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Press Release

United States People Living With HIV Stigma Index Launches for World Aids Day

Advocates Expose U.S. Failures to Address HIV Stigma and Discrimination and Propose an Anti-Stigma Empowerment Tool Based on Community Research

November 27, 2013

New York, NY -- The United States People Living With HIV Stigma Index may well be the most ambitious community-based research project ever undertaken to measure HIV stigma and discrimination nationally, and it also has the benefit of empowering communities of people living HIV, according to a report published by the project's National Steering Committee.

"Right now, people living with HIV throughout the United States are experiencing stigma and discrimination, but they often live in silence and bear the full burden of stigma alone," said Laurel Sprague, National Coordinator of the U.S. PLHIV Stigma Index. "With World AIDS Day 2013 around the corner, we are proud that the U.S. PLHIV Stigma Index launch will cast a spotlight on the devastating effects of HIV stigma and discrimination -- the report will encourage the public to combat HIV stigma, and it will give communities of people living with HIV access to tools to measure stigma and create community-specific interventions," Sprague added.

The People Living With HIV Stigma Index project is a survey created by and for people living with HIV that has been implemented in 50 countries across the globe. Twenty-seven grassroots advocates and researchers in the HIV field convened a National Steering Committee meeting of in Washington, DC, on September 26-27, to make decisions about the United States implementation.


When the Steering Committee members met for the first time, they initiated the planning process with presentations on how HIV stigma manifests in different U.S. communities of people living with HIV, including sex workers, people who use drugs, women, young people, prisoners, people from the rural and southern United States, gay men and other men who have sex with men (MSM), transgender people, African Americans, Latino/as, and people of Asian and Pacific Island descent and Native American nations. The Steering Committee presentations established a clear need for a project to assess stigma and discrimination across many different highly affected communities in the United States.

The Steering Committee members also found that many of the negative consequences of stigma and discrimination remained the same, including barriers to healthcare, HIV testing and treatment, social isolation, employment discrimination, depression and other mental health issues, increased legal vulnerability or inappropriate prosecutions, and partner violence.

"As someone involved with the HIV response for over 30 years, I have witnessed terrific progress in the areas of HIV education, prevention, treatment, and social protections; however, stigma and discrimination against People Living With HIV (PLHIV) remains the single largest component of the HIV response where we continuously fail to reach real significant progress," said Eric Sawyer, a Civil Society Partnership Advisor at UNAIDS.

A pilot site in Detroit, Michigan will validate the existing survey instrument for the U.S. PLHIV Stigma Index, as well as the research and advocacy process for the United States. Eight additional implementation sites were selected by the Steering Committee to represent a broad range of U.S. regions and key populations, dependent on the ability to raise funds for these implementations.

Initial funding for the U.S. PLHIV Stigma Index has been provided by the Ittleson Foundation, with support by the Joint United Nations Programme on HIV/AIDS (UNAIDS), the International Center for Research on Women (ICRW), the Stigma Action Network (SAN), Housing Works, AIDS Partnership Michigan, the Center for Sexuality and Health Disparities at the University of Michigan School of Public Health, and the Global Network of People Living with HIV/AIDS (GNP+).

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This article was provided by U.S. People Living With HIV Stigma Index National Steering Committee.


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