Washington D.C., USA, July 2012www.aids2012.org Hearing from People Living with HIV: Global lessons from the PLHIV Stigma Index Laurel Sprague The Global Network of People Living with HIV, North America (GNP+NA) Wayne State University, Detroit, MI, USA

Washington D.C., USA, July 2012www.aids2012.org Why Ask People Living with HIV? Human dignity Reliability Appropriate for high and low prevalence settings –Salience –Replicable Identification of emerging trends Empowerment

Washington D.C., USA, July 2012www.aids2012.org Introducing the PLHIV Stigma Index Joint initiative of: International Community of Women Living with HIV (ICW) International Planned Parenthood Federation (IPPF) Joint Programme on HIV/AIDS (UNAIDS) Global Network of People Living with HIV (GNP+) Measures PLHIV experiences with stigma, discrimination, and human rights violations Participative research based in GIPA principle and human rights

Washington D.C., USA, July 2012www.aids2012.org Selection of Participants Purposive sampling Focus –3% of the number of people living with HIV in a country or sub-country region –Inclusion of key populations Goal –Data that is broadly indicative of the range of experiences of PLHIV in an area

Washington D.C., USA, July 2012www.aids2012.org What does the index look like? Factors of stigma and discrimination the questionnaire addresses: 1.Experience of stigma & discrimination from others 2.Access to work, education, and heath services 3.Internal stigma and fears 4.Rights, laws and policies 5.Effecting change 6.Testing & diagnosis 7.Disclosure & confidentiality 8.Treatment 9.Having children & reproductive and sexual health care 10.Self-assessment of effects of stigma & discrimination

Washington D.C., USA, July 2012www.aids2012.org Key Populations: Myanmar

Washington D.C., USA, July 2012www.aids2012.org Social Stigma in the UK In the last 12 months: 63% have been the subject of gossip – For 77% of these, this was in part or all because of HIV status 22% have been physically harassed – For 54% of these, this was in part or all because of HIV status

Washington D.C., USA, July 2012www.aids2012.org Family Exclusion in China Excluded from family life/activities: – 5% of sample Response to HIV infection was supportive or very supportive – 69% of spouses/partners – 62% of other adult family members – 80% of children However, what percent disclosed to close family members? – Only 50 to 61%

Washington D.C., USA, July 2012www.aids2012.org Discrimination by Health Care Workers Denial of health services because of HIV status in the last 12 months

Washington D.C., USA, July 2012www.aids2012.org Internalized Stigma “I avoided going to a local clinic / hospital when I needed to” (last 12 months)

Washington D.C., USA, July 2012www.aids2012.org Issues with HIV Testing Forced to Test (Tested without consent or without knowledge) Zambia13% Paraguay24% Poland29% Ukraine31% Estonia34% Philippines44% Moldova52% Turkey66%

Washington D.C., USA, July 2012www.aids2012.org Effecting Change in Kenya YesNo Yes75% (577)25% (192) No26% (74)74% (207) p=0.000 In the last 12 months, have you confronted, challenged or educated someone who was stigmatizing you? Are you a member of a PLHIV network?

Washington D.C., USA, July 2012www.aids2012.org Human Rights Violations in the Philippines 23% reported at least 1 human right abuse in the last 12 months Of these, 17% tried to get legal redress Main reasons for not attempting redress: – Intimidated or scared – Insufficient financial resources – No or little confidence of success

Washington D.C., USA, July 2012www.aids2012.org Impact of the Index Swaziland –Development of a National Framework to Address Stigma and Discrimination in Swaziland (currently in its final stages) –Implementation of an 'expert client' program in health facilities and communities –On-going human rights monitoring program in health facilities Fiji –Strengthened counselling services –Ensured inclusion of clauses on stigma and discrimination and confidentiality in the HIV decree of 2010 Estonia –Scale up voluntary counselling and testing (VCT) programs that ensured confidentiality –Initiative against workplace discrimination