For five years now June 5 has been HIV Long-Term Survivors Day by the advocacy group Let’s Kick ASS (AIDS Survivor Syndrome) It estimates there are some 34,000 long-term survivors in the U.S who face challenges not shared by those diagnosed after 1996.
In part because they spent years taking early drugs that were either ineffective or harmful, many continue to experience many physical symptoms. Emotionally, they still suffer from years of watching their friends die and expecting they’d be next.
Isolated by illness, stigma and the inability to work, but many dealt with a terrifying diagnosis at a time when doctors had little hope to offer.
Sean McKenna, 55, was diagnosed with HIV in 1992. Today he takes 22 pills a day and deals with diarrhea, joint pain, HPV with bouts of pneumocystis pneumonia and other HIV-related complications that have killed many of his peers.
In ’96, McKenna survived his second PCP hospitalization and went on antiretroviral drugs, known as ARTs. His condition was no longer life-threatening, but he still had persistent symptoms, some debilitating, which meant he couldn’t really hold down a full-time job. He’s been on disability, unable to work, for over 20 years.
Many of his friends had either passed away or were too sick to socialize, and without a job, he’d often spend weeks or months without any meaningful social interactions.
McKenna says he attended about eight funerals a month, during the worst of the epidemic. Now with new meds and a new generation, he says the gay community has moved on to other issues. He told HuffPost,
“In the beginning, people would check on me, but around the late ’90s, people stopped dying from HIV like they used to. And then the calls and visits stopped. It was hell to watch people die in the ’80s, but my personal hell was when long-term survivors were forgotten.”
McKenna got a wakeup call in 2012 when HIV activist Spencer Cox died after he stopped taking his meds. Cox suffered from what advocates call “pill fatigue.” When long-term survivors lose the motivation to stay on their meds, generally because of being depressed.
He felt obligated to speak up for long-term survivors, but he said it wasn’t easy.
“People didn’t want to pay attention to me at first. They wanted to think ARTs had solved everything. It was like, you’re alive, isn’t that enough?”
Even in NYC, there were barely any services for long-term survivors. McKenna urged GMHC (Gay Men’s Health Crisis) to pay more attention to the needs of long-term survivors after three years of lobbying, in 2015 they implemented a buddy program.
Susan Rowley, who runs the program, said it took some time to adjust programming to meet the specific needs of that community,
“They’re still dealing with the stigma of HIV, societal ageism, and the increasingly challenging physical and medical conditions that come with age. We know that face-to-face meetings in a social setting or even a weekly phone call can be a significant help.”
The program currently has 28 survivors, with two on the waiting list.
McKenna said he tries to explain to younger men that PrEP, the HIV prevention drug that’s become widely used in the last few years and encouraged many gay men to stop using condoms, doesn’t protect against other sexually transmitted diseases. He cautions that unprotected sex still carries risk ― a message that often falls on deaf ears.
In the 80s McKenna volunteered to pass out condoms at a Gay Pride parade but it did NOT go well…
“The first person I gave one to threw it back at me, spit in my face and accused me of slut-shaming. I just want young people today to be safe. They don’t realize ― my generation, we were the guinea pigs, we put faith in bad drugs that failed us.”
After his success with the buddy program, McKennna says he’s not finished just yet.
“No one ever asks about my future. I don’t know how much longer I’ll live, but my future is not sealed.”
No one knows how much longer they’ll live, so in that way we’re all in the same boat and looking forward to a new day, is the best any of us can do. McKenna is inspired to give, and inspiring a new generation to not forget their recent history and ones who lost the battle long ago.
(Photo, Sean McKenna; via Huffpost)