TREATMENT ADVOCACY AND LITERACY CAMPAIGN

1. TREATMENT ADVOCACY AND LITERACY CAMPAIGN Who is TALC? PROFILE 2008W

2. Profile of TALC • TALC is a membership organization; founded and registered with Registrar of Societies in Zambia • TALC operates as a national organization with its Secretariat located in Lusaka. • The programme seeks to advocate for policy change and an equitable institutional and legal framework which emphasizes on policy change and behavioral change. • TALC seeks to address issues of HIV and AIDS through treatment literacy and treatment advocacy covering the entire continuum of treatment. • TALC was initially started by a group of AIDS/Treatment Activists, legal and human rights advocates that came together in 2004 to lobby for equitable, affordable and sustainable access to diagnosis, treatment, care and support for people living with HIV and AIDS in Zambia.

3. TALC Vision and Mission Vision of TALC • A healthy Zambian Society free of HIV and AIDS Mission of TALC • To advocate for equitable access to comprehensive and complete continuum of treatment, care and support for people living with HIV and AIDS and the affected

4. Core Values • Inclusion/Participation • Rights Based • Equity • Equality

5. TALC’s Main Objectives • To understand, articulate and advocate for improved systems, issues, concepts, practices in addressing existing and emerging issues related to treatment, access and care. • To use HIV and AIDS treatment, access and care issues as an entry point to understanding and addressing opportunities, needs and constraints of TALC communities and devising and promoting appropriate policy options for equitable access to and control of resources in relation to treatment, care and support of PLWHAs. • To engage and use advocacy in addressing issues of treatment, care and support for PLWHAs and affected.

6. Governance • TALC’s governed by a Constitution drawn by its general membership which is the supreme body of the organization • From the general membership, a Board is elected.

7. TALC NATIONAL STRUCTURE General Membership Board Secretariat Provincial Hubs Sub-Committees Research Advocacy IEC Women Youth Elderly /Grannies

8. National Presence • TALC has a presence in 7 provinces through satelite offices referred to as Provincial Hubs: These are in Lusaka, Central, Copperbelt, Western, Southern, North- western and Eastern. The organization also has contacts in the remaining two provinces (Luapula & Northern) • The hubs are organized at the provincial level with representatives from each district. • The work of the hub is to empower the people in a particular province in treatment literacy and advocacy skills and to compliment Government’s efforts in treatment information dissemination • TALC’s networks and stakeholders in the 7 regions identify mechanisms for scaling-up treatment literacy & treatment advocacy & enhance mechanisms for collaboration among the stakeholders that include Government through PATFs/DATFs

9. Hub Structure General Membership Provincial Board Provincial Coordinator District Hubs Sub-Committees Research Advocacy IEC Women Youth Elderly /Grannies

10. Membership • TALC has an organizational based membership with representation from: • Support Groups of people living with HIV and AIDS (PLWHA) • Non-Governmental Organisations (NGOs) • Community Based Organisations (CBOs) • Faith based Organisations (FBOs) • Researchers & human rights advocates

11. Networking and Linkages Local • Zambia AIDS Agenda Alliance (ZAAA), Zambia Workplace AIDS Programme (ZWAP) Regional • Southern Africa Treatment Access Movement (SATAMO), AIDS & Rights Alliance for Southern Africa (ARASA), Pan-African Treatment Access Movement (PATAM) International • World AIDS Campaign, G8 Civil Society, International Treatment Partnership Coalition (ITPC), UNITAID & Stop TB Partnership, Global AIDS Alliance & Health Gap (Global Access Project)

12. Some of Our Partners • National AIDS Council • Ministry of Health, • Forum Syd • International HIV/AIDS Alliance • Voluntary Service Overseas • Concern Worldwide • AfyaMzuri • Prisons Care & Counselling Association (PRISCCA) • Zambia AIDSLaw Research & Advocacy Network (ZARAN) • Southern Africa HIV & AIDS Information Service (SAfAIDS), • World Health Organization, • Joint United Nations Programme on AIDS (UNAIDS), • Health & Development Networks (HDN) • Zambia Tuberculosis & Leprosy Trust (ZATULET) • 80:20

13. Our Funders • Hivos • Stephen Lewis Foundation • American Jewish World Service (AJWS) • Forum Syd • Concern Worldwide • Global AIDS Alliance • Diakonia (Strategic Planning process)

