What’s in a Name? AIDS Survivor Syndrome (ASS)
New Research Announcement
By Tez Anderson, Founder, Let’s Kick ASS
Updated February 5, 2018
BETA (blog by The San Francisco AIDS Foundation published a piece about our November Research Announcement town hall. They got a few things wrong. I was diagnosed in 1986 not 1987, but more importantly, I acquired HIV in 1983. They linked to the wrong website, not this one. I also don’t know that the author knows that I coined the term “AIDS Survivor Syndrome”, but I love that it is a “thing” that is in the world taking on a life of its own.
But this excerpt is a good short overview of what is contained in detail in this article:
The research on AIDS Survivor Syndrome
Stall, using data from the Multicenter AIDS Cohort Study (MACS), has been studying AIDS Survivor Syndrome and how it affects people who have lived through the HIV epidemic. Started in 1983, the MACS is a study of more than 7,000 men who have sex with men (both HIV-negative and HIV-positive) who complete twice-yearly health and behavioral assessments to study the health effects of HIV infection. Stall reported that as of 2013, the average age of people in the study was 56, and roughly half of the men (49%) were living with HIV.
More than a quarter (27%) of men surveyed in the study had lost more than 10 people close to them to AIDS. 35% of men reported that they “still grieve” for these lost people, 7% of men reported that they “still deeply grieve,” and 3% reported that they “grieve these losses nearly every day.” About half (49%) agreed with the statement that “Because of the HIV epidemic, I never thought I would live as long as I have.”
To assess AIDS Survivor Syndrome, Stall’s research team asked participants about symptoms they theorized constitute AIDS Survivor Syndrome, including depression, isolation, anxiety, difficulty sleeping, feelings of despair for the future, nightmares, emotional numbness, strong feelings of anger, and feeling threatened.
Half of the men in the cohort had none of these symptoms, while the rest reported experiencing one to all nine of these symptoms at some point over the last six months. Nearly a quarter of men (22%) reported experiencing three or more symptoms “fairly frequently.”
“Most of us are doing OK, or very well, but there is a small cluster of guys who probably really do need some kind of help in dealing with the long-term effects of the epidemic,” said Stall.
Stall’s research team tested the statistical “clusterness” of symptoms as a way to see how well they “hung together” as part of a related syndrome. (Stall explained that for a condition to be characterized as a “syndrome,” signs and symptoms would need to occur together.) All of the symptoms, except nightmares and trouble sleeping, were statistically linked.
Interestingly, said Stall, people in the study who were HIV-negative seemed to be as affected as men living with HIV.
“The [HIV] negative men are also suffering significantly from repercussions of the epidemic, it would appear,” said Stall. “I immediately thought of a friend of mine, that I was close to in San Francisco, who wears a chain around his neck with two wedding rings. He has buried two partners.”
More than a quarter (27%) of men surveyed in the study had lost more than 10 people close to them to AIDS. 35% of men reported that they “still grieve” for these lost people, 7% of men reported that they “still deeply grieve,” and 3% reported that they “grieve these losses nearly every day.” About half (49%) agreed with the statement that “Because of the HIV epidemic, I never thought I would live as long as I have.”—February 1, 2018, by Emily Land at betablog.org/aids-survivor-syndrome/
Foreword
Since founding Let’s Kick ASS in 2012 we’ve received hundreds of messages and emails from people who were living with something they didn’t have a name for and they could not find support for their experiences surviving the AIDS Epidemic.
While there is much anecdotal evidence to support the existence of AIDS Survivors Syndrome and experts who agree; however we did not have research data to back it up. That changed on November 3, 2017, when Let’s Kick ASS held a town hall entitled “Research on the AIDS Survivor Syndrome: New Data from the Multi-Center AIDS Cohort Study (MACS) and Voices of Survivors Themselves.”
Ron Stall, Ph.D., M.P.H., Director of the Center for LGBT Health Research and Associate Chair for Science Dept. of Behavioral and Community Health Sciences at the Graduate School of Public Health at the University of Pittsburgh presented his data. The room was packed with 120 attendees. A mix of community and providers. The Q & As were amazing.
