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HIV in the '80s: 'People didn't want to kiss you on the cheek'

By Elizabeth Landau, CNN
Like so many gay men in the 1980s, Edmund White struggled with an illness that seemed like a death sentence.
Like so many gay men in the 1980s, Edmund White struggled with an illness that seemed like a death sentence.
STORY HIGHLIGHTS
  • Author Edmund White, 71, found out he had HIV in 1985
  • White, Larry Kramer and four other men founded Gay Men's Health Crisis
  • White felt isolated and discriminated against as a result of his disease
  • He is now a professor of creative writing at Princeton University
RELATED TOPICS

On June 5, 1981, the virus that would become known as HIV was mentioned for the first time in a medical publication. As we approach that anniversary, CNNHealth takes a look at 30 years of the epidemic that changed the world, through the eyes of people who've lived it.

(CNN) -- In 1985, Edmund White had five or six published books behind him, a Swiss lover with him and the outcome of an HIV test ahead of him. When the results came in, White told his partner:

"I'm a good enough novelist to know how this is going to work out. I'm going to be positive, you're going to be negative, you're going to be very nice about it, but you're going to break up with me within a year."

By many accounts, White is a good novelist -- a great one, actually, having written numerous acclaimed works of fiction and nonfiction.

Unfortunately, his storytelling sensibility foretold how the HIV tests would turn out and how he would lose his lover because of the dire prognosis: only two or three years left to live.

Like so many gay men in the 1980s, White struggled with an illness that seemed like a death sentence and isolated him from those who feared contagion. But he didn't let himself be defined by his illness, nor did he try to hide it.

Through his activism, writing and public appearances, White gave a voice to so many of his peers who were afraid to announce their status and a memory for the hundred-some friends he has lost to AIDS over the past 30 years.

30 years of AIDS moments to remember

The price of free love

For many, HIV marked the end of what has been called the "Golden Age of Promiscuity." After the Stonewall riots of 1969, when gays fought back against a police raid at a bar in New York's Greenwich Village, gay activism exploded across the country, and social life became more open. And with birth control pills available, abortion legalized and antibiotics developed for many sexually transmitted diseases, the risks of all forms of sex seemed more minimal than ever before.

If you've read White's books, you know he's not shy about how much sex he had with a gamut of men in those days.

"New York seemed either frightening or risible to the rest of the nation. To us, however, it represented the only free port on the entire continent. Only in New York could we walk hand in hand with a member of the same sex," White wrote of the 1970s in his memoir "City Boy: My Life in New York During the 1960s and 70s."

That relative bliss came under attack in 1981, when writer Larry Kramer invited White and dozens of other gay men to his apartment near Washington Square Park. Dr. Alvin Friedman-Kien, a dermatologist and virologist at NYU's Langone Medical Center, spoke to them about a mysterious illness that seemed to target gays.

Friedman-Kien had been finding Kaposi's sarcoma, a tumor normally seen only in older men of Eastern European or Mediterranean origin, in young gay men. Cases of that "gay cancer" were also cropping up in San Francisco.

"People asked me what they should do, and I said, 'well, really, we think there might be something about gay sexual activity related to the tumor and the other diseases that are occurring.' And the group was kind of outraged," Friedman-Kien remembers. "They weren't about to give up free sex and their open new lifestyle."

"Everybody looked at everybody like, is this guy crazy?" White recalls.

Meanwhile, in Los Angeles, Dr. Michael Gottlieb had started seeing clusters of pneumocystis pneumonia (PCP) among gays, leading to a June 5, 1981, report from the Centers of Disease Control and Prevention that's considered the first scientific publication regarding HIV.

In July, the CDC published a followup about the Kaposi's sarcoma cases that Friedman-Kien and other doctors had observed. Both the pneumonia and cancer symptoms indicated that a never-before-seen infectious disease was destroying the immune systems of many gay men.

A new "crisis"

As more people in their community came down with this illness, White, Kramer and four other men formed the Gay Men's Health Crisis. The name emphasized the target population of gay men and the seemingly temporary nature of the disease. White became the first president.

The organization, which met in people's living rooms, had ambitious goals that were hard to achieve in the early '80s. The men wanted to urge prevention, but no one knew exactly what was causing the disease or how to control it; they wanted to back research but didn't have enough funds; they wanted to sustain people who had the disease, even though there weren't effective treatments at the time. Also, they believed that society at large didn't care.

But the group was in the dark about how to best help the cause. "We were so benighted and so cut off from the mainstream and so low in self-esteem that all we could think to do was to have a disco party," he said.

Unfortunately, these parties didn't generate enough money to finance research or spread information, and researchers had trouble getting enough funding. Friedman-Kien and colleagues had to rely on handouts and private foundations for research money because they couldn't get the attention of the government, including the New York Public Health System.

