Navigating HIV Challenges in Aging: A Call for Inclusive Policies

The convergence of HIV and aging presents a multifaceted landscape where policy advocacy holds immense potential to shape the experiences of older people who are living with and affected by the virus. In the United States, the demographic profile of HIV is rapidly aging, with projections indicating that by 2030, 70% of those living with HIV will be ages 50 or older. This shift underscores the pressing need to address the unique challenges faced by this population, while continuing to confront enduring stigma and discrimination within the HIV community.

Understanding the intricate dynamics between policy and the lived realities of people aging with HIV becomes increasingly imperative as the community matures. Delving into the expanding service needs of older individuals affected by HIV, including access to care, treatment and support services, is paramount. Additionally, it is essential to explore how programs funded through the Older Americans Act (OAA) and long-term care initiatives are adapting to better serve this demographic.

Also, we must examine the importance of tailored HIV testing and prevention services for elders, as well as how service providers can advocate for the specific needs of this community. By shedding light on these issues, we can prioritize the holistic well-being and dignity of older people navigating the complexities of HIV. Policy reform and advocacy efforts aimed at creating inclusive and supportive environments for older adults affected by HIV are imperative.

Age Is Not a Condom

Knowing one’s HIV status is key to accessing timely prevention and treatment services—crucial components of HIV medical care. Regrettably, HIV testing and treatment strategies have predominantly targeted younger adults, inadvertently neglecting elders.

Between 2017 and 2021, CDC data revealed that more than 4,000 U.S. individuals ages 65 and older were diagnosed with HIV. The CDC recommends HIV testing for people between ages 13 and 64 as part of routine healthcare but excludes those older than age 65. This omission not only jeopardizes lives, but also undermines efforts to combat the HIV epidemic effectively as people ages 65 and older are more prone to receiving a late-stage diagnosis compared to their younger counterparts.

A 2017 study unveiled a troubling trend wherein many healthcare providers underestimate the vulnerability of older adults to HIV, resulting in alarmingly low testing rates in this demographic. Older individuals deserve access to timely healthcare if diagnosed with HIV, as well as access to HIV prevention tools such as Pre-Exposure Prophylaxis (PrEP) and Post-Exposure Prophylaxis (PEP). But, achieving this necessitates recognizing the full humanity of elders, initiating dialogues about their susceptibility to HIV, and integrating HIV testing as a routine aspect of healthcare.

In a groundbreaking move in November 2016, New York State abolished the upper age limit for recommended HIV testing through Public Health Law 2781-a, underscoring the importance of testing across all age groups and the need for national guideline revisions. As momentum builds across the nation to eliminate age barriers in HIV testing policies, all service providers must acknowledge the significance of offering sexual health services to older individuals. Embracing this paradigm shift would ensure that everyone, regardless of age, is encouraged to undergo HIV testing, thereby promoting early detection, prompt treatment, and ultimately contributing to improved public health outcomes.

Contrary to common assumptions, research from the 2018 National Poll on Healthy Aging reveals that a significant proportion of individuals ages 65 to 80 are sexually active, underscoring the pressing need for regular HIV testing in this age group. Confronting this reality head-on necessitates advocating for a comprehensive approach to sexual health and care that includes routine HIV testing.

HIV, Aging and the Imperative of the OAA

Most people prefer to avoid entering institutional long-term care. Besides being prohibitively expensive for most Americans, it takes them away from the homes they’ve made for themselves and distances them from their communities. But what many don’t realize is that a law enacted in 1965 can help them avoid that reality—and key aspects of recent regulations have directed this law to reach older people living with HIV.

Lyndon B. Johnson passed the OAA in 1965, establishing funding for community-based social services and a federal Administration on Aging. Today, the OAA receives $2.2 trillion (a relatively small amount compared to other federal budget priorities) to ensure people older than age 60 can age independently in their communities. For older adults living with HIV, this is particularly significant, although much of this community remains unaware of which programs the OAA funds, as historically many HIV providers have not coordinated with OAA-funded providers nationwide.

HIV-inclusive OAA programs and services are not only a necessity, but a requirement.

The recent regulatory update to the OAA—the first since 1988—updated the definition of greatest social need to include older adults living with HIV. But what could this look like in practice? It may look like Oklahoma’s Department of Aging creating focus groups of people living with HIV and AIDS service providers to help inform their state plan on aging. The department worked with the Oklahoma Department of Health and other partners to disseminate information on the OAA through local AIDS services organizations, while training Area Agencies on Aging (AAAs) about aging with HIV and its prevalence in older Oklahomans.