Dr. Ron Stall and his team, Dan Siconolfi and Michael Plankey with James Egan, Mackey Friedman, Omar Dakwar, and Deanna Flynnhad at the University of Pittsburgh looked at the definition of AIDS Survivor Syndrome (ASS) and extrapolated using data to see if this syndrome exists, and it’s prevalence.
This piece is a recap of Dr. Stall’s talk. It is his notes combined with additional thoughts by me. Further down are the slides he used. We are finishing the post-production of the video of the talk. It will be posted at LetsKickASS.hiv as soon as it is uploaded. You can download the entire set of slides as a PDF here: http://bit.ly/ASSresearch
Since I coined the term “AIDS Survivor Syndrome (ASS),” I’ve heard from thousands of HIV Long-Term Survivors who feel relief to read about it. For women and men who lived through the Dying Years of the AIDS epidemic filled with fear, frustrations, funerals and unimaginable stigma — surviving became the problem. There was no one talking about the complexities of survivorship.
It’s integral to their epic heroic journey. ASS is a normal response to an extraordinary experience. It speaks to the astonishing resilience it took to be a person aging with HIV, especially after decades of planning to die and burying vast swaths of their friends, loved ones, and community.
Survivors feel validated and supported. It is a badge of honor, and they feel motivated to look toward a future they never dreamed of living. It was intended to be something we could call our own. Now there is research to back it up.
Statements from HIV Long-Term Survivors on AIDS Survivor Syndrome
Also download a two-page PDF “What is AIDS Survivor Syndrome” to share with providers, loved ones, or anyone who wants or needs to understand here: http://bit.ly/WhatIsASS2017pdf (This document needs updating but the information is still good.)
Goals of the Talk
- To present data from the MACS that test whether something like an “AIDS Survivor Syndrome” exists among aging gay men
- To share findings at a very early stage of our analysis of data from the MACS with a community of men who have been infected with HIV or affected by HIV for decades on end
- To have a community discussion about the best use of the data from the MACS to address the long term psychosocial effects of the AIDS epidemic and so help raise levels of health among aging gay men
Affected individuals often say they have “PTSD” but it is more complicated due to the duration of the epidemic which began in 1981 is now going into its 37th year. It was 1996 before Highly Active Antiretroviral Therapy (HAART) which became widely available in 1996 and changed the game.
What is AIDS Survivor Syndrome?
“AIDS Survivor Syndrome (ASS) describes the spectrum of sustained trauma survivorship. It is a 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.”
Tez Anderson, Founder Let’s Kick ASS and the person who coined the term.
What is a syndrome?
“…a group of signs and symptoms that occur together and characterize a particular abnormality”.
Webster’s New Collegiate Dictionary, G. & C. Merriam Co., Springfield, MA, 1974.
Signs and Symptoms Which Define ASS
What is PTSD?
A mental health problem that some people develop after experiencing a life-threatening event like combat, a natural disaster, a car accident, or sexual assault.
What is Complex Post-Traumatic Stress Disorder
“Complex post-traumatic stress disorder (C-PTSD) is a disorder that may develop following exposure to an event or series of events of an extreme and prolonged or repetitive nature that is experienced as extremely threatening or horrific and from which escape is difficult or impossible (e.g., torture, slavery, genocide campaigns, prolonged domestic violence, repeated childhood sexual or physical abuse).”
Read more: http://traumadissociation.com/complexptsd
ASS is not PTSD
HIV Long-Term Survivors often say they have “PTSD”. PTSD is the zeitgeist. It is the thing people have heard about. But AIDS Survivor Syndrome is more complicated. Affected individuals often say they have “PTSD” but it is more complicated. It akin to Complex PTSD but still distinct.
