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Saturday, September 13, 2014

Book review: And the Band Played On: Politics, People, and the AIDS Epidemic

Do you remember the 1982 Tylenol scare? I sure do. It was the talk of my school. Capsules were found to contain cyanide, and ultimately, seven people died. As Randy Shilts writes in And the Band Played On, when faced with such a threat to lives, the U.S.A. is capable of reacting swiftly and dramatically. The story was in The New York Times every day of October and twenty-three more times after that, as well as in media throughout the land. Within days, the Food and Drug Administration had cleared shelves across the country of Tylenol capsules, which have never been seen again (we got “caplets” after that). “No action was too extreme and no expense too great,” Shilts writes, “to save lives….

“By comparison, 634 Americans had been stricken with AIDS by October 5, 1982. Of these, 260 were dead. There was no rush to spend money, mobilize public health officials, or issue regulations that might save lives.”

Shilts’s thesis is ‘that AIDS did not just happen to America—it was allowed to happen.” His exhaustive research and interviews with almost a thousand people makes this hard to argue with, but this book doesn’t read like research. It is 600 turnable pages of interweaving plots, and reads like a massive whodunit. There are certainly bad guys: members of the gay community risking public health for sexual liberation, since that was the only liberation gays had; a researcher at the National Cancer Institute more concerned about recognition than about doing science the right way; a negligent industry of blood banks; a president of the United States who kept insisting that America's best days were ahead, while never even uttering the name of a disease that was killing his people. Public health workers who were too worried about making his administration look good to demand the resources they really needed. News media so biased towards heterosexual males that only the possibility of them contracting AIDS--from a prostitute--could get the disease into the headlines. Shilts excoriates them all.

But there are great characters, too. Larry Kramer, the writer and cofounder of Gay Men's Health Crisis, who never let up on New Yorkers, gay or straight, for not doing enough to stop the epidemic. Kramer is one of our prophets; in his 1985 play The Normal Heart, his alterego cries, "Why didn't you guys fight for the right to get married instead of the right to legitimize promiscuity?" Bill Kraus, the San Francisco gay liberationist, likewise saw what needed to be done and insisted on it, even while becoming sick himself. Dr. Selma Dritz at the San Francisco Department of Public Health, with her methodical records chronicling the earliest days of the epidemic. A drug technician at the Centers for Disease Control named Sandra Ford, who paid such close attention to the orders crossing her desk that she was the first person to alert the federal government to a new syndrome. Dr. Don Francis, the epidemiologist, who had fought smallpox and the Ebola virus in Africa and was damned if he was going to let up on AIDS. And—five years late, but better than never—the Surgeon General, Dr. C. Everett Koop.

Shilts’s book was published in 1987, and so many things have happened since then that it’s really remarkable how up-to-the-minute tense I was reading it. The biology of the disease is, of course, a major strand of the plot. Much of what we know today about the virus that causes AIDS is discovered in the course of this book, but some things were not known then. For example, one of the main diseases affecting people with AIDS is Pneumocystis pneumonia, caused by an organism that when Shilts was writing was thought to be “protozoa” found in rats. The species is now known to be a fungus, and distinct from Pneumocystis carinii. Shilts is writing about disease and sexual behavior, and a lot of this is not nice stuff to talk about at the dinner table—one of the reasons so little was done to help for so long. From start to finish, Shilts does a fantastic job of holding readers’ interest, making us understand the science, the politics, and the personal stories that make up an epidemic on this scale.

This was not, and is not, an uncontroversial book. Although it is only one of many subplots (and by no means the largest), Shilts’s story of Gaëtan Dugas, the Canadian flight attendant who was “Patient Zero” in early epidemiological research, was used as publicity to sell And the Band Played On. U.S. news media loved the story of the foreigner who brought AIDS to the United States—a single villain, so much easier to blame than the Reagan administration, self-aggrandizing U.S. scientists, or indeed themselves. (Shilts spends many more pages castigating the news media for their failure to investigate AIDS than he spends on Dugas).

Nowhere does Shilts claim that Gaëtan Dugas or any other individual brought the AIDS virus to North America, but the real epidemiological history—from Africa to Europe, and from Africa to North America via Haiti—was only incompletely understood in Shilts’s time. We now know that cases of HIV existed in the 1970s and even earlier—long before Dugas was sexually active. Dugas is characterized as willfully spreading the disease by continuing promiscuous sexual behavior. It is hard to forgive such acts with what we now know about the virus, but it didn’t make him unique, nor was this recklessness unknown among carriers of other venereal diseases. Ultimately, Dugas is not the villain of And the Band Plays On, if only because he, too, had an incomplete picture of what he was really carrying. He remained more or less healthy long after other men diagnosed at the same time were dying of AIDS; scientists were still squabbling about what this was and how it was transmitted. It’s clear from Shilts’s many portraits of people with AIDS that Dugas wasn’t the only one in denial about it.

