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Being There
Durban Delegates Return Stateside, Fired Up and Ready to Jump Back Into the Fray

September 2000

A Mouse Roars

"The answer does not lie with donations or price cuts from drug companies but rather with the mass production of quality generics. This could result in the cost of a year's antiretroviral treatment being cut to a mere $200 a year."

-- Médecins Sans Frontières, Geneva

"This is not a pipe dream. The polio vaccine is sold for several dollars in the U.S. and just a few cents in the developing world."

-- Treatment Action Campaign, South Africa

Tales of a "Mass Movement"

In the time-honored TAGline tradition, we will be dedicating this as well as the October issue to sorting through and processing the goings-on at the 13th International Conference on AIDS which, if you hadn't heard, was held on the African subcontinent this year, in Durban, South Africa, from July 9-14. As we did on the heels of the head-spinning Vancouver conference four years ago, TAGline sat down with those who attended the meeting (Mark Harrington, Gregg Gonsalves, Michael Marco, Yvette Delph) and tried to get a handle on the mini revolution Durban has firmly set into motion. The second half of the roundtable discussion will appear in next month's issue along with additional items from the conference.

Harrington: Mike Barr is interviewing us.

Marco: Barbara Walters, eat your heart out!

TAGline: Okay. Where to start? I guess I'd like to know what made the biggest impression on you in Durban. And what do you think the media back here in the states might have overlooked. Yvette?

Delph: I think it was a huge conference. Politically, I think this was groundbreaking. It was wonderful to see the level of organization and enthusiasm of the South African treatment activists and the participation of TAC [NB: Treatment Action Campaign, a growing activist movement based in South Africa; see accompanying article]. And to see the participation in the march that they organized. And to see the cooperation among the AIDS activists internationally and the participation by U.S. and other treatment activists from around the world in the TAC march. It was very, very invigorating to hear people like Winnie Mandela, Edwin Cameron and Nelson Mandela speak.

I think, like everyone else, I was disappointed over Mbeki's speech and his apparent dodging of the HIV issue and trying to put everything at the door of poverty. I think poverty and debt relief are important -- and crucial in solving the problem -- but I also think that those are very long-term strategies and there is lots of stuff that can be done to address the HIV/AIDS situation in the short-term which he does not seem to be willing, at least overtly, to talk about.

Marco: It was also really amazing to just be there and have so much interest, attention and media on AIDS which, while it is a huge problem in South Africa, it's not often addressed by everybody. For instance, I had amazing talks with cab drivers wanting to talk about AIDS and, you know, asking questions like, Should someone with HIV still be able to cook them dinner. And just basic questions we used to ask in the '80s and that some people still ask today in the U.S. But just doing some basic outreach and education, talking to them about Mbeki and what they thought. And I think also, I'll agree with Yvette, that the activism was great: seeing TAC grow and flourish at the meeting. Also, big-time AIDS researchers, everybody from Judy Currier to Trip Gulick to Julio Montaner, getting passionate and fired up and talking like an activist. You could see the fire in their eyes. And they really thought that something needs to be done and that this is going to galvanize them to start working on international issues. There were some absences from activists and from leading AIDS researchers that were disappointing. The data and scientific presentations and some of the oral presentations, you know, were mediocre.

Harrington: Not all of them.

Marco: Not all of them, but the politics and the fever that happened there totally outweighs a good or bad accepted oral presentation.

Delph: Some of the debates that occurred were particularly helpful and interesting. To mention a couple of them: whether HIV-infected women in the developing world could breastfeed; is anything less than HAART acceptable in countries with few resources? Julio Montaner was really good in that debate.

TAGline: My TAG cynicism -- skepticism -- would lead me to question whether a few months from now all these people having this Third World lovefest in Durban. . . . I mean it just seems like it will all dissipate and the local people will be left with a little, maybe, encouragement and maybe a few extra resources, but is there really going to be anything long-term?

Harrington: Mike, are you suggesting that the Durban feeling was just a mass hysteria that's going to wear off when people go back home to their lives?

TAGline: Well, yes, I think that's human nature.

Delph: Mike, I think it is human nature, but those of us who feel that strongly about making sure that it does not die down also have a responsibility to keep the fires burning here.

TAGline: What is Julio Montaner or Trip Gulick or Judith Currier, for example, going to do back in New York or Vancouver, you know, two months from now?

Gonsalves: Mike, I share your cynicism . . .

Harrington: Skepticism, Gregg, skepticism.

Gonsalves: Skepticism and cynicism. I think the whole meeting was a challenge to people, to researchers and activists alike, to actually look in the face at an epidemic of a proportion they've never seen before -- to see the reality of AIDS in the developing world. Different people are going to rise to the challenge in different ways -- and not rise to it. The challenges are enormous. Before we went to Durban, nobody could have predicted that the issue of treatment access in the developing world would have blown up to be such the hot button political issue of the meeting. Everyone said, "Vaccines, vaccines!" The vaccine advocates say that's the only answer to stopping -- or helping -- the epidemic in the developing world.