Symptoms Shared by Complex PTSD and PTSD
According to Hyland et al (2017), CPTSD shares three main symptoms with PTSD which include:
- Re-experiencing of the trauma in the present (visual/emotional flashbacks; nightmares)
- Avoidance of traumatic reminders
- A persistent sense of threat (increased arousal, hyper-vigilance, startle response)
Additional Symptoms of Complex PTSD
Hyland et al (2017) found that CPTSD differs from PTSD in that it has three additional symptoms relating to Disturbances in Self-Organization (DSO):
- Affective dysregulation (heightened/flattened anger, sadness, joy)
- Negative self-concept (shame, critical of self/others; feeling inferior)
- Disturbed relationships (isolated; feeling different that others; social anxiety)
Additional Symptoms of AIDS Survivor Syndrome
- Fear of unexpected aging and being unprepared
- Feeling forgotten and invisible (social isolation and withdrawal)
- It is not “post”. People are experiencing it now
A Historical Comparison: The “Lost Generation”
The “Lost Generation” was a phrase coined by Gertrude Stein and popularized by Ernest Hemingway to describe the psychosocial after-effects of World War I among survivors. (I’ve heard the generation who lived through the early years of the epidemic as the Lost Generation.)
But compare the mortality stats of two groups:
Mortality among men enrolled in the UK armed forces during WWI from the British Isles: ~12%
Mortality among MSM so far in the MACS:n~49% (among men recruited as positives); 31% (for the entire cohort)
Mechanism for Harm
“The death rate soared. Every Thursday morning we would pick up the BAR at any of the local gay bars and businesses. The obituary section grew to fill two, sometimes three full pages. Every week almost everyone in the neighborhood would read that someone they knew had died. We lost over a thousand people a year, just in San Francisco, every year for over a decade”
Cleve Jones, When We Rise, Hachette Books, New York, 2016, p. 234.
Bay Area Reporter Obituary Pages circa 1980s
“Within the ranks of the activists and throughout the community, people were bitter, exhausted by a decade of misery and death. Every day I thought about dying. I wondered how much more time I had. I wondered how much it would hurt. If I wasn’t going to have a long life, how could I make what time remained worth living?”
Cleve Jones, When We Rise, Hachette Books, New York, 2016, p. 234.
What is the Multicenter AIDS Cohort Study?
- Started in 1983 (Baltimore/DC, Chicago, Pittsburgh, San Francisco, and LA) n=4954
- The initial goal was to understand the spread and natural history of HIV
- Occasional “refreshing” of the cohort to increase the same size and better represent minority men, with a total of 6973 men recruited across all sites
- Participation in the study every 6 months with interviews, physical exams, cognitive testing, and blood collection for biological outcome data
- As of 2013, the mean age of the cohort was 56, with ranges from 20–88; with 83% of the cohort aged 50+. Roughly half of the men (49%) are positive.
- The current focus is on aging in general, aging with HIV and cardiovascular disease.
“Understanding Patterns of Health Aging Among Men Who Have Sex with Men”, R01, NIMHD
Specific Aims:
- To describe changing patterns of increasing and decreasing psychosocial health problems/syndemics among aging MSM in the MACS.
- To describe and characterize resiliencies among aging MSM and to test whether these are protective against psychosocial health problems.
- To determine whether resiliencies protect against the effects of psychosocial health problems/syndemics on increasing HIV viral load trajectories among HIV-positive men.
- Key variables: psychosocial health problems, life history of discrimination, the experience of the AIDS epidemic, resiliency measures, biological outcomes
AIDS-Related Bereavement Among Men in the MACS: Aging and Resiliencies Study
- 27% of survey respondents lost more than 10 close people to AIDS
Men are still grieving for these persons
- 35% of men “still grieve”
- 7% of men “still deeply grieve”
- 3% grieve these losses “nearly every day”
Men anticipated their own mortality earlier in life.
- 49% ≥“agree” that “Because of the HIV epidemic, I never thought I would live as long as I have.”
Items Added to the Aging Questionnaire to Assess ASS
- To what extent over the past 6 months have you been bothered by the following?(Likert scale from never, hardly ever, every so often, fairly frequently, at least once a week, almost every day)
- Feeling depressed
- Feeling isolated
- Feeling anxious
- Trouble sleeping
- Feeling that I don’t have a future
- Nightmares
- Feeling emotionally numb
- Strong feelings of anger
- Feeling threatened
Psychometric Analysis of ASS
- Exploratory factor analysis with V65 (n = 873)
- Conceptual validation with V66
- Confirmatory factor analysis with V66 (n ≈1150)
- Measurement invariance
Summary of Findings
The men in the MACS have been through an epidemic resulting in personal losses exceeding even those of World War I.There is substantial psychological distress among men in the MACS.This affects both HIV-positive and HIV-negative men.
