Survivors from the HIV/AIDS epidemic of the 1980s and 1990s are accustomed to being told they dodged a bullet. They know they are fortunate to be alive, all these decades later.
But on the 35th anniversary of the first public scientific notice of a rare and mysterious pneumonia afflicting five young gay men in Los Angeles, those who made it through the early years of panic, confusion and grief say it’s not as if they can ever feel the disease is all in the past.
It’s more like they are veterans of a war, they say, living with that bullet still inside them.
Today, more than half of the 1.25 million Americans infected by the human immune deficiency virus are 50 and older; in just four years, that share should reach 70 percent. As the longevity boom collides with a resurgence of HIV diagnoses nationwide, scientists are just now learning how this persistent, incurable virus — along with the powerful drugs that keep it at bay — takes a toll on the body that makes natural aging look like a gift.
“A 60-year-old with HIV,” says Scott George, director of advancement for the Community AIDS Network in Sarasota, “really has the body of a 75-year-old. And it’s devastating.”
If caught in time and treated appropriately, the retrovirus that could develop into a fatal case of acquired immune deficiency syndrome rarely gets that far anymore. But like other chronic illnesses and the pharmaceutical regimens they entail, HIV accelerates the aging process.
“Treating HIV disease does not necessarily restore health,” says Steven Deeks of the AIDS Research Institute at the University of California San Francisco.
Physicians and public health workers worry that, because an HIV diagnosis is no longer a virtual death sentence, people in at-risk populations don’t fully consider the downsides of unsafe sex and drug use.
Jack Cox has lived with the virus for 31 years. At 76, the Sarasota resident is part of the first generational cohort to grow old with HIV, and he would not recommend it to anyone.
“You still have the flu all the time,” he says with a wry smile. “I have to work really hard to stay positive, because that part of me that was life-affirming became life-threatening.”
After his partner fell ill, Cox tested positive for the virus. But he was one of the fortunate few who remained symptom-free.
He embarked on his own therapeutic regimen: Chinese medicine and a network of loving friends. It took 11 years for his T-cell count to fall below the diagnostic threshold of 200. By this time, 1996, he had avoided the toxic doses of early experimental medications.
Cox, who has endured bouts of depression and heart disease, adds that emotional and spiritual support are also important. Every day, before swallowing the many pills he needs to stay alive, he arranges them in a circle, as a sort of ceremonial ritual.
At a 1998 Project Inform meeting in San Francisco where he learned that “a bunch of us would live a long time,” Cox got his first real inkling that old age would be a possibility for him. Participants were among the first to learn that the latest mixture of drug therapies actually worked, and people with the disease no longer had to die.
“I cried when I heard that, because that was what I had been thinking,” he says simply.
The financial burden of fighting the virus is enormous, especially for survivors who abandoned or switched careers because of their diagnosis. According to the latest research, it costs more than $23,000 per year to keep the average HIV-positive American’s immune system in working order.
This is one reason why the Community AIDS Network’s George is so frustrated when he meets prospective donors who say, “But I thought the disease has been cured.”
It is also the reason behind CAN’s phenomenal growth spurt. The nonprofit education and treatment center, founded in 1991, has gone from 23 to 73 employees in the last 18 months and is expanding its headquarters.
It started, George says, when the organization’s financial officer — who has since retired — discovered a fairly obscure federal program that allows a nonprofit clinic to buy drugs from the manufacturers at cost. This saved CAN from going under, and when the word spread, other Florida clinics with fragile finances asked the Sarasota group to take them over. The result is an HIV support network that now stretches from Miami to Jacksonville.
George recently formed a support group for HIV-positive men, to complement the network’s long-standing group for women. Most of the 20 or so men who attend are over 50, he says, but even those who are openly gay prefer to keep their health status private.
“You can’t have a normal life; you live with this thing in the back of your head, no matter what happens,” he says. “It’s a horrible secret to hide. People will judge you. Stigma is one of the biggest things.”
Cox, who came out as gay in 1970 along with two other men at Montana State University, feels no need for secrecy about his years of experience with HIV.
“I’m different,” he says with a shrug. “I’m gay, so I grew up different.
“But I have been lethal, and I haven’t recovered from that,” he adds reflectively. “Not that I killed anybody with it. But I stopped being a creator and became a killer, in some way, during that era.”
This is an Associated Press member exchange story.