MODELS for dialogue Between PLHIV networks & Religious Leaders and Faith Communities Christoforos Mallouris 29 November 2011, Toronto

Outline BackgroundBackground Evidence informed response - PLHIV evidence, some examplesEvidence informed response - PLHIV evidence, some examples Response from faith communities and religious leadersResponse from faith communities and religious leaders Determining the scope of dialogue to inform model developmentDetermining the scope of dialogue to inform model development ConclusionsConclusions Group workGroup work

Models for Dialogue Religious Leaders Summit, Netherlands 2010Religious Leaders Summit, Netherlands 2010 Religious Leaders’ Commitment for ActionReligious Leaders’ Commitment for Action Immense responseImmense response In parallel evidence from PLHIV Stigma Index and other methodologies pointing towards need for action and dialogueIn parallel evidence from PLHIV Stigma Index and other methodologies pointing towards need for action and dialogue Dialogue does happen, but can be supported to be more systematic, systemic, and quality assuredDialogue does happen, but can be supported to be more systematic, systemic, and quality assured

Evidence base PLHIV Stigma Index Representative survey on stigma and discrimination faced by PLHIV (external and internal)Representative survey on stigma and discrimination faced by PLHIV (external and internal) Participatory research by and for PLHIV, led by national PLHIV networksParticipatory research by and for PLHIV, led by national PLHIV networks Process is as important as the evidence gatheredProcess is as important as the evidence gathered Evidence forms the base for development of actionEvidence forms the base for development of action PLHIV Stigma Index results for monitoring progressPLHIV Stigma Index results for monitoring progress International coordination (GNP+, ICW, UNAIDS) and informing global and regional levelInternational coordination (GNP+, ICW, UNAIDS) and informing global and regional level

PLHIV Stigma Index Over 30 countries in process of roll-out, finalisation, reporting or post-reporting actionOver 30 countries in process of roll-out, finalisation, reporting or post-reporting action Draft reports from Ukraine, Ethiopia, Kenya, Nigeria, Zambia, Myanmar (2010 – 2011)Draft reports from Ukraine, Ethiopia, Kenya, Nigeria, Zambia, Myanmar (2010 – 2011) What is relevant to model for dialogue?What is relevant to model for dialogue? Stigma in religious settings / places of worshipStigma in religious settings / places of worship Levels of disclosure to religious leaders and relevance of faith communities to PLHIVLevels of disclosure to religious leaders and relevance of faith communities to PLHIV General experiences within the community and possibilities for action for faith communitiesGeneral experiences within the community and possibilities for action for faith communities Internal stigma impacting on access to one’s faith, spiritual support and psychosocial status and access to servicesInternal stigma impacting on access to one’s faith, spiritual support and psychosocial status and access to services

PLHIV Stigma Index Compared to levels of disclosure to religious leaders Levels of stigma experienced in religious activities/places of worship

Evidence (contd.) Figure 3.3: Percentage of respondents that reported exclusion from religious activities or places of worship in the last 12 months by the religious group they belong to, 2010 (Ethiopia PLHIV Stigma Index Report)

Key populations – where is the data? Percent distribution of respondents who had been excluded from religious activities in the last 12 months (Zambia)

Qualitative DATA “A religious organization revealed the result of my HIV test. The leader of this organization forbade members to visit my home”. Sagaing Division “I try to console myself with religion”. Yangon Division (Myanmar PLHIV Stigma Index Report)

Beyond Faith… Table 2: General stigma and discrimination in the previous 12 months (Kenya, PLHIV Stigma Index Report) About 30% physically assaulted! Over 50% verbally assaulted! About 40% excluded from social gatherings!

Internal stigma Table 3.10: Percentage distribution of perception and fears respondents had had for themselves as a result of their HIV-positive status by gender and place of residence, 2010 (Ethiopia)

Internal stigma Figure 6 indicates what respondents think lies behind the HIV-related stigma they experienced. (Kenya)

Key populations Myanmar

Access to health Fig Integral indicator: People who faced restrictions during the last 12 months in access to social and health care services for reasons that included HIV status (by social groups, %) (Ukraine)

Sexual and Reproductive Health and Rights needs Myanmar

Impact on employment Myanmar

The role of FBOS In combating Stigma? Table 4.11: Types of organisations rendering support on stigma mentioned by respondents, 2010 (Respondents'’ knowledge; Ethiopia)

