More than 20,000 people have come from all over the world to attend this year’s conference. When you’re trying to maneuver through the throng hustling between the exhibition center, session rooms, poster displays, media center and Global Village, it seems like a lot of people. But given that there are more than 33 million people worldwide living with HIV/AIDS, it hardly seems a big enough delegation. The conference is housed in a massive glass structure overlooking a horse racing track and the Global Village is set up under giant white tents in the track’s infield. The Global Village is the hub of activism-where NGOs and CBOs from all over the world as well as grassroots activist groups, artists against AIDS and networks of people living with HIV (including POZ! We have a booth there and are photographing and video-documenting the stories of positive people-if you’re here at the conference stop by booth #200) congregate. Getting between the various far-flung corners of the conference is a workout. I think I may have walked close to 15 miles already...judging from the searing pain in my calves it might be further. But it’s so exciting to be among so many amazing people from all around the globe that the adrenalin powers you through.
Each IAC has a different flavor and emphasis. This year’s theme is “Universal Action Now” and I must say that there does seem to be a feeling of immediacy and ferocity around the activism here. That’s the good news. The bad news is that there is sense of needing direly to respond because we seem to be losing a grip on our upper hand on AIDS. From the fact that there are hardly enough health workers around the world to administer the care we need (Medecins Sans Frontiers gave a rousing report on how difficult it is to keep healthworkers around when they a paid a mere fraction of the cost of the medicines they are administering) to the ongoing criminalization and human rights violations that continue around the world (case in point: the missing pair of HIV doctors, Arash and Kamiar Alaei in Iran) to the shocking revised numbers of HIV incidence in the United States (released Saturday by the Centers for Disease Control and Prevention) that show that severe spikes in the numbers of new HIV infections among African-Americans and gay men, it is clear that universal action is essential right now.
I was sitting in the “People Living with HIV Lounge” yesterday with an HIV- positive woman from Norway. She’d been given a fan (created by aidshealth.org) at the opening ceremonies. It read: “10 Million on ARVs by 2013; AIDS Treatment Now.” As she unfurled the fan and showed it to me, she said, “2013 is too late. Way too late.” That pretty much sums up the overriding tenor of this conference. There is no tomorrow for too many people and while I recognize that we can’t wave a wand as she was waving the fan and address all the issues we need to with AIDS, it is incredible to me that in 2008, we are still having many of the basic discussions that seemed appropriate for the beginning of the epidemic but that seem frustratingly overdue for being solved now.
I arrived last last Wednesday night having come early to participate in the pre-conference Living 2008 Positive Leadership Summit (PLS)-an incredible gathering of almost 400 HIV-positive activists who traveled from 88 countries to gather and discuss key issues for the leadership of HIV-positive people around the world. The PLS is the brainchild of the Global Network of People Living with HIV (GNP+) and it has been held periodically in different locations around the world since 1986. The idea of the summit is to bring together HIV+ people in a safe and empowering environment in order to strengthen the PLHIV movement. The objective of this year’s summit was to ensure sustainable positive leadership on the following advocacy priorities: universal access to treatment, care, support and prevention; criminalization of HIV transmission; positive prevention; sexual and reproductive health rights; and leadership.
Many amazing activists spoke at the summit including: Anuar Luna, a Mexican HIV positive activist and co-founder of the Mexican network of People Living with AIDS; Deborah Williams, chair of the board of the Global Network of People Living with HIV/AIDS; Kokouvi Augustin Dokla, president of Togo network of People Living with HIV/AIDS and member of the Red Cross and Red Crescent PLHIV network and Beri Hull, global advocacy officer for the International Community of Women Living with HIV /AIDS (ICW).
