July 2003 FEATURED VOICES Women’s Groups Fundación para Estudio e Investigación de la Mujer (Argentina) National Community of Women Living with HIV/AIDS (Uganda) Women’s Treatment Action Group (Uganda) Society for Women and AIDS in Kenya Sampada Grameen Mahila Sanstha (India) Networks of People Living with HIV/AIDS AIDS Coalition to Unleash Power in (USA) Network of African People Living with HIV/AIDS (Kenya) National Guidance and Empowerment Network of People HIV/AIDS Advocacy Stories Living with HIV/AIDS (Uganda) Thai Network of People Living with HIV/AIDS Faith-based Organizations Islamic Medical Association of Uganda The Balm In Gilead (USA) Wat Norea Peaceful Children (Cambodia) Access to Treatment in South Africa Treatment Action Campaign Health Systems Trust Church of the Province of Southern Africa National Health Committee of the African National Congress We would like to sincerely thank the following groups, featured in this collection of stories, for providing photographs of their organizations’ activities for use in this publication: AIDS Coalition to Unleash Power, Islamic Medical Association of Uganda, Fundación para Estudio e Investigación de la Mujer, National Guidance and Empowerment Network of People Living with HIV/AIDS, Sampada Grameen Mahila Sanstha, Thai Network of People Living with HIV/AIDS, Treatment Action Campaign, Wat Norea Peaceful Children, and Women’s Treatment Action Group. POLICY is funded by the U.S. Agency for International Development (USAID) under Contract No. HRN- C-00-00-00006-00, beginning July 7, 2000. The project is implemented by the Futures Group International in collaboration with the Centre for Development and Population Activities (CEDPA) and Research Triangle Institute (RTI). ISBN 0-9605196-3-7 MMoommeennttss iinn TTiimmee:: HHIIVV//AAIIDDSS AAddvvooccaaccyy SSttoorriieess POLICY Project July 2003 Contents Acknowledgments iv Abbreviations v Section 1: Introduction 1 Section 2: Charting a Course: Cornerstones and Common Advocacy Steps 9 2.1 Cornerstones of HIV/AIDS Advocacy 13 2.2 HIV/AIDS Advocacy Timeline 18 2.3 Common Steps in the Advocacy Process 21 Section 3: Women's Groups: Leaders by Example 28 3.1 Fundación para Estudio e Investigación de la Mujer 33 3.2 National Community of Women Living with HIV/AIDS 37 3.3 Women's Treatment Action Group 40 3.4 Society for Women and AIDS in Kenya 43 3.5 Sampada Grameen Mahila Sanstha 46 Section 4: PLWHA: People of Courage 51 4.1 AIDS Coalition to Unleash Power 55 4.2 Network of African People Living with HIV/AIDS 59 4.3 National Guidance and Empowerment Network of People Living with HIV/AIDS 62 4.4 Thai Network of People Living with HIV/AIDS 66 Section 5: FBOs: A Matter of Faith 73 5.1 Islamic Medical Association of Uganda 77 5.2 The Balm In Gilead 81 5.3 Wat Norea Peaceful Children 84 Section 6: Access to Treatment: Working Together 91 6.1 Advocacy Environment and Focus 96 6.2 Key Moments in South Africa's Access-to-Treatment Story, 1990–2002 99 6.3 Treatment Action Campaign 105 6.4 Health Systems Trust 108 6.5 Church of the Province of Southern Africa 110 6.6 National Health Committee of the African National Congress 113 ii Annexes 119 A. Glossary of Terms 121 B. Declarations 123 C. Other Resources for HIV/AIDS Advocacy 125 Mail-in Form 131 iii Acknowledgments This manual would not be possible without the time, expertise, and passion shared by the many HIV/AIDS advocates and allies committed to an HIV/AIDS response rooted in dignity and social justice for all. A heartfelt thank you to all whose work has contributed to what follows. In particular, we would like to extend a special thank you to the many HIV/AIDS advocates around the world who took the time to share their expertise, experiences, hopes, and challenges in order that their lessons learned might benefit others. We acknowledge not only the generosity with which different people shared their advocacy stories (and continued to be available for further questions and requests for information), but also the passion and love they communicated for the field of HIV/AIDS advocacy and the people and communities that are infected and affected by HIV/AIDS. Every interview informed and helped create this manual; ultimately, however, we were not able to highlight every organization’s experience. Although each story refers to an organization, the stories here do not necessarily represent an official account of its work. A special thanks as well to Karyn Kaplan, Joyce Hunter, Jan Baer, Tyler Crone, Subha Rabhagaravn, Talata Reeves, Marijose Vasquez, Montse Pineda, Nkululeko Nxesi and all the members of the National Association of People Living with HIV/AIDS (South Africa), and many others who help lay the ground work for advocates to grow and develop and for