For H.I.V. Survivors, a Feeling of Weary Déjà Vu

For H.I.V. Survivors, a Feeling of Weary Déjà Vu

Three weeks ago, a spring breaker in Miami became a symbol of Gen Z denialism when he spoke to CBS News and said that coronavirus wasn’t going to get in the way of his partying.

Outrage was swift, but one person who felt a touch of recognition was Peter Staley, one of the country’s most respected AIDS activists.

Mr. Staley, 59, remembers what it was to be young and dumb.

In the summer of 1983, shortly after graduating from college, Mr. Staley moved to New York City and began inching his way out of the closet. In the East Village, hanging out at places like Boy Bar, he heard in “this abstract rumor-mill way” of a plague that was killing gay men.

“My first instinct was like that kid on the beach,” Mr. Staley said. “There was this whole thing of, ‘I’m hearing it’s only happening to the older gays and the ones who slept with hundreds of guys.’ It was so easy to shrug off.”

That summer, Mr. Staley got infected. Over the next two decades, lovers and close friends died.

When I spoke to Mr. Staley in late March, he cautioned against drawing a false equivalence between H.I.V. and the new coronavirus, which in his estimation are more dissimilar than they are alike.

H.I.V., he pointed out, was harder to transmit than the coronavirus, slower to wreak havoc on those infected as AIDS, and (until anti-retrovirals went to market in 1996, some 15 years after the disease began seeping into public consciousness) far more likely to be deadly than Covid-19.

Moreover, the disastrous inaction of the federal government to AIDS for more than half a decade was largely the result of bigotry toward those most commonly infected: namely, gay men and IV drug users.

Still, Mr. Staley said, “there is no denying that for me and for other long-term survivors of the AIDS crisis I know, Covid-19 is stirring up a lot. To the extent that all of us from those years have some version of PTSD, all of that is flooding back.”

The biggest similarity, in his view, has been “politicians not immediately deferring to expert scientific opinion. That, on very different deadlines, has been just as deadly, helping to drive this pandemic as effectively as during the early years of the AIDS crisis.”

And although matinee idols, right-wing politicians and pink-haired divas are publicly disclosing their Covid-19 diagnoses, it has been clear to a number of AIDS activists that despite what Madonna or Gov. Andrew M. Cuomo might say, Covid-19 is no equalizer.

“Pandemics never hit fairly,” said David France, 60, the director of the 2012 Oscar-nominated documentary “How to Survive a Plague.” “While we now have what appears on its face to be a more democratic plague that isn’t confined mostly to a despised population, it has still been most heavily concentrated in the major urban areas, which is blue America, in neighborhoods that are filled with people who are not rich and are often black or brown.”

Covid-19’s disproportionate ability to kill the poor, the uninsured and the elderly has also played into disheartening arguments against reacting aggressively.

That has enraged a number of H.I.V. survivors who have reached senior citizenship.

“During AIDS, I was disposable because I’m a faggot. Now I’m disposable because I’m a fogie,” said Cleve Jones, 65, who got into activism during the 1970s as a protegé of Harvey Milk, the first openly gay elected official in California.

And there are other reasons for a feeling of déjà vu.

In 1984, a 44-year-old Dr. Anthony Fauci oversaw the government’s response to the AIDS crisis as the director of the National Institute of Allergy and Infectious Diseases (NIAID). Today, a 79-year-old Dr. Fauci is the director of NIAID overseeing the coronavirus response. And throughout, his calm demeanor and attempt to float above politics has been a source of heated debate among AIDS activists.

Mr. Staley said that Dr. Fauci’s ability to translate science into layman’s terms make him perfectly suited to this moment.

“He’s been one of the only comforting things about all these White House briefings,” he said. “His ability to not get thrown out of the room is something we should all be thankful for.”

Mr. Jones lamented the “surreal” way that Dr. Fauci has nodded his head in news conferences while President Trump “blathers on.”

It’s unclear whether some of the lessons Mr. Staley and Dr. Fauci learned during the AIDS crisis will be heeded by the population at large.

