AIDS Survivor Syndrome 01
AIDS Survivor Syndrome 01

Today Is the 36th Anniversary of AIDS, But Have We Forgotten the Epidemic’s Survivors?

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Today marks the 36th anniversary of when the Centers for Disease Control spoke openly about five young gay men who died of a strange pneumonia from a sickness that would later be known as gay-related immune deficiency (GRID) and then acquired immune deficiency syndrome (AIDS). Today is also HIV Long-Term Survivors Awareness Day, a day of commemoration started by a group called Let’s Kick ASS (ASS stands for AIDS Survivor Syndrome), a day when we recognize the challenges still faced by those who survived the epidemic’s worst years.

Remembering the survivors of the AIDS epidemic

Though the introduction of protease inhibitors in 1996 helped reduce AIDS-related deaths, it also left behind a generation of emotionally scarred survivors who had witnessed a decade and a half of pain and death.

Let’s Kick ASS has emerged to help these survivors reclaim their lives and to help raise awareness of HIV Long-Term Survivors (HLTS) — people who were HIV-positive in 1996 or prior years — and other HIV-negative survivors.

Here’s a video from Let’s Kick ASS of survivors talking about the struggles of ASS and what the organization does:

In the video, one of the survivors says, “[The introduction of protease inhibitors in 1996] sounds like it should be one of those ‘Oh, be grateful and have a party! You’re going to live!’ It was the exact opposite. It sent me into a tailspin.”

Another says, “You cannot watch that many people die, you cannot watch the injustice that we watched and not have that effect you.”

What is AIDS Survivor Syndrome?

The nonstop trauma of AIDS’ worst years made it difficult for survivors to move on afterwards. Approximately 50% of survivors from that era deal with depression, suicidal ideation, anxiety or lack of future orientation (that is, not being able to imagine life as an older person).

As such, ASS is multi-faceted: It is physical because of the long-term effects of depression, anxiety and HIV on the body; emotional because of the psychological hardships they continue to endure; and environmental both because history has largely ignored AIDS survivors and because contemporary gay spaces provide few places for them to connect and process their pain.

ASS gets made worse by isolation, ageism, HIV stigma, a lack of understanding about how ASS differs from post-traumatic stress disorder (PTSD), geriatric poverty and a lack of access to affordable healthcare and housing. These issues particularly effect people of color as there’s a higher death rate for gay and bi men of color and higher rates of poverty as they grow older.

The mission of Let’s Kick ASS

Let’s Kick ASS is a national grassroots movement of AIDS survivors, both HIV-positive and negative. It helps connect AIDS survivors and disrupt ASS by providing online and offline peer and community support, celebrating survivors (just as society would celebrate survivors of other historic battles and atrocities), helping them overcome the trauma of the AIDS epidemic (some of which have been re-triggered by the Trump administration’s Reagan-esque homophobia and promise to slash healthcare) and giving them strategies and outlooks to meet the health and financial challenges of aging into years that they never though they’d see.

Since its founding in 2013, Let’s Kick ASS has expanded from San Francisco (where it was the only organization for AIDS survivors) to chapters in Portland,Palm Springs, Austin and elsewhere.

Looking towards a brighter future for AIDS survivors

2017 marks the 21st anniversary of Highly Active Antiretroviral Therapy (HAART), the first available protease inhibitors that changed HIV from a death sentence to a chronic but manageable illness. In commemoration of that anniversary, Let’s Kick ASS released a declaration which states:

It has been over thirty years since the Denver Principles began the self-empowerment movement for people living with HIV, but HLTS now find our voices muted. Our issues are sidelined by the agencies we helped to form. Conferences devoted to HIV are focused on newer, trendier topics while relegating long-term survivors to the sidelines and affinity sessions off the main stage.

The declaration calls for more research into the challenges facing HLTS and people with ASS. It also encourages HLTS and people with ASS to see their aging as a positive development, to share their stories so they won’t be forgotten, to engage in intergenerational dialogue for mentoring young people born after 1996, to demand the seat at the table of HIV and AIDS organizations and to help ensure that “the lives and experiences of those longest affected by the epidemic” are prioritized rather than minimized or ignored.

Let’s Kick ASS’ goals are important to remember as we continue into the fourth decade of the HIV epidemic. These days, half the people living with HIV are age 50 and older and by 2020, that number will be 70%. We should honor those who helped ensure that HIV became a manageable illness and those who cared for our sickest and most vulnerable siblings during the epidemic’s earliest days.

(Featured image by AMR Image via iStock Photography)