Embracing a too often abandoned population
By Stephen Karpiak, PhD

The ACRIA Center for HIV and Aging at GMHC investigates, defines, and seeks to address the unique needs and challenges that older adults of diverse populations living with HIV face as they age. Through research, education, and advocacy, the Center fosters the open exchange and dissemination of information within the lay and scientific communities and among both older adults and AIDS service providers.

Stephen Karpiak, PhD, GMHC’s Senior Director for Research at the Center for HIV and Aging, on faculty at New York University and director of the soon to be launched National Resource Center on HIV and Aging, recommends the following to be part of advocacy efforts by the community and its institutions.

Older adults living with HIV (OAWH) are the majority in the HIV epidemic in the U.S. These older adults include long-term survivors. Yet even for the casual observer of programs based in AIDS service organizations (ASOs) or community-based organizations (CBOs) that target people living with HIV (PLWH), the number of programs aimed at these older adults are scarce. This needs to change. In fact, the activism that characterizes the first decade of the HIV epidemic produced the large networks of ASOs in the U.S. Many OAWH who had once accessed services at these community-based organizations have since abandoned them. They encounter programs where the emphasis on prevention of HIV in high-risk youth and young adult populations often dominates. Such much needed programs are “sexy,” aging is not. Welcome to ageism. We live in a society where youth receive the highest premium. Aging is seen as a disease rather than an inevitable process of living.

As OAWH age and exhibit significantly higher rates of multimorbidity (having two or more chronic conditions), the need to optimize their medical care and supportive services is clear. The HIV treating provider now spends most of their time managing non-HIV conditions. The delivery of medical care to OAWH is a structural issue that can best be addressed by shifts in health policy and the underlying standards of care. This is especially true as health care moves toward a community base. For OAWH, their care needs begin where the HIV Treatment Cascade ends.

Women account for almost 25% of OAWH. They are too often forgotten. They share common needs with older men, but also confront challenges that are unique.

Some might argue that AIDS exceptionalism is no longer operative for these OAWH. They confront the same challenges of aging and managing multiple health issues that are common in the general aging population.

But they are also burdened by toxic levels of stigma and lack of economic supports, as well as poorly managed mental health issues. And, they live each day with an infection that is fatal if not treated relentlessly.

OAWH exhibit 3–5 times higher rates of depression, which is reinforced by their often self-imposed social isolation as a reaction to the fear of disclosing their HIV status—fear of rejection as well as physical harm.

Many observe that as gay activists won the right to marriage, the “glue” of the gay community has been lost. Men who have sex with men (MSM) account for more than half of all OAWH. The slow dissipation of gay communities due to economic intrusions, the web, and shifts in culture have in part caused those communities to be “absent” as OAWH seek their support, especially to meet their need for socialization and caregiving.

Women account for almost 25% of OAWH. They are too often forgotten. They share common needs with older men, but also confront challenges that are unique. Research shows that they are more often far more empowered than their male counterparts and exhibit high levels of resiliency.

Older adults living with HIV comprise a resource that needs to be activated. We can learn from them their remarkable levels of resiliency.

Recommendations

  • As ASOs and other CBOs seek to provide appropriate services for OAWH, they need to bring their OAWH clients into their decision making, but also people from the aging arena. Who knows more about aging and its challenges than those who have worked in, conducted research on, and provided services in aging for nearly a century? HIV hubris must be put aside to make the path clear for those who are most knowledgeable about aging as programs are devised. SAGE and the SAGE network, which focuses on providing supportive services and advocacy for LGBTQ seniors, is an experienced resource in aging. The same applies to AARP as well as the U.S. Department of Health and Human Services’ ACL (Administration for Community Living). Engaging the ACL network by connecting with their local programs, which include sustaining relationships with providers of care and support for those aging, is a logical and economically viable step. There are extraordinary resources that should be joined.
  • ASOs and CBOs need to create a welcoming environment for OAWH. This can result in reducing ageism as well as bridging the chasm between younger and older PLWH as well as engendering their participation in programs. Is the membership of the much-touted local Community Advisory Board (CAB, part of research trials) reflecting the present epidemiology of those living with HIV? Are older adults represented? These same considerations need to occur on local Ryan White Councils (Eligible Metropolitan Areas, or EMAs) and Prevention Planning Groups.
  • Cultural competency regarding OAWH necessitates training of staff, including those at ASOs and local health departments. Many curricula exist that address this need. Targets for such trainings include long-term care facilities as well as other residential programs for older adults.
  • The total sum of resources that support PLWH/OAWH as well as those aging is large. OAWH cannot be connected to available services unless those services have been identified. A simple referral of an OAWH to an agency program is not sufficient. The referral must be made to a person(s) within that agency where the target program or service exists. Platforms have been developed (like One Degree and NowPow [supported by millions of dollars invested by the Centers for Medicaid and Medicare Services]) that are electronic bridges between health care and social service providers. These are partnerships of traditional health care with innovative technology. The programs enable information and services to be identified and made available to clients. These platforms connect patients to community resources that will provide support to manage chronic health and social conditions. Such programs leverage local social support services that can address social determinants of health. ASOs do not need to reinvent the wheel in order to provide supportive services in their community. It has been done—develop partnerships with service providers helping aging populations.
  • Buddy programs (visiting programs) that connect people are needed. It is important to recall that those buddy programs of the 80s and early 90s provided support for people living with HIV who had received an AIDS diagnosis. Prior to antiretrovirals, supporting them was a short-term effort. In fact, with the advent of highly effective HIV treatments, the buddy programs disappeared. Today such programs are needed to provide a human connection, often for many years given the course of most chronic conditions that comprise multimorbidity. New buddy programs need to show efficacy as well. Can they replace the informal caregiving the aging person with HIV needs?
  • OAWH comprise a resource that needs to be activated. We can learn from them their remarkable levels of resiliency. They are a significant resource that can help guide ASOs to develop programs that address their unique needs. Such programs will vary by locality, gender, age group, etc. It is likely that some groups will be small and others larger. Small funding for peer-initiated efforts, using a structured monitoring system, could yield an unexpected array of effective supportive programs.
  • Develop a local or national speaker’s bureau on HIV and aging. Speakers can include long-term survivors and OAWH peers. Care should be taken to assure that the content of speaker presentations is valid and universal.
  • Lastly, an HIV and Aging Conference is needed where OAWH and those who provide clinical and social care are joined. A conference where there can be a frank and safe exchange of ideas is needed. Too often OAWH are relegated to a “guest” appearance. This is unacceptable and needs to be redressed. Such a conference will generate new ideas, validate present efforts, and bring OAWH into the dominant role they deserve based on the present and near future epidemiology of the HIV epidemic.

Older adults living with HIV dominate the epidemic. It is time to acknowledge this reality.