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1. PEOPLE LIVING
WITH HIV
ARE...
Challenges in moving from data to action when the
evidence is ignored; the story of the People Living with
HIV Stigma Index in Belarus.
GLOBAL NETWORK OF
PEOPLE LIVING WITH HIV
The People Living with HIV Stigma Index is an initiative of four founding partners
In 2009/10 18 trained PLHIV researchers surveyed 370 PLHIV residing in all regions of Belarus using a tool and process
developed by GNP+, ICW, IPPF, and UNAIDS; the PLHIV Stigma Index (www.stigmaindex.org). The initial findings
allowed us to develop strategies to put in to place a course of advocacy actions and develop relationships through the
establishment of the partnership with other civil society players, government and health institutions. The program
interventions suggested were to:
• raise awareness on awareness on human rights issues;
• assist PLHIV to assert their rights;
• unite into stronger coalitions and alliances;
• inform programmatic decisions on quality of services to PLHIV;
• ensurethedevelopmentofeffectivemeasuresaimedatovercomingstigmaanddiscriminationagainstPLHIV.
We expected government departments, the medical institutions - all involved in the partnership to gather the data -
to work with us to disseminate the data widely, to continue to work with us as we moved into an advocacy phase. We
expectedinstitutionstoindependentlylookattheservicesprovided,thefindings,theconclusionslookattheadequacy
of the service provided and what could be dome by them to change some of the blatant breaches of confidentiality,
provision of sub standard services, and less than adequate provision of diagnostics and treatment access.
We were wrong to expect any action. As of beginning of 2012 through our network of PLHIV contacts we have seen
no changes in the way services are delivered, none of the original partners in the research have followed up on their
early promises. We feel advocacy work for the benefit of PLHIV is not prioritized by the government. International
agencies with an in-country presence also face constraints and pressures from the government making it sometimes
difficult for them to adequately support civil society effectively especially when the findings of research are not what
the government wants to hear.
The Belarusian PLHIV movement had to stand alone to confront all the challenges brought by stigma, with no political
and financial support.
The messenger of bad news often gets shot. In the Belarus context the PLHIV community has not been supported to
follow up on this work within the country - and has had to look internationally for funding to do the necessary follow
up work to articulate community concerns. Advocacy initiatives are hard to develop in such conditions, often meeting
persecution and punishment. Special measures need to be taken by the international community to support civic
initiatives on overcoming stigma and social unjustice in difficult political context in order to be able to move further.
We applaud the support of GNP+ and HIV in Europe who have been able to come to our aid – even with limited
resources – so we can carry this work forward and feel ‘we are not alone’.
E. Grigoryeva, J.Hows
Belarusian People Living with HIV Community, advocacy dpt., Minsk, Belarus
Global Network of People living with HIV Amsterdam, Netherlands
Background
Methods
Results
Conclusions
Institutions
Authors
THE PEOPLE
LIVING
WITH HIV
STIGMA
INDEX
leading research