Breaking the silence. (Conference Room Paper).

I began compiling and editing materials on women and HIV/AIDS in early 2001 for a special issue of CAFRA News, the biannual magazine of the Caribbean Association for Feminist Research and Action (CAFRA), where I worked as Information Officer. I wanted it to be an explicative anthology of the epidemic in the region (which is second in magnitude to that of sub-Saharan Africa) and its particular impact on women and girls. So I was very excited to be asked to represent CAFRA at the civil society sessions parallel to the second informal consultation preparatory to the United Nations General Assembly special session held in May 2001.

CAFRA was one of about twenty international groups supported by the Joint United Nations Programme on HIV/AIDS (UNAIDS) to attend the meetings, which aimed to: analyze and comment on the revised draft Declaration of Commitment; prepare briefs for a dialogue session with Member States; influence government delegations on content and process; and review the next steps towards the special session. I started following the "Break-the-Silence" e-mail discussion, and read any key documents I could find. It was my first experience of a United Nations world conference and, although I had some knowledge of other conferences (the 1995 Fourth World Conference on Women, in Beijing, for example), nothing I read really prepared me for the experience to follow.

International civil society participants attended three briefings over a twelve-hour period. The group expanded with each briefing, so that by the first day of the consultation many of us had heard the same information four times. We also arrived to the disappointing news that the dialogue session with Member States had been put forward at the last minute. Not only did we have little time to prepare, but the timing was inopportune, as many delegates were expected to be attending receptions or meetings then. With a bigger group on, we identified issues that we wanted to highlight in the Declaration of Commitment and classified them for further discussion in small groups as follows:

* Strengthening the global focus of the Declaration;

* Framing the overall response to HIV/AIDS within a human rights-based approach;

* Retaining language naming vulnerable groups;

* Strengthening the language on gender;

* Targets, resources and follow-up; and

* Full meaningful participation of civil society and of people living with HIV/AIDS.

It was quite challenging trying to refine the ideas and priorities of many different interest groups from around the world and condense them into three to four key points to provoke dialogue, but we managed. And just one hour before the dialogue session, we elected five speakers to present our case:

Our representatives were O. C. Lin, Hong Kong AIDS Foundation; Edgar Carrasco, Latin America and Caribbean Council of AIDS Services Organizations; Dr. Jacqueline Bataringaya; Julien Hussey, Global Business Council; and Yolanda Simon, Caribbean Regional Network of People Living with HIV/AIDS. Although warned beforehand, we were disheartened by the poor turnout. The audience comprised mainly non-governmental organization (NGO) delegates, civil society participants and about twenty Member States, most of whom were known to be sympathetic to civil society participation in such a process. The promise of an additional dialogue session on Wednesday afternoon was little consolation because, again, the timing was bad: lunchtime!

The next two days were guided by the realization that the most effective way to influence proceedings was to get sympathetic Member States to integrate our concerns in their arguments during negotiations by preparing specific suggestions for amendments to the Declaration. I was petrified to be elected to speak at the second dialogue session, but mustered up enough composure to prepare a speech on "Key Elements in the Declaration", with the help of three other colleagues: Michaela Figueira, AIDS Law Unit, Namibia; Elizabeth Franklin, United States National Council of Churches; and javier Bellocq, Latin American Network of People Living with HIV/AIDS, Argentina. Well-prepared, compelling presentations from our side were received by the "usual suspects": a handful of mostly sympathetic government delegations. As an anonymous participant commented on Break-the-Silence, "it was sad to see that the energy and time that many people had put into the presentations and other preparations fell on so few ears".

At the special session en route to an international advocates meeting hosted by the Global Campaign for Prevention Options for Women, [decided to focus on the NGO briefings and parallel side events inside the UN Secretariat building, only venturing to the General Assembly public gallery one evening to observe the final plenary. Most of the panel discussions were interesting, well-attended and supported by excellent documents. The most interesting panels were on "Gender and HIV/AIDS", "Development of an AIDS Vaccine" and "Microbicides", and the joint Global Network of People Living with HIV/AIDS/Red Cross panel on "Building Partnerships at Country Level". The panel on "Dual Protection and the Female Condom" was so popular that I literally could not get in the door!

