Book details early days of AIDS activism

  • by Brian Bromberger
  • Wednesday December 14, 2016
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Many critics are calling David France's new book, How To Survive a Plague the definitive book on AIDS activism. It was recently named one of the top 100 books of the year by the New York Times Book Review with gay writer Andrew Sullivan giving it a glowing front-page appraisal.

As an investigative reporter in the 1980s and 1990s, France, a gay man, was able to write firsthand witness accounts of grassroots activists often engaged in their own personal life-or-death struggle, who protested both to develop and gain access to new experimental drugs that turned AIDS from a death sentence to a manageable disease.

In San Francisco recently for a book signing and conversation with Terry Beswick, executive director of the GLBT Historical Society, France, 57, met with the Bay Area Reporter for an interview.

France began in 2008 to tell the story of the plague years. He had developed a book proposal and sent it to publishers who rejected it saying everyone knows the story.

France explained why this wasn't true. "Randy Shilts' excellent And the Band Played On didn't tell the whole story. It ended too quickly and told nothing about activism, this huge positive legacy that came out of the crisis with unexpected people doing heroic things," he said.

"But as part of my research I went back and began looking at the old videotapes of meetings and conversations and realized this could become the genesis of a documentary film," France said. "This was my first film and I thought it would be easy, but it was a tremendous amount of work going through archival footage that was shaky and shot by nonprofessionals. I had to watch 800 hours of that footage to find both multiple camera angles and the rich stories I wanted. It turns out I innovated a new language of filmmaking now called archival verite."

His film, How To Survive A Plague , would go on to be nominated for an Academy Award as best documentary and two Emmy awards.

"With the documentary I could only tell the stories of the people in front of the camera. I understood that I could only correct this void and tell the real complete history of what happened with AIDS activism with all the players by going back to writing my book. The writing took forever," he said.

France fortuitously found a trove of audiotapes, gathered in boxes that had never been listened to or transcribed, so that the conversations recorded in the book are actual ones, not recreated.

"When singer/longtime survivor cum activist Michael Callen, his writing partner, Richard Berkowitz (a self-described S&M hustler), and Dr. Joseph Sonnabend got together to invent safe sex and reject PWAs being labeled as victims, we have their initial meetings on tape. I know how they responded to the critics. They taped everything. The early treatment activists recorded their meetings with the National Institutes of Health and early pharmaceutical representatives. Everybody knew from the first days of the epidemic that things were going to get dicey and they would need an irrefutable record of what happened, so like the film I could tell the story in the way they intended it to be told."

The book chronicles the genesis, successes, and ultimate demise of the AIDS Coalition to Unleash Power, the radical protest organization.

By 1992, ACT UP was involved in every facet of AIDS from housing PWAs, clean needle exchanges, insurance issues, parsing the science �" especially treatment alternatives, as well as politics. And it had extended the life expectancy for PWAs (four months) and had delivered another drug in the pipeline as well as popularized prophylaxis treatments against opportunistic infections. But the death rate started to soar in 1992 and would double in 1993, culminating in its highest numbers in 1995.

"There was a sense of despair and futility, expressed in angry confrontations about strategy, responsibility, and accountability," France said. The rage, which had held them together for five years, began splitting them apart.

"In that fog of war, key people started imagining other people doing terrible things to them. A belief took hold for awhile that the group had been infiltrated by the FBI, fomenting more internal dissent, though I found no evidence of such a conspiracy," France said. "This is what happens when you've put in all these years as a volunteer and feel you have made so little progress. They had broken down the old drug approval process and thus began the eternal wait for the science to advance. It was a miracle they worked in concert for five years."

Of all ACT UP's campaigns, the one at St. Patrick's Cathedral in New York City was the most controversial. Every gay and AIDS organization in the country condemned the group for it. What had initiated the protest were the American Catholic bishops strengthening their position against condom use with false science. ACT UP felt the policy was always irresponsible in that it caused infection and death. At the protest, ACT UP was joined by reproductive rights activists.

"I don't judge them for that action. I let them judge themselves in the book, for it created great internal tension. It didn't unfold as planned, it was supposed to be a silent protest but was anything but silent," France said. "No one planned the most controversial action, the crumpling up of the communion host. It was committed by a single Catholic man with his own anger issues against the church, which dovetailed with the fury the others brought to it. [Activist] Larry Kramer said in spite of the criticism that it was the most significant action the group had ever taken because it made people afraid of the 'sissies,' that ACT UP would cross any line."

