Dr. Lawrence Mass, who wrote the first article about AIDS in a U.S. publication, points to South Africa when reflecting on the legacy of AIDS denialism. The legacy, he says, is "the death — the preventable unnecessary deaths — of more of 330,000 people" there. Elias Williams for NPR
Forty years ago, Lawrence Mass, a young, gay doctor living in New York City, made history. It is the kind of history no one wants to make.
Mass began writing news stories about a disease that many did not want to acknowledge.
At the time, gay men were falling ill from a mystery illness that left them with severely compromised immune systems. Mass's first article about it published May 18, 1981, for the New York Native, a gay newspaper. He'd gotten a tip from a friend who worked in a city ER and saw these cases up close.
Mass had been writing various stories for the gay press, first in Boston and then in New York City, for a couple of years. He focused on gay health care and specifically psychiatry.
His friend, the ER doctor, "was very concerned. She said there's gay men in New York City intensive care units," Mass said. "And she knew that I was trying to do outreach to the gay community about medical and health issues, there wasn't really anybody else to call."
The article Mass wrote was a landmark: it was the first story about AIDS in a U.S. publication.
That article carried this headline: Disease Rumors Largely Unfounded. But what was unfounded then would soon become one of the biggest pandemics the modern world had ever seen.
Mass said he was trying to stop what was then just a rumor and prevent a panic.
The article was a milestone in public awareness, and it marked the beginning of Mass' journey as an AIDS writer and advocate. Through the 1980s and '90s, Mass' stories were prolific as he explored all aspects of the emerging science and denial.
But because science lacked any definitive answers for so long, some of those early theories turned out to be wrong, and with the lack of concrete information came misinformation and denial.
Dr. Lawrence D. Mass, who wrote for the New York Native magazine, poses for a portrait at Union Square Park in Manhattan on May 18, 2021. Elias Williams for NPR
As often happens, when science is searching for the answers and formulating hypotheses, attractive theories get elevated to facts prematurely. And even after they're disproved by solid scientific studies, the public may not get the news – the wrong ideas persist — and if it's convenient, politicians may exploit the misunderstandings.
'Speaking out of both sides of my mouth'
Mass moved to New York City at the tail end of the 1970s. He'd started coming out as gay in the years before his move. Mass said that after being treated by the first openly gay psychiatrist in the U.S. — Richard Colestock Pillard — and experiencing rabid homophobia while applying for psychiatric residencies himself, he turned his talents toward gay liberation.
"It was my entree into activism, really," Mass said. "New York had a vibrant, unfolding gay life and gay, you know, outlets ... bathhouses and bars and, you know, a very big active gay life."
Mass had waited a long time to live this free, gay life, so when AIDS began tearing through his community, he was reluctant to change his behavior at first. But then as reports ballooned it became impossible to ignore that something was happening.
"I was having a lot of casual sex, including unprotected, unsafe sex, and I started curtailing that," he told Morning Edition.
Then more gay men got sick. More died. And yet science was still in the dark.
"People didn't know whether it was saliva or fellatio. There was questions about poppers — amyl nitrites — and people engaging in fist-f******," Mass said. "The advice that we got was limit the number of partners with whom you have sex and try to make sure that they are healthy. People were already urging condom use but that was in some dispute."
Left: Dr. Lawrence Mass (left) and gay activist and author Vito Russo (right) at a joint 40th birthday party for the two in 1986. Right: Mass (left) with his life partner Arnie Kantrowitz who is an author, activist and co-founder of GLAAD, and Vito Russo (right) early '80s. Dr. Lawrence D. Mass
There was a lot in those early days that was disputed. At the outset, there were many who questioned whether it was even sexually transmitted. But playwright and author Larry Kramer was certain it was. "I was a good friend of Larry Kramer, and almost immediately we started talking about it. In very short order, Larry called together a gathering of people in his living room. And there were several of those meetings," Mass said.
It was in those meetings that Mass, Kramer and four others would form the Gay Men's Health Crisis — which evolved into an informational and social services organization for gay men with AIDS and their loved ones.