TAGline: I think that might just be your bias, Gregg. The people I talked with, who admittedly could be counted on the fingers of one hand, all said, "Oh, it's all going to be about access, it's all going to be about access." And dismissed it. A lot of the reason people didn't go to Durban was because they were worried it was going to be about access and pricing policies and politics. So I don't know. Was it really that big of a surprise? I mean, yes, it was surprising to see a full page spread in The New York Times about compulsory licensing and parallel import -- and some of Mike Waldholz's stuff -- but other than that, wasn't this all pretty much expected?

Harrington: I actually think the way the meeting was covered in the U.S. was very different from the way the meeting was experienced by the people who were there. And one of the things I noticed when I got home was that people didn't have a sense of the real exhilaration and inspiration that people got who were there. And when you would read the articles by Larry Altman, they might talk about some of these issues, but it was in a very removed way. Clearly, Larry and Mike W. didn't go to the march, didn't see the workshops the Treatment Action Campaign gave before the march, and they didn't really see the way that Edwin Cameron related to the Zulus in the audience, who were from the most hard-hit area in South Africa who clearly were responding on a political level to the need to mobilize their own government around treatment issues. That was really a mass movement, and was not something that was covered in the press here.

And so it's not just a matter of what people who went to the meeting and came back do, it's also the fact that there is this mass movement. There is incredible pressure on the drug companies. They've made a lot of promises now, but they haven't really started delivering on any of them. And there is the possibility that the pressure will be lessened, but I think that having made some of these promises they're going to now have to start figuring out how to deliver on some of them -- and so are other agencies that are going to have to start thinking about the infrastructure. In the meantime, there are people in parts of South Africa that are already moving ahead to implement programs like short-course AZT in mother-to-child transmission -- in the teeth of opposition from the government. And they're already getting substantial results, and it will be pretty interesting if in a year or two . . . as more people become aware of their HIV infection in South Africa (which is a middling resource setting compared to some of the other poor countries) and Brazil making the offer to help other developing countries with access to the generic antivirals that Brazil is making . . . is really putting unprecedented pressure on the global pharmaceutical industry. So things are going to happen. I don't think they'll happen fast enough.

Delph: I think you also need to include in that the kind of pressure that is being put on UNAIDS and the various member organizations like WHO and the World Bank. I think a lot of pressure was put on them at Durban. Many of the agencies came to say basically, "Look at what we've done. We've done a whole lot." And we basically said, "You've not done enough."

Gonsalves: There are also research challenges, Mike, that we have focused on that took on a new twist in Durban. We've talked about long-term effectiveness research over the past 18 months, about when to start, when to switch. There are questions about: How are things being implemented in mother-to-child transmission protocols and how have they been evaluated? How do you tell what works on the "ground" in resource-poor settings? Which hasn't been part of our effectiveness agenda, but it is, it's definitely post-marketing research, but it's not the kind of post-marketing work researchers are used to thinking about.

Delph: Even the long-term effectiveness research and its relevance to the developed world also has major implications for the cost effectiveness in developing countries. Because if we find, in fact, that we don't need to start . . . that it's better to start antiviral therapy when the CD4 count is 250 or 300, that translates into major cost savings not only for the developed world but for the developing world.

Gonsalves: On the skeptical side of things, Mike, there are a lot of Saul-on-the-road-to-Damascus conversions happening in Durban to people for whom [access and equity] haven't necessarily been issues, but then all of a sudden you get there and you decide that that's where the world should be focusing its fight.

TAGline: I mean, out of all these . . .

Delph: Mike, Mike, before you go on, I would also like to draw the analogy between, for me, attending Durban this year and attending the Beijing Women's Conference in 1995.

TAGline: Okay.

Delph: Because there was a lot of the same kinds of criticism: "We spent so many millions of dollars to bring women and governments from all over the world. What is it really going to mean?" What did the Cairo Conference in 1994 mean?

TAGline: Cairo?

Delph: The women's conference is an international conference on population and development.

TAGline: Okay, Cairo '94. Beijing '96?

Delph: '95. And I think that five years later we've seen that what it has meant is that grassroots women and organizations have come together, that they have proliferated, that they have met with greater understanding of their basic rights from the people -- whether as women or rights in terms of reproduction. It has meant that there is pressure on governments to ensure that people know these rights, that these rights are enshrined in legislation and in practice. There has been a tremendous pressure, for example, to address issues of bride burning, of female genital mutilation, all kinds of things. And it has brought both to the fore as issues and the pressure has been maintained, and I think that progress has been made. I don't think enough progress has been made, I think that [the governments] are nevertheless at this late date trying to back out of certain commitments. And funding for these programs is still a big issue. But at the same time, I would not want to minimize the impact that those conferences have had.

