The value of PLHIV led research - how to change laws, policies and practice with less

1. The value of PLHIV led research - how to change laws, policies and practice with less Eddie Banda TUPDD0102 part of TUPDD01 Curious Social Scientists: Innovative Approaches and Questions Oral Poster Discussion Session : Track D Venue: Room 101-102 Time:22.07.2014, 13:00 - 14:00

2. Leadership Through Accountability Project?Background • The Leadership Through Accountability Programme (LTA) was managed by The Global Network of People Living with HIV (GNP+),with World AIDS Campaign (WACI) from August 2008 to September 2013. • UK AID through the UK’s Department of International development provided funding of £4,099,699 to the LTA programme as part of the Governance and Transparency Fund (GTF). • The programme was about research on issues of stigma, discrimination and human rights accompanied by evidence-based campaigning with the aim to assist governments to deliver coordinated and effective responses to HIV and AIDS • 10 countries benefitted from the programme, namely Cameroon, Ethiopia, Kenya, Malawi, Moldova, Nigeria, Senegal, South Africa, Tanzania and Zambia

3. Evidence Gathering ToolsWhat were they ? The programme was about research on issues of stigma, discrimination and human rights accompanied by evidence-based campaigning with the aim to assist governments to deliver coordinated and effective responses to HIV and AIDS. • The People Living with HIV Stigma Index – collects and examines HIV-related stigma experienced by PLHIV, exploring its direct and indirect impacts on individuals. The Index is able to measure geographical, demographic and temporal trends. • Global Criminalisation Scan - documents existing legislation on criminalisation of HIV transmission and cases when the laws have been used to criminalise persons with HIV. Furthermore, the Global Criminalisation Scan supports the development of appropriate advocacy and actions to respond to current legislation. • The Greater Involvement of People living with HIV/AIDS (GIPA) Report Card - identifies existing levels of the application of the GIPA principle in-country and provides insights on how the participation of PLHIV can be made more meaningful. • Human Rights Count! – Aims to document cases of HIV-related human rights violations experienced by women, men and excluded individuals living with HIV. • Advancing the Sexual and Reproductive Health and Rights of People Living with HIV: A Guidance Package - The Guidance Package raises awareness of sexual and reproductive health and rights of PLHIV and provides 12 practical programmatic recommendations for responses aimed at the general population.

4. Success story for Malawi based on the project • Based on the evidence from The Stigma Index the Malawi Network of People living with HIV (MANET+) developed 5 policy briefs for Advocacy, one of which was “ Quality Treatment Now ! Getting to zero stigma and discrimination” - used in a strategic campaign to call on the government to remove the use of ant retroviral drugs containing stavudine (d4T) known for its toxicities • Another one “ Call for Increased access to HIV and AIDS treatment and Sexual and reproductive Health services for those who need them” – demanded for the government to guarantee protection of rights of minorities by ensuring that the services were provided without barriers

5. Impact of the LTA Programme: Key findings from stakeholders andfrom an independent evaluation • 64% of scores indicating high to very high impact on final beneficiaries due to increased self-esteem and awareness about rights • Changes in access to services and quality of treatment for up to 633,352 PLHIV in at least 6 countries • Access to justice for 73 PLHIV in at least 3 countries • Changes in policy environment for up to 4,080,000 PLHIV in at least 2 countries • Other indicators included; relevance, efficiency, equity, sustainability and replicability; these are better detailed in the poster

6. 2009-2013

7. Project countries Cameroon, Ethiopia, Kenya, Malawi, Moldova, Nigeria, Senegal, South Africa, Tanzania, Zambia

8. “In my 20 years of HIV grassroots work I have never seen something like the LTA programme: evidence-based strategic plans, gathered by organisations themselves, work plans with meaningful indicators, real-time tracking of campaigns. This makes them impressively attractive to potential partners.” External LTA Stakeholder

9. “It is through collective actions that we are able to ensure our human rights are protected … that everyone has access to treatment and services and we [people living with HIV] are indeed a part of the solution.” Tanzanian participant (NACOPHA)

11. “... the evidence has increased our credibility within government and decision-making structures. We can hold government to account because we have the evidence however, we need to build accountability of the networks and civil society in to our work. This needs to be resourced.” Nigerian participant (NEPWHAN)

12. Janet’s Story

13. Without the project… “More people would be dying due to self-stigma. They would simply shy away, would not access services and die in solitude.” Stakeholder from northern Zambia