Other PLHIV evidence Interviews with PLHIV regarding their needs or experiences with faith communities and religious leaders (stigma reduction? support for food security and employment opportunities?)Interviews with PLHIV regarding their needs or experiences with faith communities and religious leaders (stigma reduction? support for food security and employment opportunities?) Reports of PLHIV not accessing ART based on advice from religious leaders (anecdotal? Unknown how serious this issue is?)Reports of PLHIV not accessing ART based on advice from religious leaders (anecdotal? Unknown how serious this issue is?) Other?.... Very little evidence on support needed and given from the PLHIV perspectiveOther?.... Very little evidence on support needed and given from the PLHIV perspective

Response from faith community Spiritual supportSpiritual support Orphans and vulnerable children and family supportOrphans and vulnerable children and family support Addressing stigma and discrimination in the communityAddressing stigma and discrimination in the community Service providers (treatment, care and support)Service providers (treatment, care and support) Gender based violence (some)Gender based violence (some) PMTCT (some)PMTCT (some) Very little information onVery little information on The most affected populationsThe most affected populations PreventionPrevention Harm reductionHarm reduction SRHRSRHR Multi-faith responsesMulti-faith responses

Some Conclusions IS there scope for MORE? Current programmes tend to focus on ‘general population’ of PLHIVCurrent programmes tend to focus on ‘general population’ of PLHIV Similar (consistent) policies on some issues and variant (inconsistent) practice on other issuesSimilar (consistent) policies on some issues and variant (inconsistent) practice on other issues Documented and anecdotal evidence varianceDocumented and anecdotal evidence variance The role of faith communities to address issues within faith community AND/OR the role of faith communities to address needs of PLHIV beyond faithThe role of faith communities to address issues within faith community AND/OR the role of faith communities to address needs of PLHIV beyond faith Possibilities for Dialogue and Collaboration Concentrate on what is currently being done well and agreement on how to do proeceed where there is disagreement (may not correspond to evidence- based PLHIV priorities; but low resources and time investments)Concentrate on what is currently being done well and agreement on how to do proeceed where there is disagreement (may not correspond to evidence- based PLHIV priorities; but low resources and time investments) Expand to more ‘difficult’ thematic areas (corresponding to evidence-based PLHIV priorities; but higher ‘internal’ policy and practice reflection and change with long-term commitment of time and resouces)Expand to more ‘difficult’ thematic areas (corresponding to evidence-based PLHIV priorities; but higher ‘internal’ policy and practice reflection and change with long-term commitment of time and resouces)

Determining scope of dialogue SurveySurvey What do PLHIV need as priorities? And what are the perceived priorities of PLHIV by religious leaders and faith leaders? What are experiences of religious leaders living with HIV? What are the experiences of religious leaders in responding to needs of PLHIV?What do PLHIV need as priorities? And what are the perceived priorities of PLHIV by religious leaders and faith leaders? What are experiences of religious leaders living with HIV? What are the experiences of religious leaders in responding to needs of PLHIV? Most importantly… what do PLHIV expect from religious leaders and faith communities? And likewise, what do faith communities and religious leaders expect from PLHIV?Most importantly… what do PLHIV expect from religious leaders and faith communities? And likewise, what do faith communities and religious leaders expect from PLHIV? Coming to a common groundComing to a common ground Interviews (PLHIV networks, religious leaders, faith based organisations)Interviews (PLHIV networks, religious leaders, faith based organisations) Model development (draft, based on above)Model development (draft, based on above) Testing at country level (2 countries)Testing at country level (2 countries) Revision following testingRevision following testing Dissemination of findings and modelDissemination of findings and model Evaluation and long-term monitoring (?)Evaluation and long-term monitoring (?)

Group Work Using the PLHIV Stigma Index evidence to spark discussion, not go into details on the methodologyUsing the PLHIV Stigma Index evidence to spark discussion, not go into details on the methodology What are opportunities for dialogue and areas of action?What are opportunities for dialogue and areas of action? What are the challenges?What are the challenges? What are success factors and ways to overcome challenges?What are success factors and ways to overcome challenges? What is possible, what is not?What is possible, what is not? Concentrate on what is possible now? Or move towards making what is now impossible to possible in the long-term?Concentrate on what is possible now? Or move towards making what is now impossible to possible in the long-term? What are the expectations from each stakeholder?What are the expectations from each stakeholder?