Abstract
The aging of people with HIV (PWH) is a major public health accomplishment and a social and cultural phenomenon. It highlights the human capacity to overcome adversity, the effectiveness of public health strategies (e.g., prevention and treatment), and the new challenges as well. Our societies are not well prepared to address the needs of older PWH and the changes they are creating. Stigma toward HIV, older age, and homosexuality, along with racism, have kept PWH largely invisible, resulting in limited investment in prevention and medical and social services. It is imperative that we develop an effective policy response to address the unique needs of PWH. The purpose of this article is to highlight current knowledge and emerging issues in HIV and aging to serve as a foundation on which to develop policy and program recommendations that will meet the new challenge.
Keywords
More than half of people with HIV (PWH) in the United States are 50 years and older (Brennan-Ing, 2020). The aging of the HIV epidemic is here, in the United States and many other countries where antiretroviral therapy (ART) is accessible (Mahy et al., 2014). Globally, there are about 5.7 million PWH age 50 and older, representing 16% of all PWH, and this proportion is expected to rise to 21% by 2020 (Autenrieth et al., 2018). The growth in the population of older PWH is also fueled by new HIV infections. In 2018, 17% of new HIV infections in the United States were diagnosed in that age group (Centers for Disease Control and Prevention [CDC], 2019).
The aging of PWH is a major public health accomplishment and a social and cultural phenomenon (Ramirez-Valles, 2016). It highlights the human capacity to overcome adversity, the effectiveness of public health strategies (e.g., prevention and treatment), and the new challenges as well. Our societies are not well prepared to address the needs of older PWH and the changes they are creating. Stigma toward HIV, older age, and homosexuality, along with racism, have kept PWH largely invisible, resulting in limited investment in prevention and medical and social services (Brennan-Ing, 2020).
It is imperative that we develop an effective policy response to address the unique needs of PWH. The purpose of this article is to highlight current knowledge and emerging issues in HIV and aging to serve as a foundation on which to develop policy and program recommendations that will meet the new challenge.
Sociodemographic Profile of an Aging Epidemic
Older PWH are not a monolithic group but a diverse population regarding age, gender identity, race and ethnicity, sexual orientation, and socioeconomic status (Brennan-Ing, 2020). In the United States, the largest proportion of older PWH were age 50 to 54 years (33%), followed by those 55 to 59 years (29%), 60 to 64 years (19%), and 65 and older (18%; CDC, 2019). Over three quarters of older PWH are male (77%), and 23% are female (CDC, 2018).
Older people of color are disproportionately affected by HIV. Non-Hispanic Blacks are the largest racial/ethnic group of older PWH (39%), followed by non-Hispanic Whites (37%), Latinx (18%), people of multiple race/ethnicities (4%), Asian Americans (1%), and less than 1% each who are American Indians/Alaska Natives or Native Hawaiians/other Pacific Islanders (CDC, 2018).
Among older male PWH, 64% were infected through male-to-male sexual contact, 12% through heterosexual contact, 16% through injection drug use (IDU), and 8% from male-to-male sexual contact and IDU (CDC, 2018). Among older female PWH, 70% of infections were through heterosexual contact and 29% through IDU (CDC, 2018). Historically, the CDC has included transgender women in the classification “men who have sex with men,” making it difficult to estimate the numbers of older transgender and gender-diverse (TGD) older PWH (Brennan-Ing, 2020). More recently the CDC has included “transgender” as a response option in HIV surveillance data and found higher HIV infection rates among TGD people (range = 1.7%–4.7%) when compared to both cisgender men (range = 0.9%–1.4%) and cisgender women (range = 0.2%–0.4%), confirming other research that TGD people (many of them 50 years and older, likely) are disproportionately affected by HIV (Dragon et al., 2017).
