What is AIDS Survivor Syndrome and Why Do You Need to Know?

Exterior of ICC, Home of #AIDS2016 at Sunset.

Let’s Kick ASS

August 6, 2016

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Somewhere between Cape Town, South Africa and San Francisco on Emirates Airlines Business Class! Yeah, your thinking how did you afford business class? I didn’t.

When I arrived at the gate at Dubai after an 8-hour flight from Cape Town I was dreading a 16-hour coach flight home (and more than a little sad that I was leaving Cape Town. Another story for another time.) As I was boarding with my economy seat ticket she tore it up. Printed a new one and said, “Mr. Anderson we’ve upgraded you to business class.”

I grabbed the ticket and headed upstairs on the A777 where the seats fully recline, there is a lounge and bar and the bathrooms have wooden seats and windows. It was extraordinary. THIS is the way to fly.

It is all part of the magic of #AIDS2016, the 21st International AIDS Conference where I presented a poster/abstract on AIDS Survivor Syndrome and participated on panel discussion entitled Ageism, HIV and Aging.

I was lucky to be presenting at both with my brilliant and beautiful colleague Hanna Tessema who works for ACRIA.

I was also damned lucky to have a generous friend in Paul Tew, who is be a marketing and public relations rock star, who made my wish come true. He created a poster that stood out in sea of scientific-looking posters that are a staple of these conferences. It generated attention and created buzz from the moment I hung it. As a result, I had some amazing conversations with people way smarter than me and got to talk about interventions (my new passion and program.)

I also lucked out with a primo spot right at the top of the elevator. It was the first thing attendees saw when they entered the posters section.

But it was that sort of trip. It felt charmed from beginning to the end, right down to an upgrade as I departed for San Francisco.

What is AIDS Survivor Syndrome and Why Do You Need to Know?

 

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. WE MUST ADDRESS IT.

There are many of us who are living with AIDS for 20 and 30 years not simply 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 been through.

What I’m 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 succeed 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.

Me doing what I do…

Background

· Over 4.2 million people living with HIV worldwide are aged over age 50. There are 1.2 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 prior to the availability of Highly Active Antiretroviral Therapy (HAART) in 1996. It is likely that that percentage will apply nationally. We do not have those statics yet.

· 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 early medications also exacted a huge 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 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 a “syndemic” of psychosocial health problems that exists on a spectrum. It varies by degrees of intensity and it affects HIV Long-Term Survivors differently at different times. It not a linear phenomenon.

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.

Conclusions

· Kicking AIDS Survivor Syndrome requires interventions that focus on strengthening resiliencies

· Beyond mere survival we have to changing 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 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 excludes them from participating in community when they want to.

· Helping survivors think long-term and to see aging as something to embrace not a barrier or limitation.

To learn more us please visit: LetsKickASS.org

You can read our latest writing at: www.LetsKickASS.hiv 

Follow us on Facebook: https://www.facebook.com/AIDSSurvivorSyndrome/ 

Twitter: @LetsKickASS_org & @HIVSurvivorsinstagram.com/letskickass 

Thank you,Tez Anderson
Founder

Twitter// @TezAnderson