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The next National HIV/AIDS Strategy (NHAS) must include factors vital to the survival and well-being of women living with HIV. Women continue to account for nearly a third of the estimated 1.2 million people living with HIV in the US, and rates of morbidity and mortality among women are high.[i] The next NHAS must address the unique needs of women living with HIV and must include priorities that extend beyond the HIV care continuum.
HIV mortality rates among women reflect stark racial and gender disparities. Although women with HIV are more likely to be tested and to know their HIV status than men who have sex with men (MSM), among those retained in care, women have lower antiretroviral medication use and lower rates of viral suppression.[ii] Mortality rates among women with HIV reveal that Black women have significantly higher death rates than White women (16.7 to 1).[iii] In a 2013 study, researchers determined that youth were less likely to be linked to care, retained in care, and virally suppressed,[iv] indicating that the specific clinical care and support needs of women and youth living with HIV are inadequately addressed in existing healthcare systems. Researchers have documented multiple barriers to engagement in care for women living with HIV, including lack of transportation, child care responsibilities,[v] lack of financial resources, inability to take time off work for medical appointments, and symptoms of clinical depression.[vi] Approximately 30% of women with HIV are currently living with post-traumatic stress disorder (PTSD).[vii] These factors contribute to poor health outcomes and increased likelihood of death among women living with HIV.[viii]
The HIV epidemic among women is primarily an epidemic among women of color.[ix] Further, women with HIV overwhelmingly live in poverty, and are reliant on public healthcare services.[x] A 2009 report by the National Institutes of Health found that a third of transgender women in the US are living with HIV, and the majority of transgender women diagnosed with HIV are women of color.[xi] Women with HIV occupy spaces where the impacts of racism, patriarchy, poverty, trauma, and HIV intersect; services for women must proactively address this.
In addition, the HIV epidemic among women is geographically concentrated. 10 states account for nearly 70% of all HIV cases among women.i Nine Southern states and the Northeast region shoulder a disproportionate burden of the HIV epidemic among women, with New York and Florida alone accounting for nearly 70,000 women and girls living with HIV.[xii]
Expanding services that effectively link and retain women living with HIV in care and ensuring the offer of antiretroviral therapy are critical. However, viral suppression cannot serve as a proxy for optimal health outcomes for women living with HIV. Women with HIV also experience disproportionate intimate partner violence and trauma, and hold significant responsibility in caring for other family members. These multiple burdens are exacerbated by the effects of racism, sexism, and poverty. Further, as HIV has become a chronic, manageable condition, and as the population of women with HIV has aged, needs have expanded beyond medical care to include quality of life issues, such as mental health and employment-related services. For women, addressing HIV in 2015 demands a multi-pronged response, one that accounts for the various interconnected factors shaping their lives and looks towards securing health, dignity, and long-term well-being.
As a national membership body of women living with HIV, Positive Women’s Network-USA recommends the following 5 priority actions for the Office of National AIDS Policy (ONAP) in developing the next National HIV/AIDS Strategy:
- Meaningfully Involve Networks of People Living with HIV
Recommendation: ONAP should consider networks of people living with HIV (PLHIV) as key consultative partners – particularly the US People Living with HIV Caucus, the largest and most representative national coalition of people with HIV – in all issues pertaining to the PLHIV community. PLHIV networks are accountable to the constituencies they represent, are in regular contact with people with HIV throughout the country, and can bring significant expertise, experience and accountable representation to bear on planning and decision-making processes pertaining to policies and programs that impact our lives.
- Expand Gender-Responsive HIV Services to Holistically Address Women’s Needs and Improve Health Outcomes of Women with HIV
Recommendation 1: Develop a minimum standard of care for women with HIV who receive healthcare from any payer source. Such a standard should be adopted by the Centers for Medicare and Medicaid Services (CMS) as well as by the Ryan White Program. The following components should be included:
- Culturally relevant care that affirms the sexual and reproductive healthcare needs of women with HIV at all life stages and of all gender identities, including transgender women.
- High-quality clinical care – including affordable, accessible medication and insurance payment in areas where Medicaid has not been expanded under the ACA.
- Trauma-informed care practices, including screening and intervention for lifetime abuse and intimate partner violence, in HIV clinical and community-based settings.
- Services that facilitate women’s access to care as needed, including: childcare, transportation, substance use and mental health services, and housing.
Recommendation 2: Define and implement a standard of gender-responsive care for people with HIV that includes the above sets of services. Prioritize funding for models that meet this standard within the Ryan White Program.
- Expand Access to Care and Improve Quality of Care for Black Women Living with HIV
Recommendation 1: ONAP should develop an initiative focused on improving quality of care and access to care for Black women living with HIV, with a focus on the geographic regions where Black women are most impacted.
Recommendation 2: ONAP should mandate anti-racism training for providers, clinicians, public health departments, and AIDS service organizations in geographic locations where at least 30% of people living with HIV are people of color.
- Increase Access to Culturally Relevant Prevention and Care for Transgender Women
Recommendation 1: All CDC- and HRSA-funded sites should adopt the two-step question: what was your assigned sex at birth and what gender do you identify as now?
Recommendation 2: ONAP must monitor ACA implementation to ensure fully inclusive and comprehensive healthcare delivery that addresses the needs of transgender women living with HIV, with a particular emphasis on transgender women of color.
- HIV Prevention Methods Must Prioritize Women and Be Responsive to Their Unique Needs
Recommendation: Prioritize the research, development and dissemination of HIV prevention methods that can be controlled by women.
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[ii] Dombrowski, Julia C. et al. High Levels of Antiretroviral Use and Viral Suppression among Persons in HIV Care in the United States, 2010. Journal of acquired immune deficiency syndromes (1999) 63.3 (2013): 299–306. PMC. Web. 6 Apr. 2015.
[iv] Hall H, Frazier EL, Rhodes P, et al. Differences in Human Immunodeficiency Virus Care and Treatment Among Subpopulations in the United States. JAMA Intern Med. 2013;173(14):1337-1344.
[v] Stein MD, Crystal S, Cunningham WE, et al. Delays in seeking HIV care due to competing caregiver responsibilities. Am J Public Health 2000;90:1138-40.
[vi] Cook JA, Cohen MH, Burke J, et al. Effects of depressive symptoms and mental health quality of life on use of highly active antiretroviral therapy among HIV-seropositive women. J Acquir Immune Defic Syndr 2002;30:401-9.
[vii] Machtinger, E. L., T. C. Wilson, J. E. Haberer, and D. S. Weiss. “Psychological trauma and PTSD in HIV-positive women: a meta-analysis.” AIDS and Behavior 16, no. 8 (2012): 2091-2100.
[viii]Ickovics JR, Hamburger ME, Vlahov D, et al. Mortality, CD4 cell count decline, and depressive symptoms among HIV-seropositive women: longitudinal analysis from the HIV Epidemiology Research Study. JAMA 2001;285:1466-74.
[x] Women’s Interagency HIV Study: https://statepiaps.jhsph.edu/wihs/invest-info/dossier.pdf, and The HIV Cost and Services Utilization Study: http://www.rand.org/pubs/research_briefs/RB4523/index1.html.
[xii] Reif, Susan, et al. HIV Diagnoses, Prevalence, and Outcomes in Nine Southern States, J. Community Health, Dec. 2014, https://southernaids.files.wordpress.com/2015/01/hiv-diagnoses-prevalence-and-outcomes-in-nine-southern-states-final.pdf