiretrovirals in our country. Now there are 17,000 people at least. So the conditions have changed substantially.

And as I said earlier, at that time there were only a handful of people who were living openly with HIV/Aids. Now there are thousands of people. So I feel that it’s a conscience issue but it has changed now. There are enough people to take the fight forward and I hope that I will be able to change my position soon.

But former President Nelson Mandela has recognised that he didn’t give enough leadership on HIV/Aids in the way he governed. He is trying to make up for that. And, for me, President Mandela’s interventions in the Aids’ debate - not only in South Africa, but across the globe - are more important than his struggle against apartheid, because it’s about the life of a continent and the conscience of humanity. Not just in South Africa, not only in Africa are people dying, but in Asia, in Latin America, in Europe and North America people are dying.

In Russia, for instance, they have a terrible epidemic, not just of HIV but of drug-resistant TB and so on. So, I really feel it is time for all of us to stand together and I think we should let him rest and do the job ourselves.

Staying with Nelson Mandela, you’re quoted as saying "I’m an atheist, but he’s my saint."

Yes, you know, for me, one of the saddest things is how religion destroys, or how different views about religion destroy people’s lives and how people misuse religion for political reasons - something that should really be a personal thing between you and your God or whatever your belief is.

But you know, despite me not having any formal religious beliefs, Nelson Mandela was an inspiration way back when I was child. And now, as an adult, he is a greater inspiration. And there’s very few people you can say that about. Very often one’s own parents often lose their halos for their children. His just gets bigger!

Mandela is a son of the African National Congress, so are you. It is rare for Nelson Mandela to part company with his movement on an issue, but on HIV/Aids he has done so. Why?

I think there are two reasons. I think he is thinking of the damage it is causing to the party, not to the party’s political reputation or the fact that the party might lose an election, not that - but the morality of the party. The morality of the ANC is at stake here, the soul of the ANC, because you cannot let millions of poor and black people die when you have been their liberator. That is the difficulty.

And I think, more than anyone, he sees that contradiction with the government’s current policy, so he is probably more loyal to the ANC than his current national executive committee.

By the stand he has taken?

By the stand he has taken and by the fact that he has openly associated with organisations that have been critical of government policy, by leading the way in trying to find money for treatment for mother-to-child prevention and so on. And he puts on his HIV+ T-shirt in the way that very few presidents have done in the world.

You know, just to see him in that HIV+ T-shirt nearly made me take my medicine.

And yet it took even Nelson Mandela some time to take a stand. He seemed to take a position, then backpedal...

You know we live in a very difficult country and a very difficult time. And the ANC has a history of collectivism and Stalinism, where people are too scared to speak up. We also live in Africa where we have chiefs. And you listen to your chief or you’re out of the village. We live in a society that looks up to its party. And we have the history of liberation and underground work. So, it’s very difficult to be critical of your party.

But I think, there’s no question, if it hadn’t been for Mandela, the ANC would have been torn apart on this question. He has given those of us within the ANC, who opposed this policy, a defensive shield. And it’s up to us to change the policy.

Has it ever crossed your mind to consider leaving the party, because you think it’s letting the people down?

The unfortunate thing is that there’s no alternative politically. I still hope - because it is one of the greatest liberation movements of the 20th century - that there is still a possibility of saving it from becoming a very reactionary, nationalist organisation.

Please take us back to the moment when you made the decision, personally - although of course you could perhaps afford them - not to take antiretroviral medication which would, after all, have prolonged life. Was it a difficult decision?

It was probably the easiest decision when it came to political conscience, but it was a very difficult personal decision. It was in December 1998 and in the November I got systemic thrush. It was really, really bad. I couldn’t eat, I couldn’t swallow. I lost weight. I had a bloated stomach. I had funguses on my body and stuff like that.

The only thing that could help me was a drug called Fluconazole, which our government wasn’t giving out in the clinics at the time because it cost too much money. I could buy it from a pharmacy and a month’s supply would cost me R3500. At the time I was earning R4000 - and I still earn that same amount of money. But I couldn’t afford it, so my friends bought it for me. Then the doctor told me, "you should go on antiretrovirals," because the guidelines were slightly different then.

I thought about it and my friends all got together and they brought money and they said here, we’ll set up a trust and we’ll contribute money and we’ll pay for your medicines. And I thought I have brothers who are more at risk of HIV than I am. They are young, they are sexually active - much more than I am - I wish I was as sexually active as they are! And if they were to get HIV, they would not be able to afford this medicine. And I would have it because I have friends who could pay and now I can pay because I have private medical insurance.

And the same is true for the majority of poor people and particularly the majority of black people in our country. It’s wrong to be able to buy life. And that is what drove me to this decision. And it’s been difficult. It has been difficult for me, but it’s been more difficult for my friends and family.

Nelson Mandela is saying "Zackie, please take antiretrovirals," people’s grandmothers are asking when you’re going to start treatment. Of course, they want you to go on living but they also see you as central to the struggle against HIV/Aids in South Africa. Obviously it’s a personal decision, but how close are you to taking the drugs now?

I have a CD4 count of 203. I should have started medicines when my CD4 count fell below 250. I hope that I will be able to take medicines very soon. I want to take my medicines. I have already decided what medicines I want to take when I start. They are the first-line medicines prescribed for poor countries.

