Fragile access to HIV treatment and stigma: the experience of living with HIV in Serbia and Montenegro

1. Fragile access to HIV treatment and stigma: the experience of living with HIV in Serbia and Montenegro Sarah Bernays and Tim Rhodes London School of Hygiene and Tropical Medicine. WHEN HIV/ AIDS briefing- 23rd November 2007

2. Relevance of case study • Serbia and Montenegro: 100% access to HIV state-funded treatment but not 100% delivery • Context of HIV treatment global scale up - case study has relevance regionally and globally • Understand impact of insecure access to HIV treatment and high stigma on ‘living with HIV’. WHEN HIV/ AIDS briefing- 23rd November 2007

3. HIV in Serbia and Montenegro • Eastern Europe and Central Asia (Dec 2007): • 1.6 million people living with HIV (PLHIV)Source: UNAIDS Epidemic update 2007. UNAIDS, Geneva. • Serbia (Dec 2006): • cumulative HIV/AIDS cases 2,103 • 1,137 registered PLHIV • approximately 600 PLHIV receiving HAART Source: Serbian Republican Institute for Public Health, Belgrade 2007. • Montenegro (Dec 2006) • 43 registered PLHIV • 22 PLHIV receiving HAART Source: Institute of Public Health, Montenegro, 2006. Serbia and Montenegro WHEN HIV/ AIDS briefing- 23rd November 2007

4. What we did • Qualitative research- 2005-2007 • Baseline study-2005-2006 • UK’s department for International Development (DfID) funded • In-depth interviews • 40 people living with HIV (PLHIV) and 18 service providers • Prospective study- 2006-2007 • Economic and Social Research Council (ESRC) funded • Followed up 20 PLHIV • 3 further interviews with each participants+ written and/ or audio diaries WHEN HIV/ AIDS briefing- 23rd November 2007

5. Findings: Access to HIV treatment perceived as insecure High levels of stigma Interaction- significant consequences for: • PLHIV’s quality of life • HIV= manageable chronic illness? • Participation in community action • Efficacy of prevention efforts WHEN HIV/ AIDS briefing- 23rd November 2007

6. Access to HIV treatment perceived as uncertain • Delivery problems (high burden of financial costs, small market, protracted licensing)->shortages of drugs and monitoring tests= unstructured interruptions and unmonitored conditions • Anxiety caused by failings in system absorbed by individuals • 2006-2007 seen improvements in the provision of continuous, appropriate therapy WHEN HIV/ AIDS briefing- 23rd November 2007

7. Impact of treatment uncertainty • HIV treatment access and delivery continues to be perceived as fragile. • “It’s very depressing you know to go there and to wait so many hours and every time is the same fear, ‘will there be some medicines or not’. I’m living with this fear”. Interview, Sept 2007. • Serbia- transitional state. Context of uncertainty: politics, economy, regional position, possible future conflict- seen as threats to HIV treatment opportunity. WHEN HIV/ AIDS briefing- 23rd November 2007

8. Stigma: Institutional access • Institutional access (health care and social welfare) • Disclosure- risk to access • “None of them wanted to operate on his broken jaw, because he said he was HIV positive. They had a team meeting, to make the decision on who would do the surgery on this patient and in the end they told me they couldn’t operate on him. He was angry. It’s 2007, it happened some twenty days ago, when he was rejected by the doctors.”Interview, September 2007. • Frequently experience poor treatment when receive care • “ He cleaned the table and he removed the chair so that I could not sit and talk with him. I was supposed to stand. I just asked him for a referral paper and he started to clean the table with alcohol again. The main thing he was interested in was how I became ill. I never went to that institution again.” Interview, August 2005. WHEN HIV/ AIDS briefing- 23rd November 2007

9. Stigma: employment and poverty • Restricted access to seeking, attaining and maintaining employment. • Increased poverty post diagnosis. • Reduced capacity to respond to treatment difficulties • “I have no income. Anyone who finds out about my status or my history they take me for a day and when they check they don’t want me there anymore and so I couldn’t afford treatment for myself.”Interview April, 2006. WHEN HIV/ AIDS briefing- 23rd November 2007

10. Stigma: communities, friends and families, • Community response: • “I had terrible stress in April because of that woman downstairs, who shouted from her terrace, ‘He has AIDS! Get away from him!’ And then some bloke from my building when I pass by says, ‘ He should be treated with a stick!’ I didn’t react at all, I didn’t want to mess around… I was shivering. I neither had the physical or psychological strength to confront them.”Interview, June 2006. • Family response: • Quarantined in own home by families. • Those supportive, consequences for families: “I mean dad’s like well-known in town… He had a lot of friends, a lot… as dad says you didn’t know how many people went through the house in a month, now he says only two or three people come over. The house’s like died out. A lot… No one will come, everyone’s afraid.”Interview, August 2007. • Retreat and isolation • “Loneliness kills, not AIDS”. Diary, May 2007. WHEN HIV/ AIDS briefing- 23rd November 2007

11. Distrust • Priority for many- concealment of status- distrust response • Who or what to trust? • Scarce treatment information- rumour • Rationed expertise- overstretched resources • Institutional ‘care’- perceived to reinforce stigma • Lack of community action (not engaged on treatment issues, fluid turnover of organisations). WHEN HIV/ AIDS briefing- 23rd November 2007

12. Conclusion • Stigma shapes HIV treatment access: • Unable to speak out • Risks from disclosing status • Energy-> chasing/ securing treatment • Remains a hidden, unresolved issue. • Fragile treatment access exacerbates stigma: • Reduces trust in provision and support services • Treatment anxiety and distrust reduce involvement in community action. • Weakens action against stigma • Increases sense of isolation • Lack of confidence in sustainability of treatment access and poor progress on fighting stigma- possible impact on efficacy of prevention efforts. WHEN HIV/ AIDS briefing- 23rd November 2007

13. Implications for action • Recommendations (some pursued currently): • Robust contingency strategies in event of treatment shortages- stocks and information • Regional procurement coalitions • HIV NGOs engage with treatment support (action on access, literacy) • Identify forums in which voices of PLHIV can be heard and listened to. • Commitments to universal access must also commit to securing continuous treatment if HIV is to be meaningfully described as a ‘manageable chronic illness’ • Curb physiological development of HIV/AIDS • Counter stigma through community mobilisation and improving the quality of life for PLHIV- in Serbia and elsewhere. WHEN HIV/ AIDS briefing- 23rd November 2007

14. Resources from study • Baseline study UN report available today: • S. Bernays, T. Rhodes, A. Prodanovic, 2007. HIV treatment access, delivery and uncertainty: a qualitative study in Serbia and Montenegro. UNDP, Belgrade. • Available early 2008: • Advocacy and training kit- including diary extracts. • Radio documentaries with participants. • Further details: sarah.bernays@lshtm.ac.uk or tim.rhodes@lshtm.ac.uk WHEN HIV/ AIDS briefing- 23rd November 2007