"The attitude was, these (diseases) are only in gays and IV drug users, underdogs, people who didn't deserve any special attention," Friedman-Kien said. "It wasn't until the hemophiliacs developed PCP pneumonia and other opportunistic infections that the government suddenly felt they were victims."

Compared with other illnesses, though, the trajectory of HIV research and treatment development moved faster than almost anything else in medicine, said Dr. John Bartlett, professor of medicine at Johns Hopkins University School of Medicine, who has led the school's efforts to combat and prevent AIDS since the early '80s.

"The people that had it had the feeling that their needs were being ignored. I think that plays out with any really lethal disease. You just don't think scientists or medicine is doing enough. Some of it is not necessarily reality," Bartlett said.

After a few months, White was happy to hand over leadership of Gay Men's Health Crisis to Paul Popham, whom White remembers as a successful businessman. But Popham and Kramer fought, leading to Kramer's departure from the group. Kramer later wrote the play "The Normal Heart" about those early days of Gay Men's Health Crisis, now recognized as the world's first provider of HIV/AIDS prevention. Kramer went on to found ACT UP, an activist group instrumental in demanding better health care and research for HIV. Popham died in 1987, of AIDS.

No refuge in Europe

When White moved to France in 1983 through a prestigious Guggenheim Fellowship for writing, he thought he was escaping this new disease, at least for a while. He liked Paris so much that he stayed there -- "with its drizzle, as cool, grey and luxurious as chinchilla," he writes in the autobiographical novel "The Farewell Symphony" -- beyond the year that he had planned.

But HIV began hitting the country in a big way. One of its early victims was French philosopher Michel Foucault, also gay, who invited White over for dinner a few times for rich meals without vegetables. When White brought up AIDS, Foucault laughed and accused him of being puritanical, calling it an "invented" disease "aimed just at gays to punish them for having unnatural sex." The esteemed thinker died of the disease in the summer of 1984.

"In Paris AIDS was dismissed as an American phobia until French people started dying; then everyone said, 'Well, you have to die some way or another.' If Americans were hysterical and pragmatic, the French were fatalistic, depressed but determined to keep the party going," White writes in "The Farewell Symphony."

Since he'd had so many sexual encounters with different men, White had generally assumed that he was HIV-positive. But the reality of blood test results hit him hard: His own life party seemed to have stopped.

He was too dejected to write and had no support system to help him through that tough time. None of the American-style support groups existed in Paris. He had joined a group called AIDES, founded by Foucault's surviving partner, but the focus was more on political campaigning than on personal experiences with the illness.

"People didn't talk about things like that. If somebody became ill in Paris, they would go back to their village and die behind closed shutters," he said.

AIDS gave its victims what Bartlett calls "the three D's" that no one wants to have: dementia, diarrhea and disgrace.

"It was an awful way to live. They got emaciated. They died a lingering death," Bartlett said. "If you asked me, 'How would you least want to die?' I'd say, 'The way an AIDS patient died in 1990.' "

And back when people thought HIV could be transmitted through saliva or tears, they would limit their casual contact, White said. Bartlett remembers the same fears; people even wondered whether mosquitoes could transmit the virus.

"Mothers didn't want me picking up their babies. People didn't want to kiss you on the cheek. People certainly didn't want to have sex with you, especially other gay people. It was very isolating and demeaning," White said. "That was a long battle."

But within a year or two, educated people got the word that HIV doesn't spread through non-sexual gestures. The death of actor Rock Hudson in October 1985 played a big part in that, White remembers; there was so much publicity around Hudson's death that it had the effect of bringing AIDS out of the closet.

And back in the U.S., President Reagan also took the issue seriously. Surgeon General C. Everett Koop wrote a brochure about AIDS that was sent to all 107 million American households in 1988. Bartlett also gives a lot of credit to basketball star Magic Johnson for revealing his HIV-positive status in 1991, destigmatizing it broadly.

Still, it was harder to get a date (and still is). White said that once he reveals his status, he'll often be rejected instantly "unless people are very educated and scientific in their orientation."

Enlightenment

White isn't a religious or "New Age-y" person and considers himself an atheist. But about a year after the diagnosis, he had a moment of reflection that kept him moving forward.

He sat in his Paris apartment cross-legged on his little couch-bed, in a yoga position he barely knew how to do, and meditated. It was a way of coping with his positive status, since statistically it seemed inevitable that he would die soon.

"I asked my body if it was going to die or not from AIDS. And it said no," he said. "I sort of paid attention to that."

Superficially, he considers it a "totally superstitious, ridiculous moment."

But he listened to it, even when the reporters started showing up in Paris to interview him as a great writer who would be dead within a year. PBS's Peter Jennings and the BBC's "Face to Face" featured him in 1990.

