SPREAD THE WORD
What is AIDS Survivor Syndrome and Why Do You Need to Know?
By Tez Anderson, Founder, Let’s Kick ASS
First the Why
Because too many HIV long-term survivors are struggling to make sense of their lives in the present-day. We’re the survivors of a pandemic now going on longer than 35 years. We’re living lives filled with too many ghosts and the guilt of surviving when so many of our loved ones didn’t.
We living in a world where politicians, policy makers, HIV agencies, and activist are focused on “Ending AIDS” and creating an “AIDS-Free Generation.”
Of course, those are worthy, admirable goals but can you imagine how the phrase an “AIDS-Free Generation” sounds to the first generation who acquired the virus during the “Plague Years”? To people still living with AIDS? Most of us finish that phrase with “after I’m dead.”
For us, AIDS was more than simply a medical diagnosis or the end-stage of a deadly disease. AIDS shaped our psyches. It also galvanized our community and gave us a sense of meaning and purpose.
AIDS was a cultural, political and social force that changed the course of our lives and killed many of our loved ones and decimated our community. AIDS robbed us of a carefree youth while trying to kill us too. Do you know what it is like to have loaded gun aimed at your head for 25 and 35 years?
All of that is affecting our lives right now. And many of us rightly feel forgotten and invisible in the current HIV discussions.
Too many HIV long-term survivors have decided to end their lives rather than face the complexities and implications of aging with HIV. While “Ending AIDS” may be great public health policy and good medicine, but it has huge ramifications on the lives of survivors that must not be ignored.
Many of us are living with AIDS for 20 and 30 years not only living with HIV but actual AIDS. Beyond just having HIV, we are living with AIDS. If, by some miracle, we find some version of a cure or (more realistically various treatments, we call cures) those of us who took AZT and early monotherapy will still have neuropathy and bodies that age faster due to our histories with HIV and AIDS.
We will continue to live in will still be living in poverty and will feel forgotten and ignored unless we change the culture and demand more for those who purport to admire us for what we’ve survived.
We’re focused on is happening right now before us and what we can do to change it. Let’s leave finding a cure to scientists and researchers who have thus far not succeeded and figure out how to take care of older adults aging with HIV and long-term survivors. It is urgent. We do not have the luxury of time.
· Over 4.2 million people living with HIV worldwide are aged over age 50. There are 1.3 million persons with HIV (PWH) in the U.S., as of 2015 over half of them are aged 50 and older, a proportion that will rise to 70% by 2020.
· Recent data from New York City estimates that 26% of all people living with HIV in Manhattan are HIV Long-Term Survivors, meaning they acquired HIV before the availability of Highly Active Antiretroviral Therapy (HAART) in 1996. It is likely that that percentage will apply nationally. We do not yet have those statics.
· The success of HAART in managing HIV infection has been remarkable, with life expectancies of recently infected PWHA in treatment approaching those of non-infected peers.
· Protease inhibitors transformed HIV infection from a “death sentence” to a more chronic but somewhat manageable condition.
· This sea change in the trajectory of the epidemic paved the way for burgeoning cohort of Pre-HAART HIV Long-Term Survivors and the emergence of an AIDS Survivor Syndrome (ASS).
· Pre-HAART and Post-HAART HIV-infection cohorts have distinctly different medical, mental and social health needs.
· For the Pre-HAART HIV Long-Term Survivors (HLTS) who took the first line, inadequate monotherapies quickly developed drug resistances making finding treatment options more challenging. The first medications also exacted an enormous physical toll. Things like lipodystrophy that caused fat redistribution and Peripheral Neuropathy that causes tingling and numbness in the hands and feet. Neuropathy has lasting and permanent implications. It impairs mobility and hampers engagement with the community.
In San Francisco, with its large community of HIV Long-Term Survivors, ACRIA and Let’s Kick ASS — AIDS Survivor Syndrome have worked together to train HIV and Aging providers to create appropriate community-based responses for HIV Long-Term Survivors dealing with AIDS Survivor Syndrome.
What is needed is cultural competency training, so clinicians and HIV service organizations understand not only the effects of aging with HIV but also that longest-term survivors are a different cohort with different physical and psychosocial needs and awareness.
What is AIDS Survivor Syndrome?
AIDS Survivor Syndrome (ASS) describes the spectrum of sustained trauma survivorship. It is psychological state resulting from living through HIV/AIDS pandemic, especially vulnerable are those who became HIV-positive in the 1980s and 1990s, when having HIV was considered a terminal diagnosis.
AIDS Survivor Syndrome IS NOT PTSD. It is akin to Complex Traumatic Stress Disorder. The difference matters.
ASS is a “syndemic” of psychosocial health issues that exists on a spectrum. It varies by degrees of intensity, and it affects HIV Long-Term Survivors differently at different times.
It is not a linear phenomenon, nor is it PTSD.
It a phenomenon unique to long-term survivors and their caretakers who survived the worst decades of HIV.
PTSD is an incorrect diagnosis.
