'Ending the HIV epidemic': where are African American women in the plan?

Compared with the beginning of the HIV epidemic in the 1980s, HIV is largely viewed as a chronic life-limiting, rather than fatal illness [1]. National statistics show an 8% reduction in new HIV infections between 2010 and 2015, and the age-adjusted AIDS mortality rate has also declined over 80% since its peak around 1995 [2]. However, these advancements mainly benefit White, cisgender populations, excluding African American women from the big picture in the fight against HIV. Women of color are a community that experiences inequitable marginalization, which is associated with greater HIV incidence, lower HIV viral suppression, and social stigma. These inequities inform the 2019 ‘Ending the HIV Epidemic’ Plan set forth by the Department of Health and Human Services, which calls for expanded testing, linkage to care, and engagement in care for key groups, such as women of color [3]. Although predominantly an urban issue, HIV infections are increasing in rural areas as well, especially in the United States South [4,5]. We know that HIV prevalence in rural communities is higher than reported as data are collected based on where patients receive care vs. where they live [6]. Ending the Epidemic investments are urgent and timely – but in order to most effectively implement these investments, we must ask ourselves: what does ‘ending the epidemic’ mean for those living with HIV? It must mean optimizing HIV treatment and health outcomes by renewing focus on the communities most in need, addressing issues beyond HIV itself and doing so in a way, which fosters resilience. Renewed focus on those in need Beginning around 2010, domestic and global treatment protocols have focused on the importance of HIV treatment as prevention (TasP) [2] and universal ‘test and treat’ approaches [3]. Research and media campaigns have disseminated the ‘Undetectable equals Untransmittable (U = U)’ message [2] with TasP as its cornerstone [2,3]. However, the ‘paradigm shift’ of TasP promotes biomedical interventions with little grounding in the sociopolitical, institutional, and cultural process, which marginalize and mistreat those with greatest likelihood of both HIV infection and poor long-term outcomes [7]. Turning the tide is equally grounded in improving access to preventive care for those at risk as it is in promoting quality of care for those already diagnosed. It also requires an understanding of the holistic impact of living with HIV from the vantage point of those most affected, which includes African American women, particularly those living in the United States Deep South, which also has more rural areas [8–10]. Heterosexual, cisgender African American women bear the greatest HIV burden of the HIV epidemic in the United States, following MSM and individuals of transgender experience [5,6]. African American women are over-represented, with the highest percentage of new HIV diagnoses in the Deep South [8–10]. Furthermore, disproportionate risk of HIV among African American women residing in the Deep South collides with worsening access to healthcare and limited health literacy [11,12], economic underdevelopment [13,14], and insufficient social support infrastructure [15,16]. Thus, intervention in this region and demographic, particularly in rural areas, is a critical key to ending the epidemic [5]. Yet, for all we know about barriers to HIV care, such as intersectional stigma of race, gender, place, and HIV, biomedical research is still largely conducted on male populations [17,18]. In regards to HIV prevention efforts, the consistent under-representation of cis-gender women in clinical trials on HIV preexposure prophylaxis (PrEP) led to the 2019 Sign-On Letter About the Inclusion of Women in the Ending the HIV Epidemic: A Plan for America (The letter for including women in the Ending the HIV Epidemic plan can be found here: https://www.thewellproject.org/news-press/sign-letter-about-inclusion-women-ending-hiv-epidemic-plan-america-ehe) [17]. This means that even among African American women who have access to care, their range of options is inherently limited as compared with men despite their exorbitantly high risk for HIV and need for diversified PrEP options [17,18]. In addition to PrEP, the WHO guidelines for HIV prevention, diagnosis, treatment, and care for key populations, and current NIH funding priorities also emphasize the need for interventions to manage HIV co-infections [17,18]. However, among the rapidly growing population of older adults aged 50 years and higher, HIV associated non-AIDS comorbidities have a greater impact on antiretroviral therapy (ART) adherence, HIV care engagement, function, and quality of life than HIV co-infections. Although individuals with HIV are living full lives, they do so with much higher rates of mental illness, pain conditions, obesity, cognitive impairments, and social isolation than individuals without HIV [19,20]. Among older adults living with HIV, African American women have the highest rates of these comorbid conditions, and HIV complications including faster progression to AIDS [17]. African American women with HIV living in the rural South are navigating health declines and challenges due to their complex medical and social support needs. Such services may include emotional support for living with HIV and instrumental support, such as assistance with HIV treatment regimens or medical appointments. Due to intersectional stigma, and institutional racism, African American women are often living with comorbid depression and other behavioral health issues, which go underdiagnosed and undertreated [18]. Historically, African American women living with HIV also have benefitted less from reproductive health promotion interventions and sexually transmitted infection prevention, resulting in higher rates of both perinatal HIV transmission and sexually transmitted infections compared with other races [19]. In particular, women living in the rural communities of the Deep South face these health challenges in a desert of both emotional