IXth International Conference on AIDS

Heather Worth
New Zealand AIDS Foundation

The IXth International Conference on AIDS, 1996, in Vancouver was in two parts: the conference itself and, prior to it, a community forum. The forum, attended by 500 people involved in AIDS community work around the world, dealt with the principles on which to base community research and development and HIV prevention. It was not concerned with scientific research. The conference proper dealt with the results of specific research (mostly scientific) and intervention projects.

The Community Forum

The Community Forum was divided into four focus areas: community development, human rights, treatment and social research. The participants shared work they had carried out and developed a series of principles for community workers to take back to their countries and with which they could lobby funding bodies and policy-makers.

I attended the research sessions. I found that many other researchers were operating under conditions which would be considered intolerable by those of us working in the "first world". However, many of the principles developed are as relevant to us as they are to those in India and Southeast Asia. While some of the details of social research in Asia may differ from our own (they tend to be funded by external donors such as WHO, with all the dependency that such funding brings), the desire to do research which was owned and carried out by the communities most at risk was a theme which arose time and time again.

A number of strategies for undertaking effective social research in our various countries were considered and sets of principles and recommendations for action were debated. The recommendations of the social research stream of the community forum are detailed below.

Principles

• HIV is more than a virus. It is a combination of social, political and economic factors.
• There is a dynamic relationship between behaviour and the social environment.
• Research is a learning process where knowledge is created by all the actors involved – researchers, community, financing agencies and government. This knowledge is essential for successful HIV programmes.
• We acknowledge that there are a variety of research perspectives.

We believe that:

• Community organisations should integrate research into their programmes
• Research should be collaborative and participatory. This collaboration between researchers and communities affected must be found in the design, implementation, evaluation and dissemination of knowledge.
• Networks must be built between community organisations conducting research.

Recommendations:

• Researchers, policy-makers and funding agencies should be flexible with regard to the purpose and methodology of research.
• Communities must be actively involved in all aspects of research: design, implementation, evaluation, interpretation and dissemination of results.
• Funders should allow for training and development within their HIV strategies in order to empower communities to build their research capacities towards sustainability and independence.
• Communities should validate their work through reporting, dissemination, exchange in coalitions and networks and documentation of their experience.
• The results of social research should be relevant for communities in order that they be used for policy, programme and advocacy purposes.
• However, it should be recognised that these are long-term processes that require stable, ongoing support and commitment.

The contact with other AIDS social researchers from our region and from other parts of the world has meant global links have been formed with other like-minded researchers. They have a great deal to offer us and we in turn can offer them support and expertise. We are at the early stages of a coherent community-based AIDS social research programme in New Zealand. The community forum was crucial in helping us formulate and confirm organisational structures and ways of working within the communities affected by the virus in this country. In this sense the community forum was invaluable.

The Conference

The size of the conference (15,000 delegates) was overwhelming, and only by virtue of having a number of New Zealand delegates present were we able to cover its breadth. I attended Track D) with emphases on social research, policy-making, and AIDS and global politics. As the HIV epidemic in New Zealand most affects men who have sex with men I generally attended sessions about these groups.

One of the most important things to come out of the conference was the debate around whether youth were an at-risk category. While the Americans had assumed youth to be a homogeneous group of risk takers, Australian research has shown that young men have more safe sex than older men. In the SMASH survey of 1699 men who have sex with men, age was not a factor in unsafe sex. The factors associated with the 159 men who engaged in unprotected intercourse included unemployment, engagement in a wider range of anal sexual practices, and unfavourable attitudes to condoms.

The Australians have also undertaken a social impact assessment of the gay community in two Australian cities (Sydney and Adelaide) "post" AIDS. There were significant differences between Sydney and Adelaide in terms of sexual cultures, sexual patterns, sexual activities and sexual possibilities. These differences highlight a need for specific representation of gay cultural overlays in prevention work, and throw doubt on the usefulness of viewing the epidemic as a national entity in public health planning.

There was a roundtable discussion on AIDS politics and inequality. Speakers from around the world spoke about the structural inequalities which are present around AIDS. Global structures, such as levels of indebtedness of third world countries and the structural adjustments that are forced upon them, hinder prevention efforts in these countries. Much of AIDS research does not take into account structural inequalities such as class, ethnicity and gender. Paul Farmer called this the triumph of behaviourism over "social" research.

In a session entitled "Policy Formation and Evaluation", Richard Parker described the interconnection between community activism, AIDS control programmes in Brazil and the World Bank. He argued that the analysis of the history of AIDS policy in Brazil needed to be situated in the context of the gradual redemocratisation of Brazilian society after 290 years of military dictatorship, the serious economic crisis engendered by international debt and structural adjustment programmes in the 1980s and 1990s, and the evolving responses to AIDS on the part of development cooperation agencies such as the World Bank. In particular, he pointed to the relative effectiveness over time of the policy initiatives motivated by political pressure on the part of affected communities.

John Ballard discussed the Australian experience of the preconditions for effective policy which included community activism and the techniques of governance, such as epidemiology. These factors allowed quick response to the epidemic and forced the Australian government to listen to gay community leaders and activists.

The lessons that I learned from the conference were:

• Models of research must allow for social, cultural and structural factors to be taken into account.
• We need to do local research and to make local statements about who is at risk on the basis of that research.
• There is a necessity for community-based research.

The conference made me realise that the model of research that we have begun to undertake with the New Zealand AIDS Foundation (by intuition to a certain extent) is the right one, for it combines community involvement with the rigour of high academic standards.