14. Programme Areas • Lobby and Advocacy • Treatment literacy information, education and communication • Care and support for people living with HIV/AIDS (prevention and positive living community drive) • Capacity building of TALC Provincial Hubs and district Hub structures

15. Treatment Literacy and Advocacy as defined by TALC • Organizations use different terminology to refer to treatment literacy, education & communication around ART & HIV/AIDS • Treatment literacy could be seen as forming the bridge between the provision of treatment & the preparation & involvement of people & communities in comprehensive responses to HIV and AIDS • Treatment literacy encourages people to know their HIV status, explain how to get access to treatment, offers information on drug regimens, offers support & ideas for adhering to treatment & helping others to do so, emphasises the importance of maintaining protective behaviours and healthy living, & suggests strategies for overcoming stigma & discrimination and gender equality

16. Treatment Literacy & advocacy…cont’d • Treatment literacy means people both individually & in communities understand what ARVs are, why they are needed & what they can and cannot do; • Treatment literacy translates medical information about ART into languages and formats that are accessible to everyone; • Advocacy is a process of using information strategically to change policies that affect the lives of disadvantaged people, PLWHAs and those affected by it; • The main focus in the advocacy campaign is to target the Government to come up with appropriate policies and practices in relation to issues of treatment, prevention, care and support

17. Record of HIV Programmes Treatment Literacy at TALC • Since inception TALC has been offering free treatment literacy trainings at its offices to its members • TALC also ensures there is a treatment literacy component in its quarterly meetings to members • often inviting scientists, doctors and other health experts to provide information and answers to questions from members about relevant issues

18. Free TALC Treatment Literacy Sessions

19. Treatment Advocacy • Advocacy is fundamental to the work of TALC • Advocacy issues are identified by TALC Secretariat staff and TALC members, based on personal experiences, media reports, policy decisions, research and current events. • When TALC identifies issues of concern the members and staff take an active approach to developing specific and dedicated advocacy tools and programs to address the issue in short-term and longer-term basis

20. Examples of TALC’s Advocacy Work • Media releases, press conferences, radio & TV talk shows interviews, • Publishing Talcing points on issues of concern • Holding public marches and peaceful demonstrations, • Presenting petitions to Government and attending policy and decision making forums to ensure meaningful involvement of PLWHAs & those affected • Parliamentary Submission (Committee on Health) – Fake Cures & PMTCT • Networking, collaborative efforts and internet connections with stakeholders at national, regional & international level (UNITAID partnership)

21. The AIDS March – 29 July, 2006

22. AIDS March Cont’d

23. Call to action – protecting people from fake AIDS cures

24. Call to action – protecting people from fake AIDS cures

25. Research conducted by TALC • Election Questionnaire • TB/HIV Co-infection • Missing The Target 4 & 6 • Task Shifting on a joint WHO/UNAIDS/PEPFAR Collaboration through connections with Health Gap (Global Access Movement) • TALC contributed to publication of a book by WHO on global guidelines & recommendations on task shifting on a “treat, train & retain” approach which were later launched through the Addis Ababa Declaration in January 2008.

26. Election Questionnaire Cont’d

27. Publications • My Mum has HIV Book • TALCing Points • Newsletters

28. The US Ambassador reading the ‘My Mum has HIV’ book to children at the Launch

29. Outreach programmes • Mass VCT Day (June 30) • TALcing HIV in Churches • Global Week of Action • Exhibition during the Agriculture Commercial show (second best NGO with DAPP in 2007)

30. Sensitisation during Mass VCT Day

31. Challenges Advocacy being perceived as anti-government; Non- availability and access to funds for treatment literacy and advocacy work; High illiteracy levels especially in rural areas makes work difficult; Unhealthy civil society competitions in the area of HIV/AIDS & advocacy;

32. Opportunities TALC having been recognized as a leading civil society organization in community mobilization by the National AIDS Council; The political will demonstrated by government in the fight against HIV and AIDS through creation of structures within Government and Civil Society to coordinate efforts among the various stakeholders in the quest to combat HIV and AIDS; A commitment by international partners and other financing initiatives to fund HIV and AIDS programmes; A decentralized health structure that is integrated into provincial, district and community level structures; A high level coordinating body (National AIDS Council)

33. Way Forward • The way forward lies in the 3 Year strategic plan that the organization has managed to put up together with cooperating partners. • This 3 year plan outlines the strategic direction which the organization will take from now up to 2010.