Unheard Voices: Reframing the HIV/AIDS Narrative to Include Women’s Health and Comorbidities
by Megan E. Bishop
Highlighting work from the Women's Interagency HIV Study in Atlanta, Georgia under the direction of Dr. Vasiliki Michopoulos
As a biologist, I wish I could tell you that when I think of HIV, I first think of the biological mechanisms of the disease, or more optimistically, the biological mechanisms of ART (also known as antiretroviral therapy): the revolutionary treatment that prevents HIV/AIDS from being a death sentence. However, I wish my answer wasn’t that I first think of the Bohemian Rhapsody biopic, and not for lack of enjoying the film (which by the way, I did very much enjoy!), but more so because the story of HIV/AIDS extends far beyond the context in which it was presented here. When I first watched the movie at 17 (oh how time flies), I really didn’t understand what HIV/AIDS epidemic was until I watched the scene at the Live Aid concert, where Queen put on an absolutely electric performance despite nearly losing his battle with AIDS. When the credits cut to this message,
“Freddie Mercury died of AIDS-related pneumonia on the 24th of November, 1991”,
I made the conclusion that HIV/AIDS was a tragic disease that impacted men, particularly men identifying as gay. And, for now seven (woah) years, I’ve held onto that assumption - as a Neuroscience major, and as a PhD student. Little did I know that 22% of individuals living with HIV are biologically female, and 60% of newly diagnosed HIV cases in women are those of black women. While I am thankful that the biopic raised awareness for the HIV/AIDS epidemic, both for myself and for others, it left me with the belief that HIV/AIDS was a disease only gay men contracted. This isn’t shocking; in fact, the LGBTQ+ community is the focus of the discourse around HIV/AIDS. Discussion surrounding HIV/AIDS makes many false assumptions, including that HIV/AIDS is only a problem within the LGBTQ+ community. This narrative is not only harmful in that it associates LGBTQ+ individuals directly with a disease, fueling discriminatory stereotypes, but women (in the biological context of the article, I’ll be referring to women assigned female at birth) are completely left out of the story!
Because women with HIV have been left out of the societal narrative of HIV, consequently, they have been underrepresented in HIV-related research. Until recently, biological sex differences in HIV symptom progression hadn’t even been investigated! However, the expansion of the Women’s Interagency HIV Study, a longitudinal study using data from cohorts of women living with HIV, marked a huge step towards identifying key differences in how HIV impacts biological men and women. For instance, recent studies have shown that people with HIV experience a 1.4-to-2-fold increase in heart attack risk; however, this risk is especially high in women with HIV, whose risk is increased about 3-fold.
In an effort to continue investigating how HIV particularly impacts women, scientists in the Emory University Medical School and Rollins School of Public Health at Emory University facilitated a collaboration studying the relationship between prevalence of post-traumatic stress disorder (PTSD) and endothelial dysfunction, a condition that causes blood vessels to constrict when they should expand, in women with HIV undergoing ART treatment. While PTSD and endothelial dysfunction shared no significant relationship in women without HIV, the study found that PTSD symptom severity and endothelial dysfunction intensity, measured by the change in blood vessel diameter between activity and rest, were positively correlated in women with HIV. The team attributes this relationship to the potential stress caused by both receiving an HIV diagnosis and undergoing ART therapy, making assumptions that such external stressors may compound physical and mental consequences of previously experienced stressors, including past trauma. This would also explain the link to endothelial dysfunction, whose symptoms have been shown to be intensified by chronic stress.
To mitigate risk, this research team suggests the implementation of early trauma screening for women with HIV as a tool to predict increased risk for endothelial dysfunction development and thus facilitate early preventative treatment. While more work is necessary to compare how PTSD and endothelial dysfunction as comorbidities of HIV may compare to a more diverse sample of people with HIV, including men, this work makes it clear that women with HIV experience higher rates of comorbidities associated with their HIV diagnosis compared to other women, even while undergoing treatment. HIV/AIDS is often thought of as a “cured” disease, but quite distinctly, it’s a disease mitigated by treatment that, while alleviating the fatality of the disease and intensity of symptoms, is not a “cure-all”. Leaving women out of the HIV narrative ignores their comorbidities and thus, ignores their experiences. The Bohemian Rhapsody documentary did a fantastic job at helping re-spark the conversation about HIV/AIDS for a lot of us, but now, it’s up to us to keep the conversation going – one that includes all whose lives have been impacted by HIV.
