Hearing from People Living with HIV: Global lessons from the PLHIV Stigma Index

1. 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

2. Why Ask People Living with HIV? • Human dignity • Reliability • Appropriate for high and low prevalence settings • Salience • Replicable • Identification of emerging trends • Empowerment

3. 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

4. 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

5. What does the index look like? Factors of stigma and discrimination the questionnaire addresses: Experience of stigma & discrimination from others Access to work, education, and heath services Internal stigma and fears Rights, laws and policies Effecting change Testing & diagnosis Disclosure & confidentiality Treatment Having children & reproductive and sexual health care Self-assessment of effects of stigma & discrimination

6. Key Populations: Myanmar

7. 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

8. 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%

9. Discrimination by Health Care Workers Denial of health services because of HIV status in the last 12 months

10. Internalized Stigma “I avoided going to a local clinic / hospital when I needed to” (last 12 months)

11. Issues with HIV Testing

12. Effecting Change in Kenya In the last 12 months, have you confronted, challenged or educated someone who was stigmatizing you? Are you a member of a PLHIV network? p=0.000

13. 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

14. 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