People living with HIV often face stigma and discrimination. Many do not know what their rights are and how they can help to change things for the better. Stigma and discrimination continue to pose a critical barrier to achieving universal access to HIV related prevention, treatment, care and support.
Much of what we know about the stigma attached to HIV, and resulting discrimination, is anecdotal or fragmented, and does not include the perspectives of people living with HIV. In order to address this issue a research initiative for people living with HIV Stigma Index is rolled in the Tamil Nadu State of India.
The Stigma Index project in Tamil Nadu has been supported with DFID funds. IPPF Member Association Family Planning Association of India from the South Asia Region is facilitating the implementation in Tamil Nadu state in India. FPAI is committed to support the state consultant and the PLHIV networks to take this initiative forward. The duration of this project is December 2010- September 2011.
This Stigma Index aims to collect information on stigma, discrimination and the rights of people living with HIV that will help in these advocacy efforts. This project aims to collect information about the experiences of people living with HIV related to stigma, discrimination and their rights.
The information that is gathered from people living with HIV will allow to document the various experiences of people living with HIV within particular community or country regarding HIV-related stigma and discrimination. It compares the situation of people living with HIV in one country or across different countries with respect to a particular issue. It measures changes over a period of time. It also provides an evidence base for policy change and programmatic interventions.
"The redeeming feature of this project is an HIV person is being interviewed by another person living with HIV, and this does make a difference as one feel the other really and understand more about how one feels about things related to being HIV positive," says Ms. Anandi Yuvaraj who has been selected a Project Coordinator in Tamil Nadu.
The purpose of this project is to enable the effective establishment and strengthening of the support structures for the People Living with HIV Stigma Index in India. This will contribute towards the objectives of the international project – to detect the changing trends in HIV and AIDS related stigma across various countries – and the data from the India will be included in comprehensive and comparable analysis of stigma and discrimination.
The People Living with HIV Stigma Index will fill this gap in our global understanding, and build an evidence base to inform policy and practice. The index can be used as a tool to advocate for evidence based policy and practice that is grounded in the real experiences and perspectives of people living with HIV.
The People Living with HIV Stigma Index is the product of an ongoing partnership between two networks of people living with HIV (GNP+ and ICW), UNAIDS and IPPF. The index was piloted in five countries (Kenya, Lesotho, Trinidad and Tobago, India and South Africa) and developed in collaboration with activists, research experts and human rights champions around the world.
The questionnaire was piloted to test the questions themselves rather than find answers, yet some interesting results emerged. A mixture of 64 men and women aged between 20 and 52 year was interviewed in five countries during the pilot. Included in this number were some vulnerable groups such as men who have sex with men and sex workers.
Some findings include: Harassment or assault has been experienced by 64% of participants in the last 12 months, of whom 79% indicated that this was related to their HIV status.
One quarter of participants had been forced to move or change their living situation in the last 12 months—87% said this was related to their HIV status
More than a third of participants (24 people) reported losing a job (or other source of income) in the last 12 months—83% said this was related to their HIV status.
Disclosing their HIV status was an empowering experience for 75% of participants even in light of other stigma or discrimination they may have experienced.
More information and advocacy is needed about rights, laws and policies that may exist nationally and internationally to support people living with HIV. 64% had no knowledge of the relevant national law or HIV policy referred to in the questionnaire.
These findings are illustrative only, and indicate that the index can be significant for documenting the experiences of people living with HIV and sharing information about human rights and relevant legislation to support people living with HIV in the specific countries.
“The HIV Stigma Index is valuable tool in documenting the experiences of many people in a robust manner. In addition the individual stories are also illuminating of the realities of people living with HIV. Qualitative case studies and life stories can compliment the findings of the index and strengthen the research process, .says A J.Hariharan, Founder Secretary, Indian Community Welfare Organization (I.C.W.O.)
Materials to support the rollout of the index include a Questionnaire and User Guide. Both are currently available in English, Spanish and French with translation into Arabic, Russian, Chinese and Portuguese. More information about the Index and further resources are also available from www.stigmaindex.org.
Syed Ali Mujtaba is a journalist based in Chennai. He can be contacted at firstname.lastname@example.org