White spoke to reporters about being HIV-positive when virtually no other prominent people were open about it. At that time, the only people seen talking about AIDS in the press were doctors, he said.

"I took it as being something like the original struggle to come out as a gay person. And I said, 'OK, well, now we have to come out as being positive.' But nobody else was that imprudent, because they really felt that it would lead to discrimination," he said.

Among his works from that period, he co-wrote a book of short stories with Adam Mars-Jones called "The Darker Proof," published in 1988, which was the first creative statement by gays about what living with the disease was like for ordinary people. The short story "Palace Days" fictionalizes the moment when he told his Swiss lover how he thought he'd be positive and his partner would be negative.

White devoted himself to researching the life of gay novelist Jean Genet, a project that took seven years before the highly acclaimed 1993 biography appeared. And in 1997, he published "The Farewell Symphony," the third of his autobiographical novels. Having recently lost his lover to AIDS, the narrator looks back on his sex-filled experiences in New York and Paris but confronts the disease head-on only in the last chapter, when he finds out his own status and loses many good friends to the illness.

"And now, as I numbered my dead, I felt that I'd spent my whole life social climbing and someone had sawed the ladder out from under me," he writes in "The Farewell Symphony."

The medication question

White didn't take any drugs in the early days. He was raised a Christian Scientist, and even though he didn't subscribe to that religion, he still kept the old habits of avoiding doctors for the most part.

In 1986, the year after White's diagnosis, AZT got approval from the U.S. Food and Drug Administration, marking a breakthrough for AIDS treatment. Pharmaceutical companies had shied away from drug development because they thought it was impossible to treat a retrovirus, a disease like HIV that's incorporated into the genome of the infected person. Importantly, AZT quickly brought down the rate of babies infected with HIV, Bartlett said.

But everyone White knew who took AZT in the '80s seemed to die faster than those who didn't take it.

"We just knew that it worked, but we knew it didn't last long," Bartlett said. It seems, retrospectively, that AZT lengthened life by about four to six months at that time.

Since his T-cell counts were still relatively high, White didn't try AZT. The drug had to be taken every four hours, even during the night, and came with nausea, diarrhea, vomiting and other side effects.

"It made people sick, sick as a dog, because we gave huge doses," Bartlett said.

A more robust therapy came in 1996 with the "triple cocktail" of three kinds of drugs that help the body fight HIV and boost the immune system's defenses. That marked a game-changer, with the ability to lower people's virus load to undetectable levels. Still, the regimen was demanding at first: People needed to take their medications several times a day and had bad side effects, Bartlett said.

Since then, the drugs have gotten a lot easier to manage. There's even treatment that's a single pill, combining the three kinds of drugs, that can be taken once a day, and more like that are in the pipeline, Bartlett said. And with available treatments, many people are living with HIV as a chronic illness instead of dying and don't have specific symptoms. Patients on appropriate meds may have "near-normal" longevity, Bartlett said, though more research is needed to determine the illness' exact effect.

"The medicine that we have today restores health," Bartlett said. "It's a whole lot different than it used to be, and they look terrific."

No longer a death sentence

White eventually learned that he's in a small category of people with HIV called slow progressors, people whose disease does not develop as rapidly as in most patients. Since 2004, he has been on a simplified triple-therapy regimen.

Now 71 years old, White has been a beloved professor of creative writing at Princeton University since 1999, a position in which his knowledge, charisma and passion for prose often transform students' thinking about storytelling.

Gay Men's Health Crisis has also transformed from the small gathering of White and five other men in 1981; it now has 200 staffers, 900 volunteers and a corporate structure. The organization offers many services such as rapid testing, support groups and a hot line, and it advocates for more government funds for HIV/AIDS.

"We certainly stand on the shoulders on those six very brave and courageous men who challenged the larger society, challenged the gay community, challenged government to really take account of what was happening, even before it was officially named and even before people understood it," said Marjorie Hill, the current CEO of Gay Men's Health Crisis. "They said, 'We need to take care of each other.' "

As the endurance of that group suggests, the crisis is not over. The most recent data from the CDC suggest that there were about 56,000 new HIV infections in 2006, and 15,600 AIDS-related deaths per year, in the United States alone. And although fewer people are dying than in the 1980s, there's still a lot of work to be done, particularly with regard to prevention and education, Hill said.

"The continued service as well as advocacy we do is really a continuation and in honor of the courageous move that they made, what's for some people a lifetime ago," she said.

White writes, on average, a book every year. Teaching and writing take up most of his time. He has lived with his partner Michael Carroll, with whom he has an open relationship, since 1995.

"Now, I think there's every reason to be hopeful. It really is more like a disease like diabetes," White said. "There are a lot of inconveniences, but you can go on living. And I would say AIDS is about like that now."

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