Act Up, the era-defining AIDS organization founded by Larry Kramer in 1987, made civil disobedience an essential part of its sales pitch.

One of the organization’s biggest goals was speeding up access to experimental drugs, and the efforts of its members to accomplish this included marches on Washington and chaining themselves to the balcony of the New York Stock Exchange in an effort to bring down the price of the AIDS drug AZT. A number of Act Up’s members had helped get the drug to market before it had been fully tested for toxicity.

The argument made was that with people dying, there was no time for placebo studies and bureaucracy. Many came to regret this haste.

“Later, we learned it could be effective in combination with other drugs, but a huge number of the people who took it as recommended during the Reagan years died,” Mr. Jones said.

“I was handed AZT and told to take 12 pills,” said the writer Hal Rubenstein. “I said, ‘You’re handing me poison, it’s going to kill me before the disease.’” He regards the decision to turn it down as the thing that saved his life.

That was part of why Mr. Rubenstein, Mr. Jones and Mr. Staley have all been horrified to see President Trump repeatedly tout the antimalarial drug hydroxychloroquine as a treatment for Covid-19, since the disease resolves naturally in the vast majority of cases and more research is needed on hydroxychloroquine’s efficacy in coronavirus patients.

“It’s just totally irresponsible,” Mr. Jones said.

Another difficult thing about the coronavirus for AIDS activists has been the difficulty of assembling publicly to protest the United States health care system.

As Eric Sawyer and Ann Northrop, two other veteran AIDS activists, pointed out, protest during the AIDS crisis was not solely about fomenting social and political change.

“Act Up,” said Mr. Sawyer, 66, “was young virile men dressed in Doc Martens, fitted jeans and black leather jackets who were marching in the streets, taking over buildings, spray-painting sidewalks and disrupting government. It was sexy and empowering putting boots on the streets and standing up to people in power. That gave people hope, something to belong to, and a way to rally around and channel anger and grief.”

Ms. Northrop, who is 71, said: “Now we’re in a situation where we are practically forbidden from having physical contact with anyone, and that’s a heartbreaker. There’s a legitimate reason for it, but it’s a real tragedy.”

Still, people are finding workarounds.

Rise and Resist, an anti-Trump group with many members also in Act Up, has been staging six-feet-apart demonstrations about government inaction around the coronavirus.

Clad in apocalyptic “Blade Runner” meets “Rhythm Nation” gear, they have held up signs that said, “Trump Lies, People Die,” not unlike the “Silence = Death” tag phrase of Act Up.

Elton John, who has raised $450 million for AIDS research and prevention campaigns through his Elton John AIDS Foundation, organized a virtual benefit for coronavirus relief that aired on Fox on March 29.

Billie Eilish and Mariah Carey performed from their homes. The event raised around $8 million, according to Variety.

Mr. France, the director, has picked the coronavirus as the subject of his next documentary.

And a number of AIDS activists interviewed for this article said their experiences facing the possibility of death decades ago taught them valuable lessons about how to stay sane and healthy during the current crisis.

Mr. Rubenstein, 69, said he learned from having H.I.V. during the ’80s to not count on the government to protect him.

”I can’t say I feel invincible,” he said. “I can’t say nothing will get me, because sooner or later something will. But I do think I’ve learned from H.I.V. not to be foolish. I do think I’ve learned that if someone else isn’t going to watch out for me, then I’ll watch out for myself.”

That’s why he got a mask weeks before the Centers for Disease Control and Prevention made it a recommendation for the general public. It’s also why he never believed six feet apart is a sufficient amount of social distance.

“Safe distance is going home and locking the door. That’s the truth,” he said.

But Mr. Rubenstein didn’t waste time taking actions that seem panicky and pointless, like buying up the nearest supermarket’s entire toilet paper supply.

“I mean, how stupid can people be?” he said.

And Richard Berkowitz, another AIDS activist, made it through March with his mood largely intact.

“Honestly,” Mr. Berkowitz, 64, said, “my first reaction when I heard about coronavirus was, ‘Wow! Lucky me. I actually managed to survive one pandemic to be here for another one.’”

Latest Category Posts