Kramer, who died at 84 in 2020, was every bit pugnacious as history remembers him to be, Mass said, but that fighting nature made him a potent organizer.
"Larry really took the bull by the horns and said 'This is really a disaster. We have to deal with it. Nobody else is going to deal with it,' " Mass said. "Larry had so much anger and people felt that he had a lot of personal grudges with the gay community. I mean, he was very much an outsider kind of figure in a lot of ways. He was not widely beloved."
Kramer had made his name in part by publishing the satirical novel Faggots, where he lambasted what he saw as an overly-sexualized gay culture of excess. So, when he called for gay men to cut back on sex, it was a recommendation that was easy for certain segments of the community to deny. Even Mass had his own disagreements with Kramer.
Mass (left), Larry Kramer – playwright and Gay Men's Health Crisis co-founder (middle), and Rodger McFarlane (right) – GMHC's first paid executive director at the opening of a 2006 GMHC exhibit at the Museum of the City of New York. Dr. Lawrence D. Mass
"I was in the middle with Larry. I knew Larry very well personally as a friend. I regarded him as a brilliant man who had important and valuable things to say, always, but who also had a lot of personal issues. He was very contentious, very difficult. I was his ally and supporter and colleague and friend, and at the same time, I was his critic."
Kramer would eventually break from Gay Men's Health Crisis because he felt the organization he had helped create was in its own denial and not forceful enough. He went on to form ACT UP — the AIDS Coalition to Unleash Power.
Mass continued continued publishing articles with the best information at the time, but he also kept living his life.
"I was speaking out of both sides of my mouth," he said. "Basically, I was giving out these advisories about the epidemic, which were sincere and serious but at the same time, I wasn't always following them as fully as they might have been followed or should have been followed."
Peter Duesberg and the denialists
It would take three years after Mass' article published for health officials to definitively link AIDS to what would come to be known as human immunodeficiency virus (HIV).
One form of denial was over – that personal kind that led so many to deny AIDS could be sexually transmitted — and another was just beginning. And this denial — that HIV wasn't the sole cause of AIDS — would change science, right up to today.
To see how, let's back up a bit to understand HIV and AIDS, and how the body responds with antibodies. Doctors often measure antibodies to this or that virus to determine if a person has had an infection or has had a strong enough response to a vaccine.
With AIDS, really sick people would turn up at the doctor's office, and sure enough, they would have antibodies to the virus. But unlike some other diseases, people would then continue to get sicker; they wouldn't get better.
Some scientists maintained that if people have antibodies for HIV, and they are still declining and dying, then it must not be HIV that is causing AIDS. It has to be something else.
The most prominent was Peter Duesberg, a professor of molecular biology at University of California-Berkeley. He was a leader in the field of cancer research. Initially he was championed in the gay press by the New York Native publisher and editor, Charles Ortleb. Duesberg blamed AIDS on a constant bombardment of activities he said lowered people's immune system — like promiscuity and drug use.
At first, Duesberg raised difficult questions about the relationship between HIV and AIDS. But as science came to understand the virus better, and the unusual way it caused disease, the questions got answered to most scientists' satisfaction. Not Duesberg.
In 1987, Duesberg's denialism went semi-mainstream. The journal Perspectives In Cancer Research published his theory: HIV does not cause AIDS. A year later, a large scientific summit about AIDS in Washington, D.C., was held in large part, according to New Yorker journalist Michael Specter, who covered it for the Washington Post, to put Duesberg's theories to rest.
"I asked him specifically at that forum: 'If you're so convinced that HIV does not cause AIDS, you have two daughters, why don't you just infect them? I mean, you'd be protecting them.' And he did not answer," Specter said. "I was angry. You know, kids were dying. People were dying all over the place, and he was important. He'd done a lot of research. He was not a nobody."
Specter said Duesberg got publicity from mainstream news because at the time his views cut against the grain of what most scientists were saying even then.
"Let's face it, when you have a famous researcher saying the opposite of what everyone else says, you put them on the air," Specter said. "You'd be crazy not to."
Does this sound familiar? Think back to last year when President Trump said COVID-19 would disappear.
