Recommendations on future research priorities for older people living with HIV/AIDS.

We are beginning the fourth decade of the HIV epidemic. In the beginning few would have imagined that HIV/AIDS would evolve into a chronic, manageable disease due to the success of highly-active anti-retroviral therapy (HAART) within our lifetimes. This success has led to increasingly large numbers of long-term survivors, which has changed the face of HIV/AIDS. By 2015 the CDC estimates that half of those living with HIV in the U.S. will be 50 years and older.

However, this success is not without its challenges. Many of those aging with HIV are also living with a considerable burden of disease as a result of the early onset (often in their 50s) of multiple comorbid conditions (e.g., heart disease, cancers, osteoporosis, diabetes) as well as continued elevated levels of mental health issues like depression, active substance use, stigma-driven social isolation and concomitant loneliness. Unlike the general population, these older adults with HIV do not have the social supports they will need to age successfully. Nonetheless, there are significant levels of resilience among these long-term survivors that should not go unnoticed.

Understandably, there is an increased research focus on the medical management of HIV in the older patient. Few have assessed how psychosocial factors can contribute to better health outcomes and quality-of-life issues. ACRIA’s seminal study on this population, Research on Older Adults with HIV (ROAH),[1] was a detailed comprehensive needs-assessment of adults aging with HIV. ROAH, and past studies conducted by ACRIA and other scientists, serves as the basis for the following recommendations on research priorities for older people living with HIV/AIDS (OPLWHA), as well as some caveats as we move forward with this work.

State of the Research on OPLWHA

With few exceptions, most research on HIV relies on convenience samples, making it difficult to generalize findings.  Like GLBT studies, researchers have difficulty in constructing a representative sample for the simple fact that we do not have good population-based data to know whether or not any given sample is representative. While the ROAH study enrolled a 1,000 person cohort, most of these participants were Medicaid-dependent and recruited from AIDS service organizations (ASOs) so that persons of higher socio-economic statuses, Caucasians, and those receiving assistance from non-Medicaid providers were probably not well-represented.

Research on OPLWHA is also limited because the vast majority is cross-sectional, hampering our ability to understand the effects of aging and development. That is, we get a snapshot of participants at one time point, which limits our ability to examine cause and effect relationships or examine a particular phenomenon, such as substance use, over time. In the few longitudinal studies that exist, age is rarely considered a variable of interest even when older adults are included in the sample. The longitudinal studies that are currently being conducted (e.g., Veterans Aging Cohort Study [VACS], Women’s HIV Interagency Study [WHIS], Multicenter AIDS Cohort Study [MACS]), have provided detailed information on the progression and treatment outcomes of HIV, but have not related their data to many of the psychosocial issues we raise below. Thus, we need to establish population-based data on this population that would allow us to construct representative samples, and use longitudinal research designs that will allow us to track the course of aging with HIV over time.

Behavioral Research Priorities for an Aging Population with HIV

In ROAH, a picture emerges of three major and inter-connected threats to successful aging with HIV: stigma, mental health and social isolation. Stigma remains a powerful and toxic factor for those living with HIV, and contributes to poor mental health outcomes and greater degrees of social isolation.

Mental Health. Our research has consistently found elevated levels of depressive symptoms among OPLWHA, approaching five times the rates of depression found in community-dwelling middle-age and older adults. OPLWHA have even higher levels of depression than others with serious, stigmatized conditions, such as visual impairment. What is even more remarkable about the high rates of depression is that these older adults are fully engaged with the health care system, seeing their providers several times per year.  This suggests that current standards of care for behavioral health services are inadequate and must be reassessed.  

At the same time, we see high levels of past and current alcohol and other drug use (marijuana, cocaine, crack, and heroin) that exacerbate mental health issues. By not adequately addressing the mental health needs of OPLWHA treatment and health outcomes are jeopardized. Depression is the single best predictor of not adhering to HIV and other medical treatments. Alcohol and other drug use can also interfere with adherence to and the effectiveness of medication. We need to know much more about the etiology of depression among OPLWHA through longitudinal research. In addition, more attention must be paid to developing effective interventions to better resolve these conditions. Lastly, we need more research that examines resilience factors, such as coping mechanisms, including spirituality, to understand the positive factors that shape the lives of OPLWHA and how they can be used to optimize their health status. For example, a recent paper based on the ROAH study found that OPLWHA who had higher levels of psychological well-being were more likely to use condoms.[2]

Social Isolation, Loneliness and Support. Social isolation and resultant loneliness are endemic among OPLWHA. Fewer than 20% have a partner or spouse, and they are about half as likely to have a living child as adults 65 and older. Approximately 70% live alone, which is nearly twice the rate of other older adults. OPLWHA tend to have friend-centered networks that we have typically associated with the LGBT community, yet two-thirds of these adults identify as heterosexual. And while friends do provide needed support, many also have HIV. Also, OPLWHA do not disclose their serostatus to many friends.

