In the news ... 2006 archive

Day Five in Toronto: PLWHA, Activists Press the Agenda

August 18, 2006
by David Munar, Associate Director for Policy and Communications, AIDS Foundation of Chicago

HIV-positive advocates demanded swifter actions against the AIDS pandemic and asserted their central role informing anti-AIDS strategies as the 16th International AIDS Conference drew to a close.

At scientific presentations, press conferences, and plenary sessions, HIV-positive people and their advocates challenged governments, pharmaceutical companies, and fellow conference attendees to restore urgency to the HIV/AIDS fight and hold governments and each other accountable for reaching established prevention and treatment goals.

“We are at a terrible anti-political moment right now,” warned Gregg Gonsolves of the AIDS and Rights Alliance for Southern Africa. “The powers-that-be have taken our rhetoric and told us that everything is fine: ‘we’re on your side—you can demobilize and leave the epidemic to us.’ That is the pernicious message of this conference. Don’t believe a word they say.”

South African AIDS advocates stormed a press conference Wednesday to demand a more visible role for HIV-positive people in the conference.

“This has been a conference more about philanthropists and celebrities than people living with HIV/AIDS,” said Sipho Mthathi of the Treatment Action Campaign of South Africa. “Is this a Hollywood conference or an AIDS conference? Where are the HIV-positive people?”

While acknowledging the important contributions of Bill and Melinda Gates and former President Bill Clinton, advocates said the intense spotlight on celebrities at the conference should not diminish learning from ordinary people struggling against the epidemic.

“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,” said Gonsalves. “The seduction of the money and power they represent have blinded us to what they’ve really delivered.”

Fire Manto!

On Thursday, AIDS advocates joined plenary speakers on the stage to demand the resignation of South Africa’s Minister of Health, Manto Tshabalala-Msimang, who sat nearby in the audience.

Calling South Africa’s HIV/AIDS crisis a human rights violation, plenary speaker Mark Heywood said Tshabalala-Msimang has stalled treatment expansion, put ARVs on par with traditional therapies (such as garlic and olive oil), and obstructed treatment access for prisoners. Tshabalala-Msimang is part of President Thabo Mbeki’s government, which has publicly questioned whether HIV is the cause of AIDS and characterized antiviral medications as poison.

Heywood accused the Mbeki government of “anti-leadership” and said his call for Tshabalala-Msimang’s resignation is in solidarity with the millions of HIV-positive South Africans who lack treatment access and face a certain death. According to national figures, an estimated 800 people die of AIDS everyday in South Africa and only 17% of the 5.5 million people living with HIV/AIDS have access to treatments.

Heywood asked the world community to put pressure on South Africa to invigorate its anti-AIDS response. He also urged everyone to advocate for respect of human rights as a central HIV issue and press the nations of the world to develop bold HIV prevention and care targets as part of the United Nation’s statement of commitment recently signed in New York.

“This is not a matter that should just preoccupy activists but to every healthcare worker,” said Heywood. He urged everyone to press for national and international accountability toward measurable goals. AIDS-related meetings risk becoming little more than “glorified talk-shops” unless they catalyze actions to move forward, he said.

Thinking Positive
American and French researchers, presenting papers on a panel entitled “Thinking Positive: The Role of People Living with HIV in Prevention Initiatives,” were widely criticized Wednesday for not involving more HIV-positive people in their study designs and presentations. Audience members voiced concerns that the research projects focused almost exclusively on promoting HIV-status disclosure and pregnancy avoidance.

French researcher Bruno Spire presented data showing 5-9% of HIV-positive heterosexual women and men who have sex with men (MSM) surveyed had not disclosed their HIV-positive status to their steady partners. The study found frequent sexual risk-taking, especially among heterosexuals, and concluded that disclosure should be promoted.

Regarding its Botswana study, Physicians for Human Rights said antiretroviral access programs can increase HIV-status disclosure and safer sexual behaviors. Another study, conducted in Malawi, found a decreased desire to become pregnant (33% to 14%) among women a year after learning their HIV-positive status. Lead investigator Irving Hoffman of the University of North Carolina said disclosure was found to promote “responsible behaviors,” widely interpreted to mean a disinclination to become pregnant.

“Why should disclosure be an end point?” asked Kevin Osborne of the International Planned Parenthood, UK. “With criminalization, stigma, and discrimination, many people may not be inclined to disclosure their status, and disclosure does not, in and of itself, mean people are using condoms or taking other precautions. This is basically a medical approach that puts the onus entirely on positive people. Why not talk about all people—positive and negative—taking responsibility for prevention?”

Osborne asked Spire whether his study had explored the rate of rejection or break-ups resulting from disclosure—it had not.

“If it (disclosure) happens, that’s great; but it shouldn’t be the goal,” he said.

Osborne and others said researchers should explore ways to increase condom usage and other risk-reduction strategies among HIV-positive people. Others said studies on social, psychological, and biological factors, including serosorting and decision-making based on viral load, should have been addressed in the session. In addition, presentations should have been led by HIV-positive people.

“A couple of times, it just felt like we were tokens. We have experiences we want to share,” said Peter Lindholm, chair of a positive coalition in Sweden. “We were not satisfied. We like the topic but the fact is they weren’t really talking about the involvement of people living with HIV/AIDS.”

“Now we are living with HIV and can help,” said Oyvind Valle of Norway. “But this is like we were just victims.”

Openly HIV-positive Andy Seale of UNAIDS, who co-moderated the panel, also expressed disappointment. “There was almost an assumption that it (disclosure) results in rejection and no sex acts,” he said. “Disclosure is not a prevention tool.”

Searching for Miles White
Hundreds of PLWHA and advocates banged drums, blew whistles, and chanted as part of a march through the Global Village to protest the high cost of a reformulated version of Kaletra, manufactured by Abbott. They also distributed leaflets that read “Wanted: Miles White, Abbott CEO, for Criminal Negligence.”

During the Thursday afternoon protest and subsequent media briefing, officials with the Treatment Action Campaign and the Student Global AIDS Campaign (SGAC) accused Abbott of “too little, too late.”

“People living with HIV/AIDS and their allies have been calling on Abbott for several years to make its drug Kaletra—now known as Aluvia—available and affordable in Africa and developing nations,” said Matt Kavanagh of SGAC.

Kavanagh said that Abbott’s recent announcement to lower Kaletra’s price in middle-income countries to a maximum $2,200 per year per patient would still prove too costly for hundreds of thousands of people in countries such as Mexico, which is hosting the International AIDS Conference in 2008. The medication, considered essential in second-line regimens, has been reformulated into a heat-stable version that is considered more practical for developing, tropical nations where refrigeration can be difficult to assure.

“This is an essential drug that many people need now across Africa. It has to be made more accessible,” said Dr. Francois Venter, President of the South African HIV Clinicians Society.

“The real and practical issues facing people living with HIV/AIDS, like second-line therapy access, are not being addressed at this conference,” said Treatment Action Campaign’s Mthathi.

Abbott officials were not available for comment.