the field of advocacy to flourish. You are all inspiring. We also gratefully acknowledge the contributions of the following POLICY staff who developed some of the case studies and other sections of the manual: Anita Bhuyan, Anne Eckman, Anne Jorgensen, Pablo Magaz, and Susan Richiedei. In addition, the following POLICY staff contributed their commitment and technical skill to the review and production of this manual: Sarah Bradley, Uy Chanthon, Misha Coleman, Melanie Judge, Philippa Lawson, Nancy McGirr, Kevin Osborne, Veronica Padberg, Jo Pilgrim, Nikki Schaay, Lauren Taggart, and Felicity Young. Finally, we would like to thank POLICY’s technical officers and the U.S. Agency for International Development (USAID) for their excellent review and guidance: Clif Cortez and Diana Prieto of the Office of HIV/AIDS and Rose McCullough and Elizabeth Schoenecker of the Office of Population and Reproductive Health. The views expressed in this document, however, do not necessarily reflect those of USAID. Betsi Pendry, MPH Rachel Yassky, JD iv Abbreviations ACT UP AIDS Coalition to Unleash Power, New York AIDS Acquired immune deficiency syndrome ANC African National Congress ART Antiretroviral treatment ARV Antiretroviral AZT Zidovudine CA Cooperating agency CBO Community-based organization CCM Country Coordinating Mechanism CDC Centers for Disease Control and Prevention COSATU Coalition of South African Trade Unions CPSA Church of the Province of Southern Africa FAEPTI Family AIDS Education and Prevention Through Imams Project, Uganda FBO Faith-based organization FDA U.S. Food and Drug Administration FEIM Fundación para Estudio e Investigación de la Mujer (Foundation for Study and Research on Women), Argentina GFATM Global Fund to Fight AIDS, Tuberculosis and Malaria GIPA Greater Involvement of People Living with HIV/AIDS GNP+ Global Network of People Living with HIV/AIDS HAART Highly active antiretroviral therapy HIV Human immunodeficiency virus HST Health Systems Trust, South Africa ICPD International Conference on Population and Development ICW International Community of Women Living with HIV/AIDS IDU Injecting drug user IGAD Intergovernmental Authority on Development ILO International Labor Organization IMAU Islamic Medical Association of Uganda INP+ Indian Network of Positive People KS Kaposi’s sarcoma LAC Latin America and the Caribbean MSF Médecins sans frontières/Doctors Without Borders MSM Males who have sex with males MTCT Mother-to-child transmission (of HIV) NACOSA National AIDS Convention of South Africa NACP National AIDS Control Program(me) NACWOLA National Community of Women Living with HIV/AIDS, Uganda NAP+ Network of African People Living with HIV/AIDS, Kenya NAPWA National Association of People Living with HIV/AIDS, South Africa NEDLAC National Economic Development and Labour Council, South Africa NGEN+ National Guidance and Empowerment Network of People Living with HIV/AIDS, Uganda NGO Nongovernmental organization NPC Wat Norea Peaceful Children, Cambodia v OI Opportunistic infection PCP Pneumocystis carinii pneumonia PLWHA People living with HIV/AIDS PMTCT Prevention of mother-to-child transmission (of HIV) SACBC Southern Africa Catholic Bishops’ Conference SANGRAM Sampada Grameen Mahila Sanstha, India SMP Safety monitoring procedure STD Sexually transmitted disease STI Sexually transmitted infection SWAA Society for Women and AIDS in Africa SWAK Society for Women and AIDS in Kenya TAC Treatment Action Campaign, South Africa TASO The AIDS Support Organization, Uganda TB Tuberculosis TBA Traditional birth attendant TNP+ Thai Network of People Living with HIV/AIDS TRIPS Trade-Related Intellectual Property Rights UAC Uganda AIDS Council UNAIDS Joint United Nations Program on HIV/AIDS UNDCP United National International Drug Control Program UNDP Untied Nations Development Program UNESCO United Nations Educational, Scientific, and Cultural Organization UNFPA United Nations Population Fund UNGASS United Nations General Assembly Special Session on HIV/AIDS UNICEF United Nations Children’s Fund USAID United States Agency for International Development VAMP Veshya Ananyay Mukti Parishad, India VCT Voluntary counseling and testing WHO World Health Organization W-TAG Women’s Treatment Action Group, Uganda WTO World Trade Organization vi IntroductionIntroduction 2 SECTION 1 IInnttrroodduuccttiioonn:: MMoommeennttss iinn TTiimmee Advocacy strategies have long been part of campaigns to build support for a particular cause or struggle, and the history books are peppered with concrete examples of advocacy initiatives. Even in our own times, we have witnessed policy changes that can occur through the powerful persuasion of advocacy. Each successful advocacy strategy takes place in and represents a specific