History of Community Involvement in International AIDS Conferences (IACs)
The first few International AIDS Conferences (IACs) in the mid- to late-1980’s were “members only” scientific gatherings and did not reach out to “community” – people living with HIV, community advocates and workers in emerging AIDS service organizations. The purpose was to share research and medical findings about what was then a relatively new disease, and the IAC was organized in conjunction with largely biomedical bodies such as the World Health Organization and the US Centers for Disease Control. Conferences were held annually until 1994 when they became biennial.
At first, community was largely absent although small numbers of community members attended IACs right from the very first one in Atlanta in 1985. In the early days, community was present but largely invisible and silent. Visibility increased and courageous and forceful lobbying and activism took place. Then formal recognition of community in planning and programming occurred followed by the setting down of community as equals with science as a matter of principle. The Geneva Principle, emerging out of the 1998 conference, stated that
Community involvement in the planning of an International AIDS Conference is as important as that of the scientific community and that representatives of both groups should participate on an equal footing towards this goal.
Although no IAC has ever formally proclaimed or adopted the GIPA principle (Greater Involvement of People Living with HIV/AIDS), it has increasingly been integrated into the organizing process. For example, when members are being sought for Programme, Track and other Committees, the inclusion and leadership of people living with HIV has become an important consideration.
The list of IACs, including dates, themes and key issues for each Conference, is available.
Key Events The following IACs marked important events in the history of community involvement in both the Conferences and the AIDS movement as a whole:
Washington 1987 – Activism took place on a range of issues related to access, lack of political commitment and the slow pace of research. A “Living with AIDS” panel discussion was held where people living with HIV shared their experiences. Dr Mark Katz wrote in Being Alive magazine in October 2000, “In the exhibit area there was a huge map of the United States which said on the top: ‘The Problem: AIDS. The Solution: Banish All Homosexuals.’ It had little pushpins on all the major cities of the United States indicating how many homosexuals lived in each”. He used this example to demonstrate the attitudes towards people living with HIV at the time.
Stockholm 1988 – Social issues gained space with a quilt memorial and a series of sessions entitled “The Face of AIDS”. The views of people living with HIV were articulated for the first time and on a large scale within the formal conference programme.
The International AIDS Society (IAS) was formed to decide on future conference venues and to serve as a network for HIV/AIDS professionals.
Montreal 1989 – The first pre-Conference Community Forum was held to further efforts at international community mobilization and networking. The Montreal Conference marked a watershed event in the history of the IACs. At the opening ceremonies, a large group of activists, led by ACT UP and its Canadian counterparts AIDS Action Now! and Réaction-SIDA, stormed the stage to protest the exclusion of persons living with HIV and affected communities. A person living with HIV “officially” opened the Conference on behalf of people living with AIDS globally. Demands were made for greater involvement of people living with and affected by HIV and AIDS in the International AIDS Conferences, and in all decisions and processes affecting their lives. AIDS activists kept up a daily campaign addressing a number of policy issues, sometimes disrupting conference sessions to publicly deliver their messages. Up until then, the conference had been a members-only event for the AIDS establishment, a chance for scientists to meet their peers and share research. People living with HIV were presented mainly in the abstract.
Borne out of the planning for the Montreal IAC, ICASO (International Council for AIDS Service Organizations) was formed in 1991.
San Francisco 1990 – This Conference marked a milestone in political mobilization when both scientists and community members joined in advocacy and action around the USA’s refusal to grant visas to HIV+ people. There was an “uneasy alliance” where science and community agreed to disagree on specific issues whilst recognizing the larger benefit of finding ways to work together. Community members and activists found themselves sitting on session panels with scientists. There were growing levels of activism and advocacy and greater voice for people living with HIV.
Florence 1991 – Building on momentum from the previous Conference, Florence saw further protest on the USA policy on immigration. Community took the lead in demanding that the IAS and co-organizers take a stand against all future conferences in the USA until the travel ban was lifted. As of 2007, the ban is still in effect and no IAC has taken place in the USA since 1990.
Berlin 1993 – ICASO became a co-organizer of the IAC.
Vancouver 1996 – The organizers supported community and activist involvement including a specific community-led section called “Community Aspects”. A two-day Community Forum in advance of the main Conference was also held. UNAIDS (Joint United Nations Programme on AIDS) and GNP+ (Global network of People Living with HIV/AIDS) joined ICASO to become community co-organizers.
Geneva 1998 – Community representatives played an unprecedented role in planning the Geneva Conference. Community Aspects included a diverse and representative department with a separate staff and budget. ICW (International Community of Women Living with HIV/AIDS) became the fourth co-organizer. Conference organizers adopted the “Geneva Principle” which stated that the conference programme will have reflect both scientific and community priorities.
Durban 2000 – Signaling another major milestone, this was the first IAC to be held in a developing country. With the theme of “Break the Silence”, it called attention to the devastating impact of HIV related stigma.
