This article by Anna Forbes first appeared in POZ magazine here.
“Only 27 percent said that the voices of PLHIV are adequately recognized and heard most of the time by the HIV-related organizations and leadership in their area.”
Do we really need a revival of the people living with HIV (PLHIV) self-empowerment movement that arose in the 1980s and early '90s?
According to a recent national survey, the answer is yes. The Sero Project conducted the survey because, according to director Sean Strub, "we wanted to understand better how many local and state PLHIV networks exist and what they mean to those who participate in them." The Positive Women's Network-USA, Global Network of People Living with HIV/North America, the North American affiliate of the International Community of Women with HIV and the U.S. PLHIV Caucus co-sponsored and helped promote the survey.
Sero's research identified 71 PLHIV-led independent groups scattered across 27 states; seven are chapters of national groups. These networks mobilize essential advocacy by bringing PLHIV together to enable PLHIV to select leadership of their own choosing, define their own agenda, establish priorities and speak with a collective voice. Beyond that, research has demonstrated that networks and similar social and advocacy support structures also reduce HIV-related stigma and improve quality of life and health outcomes for PLHIV.
Sero's Network Empowerment Project (NEP) is designed to support the creation and strengthening of local and state PLHIV networks by offering resources, communications platforms, skills-sharing and technical assistance.
Carrie Foote is a professor at Indiana University who has been living with HIV for more than 25 years. Assisted by her student intern, Tamarah Kilroy, Carrie led the survey design and administration process. "We got over 200 responses but narrowed our analysis down to groups where the leadership and membership is mostly (75 percent or more) PLHIV. Emotional support and recreational groups are important, but we only looked specifically at the groups engaged in advocacy that are led by PLHIV. It was great to hear what they are doing and what they need to move forward."
To read the rest of the article, go here.