How to Survive a Pandemic: HIV Experts and Activists on Lessons Learned
On July 3, 1981, The New York Times published its first account of the yet-unnamed AIDS epidemic.
Doctors in New York and California have diagnosed among homosexual men 41 cases of a rare and often rapidly fatal form of cancer,” the article began. “Eight of the victims died less than 24 months after the diagnosis was made.”
Chris Bartlett was 15 when the article was published.
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“Between 1981 and 1995, when the first effective treatments came out … there was quite a bit of uncertainty,” Bartlett, now 53, told NBC News. “Would I become HIV-positive? Would I live? Would I survive? And I really didn’t have answers to that.”
Today, amid the global coronavirus pandemic, HIV health experts, survivors and longtime activists, like Bartlett are reflecting on the early — and undeniably dark — days of the AIDS crisis. Several of them spoke with NBC News about the parallels between the onset of the two public health outbreaks and what lessons learned four decades ago can help us now.
Denial can be deadly
HIV and the coronavirus are very different viruses in terms of contagion and lethality. However, in both cases, early decisions made by government officials and members of the public affected how the outbreaks became global pandemics.
One example of this, according to Cleve Jones, a longtime HIV and LGBTQ activist, was the cavalier attitude displayed by individualsduring the earliest days of both crises toward their chances of contracting the virus.
Jones, a close associate of gay icon Harvey Milk before Milk’s assassination in 1978, stressed “how very difficult it was” at first to tell other young gay men in San Francisco that there was a deadly virus spreading in their community and that “we had to change our behavior.”
“It was not welcome at all,” Jones told NBC News. “I had people spit on me.”
That early refusal to properly reckon with the risk of contracting a new virus is also what stood out to Dr. Howard Grossman, a gay physician currently working in Wilton Manors, Florida, who served his medical residency at a public hospital in New York City when HIV first broke out.
“At first it was, ‘Oh, I don’t do poppers, so I’m not going to get this,’ and, ‘No, I don’t do sex clubs, so I’m not going to get this,’” Grossman recalled.
“This was always an epidemic that was happening to ‘other people,’” Grossman said. “People didn’t have a sense of personal danger for most of the epidemic.”
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Examples of cavalier attitudes toward contracting COVID-19 were — and still are — aplenty. Rep. Matt Gaetz, R-Fla., jokingly wore a gas mask to the floor of the U.S. House on March 4, days before a close brush with a coronavirus patient in a Walmart parking lot led him to self-quarantine. On March 13, days before New York City ordered bars to close, they were packed shoulder-to-shoulder with revelers ignoring advice to voluntarily stay indoors. And just this week, as governors banned public gatherings in California and New York, Florida beaches were packed with young people enjoying their spring break.
Be wary of misinformation
In the early days of both outbreaks, the refusal of at-risk individuals to acknowledge their risk was due, at least in part, to government officials downplaying the severity of the situation, according to Grossman.
In October 1982, when hundreds of Americans had already died from AIDS, a journalist asked President Ronald Reagan’s press secretary, Larry Speakes, to comment on the mysterious illness: “It’s known as gay plague,” the reporter said.
“I don’t have it. Do you?” the press secretary snapped back, as the briefing room erupted in laughter.
It wasn’t until the late ‘80s before Reagan himself fully turned his focus to AIDS, which by then had taken the lives of tens of thousands of Americans. “After all, when it comes to preventing AIDS, don’t medicine and morality teach the same lessons?” Reagan asked in 1987, advocating for abstinence.
“Thanks to the president and Fox News, it’s been a similar thing: ‘It’s going to be overblown. It’s just going to be a few old people,’” Grossman said of the early response to the coronavirus.
On March 4, Trump appeared on Sean Hannity’s Fox News program and claimed that the World Health Organization’s COVID-19 death rate — an ever changing figure derived by dividing the number of confirmed deaths by the number of confirmed cases — was “ “false,” citing a “hunch” he had.
And a memo sent two weeks ago by the Trump campaign said the “media’s obsession with weaponizing the coronavirus against President Trump remains at pandemic levels.”
But by last week, the president had changed his tune. NBC News has reported that the administration’s initial response to the outbreak was “a story of missed opportunities, mismanagement and a president who resisted the advice of experts urging a more aggressive response.”
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Perry Halkitis, dean of the Rutgers School of Public Health, said similar misinformation circulated early in the AIDS epidemic, with certain populations believing that the virus was a CIA conspiracy or that it could could only infect gay men.
Gil Neary, 62, is a gay real estate broker living in New York City. He contracted HIV in 1987 and said his response to the COVID-19 outbreak has been visceral.
“Holy s—,” he recalled himself thinking upon first hearing about it. “It’s astonishing that we’ve gotten to the point that we’re at, especially considering it started halfway around the world.”
As with the early days of the AIDS crisis, Neary said he thinks “our leaders failed us in a big way,” and this time — as a man in his 60s living with a chronic immune condition in a densely populated city — he’s worried that he’s once again vulnerable.
“It’s very disconcerting, because you think, ‘Here we go again,’” he said.
