‘How to Survive a Plague,’ by David France (original) (raw)

"How to Survive a Plague"Knopf

Bob Rafsky was sick and tired when he bought a ticket to a Bill Clinton fundraiser in the spring of 1992 — sick with AIDS and tired of government inaction in the face of an epidemic. Rafsky, a public relations executive turned full-time activist, wanted to get the Democratic front-runner to talk about AIDS, at least say the word out loud, something Clinton had so far refused to do.

As Clinton began to speak, Rafsky heckled him.

“Bill, we’re not dying from AIDS as much as we are from 11 years of government neglect,” Rafsky said.

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For the first time, Clinton made specific commitments about what he would do about AIDS as president. Rafsky wasn’t satisfied and took direct aim.

“What you’re dying of,” he said to Clinton, “is ambition.”

Clinton reacted like a bull that had just been gored.

“I feel your pain!” he shouted. “I feel your pain! ... If you want something to be done, you ask me a question, you listen. If you don’t agree with me, go support somebody else for president. But quit talking to me like that. This is not a matter of personal attack. It’s a matter of human loss.”

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Clinton seized the moment, but the effects of Rafsky’s audacity lasted much longer, David France argues in “How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS.”

“In those few sentences Clinton cast himself as a better friend to people with AIDS than people with AIDS themselves,” France writes. “He would become the ‘I feel your pain’ politician. That night, the clean-cut Rafsky looked like a hothead on every news broadcast in the nation, but it didn’t matter. He had forced Clinton to make a plea for compassion and action in the epidemic, the foundation for an AIDS agenda.”

The real story came the next week at a meeting of ACT UP (the AIDS Coalition to Unleash Power). Rafsky was greeted with an ovation; he responded with an eloquent prediction.

It’s important to force “these clowns” to say the right thing, Rafsky said, but “we all know that the names of the people who might save our lives are not Bill Clinton, Jerry Brown, et cetera. The names of the people who might save our lives are (activists) Iris Long, Mark Harrington, Peter Staley, et cetera. And they’re the ones who’ll be remembered as the heroes of this epidemic, as well as those who have gone before.”

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Rafsky didn’t live to see how right he was. He died less than a year later, one of more than 35 million people with HIV to die since the first cases were diagnosed in 1981, according to the World Health Organization.

But the work of ACT UP and other groups pushed drug companies and government agencies to overcome homophobia, greed and bureaucratic inertia and produce a treatment, antiretroviral therapy, that delivers real results.

The men and women in the AIDS advocacy movement saved lives and made history. France has honored them by telling their stories, first with a 2012 documentary, “How to Survive a Plague,” and now in a remarkable book with the same title.

The film had an immediacy that was enhanced by the extensive use of contemporary news footage (including Rafsky’s confrontation with Clinton and another in which Rafsky tells a drug company executive “You’re killing me, you in your suit and tie”).

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The book covers the same events but goes deeper and takes a wider, more personal view. France moved to New York in the summer of 1981, two weeks before the first article on the plague, “Rare Cancer Seen in 41 Homosexuals,” appeared in the New York Times. He reported on AIDS while watching dozens of friends and a lover die from the disease.

Such hard-earned inside knowledge gives France’s book a perspective missing from other AIDS histories. He was there at the meetings, marches and direct actions, and his connections to movement leaders gave him access to documents and video that enhance his reporting.

“How to Survive a Plague” is the definitive book on AIDS activism, a long-overdue update on Randy Shilts’ 1987 “And the Band Played On.” (Unlike Shilts, whose book grew out of his groundbreaking reporting for The Chronicle, France keeps a tight focus on one city, New York. Other than a brief portrait of activist Bobbi Campbell and a report on the ACT UP protests at the 1990 International AIDS Conference, San Francisco is mentioned only in passing.)

The scientific infighting that delayed AIDS research gets an appropriately thorough going-over, but the real story for France is how the gay community in New York educated itself in the middle of a horrific epidemic, overcame internal bickering, organized politically and succeeded in the face of enormous pressure.

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The movement’s persistence made a difference in patient rights, in getting more women and people of color enrolled in drug trials and in lowering drug prices, notably ACT UP’s pushback against Burroughs Wellcome, the manufacturer of AZT.

It must be difficult for people under 30 to understand how openly homophobic America was in the 1980s and ’90s. Ronald Reagan and George H.W. Bush ignored AIDS as the U.S. death toll rose from 618 in 1982 to 194,476 in 1992. Sen. Jesse Helms single-handedly stymied federal HIV/AIDS research and prevention while railing against “the sodomites” and “their deliberate, disgusting, revolting conduct that is responsible for the disease.”

Circle K, to single out one awful corporate example, canceled health insurance for any of its employees with AIDS unless they could prove it came from a blood transfusion or a spouse. Violence against gays increased as fear of the disease spread.

Against such opposition, a few men and women stood out. Dr. Joseph Sonnabend did pioneering research and treated hundreds of HIV-positive patients with dignity and compassion. One of Sonnabend’s patients, Michael Callen, wrote a safe-sex pamphlet with Richard Berkowitz that challenged gay men to change their behavior and saved lives.

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Larry Kramer, cantankerous and courageous, was a co-founder of the Gay Men’s Health Crisis and ACT UP and an outspoken advocate for getting “drugs into bodies.” Staley left Wall Street for a life of fundraising and protest that included wrapping Helms’ house in a giant condom.

The combination-therapy breakthroughs of 1996 produced a “Lazarus effect” that astounded researchers.

“In St. Vincent’s (hospital), the plague’s original epicenter, a remarkable proportion of patients lying in the AIDS ward rose unexpectedly and went home,” France writes. “... The epidemic that had wiped out a generation of gay men and then torn huge holes through African American and Latino families in most major American cities, the plague that burned through Europe, sub-Saharan Africa, Asia, and the Pacific, claiming millions and millions of lives worldwide, had been all but vanquished.”

Not quite. There is no cure for AIDS. About 1.1 million people with the disease died last year, according to U.N. statistics. Much of the developing world has no access to AIDS drugs or can’t afford them. More than 1.2 million people in the U.S. are living with HIV. About 13 percent of them don’t know it.

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It’s not easy to balance solid journalism with intimate understanding of a subject, and even harder to write eloquently about a disease that’s killing your friends and loved ones. France pulls it off, in his own words (his description of finding a college roommate’s panel in the AIDS Memorial Quilt is heartbreaking) and in letting his articulate sources speak for themselves. Callen, in a final interview, said, “I realize some people could look at my life and say ‘Oh, it was so sad. He died of AIDS and isn’t that tragic.’ But what I want to come through is that even after all the pain and all the torture, and even having AIDS, I can honestly say that being gay is the greatest gift I was ever given. I wouldn’t change it for the world.”

Jeff Baker, a former book editor and movie critic for the Oregonian, lives in Portland. Email: books@sfchronicle.com

How to Survive a Plague

The Inside Story of How Citizens and Science Tamed AIDS

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By David France

(Knopf; 624 pages; $30)

Nov 30, 2016|Updated Nov 30, 2016 3:08 p.m.