Membership-based organisations in constitutional democracies Lessons from the Treatment Action Campaign By Barbara Klugman in conversation with Treatment Action Campaign national and Eastern Cape office-bearers and staff About the author Barbara Klugman (PhD) is a freelance strategy and evaluation practitioner. She supports strategy development and evaluation-for-learning with social justice donors, non-governmental organisations and social movements, and has published on the theory and practice of policy analysis and evaluating advocacy. Klugman is also a visiting associate professor at the School of Public Health, University of the Witwatersrand, South Africa, part-time co-coordinator of the newly established Constitutionalism Fund and chair of the board of the Urgent Action Fund-Africa. She has a long history of social justice activism, particularly for sexual and reproductive rights. Disclaimer Although everything has been done to verify timing, sequencing and facts around the Treatment Action Campaign's processes and outcomes, there may be occasional discrepancies as a result of a lack of historical data – particularly on membership and other institutional information but also on the dynamics of certain advocacy processes. The views and opinions expressed in this publication are those of the author and are not necessarily shared by The Atlantic Philanthropies. Photos unless otherwise stated © Treatment Action Campaign. Membership-based organisations in constitutional democracies Lessons from the Treatment Action Campaign By Barbara Klugman in conversation with Treatment Action Campaign national and Eastern Cape office-bearers and staff Published by The Atlantic Philanthropies September 2016 Acronyms & abbreviations AIDS Acquired immunodeficiency syndrome ANC African National Congress ARV(s) Antiretroviral (drugs) ASASA Advertising Standards Authority of South Africa BMET Budget Monitoring and Expenditure Tracking CAPRISA Centre for the AIDS Programme of Research in South Africa CDRA Community Development Resource Association CEO Chief executive officer COO Chief operating officer COSATU Congress of South African Trade Unions DENOSA Democratic Nursing Organisation of South Africa DoH Department of Health DTI Department of Trade and Industry EC Eastern Cape ECHCAC Eastern Cape Health Crisis Action Coalition GGLN Good Governance Learning Network Global Fund Global Fund to Fight AIDS, Tuberculosis and Malaria HCT HIV counselling and testing HIV Human immunodeficiency virus HOSPERSA Health & Other Services Personnel Trade Union of South Africa HPV Human papillomavirus IP Intellectual property LAC Local AIDS Council (the local arm of SANAC) LGBTI(s) Lesbian, gay, bisexual, transgender and intersex (people) M&E Monitoring and evaluation MBO Membership-based organisation MCC Medicines Control Council MDR Multi-drug resistant MEC Member of the Executive Council (cabinet) of provincial government MMC Medical male circumcision MSF Médecins Sans Frontières (Doctors Without Borders) NAPWA National Association of People Living with HIV and AIDS NGO Non-governmental organisation NSP National strategic plan (on HIV, STIs and TB) PCR Policy, communication and research PLWHA People living with HIV and AIDS PMTCT Prevention of mother-to-child transmission POWA People Opposing Women Abuse PTLP Prevention, treatment and literacy practitioner RCT Randomised clinical trial RHAP Rural Health Advocacy Project S27 Section27 SA South Africa SACC South African Council of Churches SANAC South African National AIDS Council SANDF South African National Defence Force SEED Sustainable Enterprise for Enabling Development SRHR Sexual and reproductive health and rights SSP Stop Stockouts Project STI Sexually transmitted infection TAC Treatment Action Campaign TB Tuberculosis UK United Kingdom UNAIDS Joint United Nations Programme on HIV/AIDS UNDP United Nations Development Programme UNFPA United Nations Population Fund US United States of America WHO World Health Organization Contents Acknowledgements Executive summary i 1. Introduction 1 The purpose of this report 1 Methodology 2 The Treatment Action Campaign at national level and in the Eastern Cape – numbers and reach 3 The reatmentT Action Campaign’s structure and overall strategy mix 5 2. The Treatment Action Campaign’s impact: 9 illustrative chains of actions and outcomes Winning and sustaining the right to treatment 10 Activism for access to affordable quality medicines 16 Challenging quackery 18 Identifying and addressing health system failures 21 What if there were no Treatment Action Campaign? 