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The Challenge of Barcelona

January 2003

Forty million infected with HIV; five million dead in 2001. Fourteen million children orphaned. And, perhaps most startling, the prediction that seventy million people will have died by 2020 unless there is decisive intervention. The horrifying numbers that describe the international AIDS pandemic provided the backdrop for the 14th International AIDS Conference in Barcelona. It is easy for numbers like these to paralyze those of us who live far from where the epidemic is taking its most deadly toll -- in places where HIV treatment, care and prevention programs are more generally available. We wonder what we can possibly do in the face of so much suffering and death.

The message of Barcelona, however, was that we can do something, and, in fact, we must. The tools for addressing the epidemic exist, even if the political will and funding are seriously lagging in most countries throughout the world. Everyone has a role to play and those of us living in the US and other rich countries need to hold our leadership accountable to the fight against the epidemic. All of our actions, from the personal to the political, can make a difference.

The international conference convenes every two years. It is an opportunity for scientists, community members, government officials, clinicians, health experts and others from all over the world to come together and assess the state of the epidemic. For many years the conference focused on the science that drove treatment, care and prevention efforts. While that continues, the conference in Durban, South Africa two years ago saw the emergence of another area of strong focus. It was clear in Barcelona that the state of the epidemic in developing countries, the politics that surround it and the social, cultural, gender, infrastructure and clinical issues that drive the unfolding tragedy are squarely at the center of the international conference.

From a political perspective, this conference was important in at least two broad areas. The first was the general acknowledgement of a fundamental paradigm shift in the way we view the pandemic. The shift was at the heart of the international policy and treatment access sessions and discussions. The conference provided an opportunity to recognize the change and to gain broader consensus on how to move forward.

The importance of this can't be underestimated. When delegates left Durban two years ago, "the silence had broken" and the international pandemic took on a reality that was new for many of us; a reality shaped by the HIV-positive people we met and with whom we shared experiences and knowledge. But there were still many questions being asked. Among them were "could prevention and treatment and care work on a large scale in developing countries?" and "should treatment be delivered in resource-poor settings?".

The conversation in Barcelona was fundamentally different. The need to deliver treatment and care, the need to scale up prevention programs and integrate prevention and care was clear and the lack of action was seen primarily as a moral and political problem, not one of feasibility. The questions asked in Barcelona were not whether treatment, care and prevention programs should be mounted but: how can we hold leadership accountable and how quickly can we move?

The paradigm shift in the way we think about the epidemic is multi-faceted and includes:

The second important note at Barcelona was the changed emphasis of the conference and the tenor of the international policy debate. The science reported was important, fueled many debates and provided those with access to treatment and care with some new information to consider. But the conference was essentially political and the spotlight was on those without the basic tools to fight the epidemic.

Confrontational protest seemed, for many of us, to have regained an important place in the spectrum of political approaches and a new energy. The policy track reportback may have summed it up best, stating that there was a "clear consensus, across all disciplines and backgrounds, from all parts of the world, a sense of urgency for effective action and a clear frustration between knowledge of what is possible and what is happening now."

It was notable that the challenge to movement and accountability wasn't exclusive to the policy track but had a place in all parts of the conference. Many of those in leadership positions, including Dr. Peter Piot, Executive Director of UNAIDS, Bill Clinton, Nelson Mandela and Graca Machel, former First Lady of South Africa, challenged delegates to action.

Peter Piot opened the conference with the statement that, "We did not come to Barcelona to renegotiate the promises. We must make an uncompromising attack on stigma -- that's not negotiable. We must strengthen the alliance that will deliver HIV vaccine -- that's not negotiable. We must deliver both prevention and treatment at full scale -- that's not negotiable. We must find $10 billion -- that's not negotiable. Defeating the epidemic is possible but it's not inevitable."

Even amongst those known for their expertise in, commitment to and focus on the science of care and treatment, the call for action was clear. Dr. Anthony Fauci, Director of the National Institute of Allergies and Infectious Disease (NIAID) gave a plenary speech focused on HIV pathogenesis, but included a message for access to treatment, "... treatment works, by saving and improving lives, and, therefore, treatment should be made available as soon as possible when clinically indicated to those who need it, in the north and in the south."

Women were very visible in the political discussion at the conference. As the numbers of women and girls infected continue to rise at alarming rates, women and men are struggling to address issues for positive women, including the gender inequities that fuel the epidemic. A woman with HIV opened the conference and an HIV-positive woman closed the conference with an eloquent and compelling speech urging, among many things, a greater role for community at the next conference in Bangkok. Women at high levels of government and in leadership positions spoke about their own actions, the concept of leadership, what was needed for women living with HIV and the importance of gender equality. Calls were made for a gender analysis for funding applications. This would mean that applicants for various types of funding, including Global Fund support, should be required to outline what they would do with and for women living with HIV. Women also developed a Barcelona Bill of Rights that is currently being endorsed and will be distributed in advance of World AIDS Day, December 1, 2002.

Project Inform and other organizations joined with activists from throughout the world to protest the Bush Administration's domestic and international HIV/AIDS policies. Secretary of Health and Human Services, Tommy Thompson's speech regarding the US role in the international epidemic was drowned out by angry protestors. Protestors demanded increased US funding and accountability in the domestic and international fight against the epidemic. Secretary Thompson, to his credit, met with several community members after the protest to discuss substantive policy issues, including prevention efforts, particularly in communities of color, needle exchange, domestic and international funding, the US contribution to the Global Fund and the concept of Medicaid expansion for people living with HIV. Secretary Thompson also committed to continued dialogue with community members and another meeting.

There were political challenges to increase and diversify the voices of people living with HIV. One young woman, an out HIV-positive active drug user, from Australia made an impassioned plea to attendees of one session to help at least one out HIV-positive active drug user attend the next international conference. She hadn't met anyone else who was out about active drug use during her time in Barcelona.

Many delegates were unable to attend the conference due to a Spanish government decision to deny visas to positive people without insurance. This decision affected many from developing countries who may have benefited greatly from the information and the contacts of the conference and who would have educated others through their efforts to fight HIV in their countries. Spanish activists spearheaded a noisy protest of their Minister of Health during her speech at the conference opening to denounce the action.

There were protests against rich countries for their lack of funding and leadership and multinational corporations, including Coca Cola for allowing their employees in developing countries to go without HIV treatment. Since the conference at least three corporations have joined Heineken International in providing treatment for employees. As always, there were protests against pharmaceutical companies. But overall, the challenges, debates and protests seemed to resonate through the conference. The sense of urgency and frustration expressed in the policy track summary was palpable throughout the conference.

From a political perspective, the take home message from Barcelona was at once profoundly significant and very simple.

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