Aging providers could follow the lead of Illinois by including questions about HIV in intake forms and training the Aging Network on how to answer those questions, which is gratis for those who receive ACL funding there.

In Multnomah County, Ore., the AAA aimed to provide seven meals a week to homebound long-term HIV survivors older than age 50 each year of their 2021–2025 Area Plan, and increased awareness of services related to healthcare decision making, navigating federal Veteran’s Affairs, Ryan White programs and other entitlements aimed at people aging with HIV.

Along with being left out of conversations surrounding aging, older people living with HIV often feel ignored in conversations about HIV care, creating a double stigma. Because of this, older adults with HIV are less likely to reach out to mainstream providers—such as those offering OAA programs—that are outside of their trusted circles, despite these programs offering much-needed support.

Imagine if all State Health Insurance Assistance Programs (SHIPs) coordinated with HIV service providers to ensure that dually eligible participants had access to Medicare and Ryan White programs; if chronic-disease self-management education programs funded by the OAA had HIV-specific aging content; if people living with HIV felt comfortable accessing the transportation assistance provided by their local AAA and could access the healthcare that keeps them virally suppressed and healthy.

This doesn’t need to be an imagined future; with cultural competency training for those working in the aging network, targeted outreach to people aging with HIV and programs serving them, plus coordination across care providers, we can realize an inclusive OAA that serves our most marginalized communities. We know that isolation, ageism, and financial insecurity are risk factors for the general aging population; but for people living with HIV, those factors are multiplied. This makes HIV-inclusive OAA programs and services not only a necessity, but a requirement.

Long-Term Care Bill of Rights Challenges HIV Stigma

Persistent HIV stigma is having a sweeping effect on OAA-funded aging services and long-term care facilities. This stigma shows up in scenarios from nursing homes refusing to serve someone living with HIV to well-meaning older adult centers unintentionally sending the message that participants living with HIV are not welcome. While the inclusion of those living with HIV as a population of greatest social need under the OAA helps bolster HIV competency services to support individuals aging in place in their communities, what about those who need to enter long-term care?

Many older adults aging with HIV experience compounding non-HIV–related chronic conditions and accelerated aging that increases the likelihood of needing to stay in long-term care. Yet, HIV stigma and discrimination remain rampant in the long-term care industry, with harrowing reports dating back to the 1990s, which have never been adequately addressed.

To combat this widespread discrimination, California, Washington, DC, Montgomery County (Maryland), New Jersey, Oregon and New York have passed legislation to protect long-term care residents from discrimination based on real or perceived sexual orientation, gender identity, expression or HIV status.

These bills, often titled “LGBTQ+ and HIV Long-Term Care Facility Residents’ Bill of Rights,” ensure that residents living with HIV are protected by:

  1. requiring staff training on best practices for caring for LGBTQ+ residents and residents living with HIV,
  2. explicitly prohibiting specific actions and inactions in long-term care facilities and by their staff, (such as denying someone a bed due to their HIV status or socially isolating/refusing casual contact with someone living with HIV), and
  3. requiring facilities to prominently display these resident rights and establish a mechanism for the resident or members of their family/support systems to report any violations.

These types of bills must be pursued in other states and municipalities.

Outside the long-term care industry, older adult centers and other aging services providers also can do their part to combat HIV stigma and to better promote healthy aging by incorporating HIV- and LGBTQ+-competent sexual health and wellness programming into their provided services.

Providers can play a key role in promoting sexual health by allowing space to explore what sex and intimacy are like as people age. These conversations are especially important as many older people SAGE works with have consistently reported that education around PrEP, PEP and U=U (Undetectable Equals Untransmittable) is not provided to their peers and almost never occurs in the medical provider’s office, due to ageism.

Unraveling the Intersection between HIV and Aging Policy

The intersection of HIV and aging policy is a nuanced landscape that demands careful examination. Policies addressing HIV often focus on prevention and treatment among younger populations, overlooking the unique needs of older adults living with HIV. Additionally, aging policies may not adequately consider the experiences of individuals living with HIV as they age. This intersectionality underscores the importance of understanding the complex interplay between HIV and aging policy to ensure comprehensive and inclusive approaches that address the diverse needs of older adults living with HIV.

