Emma Tuahepa and Frank Guni. Rep Waters. Gregg Gonsalves.
The XVI International AIDS Conference, the world's largest HIV/AIDS meeting, took place Aug. 13-18 in Toronto. David Munar, associate director of AIDS Foundation of Chicago, attended the conference and recorded his view of the goings-on exclusively for Identity.
Day 1 ( Aug. 13 ) : After a bewildering couple of hours figuring out the endless conference-center maze, pushing through the crowds and rifling through the more-than-400-page conference program, I decided it was time for a break and headed to the posh PWA Lounge.
The swank space is set up for comfort. Smartly decorated in earth tones, modern furniture and strategically-placed throw rugs, the space is inviting and resembles a hipster bar. Comfy couches and reclining chairs offer patrons mini-living-room settings to rest their legs, chat and meet other people living with HIV/AIDS attending the conference.
Soft background music and arrangements of plants and flowers set the ambience, lit with a soothing, soft light. You might confuse the space for an upscale furnishings showroom if it were not for the strategically placed bins of free condoms.
Wandering around, I recognized an old friend and we took to the nearest couch to catch up. Frenk Guni, international affairs director at the National Association of People with AIDS ( NAPWA-US ) , told me he hoped the conference would yield greater partnerships in response to global AIDS. Guni noted that this year's conference had drawn several faith-based exhibitors addressing tough issues like treatment expansion, stigma, and efforts to reach vulnerable populations, which he found encouraging.
I inquired about the PWA Lounge. 'I think it's great. I wish I lived here. As a PWA, it makes me feel important,' he said.
It's important for PWAs to having dedicated spaces to meet, network, rest, hydrate, and share their experiences with other PWAs from around the world, he explained.
Of the fancy décor, Guni mused: 'It makes you feel alive! This is not a lounge just for sick people—it captures the spirit and will to live.'
A group of Namibians were sipping water in the comfy couches next to us. Emma Tuahepa, an energetic young woman from the Namibian capital of Windhoek and the first person in her country to publicly declare her HIV-positive status, told me she hoped the international conference would advance universal-access goals recently set at the second UN General Assembly Special Session on HIV/AIDS.
While not having any contact with Namibia's most famous new citizen, Angelina Jolie and Brad Pitt's baby girl, Zahara, Tuahepa felt proud that the celebrity couple chose to highlight her country's competent healthcare system.
'We proved Namibia can provide the quality of care needed to deliver the most beautiful baby in the world! I would like to invite more celebrities to come to Namibia. Ours is a small but beautiful country, and we have good health facilities,' she said.
Day 2 ( Aug. 14 ) :
Saying it was time to 'take the gloves off,' Congresswoman Maxine Waters, D-Calif., said today she plans to support mandated HIV-testing policies for inmates entering and existing correctional facilities.
'I'm concerned about people dying. We're not taking new actions to deal with this problem. We talk about stigma but we're not doing anything differently. I'm tired of going to these conferences,' she said.
Waters made her remarks as part of a press conference hosted by the Black AIDS Institute to launch its 'Declaration of Commitment,' a new campaign designed to mobilize African-American community leaders in efforts to reverse the escalation of cases among Black Americans by 2011. Waters said her position on mandated prisoner testing is part of a renewed belief that 'everyone needs to take responsibility.' Her proposal, still in development, would test all new inmates; link prisoners and ex-prisoners to HIV prevention and care services; and determine whether HIV-negative inmates become infected while incarcerated by requiring testing again upon release.
Waters also said she is reviewing HIV-testing policies for pregnant women and newborns, particularly 'opt-out' models that provide testing unless it is refused. 'I still have some reservations about opt-out,' said Congresswoman Donna Christian-Christensen, D-V.I., chair of the Congressional Black Caucus' Health Braintrust and a physician. 'Is it still necessary? Everything says that if you offer people access to testing, they accept. That's why counseling is so important; we should not be doing this on the cheap.'
On prisoner testing, Christian-Christensen said she would be inclined to support stronger mandates for correctional facilities, requiring them to routinely offer voluntary testing and make HIV treatments, prevention education, and condoms widely available. 'If we could get to that point, it would be a good thing,' she said. 'Our official position is we oppose mandatory testing in all cases, including in prisons, but I think we'll be revisiting this position and I don't know where we'll go,' said Phill Wilson, the Black AIDS Institute's executive director.
Day 3 ( Aug. 15 ) :
The National Minority AIDS Council invited me to make brief remarks today at a Gilead-sponsored satellite session on the question of 'shifting paradigms: What we should be doing differently in HIV/AIDS work?' Below are my prepared remarks.
As a longtime AIDS activist, I believe there's an enormous difference between what we should be doing differently and what we simply have not been able to do enough of.
I'm speaking, of course, about the major topics of this conference, including massive expansion of condom and sterile syringe availability campaigns; comprehensive sex education; risk-reduction services; social marketing; structural interventions; policy development; testing, care and treatment; broad-based awareness campaigns; community mobilization; government and media engagement; accelerated research … and the list goes on and on.
Far too often, our work must focus on overcoming the institutional barriers from governments, donors, and corporate interests that obstruct scarcely any progress at all on these core activities. Not much has changed in this regard in the 15 years I have been doing this work. If anything, the challenges have only increased.
As a longtime survivor, I have a different perspective regarding what we should be doing differently. I tested positive in 1994. I was 24 years old and found myself quite scared, confused and alone.
Working in HIV/AIDS provided only partial refuge from experiences of external and internal stigma. At times, being in the field only compounded my sense of isolation. But it did afford me access to mountains of information and ways to channel my feelings of anger, rage, and fear. And yet, I marvel at how ill-prepared I have been to cope with life as an HIV-positive person.
