Fauci recalls the terrifying early days of the AIDS epidemic

The rush hour traffic was tightening up, but Anthony Fauci, making the short commute from the National Institutes of Health (NIH) to his home in Northwest Washington, D.C., wasn’t thinking about the flashing brake lights up ahead. Instead, his mind was consumed with strange reports of an unexplained disease among gay men on the other side of the country.

At that moment 40 years ago, no one could have guessed they were witnessing the dawn of a worldwide outbreak that would infect more than 75 million people and kill some 35 million.

The first hint that something ominous was arising came in a little-noticed item in the June 5, 1981 edition of the Centers for Disease Control’s (CDC) Morbidity and Mortality Weekly Report (MMWR): Five gay men in Los Angeles had been treated for pneumocystis pneumonia, a rare fungal infection of the lungs caused by a severely weakened immune system. Not mentioned in the report: Two of the men had already died. Another would soon succumb to the infection.

Then came a second MMWR report in early July. Now no fewer than 26 gay men—this time not only in LA, but also in New York and San Francisco—were suffering from both pneumocystis and Kaposi’s sarcoma, a lesion-causing cancer of the blood vessels, and other opportunistic infections.

“I got chills up and down my spine,” Fauci recalls. “I said to myself, ‘Oh, my God, this has to be a new disease.’”

Fauci had only recently been named chief of NIH’s Laboratory of Immunoregulation at the National Institutes of Allergy and Infectious Diseases. Still, he was among the nation’s most experienced infectious disease experts, having joined NIH in 1968, right out of his medical residency. But his vast scope of knowledge and experience only made the case more perplexing.

“I kept going over it in my mind,” he says, “and the only conclusion I could come up with was that we were dealing with a brand new infection. It was likely a virus, because if it was a bacteria, we could probably see it. Viruses tend to be elusive.”

Fauci and his colleagues went with the tentative assumption that this new virus was zoonotic—originally transmitted from animals—because about 75 percent of all infections in humans start out that way. (Their assumption would prove correct.) The first step was to seek out patients who were suffering from the reported symptoms and bring them into the hospital for observation. (Watch Fauci discuss how we can stop pandemics before they begin.)

Nearly a decade after HIV/AIDS first appeared, effective, accessible drug treatments were still elusive. A 1990 demonstration at the National Institutes of Health demanded changes in policy that eventually led to new drug regimens.

Agonizing years

In a world where the COVID-19 virus was identified within weeks of its discovery and effective vaccines were developed within months, it’s easy to forget the agonizing years between the emergence of HIV and effective treatment of it. In July 1982, more than a year after HIV’s outbreak in the gay community, the CDC reported cases among hemophiliacs, an indication that the disease was blood borne. 

A month after that, on September 24, 1982, the CDC applied a name to the new disease: acquired immune deficiency syndrome (AIDS). In mid-December, CDC reported that infants in New York, New Jersey, and California were showing signs of AIDS. The growing number of cases in the gay community was particularly devastating.

“In mid-1981, we could see things were happening to people around us,” says Gregory Ford, an actor and AIDS activist in Washington, D.C. “Some people would suddenly get sick and die of pneumonia. Others would simply disappear from the community.”

Around the beginning of 1982, “the terror started,” Ford says. “We knew something was happening, but we had no idea how widespread it was…and how devastating it would become.”

It was clear the symptoms of AIDS were spreading, but until the virus causing it could be isolated and a screening method developed, doctors could only guess how many people in the general population were walking around with the disease.

The good news: In 1983 the HIV virus was identified, and a screening test was quickly developed. The bad news: Screening tests revealed that AIDS was widespread.

 “We were horrified,” says Fauci. “We had been dealing with only the tip of the iceberg. There were many, many, many-fold people who were infected who had not yet gotten clinically ill.”

Months went by and the global scale of the outbreak became clear. “We realized we were dealing with something not peculiar to the United States,” Fauci says. “The Europeans were seeing it, and in fact everything pointed to Africa as the place where it all began.”

Although Dr. Anthony Fauci (right) regularly briefed members of President Ronald Reagan’s commission on AIDS, he never felt the administration embraced efforts to educate the public and fully fund research.

You can see Fauci, circa 1984, on YouTube addressing an AIDS conference at NIH, where he had recently been named director of the NIAID. His shock of black hair is a little startling, and his Brooklyn accent hadn’t yet taken on the warm, gravelly charm of his later years. But Fauci’s straight-forward approach—and sometimes perplexing enthusiasm for describing the nature of horrible diseases—was already well-hewn.

“It gives me a great deal of excitement and pleasure to talk about AIDS,” he said from the podium, “because it really is one of the…only subjects in all of the subjects that we tackle…where you really have to change your lecture every month because of the extraordinary advances in the evolution of this syndrome.”

After 50 minutes of clinical exhortation, Fauci turns to the problem of prevention— the single most divisive element of the AIDS era, during which a large percentage of Americans, including medical professionals, insisted on viewing AIDS as “the gay disease.”

Ironically, it was that inaccurate and hurtful label that kept many members of the gay community from trusting mainstream medicine as the crisis spread, according to Ford.

“The fact that they were talking about a ‘gay disease’ made no sense to me,” he says. “If you think a disease is going to confine itself to a particular group of people, I can’t trust what you’re doing.”

As a result, Ford says, a comprehensive self-help network grew within the gay community. Through organizations like ACT Up in New York and Us Helping Us in Washington, D.C., people shared numerous unconventional AIDS treatments, including diet and natural remedies.

“People kept these huge files filled with information about treatments,” Ford recalls. “Things like, ‘If you’re taking one particular treatment, then you also need to take this to counteract the negative effects.’ Basically, you were your own science experiment.”

