Out On The Couch
Long-term Survivors Living with HIV: History and Clinical Considerations
This year, more than 70% of people living with HIV (PLWH) in the U.S. will be ages 50 and older–up from 50% in 2015 (Anderson, 2015). The HIV epidemic has disproportionately impacted LGBTQIA+ people and people of color since its inception (Anderson, 2015). As anti-retroviral therapy (ART) continues to improve, the number of older PLWH will continue to increase. Therefore, it is essential that mental health professionals understand the challenges facing this underserved population, and identify appropriate treatment interventions to overcome these challenges. In this article, I will examine the specific needs of long term survivors (LTS); in my next article, I will discuss best practices and effective interventions.
LTS can be defined within four categories:
Those individuals who have survived being diagnosed with HIV before 1996 and the advent of protease inhibitors.
Those individuals who suffered great losses during the early days of the epidemic, but did not themselves seroconvert until after 1996.
HIV-negative loved ones and caregivers, including doctors and mental health professionals, who witnessed the darkest days of the epidemic. They are also survivors in their own right.
Those diagnosed after 1996 who have been living with HIV for over two decades. This “second wave” of survivors differs greatly from the other three categories. Many individuals in the second wave are unlikely to have experienced the horror of “the plague” in the early days. Hence, they are less likely to have suffered as much loss and trauma. However, they are aging with HIV and face many of the same issues as other LTS.
There are also subgroups within these categories, such as those who were diagnosed with AIDS in the 1980s or 90s and who have severely compromised immune systems, and others who were diagnosed but never developed opportunistic infections and whose immune systems remained relatively intact. The needs and concerns of these two subgroups may differ somewhat.
The AIDS epidemic has entailed a series of traumatic events for LTS. The trauma of losing so many friends at once at an inappropriate time developmentally, and the devastation AIDS brought to the LGBTQIA community as they witnessed their loved ones disappearing before their eyes, are experiences unique to this first generation of LTS. They are analogous psychologically to what soldiers returning from a war may endure; as in during wartime, some people experience symptoms of Post-Traumatic Stress Disorder (PTSD).
PTSD is defined as “a frequently debilitating psychological disorder stemming from experiencing or witnessing traumatic events, such as physical violence, with symptoms of depression and anxiety, which can significantly affect a person’s ability to function in life and experience pleasure” (LeGrand et al., 2015). Rates of PTSD in PLWH may be anywhere from 13 to 64%, and in a U.K. survey of 100 gay men, 33% met the criteria for an HIV-related diagnosis of PTSD (LeGrand et al., 2015). In that same survey, researchers found that patients receiving medical treatment, experiencing physical symptoms, and witnessing HIV-related death were most frequently associated with HIV-related PTSD symptoms (LeGrand et al., 2015).
The effects of sustained trauma may present a combination of symptoms such as depression, anxiety, emotional numbness, anger, survivor’s guilt, insomnia, nightmares, hypervigilance, hopelessness, substance abuse, sexual risk-taking, emotional numbness, low self-esteem, social withdrawal and isolation, and/or a lack of future orientation. Survivor’s guilt is a phenomenon that “people experience when they’ve survived a life-threatening situation and others might not have,” (Raab, 2018) and is a common PTSD symptom among PLWH. Depression, too, is a common co-morbidity in PLWH, with a 20 to 37% prevalence (Erenrich et al., 2018). This is three times greater than in the general population, and rates of depression do not appear to decline with age as they do within the general population (Erenrich et al., 2018).
Along with experiencing depression, older HIV-positive adults tend to be more socially isolated than their younger counterparts. Older people with HIV are also more likely to live alone. Although suicide rates in general have been on the decline since 1996, they are higher in people living with HIV, and substance use disorders are also disproportionately higher and can affect medication adherence and rates of depression (Anderson, 2015). Moreover, interactions between some HIV drugs and recreational drugs can be very dangerous.
There are also a myriad of psychosocial challenges facing LTS aging with HIV. Many lack support systems, as they may not have children or grandchildren to care for them, and their friends and lovers have died. Appropriate medical and coordinated long-term care are difficult to find due to the paucity of health care professionals trained in HIV and geriatrics. Many assisted living, nursing home, and hospice staff have no formal training and little experience working with an aging LGBTQIA+ population or PLWH. Further, many LTS didn’t plan for retirement because they didn’t expect to live that long. Numerous long-term care programs designed for those who were expected to become disabled and die from AIDS were eliminated when antiretroviral therapy enabled recovery and the potential for a normal lifespan emerged (Anderson, 2015).
In the early days of the epidemic, many LTS became so sick that they lost the ability to work and went on disability. This means that while LTS may now be well enough to work, they lack current, marketable job skills, and barriers such as ageism make it very difficult to find employment. Other psychosocial factors for consideration include stigma and discrimination LTS face for reasons in addition to being HIV-positive–such as being gay, aging, or using substances. Having “The Look,” which entails sunken cheeks, a protruding belly, and a buffalo hump, is the scarlet letter of HIV that can be highly stigmatizing. People still believe many damaging myths about HIV, which means that some PLWH are ostracized by family and forced to keep their utensils and dishes separate from others in the household because of myths about contagion. LTS continue to face discrimination in housing and healthcare. All of this can affect adherence to treatment and stop people from seeking out psychotherapy.
Before we can fully understand and address these issues, we, as mental health professionals, must recognize and acknowledge them. In the next article, I will explore in more detail the myriad interventions, techniques, and strategies that have proven effective in helping patients overcome challenges and thrive in their later years.
Learn more about working with LGBTQ Older Adults
Anderson, T. (2015, August 18). HIV Long-Term Survivors Declaration: A Vision for Our Future 2019. Let’s Kick ASS – AIDS Survivor Syndrome. https://letskickass.hiv/with-courage-and-compassion-long-term-survivors-of-hiv-strive-not-only-to-survive-but-also-to-ee056d372994
Brennan, M., Karpiak, S. E., Shippy, R. A., & Cantor, M. H. (Eds.). (2009). Older adults with HIV: An in-depth examination of an emerging population. Nova Science Publishers.
Erenrich, R., Seidel, L., Brennan-Ing, M., & Karpiak, S. (2018). HIV & Aging in San Francisco: Findings From the Research on Older Adults with HIV 2.0 San Francisco Study Autumn 2018.
Raab, Diana (2018, January 26). What Everybody Should Know About Survivor’s Guilt./em> Psychology Today. https://www.psychologytoday.com/us/blog/the-empowerment-diary/201801/what-everybody-should-know-about-survivors-guilt