Aging with HIV: Working to Ensure Equity and Inclusion

Due to effective anti-retroviral therapy (ART), the HIV population is growing older, and this phenomenon is observed globally wherever ART is readily available [1]. In high-income countries, people aged 50 years and older (hereafter referred to as older adults with HIV) make up the majority of those living with HIV. The aging of the HIV population is also occurring in low- and middle-income countries [2, 3]. In 2016, there were an estimated 5.7 million older adults with HIV [range = 4.7 to 6.6 million], representing 16% of the population with HIV worldwide [4]. In line with these projections, the modal age of people with HIV increased globally from 25–30 years to 35–40 years between 1990 and 2019 [5]. The aging of the HIV population is also due to new infections; in 2018, 17% of new HIV infections in the USA were in adults aged 50 years and older [6].

Clinical care for older adults with HIV is complicated by their experiencing multimorbidity at younger ages compared to noninfected peers due to immune system changes and chronic inflammation (inflammaging), as well as polypharmacy resulting from treatment for these conditions [7‒9]. Mental health conditions and substance use interfere with adherence to and effectiveness of ART [10, 11]. Older people with HIV experience more behavioral health problems than HIV-negative peers, but the association of age with these conditions among those with HIV is equivocal [12, 13]. Given these challenges, social care resources for this population remain inadequate due to pervasive social isolation, insufficient social support, and a service delivery system that is unprepared to meet their needs [14, 15]. Thus, understanding the issues of health care equity, social equity, and inclusion related to HIV and aging are critical to developing effective programs and policies.

With the emergence of HIV primarily among gay and bisexual men in the 1980s, health care for people with HIV has been historically tied to people who are sexual and gender minorities. Minority stress theory is applicable to older adults with HIV regardless of sexual orientation or gender identity and posits that health inequalities result from persistent stress associated with stigma and discrimination [16]. The intersection of multiple discredited identities (e.g., race/ethnicity, socioeconomic position) also affects access to health care and health equity for older people with HIV [17]. For example, non-Hispanic black and Latinx individuals are disproportionately impacted by HIV in the USA, yet they experience lower levels of care engagement, significant barriers to health care access (e.g., lack of health insurance), and poorer health outcomes (e.g., higher rates of viremia) compared to non-Hispanic whites [18‒20]. These disparities reflect geographic disparities in access to HIV treatment and care in the USA, with poorer access in the southern states and rural areas that have the highest incidence of HIV infection and mortality and where non-Hispanic blacks constitute a greater share of the population [21, 22]. These geographic disparities are related to health care access (lack of insurance) and limited availability of prevention services such as pre-exposure prophylaxis [21].

Ageism, namely, discrimination and stereotyping directed at people as they age, has a profound impact on prevention, treatment, and care related to HIV [15]. The United Nations Program on HIV/AIDS (UNAIDS) 95-95-95 strategy envisions 95% of people with HIV knowing their status, 95% of diagnosed people with HIV being on ART, and 95% of those on ART, achieving undetectable viral loads [23]. To advance these goals, much of the focus has been on younger people (e.g., teaching safe sexual practices, routine HIV testing) [24]. The older population with or at risk for HIV is often left out of these initiatives [25]. In part, this situation stems from the idea that older people do not have sex – the primary mode of HIV transmission – and are therefore not at risk for HIV [26]. Providers rarely discuss sexual health with older patients [27]. Thus, older adults may not be aware that sexual activity puts them at risk for HIV and other STIs [12]. Because older adults are not perceived as being at risk for HIV and are tested infrequently, they tend to be diagnosed later and are more likely to receive a dual diagnosis of HIV and AIDS than their younger counterparts, with negative implications for their long-term health outcomes [28].

The debate continues about whether HIV accelerates (leads to disease incidence at earlier ages) or accentuates aging (multimorbidity at earlier ages, but not younger age at disease onset per se) [29]. Regardless, treating HIV along with other age-related chronic conditions, such as cardiovascular and metabolic conditions, requires a health care system equipped to meet the complex health needs of this population [8, 30].

