Fragile%20access%20to%20HIV%20treatment%20and%20stigma:%20the%20experience%20of%20living%20with%20HIV%20in%20Serbia%20and%20Montenegro - PowerPoint PPT Presentation

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WHEN HIV/ AIDS briefing- 23rd November 2007. Fragile access to HIV treatment and ... Priority for many- concealment of status- distrust response. Who or what to trust? ... – PowerPoint PPT presentation

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Title: Fragile%20access%20to%20HIV%20treatment%20and%20stigma:%20the%20experience%20of%20living%20with%20HIV%20in%20Serbia%20and%20Montenegro

Fragile access to HIV treatment and stigma the
experience of living with HIV in Serbia and
  • Sarah Bernays and Tim Rhodes
  • London School of Hygiene and Tropical Medicine.

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.

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,
  • 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,

Serbia and Montenegro
What we did
  • Qualitative research- 2005-2007
  • Baseline study-2005-2006
  • UKs department for International Development
    (DfID) funded
  • In-depth interviews
  • 40 people living with HIV (PLHIV) and 18 service
  • Prospective study- 2006-2007
  • Economic and Social Research Council (ESRC)
  • Followed up 20 PLHIV
  • 3 further interviews with each participants
    written and/ or audio diaries

Access to HIV treatment perceived as insecure
High levels of stigma
Interaction- significant consequences for
  • PLHIVs quality of life
  • HIV manageable chronic illness?
  • Participation in community action
  • Efficacy of prevention efforts

Access to HIV treatment perceived as uncertain
  • Delivery problems (high burden of financial
    costs, small market, protracted
    licensing)-gtshortages of drugs and monitoring
    tests unstructured interruptions and unmonitored
  • Anxiety caused by failings in system absorbed by
  • 2006-2007 seen improvements in the provision of
    continuous, appropriate therapy

Impact of treatment uncertainty
  • HIV treatment access and delivery continues to be
    perceived as fragile.
  • Its 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. Im
    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.

Stigma Institutional access
  • Institutional access (health care and social
  • 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 couldnt operate on him. He
    was angry. Its 2007, it happened some twenty
    days ago, when he was rejected by the doctors.
    Interview, September 2007.
  • Frequently experience poor treatment when receive
  • 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

Stigma employment and poverty
  • Restricted access to seeking, attaining and
    maintaining employment.
  • Increased poverty post diagnosis.
  • Reduced capacity to respond to treatment
  • 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 dont want me there anymore
    and so I couldnt afford treatment for myself.
    Interview April, 2006.

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 didnt react
    at all, I didnt 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 dads like well-known in town He had a lot
    of friends, a lot as dad says you didnt know
    how many people went through the house in a
    month, now he says only two or three people come
    over. The houses like died out. A lot No one
    will come, everyones afraid. Interview, August
  • Retreat and isolation
  • Loneliness kills, not AIDS. Diary, May 2007.

  • 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
  • Lack of community action (not engaged on
    treatment issues, fluid turnover of

  • Stigma shapes HIV treatment access
  • Unable to speak out
  • Risks from disclosing status
  • Energy-gt 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

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
  • Curb physiological development of HIV/AIDS
  • Counter stigma through community mobilisation and
    improving the quality of life for PLHIV- in
    Serbia and elsewhere.

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,
  • Available early 2008
  • Advocacy and training kit- including diary
  • Radio documentaries with participants.
  • Further details or