“PTSD has been found to have variable expression and duration, ranging from relatively short-term acute responses to those that are chronic and do not remit, even with treatment. Some cases of PTSD also go dormant for periods of time, emerging episodically, usually in response to triggers of one sort or another that set off the psychobiological PTSD response that in turn cascades into physical and psychological symptoms. Noteworthy for our discussion is that the symptoms required for the diagnosis of PTSD, as it is currently defined, do not cover the full range of posttraumatic impairments. PTSD does not include emotion dysregulation (i.e., extremely intense or absent emotions other than anxiety or dysphoria, e.g., guilt, shame, sadness) and associated dysregulation of consciousness (e.g., dissociation), physical reactions and functioning (e.g., somatization), information processing (e.g., schemas or attention processes that are biased toward expecting to be assaulted, betrayed, exploited, or abandoned), and existential and spiritual adjustment (e.g., a fundamental sense of alienation from oneself, other people, and spiritual faith as a result of feeling permanently damaged)
–(Herman, 1992) from Treating Complex Traumatic Stress Disorders (Adults): Scientific Foundations and Therapeutic Models (p. 19).
What signs and symptoms define AIDS Survivor Syndrome?
- · Depression
- · Lack of Future Orientation
- · Panic from Unexpected Older Age
- · Suicidality
- · Sexual risk-taking
- · Self-destructive Behavior
- · Substance Abuse
- · Social Withdrawal & Isolation
- · Persistent Negative Thoughts like Deep Regret and overwhelming Shame
- · Survivor’s Guilt
- · Cognitive Impairment Such as Poor Concentration and Loss of Immediate memory
- · Loss of Ability to Enjoy Life or Anhedonia
- · Deep Sadness
- · Emotional Numbness
- · Anxiety & Nervousness
- · Irritability or Flashes of Anger
- · Difficulty Falling Asleep or Staying Asleep
- · Nightmares
- · Personality Changes
- · Feeling Tense, “On Guard” or Hypervigilance.
- · Low Self-Esteem & Self-Worth
- · Sense of Hopelessness
- · Irritability
- · Self-Stigma
Depending on other stressors like ongoing multimorbidities and the impact of economic distress the impact on Health-Related Quality of Life (HRQoL) issues can Be devastating. Social isolation, chronic depression, and lack of future orientation are near the top of the list of issues affecting HIV Long-Term Survivors now.
The sustained accumulation of trauma from living through the early decades distinguishes AIDS Survivor Syndrome from the more commonly known Post-Traumatic Stress Disorder (PTSD), in which trauma typically involves a single event or events of limited duration. PTSD is misdiagnosis or a partial diagnosis at best.
AIDS survival has more in common with Complex Post Traumatic Stress (CPTS) because of the duration of the “Plague Years” filled with mass casualties and life-threatening illnesses. For 20 years, people living with HIV were under constant threat of illness and death. And they had witnessed enough of it to know the horror of that death.
There are numerous challenges to survival including high levels of multi-morbidity, persistent behavioral health issues, inadequate social supports, barriers to accessing community-based services, and truncated opportunities for employment and participation in society resulting in inadequate financial resources and poor quality-of-life.
Thus far ASS is a phenomenon that has been well documented anecdotally by long-term survivors. It is unknown what a history of trauma and abuse contributes to making some more susceptible to ASS.
We also do not know what the roles of resilience factors and psychological well-being and spirituality play in creating effective interventions. It is the idea that aging was riddled with terror and more uncertainty after decades of uncertainty, that was the impetus for starting Let’s Kick ASS, a grassroots movement of long-term survivors.
- · Kicking AIDS Survivor Syndrome requires interventions that focus on strengthening resiliencies.
- · Beyond mere survival, we have to change the narrative a thriving mindset and make Healthy Aging with HIV the goal. We need to improve those factors we have control over so aging is not so perilous and fraught with fear.
- · Survivors need to be celebrated and ennobled like survivors of other atrocities.
- · We have to battle and reject HIV-related stigma by strengthening empowered networks of long-term survivors aging with HIV including older gay and bisexual men, women survivors and transgender people. By increasing engagement, we battle depression and hopelessness.
- · We also need Person-Center Health were survivors are partners in their care.
- · Trauma Informed Care is also vital to understanding the full picture of health care for older adults aging with HIV.
- · Cultural humility training to Health Care Providers so they aware of the possible issues affecting an aging population who never expected to be aging.
- · We also know that online social networks are helping older survivors from the community and create in-person communities.
- · We need to explore the role of technology and smartphone apps in helping survivors improve their quantity of life.
- · Finding ways to overcome the financial difficulties faced by many survivors that exclude them from participating in the community.
- · Helping survivors think long-term and to see aging as something to embrace not a barrier or limitation.
- Providers should also be aware of the effects of new trauma that act as triggers. The stunning outcome of the 2016 U.S. presidential election is inflicting trauma on the survivor’s population due to the uncertainty fears associated with a new, possibly hostile administration.
The direction of the Health and Human Services under a hostile director is beyond scary. But we’ve been here before. We lived through 8 years of Reagan and two Bushs. We’ll get through the short-lived Trump debacle.
A Trump presidency compel us to carry on mobilizing, empowering, engaging, unifying all people living with
To learn more, please visit www.LetsKickASS.hiv