A central subpopulation among older PWH are HIV long-term survivors (LTS), and within, there are several groups of HIV LTS. One group of LTS is made of people who have been living with HIV since before effective ART became available (pre-ART LTS). They acquired HIV when the virus was untreatable. They experienced substantial trauma with lasting effects on physical and mental health and overall well-being. Another LTS group comprises those who were diagnosed once effective ART was available (i.e., 1996) and have been living with HIV for 10 years or more (post-ART LTS). The post-ART LTS group has had very different experiences with HIV due to the availability of effective treatment. For example, pre-ART LTS were more engaged in activism, education, and support groups and suffered greater personal loss relative to the post-ART LTS (The Well Project, 2018). A third group of LTS are those who were infected through childbirth and have been HIV-positive their entire lives and are relatively young adults. The last group of LTS is represented by those who are HIV-negative but have experienced the personal and societal consequences of the epidemic throughout.
Older women and TGD with HIV are more likely to be living in poverty (71% and 74%, respectively) than older men with HIV (57%; Cohen et al., 2019). Furthermore, non-Hispanic Blacks and Latinx are more likely to be living in poverty compared to non-Hispanic Whites, regardless of gender identity (overall poverty rates for U.S. adults in this age-group are approximately 9% or less). These high levels of poverty are directly related to low levels of employment. Some research finds that over half of older PWH are on disability compared to between 7% and 17% of people in this age-group in the general population (Brennan-Ing, 2020). In line with the proportion in poverty, three quarters of older PWH report insufficient income (Brennan-Ing, 2020). Furthermore, older PWH in the Ryan White program report high rates of housing instability. Older cisgender men and women with HIV were less likely to report unstable housing (10% and 9%, respectively) compared to TGD PWH (15%). Rates of unstable housing are highest among non-Hispanic Blacks, men, and TGD people (Cohen et al., 2019). In a study of older PWH in San Francisco, 7% reported not having a permanent residence, and 42% were spending half or more of their income on housing (Brennan-Ing, 2020). Nearly two thirds of older PWH in this study were receiving some form of financial assistance. And only slightly more than half of older PWH in the San Francisco study reported food security (56%), while one quarter reported food insecurity and being hungry compared to 12% of the overall U.S. population and 9% of those 65 and older.
Physical and Mental Health
While ART is effective at controlling HIV infection, it does not spare older PWH from experiencing other health conditions, sometimes called comorbidities. These comorbidities may be diseases commonly experienced by people as they age, or they may be related to HIV infection and its treatments (Brennan-Ing, 2020). Older PWH report three comorbid conditions on average, in addition to HIV, and they include certain cancers (e.g., lung, anal, oral, Hodgkin’s lymphoma), cardiovascular diseases, fractures, and hepatitis C. In addition, over 50% of older PWH show signs of HIV-associated neurocognitive problems (e.g., asymptomatic to HIV-associated dementia). Neurocognitive problems are related to other comorbidities as well as behavioral risk factors (e.g., substance use). Being treated for multiple comorbid conditions can result in polypharmacy, which may lead to a number of adverse outcomes (e.g., liver and kidney failure, falls and fractures; Brennan-Ing, 2020).
One explanation for the presence of multimorbidity in older PWH is “accelerated aging.” The accelerated aging theory poses that PWH experience disease conditions at earlier ages than their non-HIV-infected peers (Brennan-Ing, 2020). An alternative explanation is that PWH experience “accentuated aging”: Rather than experiencing the onset of diseases at earlier ages, PWH experience a greater number of conditions at the same time compared to those without HIV. While there is some evidence that accelerated aging exists among PWH, this phenomenon has been observed only in a limited number of diseases and organ systems. Available evidence suggests that accentuated aging is the better explanation for the high levels of multimorbidity among older PWH (Brennan-Ing, 2020).
Older PWH may also face a disproportional burden of depression, anxiety, and substance use disorders. They have rates of depression up to 5 times greater than non-HIV-infected peers (Brennan-Ing, 2020). While we lack a good understanding of the origin of depression in older PWH, contextual factors such as poor physical health, stigma, and loneliness are related to greater levels of depression (Brennan-Ing, 2020; Ramirez-Valles et al., 2013).