Follow facts, not fear
Gay urban men, one of the first communities in which HIV/AIDS emerged before becoming a global pandemic, were among the first to receive scientific information that would help them modify their behavior based on facts, not fear. Thanks to community action, gay men were among the first to receive information about condoms reducing the transmission of HIV. The activist drag troupe Sisters of Perpetual Indulgence, for example, distributed safe-sex pamphlets in 1982, over a year before the virus was identified by the U.S. government.
Eventually, behavior modification caught on and helped slow the relentless spread of HIV among gay men.
“We got religious about that,” Peter Staley, a veteran HIV/AIDS activist, said of condom use during the HIV epidemic. “Assume the other person’s positive, assume you’re positive if you haven’t taken a test, and act accordingly.”
At first, many gay men resisted taking the HIV test because there were no treatments for AIDS and no legal protections for those who tested positive. But eventually, after activist groups like ACT UP and Treatment Action Group began to apply wider and more dramatic pressure on government agencies to enhance HIV privacy protections and scale up research spending, testing became more widespread, and the dynamics of how the virus spread began to come into view.
“Eventually we got to the point where we realized you had to really work at it to get it,” Ann Northrop, a lesbian and early ACT UP activist, said of contracting HIV.
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Initially, people feared the virus could be airborne or spread through surfaces, like COVID-19. At first, even medical professionals were afraid to be in the same room as some who had the virus, but through the relentless pursuit of factual information, Northrop said she knew HIV was contracted primarily through sex and she was not at risk of contracting it through her activism.
Now, however, with limited and conflicting information about the coronavirus, Northrop said she feels that same “generalized anxiety” that struck many people, particularly gay men, in the early years of the AIDS epidemic.
“I, for the first time in my life as a journalist and complete news junky, am having to limit my news consumption,” Northrop, co-host of the weekly cable news program and podcast “GAY USA,” told NBC News.
While “safe sex” was at first the leading behavior modification to stem the spread of HIV (today, many also take PrEP for HIV prevention), “social distancing” is the recommended way to “bend the curve” of the COVID-19 pandemic.
“Man, people are just eyeing each other with such suspicion — and really making sure not to come in contact with each other,” Northrop said of a recent trip to a pharmacy in New York City, one of the areas hardest hit by the outbreak.
Brooklyn artist John Hanning, 57, knows the fear and anxiety that accompanies a new viral outbreak well. He was diagnosed with AIDS in 1995 and given six months to live.
“My doctor told me I needed to decide what I wanted to happen to my remains,” he said. “It hasn’t been easy, but now I’m undetectable, and I’m pretty healthy.”
Hanning, who was recently featured on the AIDS Memorial Instagram account sharing his story of survival, said an important lesson to take away from the early days of the AIDS crisis is to resist fear and stigma, especially fear and stigma directed toward others.
“We shouldn’t live in fear, and that’s something that happened during the AIDS crisis,” he said. “They were afraid of gay people, because of AIDS or HIV, and hopefully with this coronavirus, there won’t be that stigma.”
Amid this current pandemic, which originated in China, there have been multiple cases where Asian Americans have been targeted in the U.S. Last month, a 16-year-old Asian American student in Los Angeles County ended up in the hospital after he was beaten by peers who accused him of having COVID-19. On March 10, at leasttwo Asian American New Yorkers reported racist attacks: A 23-year-old woman said she was punched in the face and called anti-Asian slurs by another woman, and a 59-year-old man said he was kicked to the ground and called slurs.
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Widespread anxiety and fear do not result in superior health outcomes, Halkitis stressed. What does, he added, is proper information and an atmosphere conducive to collecting that information.
During the height of the AIDS crisis, he explained, it took years before people had the proper information needed to protect themselves: information about their status, and information about how to use tools like condoms to make their social/sexual interactions safer.
“People were shooting in the dark, kind of like they’re shooting in the dark right now,” he said, referring to the lack of testing and information about the virus.
“There’s this huge emotional weight that surrounds this situation,” Halkitis said of the public’s attitude toward the pandemic. “We have to acknowledge that, and make it be safe for them to be willing to control this disease and make the right decisions.”
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In the late ’80s, once it became easier, safer and more empowering to know one’s own HIV status, more people could take action to either prevent the spread or prevent themselves from becoming infected. That, too, could soon happen in the coronavirus outbreak, but not without the proper information about who has or has had the virus, Halkitis said.
Halkitis said if he had a “magic wand,” he’d test everyone today for coronavirus. “Send it with their census packet,” he added.
As of Friday afternoon, there were more than 250,000 confirmed COVID-19 cases globally and over 10,000 deaths, according to Johns Hopkins University. A recent report by The New York Times suggested there may be 5 to 10 undiagnosed coronavirus infectionsfor every confirmed case.
Maintain community — even if virtual
Chris Bartlett, now the executive director of the William Way LGBT Community Center in Philadelphia, said the most crucial lesson he learned as an HIV activist with ACT UP was “the importance of being in a community to settle my spirit in times when I felt anxious, disconnected, lonely and isolated.”
Even while practicing social distancing, Bartlett said connection is still possible — albeit a different type.
“One of my goals every day has been to get onto Facebook, Google chat and Skype to reach out and see people through the technology that’s offered to us to make a daily connection,” he said.
Through his decades of activism, it’s this “strong fabric of community interconnectedness” that he cherishes most.
“That gives me enough hope to get through today, without really being clear what’s going to happen tomorrow,” he said.