01 Dec 2019

People Living with HIV at the Center: Leading, engaging, initiating

This World AIDS Day, themed Communities make the difference, the Global Network of People Living with HIV (GNP+) highlights the central role that individuals and networks of people living with HIV play in the HIV response.

People living with HIV, as well as key population networks, have been at the center of holding decision-makers to account, providing services and making programmatic, policy and funding decisions that affect our lives. This World AIDS Day we highlight the Greater Involvement of People Living HIV (GIPA) principle in leading in the HIV response.

A key example of GIPA and people living with HIV at the center is the PLHIV Stigma Index, where people living with HIV are both the interviewers and the respondents. People living with HIV lead on all the data collection, analysis, dissemination of data and using the data for lobbying, policy reforms, health services delivery improvements, knowledge generation and creation of comprehensive knowledge about the human rights of people living with HIV.

The second Uganda PLHIV Stigma Index was launched this week by the National Forum of People living with HIV/AIDS Networks in Uganda (NAFOPHANU) with support from the Embassy of Ireland through the Prevention of HIV & AIDS in Communities of Karamoja (PACK) Project. The survey included 1398 people living with HIV in 9 regions of Uganda covering 21 districts.

The 2019 Uganda PLHIV Stigma Index highlighted issues of disclosure, experiences of external forms HIV stigma, such as exclusion from social gatherings, physical and verbal harassment or being gossiped about, and experiences of self-stigma.

The PLHIV Stigma Index tool was developed by GNP+, UNAIDS, the International Community of Women Living with HIV and  International Planned Parenthood Federation (IPPF) in 2008  and updated in 2017. In Uganda, the first national PLHIV Stigma Index survey was conducted in 2013, during the early days of the national antiretroviral treatment program. The updated PLHIV Stigma Index – the PLHIV Stigma Index 2.0 – was tested in Cameroon, Senegal and Uganda in 2017 and has been available from GNP+ since the end of 2017.

“The Stigma Index puts us in the centre and allow us to point out what has been working and what must be improve. With the fast-changing global health landscape, it is imperative to have a way to voice out our needs and priority beyond bio-medical interventions,” says Omar Syarif, the GNP+ Programmes Manager leading on this work.

“People Living with HIV are the experts in combatting stigma and discrimination, facing it every day in their lives.  The Stigma Index is a living advocacy tool that is used as a foundation for further advocacy and human rights  defense work towards an equal  and just world for all PLHIV,” says Alexandra Volgina, GNP+ Programmes Manager.

This is one of thousands of examples of people living with HIV at the center of the HIV response. GNP+ calls for investment in networks of people living with HIV and in the critical work networks do in mobilising their constituents to speak up about the issues that affect them and to develop and implement solutions together. GNP+ calls for the inclusion of people living with HIV in decision-making spaces as we work collectively to end AIDS and to ensure good quality of life for people living with HIV and the communities around us.

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