International Council of AIDS Service Organizations (ICASO)

2000 Annual Report

ICASO is an interactive focal point working on international HIV/AIDS issues, strengthening the community-based response by connecting and representing NGOs around the world.

ICASO Contact Information

Central Secretariat 399 Church Street, 4th Floor Toronto, Ontario, CANADA M5B 2J6 Contact: Richard Burzynski Tel: (1-416) 340-2437 Fax: (1-416) 340-8224 E-Mail: icaso@icaso.org www.icaso.org EuroCASO - Europe Groupe sida Geneve, 17 rue Pierre-Fatio CH-1204 Geneva, SWITZERLAND Contact: Florian Hbner Tel: (41-22) 700-1500 Fax: (41-22) 700-1547 E-mail: eurocaso@hivnet.ch www.hivnet.ch/eurocaso AfriCASO - Africa ENDA Tiers Monde 54, rue carnot, B.P. 3770 Dakar SENEGAL Contact: Mamadou Seck Tel: (221) 823 1935 Fax: (221) 823 6615 E-mail: africaso@enda.sn NACASO - North America Canadian AIDS Society 309 Cooper Street, 4th Floor Ottawa, Ontario, CANADA K2P 0G5 Contact: Gerard Yetman Tel: (1-613) 230-3580 Fax: (1-613) 563-4998 E-Mail: gerardy@cdnaids.ca APCASO Asia/Pacific Malaysian AIDS Council 12 Jalan 13/48A The Boulevard Shop Office 51000 Kuala Lumpur MALAYSIA Contact: M. Puravalen/Susan Chong Tel: (603) 4045-1033 Fax: (603) 4043-9178 E-mail: apcaso@pd.jaring.my LACCASO Latin America and the Caribbean Accin Ciudadana contra el SIDA - ACCSI Av. Rmulo Gallegos, Edif. Maracay, Apto. 21, El Marqus CARACAS 1071 - VENEZUELA. Contact: Edgar Carrasco Tel: (58-212) 232 7938 Tel/Fax: (58-212) 235 9215 Email: laccaso@internet.ve

ICASO works to strengthen the community-based response to HIV/AIDS, by connecting and representing non-governmental organizations in all the regions of the world. Our mission is to: mobilize communities and their organizations to participate in the response to HIV/AIDS; articulate and advocate the needs and concerns of communities and their organizations; ensure that community-based organizations, particularly those with fewer resources and within affected communities, are strengthened in their work to prevent HIV infection, and to provide treatment, care and support for people living with and affected by HIV/AIDS; promote the greater involvement of people living with, and affected by HIV/AIDS in all aspects of prevention, treatment, care and support, and research; promote human rights in the development and implementation of policies and programs responding to all aspects of HIV/AIDS.

ICASO gratefully acknowledges the support of the following: AIDS 2000 AIDS Committee of Toronto Canadian International Development Agency (CIDA) David Patterson (Human rights advisor) Dupont Pharma GlaxoSmithKline Positive Action Health Canada International AIDS Vaccine Initiative InterScience Europe Japanese Foundation for AIDS Prevention (JFAP) Joint United Nations Programme on HIV/AIDS (UNAIDS). Merck Pharmaceuticals

ICASO: Taking Stock and Planning for the Future The year 2000 culminated in a strategic planning retreat held in Kuala Lumpur in midDecember. After 10 years of promoting and supporting the work of community-based organizations around the world in the prevention of AIDS, and the care and treatment for people living with HIV and AIDS, the Kuala Lumpur retreat was the first time that ICASO discussed and agreed to a set of documents articulating the organizations Mission, Vision, and Guiding Principles. The retreat was the result of a comprehensive review of the organization, entitled The Global Assessment, conducted in 1999-2000. The Global Assessment found that like many organizations ICASO, in order to remain relevant and effective in a changing institutional environment, must respond to a series of strategic, organizational and operational challenges. It was revealed that the most important of these challenges is the need to review the mission, structure and core functions of ICASO and to devote more time and resources to an ongoing process of organizational development and program planning. During the five days of the retreat, the group discussed ICASOs identity, its purpose, and its constituency. Participants discussed the environment in which ICASO operates and the unique niche ICASO fills. Ideas were raised about ICASOs future and transition plans that will get ICASO to where it wants to be. The governance of ICASO was revisited, and accountability and transparency issues were discussed. The organizational structure was examined, and the group attempted to clarify the relationships among the central and regional secretariats. In short, no stone was left unturned.