25 3. Which factors enable or challenge the 27 Treatment Action Campaign’s effectiveness? The power of voice 27 Scientific knowledge grounding action 35 Movement-building 41 Monitory democracy 50 Monetary tensions 57 Monitoring for donor accountability rather than organisational learning 63 4. Conc lusion: learning from the experience 67 of the Treatment Action Campaign Lessons for membership-based organisations 67 Lessons for funders 73 The reatmentT Action Campaign as of October 2015 78 5. References 81 Tables Table 1: Numbers of editions and stories about women and men in 28 Equal Treatment 2005-2014 Table 2: Themes and numbers of articles in Equal Treatment 2005-2014 36 Table 3: Key issues and numbers of articles in Equal Treatment 2005-2014 36 Table 4: TAC publications 2010-2015 37 Table 5: HCT, TB screening & condoms – numbers of beneficiaries reached 57 by the TAC on a national scale 2010-2014 Figures Figure 1: TAC members by province and gender 2014 4 F igure 2: TAC members living with HIV and AIDS by province and gender 2014 4 Figure 3: Numbers of TAC branches across South Africa as of October 2015 5 Figure 4: The AC’sT power flows from communities upwards; government 6 policies and budgets flow from top downwards Figure 5: The TAC’s multiple strategies 7 Figure 6: Reflection and learning as key dimensions of the organisational process 44 Boxes Box 1: Evidence that hounded a quack out of town – Alice 2013/2014 20 Box 2: The case of the Mthatha Medicines Depot 23 Box 3: The national Department of Health takes action on the Eastern Cape 24 Box 4: Insider and outsider strategies to achieve health service responsiveness 52 08 Membership-based organisations in constitutional democracies • Lessons from the Treatment Action Campaign Acknowledgements I would like to thank the Treatment Action Even within the Treatment Action Campaign there Campaign for allowing me to work on this case are multiple understandings of what it does and why study, sharing their valuable time with me and it does so, in part because its approaches are shaped allowing me to observe and engage them during by local political and cultural contexts and by the their own strategy meetings, in particular the quality of provincial and local health systems. My national office-bearers Anele Yawa, Sindi Blose analysis is wholly skewed by focusing specifically and Portia Serote and staff at the national office on the Eastern Cape. Any mistakes in fact or – Helen Chorlton, Marcus Low, Locunda Karam, interpretation in this document are mine alone. Fredalene Booysen, Malvin Nhaitayi and Lawrence Leseka; and the East London team – staff Noloyiso Barbara Klugman Ntamenthlo, Vovo Matiso-Gonyela, Zukile Madikizela, Chairperson Fikile Boyce and all those who attended the Eastern Cape initial consultation and subsequent workshop. Thanks also to James Taylor, Nomvula Dlamini and the rest of the Community Development Resource Association team for their generous transparency and willingness to let me interface with their evaluation processes. Thanks to all those who reviewed parts or all of this report in its draft stages and to the Rural Health Advocacy Project, Southern African HIV Clinicians Society and Health-e News who participated in the two conference panels which provided further insights. Lastly, thanks to Zola Madikizela and Gail Birkbeck of The Atlantic Philanthropies for giving me this opportunity, and to Dr Irwin Friedman of the SEED Trust for guiding the process. 10 Membership-based organisations in constitutional democracies • Lessons from the Treatment Action Campaign Executive summary This is a story of people who have to prevent and treat HIV, quackery, prohibitive least power in society holding patent laws and medicine prices, and continued government to account and stigmatisation of people living with HIV and AIDS by the public at large. supporting government in its efforts to offer services so that people can realise the right to health. It is Key elements of the a story of extraordinary processes Treatment Action and achievements emerging out of grass-roots activism. Campaign’s success In the early years of South Africa’s HIV and AIDS Voice and power from below crisis – with the dual problems of high costs of The TAC has branches both in urban and rural treatment and then a denialist government – the areas, including those most affected by the failing focus of the Treatment Action Campaign’s (TAC’s) health system. The TAC’s strength is its branches, activism was on achieving national policy that which work with individuals and communities. It would realise the rights of all people to treatment. supports individuals in making sense of information The TAC used mass mobilisation; built branches – ‘knowing the science’ – understanding their across seven provinces; gathered and used the best rights, dealing with internalised stigma that evidence available; engaged the media nationally prevents them from being able to take action,