and instrumental support services. Our recent work with African American men and women living with HIV demonstrates the importance of looking at broader ways to promote quality of life and positive health outcomes for those living with HIV [20–22]. We found that stigma related to HIV diagnosis, and the challenging nature of social interactions was associated with lower likelihood of viral suppression, and subsequent reduced benefits from Treatment as Prevention (TasP) approaches [21]. Although both men and women experienced some stigma related to living with HIV, women experienced more stigma, perpetrated more stigma, and were over-represented among those who were less adherent to their medications [21]. This is a story whose plot we have seen multiple times before, as well, which bears reminder on the need for new ways to change the ending [20–22]. Fostering resilience in addressing issues beyond HIV As African American women in the United States continue to experience inequities in HIV across the lifespan, we are called to consider new and innovative ways of conceptualizing protective factors in this population. Assuming a lens of resilience, we realize that African American women, irrespective of HIV status, are often caregivers in their families and are more likely than other groups to provide care rather than receive it and to be caring for children and grandchildren until late in life [23,24]. Further, they may also be experiencing greater levels of intersectional and HIV-related stigma than men with less availability to access resources to overcome these issues no matter their age at initial diagnosis. Social capital, or social support in the form of social network members, is often presumed to be a protective factor against issues, such as racism or HIV stigma in healthcare settings; our research shows, however, this is not always a given [24]. Social capital has been on a steady decline due to factors such as the COVID-19 inequities in the Southern US, which exacerbate the social isolation African American women living with HIV in this region are experiencing [25]. Presence of people that may help with care does not necessarily translate to willingness to call on those people in times of need, or ability to communicate one's healthcare challenges [24–27]. Therefore, future research and clinical programs cannot assume these supports are in place. In fact, in many circumstances, skill-building in methods of communication for African American women and their social networks is a critical strategy to ensure effective implementation of programs to promote positive health outcomes [17]. Additionally, intersectionality and HIV stigma are concepts which have received renewed emphasis in HIV prevention research. What must accompany this is renewed focus on addressing the individual-level, interpersonal-level, and community-level power systems and structures that have failed these women. While a lens of resilience is important, the solutions to ending the epidemic cannot be dependent on the individual who is experiencing the inequities in the first place [26–28]. Although we have made major advances in issues of medication adherence and subsequent viral nonsuppression, we still fail to address factors that impact HIV care engagement, such as food insecurity, stable affordable housing, and local access to care. For example, advancements in biomedical management of HIV are shifting from daily oral medication to offer alternative options, such as long-acting injectable antiretrovirals [26–29] for patients who struggle with adherence or daily pill burden. In contrast, historical and current racism in healthcare continues to fuel ongoing medical mistrust and result in disparate healthcare outcomes. Thus, it remains imperative to intervene on not only social determinants of health but also the larger context of the care environment with intersectionality and intentionality. In summary, HIV treatment for African American women across the lifespan cannot be overlooked as public health priorities move towards a view that HIV is ‘handled’. It is not a given that access to care translates to quality of care and positive health outcomes. It is incumbent upon public health as a field to cultivate structural changes that foster multi-level resilience in African American women's communities to help them successfully transform HIV from a life-limiting condition to manageable condition without detriment to their quality of life or longevity. Understanding microdynamics of support seeking in women is key to cultivating supportive social capital [30,31]. African American women engaged in HIV care and on antiretroviral therapy experience more complications than other groups such as weight gain, fat redistribution, high cholesterol, and diabetes [32,33]. Researchers and practitioners should consider more holistic approaches to promote HIV viral suppression including focused recruitment of African American women in clinical trials, use of wellness programs that include lifestyle interventions, and learning from African American women advocate voices that have been champions for decades. These are very real barriers to adherence beyond simple noncompliance, and neither HIV nor treatment adherence are the only issues these women face. Cumulative disadvantage does not exist in a vacuum, and biomedical interventions must not either. We must also remember that older adults ages 50 years and higher are a large proportion of the United States population and are the real face of the HIV epidemic [17,18]. For older adults of color, HIV continues to decimate their communities as many treatment and prevention benefits have excluded them [19–29]. We must take a holistic look at the picture by addressing the structural, systemic, interpersonal and individual. We have great opportunity to rethink the way who defines both the ‘problems’ and the ‘solutions’ to benefit African American women living with HIV. This is a requisite for us to uphold any of the goals of ‘ending the epidemic’. Acknowledgements Conflicts of interest There are no conflicts of interest.