All the participants agreed that the time is ripe for ICASO to embark on this exercise, and that it will require a great deal of institutional soul searching, candid conversations among the secretariats, and a commitment to a thorough but efficient process. The Board of Directors will convene a special meeting in Geneva, Switzerland, March 26-28, 2001, to ratify the required by-law changes and transition plan for an expanded Board.
Participants at the retreat

A new set of strategies, programs and activities to guide ICASO and the Regional Secretariats was devised at the retreat. Although some new directions were identified, the fundamentals remain in tact. The following strategic directions will guide ICASOs workplan from 2001 2003: 1

Undertake on-going and event-specific advocacy activities that: ! Articulate the needs and concern of communities and their organizations; ! Influence the international community and political leaders; ! Lobby for appropriate government responses; and ! Target governments through the United Nations Economic and Social Council (ECOSOC). Promote human rights based on the International Guidelines on Human Rights and HIV/AIDS. Promote the principles of the GIPA (Greater Involvement of People Living with HIV and AIDS) declaration. Mobilize communities and their organizations. Ensure meaningful community participation at international and regional conference. events continued organizational involvement and advocacy with organizers. Implement the ICASO Global Initiative. Strengthen community based organizations through community-based activities. Implement network building at national level.

As these re-vitalized strategic directions take shape, the ICASO community remains committed to the reason that the organization was born 10 years ago: to serve those living with and affected by HIV/AIDS. More details of the Global Assessment and the outcomes from the retreat are available at www.icaso.org.

ICASOS VISION: People living with, and affected by HIV/AIDS are free from stigma and discrimination, and have access to the highest quality education, treatment, care and support. All vulnerable people and communities living with or affected by HIV/AIDS have full access to the knowledge, means and support to prevent further HIV infections. All relevant policies and programs are strategically designed with a focus on human rights. People living with, and affected by HIV/AIDS are fully involved in all aspects of prevention, treatment, care and support, and research. Communities and their organizations are mobilized and resourced to fully participate in the response to HIV/AIDS. The needs and concerns of communities and their organizations are clearly and strongly articulated

ICASO ACTIVITIES IN 2000

THE XIII INTERNATIONAL AIDS CONFERENCE The conference was co-organized by the International AIDS Society (IAS), UNAIDS, the Global Network of People Living with HIV/AIDS (GNP+), the International Community of Women Living with HIV/AIDS (ICW), and ICASO. Together with the local organizing team comprised of scientists, clinicians, community activists, including PWAs, we collectively cultivated an atmosphere to develop a program ensuring the maximum interchange within and among the various stakeholders who attended the conference. The conference was held in Durban, Africas largest port. It is a city of about 3 million people in the province of KwaZulu Natal, where about 25% of the adult population is living with HIV. It is a modern city with a modern infrastructure yet only 30 kilometers away from the township where Gugu Dlamini was stoned to death by her neighbors for being HIV-positive.

Silence. It was both a first and a turning point - in many ways. The world AIDS conference has evolved over the years from a medical discussion to an inclusive - or as some say - a holistic discussion. Without going into history and details on the conference planning process, suffice it to say that community representatives, in partnership with South African colleagues, made it a priority to ensure broad discussions of key issues. 12,500 participants attended including 4,500 Africans. This was a recipe to guarantee that their issues would not be overlooked this time. Building on the Geneva Principle - a partnership between science and the community on the planning process AIDS2000 became an important milestone for all activists. Some of the examples of the innovations introduced to the conference to ensure maximum learning opportunities and methodologies included: The AIDS Development Project - a preand post-conference outreach program to South Africans, was initiated by the community department of the conference. With separate funding, town hall meetings, skills building workshops and national meetings were held. Surplus funds from the conference may be placed into the project to ensure a longer-lasting program. The Indaba or Community Forum: a 2day meeting of community representatives and people living with HIV to share their understanding of

