40 Years of AIDS—A Call To Action For Long Term Survivors

It’s been 40 years since the U.S. Centers for Disease Control and Prevention (CDC) published its Morbidity and Mortality Weekly Report that documented cases of pneumocystis carinii pneumonia (PCP) in five young, “previously healthy” men. It was the first official report of the disease that would come to be known as AIDS.

There have been great strides in prevention and treatment, the two most remarkable being the advent of PrEP which can prevent transmission and of U=U “undetectable equals untransmittable.” Specifically, it means that people living with HIV who have an undetectable level of virus in their blood due to treatment are unable to transmit the virus to others.

June 5th is also is also HIV Long-Term Survivors Awareness Day (HLTSAD). Tez Anderson, a Long Term Survivor with HIV, and the founder of Let’s Kick ASS (AIDS Survivor Syndrome), says, “We stand a precipice. We can elevate the goals of the Ending The Epidemic to include improved Quality of Life, it is more than treating the virus, which is paramount, but so is increased focus on mental wellbeing. It is beyond surviving toward a mindset of thriving.”

Anderson (in the photo above) also notes it is a pivotal moment as he articulates in his manifesto, “AIDS at 40: Envisioning a Future We Never Imagined.”

Between now and September 5, 2021, we will compile your priorities, and together we’ll mobilize for change.

Send an email to Action@LetsKickASS.org in the “About” section include #HIVsurvivorsAction

“On September 18, 2021,” HIV and Aging Awareness Day, “we’ll begin working on tangible calls to action to ensure our needs are addressed. This is about creating a grassroots agenda and making that plan is implemented.”

“We’ve waited long enough,” Anderson writes “People living with HIV and AIDS deserve to age with dignity.”

Anderson was able to leverage his voice and efforts to the cause because of his past. In what seems like a lifetime ago, he served as a creative consultant 1994’s PBS miniseries Tales of the City. In addition he and Tales‘ author, Armistead Maupin were a couple at the time and a major character in the series was based on Anderson. In 1990 Maupin and Anderson were featured in People magazine as a serodiscordant couple — one of the first to speak publicly.

In a profile in HIV Plus Magazine in 2016 Anderson said the show made invaluable contributions to visibility, LGBT visibility, which was critical to him, since as a gay rights activist “for decades my agenda was visibility.”

Anderson founded Let’s Kick ASS  and helped initiate HIV Long-Term Survivors Awareness Day  in 2014 after he made the connection between the post traumatic stress syndrome (PTSD) experienced by soldiers returning from the concurrent wars in Iraq and Afghanistan and what he and his friends who had survived past the date they were told they would die. Anderson realized, “I was in the troughs of complex post-traumatic stress from years planning to die and not planning to live. The big crisis point for me came when I began wrapping my brain around the idea that I was not dying from AIDS, but living with it. I remember thinking, ‘Oh damn you might be an old man with HIV.’ It was the one thing I had not imagined and that sent me into a tailspin of depression, anxiety, and panic.”

Photo above: An AIDS quilt at the Yuerba Buena Center, San Francisco. California. Photograph: Alison Wright/Corbis via Getty Images

To mark the occasion, the National AIDS Memorial invites the nation to honor the more than 700,000 lives lost to AIDS, the survivors and the heroes, during the past four decades. During a powerful LiveStream ceremony, leaders of the AIDS movement will provide touching tributes of activism, resilience, hope and remembrance.”

Special guests will include high profile figures like House Speaker Nancy Pelosi; Congresswoman Barbara Lee; Dr. Anthony Fauci, M.D., Director, NIAID and California Governor Gavin Newsom.  Special Guests will include former U.S. Ambassador James Hormel; former UNICEF Executive Director Ann Veneman; National AIDS Memorial Grove Co-Founder, Alice Russell-Shapiro as well as Long-term Survivors: John Cunningham, Chief Executive Officer, National AIDS Memorial; AIDS Memorial Quilt Co-Founder Cleve Jones; Lonnie Payne, National AIDS Memorial Board Member.
‍The event will also feature, Young Leaders in Today’s Movement: A Spoken Word performance by Ima Diawara, Mary Bowman Arts in Activism Awardee and Antwan Matthews, Pedro Zamora Scholar and National AIDS Memorial Board Member.


View this post on Instagram


A post shared by THE AIDS MEMORIAL (@theaidsmemorial)

Above: Activist and scholar Sarah Schulman published LET THE RECORD SHOW: A Political History of ACT UP New York, 1987-1993 earlier this year

From the AIDS Memorial website: “Starting at noon, special guests and visitors will be able to stroll through the Grove to see the thousands of names engraved within the memorial and experience a powerful 40-Block display of the AIDS Memorial Quilt. There will be a special performance from members of the San Francisco Gay Men’s Chorus at 12 noon. Throughout the day, visitors will be able to read the names of loved ones lost to AIDS, which will be softly amplified throughout the Grove and leave personal tributes on Quilt signature panels. This moving observance brings together the power of the Quilt and the beauty of the Grove, together to reflect on four decades of activism, resilience, hope, and remembrance.”


View this post on Instagram


A post shared by Mark S. King (@mark.s.king)

“Survival is not a contest. Besides, that’s a game that none of us are going to win. Life is about what you are doing with the time you have, and using it to help someone else.” HIV Long-Term Survivors Awareness Day June 5 #HIV#40YearsOfHIV#ThisIs60  by Mark S. King founder of My Fabulous Disease and creator of the PSA from last year below.

“The issues our nation faced in the past year,” Anderson notes, “a raging pandemic with hundreds of thousands of lives lost, social injustice, health inequity, stigma, bigotry and fear – are also the issues faced throughout four decades of the AIDS pandemic. It is why today, we have a National AIDS Memorial And why 333,000 living with HIV have been HIV-positive since 1996 and earlier.”

The time, to envision both a present and a future, that Anderson and all Long Term Survivors could not previously have imagined, is now.

Read the blog post and  to find up to the minute information follow Let’s Kick Ass on Facebook, Twitter, and Instagram. You can also download documents for creating your priorities for the Call-to-Action AIDS at 40: Envisioning a Future We Never Imagined.”