Unspoken: Sexuality, Romance, and Reproductive Freedom for Women Living with HIV in the United States, Positive Women’s Network – United States of America (PWN-USA), Nov 2013

The Positive Women’s Network – United States of America (PWN-USA) aims to achieve federal policies grounded in the reality of women’s lived experiences by applying a gender equity and human rights lens to the HIV epidemic. While most existing literature and policies concerning people with HIV take aim at public health initiatives, this study focuses on women living with HIV, and, specifically, issues concerning sexual and reproductive health rights (SRHR). PWN-USA explores existing policy, law, and literature affecting “the sexual lives of women living with HIV, their experiences with sexual and reproductive health care, reproductive justice for women living with HIV, and the romantic lives and intimate partnership experiences of women living with HIV.” Finally, PWN-USA conducts a survey of 179 women living with HIV in the United States to document the microsocial aspects of their SRHR.

Existing law and policy are only marginally helpful, as international instruments have limited enforcement capabilities beyond shadow reports to their respective bodies, and domestic instruments often leave out constituencies on the margins. This is especially so for women, many of whom suffer from “intersectional stigma,” leaving their SRHR out of the scope of effective law and policy. Findings at the academic level vary regarding subjects of self-perception, body image and self-esteem, disclosure, sexual and emotional satisfaction in relationships, reproductive health and gynecological care, contraceptive choices, and fertility desires and decisions. However, the resounding theme from PWN-USA’s literature review is that these subjects are largely ignored.

As a result, PWN-USA’s study is exploratory in nature, with question topics including HIV serostatus and care; relationships; sexual practices; sexual health practices; sexual and reproductive health services and access; and privacy, confidentiality, and disclosure. The survey’s methodology slightly limits the findings, since the participants were self-selected and found within the channels of the survey team’s personal and professional networks. Nevertheless, the exploratory function is well served, with research findings calling for more research focused on SRHR of women living with HIV, particularly young and mature populations, as well as more meaningful involvement from women living with HIV in designing future studies and the policies they inform.