Geriatric care is one way to address the complex health needs of older people with HIV. However, given the shortage of geriatricians, a more feasible approach may be the infusion of geriatric care principles into HIV and primary care settings. Geriatric care models use an integrated approach that includes assessments of all health domains and the development of comprehensive care plans. Integrated geriatric care models could be particularly beneficial given their utilization of care coordination to address complex comorbid health problems that characterize the aging HIV population [8, 31]. Further, the comprehensive assessments that are incorporated into these models address not only health problems, but other patient goals and concerns such as community supports, functional ability, finances, and retirement [31]. Care of the older adult with HIV must also encompass adherence to ART, including identifying factors associated with suboptimal adherence to ART, such as depression [32, 33].

Psychosocial burdens are another component of aging with HIV and include inter-related factors such as depression, post-traumatic stress disorder, social isolation, and HIV stigma [34, 35]. Stigma, characterized by a “spoiled” identity [36], has been experienced by people living with HIV since the start of the epidemic. Stigma may be manifested as both enacted (overt instances of discrimination/mistreatment) and felt (experienced by the individual) [37]. HIV stigma is rooted in moral judgments on behaviors and identities associated with transmission, such as sex (same-sex relationships, sex work) or intravenous drug use, coupled with HIV being an infectious disease [12, 38]. The intersectionality of stigma must also be considered. Those with multiple discredited identities will have a more layered experience of aging with HIV [38]. Older adults with HIV often experience dual stigmatization because of their HIV serostatus and age [37]. HIV stigma is also experienced within communities that have been disproportionately impacted by this pandemic, such as gay and bisexual men. Gay and bisexual men with HIV report feelings of ostracism and social exclusion within these spaces that are related to poorer emotional functioning and psychological distress [39, 40].

Older adults with HIV may experience anticipated stigma, which at times is unconscious but acts as a defense mechanism. This can trigger behaviors such as self-protective withdrawal, self-isolation, and nondisclosure of one’s serostatus [37]. Nondisclosure is often rooted in the fear of consequences such as job loss, rejection, physical violence, and even death [38]. HIV stigma can result in the reluctance to be tested and treated for HIV and represents an obstacle to strategies to end the epidemic such as the UNAIDS 95-95-95 approach [23, 39].

Some older adults with HIV experience “survivor conflict,” namely, feeling happy or grateful to have survived but also struggling with feelings of loss around opportunities, plans, or relationships that changed because of HIV [41]. In one study, six women who were interviewed used the phrase, “I’m still here.” These women explained that the uncertainty of aging with HIV is a daily burden; it is not something that you survive, it is something you live with every day [41]. However, these women highlighted the importance of meaningful community connections with others aging with HIV, fostering feelings of safety and support, and helping them to overcome stigma and reclaim their personal identities and a sense of visibility [41].

Older adults with HIV having higher social support and greater social integration report lower HIV-related stigma, better psychological well-being, better physical functioning, and greater sufficiency of informal social support resources [14, 42]. Community connections can specifically address some of the psychosocial challenges of aging. Among older gay and bisexual men with or at risk for HIV, psychological and emotional connections to the gay community buffer against internalized ageist attitudes and negative body image, as well as promote fitness ideals and physical activity [43]. For older people with HIV who are more geographically isolated such as those in rural areas, virtual communities are an alternative, although the question of meaningful internet access should be addressed [44]. In one study of people living with HIV that included older adults, 76% used an online social networking site at least weekly [45]. The COVID-19 pandemic has also led to greater virtual community interactions regardless of geographic location, which may help those who have difficulty attending in-person events due to mobility or transportation difficulties [46].

There are mechanisms for improving social equity and inclusion for older people with HIV that originate at the community level and include community-based participatory research (CBPR) models and community organization and mobilization efforts. The genesis of CBPR for people with HIV can be traced to the “Denver Principles” articulated by a forum of people living with AIDS in 1983 who sought to reclaim their power and reject characterizations of victimhood and dependence. Two of the principles are especially germane to CBPR: be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations and be included in all AIDS forums with equal credibility as other participants, to share your own experiences and knowledge [47]. Meaningful CBPR can only develop when interaction is fostered, and community partners are able to exert influence and control over the research process [48]. These relationships involve the development of trust between the community and researchers based on reciprocal exchange of information and resources to maintain equality [49].

