People Living with HIV Stigma Index

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Feature story

People Living with HIV Stigma Index

26 August 2008

The survey is the result of a partnership
between IPPF, UNAIDS, GNP+ and ICW.

Much of what we know about the stigma attached to HIV and the resulting discrimination towards people living with the virus is anecdotal or fragmented. Existing surveys show that while much is known about the influence of stigma there is no clear picture of the actual magnitude of it. Stigma and accompanying discrimination are widely recognized as significant barriers to HIV prevention, treatment and care services reaching those who need them most. Without concerted action to eliminate stigma, the goal of universal access to these vital services will be impossible to achieve.

People Living with HIV Stigma Index

To address this lack of evidence, a measurement tool The People Living with HIV Stigma Index has been developed. The survey is the result of a partnership between the International Planned Parenthood Federation (IPPF), UNAIDS, the Global Network of People Living with HIV (GNP+) and the International Community of Women living with HIV (ICW). This global initiative has also received financial support from GTZ and DfID, the German and British development bodies.

With better evidence, programmes can be better directed and improved, advocacy efforts strengthened, and policy better-informed. Importantly, the initiative puts into practice the Greater Involvement of People Living with HIV/AIDS (GIPA) principle.

“It's exciting to see how interest in the Index is gaining momentum among positive networks. People are really keen to implement it in their countries and I think this is because they recognize it has been created by and for positive people, and that it can ultimately benefit their communities,” said Kate Thomson, Chief of Civil Society Partnership Team, UNAIDS.

Strengthening capacity

Much of what we know about the stigma
attached to HIV and the resulting
discrimination towards people living with
the virus is anecdotal or fragmented.

During 2008 the important process of preparing for the roll-out of the Index commenced by strengthening the capacity of networks of people living with HIV and building in-country partnerships.

From 50 countries across Asia, the Pacific, Africa, the Caribbean, Latin and South America, 87 HIV positive people, representing 66 organizations, have been trained as trainers or team leaders. UNAIDS Regional Support Teams and UNAIDS Country Coordinators as well as regional partners of IPPF, ICW and GNP+ have been working together to implement these workshops.

“When it comes to crying, shouting and speaking out against stigma—I have done it. But I have been struggling with the evidence to quantify it. As a researcher and as an advocate I now have the missing link,” said Beatrice Were from Uganda who participated in the Africa regional workshop held in Nairobi, May 2008.

The People Living with HIV Stigma Index was showcased earlier this month during a special session at the International AIDS Conference in Mexico City by Anandi Yuvaraj from ICW, “the Index gives us a real opportunity to measure, understand and advocate effectively to improve policies and programmes and to make a real difference in the lives of people living with HIV.”

National implementation

The Index has been developed in collaboration with community leaders, activists, researchers and human rights advocates around the world and piloted in Kenya, Lesotho, Trinidad and Tobago, India and South Africa. The first full-scale national implementation of the Index is underway in the Dominican Republic and findings and initial analysis will be published towards the end of 2008.

The results coming from this process will be revealing. As Andell Simon, a researcher involved in the pilot phase held in Trinidad in 2006 said, “being interviewed by another person living with HIV does make a difference as you feel that they really understand more about how you feel about things related to being HIV positive.”

For more information visit the recently launched web site or contact the project coordinator at IPPF, Lucy Stackpool-Moore (replacing -at- with @).