Interview with Stephen Lewis, UN Special Envoy for HIV/AIDS in Africa

Stephen Lewis is the UN Secretary-General's Special Envoy for HIV/AIDS in Africa. He spoke to PlusNews about the crippling impact of HIV/AIDS on women and the "human rights violations" of people living with HIV/AIDS.

QUESTION: Why is stigma and discrimination still a problem, what is it that people are afraid of?

ANSWER: Because AIDS is essentially a matter of sexuality, a matter of sexual intimacy, because AIDS results in such terrifying and grotesque death and because families fall apart, [because] everyone who comes in contact with AIDS thinks its a death warrant. AIDS remains a stigma even in the countries which are most beset by the pandemic and have the highest prevalence rates. I remember meeting just three or four weeks ago with a dozen women in Arusha, Tanzania, and they were all living with AIDS and I said to them, "this is unusual, you're all living with AIDS you're meeting with me here in this little community centre, what is the reaction of the people in your own communities". And they looked at me as though I was crazy, and they said, "nobody in our communities knows we're living with AIDS, only in Arusha, in an urban centre are we prepared to say we're living with AIDS, where people don't know us. Where people know us we'll be subject to rejection, exclusion ostracism, there's no way our families will deal with us, they'll throw us out, we'll be isolated and alone so we just don't tell anybody except where its safe", and its safe in an urban setting, and that is increasingly true right across the continent, its true everywhere. Overcoming the stigma and the discrimination against people living with AIDS is one of the chief ways of being able to respond adequately to the pandemic, because the stigma and discrimination are paralysing, they prevent programmes from taking place, they prevent issues from being discussed openly, they prevent open talk of sexuality. One must remember that it's only a couple of years ago now that a women in South Africa, who said publically she had AIDS, was stoned to death. These horrendous things happen and people living with AIDS know.

Q: Twenty years after AIDS was first diagnosed it's still not treated like any other disease ...

A: Its absolutely not treated like any other disease and people living with AIDS are subject to a great deal of discrimination, and the relationship between AIDS and human rights is hardly yet established, whereas any other communicable disease and human rights is very much established. We prevent people with AIDS from maintaining employment, we discriminate against their children in school, we don't give them the medicines they should be entitled to as a matter of right. The levels of discrimination against people living with AIDS are almost enough to fill a catalogue of human rights violations.

Q: Even in UN reports on HIV/AIDS, they still include classifications of people - intravenous drug users, high-risk groups - but we are yet to see AIDS as a holistic problem that affects us all. Is that a fair assessment?

A: Well I think we're much more holistic now than we were, and I think the tendency to classify and segment is less obvious now than it was. But its very interesting, what's been true of AIDS for some time as it unfolds, comes to light always very late. We've known for years now that AIDS was disproportionately striking women in Africa, and young women in particular. But it's only in the last year we've begun to focus in on the fact we were annihilating a gender, that we were depopulating a continent, in parts, of its women. We've know for some time that AIDS in combination with a given sector could result in a dreadful collapse in that sector. It's only now, with the humanitarian crisis and the famine in Southern Africa, that we're finally linking AIDS and agriculture in that kind of apocalyptic sense that everyone intuited years ago might come, but wasn't prepared to confront. Where will it happen next, in education, in areas of conflict, in refugee camps? I think it should be possible now to learn from what we know, and think through the implications. What happens in a community where your women are reduced catastrophically in numbers? What happens to the children, what happens to the new families that emerge that haven't had skills in love and affection and nurturing. What happens to your agricultural workers when women do 60 to 80 percent of the productive agricultural work, what are the implications for what we are seeing? It's not merely overcoming the segmentation of groups, in China it's caused by the contamination of blood supplies, in Russia its caused by intravenous drug use, in Latin America it's mostly men having sex with men, in Africa it's heterosexual sex. After you've finished these classifications, we must now surely understand that everything is linked, and no society with even a modest prevalence rate can escape the hugely damaging impact of AIDS.

Q: Access to antiretrovirals is still so far from the realities of most people, is it a problem in your mind that we keep focussing on pills as a cure-all when there are also issues of poverty that need to be addressed in terms of care and treatment?

A: I've never regarded antiretroviral treatment as a cure-all, I personally have regarded it as a way of prolonging the lives of millions of people and I think that's a pretty darn good objective, as well as providing hope in prevention campaigns - it's the kind of hope that says if you happen to be infected, there are ways of keeping you alive. It restores a sense in the community that they have to deal with the pandemic, but it's quite clear that we don't have the money for antiretroviral drugs, and therefore questions of access are theoretical anyway, they're purely hypothetical. What kind of access can you have when you don't have the drugs? It's something we're going to have to overcome, we're trying, the UN has said three million people in treatment by the year 2005, that obviously means well over two million in Africa, that obviously means every country will have some component of people in treatment. The World Health Organisation said it, they don't say things in a cavalier way, one assumes that they meant it. So it may be that the "pills" as you say, will ultimately have an impact, but I don't think you can face the pandemic without dealing equally with care, prevention and treatment. I think you have to deal with all three.

Q: Turning to Southern Africa and the link between food insecurity and AIDS, and the deeper structural problem of poverty, you need such a broad-ranging response where do you begin? Is the recognition there of the need for a mulitsectoral approach?

A: No, I don't know if the recognition is there. I know that when we started responding to the pandemic we all responded to it as a health issue. Gradually, over the last two or three years in particular, there has been an increasing multisectoral response, and the national AIDS councils, national AIDS commissions, have programmes in place - three year plans, five year plans - which say all the sectors have to be involved. I think the nexus, the dreadful combination of AIDS and famine, will serve, if I can use the phrase, as a wake up call, as a recognition to the rest of the world that AIDS in combination with any sector can lead to its ultimate collapse, and that we're dealing with something so different from what we've ever dealt with before. Isn't that the truth that's now emerging? That the impact of AIDS is so monumental on societies as a whole, and on communities and families in particular, that there is no precedent in human history, that there's nothing, from the Black Death [a European plague in the fourteenth century] to the world wars of the twentieth century, that even approximates it. That we've never had such numbers, we've never seen the focus on a gender, we've never had so many orphans, we've never had so many societal breakdowns in various sectors, that what's happening here is just an overwhelming concatenation [linkage] of events, of which there are no modern parallels, and therefore we have to respond in ways that are unprecedented.