The Denver Principles were instrumental in giving a voice to people with HIV in research settings, for example, through the formation of Community Advisory Boards for research studies and have promoted health equity by empowering community members [50]. One example of CBPR is “Sistah Powah!” – an intervention led in Boston by a community of black women at risk for and living with HIV [51]. This project used a structured writing method to give these women a voice and allow them to safely disclose and process the experience of stigma and articulate the challenges they encountered as aging black women with HIV. However, despite the wide application of the CBPR principles in HIV/AIDS research, areas for improvement remain, such as building community trust to overcome years of unethical and discriminatory research practices and reducing power differentials between researchers and community members [47, 52].

There have been several initiatives led by grassroots and advocacy organizations to bring greater awareness and visibility to HIV and aging, as well as to create space to build community. These organizations help older adults meet the challenges of growing older with HIV while forging communities of those with similar lived experience. Some examples of these efforts are as follows.

The Reunion Project is the national alliance of long-term survivors of HIV. It serves to connect individuals and communities by giving them a safe space to share experiences of survival and loss while honoring the past and to develop successful strategies for living and supporting one another (https://www.reunionproject.net/about). This organization helps those who need assistance finding their way out of the psychological distress resulting from surviving the HIV epidemic. They also host in-person and virtual town hall events across the USA to facilitate dialog between long-term HIV survivors, advocates, and researchers.

Let’s Kick ASS addresses AIDS Survivor Syndrome (ASS), a spectrum of sustained trauma of long-term HIV survivors (https://letskickass.org). This nonprofit organization empowers survivors through connection, re-engagement, and mobilization to foster change. It is also dedicated to fighting ageism by keeping older adults in the conversation and advocating for inclusive representation and care.

The Well Project is a nonprofit organization whose mission is to change the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women and girls (https://www.thewellproject.org/). One component of the organization is its interest in the aging of people living with HIV and addressing the unique struggles they face by providing information and resources for support. One of its most popular programs is A Girl Like Me, a blog where cisgender and transgender women share their experiences and promote an understanding of HIV for younger and older adults alike.

These organizations, and others like them, are notable because they foster social equity and inclusion for older adults with HIV and demonstrate the resilience of older adults who have come together for a common cause to raise awareness of their condition and advocate for community resources. To complement these efforts, however, programmatic and policy efforts at the local, state, and national levels are needed to ensure inclusion and equity for this population.

The public health response to the HIV epidemic must realign itself with the aging of the epidemic and pay more attention to the needs of older adults [53]. Preventing new HIV infections is of great importance; however, attention to newly adapted specialized care models for both HIV treatment and aging is crucial. This requires government to fund the development of new health care models and programs to integrate geriatric care principles into HIV care [8]. Integration of social services into medical care is the crucial next step to successfully assist older adults with HIV. Newly modified health care models and programs should consider the diverse intersectional identities of older adults with HIV in addressing their medical, psychological, and social needs, including health and financial stability [31].

Several programs have been developed to foster collaborative care, such as the National Older Adults with HIV Initiative (NOAH) [54]. NOAH was designed to facilitate the incorporation of community-based education on HIV and aging into existing programs aimed at staff in senior service and AIDS service organizations such as outreach workers, case managers, social workers, nurses, substance abuse counselors, peer educators, and treatment advocates. The four components of NOAH include staff assessment, training, follow-up, and mentoring. NOAH has been successful; trainees acquire increased knowledge of HIV and aging, enabling them to provide more competent and quality services to older adults with or at risk for HIV.

The Golden Compass Program at the Ward 86 outpatient HIV clinic at San Francisco General Hospital provides HIV primary care and specialty services to approximately 2,600 older people with HIV [55]. The program is framed around the four points of a compass: Heart and Mind (Northern Point) includes on-site cardiology, cognitive evaluations, and brain health classes; Bones and Strength (Eastern Point) focuses on bone health, fitness, and physical function, through exercise classes and on-site geriatric consultation; Dental, Hearing, and Vision (Western Point) ensures appropriate screenings and linkage to dental, audiology, and optometric/ophthalmology services; and Networking and Navigation (Southern Point) focuses on social and community-building activities. The Northern and Southern points incorporate mental health and social services, including brain health classes as well as support groups addressing social isolation.

Notable US government programmatic efforts include initiatives by the Ryan white HIV/AIDS Program (RWHAP), under the auspices of the Health Resources and Services Administration (www.ryanwhite.hrsa.gov), to address the needs of clients aged 50 years and older. RWHAP provides comprehensive medical and support services to people with HIV with low incomes and is increasingly tailoring these efforts to address aging issues. The success of these efforts is evident in the fact that 93% of RWHAP older clients are virally suppressed, approximately meeting UNAIDS targets for viral suppression (https://www.cdc.gov/endhiv/indicators/treat.html).

