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COMMUNITY SYMPOSIA
Closing Comments 29 June - 3 July, 1998

PART 1: CONFERENCE CLOSING CEREMONY, 3 July 1998
as presented by Winstone Zulu (Zambia)

The conference has been complex. There has been joy, and conflict, and rage, and growth. If we summarise it in bullet points, we lose the life of the people, the differences of the culture and spirit of the conference.
So instead we tell stories; we gather impressions…to define an experience.

Objective Science and Subjective Experience
I was at a session with a panel full of community members; and I imagined that somewhere else there was a panel full of scientists…it would have been so nice if the scientists could have been there with us to help exchange ideas and answer questions. To me this reflected Bridging the Gap. It would be helpful to create more situations in the conference, which are not only presentations of papers but also venues for dialog between people living with HIV and AIDS and the scientific community.

We noted some frustration. Some of the forums consisted of people talking about the situations in which they found themselves, not moving ahead. It is impossible to build strategies in a week, but it is possible to identify the challenges. One of our biggest achievements is that people are willing to talk about gaps, working towards meeting the challenges.

Research Methodology and Respect for the Dignity of Research Participants
Many participants in the community symposia expressed their concern about some of the research presented. Some appeared to be done for the sake of research, or followed questionable methodology. In some cases the participants in research, the people, had not been provided with an understanding of the research (and in some cases, did not know they were being researched). Many felt that they had not been given advice about risk reduction techniques or informed of the research outcomes.

Decision-making that Reflects Diversity
Several resolutions came out of community meetings and symposia, including the importance of developing and strengthening networks, that decision-making bodies should reflect cultural, religious, economic and sexual diversity,

The Information Gap
The necessity of gathering, accessing, and disseminating information.

North and South Solidarity Leading to Treatment Access
The issue of provision of information, which is as important in the south as it is in the north and reflects a respect for autonomy in treatment choices.

However, access to treatment and treatment information must be fought for by people in the south and people in the north in solidarity. And it is not just a matter of access to treatments but also access to information and access to occasions for exchange. Connection between people. Connection between policy and action. This sort of dialog exists uniquely in the community aspects of the conference.

Collaboration
There is also a need for traditional medical practitioners to collaborate with biomedical personnel. Over 75% of people with HIV and AIDS worldwide use complimentary and/or natural therapies, traditional, alternative and complimentary medicine.

A recommendation was made that these gatherings be used to bridge the gap between discussions on community-based research, theory, methods, practice and ethics in both the science tracks and also the Community Rendez-Vous process. Bridging the Gap begins here.

People who are so very different are working together to create change. In the storytelling symposium, PWA were telling their stories…and it made one man from Germany think about how gay men, women, and injecting drug users, people whose cultures are worlds apart, have worked together for a common objective as people with AIDS. We must go beyond the gap of cultural differences and work together in a global perspective and in global solidarity to achieve common goals.

Are women included in clinical trials? Hardly. In some countries women with HIV do not have the right to choose pregnancy; they are forced to get abortions. As a gay man with HIV, pregnancy is not supposed to be the German man's issue…but he makes it his issue. We may be different but we have to fight together for our rights because, as this man says, the next one might be me.

From Disorganisation to Results
At some points in the conference, some meetings seemed extraordinarily disorganised. But the spirit was marvellous and the process of change has been assisted.

Some networking meetings resulted in specific recommendations. People communicated and took action. Task forces were formed This is what makes community so unique.

We Take Action

We take action.

The Latin America and Caribbean networking session agreed to organise a community forum in the next Pan-American AIDS Conference. We take action.

The International Community of Women with HIV and AIDS networking group resolved that they need to keep contacts with the Global Network of People with AIDS board, and work together to ensure that by January 1999, there exists good collaboration at grassroots level between local groupings of those two networks. We take action.
Of course, networking also happens in the science community. But a conference setting is an unusual experience for some conference participants…and enormous things come of it, like an interest in forming alliances with other groups and a desire to strengthen networking capacities.

The community is working very hard to bridge its gaps. Possibly because the conference theme is Bridging the Gap, it has become clear that the gap is very wide. Like MaryJane said yesterday it is more like a brick that people on either side are trying to drill through in order to find each other. This is difficult, painful, and yet positive.
Perhaps the conference has not been perfect for some members of the community. But this is the first time that the institution of the conference has begun to change. Change, especially institutional change, is sometimes agonisingly slow…and changing a culture is painful, even when it is good change.

From the Vancouver conference we learned to include more Skills Building workshops, more overlap in session topics, more explanation of basic science and the importance of making more opportunities for community members to participate and to speak. This conference has gone even further to try and integrate the community into what has historically been a scientific conference. In the last seven days, we have had 5 regional meetings, 6 networking meetings, 14 community symposiums, 46 skills building sessions, 4 cultural events, 8 orientation sessions, and even more happening spontaneously.

Regional Meetings
The regional meetings identified five common concerns:

• Problems related to access to appropriate treatment in almost all countries of the world.
  Need to improve advocacy skills and practice relating to the human rights of people living with HIV/AIDS and communities affected by HIV/AIDS.

• Lack of funding for HIV/AIDS community-based initiatives, as the epidemic gains strength each day and resources to fight it become scarcer.

• Members of target communities must be involved in the design and delivery of programmes directed to them.

• Need for expanded, cost-effective and reliable means of communication and capacity building sustain improved communication.

• We want to highlight the following aspects of the various community resolutions and present them as recommendations to the co organisers of the conference:

Human Rights Documentation Monitoring

1 - UNAIDS work with the office of the High Commissioner for Human Rights to establish and promote mechanisms for the documentation of HIV-related human rights abuses or omissions and best practices at the national and international levels. This includes a special rapporteur on HIV/AIDS and human rights and a task force to monitor the application of the UNAIDS guidelines on HIV and human rights.

Durban 2000 - How to Bridge the Gap

2 - The International AIDS Society (IAS), in conjunction with all conference co-organisers, ensure that at Durban 2000, symposia, round table discussions and rapporteur summaries in conference plenaries be used to bridge the gap between discussions on community-based research, theory, methods, practice and ethics in the Community Rendez-Vous and in the general conference proceedings.

Autonomy - Equity - Solidarity
We repeat that we feel strongly that the provision of information is as important in the south as it is in the north, and reflects a respect for autonomy in treatment choices. Access to treatment and treatment information must be fought for in the south, and the north must show solidarity with the south on this issue. It is not just a matter of access to treatments but also access to information; access to occasions for exchange.

Like MaryJane said yesterday, there are many interesting people here from rich and different perspectives. Look at their faces; hear their stories; listen to the cadence of their voices. It is community. And real personal learning comes at this conference for many people from listening and doing. We are doing many good things…and we have many things to learn. Indeed, the best part of these conferences is the hallway conversations. Well, aeroplane hangar conversations. The experience of our rapporteur team is one of those, one very big rich hallway conversation. We were laughing about the possibility that maybe the conference in Durban in 2000 should just be held in one big hallway.

When you get home, take with you the images, the rage, the prevention strategies, the treatment messages, the souvenirs, the hopes, the despair, the sense of solidarity that you feel. All these things are essential; they are some of the bricks that may form the bridge.

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