Durban City Hall

For these, and many other reasons, AIDS2000 adopted the theme Break the

issues in accessing treatment, gender and diversity, and human development and security. Over 2,000 people attended. Funding was included within the overall conference budget. The community program during the conference included; the Amasaiko or cultural program of videos and arts; 68 Ahung Fundani or skills building sessions; Vukani or debate sessions; Mamelang or symposia. Along with satellites, AIDS activists front-line workers and people living with HIV/AIDS - were able to discuss issues such as: southern NGO needs for resources, treatment issues in developing countries, compulsory licensing and parallel importing, the role of community organizations in the development and deployment of AIDS vaccines, what do we mean by affordable and accessible? how can we lobby our governments more strategically?

Canadian doctor and lawyer who has been living in India and recently relocated to London, stated in her remarks at the end of the conference: The issue of development was addressed more concretely at this conference. The silence has been broken at many levels. ICASO also invested its human and financial resources as never before. ICASO participated in the ADP and brought the Community Wall to Durban. Placed there for 4 weeks at City Hall, we hired a local staff member who organized small groups from the surrounding town ships to come to view free videos followed by a discussion.

Community Wall at Durban City Hall

The entire community program was integrated into the scientific program and its associated costs included within the conference budget from the start. Fifteen hundred scholarships were awarded, as well as another 500 for South Africans. The conference format also included the addition of a fifth scientific track, Rights, Politics, Commitment and Action. Many issues included here were previously lumped in with social sciences. It now had been given more priority, and the interface between the various disciplines - scientists, the community, affected populations, ethicists and health-care providers - was a success. As Mandeep Daliwall, a 4

ICASO, and the regional Secretariats were responsible for numerous skills building sessions, community symposia, and satellite sessions. Among them were: vaccine basics twinning for the 21st century building and sustaining networks human rights advocacy human rights lessons learnt in 5 Latin American countries vaccines and the work of communities in Africa accessing treatment in developing countries a community discussion on vaccines

care and treatment for communities strategies for improving access.

We distributed over 15,000 documents on a range of topics in multiple languages. Our newest publication, an AIDS Vaccine Primer, is the first of its kind on the topic of AIDS vaccines and issues for communities. It was made available simultaneously in English, French, Spanish and Portuguese. ICASO also implemented a communications strategy, which included a media pack for NGOs on key issues affecting the community. Over the preceding 6 months, for the very first time, the ICASO network came to consensus on 6 key issues: Access to Better Treatment Burden of Care Prevention Resource Allocation Stigma and Discrimination Vaccines These too were handed out to NGOs to assist them with their media efforts. ICASO held a press conference with UNAIDS to highlight the important role of the community and the key issues that need to be addressed. Throughout the conference, we continued to stress this fact and found opportunities to present community perspectives in the conference deliberations on these issues.

RESEARCH IN HUMAN RIGHTS ISSUES ICASO has been funded by the Japanese Foundation for AIDS Prevention to conduct research in human rights and HIV/AIDS. The phase I of the project has been finalized and the report is available at www.icaso.org. In phase two, ICASO will conduct research regarding how the UNAIDS guidelines have been used by governments and other stakeholders. The research will also look at what governments have done to respond to the recommendations in the guidelines. Specifically, ICASO will research the implementation of Guideline 6 - 'safe and effective medication at an affordable price.' The research will be conducted by Mary Ann Torres with assistance from a regional advisory committee. ICASO is collaborating with Keio University (Tokyo) and the Japanese NFP, Place Tokyo to implement this research. LIAISON WITH UN OFFICE OF THE HIGH COMMISSIONER FOR HUMAN RIGHTS In October, David Patterson (ICASO Human Rights Adviser, based in Geneva) met with Stefanie Grant, Chief, Research and Right to Development Branch, UN Office of the High Commissioner for Human Rights (OHCHR) in Geneva. ICASO agreed to collaborate with OHCHR in preparation for the next general meeting of the Commission on Human Rights in March, 2001, at which AIDS will be discussed. In other developments, in October the OHCHR focal point, Cecelia Thompson resigned - a replacement has yet to be identified.