"It's going to disappear. One day — it's like a miracle — it will disappear. And from our shores, we — you know, it could get worse before it gets better. It could maybe go away. We'll see what happens. Nobody really knows," Trump said in a White House briefing in February 2020.
Or when he said COVID wasn't very different from the seasonal flu.
"This is a flu. This is like a flu. It's a little like a regular flu that we have flu shots for," Trump said during another briefing also in February 2020.
Not unlike Duesberg's initial media play, Trump's position as the president of the United States gave him credibility, and thus, these statements aired repeatedly across news networks.
Also, not unlike Trump did initially with the coronavirus, President Ronald Reagan's administration largely ignored the epidemic during his tenure. Reagan didn't mention the word AIDS until 1985 — four years after the first report and around a year after HIV's discovery. In those early years, his press secretary Larry Speakes even joked about the disease with reporters. After years of protests and scientific research, new medicines in the mid-1990s started to get the virus under control in the U.S. But in South Africa it was a different story.
AIDS denialism and South Africa
In the 1990s, HIV/AIDS was ravaging South Africa. According to one study, by 2000, 25% of all deaths there could be attributed to the disease.
President Thabo Mbeki went searching for a reason why.
"He was looking on this somewhat brand new thing called the internet," Specter said. "And he ran across the statements of Duesberg, and they were exactly music to his ears."
Mbeki was skeptical of Western medicine and more importantly of the cost of emerging treatments. He convened a conference in 2000 that included Duesberg and his supporters and his opponents.
South African president Thabo Mbeki speaks to scientists on May 6, 2000, at a panel in Pretoria. The panel includes dissident scientists who argue that AIDS is caused in third world countries by problems as poor hygiene. Yoav Lemmer/AFP via Getty Images
Duesberg's claims then became Mbeki's denial. A virus, they said, couldn't cause a syndrome. Duesberg even served as an adviser to Mbeki, and Mbeki amplified Duesberg's claims that AIDS was caused by poor nutrition, recreational drugs and even the new drugs that treated HIV.
"You can't expect to take chemical at a dose that gets you so high that you can't sleep anymore, you don't eat anymore, and you have 10 or 20 sex partners a night and expect it to be totally inconsequential for your health," Duesberg said in a 1996 documentary that has been making its way around the Internet ever since.
Even more recently, Duesberg appeared on Joe Rogan's show: In 2012, he called HIV "one of the most harmless" viruses. This was at a point when 1.6 million people had died of AIDS, and long after very precise anti-HIV treatments had been proved to keep people alive for decades after being infected with HIV and nothing else.
NPR reached out to Duesberg for an interview, but, through his wife, he declined.
For Mass, Duesberg's influence was one of "cultism and fanaticism" that spread like pollen around the world.
"You cannot reason with people, you cannot argue with people who are basically cultists, so they have their viewpoints and [are] completely entrenched," he said.
The legacy of AIDS denialism
So what does the legacy of AIDS denialism tell us about the current state of COVID-19 denialism?
For Michael Specter, that legacy plays out in the mistrust of health experts.
"I think the legacy of AIDS denialism is that it raised doubts in a lot of people's minds about whether the consensus that had been arrived at by 99.6% of all scientists was necessarily something they had to listen to," Specter said.
Like when, during the COVID-19 pandemic, U.S. leaders sowed doubt in the need for testing, that children almost never transmit it, that there was no second wave of the virus and that if you stayed healthy, you'd be at low risk of sickness or death.
"When I was young, medical authorities were taken as gods, and you just did what they said, and I'm glad that world doesn't exist anymore. But what we have now are people who think they know as much as anyone else and scientists are treated like any other interest group, like they're the AFL-CIO or the teacher's union," Specter said. "We have trouble giving kids flu shots or the basic measles mumps, rubella shots because so many parents are skeptical of expertise."
The legacy of Duesberg's style of misinformation is haunting and profound, said Mass.
"HIV-AIDS denialism became a very serious, persistent phenomenon that resulted in the single greatest catastrophe in the history of AIDS, which didn't happen until the early 2000s: the death — the preventable unnecessary deaths — of more of 330,000 people in South Africa," he said.
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