A preliminary analysis of statements presented by 16 Caribbean Governments at the special session reveals some striking commonalties and differences. Access to affordable medicines for treatment is the most pressing concern, with the need to address trade-related issues affecting the provision of essential medicines being noted by some, as was the need for additional financial resources to confront the epidemic. Accessibility of the global HIV/AIDS and health funds was a concern for many. Not surprisingly, the face of HIV/AIDS in seven countries is now young and female.

There were several noteworthy national initiatives. Cuba provides comprehensive care, free anti-retroviral treatment and support to all infected persons. The Bahamas and the Dominican Republic provide or plan to provide triple therapy for all HIV-positive pregnant women and, in the case of the Dominican Republic, indefinite treatment for mothers after delivery. The Bahamas currently provides training assistance in HIV/AIDS to other countries in the region, while Cuba has offered medical personnel, equipment, diagnostic kits and anti-retroviral treatment to the poorest countries with highest incidence of the disease. Both Haiti and Trinidad and Tobago are participating in HIV-vaccine trials. I hung my head in shame, however, when I learnt that the Dominican Republic was the only Caribbean country voting to reinstate to the human rights round table the civil society delegate from the International Gay and Lesbian Human Rights Commission.

Since my return home, I have gone through the Declaration and noted the significant changes to the text and the strengthening of language in many areas of concern to civil society. Among these are:

* references throughout the text to other seriously affected regions in the world (the Caribbean, for example) and to regional/subregional initiatives on HIV/AIDS:

* recognition that prevention, care, support and treatment are inextricably linked;

* recognition that women and girls are disproportionately affected by HIV/AIDS and that gender equality and women's empowerment are essential for reducing vulnerability; and

* emphasis on access to highest attainable standards of treatment and the need to cooperate constructively in strengthening pharmaceutical policies and practices.

Even though controversial groups were not named, "vulnerable groups" are linked to "people living with HIV/AIDS" throughout the document and defined in paragraph 64 as: "... identifiable groups which currently have high or increasing rates of HIV infection or which public health information indicates are at greatest risk of and most vulnerable to new infection as indicated by such factors as the local history of the epidemic, poverty, sexual practices, drug-using behaviour, livelihood, institutional location, disrupted social structures and population movements, forced or otherwise."

Nevertheless, it does strike me as absurd that twenty years after the first cases of 'unusual immune system failures" were identified among gay men in the United States, the Declaration of Commitment on HIV/AIDS ignores their existence.

RELATED ARTICLE: Access to Quality HIV Care

UN Agencies Combine Forces

The World Health Organization (WHO) has published the first list of HIV-related medicines that were found to meet its recommended standards, part of a joint effort by United Nations programmes to assess the quality of HIV drugs to help make treatment services more accessible to poor countries. Forty products from eight branded and generic manufacturers are included in the initial phase of the project, which is managed by WHO and supported by the UN Children's Fund, the Joint UN Programme on HIV/AIDS (UNAIDS), the UN Population Fund and the World Bank. The list includes eleven antiretrovirals, which allow for several triple therapy combinations, and five products for opportunistic infections.

The Access to Quality HIV/AIDS Drugs and Diagnostics project is part of a UN-wide strategy to improve access to HIV treatment and is meant to promote rational use of drugs, affordable prices for medicines and diagnostics, sustainable financing, and reliable health and supply systems, the UN agencies said in a joint statement. Pharmaceutical products are evaluated according to WHO-recommended standards of quality and for compliance with good manufacturing practices. Other drugs and suppliers will be added to the list as they meet the set standards. Eight companies have been evaluated so far, but another 13, as well as 100 products, are currently under review. The list is available on the Web sites of WHO and other collaborating agencies.

According to the agencies, HIV/AIDS has become the leading cause of mortality in Africa. Of the 40 million people worldwide living with AIDS, 28 million are in Africa, while the disease is rapidly spreading in Asia and the Pacific. An estimated 7.1 million in the region are now living with HIV/AIDS.

Cathy Shepherd is an Information Specialist and long-time activist in the women's movement in Trinidad and Tobago. At the time of writing this article, she was information Officer with the Secretariat of CAFRA.