TAGline: I don't mean to minimize the impact of the meeting. We [Aid for AIDS] had a conference in Venezuela a couple of years ago. Maybe it's apples and oranges, but the one thing that did come out of that weekend after the feel-good wore off was the networking that goes on, the transfer of experience and "technical assistance," whatever you want to call it. And there are two or three activist groups there in Venezuela today that either didn't exist before or are much stronger now. So I think that's something that conceivably could be a lasting legacy of the meeting.

Delph: And the knowledge at the end of the day that you are not alone out there. And that there are others out there who are interested in helping -- who you now know and have contacts with and can maintain that contact. I think together we can do so much more than each of us can do individually.

Gonsalves: Mike, I think it's also about witnessing, about being a witness. It's not so much about what we did there but what we witnessed. We saw a Supreme Court justice get up who is gay and HIV-positive in a country where people get murdered because they are HIV-positive. We saw poor people who probably go home . . .

TAGline: But isn't it relatively easy for a well-to-do white man to stand up and come out as HIV-infected? It seems a little . . .

Gonsalves: But it wasn't easy for the black African men and women we saw, who probably go home to fairly squalid living conditions, to come out and to protest and to demand treatment and to wear T-shirts that said they were HIV-positive. They identified themselves publicly as positive in a country where people get killed for that.

Harrington: And I'm not sure it is that easy for white gay men to come out in certain countries, and I wouldn't make that assumption right off the bat.

Delph: And I also think . . .

Harrington: Wait, wait, wait. I want to make this point. It might be easier for Judge Cameron to make that point than for someone in KwaZulu Natal who's going to go back to a township and might get beaten, but it's also . . . when somebody takes on their government like that, it's a very brave thing. And I don't think we should just discount it and say, "Oh, it's just another white man coming out with HIV." We know a lot of activists who are relatively privileged, and they haven't come out in certain settings in their own countries in the North.

Marco: Look at Elizabeth Glaser or Mary Fisher in some ways. You also saw, just recently, some very prominent family, I don't know the name . . .

Harrington and Delph in unison: Sisulus. [NB: Walter Sisulus was an ANC colleague and prison-mate of Nelson Mandela.]

Marco: They admitted that a death in their family was due to AIDS. That would have never happened if it weren't for Cameron and this conference. I mean, those are wild steps.

Delph: I think you also need to remember South Africa had its history of apartheid. It also has its history of whites who have fought apartheid, but you're also seeing here a white gay man who, yes is in a privileged position, but he's also fighting now for access to HIV drugs for a majority black population.

TAGline: Uh-huh.

Gonsalves: The more moving thing to me was seeing people . . . The AIDS activist movement in the U.S. largely started from, yes, privileged white gay men who were either dying or saw their friends . . . [But here you have] people without a lot of social privilege doing something in a fledgling democracy with a huge burden of HIV stigma, . . . black men and women from townships coming out to the cities and doing this and saying, "I'm HIV-positive and I want treatment. . . ."

Harrington: And getting help from their labor unions and . . . there are a lot of aspects of their mass movement that are impressive in ways that we were never able to achieve here [in the U.S.]. The fact that the unions were there, several political parties that are in opposition to the ANC were involved. There really was a mass feeling to the demo that I think was maybe only comparable to when . . . Mike, do you remember when the Haitians took over Brooklyn Bridge?

TAGline: '90? '91?

Harrington: There was a truly mass kind of demonstration about . . . I think it had something to do with a government proposal for mandatory testing.

Marco: Also, Mike, to hear Nelson Mandela speak . . .

Gonsalves: It's weird, Mike, because I heard Edwin Cameron speak, and Fauci said it was the best speech he had ever heard at an AIDS conference, and I thought it was great. And then on the last day of the conference, to hear this guy whom everyone has admired and is probably one of the greatest men of the twentieth century speak . . . but also make this extremely skillful, powerful speech where he was able to tell the West to get off Mbeki's back about the etiology of HIV and to say that the debate was irrelevant in the face of the suffering of millions of his countrymen and women and that he did have to face the challenge of treating opportunistic infection and preventing mother-to-child transmission with AZT or nevirapine.

Marco: The fact that Mandela used the words "safe sex" and "condoms" and used the term "opportunistic infection" -- I mean, he got press worldwide. I don't think we understand how huge that was, even though Mandela might have bloody hands for not doing enough under his reign.

Gonsalves: And also, Mike. . . . We heard George W. Bush last night give this flaccid stump speech. . . .

Harrington: You did. I didn't.

Gonsalves: . . . to give this really flaccid stump speech filled with every political platitude in the book, then to hear Mandela talk about compassion and dying and invoke his own death. . . . You know, he's 82 years old and he talked about his own mortality and the need to approach people with AIDS with compassion and love. For him to say that to his country was really moving to watch. It was definitely the best international conference I've ever been at.

Back to the TAGline September, 2000 contents page.

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