June 5 is recognized as HIV Long-Term Survivor Awareness Day. It was on this day in 1981 that the U.S. Centers for Disease Control and Prevention (CDC) published its first official report on cases of a rare lung infection in five young gay men in Los Angeles. This would become known as the start of the U.S. AIDS epidemic.
Nearly 40 years later, a legacy of community activism, the advent of effective and less toxic antiretroviral treatments, and recent advances in prevention through pre-exposure prophylaxis (PrEP), have shifted HIV from a death sentence to a chronic, manageable illness. Since people are living long and healthy lives with HIV, they’re doing something they never thought they’d get to do during the height of the AIDS crisis: grow into senior citizenship.
But for the generation of long-term survivors who came of age during the AIDS era in Denver, there is still a profound sense of trauma associated with having watched loved ones die while they somehow survived it all.
“I used to be scared to answer the phone,” says Donaciano Martínez, a soft-spoken man who is now 74, from his home in central Denver. Martínez came to Denver in 1975 from Colorado Springs, in time to witness the virus rampage through communities of young and otherwise healthy gay men. “It was a somber time, and today, it feels like we’ve been erased,” says Martínez. “The perception is that HIV is a thing of the past.”
Long-term survivors are commonly defined as anyone diagnosed prior to 1996, the year when access to highly active antiretroviral therapies or HAART (a customized combination of different medicines) became widely available. But some organizations define survivors as anyone who has been living with HIV for more than 10 years, even after 1996—something that these powerful drugs have made possible. Being a survivor also means living through a brutal epidemic that, while mitigated by scientific advances, remains ongoing.
According to AIDSVu, a project from Emory University’s Rollins School of Public Health that seeks to make HIV-related data accessible, there were more than 10,000 people living with HIV in the Denver metro area as of 2018, with approximately 300 new diagnoses each year. Frank England, who is open about his HIV status, shared that he and his partner Sam Brennan have both lost previous lovers to AIDS. When Brennan’s former partner Kevin Sheehan—who passed away in 2011 at age 57—was diagnosed in 1994, the only options were experimental drugs. While treatment is more sophisticated today, England’s medication would cost over $4,000 a month if paid for out of pocket. The Affordable Care Act and Medicaid expansion have, since 2014, been critical in filling coverage gaps and costs associated with HIV care and issues related to aging in general.
HIV-negative partners, friends, and health care workers who provided support and service to those who died in the earliest days of the epidemic are also important to remember. For decades, many have suffered from what researchers call AIDS Survivor Syndrome, a term that describes the specific physical, psychological, and emotional symptoms experienced by those who lived through intense peak years of the epidemic. The grief is compounded for survivors who never imagined that they’d bury their community only to stay alive themselves.
For so many, it was funeral procession after funeral procession. “I lost 79 friends and lovers,” says Daniel Renner, now in his mid-60s. He’d moved to Denver in the early 1990’s from Seattle to act as dean for the education center at the Denver Center for the Performing Arts. “In some ways it seems like a long time ago, but the feeling is evergreen. I still wake up in the middle of the night remembering an entire generation lost.”
For others, it was the regular anxiety of a blood screening. “I used to use a fake name at Denver Health to get tested, and they allowed us to be anonymous,” says Brennan, reflecting on the worry he felt during HIV screenings. “They couldn’t give information over the phone, so I’d have to go back in to get my results, which were thankfully always negative, but I always wondered when I would find out there was something ‘wrong’ with me.”
England recalls the heavy toll stigma took on his well-being. “My own brother wouldn’t share food with me,” England says. “If I dipped something into barbecue sauce, he wouldn’t touch it.”
Brennan and England want people to be educated when it comes to HIV and other primarily sexually transmitted infections (STIs). “STIs are on the rise in the U.S.,” England says, referring to recent CDC data that also align with findings published in the Journal of American Medicine Association, which saw an increased risk of sexually transmitted infections among gay men on PrEP. Both men emphasized that while HIV is no longer the death sentence it once was, anyone who is sexually active needs to pay attention to their overall sexual health. “But, nobody ever contracted an STI from barbecue sauce,” England says.
Another gay man in his late 60s, who asked to remain anonymous, said that he wants younger generations to think about how AIDS changed the texture of what it meant to be a gay man. “I’m glad they don’t have to go through what we went through,” he says. “I still want them to try and understand it.”
Despite the loss, guilt, and stigma they’ve each endured, Martínez, Brennan, Renner, and England have all found something most elders have: resilience. And although youth is fun, some things just get better with age.
Renner looks back on his glory days, when youth was valued above all else, and recalls thinking how “dismal” life would be after 30. But after those turbulent decades, he sees the other side of the coin. “I learned the value of living a life, so that the people who were lost to the AIDS crises did not die in vain,” he says.
That value for Renner came with another responsibility to those of his lost generation: “I can tell the stories nobody else can tell.”
(Read more: Colorado’s Ongoing Fight to End HIV)