Beyond the high rates of loneliness and poorer quality-of-life, social isolation also points to an impending shortfall of the support these older adults will need now and as they grow older and confront multiple health issues. Caregivers are derived from these social networks. Without caregivers, OPLWHA will need to increasingly turn to supports that are medically based, as well as formal community-based social services that address their treatment and care needs. However, ASOs and other HIV service providers are not experienced in the domain of aging. Conversely, most aging service providers have little knowledge of HIV. 

Research is needed to better understand the causes of social isolation among OPLWHA, as well as studies that examine dynamics of social support among this population to better understand their needs and how they are met. We need to develop and test interventions that can serve to reduce social isolation and increase available levels of support. Furthermore, we need research on the service utilization patterns and associated factors (i.e., needs, service barriers) that can provide an evidence base for policy makers and program planners to address the growing needs of this aging HIV population. Lastly, we need to better understand how to better integrate HIV and aging services with research targeted at understanding how we can best leverage the resources available from these providers.

HIV Education and Prevention

The myth that older adults do not have sex or use drugs leads to a lack of HIV testing among this population. Lack of public education about HIV/AIDS targeted at older adults results in a poorly informed group of older adults who are not knowledgeable about how to protect themselves against HIV and other STI infections. The CDC currently estimates that 17% of all new HIV infections occur in people over the age of 50. Physicians are often reluctant to address sexual health and sexual risk issues with their older patients, since they do not consider them to be at risk and are afraid of offending them by delving into these issues. However, adults over 50 who receive an HIV diagnosis are significantly more likely to receive a concurrent AIDS diagnosis compared to their younger peers (51% vs. 33%). Thus, not only are older adults referred for testing much later in the course of their illness, but many may be passing on the virus because they are unaware of their serostatus.

We need more research on the sexual health of older adults, including sexual minorities (i.e., GLBT individuals) to be able to better educate medical providers in the care of their older patients. It is also important to note that OPLWHA remain sexually active, and some continue to engage in high-risk sexual and substance use behaviors. Thus it is important to test the effectiveness of both primary and secondary prevention programs for older adults living with or at risk for HIV, in order to maintain and/or reduce the incidence of HIV infection among our older citizens. While test and treat has emerged as a powerful primary HIV prevention initiative, this approach has not been validated in older adult groups. In addition, there are no evidenced-based interventions that have been designed specifically for older adults, and little effort is expended in evaluating existing interventions that have been adapted to the older population.  

Conclusions

Research can be a powerful tool in empowering OPLWHA to live healthy, happy and productive lives. Health care providers are becoming aware of the importance of addressing the psychosocial issues and needs of this population, not only because it will improve treatment outcomes, but because it will help adults with HIV age successfully. HIV is no longer a disease that affects primarily young men and women, and our research must mature as this population itself matures. Gathering evidence through research that addresses the challenges facing OPLWHA will help to improve their circumstances, and in turn, contribute to our aging society as a whole.

 

Mark Brennan-Ing, Ph.D., is a Senior Research Scientist at the AIDS Community Research Initiative Center on HIV and Aging. He is a Past-President of the State Society  on Aging of New York, a Fellow of the Gerontological Society of America, a board member of the New York Association on HIV Over 50, and holds editorial positions with Gerontology and Geriatrics Education and the Journal of Religion, Spirituality and Aging. He was recently appointed as a member of the NIH Office of AIDS Research Working Group on HIV and Aging. He is the author of over 70 peer-reviewed journal articles, book chapters, books and monographs, including Older Adults with HIV: An In-depth Examination of an Emerging Population (Nova Science Publishers).

Stephen E. Karpiak, Ph.D., is Associate Director for Research at the AIDS Community Research Initiative of America (ACRIA). Dr. Karpiak launched ACRIA’s behavioral research efforts in 2002, with a focus on older adults with HIV. He was principal investigator on the seminal large-scale study, Research on Older Adults with HIV (ROAH), a comprehensive needs-assessment of 1,000 individuals which greatly increased the visibility of the issue of aging with HIV. He is the author of over 250 articles in scientific journals, and is frequently invited to lecture on the topic of HIV and aging at national and international venues. Prior to his work on HIV and LGBT issues, Dr. Karpiak had a distinguished research career as a research scientist in neurobiology and immunology at Columbia University.