Unfortunately, depression and substance use disorders frequently interfere with ART adherence. Depression, in particular, is related to higher levels of suicide ideation among older PWH (Brennan-Ing, 2020).
Social Support and Social Isolation
Social support is critical for well-being as we grow older—and even more relevant for PWH. Early studies of social networks of older PWH characterized their social networks as “fragile,” with a heavy reliance on friends as opposed to family members, and high levels of social isolation (Brennan-Ing, 2020; Ramirez-Valles, et al., 2013). Inadequate social support is associated with nonadherence to ART, which interferes with viral suppression and may lead to poor clinical outcomes such as multimorbidity. Moreover, social isolation also affects mental health and psychological well-being in older PWH and is associated with greater levels of perceived HIV stigma, depressive symptoms, and loneliness (Brennan-Ing, 2020).
Policy and Advocacy Priorities
The (relatively) new face of the HIV epidemic requires a shift on public health policies. The scientific literature briefly outlined above, leads us to suggests the following areas of emphasis to address the public health needs of older PWH.
A Health Care System Prepared to Meet the Needs of an Aging Epidemic. To date, we lack an agreed-upon standard of care for older PWH. This standard of care can be informed by existing geriatric care models. We need to critically examine how well current reimbursement mechanisms and clinical practice serve the older PWH who have complex needs, and who may require more time with a provider and/or different approaches to address the complex intersection of comorbid conditions. In addition, older PWH may require supplementary support in navigating a complex health care environment and accessing services given the high volume of health services needed, barriers to care, and personal factors that might make accessing needed services difficult (e.g., language, immigration status, cognitive difficulties). Recent rollbacks by the federal government in policies regarding equitable treatment of sexual and gender minorities in health care settings, who constitute a substantial proportion of older PWH, can only serve to exacerbate these barriers.
A Focus on Behavioral Health Care. Research consistently finds high levels of mental health conditions (e.g., depression, anxiety, substance use) among older PWH, suggesting a lack of attention to these issues in health care settings as well as a lack of capacity within the system to adequately provide needed services. Contextual factors that promote behavioral health care problems, such as HIV stigma, social isolation, loneliness, poverty, and racism, need to be tackled through policy and program remedies.
Planning for Caregiving Needs and Other Forms of Assistance. While some older PWH have robust social support networks that will be able to meet their needs for caregiving and other types of help as they face the challenges of aging, many, perhaps the majority, do not. Our current system of long-term care services and supports is expensive and does not have the capacity to meet current demands, much less the projected demands given population aging. When asked about plans for caregiving needs when they get older, many older PWH had not even considered being in this situation. Policies are needed to expand long-term services and supports to meet the needs of a growing aging population that includes older PWH.
Recalibrating Community-Based Older Adult and Social Services. Older PWH have many of the same service needs as other older adults, but with a median age of approximately 60, they are not eligible for age-restricted programs such as those funded through the Older Americans Act (OAA). Older PWH would benefit from being able to access mainstream services, and at the same time have community spaces to be with other people like themselves. Two potential ways to facilitate more access are designating older PWH as a “greatest social needs” population under the OAA and/or expanding access to OAA programs to older PWH at a younger age, like 40 or 50.
Ensuring that Health and Social Service Providers Deliver Competent Services. Efforts to broaden health and social services for older PWH will fall short of their goals if providers are not knowledgeable and competent to work with this population, as well as the many subpopulations this group comprises, such as racial/ethnic and sexual minorities, people who are gender diverse, sex workers, and people who use drugs.
Supporting Community Organizing and Advocacy. Several grassroots movements to organize HIV LTS and older PWH have emerged in recent years (e.g., ACT-UP, HIV & Aging Wellness Coalition, Let’s Kick ASS [AIDS survivor syndrome], the Reunion Project). Policies that promote bottom-up community mobilization are needed so public health and social services interventions are effective and sustainable.
These priority areas are not exhaustive, yet they are needed to support the well-being of PWH. It is our hope that community organizations, researchers, and policy makers come together around these foci and face the HIV aging epidemic.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