The Durban conference represents a turning point in the global effort to mobilize a response to AIDS. It focused the world’s attention on the magnitude of the tragedy unfolding in Africa, while at the same time drew large delegations from many African countries. It inspired many HIV positive participants to assert their hard-won right to join researchers and policy-makers at the decision-making table. Innovative community activities sought to “complement the scientific aspects” and “integrate and involve the infected and affected community perspectives and voices in all aspects” of the conference (Mellors, in “Planning for Impact: A Guide for Planners of the Community Aspects of the International AIDS Conference” ICASO (2005).
Contrary to long-held arguments, the Durban conference also demonstrated that a conference in the South could rival or better any held in the North.
Durban showcased the shift from a biomedical approach to a more comprehensive one for the IACs. It was simply impossible for conference sessions including those focusing on basic science to escape from the fact that the halls and corridors were full of people directly or indirectly affected by the epidemic. Instead of having to move those affected to the Conference, the IAC had finally come to the global epidemic. In addition to the traditional IAC tracks – basic science, clinical science, epidemiology, prevention & public health, and social science a new track was added dealing with rights, politics, commitment and action. Access to HIV treatment and the principle of equitable treatment-for-all was catapulted into a global political issue and movement.
Barcelona 2002 – “The Barcelona Framework” developed for this Conference marked the start of an integrated programme and attempted to consciously apply the Geneva Principle to the planning of the programme. Youth planned and organized into the Barcelona Youth Force. The organizers introduced a second option for abstract application that was more suited to qualitative research and/or authors with less conference experience. Novel ‘Bridging Sessions’ were also introduced to encourage discussion of issues from different perspectives.
Barcelona also saw several points of broad consensus: the goal of 3,000,000 people in developing countries receiving antiretroviral drugs (ARVs) within 3 years was made concrete; the debate between prevention vs.treatment approaches was over; the major question was about securing the resources and will to scale up models that work; and a heightened recognition that marginalization and stigma continue to define and shape the epidemic.
Bangkok 2004 – There was no pre-conference Community Forum this time but a “community gathering” that focused on networking. Youth organizing strengthened with the Bangkok Youth Force. Community planners introduced a new initiative, the Global Village, to increase access by community to the International AIDS Conference.
The Global Village marked the start of a new space within the Conference, community-run space that was partially integrated with overall Conference proceedings, concurrent with the Conference sessions and open to the public. It was a space rich in diversity and with greater opportunity to learn from one another.
Toronto 2006 – The concept of the Global Village was expanded as an accessible, community-run space, open to both delegates and the public and became physically part of the main Conference site. Connections were made between the Global Village and Conference Programme Sessions. The Global Village contributed to the Conference as a whole, intended to serve as a community-focused space integrating community, science and leadership, reflecting and supporting the overall theme of AIDS 2006, Time to Deliver. In the Global Village, diverse communities affected by HIV and AIDS were able to interact, learn from and network with one another. For the first time, a full time Youth Coordinator was part of the staff component and planning took place in conjunction with the Toronto Youth Force.
In Toronto, a unique structure meant that community involvement in the organizing side of the Conference was stronger than ever. The Local Host was set up as a separate registered non-profit organization with its own community Board of Directors. It attracted a large contingent of volunteers from the HIV community onto organizing committees at the local level and employed staff who had direct hands-on experience in the field of HIV. The strong links with the community were evident in many areas, including the Global Village and Candlelight Vigil, the formal involvement of youth under the age of 18 years, and the level of local and international outreach that occurred prior to the Conference.
Mexico City 2008
With over 20,000 delegates, the Mexico City Conference was the second largest International AIDS Conference and the first to be held in Latin America. The theme was Universal Action Now. Being in the Latin American and Caribbean region allowed a focus on concentrated epidemics among MSM, sex workers, drug users, migrants and indigenous communities; and an emphasis on gender equality and human rights like never before.
The Global Village continued to grow with a record number of sessions, networking zones, cultural and youth activities held outside the conference. Community involvement in the planning of the conference was strong, including for the first time a marathon meeting of programme activity working groups to help select the sessions and activities. Reflecting the importance of art and culture in Latin America and the Caribbean, the Culutral Activities Programme was partcularily visible inside the conference, in the Global Village and throughout the city.
The impact of the conference was felt globally with the introduction of Conference Hubs where selected conference sessions were broadcast live to centres around the world and discussion and feedback from these locations fed back to Mexico. This plus the availability of on-line webcasts, audiocasts and transcripts increased the reach of the conference to community.
Community Involvement in the Future
It is clear that over the years, community involvement in the IACs has increased dramatically. However, there is still a sense that science is the “core” and community the “periphery”. This is reflected in more subtle and indirect ways now that people living with HIV are centrally involved in the organizing. Still the battle to include the voices of those infected and affected by HIV, and their issues, in the planning and programme of the conference has been won but must be continually defended.
Sources:
AIDS 2006 Global Village Monitoring and Evaluation Report; “Planning for Impact: A Guide for Planners of the Community Aspects of the International AIDS Conference” ICASO (2005) HDNet’s International AIDS Conferences 2004: Atlanta to Bangkok Looking Back at Past Conferences Conference Report XV International AIDS Conference, Bangkok, Thailand. July 2004; AIDS 2008 Impact Report (2008).