There are woefully few resources available for HIV-positive people to help them cope with issues like disclosure, family, relationships, dating, sex, prevention, emotional health, legal protections, nutrition, health promotion, co-infections … the list goes on and on. In the U.S. we're doing a little better at helping positive people understand and navigate care and treatment, but the gaps here also remain enormous, especially for injection drug users, commercial sex workers, and people marginalized by poverty, no healthcare coverage, addiction, co-infections, geography, homelessness, nationality, race, gender, age, homophobia, domestic violence, and language/literacy abilities.
People living with HIV, especially the newly diagnosed, need more peer services, more education and more safe spaces to gather and share their fears, their hopes, their challenges and their coping skills. Mostly, PLWHA ( people living with HIV/AIDS ) have gone it alone and used trial-and-error to learn to live better lives with HIV and help our family and friends cope.
You might consider the vision I have articulated as 'positive prevention,' but this does not resemble the prevention with positive programs I have seen in my community. What good does it make to use prevention case management to assess that a positive person needs help with disclosure, relationships or depression if there are no local services available to assist him or her with these very needs?
Affected communities ( MSMs, youth, people of color, girls, sex workers, etc. ) also need more robust peer services, safe spaces and coping skills.
I fear that if we continue to address HIV/AIDS merely as a physical/medical condition, we will not make any progress against the epidemic. Of course, an HIV diagnosis should be no different than living with diabetes, arthritis, heart disease or cancer. But the reality is that AIDS is treated differently in society. People are fired, evicted and ostracized because of their HIV status. The same cannot be said of many other chronic health conditions.
Testing is not enough. Knowing one's HIV status is not enough. Learning one is HIV-positive is not enough if we fail to address HIV as a social disease.
Policies that increasingly prioritize testing and medical interventions over prevention education, risk reduction and structural interventions will backfire. Scores of trusted community agencies are being forced out of business because donors increasingly only want to fund testing and medical services. The result is at-risk groups increasingly have no place to gather and receive the types of help and support they so desperately want and need.
Within U.S. communities of color and in the developing world, the situation is markedly worse. In my own Latino community, the silence and stigma around AIDS—and the populations it affects—is deafening.
'Scaling up' prevention, care and treatment will require aggressively battling stigma in our societies and arming people living with HIV and those at risk with the tools to mitigate and cope with stigma and discrimination.
What should we do differently? Demand that AIDS work address the social impact and social settings where risk occurs and intensify services to help positive people cope and be stronger partners in the fight against HIV/AIDS.
Day 4 ( Aug. 16 ) :
As HIV/AIDS expands in a world increasingly divided by levels of affluence or extreme poverty, the dynamics of 'north/south' have emerged as a recurring theme at this week's 16th International AIDS Conference.
The growing divide between developing nations and industrialized countries took center stage today as Kevin De Cock of the World Health Organization ( WHO ) recounted progress expanding HIV treatments in the developing world. Unfortunately, the achievements fall far short of the WHO's goal to treat 3 million people by 2005.
Addressing the 'north and south' dimensions of HIV/AIDS are not the only geographic challenges facing the estimated 24,000 delegates. Conference participants must also contend with the vast distances occupied at the Metro Toronto Convention Centre for the international gathering.
The 64 meeting rooms and exhibit halls in the Convention Centre occupy more than two million square feet of space in two towers in downtown Toronto. Train tracks in a wide, open field separate the two buildings. An elaborate maze of escalators, narrow hallways and bridges connect the two facilities, which hardly seem connected at all. Long waits at escalators and crowded pathways are common. Getting from one building to the other is easily a 10- to 15-minute trek even at a brisk pace.
The great distances between the north and south buildings are not the only similarities to today's AIDS pandemic, which claims nearly 3 million lives annually, overwhelmingly in the developing world.
One facility—the south building—hosts the large daily plenary sessions for more than 2,000 participants. Prominent scientists, health officials, philanthropists and politicians have graced its stages. Virtually all scientific presentations take place in its cavernous session rooms, equipped with cameras, microphones, projectors and podiums. The major pharmaceutical companies and aid groups, like UNAIDS, occupy private meeting spaces for their employees here. Corporations, national delegations, and large AIDS groups distribute literature and give-aways from their elaborate exhibits in the main exhibit hall, which also hosts hundreds of scientific posters every day.
The south building is clearly emblematic of the corporate and academic establishment working on HIV/AIDS. The notable exception is the relatively smaller PWA Lounge located at the far end of one of the mezzanine floors.
The culture of the north building is markedly different. It houses the numerous skills-building session rooms and a large exhibit hall with meeting areas devoted to various regions of the world, affected populations, and focus areas in the epidemic. Open to the general public, the 'Global Village' is a market place of ideas and activism. At any given time, divergent groups host round tables and fireside chats, predominantly led by peers and activists, about issues as diverse as safer-sex training sessions, treatment literacy, and cultural and artistic issues. Few spaces in the Global Village are equipped with microphones and even those that are can hardly broadcast over the music, chatter, and applause generated by thousands of people. Lay activists and PLWHA have clearly claimed the Global Village as their own.
The media center, perhaps the most critical space for shaping public opinion, sits in a pit below the pathway connecting the north and south facilities. Throughout the week, groups of activists representing various interests have taken advantage of the strategic location, organizing rallies in the narrow pathway high above the hundreds of computer stations, broadcast terminals and official pressrooms. The strategy has mostly worked, drawing photographers, reporters, and camera crews away from their terminals to briefly record the signs and sounds of the protests.
The distances between buildings are so great that many delegates have refused to make the lengthy journey, preferring instead to spend their days in one facility or the other. In this regard, conference organizers have truly matched the fractious and parochial nature of present-day responses to the AIDS pandemic.
Day 5 ( Aug. 17 ) :
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.
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 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.
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.