PEOPLE LIVING WITH HIV ARE… Gathering Evidence for Advocacy

HIV Leadership through Accountability programme by Peter Nweke Network of People Living with HIV and AIDS in Nigeria 23 July 2012

Overview Leadership through Accountability Programme Evidence-gathering Building/strengthening campaign platforms Lessons learnt Key messages 3

The Leadership through Accountability (LTA) Programme Partnership: national networks of people living with HIV, civil society, GNP+ and WAC Joint work plan 5-year programme in 11 countries Supported by UKaid 4

Build evidence-based advocacy campaigns developed by and for PLHIV and civil society –Provide evidence on why it is important to achieve universal access; –Hold governments accountable for progress on achieving universal access goals. 5 Aim of LTA Programme

Role of the PLHIV networks NEPHWAN implemented the 5 tools in partnership with research institutes and broad based civil society partnerships GNP+ supported NEPWHAN to strengthen its ability to deliver evidence-based advocacy and their participation in national processes and mechanisms 6

Evidence-gathering tools Document experiences and perspectives of people living with HIV across thematic areas: –PLHIV Stigma Index –GIPA Report Card –SRHR Guidance Package –Global Criminalisation Scan –Human Rights Count! 7

Promoting and developing expertise: –Planning and design –Consultation and collaboration –Implementation: review tools, data collection, analysis, report-writing –M&E: tracking tool (budget breakdown, action plan, check lists) –Governance and accountability 8 Evidence-gathering Process

Documents laws, judicial practices and cases studies on the criminalisation of HIV transmission and exposure. Collaboration: GNP+ and regional & national networks of PLHIV Particularly relevant given the wave of criminlisation / ‘model laws’ in Africa GIPA Report Card Criminalisation Scan Opportunity for key stakeholders to assess the application of the GIPA principle in their country. 81 organsiations have been sampled. Collaboration: GNP+, ICW, UNAIDS Lack of awareness, poverty and stigma are signifcant barriers to GIPA PLHIV networks at grassroot level lack understanding of GIPA principle and its value

Human Rights Count Documents human rights violations against PLHIV Collaboration: GNP+ and regional & national networks of PLHIV Significant amount of work done training 40 interviewers on human rights Key areas where human rights violations occurred included workplaces, homes (from women and youth) SRHR Guidance Package  Recognises rights of PLHIV to health and satisfying sex lives  Collaboration: GNP+, ICW, Young Positives, EngenderHealth, IPPF, UNAIDS and others  National networks identified key groups & developed methodolygy for SRHR needs of: sero-discordant couples in Nigeria; PMTCT in Kenya; and Tanzania adolescents in Zambia; MSM in Cameroon and Senegal; women in Ethiopia and Moldova, LGBTI is South Africa & sex workers in Malawi

PLHIV Stigma Index o PLHIV stigma index measures trends in the stigma and discrimination experienced by PLHIV o Developed by founding partners: GNP+, ICW, IPPF, UNAIDS o Capacity is built: PLHIV lead the process at all levels o The questionnaire itself is designed to be an empowering experience for the respondents and interviewers: o Involved over ten of thousands of PLHIV as interviewees and hundreds as interviewers, programme managers, budget holders and advocates

Using Results in Nigeria Recommendations of the PLHIV Stigma Index was incorporated in NACA Joint Action Committee review for the year 2011 Results from the PLHIV SI and GIPA Report Card were prioritized from the among studies in advocating for the passage of the anti-discrimination bill into law 12

Using Results in Nigeria Absence of an existing civil society platform Limited democratic space to operate - no free access to lawmakers. Need to even review Anti-discrimination Bill and incorporate discrimination in health facilities, places of worship, communities, family, institutions of learning etc 13

Implementation Challenges Absence of an existing civil society platform Limited democratic space to operate - no free access to lawmakers. Need to even review Anti-discrimination Bill and incorporate discrimination in health facilities, places of worship, communities, family, institutions of learning etc 14

Achievements Partnerships built with CSOs, agencies, government, service providers... Evidence available to support advocacy Increased capacity to implement research Results shared at international conferences and at the 5th Nigeria AIDS conference in

Lessons Learned Collective participation builds organizational solidarity and results in a stronger advocacy voice Nigerian CSOs need to engage lobbyists with the mandate to carry the agitation to the next level after the visit, meeting, demonstration... 16

Thank you for listening...