At the opening ceremony, Anaur Luna spoke of the need for new HIV-positive leadership from all sectors, especially those from the most marginalized groups of people or countries. “In order to be a leader, I first had to go through a process of dealing with shame and guilt. After I was at the International AIDS Conference in Toronto, a feeling of survival prevailed and I [embraced the] possibility of letting go of my shame and adopting the idea that I had rights.” He spoke of his own experience of stepping forward as a person living with HIV and said that after his first appearance on CNN, his mother called and said, “I am very proud of you and very proud to be your mother.” It was so encouraging to hear that even in Latin America where the effects of stigma may be severe, people who disclose their HIV status and stand without shame can be supported by their families, friends and society.
Dr. Peter Piot, executive director of UNAIDS, opened his talk by saying that he was at the summit because he believed “this is the most important pre-conference event in Mexico.”
Regarding his support of the PLHIV movement, he said, “The epidemic is about people, not figures and without [involving] the movement of people with HIV, we can’t solve the epidemic. Social change goes beyond the bureaucratic approach. The people who are living with HIV have the answers. That’s what’s often totally ignored and why attempts to fix AIDS are failing.”
Yet, he also acknowledged our progress to date. “For the first time in a 27-year history we have results on a scale never seen before,” he said. “It is important to recognize it, but not declare victory whatsoever. In any social movement, if we don’t recognize what we have achieved, it will be hard not to be overtaken by burnout. We must also learn from our mistakes and figure out what to do better.”
He remarked on the passing of the new funding levels of the (U.S.) President’s Emergency Fund for AIDS Relief saying, “The White House committing to $48 billion ($38 billion on AIDS) is an historic event. But my main concern is to sustain and expand the movement and the essential elements are money and leadership dedicated to AIDS.” He advocated for aiming high: “Without a bold agenda we won’t go anywhere because reality is always lower than our goals.” He said it makes him angry when people say we are spending too much money on AIDS. “Three million people are on [treatment] but 6 million are not so it’s not enough money yet. We can not be content until the last person living with HIV has treatment. But we all know that that’s not possible overnight.”
On the issues of stigma and discrimination he said, “We can’t accept that there will be ’a little bit’ of stigma, ’a little bit’ of discrimination. [Getting rid of them] is non-negotiable. I thought when we had widespread access to treatment, stigma and discrimination would be reduced. But it didn’t happen. That’s because stigma has nothing to do with AIDS; it’s about how we feel about sexuality and how we should live. Even when there are good laws [to protect people living with HIV] they’re not enforced. Until we imprison people who discriminate, a society is not serious about ending it.”
He spoke of how we need to drum up new positive leadership especially among “sexual minorities,” women and young people. “My call to you is one of unity and diversity. There are attacks on the AIDS movement coming from all sides. There are technocrats who don’t believe they need to involve people living with AIDS in the solutions to the epidemic. Health systems alone are not the answer.” He recommended partnering more closely with human rights activists around the world and said that the issue of accountability is important not only for governmental agencies but also for the community itself. Measurability and sticking to timelines, he suggests, help secure funding.
He assured us that though he soon will step down from his post that “the importance of positive leadership is core to [UNAIDS’] philosophy and won’t change no matter who the executive director is.”
Finally, he said, “Working on AIDS have never been a job for me, it’s been a life and I can’t imagine a life without fighting for justice so you can continue to count on me.”
See my interview with Dr. Peter Piot below.
At the end of the two-day session, rather than offering a minute of silence to pay hommage to all who have passed, there was a minute...well, several minutes...of full-throated yelling at the top of our lungs. After all the incredibly intense strategizing, it felt fitting to give voice to the frustrations that can’t help but be stirred by dissecting the state of AIDS around the world today. It was, no doubt, a rebel yell.
Well, I’m off to the session at IAC that will highlight the work we did at Living 2008. The session is, very appropriately, called “Reclamining Our Lives.” I believe, and hope, that indeed the international community of people living with HIV hold the answers to how we might end this terrible epidemic one day.
Later this afternoon, I will interview Kevin Moody, head of GNP+, so please visit our IAC conference coverage page at poz.com in the next day or so to hear Kevin’s take on the state of HIV-positive leadership around the world.
(For more information on the Living 2008 Summit, you can visit living2008.org.)
Adios!
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