ACT UP was a constant media spectacle whether it be staging die-ins on Wall Street, closing down tunnels and bridges, or bursting into scientific meetings, causing them to come to an abrupt end. The media picked up on the actions but it didn't see what that was enabling.

"ACT UP had this concept that you don't talk to the media but through the media. This part of their campaign did have traction," France said. "By 1987 they had to present gay people as normal, everyday folks, although they dressed oddly and seemed frightening to middle America. Just the image of them at the doorstep of the FDA begging for a drug started reaching into the consciousness of America, which made progress. In the Gallup polls from 1981 to 1996 measuring America's feelings toward gay people, we saw epic positive change in the relationship of gay people to the rest of the nation. This was due in large part to the theatrics ACT UP engaged in; with their singular message that health care was a right for everyone. And America came to believe in this message."


Central figures

France paints portraits of central figures during the 1980s and 1990s, not only the activists, but scientists like Robert Gallo and Anthony Fauci. The chief character in this tragedy is Kramer, the principal adjudicator of the movement who radicalized AIDS activism, becoming an essential historical figure. Kramer put his own life on stage as emblematic of AIDS itself.

"He galvanized the whole process bringing about all the efforts so those drugs could be brought to market," France said. "He did it in an interesting way by being a pain in the ass. He was chaotic, unreliable at times, emotional. He could sometimes be dishonest, taking the opposite position you would imagine he would take, which he purposely intended to do, even when he did things that were indefensible. He made his personality center stage. Even when he seemed mercurial, he was always achieving what he set out to accomplish. His actions helped save thousands of lives, even with his flawed method, but it worked."

Gallo, the brilliant retrovirus researcher, claimed to have been the first to discover the HIV virus, challenging for years Luc Montagnier of the Pasteur Institute in Paris who insisted they first found the virus.

"Gallo made the point that the argument didn't delay research into the virus, but it did delay the release in this country of a reliable HIV screening tool," France said. "The French had developed one and had applied for a patent around the same time Gallo applied for one for his test. His test, according to all third party analysts, was significantly less reliable than the French test. We were in that period of Reagan's America, a kind of nationalism that took hold of the various arms of the Public Health Service.

"Gallo's test got approved and it took two years for the French to get their approval, but only on condition that they couldn't market it as being superior to the U.S. test, even though the Red Cross knew it was a better one. So there were an incalculable number of false positives, which led to more people committing suicide once they were told they had HIV, incorrectly as it turns out. It was one case every week in San Francisco that people were killing themselves after a diagnosis and HIV infection was being pumped into the blood supply because Gallo's test was not capable of screening all of it out. In fact, 1 in 10 people with AIDS were testing negative on the Gallo test. These were lives lost in this ridiculous and intellectually greedy campaign waged by the U.S. Gallo never admitted it was a mistake or expressed any remorse and when I broached the subject he was very defensive."

France, however, concludes that Gallo was "the towering figure in AIDS research," he said.

"He hypothesized the retrovirus. He developed the tools for finding it. He was the person who created the cell line to grow it in," France said. "Every intellectual breakthrough was his, but he couldn't find the virus. Montagnier, using all of Gallo's background, stumbled on the virus in a matter of weeks. To Gallo, I believe this was very unfair. He felt it should have been him and he had a personality type that couldn't and wouldn't shrug it off."


Personal story

France interjects his own story into the narrative of Plague , making it an insider's account.

"It's the first time I've written personally and it was a hard decision to make, as I'm a private person and I don't find my life all that interesting," he said. "I wanted to be able to interpret these events as a witness. I was the journalist from the start, never the activist. I wanted to talk about the different journeys, callings, and missions that would represent how AIDS drafted us to fight. For me, it had to do with my friends, my own fears, and ultimately my lover Doug Gould's infection, illness, and death.

"I felt I should share that so that future generations would know what that was like. I also wanted to look at the condition of surviving. What does it take to survive and after surviving what does it do to a person, what does it leave behind? For me it left behind all sorts of unprocessed stuff and I worked a lot of that into the writing. I went into therapy as soon as I finished the book."

France observed that despite the introduction of the protease inhibitor drugs in 1996, activists made sure there was no formal closure, as they didn't know if the drugs would continue to work or what their side effects would be.

"Because there was no cure, there couldn't be any celebration," he said. "Many activists moved into other aspects of the movement like how do you get these drugs out to people who can't afford them or to the rest of the world."

Today, France pointed out, more than half the people infected are on the drugs.