UNAIDS addresses one of seventeen Sustainable Development Goals by providing “strategic direction, advocacy, coordination, and technical support needed to catalyze and connect leadership from government, the private sector, and communities to deliver lifesaving HIV services” (www.unaids.org). UNAIDS proposed the 95-95-95 strategy in 2021 with plans to achieve it by 2025 [23]. In sub-Saharan Africa, which has the largest number of older people with HIV globally [4], meeting these targets has been more successful with older as compared to younger adults [56]. UNAIDS does not have any plans to specifically address older adults with HIV, besides “A special supplement to the UNAIDS report,” a five-page document published in 2013 (https://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2013/november/20131101praging). The only mention of older adults in the new strategy is the acknowledgment of accelerated aging and the multiple comorbidities they may experience. However, no direct plans or services were proposed to comprehensively address issues specific to this population.

In the USA, the National HIV/AIDS Strategy (NHAS) 2022–2025, developed by the White House Office of National AIDS Policy, serves as a guide for developing policies, services, programs, initiatives, and other actions to achieve the nation’s goal of ending the HIV epidemic by 2030 (https://www.hiv.gov/federal-response/national-hiv-aids-strategy/national-hiv-aids-strategy-2022-2025). Unlike UNAIDS, the NHAS devotes an entire section of the strategy to older people with HIV across the lifespan (Goal 2.5). In this section, the multimorbidity this population encounters due to both HIV and aging is addressed. Similarly, the complexity of physical, mental, and social impairments is mentioned, including social isolation, lack of social support resources, and stigma. The NHAS has specific targets for adjusting programs to meet the needs of older adults with HIV. Some strategies that are proposed include the development of collaborative multiagency and multi-sectoral approaches. Further, the NHAS targets populations and geographic areas disproportionately affected by HIV (i.e., non-Hispanic blacks, the southern and rural areas), which will benefit people with HIV of all ages by increasing knowledge/awareness of HIV; augmenting resources and increasing access for HIV testing, treatment, and supportive services; increasing the capacity of public health and health care systems; and ramping up interventions to improve health care outcomes.

These policy initiatives have taken important steps in the right direction. However, we are far from achieving a policy framework that will ensure health equity for older adults with HIV. While ageism and the impact of other intersectional identities contribute to health and social inequalities faced by those aging with HIV, these factors represent larger social and cultural currents that impact broad swaths of older adults regardless of HIV serostatus. The persistence of these inequalities is a result of deliberate policy choices that have failed to prioritize human needs and human rights and diverge from democratic principles [57]. Finkelstein and colleagues have proposed a policy framework called “The New Politics of Care [57].” The core of this framework is a demand for human rights at all levels of governance, rooted in the global work of AIDS activists. This framework articulates a new social contract focused on government, international institutions, and private entities to address the structural failures in our health and social service systems and invest in the health and well-being of people globally, regardless of age and health status.

While existing policy and program efforts to address HIV and aging have been successful, the time has come when raising awareness is no longer enough. Action must be taken, and this responsibility falls on policymakers, health care professionals, researchers, and community advocates alike. Policymakers should ensure their work is grounded in principles of justice and human rights to ensure equitable access to health and social services. Health care providers should provide routine screening for HIV and other illnesses related to the sexual health of older adults. Health and social service providers need to address care engagement and ART adherence, which is so critical for a population experiencing both HIV and age-related health concerns. Researchers should expand their focus from biomedical and clinical work to a better understanding of quality-of-life issues championed by community advocates. Cooperation between all of these stakeholders is vital not only for achieving the public health goals of the UNAIDS and NHAS but also for ensuring access to quality medical care and supporting successful aging for the often-invisible population of older adults with HIV.

Dr. Brennan-Ing receives research funding support from Gilead Sciences and has provided consulting services on educational materials to Theratechnologies, Inc. Ms. Mattas has no conflicts of interest to declare.

No funding was received for the preparation of this manuscript.

Dr. Brennan-Ing and Ms. Mattas were responsible for the conceptualization, writing, editing, and proofreading of this paper.