‘Policy reform efforts should aim to eliminate age-related barriers to accessing HIV care and treatment.’

Addressing the intersection of HIV and aging policy effectively requires a concerted call to action for policy reform and advocacy. This includes advocating for policies that prioritize the needs of older adults living with HIV, such as increased funding for HIV prevention, treatment and support services tailored to the unique challenges faced by this community. Additionally, policy reform efforts should aim to eliminate age-related barriers to accessing HIV care and treatment, ensure comprehensive healthcare coverage for older people living with HIV, and promote research into aging-related health disparities in the HIV community.

Ultimately, the goal of intersecting HIV and aging policy is to foster a world of inclusive, dignified and holistic care for those affected by HIV. This entails creating policies and systems that prioritize the well-being and dignity of older people living with HIV, including culturally competent and age-appropriate healthcare and social services, support for mental health and social well-being, and access to affordable housing and social support networks.

By fostering a supportive environment that addresses the intersecting needs of older adults living with HIV, we can strive toward a future where all individuals are able to age with dignity and access the support they need to thrive.

A Call to Action

Professionals in aging services wield considerable influence in advocating for policy changes that better support older individuals affected by, or vulnerable to, HIV. Through active engagement in advocacy initiatives at local, state and national levels, aging providers can effectively spotlight the unique needs of this community and champion policies promoting equitable access to care and enhanced quality of life. This necessitates forging alliances with HIV/AIDS advocacy organizations, healthcare providers and individuals with lived experience to amplify their advocacy efforts and maximize their impact.

Central to prioritizing the well-being of older people is the importance of offering sexual health services, expanding HIV testing, and ensuring access to appropriate HIV prevention tools such as PEP and PrEP. Community involvement and empowerment serve as the linchpins to instigate this essential transformation. Offering these services is vital regardless of whether a provider is aware of how many clients they serve who are living with or vulnerable to HIV, as assumptions only feed into existing stereotypes and stigma.

It is incumbent upon each of us to raise awareness, challenge ageist stereotypes and HIV stigma, and advocate for the elimination of the CDC’s upper age limit recommendation on HIV testing. Collaboration with policymakers, healthcare providers, and community organizations are critical in emphasizing comprehensive HIV testing and sexual health services for people across all age groups, including elders.

Engagement with older community members, dissemination of crucial HIV information, and encouraging access to HIV testing services, including free HIV self-tests, are integral facets of advocacy efforts. Furthermore, advocating for local HIV testing providers to proactively reach out to older people through established aging programs is indispensable. By synergizing our efforts, we can ensure no one is left behind in the endeavor to eradicate the HIV epidemic in the United States.

Recent regulatory updates to the OAA have given us key tools to advocate for services that reach people aging with HIV, but the aging network may not be prepared to fulfill the needs of this community. Training to avoid stigmatizing language, active work to break down silos between HIV care networks and aging care networks, understanding trusted messengers, including people living with HIV in planning efforts and advisory boards—all of these steps are necessary to achieve a better quality of life for the more than 50% of people living with HIV who are older than age 50.

On the local level, many elected officials, aging services providers and other community stakeholders might not be aware of HIV and how it impacts older adults. It is important to talk to representatives about the intersection of HIV and aging, foster connections between local aging services providers and HIV service providers, and push for legislative solutions in states or municipalities such as the LGBTQ+ and HIV Long-Term Care Bill of Rights.

Efforts also must be made to combat ageism and stigma around sexually transmitted diseases to ensure that open conversations and programming about sexual health and wellness become commonplace at older adult centers, nursing homes and geriatric care facilities.

As we navigate the complex landscape of aging and HIV, we must recognize the pivotal role of advocacy and collaboration in effecting meaningful change. By joining forces, we all can advocate for policies prioritizing the well-being of older adults affected by, or vulnerable to HIV. Through proactive engagement, awareness-raising and legislative action, we can create a future where equitable access to care and supportive services is the norm for older adults. Together, let’s continue to challenge ageist stereotypes, combat HIV stigma, and build inclusive communities where everyone can thrive.

Terri L. Wilder, MSW, is the HIV/Aging policy advocate, and Emma Bessire is the campaign manager, both at SAGE in New York City. MJ Okma is founder and principal of Okma Strategic Consulting.

Photo credit: Shutterstock/Chinnapong