Community has always been at the heart of the fight against acquired immunodeficiency syndrome, or AIDS, the advanced stage of an HIV infection.
When the disease was first reported in 1981, most mainstream government, medical and news organizations failed to discuss the issue and to provide solutions to the gay community, which was being disproportionately impacted.
In the absence of institutional help, activists and community members took matters into their own hands, distributing informational pamphlets, forming buddy systems, organizing hotlines, cooking food or just sitting by the bedsides of friends and strangers in the hospital dying of the disease.
That sense of community still remains among those who have survived the AIDS epidemic, particularly within a local group called Let’s Kick ASS Palm Springs, or LKAPS.
The last word in the group’s name stands for AIDS Survivor Syndrome, a descriptor popularized by Tez Anderson, a co-founder of the original Let’s Kick ASS organization in 2012. Anderson says AIDS Survivor Syndrome is a form of trauma that people who survived the AIDS epidemic suffer from, which leads to anxiety, depression and social withdrawal.
The Palm Springs chapter of the organization began informally about nine years ago, and has since has hosted a variety of social events and group discussions to connect fellow long-term survivors of the AIDS epidemic, including people living with HIV who are aging.
“The idea is to get people off the couch, back out into the world and connecting with other people,” said Jonathan Goldman, a member of the group’s social committee.
More than half of the people who live with HIV in the U.S. are over the age of 50. The goal of LKAPS is to stave off the loneliness that has always been pervasive in older communities and has increased in recent years, leading to health risks.
And loneliness, Anderson believes, is especially acute among long-term survivors who witnessed the deaths of friends, neighbors and loved ones throughout the 1980s.
Roundtable helps survivors
It took four years after the first CDC report on the disease in 1981 for then-President Ronald Reagan to even publicly mention the word AIDS. In 1982, when Larry Speakes, Reagan’s press secretary, was asked about the disease, he responded with jokes and laughter.
If mainstream news outlets or government officials discussed AIDS, it was often information that spread fear and stigma about the disease and people infected with it. (One notable outlier is local Hank Plante, a former anchor and reporter for KPIX in San Francisco. Plante was one of the first openly gay television reporters, and covered the disease extensively throughout the 1980s.)
Since it was first discovered, AIDS has killed more than 700,000 people in the U.S. Now, effective and lifelong treatment exists, known as antiretroviral therapy, or ART, and is given to people living with HIV that can control the disease. So far, five people with HIV, two of whom have lived in Palm Springs, have gone into remission from the disease.
Many members of the LKAPS group were diagnosed with AIDS before a treatment, let alone a possible cure, existed.
“I never expected to be this old,” Goldman said. He still remembers when he first tested positive in 1988. His partner died two years later. “Then, I couldn’t get ahold of my best friend, and when I finally did, he was in the hospital dying.”
Meanwhile, Alex Snell, the coordinator of the group’s roundtable discussions, is younger than many LKAPS members and said he can’t imagine “how horrible it would be to be told at 25 to get your affairs in order because you’re not going to live.”
“In the 1980s, it was a death sentence,” he said.
But those who were diagnosed early did live. They lived for decades longer than they thought they would, but are now grappling with survivor’s guilt, being immunocompromised, side effects from ART, and other diseases they developed due to their older age.
The LKAPS roundtable discussions began last year, and were created as an opportunity for members to connect more deeply outside of the regular potlucks, coffee outings and bowling nights that dot the LKAPS calendar.
Snell said he hoped the group would be a meaningful and empowering way for people to share their feelings. “People have formed friendships and meaningful relationships that get them out of the house,” he said.
LKAPS also unites people from all different walks of life; the president of the group, Jax Kelly, won Mr. Palm Springs Leather in 2018, Goldman was a contestant on Wheel of Fortune in 2005 (and won a cool $50,000, plus a Caribbean vacation), and Snell got his degree in social work and began his second career studying the need for social spaces for HIV survivors.
Members of the group might be from all over the country, but they connect on a deep level, despite their differences. LKAPS welcomes people of all genders and experiences.
“People who have been recently diagnosed ask: ‘Do I belong here?’” Goldman said. “And we tell them that LKAPS is for everybody, we’re inclusive.”