Voices of HIV-positive were missing at their own conference

By Anindita Ramaswamy Aug 18, 2006, 1:40 GMT

Toronto- The voices of people living with HIV/AIDS were muted or often missing this week at the world's largest ever AIDS conference in Toronto, a grand circus of an event meant to address their rights and unique needs.

Over five days, through hundreds of back-to-back sessions attended by 24,000 people, those most impacted by the raging epidemic were poorly represented. This despite the well-known fact that AIDS programmes cannot make a difference without the intimate involvement of people living with the disease.

'What would be the difference if women were in charge of the AIDS response?' asked human-rights campaigner and former Irish president Mary Robinson, before answering her own question

'It would mean women would be in charge of the world. It would mean that girls wouldn't be getting infected. It would mean that health would be treated as a human right,' she said.

'And it would mean that poverty would be tackled because military budgets would be slashed.'

In Toronto, however, when HIV-positive women were given an opportunity to speak at official events, it was often mere tokenism. The same was true for other groups vulnerable to HIV.

'There seems to be little space to really learn from the experience of the positive young girls, women, men who have sex with men, people who inject drugs and sex workers who are today's faces of HIV/AIDS,' an editorial in a conference newsletter by UK development communication agency Panos said Thursday.

'They know what drives this epidemic intimately, and are already finding innovative responses. Why are we not listening?'

Of course people living with HIV/AIDS were present in large numbers at the conference, but their forum for free expression was in spaces away from the formal agenda.

They were part of the protestors demanding universal access to drugs, sex worker's rights and more government accountability. They were eager to share their stories and offer their perspectives on prevention strategies that worked.

Gregg Gonsalves of the AIDS and Rights Alliance for Southern Africa was scathing in his criticism of the 'often misdirected energies and efforts, and the paralysing effects of the international AIDS bureaucracy.'

'We've created a system designed to fail. Yet, in the margins of this system, there remain men and women who are largely forgotten, unknown, ignored or reviled by those who make this machine run,' he said.

The highly-publicized conference being covered by an estimated 3,000 journalists had its share of celebrities, such as former US president Bill Clinton, Microsoft boss Bill Gates and activist-actor Richard Gere.

Clinton and Gates have donated billions of dollars to combat the spread of AIDS through their foundations. They spoke eloquently at several sessions of the need to improve access to treatment and end discrimination against people living with HIV/AIDS.

'It's not Bill Gates or Bill Clinton who have made a difference in this epidemic despite their welcome to this meeting as some sort of royalty,' Gonsalves said. 'The seduction of the money and power they represent have blinded us to what they've really delivered.'

Activists said the main AIDS response lies in the hand of the people most affected - marginalized communities across the globe such as women, the poor, sex workers, drug users, migrants, prisoners and gay men.

Frika Iskandar, an HIV-positive woman from Indonesia who also spoke at the opening ceremony, criticized the international community's preoccupation with buzz words and jargon like 'stigma' and 'discrimination.'

'It's been there more than 20 years. Instead of saying 'reduce the stigma', let's just learn how to live with it,' she said.

'There is no point in reducing it, because that won't happen. I have overcome this issue of stigma and discrimination because I learn how to live with it, fight it and demand my rights.

'What will it take to empower all of us? Let's move from 'reducing the stigma and discrimination' to the 'true involvement of people living with HIV/AIDS',' Iskandar said.

'But let me be clear. Empowerment or involvement is not just giving a testimony. I don't need to just be listed in a report of a meeting. I want to be more involved.'

The Panos comment noted that there was too much focus on the medical aspects of the epidemic, and not its social, cultural and political ramifications. It questioned who was really setting the agenda for these meetings.

'We had groups like the Treatment Action Campaign from South Africa really rallying around us and organizing protests, making our voice for cheap drugs and better treatment heard,' said Gayle Erasmus, an HIV-positive South African.

'Look at the presence of the big pharmaceuticals at this conference. They dominate the exhibition hall. The scientific and technical sessions sidelined us. That is the main problem with the AIDS response,' Erasmus added.

Speaking about the next 25 years of the epidemic, Peter Piot, executive director of UNAIDS, said: 'An AIDS response that is not as embedded in advancing social justice as in advancing science is doomed to failure.'

The next conference is to be held in 2008 in Mexico City.