As early as his 1984 NIH address, Fauci was already taking note of the gay community’s proactive approach to HIV.

“The male homosexual community has responded in the most extraordinary and encouraging way by educating themselves and their brethren about the dangers of certain types of contacts,” he said.

Bad blood

One could argue that Fauci should also have spoken about the need for blood-supply screening and contact tracing. In 1984 Marty Keale, the father of a hemophiliac son named Stephen, was invited to a Los Angeles meeting between hemophilia community representatives and gay activists. But this was no friendly confab between allies. Because hemophiliacs at the time used concentrated clotting factor derived from human blood, and because thousands of them were becoming infected with AIDS due to tainted blood donations, relations between the two groups were strained.

“Some people in hemophilia health care had said some things—probably unintentionally—that implied blame on the gay community’s part,” Keale recalls. “And the gay community was not happy. In fact, they were very angry. We were sitting at this big round table with these people, all glaring at us.”

With the help of USC hematologist Edward Gomperts, a leading expert in the field of hemophilia, Keale soothed the raw nerves that day. But even after he moved to Sacramento and became executive director of a regional HIV/AIDS healthcare center, Keale continued to see such confrontations. 

“I think guilt played a role,” he says. “I was on a community advisory council that helped decide how federal AIDS funds would be spent. It became clear that, gay or not, at that time people tended to feel guilty about having contracted AIDS. And rather than accept that guilt, they had to blame somebody else. Things could get pretty heated.”

Left: Waving placard effigies of Reagan era political figures, ACT UP demonstrators shut down the FDA for an entire day in 1988, accusing the Reagan administration of ignoring the AIDS crisis. The group also demanded that experimental AIDS drugs be made available to such vulnerable groups as IV drug users, people of color, and the poor.
Right: While much of the nation’s focus was primarily on AIDS patients who were either gay males or hemophiliacs—also overwhelmingly male—women, too, suffered from the disease. A 1990 demonstration “For Women’s Lives” at NIH was aimed at righting that discrepancy.

Lonely voices

Despite the agonizing wait for a treatment while tens of thousands died, today Keale still feels confident the NIH was doing all it reasonably could in those early years. Fauci was one of the few government health officials willing to speak about AIDS at all—and especially about the fact that AIDS was much more than an isolated threat.

“This was a massive outbreak,” Fauci says. “But in those early years, officials in the Reagan administration were not particularly amenable to going out and speaking about this. They didn’t use the bully pulpit of the presidency.”

Fauci didn’t have the presidency behind him, but he did have the voice of authority and a growing sense of comfort before news cameras. While the Reagan administration remained relatively quiet, he gave one interview after another, pushing for increased research funding and trying to explain the nature of AIDS to the public. After Reagan left office, he says, “I developed very strong relationships with the succeeding Presidents.”

The war on AIDS lasted much longer than even Fauci could have imagined. In 1987 the FDA approved AZT to treat AIDS symptoms, even though the drug often caused serious side effects. The early 1990s brought antiretroviral drug treatments—followed by multi-drug therapies, the descendants of which now treat people with HIV with remarkable effectiveness.

“The journey of these past 40 years has been extraordinary,” says Fauci. “One of the great successes of biomedical research is the treatment of persons with HIV—and prevention in the form of prophylactic drugs.”

Although some recent drugs have claimed isolated HIV “cures,” Fauci remains skeptical.

“It’s a tough nut to crack,” he says. “This virus’ ability to integrate itself into the genome cells makes it very difficult to eradicate it from the body. But the good news is we have a single pill that contains three antiretroviral agents that directly act at three different vulnerable parts of the virus’ replication cycle. It’s been spectacularly successful.”

‘You were own your own’

For the earliest HIV/AIDS patients, such a well-stocked medicine cabinet was beyond imagination.

Ford and his partner were both diagnosed with HIV in 1987. “People said to us, ‘Why even bother to get tested?’” he recalls. “For one thing, there was no treatment. Plus, you couldn’t tell anybody except maybe your closest friends. You couldn’t tell anyone at work. You sure couldn’t tell your insurance company. What was the point? As far as the world was concerned, you were on your own. That was the hardest part.”

Ford’s partner died in 1989. And for an entire decade after his diagnosis, Ford refused conventional medical treatment, until he finally developed an opportunistic infection. “Even then, my doctor and I had to talk it though for quite a while,” he says. “Because I just wasn’t going to do it!”

Forty years after HIV made itself known, Ford is still a force on the D.C. arts scene, where he heads a theater company that provides a platform for people affected by HIV.

It’s tempting to superimpose America’s recent rapid mobilization against COVID-19 over the relatively slow progress made against HIV/AIDS, but Fauci believes there is very little room for comparison.

“COVID-19 was an explosive respiratory outbreak that put everyone at risk just by being near someone who was breathing,” he says. “It exploded throughout the world. HIV insidiously crept up on us.” (Read about the latest developments in the quest for an HIV/AIDS vaccine.)

 The differences between how HIV and COVID-19 were ultimately attacked by science highlight the unpredictable nature of virology. 

“For HIV we have spectacularly effective therapies, but no vaccine,” Fauci observes. “And with COVID-19, we have spectacularly good vaccines but no really good therapies.”

For Fauci, nearly four decades as director of NIAID has involved overseeing responses to the likes of not only HIV and COVID-19, but also Ebola, swine flu, resurgences of measles and whooping cough, and SARS. Epidemics don’t wait patiently in line; they can pop up any time, any place.

“That’s the reason we have good surveillance systems,” says Fauci, “so you don’t miss something lurking under the radar screen.”

This content was originally published here.

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