I hope that I won’t have major side effects from them. I probably will have side effects. I hope my body will adjust to them. Those are things I dream about and I hope it is a dream that is going to come true. I am confident. We have so many people in our country willing to struggle that I would be foolish not to take my medicines, because I want to be there with them to do the most difficult work - the implementation of programmes.

These silly fights we’re having now, it’s wrong, it’s unconscionable, it’s stupid. But it’s not the hard work, the hard work is coming.

Do you feel that the government is finally heading towards a point where it will provide widespread antiretroviral medication which, I suppose, would help you to start?

There are two things. The government has put together a committee from the Finance and Health departments. The Finance Ministry has said to the Health Ministry, here is R3bn, you can start treating people. The Health Minister hasn’t asked for the money.

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We have enough money to start treating people, not to treat all of them - i.e. not all five million people. You don’t need to start at that figure, you need to start with a few hundred thousand.

We have sufficient money in this country to treat up to 100,000 people. It’s only then that we genuinely need international assistance. The worst thing is that the country cannot afford to lose five million people, both morally and materially.

The social capital will be lost and an enormous amount of traditional leaders will be lost who know to run a village (even if they do it badly!), doctors will be lost, nurses will be lost, cleaners who have experience of how to clean a hospital will be lost. This country cannot - indeed no country, can afford to lose five million of its people.

If we don’t treat people, we will lose much more than we can ever imagine. It’s a holocaust against poor people that we have to prevent.

Your private misfortune - I’m not sure that’s the right word - your story has, in some ways, become for South Africans a nation’s catastrophe. Of course, Zackie Achmat is far from the only person living with HIV/Aids in South Africa. Young Nkosi Johnson, who died last year after his struggle with Aids, was not the only one. But the two of you became the human face of HIV/Aids in this country. How does that make you feel?

(Laughs). Sometimes I just stay at home and don’t go out! For other people, HIV - especially for people who don’t have it - is an issue you think about when it’s in the news, or when the president does something dumb or when the Minister of Health does something dumb. That’s when they think about it. I can’t get away from it, so it’s difficult.

On the other hand, you know, I’ve had one of the best and most privileged and blessed lives in the country, in many ways. I’ve got superb friends, I’ve got great comrades I work with. I’ve seen many places. I try to work hard. The saddest thing about having HIV and having a declining immune system is that I can’t work as hard as I used to and I can’t read as much as I used to. I don’t get so much pleasure out of watching movies, which was my greatest pleasure as a pastime. Ja!

But you have helped to transform society in South Africa?

Not only me. I’ve played an important part. I won’t be unnecessarily modest. But the most important thing for me is that I’ve done it with comrades - people like Mark Heywood, people like Mandla Majola, people like Sipho Mtati, my sister, my ex-lover Jack. They have been enormous sources of support, but not only support. They have taken this on in ways that I can’t believe. For them it has become an issue of conscience just as much as it is for me.

So, yes, I’m proud of what I’ve done but I’m even more proud that I could be part of working with a team of people who really is putting our government to shame.

And do you feel that the Treatment Action Campaign and others leading the fight against HIV/Aids have changed public opinion? Have people stopped looking at HIV/Aids as a disease that afflicts 'others’?

The country itself has changed enormously on this issue. A veteran left-wing journalist, Max du Preez, said that the Treatment Action Campaign has given the country a conscience about HIV/Aids. I think what we’ve done has been partially that and that has been very, very important.

We have also assisted materially in reducing the price of medicines. We have assisted materially in drawing resources to the country so that people can deal with the epidemic. But most importantly, we have invested in people. We have trained thousands of people on how to take their medicines, how to look after themselves and how to take care of themselves and so on.

We have created the first open television show called Beat It, people living openly with HIV, how to look after yourself and how to treat yourself. And that has given people such enormous courage across the country. Over 13 weeks, more than 8 million viewers saw the last series, despite the fact that we could only get a terrible time slot from etv - terrible these commercial public stations! But anyway, that’s another matter.

So, yes we’ve done our job, I just wish we could do it better.

In some ways, we’ve really assisted internationally and regionally in developing policy and campaigning and so on. And I think we could never have done it if it hadn’t been for the efforts of people in North America and Europe in the early days in Act Up and Gay Men’s Health Crisis and so on.

And we couldn’t have done it without the trailblazing efforts of people in Uganda and so on. They have done enormous work on which we stand and I think that’s the advantage of living in a globalising age, that you learn from other people and they learn from you. And we’ve learnt from all these groups and all these peoples across the world and our own struggle against apartheid. And we’ve synthesised that into a campaign that I hope has reached many people in our country.

Zackie Achmat, you’re too busy being busy, but what would you like your legacy to be, do you think about that?

You know, when I die one day - and I’m quite ready to die, because I think I’ve lived enough, but also I want to live because there are lots of things I still want to do; I want to make some movies, I want to write a novel, I want to be a lawyer and all those things and I’m going to do them and I’m going to live longer than Thabo Mbeki! I’d like someone to write on my tombstone one day, "Here’s a man who lived longer than Thabo Mbeki."

As simple as that?

As simple as that.