Factor loadings on the ASS scale are strong, and the variance in these items are explained by a single — multiple causalities of the crisis.
This is true for both HIV positive and negative men.
Whether the single item is best explained as ASS or some other candidate psychosocial condition (i.e. depression or PTSD or Complex PTSD) remains an open question.
In the MACS cohort, 27% of the men report they have lost more than ten close people to AIDS.
More than a third of these men are still grieving, 7 percent “still deeply grieve,” and 3
Study participants were asked how frequently in the past six months they had experienced items from a list of nine symptoms of emotional distress.
19.42% said they had been depressed
9.65 % had felt isolated,
6.25% had experienced anxiety
22% said they had experienced three or more of the following symptoms “fairly frequently”: trouble sleeping; nightmares; feeling that they have no future; feeling emotionally numb; experienced strong feelings of anger, or had felt threatened.
Dr. Stall found that there is “substantial psychological distress among men in the MACS” and that this is true for both HIV-positive and HIV-negative men.
He also stressed that the larger number of men who are free of ASS symptoms are a testimony to the multiple resiliencies they these exhibit in responding to the stresses of a historically unique epidemic.
The takeaway message is that the AIDS epidemic dramatically impacted and shaped the lives and experience of a generation of men who survived.
Future Research Agenda: MACS
Conceptual Validation
Is the ASS measure independent of variables such as PTSD and depression?
Does the ASS measure function similarly across different groups (HIV+ and HIV- men; Racial Minorities, Age Cohorts, SES)?
Do HIV+ men who score higher on the ASS measure have worse viral load trajectories over time?
Do resiliencies moderate the effect of ASS on viral load outcomes among HIV-positive men?
ASS Scale From the MACS Study Being Developed
Mark Brennan-Ing, PhD, Senior Research Scientist at the Brookdale Center for Healthy Aging, Hunter College, City University of New York (And a long-time HIV and aging researcher from ACRIA) has started working with Ron Stall and Michael Plankey on the ASS scale from the MACS study.
Specific Aims:
- To describe changing patterns of increasing and decreasing psychosocial health problems/syndemics among aging Gay Men in the MACS.
- To describe and characterize resiliencies among aging MSM and to test whether these are protective against psychosocial health problems.
- To determine whether resiliencies protect against the effects of psychosocial health problems/syndemics on increasing HIV viral load trajectories among HIV-positive men.
Key variables: psychosocial health problems, life history of discrimination, the experience of the AIDS epidemic, resiliency measures, biological outcomes
Need to Focus On Interventions
Dr. Stall stressed a description, or a name is important, but what is needed is a focus on interventions. From the point of intervention development, do we need to have a definitive answer to the question of whether ASS is distinct from PTSD, Complex PTSD?
The biggest question that Dr. Stall’s work poses is what types of interventions can be developed or adapted to treat this syndrome. It is a cohort of men who have survived a historically unique epidemic, and no one knows how their health needs will evolve as they approach old age.
Can we adapt existing interventions and test whether they have a positive effect on men who score high on ASS measures?
Or can we develop interventions from the ground up to test efficacy in providing support and raising levels of health among men who score high on ASS measures?
In other words, by any name, whether is it is ASS or something else, it is more important to find effective interventions.
The Need to Raise Awareness Among Providers and Community
There is also a detrimental lack of awareness of AIDS Survivor Syndrome among most healthcare professionals and AIDS Service Organizations (ASO) who are too young to have experienced the early HIV/AIDS epidemic.
As such, some of those who show symptoms of complex PTSD may not be receiving proper treatment or counseling. This is also an indication of the importance of educating others about the syndrome, as well as the experiences of those who lived through the early epidemic.