ICASO/UNAIDS Press Conference

Also in October, ICASO submitted a report to OHCHR on its activities to promote and implement the International Guidelines on HIV/AIDS and Human Rights. A copy of this report is found on the ICASO web site. VACCINE PREPAREDNESS ICASO has entered entering into a oneyear initiative with the International AIDS Vaccine Initiative (IAVI) to increase information, dialogue, and support among NGOs about HIV vaccine research and development. An ICASO vaccine policy coordinator was recruited, and a working group comprised of NGOs and advocates was formed to guide the development of the project. This group represents the beginning of an international vaccine network that ICASO will facilitate in order to provide support and information to communities, especially in resourcepoor countries, regarding AIDS vaccine testing and development. A needs assessment is currently being conducted with the working group and other NGOs in order to determine how a vaccine network could best function to support communities, especially those with few resources. The assessment is targeting countries where trials are currently underway or planned. LAUNCHING THE VACCINE PRIMER ICASOs new publication: Developing Vaccines to Prevent HIV and AIDS: An Introduction for Community Groups is available via the internet in English, French, Spanish and Portuguese our web page (www.icaso.org/vaccine.html). Copies are also available by contacting the Central Secretariat. 6

Copies of the vaccine primer can be downloaded at ICASO website www.icaso.org

A NEW GW-POSITIVE ACTION INITIATIVE FOR GIPA In June 2000, GlaxoWellcomes Positive Action Program initiated a partnership with the Centre for African Family Studies (CAFS) to develop and implement a new project to strengthen the organizational development for community groups of people living with HIV/AIDS in Africa. This responds directly to the GIPA initiative from the Paris Summit on AIDS. GW also selected ICASO to advise and assist CAFS with the project, which runs from September 1, 2000, to August 31, 2001. The aim of this new initiative is to increase involvement of PLWHAs at the national and international level by strengthening the capacity of PLWHA networks throughout the region. CAFS has set up an Advisory Group to advise on modalities and strategies for partnerships, which is a vital step towards operationalizing the initiative. The group is composed of PLWHAs and community groups connected to ICW, the Network of African People Living with HIV/AIDS (NAP+), AfriCASO, UNAIDS and ICASO, and brings in experience from other initiatives and programs that support PLWHA groups and networks. CAFS is an African institution dedicated to strengthening the capabilities of sub-

Saharan African organizations. It is fully autonomous international NGO operating with offices in Kenya and Togo, offering regional training programs in English and French and technical assistance on a variety of issues. A first meeting of the Advisory Group was held in Nairobi October 2527 to review the concerns affecting PLWHAs in Africa, the challenges they

face, and the technical skill areas that need to be strengthened. The meeting also reached consensus on various skills strengthened, and the criteria for the selection of participating countries. CAFS will now finalize the workplan and begin implementing the project by the end of the year.

ICASOs GUIDING PRINCIPLES:

We are committed to: the central role of people, communities and their organizations in developing and implementing national and international policies and programs. the right of each community-based organization to determine its own priorities, methods of organization, and programs, and to have those choices respected by governments and international agencies. ensuring the protection and fulfillment of the human rights of all people living with, affected by and vulnerable to HIV/AIDS. the GIPA principle, which advocates greater involvement of people living with, and affected by HIV/AIDS in all aspects of prevention, care and support and research. ensuring that the needs of women living with, affected by and vulnerable to HIV/AIDS are addressed, and that they are guaranteed an equal voice in policy and program development and implementation. ensuring that the needs of young people and children living with, affected by and vulnerable to HIV/AIDS are addressed, and that they are guaranteed an equal voice in policy and program formulation and implementation. non-discrimination and non-stigmatization on the grounds of HIV status, gender, religion, race, sexual orientation, age, cultural or social class, citizenship status, drug use, or employment in the sex industry. removing fear, coercion and deception from all HIV/AIDS policies, programs and services. ensuring that relevant international programs are coordinated, and involve partnerships among those living with, and affected by HIV/AIDS, communities and their organizations.