October 16, 2023
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The National Institutes of Health (NIH) Office of AIDS Research (OAR) and Office of Research on Women's Health (ORWH) launched a joint HIV and Women Signature Program in 2023 to advance the NIH vision for women's health – a world in which every woman, including cisgender, transgender, and gender-diverse women, receives evidence-based care, prevention, and treatment tailored to their unique needs, circumstances, and goals. The program also supports women in science careers to reach their full professional potential. An intersectional, equity-informed, data-driven approach to research on HIV and women is the cornerstone of this collaboration.
To ensure accountability to the communities we serve, the NIH ORWH and OAR seek comments and input from people with lived experience related to HIV and women, the advocacy and research communities, as well as others with an interest in research on HIV and women. The purpose of this RFI is to (1) identify gaps and priorities at the intersection of HIV and women’s health and (2) inform future programs and efforts.
Background
In 2021, 54% of all people living with HIV (PWH) were women and girls and approximately 4,900 young women aged 15-24 years are estimated to acquire HIV on a weekly basis[1]. Adolescent girls and young women (AGYW) aged 15-19 years Sub Saharan Africa were twice as likely as their male peers to be living with HIV, and AGYW accounted for 6 in 7 new HIV infections. Structural factors that make women particularly vulnerable to HIV include exclusion from economic opportunities, lack of access to secondary school, and gender-based violence. Women and girls that experience physical or sexual intimate partner violence are 1.5 times more likely to acquire HIV.
In 2020, over 250,000 women in the United States and dependent areas were living with HIV and more than 5,000 women newly acquired HIV[2]. Among women with HIV, 76% received some HIV care, 58% were retained in care, and 65% were virally suppressed. Black and African American women in the U.S. accounted for 54% of new diagnoses among females despite only comprising 13% of the female population. Preexposure prophylaxis (PrEP) use by women remains low, and HIV testing rates were also low among women with sexual behaviors that increase their risk of acquiring HIV (e.g., sex work and reported anal sex)[3]. Racism, discrimination, and HIV stigma are known barriers to women accessing PrEP. Women at risk of acquiring HIV are unlikely to self-identify or be identified by their health care providers. Transgender women often have limited engagement with health care services, further limiting equitable access to PrEP.
Worldwide, HIV prevalence among transgender women is 20%[4], with a 14-fold greater risk of acquiring HIV than adult cisgender women2. Transgender people are understudied in HIV prevention and treatment interventions, and face numerous prevention challenges, including stigma and bias, lack of provider knowledge regarding transgender health and needs, and social and structural determinants of health (e.g., housing insecurity, economic instability)[5]. Importantly, transgender and gender-diverse women, as well as transgender men, experience issues and concerns that intersect with both women’s health and HIV. These include integration of trauma-informed, gender-affirming care and HIV prevention/treatment services, gender-based and intimate partner violence, and considerations from across the life course such as exogenous hormone exposures, pregnancy, lactation, postpartum care, and menopause.
Women living with HIV are aging, and aging women remain at risk for HIV. Approximately 54% of women living with HIV in the US are over the age of 50 and CDC analyses reports that acquisition of HIV is on the rise among women 55 years and older3. This highlights a fundamental gap in understanding about HIV prevention in the aging population and the need for considerations across the lifespan, including menopause.
As HIV affects girls and women differently across the life course, the HIV research agenda for women should be tailored appropriately, yet women’s health has been underexplored across the HIV research continuum – from basic through clinical and implementation science research. Further research is critical to understanding optimal ways to prevent, treat, and cure HIV and associated comorbidities across women’s lifespans. Prioritizing the inclusion of diverse populations of women in prevention, treatment, and cure-related research efforts is an essential component of ending the HIV epidemic.
Request for Information
To identify gaps and opportunities at the intersection of HIV and women’s health, and to inform future programmatic efforts, this Request for Information (RFI) invites women with lived experience, the advocacy and research communities, the general public, as well as others with interest in research on HIV and women to provide comments and input on (1) research gaps and high priority topics related to HIV and women; (2) opportunities to support women in HIV research careers; and (3) real-life experiences (direct or indirect) related to women’s health and HIV.
Responses are welcome from individuals and organizations and should be submitted via the RFI webform. To ensure consideration, responses must be submitted by December 31, 2023 at 11:59:59 PM ET
[1] https://www.unaids.org/sites/default/files/media_asset/UNAIDS_FactSheet_en.pdf
[2] Centers for Disease Control and Prevention. HIV Surveillance Report, 2020; vol. 33. http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html. Published May 2022.
[3] Hodges-Mameletzis et. al. Pre-Exposure Prophylaxis for HIV Prevention in Women: Current Status and Future Directions. Drugs. 2019 Aug;79(12):1263-1276.
[4] Stutterheim SE et. al. The worldwide burden of HIV in transgender individuals: An updated systematic review and meta-analysis. PLoS One. 2021 Dec 1;16(12):e0260063
[5] Taylor NK, Young MR, Williams VD, et al. Assessing Knowledge of HIV Vaccines and Biomedical Prevention Methods Among Transgender Women in the New York City Tri-State Area. Transgend Health. Jun 1 2020;5(2):116-121. doi:10.1089/trgh.2019.0049
Elizabeth Anne Barr, Ph.D.
Office of Research on Women's Health
Telephone: 301-402-7895
Email: Elizabeth.Barr@nih.gov
and Human Services (HHS)
