Understanding the Promise: Considering the Experiences of Women Living with HIV to Maximize Effectiveness of HIV Prevention Technologies



      The United States' response to HIV was designed primarily to meet the needs of single men without dependent children and its prevention strategies focused primarily on individual behavior change with little attention to the social, cultural, and economic factors fueling HIV risk, especially among indigent and marginalized women. In 2012, the President's Advisory Council called for an updating of the National HIV/AIDS Strategy's Implementation Plan to “achieve specific, targeted and measurable goals for reducing HIV incidence and … improving health care access and health outcomes for women living with HIV.”

      Outcome Measures

      Women living with HIV and those at greatest risk of HIV generally live side by side in the same communities and under the same conditions, separated in status only by a positive HIV test and its consequences. Thus, women openly living with HIV constitute an identifiable and accessible source of first-hand information regarding the barriers that keep women out of HIV prevention and care. Their insights, rooted in lived experience, can vitally inform the development of realistic HIV prevention goals and strategies for the successful integration of HIV prevention into the services already accessed by high-risk women. Their expertise, however, is largely untapped.


      In this article, women living with HIV summarize the substantial deficits that exist with regard to woman-focused HIV prevention efforts nationally and the policy and practice changes needed to reduce the domestic impact of the HIV epidemic on women and girls. They also outline opportunities for movement in this direction as implementation of the National HIV/AIDS Strategy proceeds.
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      Anna Forbes, MSS, has been working in HIV/AIDS since 1985 and now consults with domestic and international clients on HIV policy. Published in academic journals, popular press, and online, she won the 2012 global Omololu Falobi Award for Excellence in HIV Prevention Research Community Advocacy.


      Naina Khanna, BS, coordinates the Positive Women's Network–USA and serves on President Obama's Advisory Council on HIV/AIDS. A familiar name in advocacy circles, she received the Ms. Foundation Women of Vision Award in 2009 and NAPWA's Leadership Award in 2010.


      Sonia Rastogi, MPH, is PWN-USA's Advocacy Coordinator and serves on the board of the Global Network of People Living with HIV–North America region. An MPH student at Columbia, her work focuses on forced migration, human rights documentation, and investigative epidemiological methods.


      Barb Cardell, BA, lives openly with HIV, and is an educator, advocate, and member of PWN-USA's steering committee. She co-chairs Colorado's Coalition for HIV Prevention and Education and her 2012 statewide anti-stigma campaign earned her the Boulder County AIDS Project Local Legend Award.


      Kat Griffith, MSW, is serving as PWN-USA's Policy Co-Chair and on the board of her local Minority AIDS Awareness Council. She co-created the National Network to End Domestic Violence' professional cross-training curriculum on interpersonal violence and HIV/AIDS.


      Waheedah Shabazz-El, AA, is an African-American Muslim woman living with HIV. She delivered a Plenary address on behalf of PWN-USA at the 2010 International AIDS Conference. A member of the HIV national Prevention Justice Alliance Steering Committee, she also works with Philadelphia FIGHT.