"I took some criticism when my film came out, because I celebrated that watershed moment of 1996," he said. "They asked me to tell them how to survive a plague because 'we're still trying to figure it out.' Long-term survivors have a hard time physically but also emotionally. It's post-traumatic stress syndrome, but we didn't go out to build support organizations or safety nets for those people."

France noted that there is anger between the generations. Those who survived want to be supported by the younger community.

"They don't have to worry about AIDS, which for them is only a dark ugly past, joyously living without that awful knowledge," said France. "The book is trying to bridge that gap by passing along to younger people the idea of what their community was able to accomplish in the plague years."


Patient Zero

Recently researchers have debunked the Patient Zero hypothesis advocated by Shilts that flight attendant Gaetan Dugas was the person who brought AIDS to North America, despite no evidence to support this view. In fact, France interviewed Michael Denneny, the editor of And the Band Played On, who admitted vilifying Dugas was part of a publicity campaign to sell more books, with Shilts reluctant to comply.

Denneny confessed it was his idea, which he later came to regret, France said.

"I drew the same conclusion as [the recent] study though I didn't have the biological knowledge they had. I knew from the stored blood samples taken from patients before they had AIDS that proved he was not the source of the infection as there were other people in that same study who also were infected," France said.

In his book, France said he tried to restore Dugas' humanity.

"I spoke to people who knew him. And I found him on the videotape Randy wrote about in his book. Randy described him as a sexual hedonist, head to foot in leather and arguing for the right to fuck as many people as he wanted. It's not the case. He was wearing a preppy light blue sweater. Randy saw him as the demon of the plague who immorally or amorally allowed the epidemic to spread. This was just a regular guy, though very pretty, as confused as anyone in 1983-84 as to what was happening," France said.

Speaking of Shilts' book, France sees Plague as both a sequel and a remedy.

"If you read Shilts' book you would have thought the epidemic impacted San Francisco more than New York, which was seen as a sideline to what was going on," France said. "But New York was the epicenter where 50 percent of AIDS cases occurred and that remained true into the 1990s. New York was the birthplace of AIDS activism, which Randy largely missed. His errors were mistakes of perspective. He lived in San Francisco. The people he wrote about were the people he knew, so I went back to the first day of the plague to retell the story from the epicenter and correct his historical misdirection."

France also mentioned Bobbi Campbell, a Sister of Perpetual Indulgence and a registered nurse who was the first person in San Francisco to speak openly about his infection, later proposing a national support organization for people with AIDS.

Throughout his illness Campbell kept a diary consciously created for the LGBT community and before he died in 1984 he appointed an executor to his journals who was going to edit and publish them. France, to his horror, found that except for one volume accidentally given to a nurse, Campbell's conservative family had deliberately destroyed them.

"Bobbi was a great historical figure who put his entire life onstage, including his recreational drug use and recreational sex, which are the things his family responded to in their decision to erase that part of our history," France said. "His activism included being an initiator of a meeting in Denver where PWAs throughout the country got together and for the first time wrote a declaration, the Denver Principles, which established their rights and responsibilities as people with AIDS, ultimately driving the movement and still does today. I spoke to his father, who said he didn't recall what happened, that he had left the diaries with his son, who had just died. I called his sister-in-law who told me the story and we both cried on the phone. I don't think she knew until that moment how much Bobbi belonged to all of us."

For France the next step in AIDS activism is about ending the disease, not in the sense of curing it, which might happen, but closing down the epidemic.

"We know how to do it. We have all the tools and our government is not doing it, so we need activists to do it," he said. "We know which communities are being hit hardest by HIV, kids ages 14 to 24, especially people of color, but we are not getting to them. If we do get to them and put them on effective treatment, they are rendered virtually non-infective. If we get to them before they are infected and put them on PrEP, then they won't catch HIV. So we do know how to get to zero, but it will take a huge effort to do it."

France sees a legacy to AIDS activism.

"Everything about medicine, drug research, drug approval, and drug marketing ... that entire field was revolutionized," he said. "Actually so was everything relating to culture because the fact that we are so integrated into American civic life today is the result of the way we responded to AIDS and the gains and traction we made in that response. I hold gay marriage as a direct result of that activism. Also lesbians and gay men were not engaged with each other before AIDS either politically or socially, and the epidemic brought us together. AIDS made the closet door a dangerous thing. It tore off those doors and opened up the possibility of self-identification and self-expression for so many people and created this massive, politically diverse LGBT community we have today."


How to Survive A Plague (Knopf Books, $30) is available in bookstores and on