One of the most heartbreaking parts of this story is how those trying to do good were frustrated at every turn. The Blood Sister Project of San Diego, for example, enlisted lesbians to donate blood, because lesbians were as low-risk as possible for disease; the blood was then used to help patients with AIDS.  The Assistant Secretary for Health, Dr. Edward Brandt, was scheduled to give the Blood Sister Project an award; he considered it “a worthy example of the kind of community program called for in President Reagan’s cry for more volunteerism.” But “pro-family” groups demanded Brandt’s firing if he even went to the event, since that would legitimize a lifestyle so repugnant that it could not even be named. The administration nixed his appearance. With the 1984 election coming up, Reagan’s people didn’t want any association with AIDS or gays--as if any number of votes from the Jerry Falwell camp could have swung the election to Mondale, who won exactly one state.

The relentlessly mounting body count, of which we are reminded again and again while AIDS is “allowed to happen” to the U.S., is not tragic--tragedy has an air of inevitability. This is angering because it was not inevitable. Shilts shows how the news media, in which he was the only American reporting on the epidemic full time, largely ignored the crisis for years, and when it did get into the act it stuck to the science angle and always insisted on some kind of hopeful ending. There was always a breakthrough just around the corner—except there wasn’t. Viruses are too hard to vaccinate against or cure (which is why we still have colds), and nobody wanted to pay for it anyway. Government was bad and the president would rather spend tax money on Central American death squads. When French scientists made a discovery, well, they were only French, so we didn’t hear about it for a year. And too many people at risk for AIDS—from gay and bisexual men to those using intravenous drugs—continued suicidal behavior long after they should have been educated out of it. (Any such statement, from Shilts or his contemporaries, was condemned as “anti-gay.”)

Of course, the U.S. was extremely anti-gay in the early 1980s, so none of those aspects of the book were news to me. What did surprise me was how long the nonprofit blood “industry” resisted any attempts to make its products safe, denying that it was possible to contract AIDS from a transfusion, or from the clotting products that patients with hemophilia relied on. I had assumed, when I lived through the period, that at the first sign of an “innocent” person getting AIDS—that is, not a homosexual or a drug user—the government and industry had leaped into action to protect people, but this was far from true. Thousands of people whose only risk factor for AIDS was a blood transfusion got sick and died needlessly. So did the female partners of drug users and their babies—ironically, more victims of homophobia, since part of the reason AIDS was not recognized in heterosexual women or babies for so long was that it was a “gay disease.” (This partly explains the bias against French scientists working on AIDS, too, since the French didn’t think of SIDA as a gay disease but as a disease that came from somewhere—a virus, West or Central Africa.)

It’s amazing how so many people resisted antibody testing, and other measures of AIDS control, for so many years. But have we really learned? Today, a terrifying proportion of U.S. parents refuse to get their kids vaccinated against basic childhood illnesses. File this under bottomless scientific illiteracy (see also climate change, evolution, and the dismantling of public education).

By the time Ronald Reagan made his first speech about AIDS, it was 1987. He still could not bring himself to say “gay” or make any acknowledgment of the burden homosexuals had borne—both of the disease and of the fight against it. But this is not a Republican versus Democrat story. In 1982, when the epidemic was still in its early stages, even the most supportive of any straight politician in the nation, San Francisco Mayor Dianne Feinstein, had vetoed a domestic partners’ ordinance. This law would have recognized the right to (among other things) visit your live-in lover in a city hospital, or take bereavement leave for his funeral. Perhaps the most damning sentence in this whole book is:
“In December 1982, at a time when gay people more than ever needed to be encouraged into relationships, they were told their partnerships were valueless by institutions that later scratched their heads and wondered why gays didn’t settle into couples when it was so clear their lives were at stake.”

The soul of a nation is laid bare by Shilts’s book, and many aspects of it are found wanting. But—at the risk of one of those hopeful endings he was so scornful of—it could have been worse. Gay Americans, already far from equal, feared that AIDS would lead to their being quarantined or even put in internment camps. There were plenty of homophobic attacks in the AIDS era, but the concentration camps never materialized. Shilts attributes this to Americans’ basic belief that it is wrong and unnatural for young people to die, so that sympathy welled up for thousands of twenty- and thirty-something men dying of a hideous disease—even though they were homosexual. Similarly, while there were stories of partners rejecting AIDS-infected men, and families throwing their “faggot” lovers out of the hospital room, in far more cases both chosen families and families of origin rallied around their sick and dying members. Many parents learned their son’s sexual orientation at the same time as his AIDS diagnosis. When faced with this deadly disease, its horrible manifestations, and the unsavory ways it was transmitted that no one wanted to talk about, by and large people chose to respond with love.

Randy Shilts would not let his doctor tell him the result of his own HIV test until the day he finished this book. He was afraid that it might bias the way he told the tale, and he was nothing if not a classic journalist—reporting the facts as he found them, no matter how unpopular. Shilts died of AIDS in 1994, just after finishing his third book, about gays and lesbians in the U.S. armed forces. Like those unacknowledged heroes, this journalist performed great service to his country.


Bob Haisman said...

Absolutely Great Blog J.E. ....I knew about this story but not this Book! Thanks for summary and great viewpoint -invaluable! UB

Bob Haisman said...

Absolutely Great Blog J.E. ....I knew about this story but not this Book! Thanks for summary and great viewpoint -invaluable! UB

J. E. Knowles said...

Thank you for reading!