1. Scaling up stigma? The Effect of ARV provision on stigma and VCT uptake Maria Roura, Mark Urassa, Joanna Busza, Benjamin Nhandi, Doris Mbata, Alison Wringe, Ray Nsigaye, Basia Zaba TAZAMA / NACP seminar Dar-es-Salaam, September 19 th 2008

2. Overview Background Background Methods Methods Findings Findings Conclusions Conclusions Policy recommendations Policy recommendations

3. HIV PREVENTION (safer behaviours) Maximised Synergies Background

4. Background Referral system established

5. Methods - data collection Trade centerRural areasTOTAL Community leaders335891 Village leaders4610 Ten-cell & Sub-village leaders184058 Faith leaders347 Village advisers (“maarufu”)6612 Traditional Healers224 PLHA393877 Male201838 Female192039 Health providers9716 Facility based7411 Community based235 TOTAL 184

6. ENACTED (discrimination) ENACTED (discrimination) EXPECTED (anticipated) EXPECTED (anticipated) INTERNALISED (self-stigma) INTERNALISED (self-stigma) Types of stigma Sources of stigma BURDEN BURDEN BLAME BLAME NEW SOURCES related to ARVs NEW SOURCES related to ARVs Emerging topics Preliminary coding framework Ongoing process NORMALISATION NORMALISATION COLLECTIVE DENIAL COLLECTIVE DENIAL “OTHERING” – blaming others “OTHERING” – blaming others Methods - data analysis

7. Back to productive activities Not being ‘the only one’ Increased social support ART contributes to HIV normalisation (ART users views) REDUCED SELF-STIGMA Positive impact on VCT uptake Findings I

8. “ It has become just like fever, it is for everybody, so I feel good” (ART user, trade centre) “I am not the only one…it takes even members of parliament” (male, trade centre) Towards a normalisation of HIV “Because of my health, I have taken four guys to the VCT centre” ( ART user, trade centre) Findings I

9. Pervasive blaming (Community views) Wide diversity of attitudes Exemptions from blame: accidental infection, powerlessness & extreme poverty HIV = MORAL CHOICE ANTICIPATED STIGMA Negative impact on VCT uptake Findings II

10. “…maybe s/he was very promiscuous. Now s/he has been caught” (VL2, semi rural) Pervasive blaming “A person fears a lot to be isolated by the community in case s/he is found with HIV” (group activity, ART users: males remote rural areas) Findings II

11. New sources of stigma related to ARVs (Village Leaders views) Findings III ART users perceived to ‘spread the disease’ ‘Moral outrage’ ‘Solutions’ mentioned by VLs: Marking ART users with a sign, isolation camps, impotence

12. “…when he will see that his health is good then he will continue spreading infections…” (VL10, remote rural) “Let him take these medicines and become fat but he should be made impotent “ (VL 1, semi rural) New sources of stigma related to ARVs Findings III

13. “Othering” and collective denial “Othering” and collective denial Attribution of AIDS symptoms to witchcraft Attribution of AIDS symptoms to witchcraft Perceived advantages of ‘Kondela’: Perceived advantages of ‘Kondela’: –Keeps hope in a definitive traditional cure –Turns ‘guilty’ into ‘victims’ : ‘cures’ stigma –Perpetuates uncertainty and ambiguity when HIV test is not performed COLLECTIVE DENIAL Negative impact on VCT uptake Findings IV

14. “Othering” and collective denial “Their relationship with him/her is good because they believe that s/he is bewitched… If they really knew that this person has AIDS it’s tough in the village. S/he is not taken care of. They say: ‘s/he wanted it, s/he liked it…s/he got it through sex”. (Maarafu 7, semi rural) Findings IV

15. ARV provision PLHA live longer, regain vigour and healthy appearance - BURDEN-related stigma decreases - SOCIAL SUPPORT from closest social networks increases (families, CTC, HBC providers). Reduced self- stigma NORMALISATION VCT uptake - BLAME related stigma persists - NEW SOURCES emerge: FEAR sexual transmission exacerbated + moral outrage Pervasive anticipated stigma COLLECTIVE DENIAL + sensit. Campaigns+ attrib. of HIV to WC - + Discussion

16. Conclusion The persistence of blaming attitudes and emergence of new sources of stigma directly related to ARV provision feed into high levels of HIV denial and counter- balance the potential positive impact of HIV normalization on VCT uptake

17. NORMALISATION NATIONAL LEVEL Testing of government leaders (Tanzania – Kikwete campaign ) LOCAL LEVEL - VCT local leaders (VEO, Blz, Vt, ‘Maarufu’, TH s) - Involving FLs in VCT promotion - Strengthening of VACs (training +budget) - Increased visibility + participation ART users - Raising awareness detrm. effects of stigma on VCT, ART and HIV transmission NATIONAL LEVEL Criminalization of HIV (many European and African countries) STIGMA SCALE-UP LOCAL LEVEL - Misinformation over HIV transmission risks (recently infected vs ART users)  FEAR - Moral exploitation of HIV to control behaviours  BLAME - Highly visible food support only to PLHA  MORAL OUTRAGE Policy implications HIV Normalisation or scaling-up stigma?

18. Policy recommendations Multilevel interventions emphasising community levelMultilevel interventions emphasising community level Wide coverage of training for MAC at village levelWide coverage of training for MAC at village level Need to target:Need to target: 1. PLHA + their families 2. Opinion Leaders  general population Improved image of PLHA  Chart of rights and responsibilitiesImproved image of PLHA  Chart of rights and responsibilities

19. Role of opinion leaders VCT uptake - Kisesa trade centre (March 2006- July 2008) 14th July 2008 Kikwete testing - National campaign 14th July 2007 Launching of National campaign TESTING OF TOP GOVERNMENT LEADERS 15% tested (nat level) 36% (3.2 million) Regional launch MWANZA 22 nd sept

20. Thanks!