1. Civil Society Feedback and Engagement with “The Global Plan Towards the Elimination of New HIV Infections among Children by 2015 and Keeping their Mothers Alive” Aditi Sharma International Treatment Preparedness Coalition (ITPC) On behalf of: Civil society representatives - Caritas Internationalis, ICW and m2m and NEPHAK - on the Global Steering Group (GSG) for the Global Plan. 8 December 2011, 16 th ICASA, Addis Ababa, Ethiopia

2. Acknowledgements Authors: Erika Baehr, Kay Marshall, Aditi Sharma, ITPC. With sincere thanks to, Mitch Besser and Robin Gorna of m2m, Beri Hull and Martha Tholanah of ICW, Lucy Ghati of NEPHAK, Robert Vitillo of Caritas Internationalis, and Sally Smith and Kate Thomson of UNAIDS for their support in developing and disseminating the survey and providing input to this presentation.

3. Methodology ITPC, with civil society representatives on GSG, developed a survey to gather feedback and build future engagement on implementation of the Global Plan Disseminated in English and French through partners and list serves in October 2011 Focus: Perceptions of the state of “PMTCT” programmes in their countries Level of community involvement in national “PMTCT” plans Interest in future engagement (incl: with the Global Plan) How civil society/community should be involved in national plans Support needed from GSG civil society representatives

4. About the respondents “I live in…” Full and partial survey responses received from approximately 140 people. 75 people from 40 countries told us what country they live in.

5. West & Central Africa Benin (2) Burkina Faso Cameroon (5) Congo (DR) (2) Cote d’Ivoire (3) Gambia Ghana Liberia Mali (3) Niger Nigeria (4) Sierra Leone East & Southern Africa Ethiopia Kenya (6) Malawi Namibia Rwanda Tanzania Uganda (6) South Africa (2) Zimbabwe (3) South Asia & the Pacific Australia Bangladesh India (4) Nepal Timor Leste East Asia & South East Asia Brunei Darussalam North Africa & Middle East Morocco Algeria Europe Ireland Moldova UK (2) Russia (2) Latin America Argentina Guatemala Mexico Nicaragua Caribbean Jamaica (2) Suriname Trinidad & Tobago

6. “I am a…” 94 respondents told us who they are according to the given categories. Categories not mutually exclusive and most of the respondents chose several. ‘Other’ category incl: researcher, local NGO staff, member of a national PLHIV network.

7. VERY LITTLE OR SOME PROGRESS 84% 87% 61% 78%

8. KEY CHALLENGES: Approach is not comprehensive Particularly, Prong 1 and 2 are not addressed Women need follow-up care and social support Health systems lack investment Stock-outs are commonplace No strategies to engage men Gap between policy and practice

9. Greatest obstacles to an effective and comprehensive programme to prevent vertical transmission of HIV inadequate funding lack of political will lack of awareness lack of involvement

10. WE WANT TO STAY INVOLVED Interested in continuing to provide feedback on the Global Plan Not interested

11. Women’s Groups 59% Key affected populations 53% Involved little or not at all BUT WE ARE NOT BEING INVOLVED…

12. WHY? Need capacity building to meaningfully engage “Civil society organizations in my country are still very weak and need to be strengthened to carry out their functions.” National AIDS Commission employee, Liberia Not just tokenism “Civil society is always brought in for the consultation stage, but have little to no significance with how final decisions are taken.” Health care worker and activist, India We want: Consultations – with geographic and demographic diversity Active and meaningful involvement in own languages

13. How should civil society be involved? “Part of the planning, part of the funding, part of the implementation” FBO staff member, Namibia “…should be responsible for communicating the global plan priority interventions at community levels and be involved in the monitoring and evaluation of these mechanisms and programmes. It has to be a 360-degree engagement for civil society involvement to be both meaningful and accountable.” Activist and health care worker, India

14. Full civil society involvement – especially of women living with HIV – in national plans “Must be involved from the needs assessment to the implementation and monitoring and evaluation of the new national plan.” Activist and woman living with HIV, Rwanda “Genuine discussion and openness to learning from civil society … not just at national level where policies are made, but at provincial level where they are often applied unilaterally, without prior consultation.” FBO staff member, South Africa

15. A positive women’s reference group is critical A watchdog group that caters for positive women Follow up the implementation of the plan. Woman living with HIV, Cameroon “… bring information/testimonies about how services are really operating.” Activist, Argentina “Not just women! We need to engage men too. The fact that we keep focusing on women is a problem. This is all our responsibility.” Anon

16. How can the global support us nationally “Build in-country capacity to help in resource mobilization and track progress in PMTCT programmes.” Activist and mentor mother, Kenya “The Global Steering Group should lobby the governments for participation of civil society organizations in decision-making and planning processes.” CBO staff member, Ethiopia

17. “If we could be supported in getting this information to the grassroots populations, then they could demand for what is due to them.” Woman living with HIV and CBO staff member, Uganda IT IS ABOUT OUR RIGHTS

18. OUR 3 DEMANDS  Engage women’s groups – not just because it is politically correct but to succeed in meeting the goals  Women at the heart - Ensure comprehensive care for women and don’t undermine their rights  Turn grand words spoken globally into adequately funded programmes rolled out nationally