1. AVVAIS, RBC/IHDPC, RRP +, UNAIDS SAHARA CONFERENCE Port-Elisabeth, South Africa HIV Stigma Index 2009 Rwanda November 28 to December 2, 2011

2. Presentation Outline Introduction: Why focusing on stigma and Discrimination? Objectives of the study Methods Key findings 2

3. Introduction: Why focusing on stigma & discrimination? Stigma & discrimination are a health and human rights issue Stigma & Discrimination constitute a barrier to AIDS response Limit universal access to: Prevention services, counseling & testing Treatment (seek services outside own community out of fear) Care and support (postponing or rejecting care) 3

4. Why focusing on S & D (cont’d…) Stigma & Discrimination affect more women and girls, MARPs in general and vulnerable people e.g. sex workers, widows, prisoners and TB patients 4

5. Situation of stigma & discrimination issues in Rwanda The Government of Rwanda has classified PLHA as a priority group for prevention, care, treatment, and support (NSP, 2009-2012). 46% males & 51% females had accepting attitudes towards stigma & discrimination (DHS, 2005) 5

6. Objectives of the study To collect info on Stigma & Discrimination (S&D) against members of the Network of PLHA that will help to understand & reduce S&D in the country. Specifically: –To document the various experiences of PLHA –To provide an evidence base for advocacy, policy change and programme interventions to address S&D related to HIV. 6

7. Methods Used Stigma Index questionnaire (quantitative & Qualitative) Selection Criteria: Members of PLHA Network aged 18 years & older, Association with at least 50 members and with 2+ years old; member of the Network Sample size: –There were about 1,500 associations of PLHA with +/-1000 members of the Rwanda Network of PLHA –38 Associations in total were surveyed –Random selection of 2 districts per Province 7

8. Methods (Cont’d…) –Estimated sample size: 1640 individuals –Purposively included all HIV+ males into sample since women formed 90% of members Interviewed up to 1560 PLHIV individuals located in 10 districts across Rwanda Self-reporting was the most applied approach during interviews 8

9. Ethics Study approved by RBC/IHDPC & NISR Ethics Committees Used information sheet and informed consent forms in Kinyarwanda before starting an interview Emphasized respondent rights to freely participate in and withdraw from study Protected identify of respondents Interviewed participants of 18 years and older 9

10. Key findings outline Demographic characteristics of PLHA Experience of HIV-related stigma and discrimination (12 months preceding the survey) Experience of Testing, Disclosure, Treatment and having children (12 months preceding the survey) 10

11. Current relationship status 11

12. Duration of living with HIV 12 Sixty-four (64%) reported to have lived with HIV within five years preceding the survey.

13. Perceived experience with HIV related stigma and discrimination HIV was perceived as the main reason (69%) for discrimination in terms of exclusion from family activities, being gossiped about and physical harassment Of those who experienced exclusion, 65% respondents reported exclusion from religious and family activities; 72% of females and 70% males respectively reported exclusion from family activities and being gossiped about 13

14. Access to social services during 12 months preceding the study 39% thought they lost jobs because of their HIV+ status 66% felt obliged to stop working due to poor health 14

15. Internal stigma and fears Women: Anticipation of fear of being gossiped, verbally insulted, harassed and/or threatened was higher (44%) for females than males (38%), Men: More men (47%) than females (41%) feared that someone would not want to be sexually intimate with them because of HIV infection. 15

16. Internal stigma and fears (cont’d…) 45% of respondents in total reported they felt ashamed because of their HIV+ status The main forms of internal stigma were feelings of guilt (27%), self-blame (25%) and low self esteem (22%) 16

17. Rights, Laws And Policies About 50% of respondents were aware of the Declaration of Commitment on HIV to protect rights of PLHIV 10% thought to have been denied health insurance due to their HIV+ status 17

18. Effecting change 80% said they supported other PLHA emotionally and physically There was low knowledge (25%) of organizations that help care for PLHIV, except the network of PLHIV about ¼ of respondents reported they had influence in policy and programmes locally & wider 18

19. Testing and diagnosis 22% tested for HIV because of pregnancy Only 4% tested to prepare for marriage/sexual relationship. Of those who tested, 79% made a decision to test on their own and had both pre and post HIV test counselling. 19

20. Disclosure & Confidentiality 88% of men disclosed to partners while 84% of females to their children. 60% of respondents reported “felt” pressure to disclose their HIV status from other individuals not living with HIV ¾ reported they felt confident medical records are kept confidential 20

21. Treatment 75% had access to ARVs and treatment for opportunistic infections. 75% discussed with a health care professional subject of HIV-related treatment options in the 12 months preceding the survey 21

22. Self-reported health status associated with economic and quality of health care 75% had access to ARVs and treatment for opportunistic infections. 75% discussed with a health care professional subject of HIV-related treatment options in 12 months preceding the survey 22

23. Self-reported health status associated with economic status and quality of health care 23

24. Experience of having children 88% of respondents said they had children 77% said were advised not to have children. Over 50% of female respondents had received ARV for PMTCT. 24

25. Conclusion The Stigma & Discrimination findings suggest unmet needs in terms of interventions towards empowering PLWA and increased HIV prevention, care and treatment 25

26. END THANK YOU 26