The men of the MACS are still likely to surprise us as they age, and may well express constellations of psychosocial health problems that could not have been predicted at the start of the epidemic.
The men of the MACS are likely to be able to teach us a great deal about how to care for future cohorts of people living with HIV infection and as such count as a nationally and internationally important resource in fighting the epidemic.
Public Service Announcement Video
Background on AIDS Survivor Syndrome and the effects of trauma on survivors.
After not dying from AIDS but from surviving it. I could not find much on the trauma of surviving the AIDS epidemic. There was some research but behind paywalls that I could not afford. Most were talking about Post-Traumatic Stress Disorder (PTSD), but what I was going through felt different. Sure, it had elements of PTSD but for one thing, it is not “post” but still going on. I was terrified of aging with HIV, of growing old with a virus I had spent a quarter of a century planning to die from.
Believe me, I struggled with calling it “AIDS Survivor Syndrome” only because the acronym is “ASS”. In a recent Financial Times article they called ASS “provocative” — which I find humorous. To me, ASS does not have a negative connotation. (Suppose it all depends on how one feels about one’s own ass?)
The last thing I wanted to do give us one more diagnosis, as survivors we’d had enough of those. The goal was defeating it and helping others talk about it. In the shower one morning “Let’s Kick ASS” struck me.
Spencer Cox
The real hero of this story is a man named Spencer Cox. He conceived the drug trial protocols for protease inhibitors that quickly turned HIV from being a death sentence into a “chronic manageable illness.” We were Facebook Friends. In December of he went into the hospital and died shortly thereafter.
What emerged online after his death, and later reported in The New York Times was Spenser had stopped taking his medications. Everyone seemed baffled. But it hit me hard. Because I related. At the worst of my confusion, riddled by a fear of aging with HIV, suicide was something I was obsessed with.
Why? Because surviving for decades with HIV takes a toll. Around this time there were several other long-term survivors who took their own lives. Something was going on. I thought I knew what.
I did not know it at the time of his death but Spencer knew too. He had written two papers on the trauma of survival. He started the Medius Institute for Gay Men’s Health. It was concerned with health issues affecting all gay men. He found it impossible to get funding. He could not get anyone else to notice or care what was happening to long-term survivors.
It is my opinion that led to his sense of hopelessness and his decision to stop taking his HIV medications. Surviving AIDS has ramifications.
Download PDF of The Legacy of the Past by Spencer Cox here: http://bit.ly/LegacyofPast
What Really Killed Spencer Cox? New York Times
A piece was written by a friend of Cox after his death
One more thing
Here is an excerpt from the foreword to The AIDS Generation: Stories of Survival and Resilience by David France
“Soldiers returning from Indochina were said to have war trauma. And us? Ours is a condition we know so little about. Some are calling it AIDS Survivors Syndrome, with its unfortunate acronym. Halkitis gives it affirmation for the first time here. He writes: ‘In truth, the gay men of my generation, the AIDS Generation — all of us, HIV-positive or negative, across every race, ethnicity, and culture, from every part of our country, from stockbroker to dancer to a salesman — were robbed of a life filled with youthful frivolity, with endless optimism and hope. And as middle-aged men, we are as a group traumatized and fatigued from 30 years of war.’”
Halkitis, Perry N.. The AIDS Generation: Stories of Survival and Resilience Oxford University Press.
I’m happy that people are starting to take notice of AIDS Survivor Syndrome. That Ron Stall took it upon himself to do the research. There will be more, but for now, I want to thank Ron and his team and focus my attention on raising awareness about ASS and finding an intervention to help those who need it most.
The Complete Set of Slides
The end.
Learn more and connect with Let’s Kick ASS:
Twitter: LetsKickASS_hiv or the full url: https://twitter.com/letskickass_hiv
Facebook: Facebook.com/AIDSSurvivorSyndrome
LinkedIn:https://www.linkedin.com/in/tezanderson/
Join the new closed Facebook group, the HIV Long-Term Survivors League. It’s moderated and intended to be a safe place for survivors to talk among themselves and find community. https://www.facebook.com/groups/HLTSurvivorsLeague/
Yours in resilience,
Tez Anderson
