People died while Reagan administration officials ignored pleas from government scientists and did not allocate adequate funding for AIDS research until the epidemic had already spread throughout the country. People died while scientists did not at first devote appropriate attention to the epidemic because they perceived little prestige to be gained in studying a homosexual affliction . . .
People died while public health authorities and the political leaders who guided them refused to take the tough measures necessary to curb the epidemic’s spread, opting for political expediency over the public health.
And people died while gay community leaders played politics with the disease, putting political dogma ahead of the preservation of human life.
… It is a tale worth telling, so that it will ever happen again, to any people, anywhere.
When I first read this book back in the 90s, I was most interested in the medical aspects, and secondarily in the politics. Over the years, I became quite fond of some of the people who appear within – and enraged with others. Because, although this is a work of journalism filled with details of budget battles and political wrangling, it’s also an engaging narrative, using recurring motifs, highly personal stories, and occasional lyricism to enhance its readability for the general public.
The Bicentennial Parade of Tall Ships in New York begins the book, and is referred to several times thereafter as a possible beginning to the epidemic, at least in the US. This theory seems to still be considered; a casual google didn’t turn up anyone objecting to it.
July 4, 1976
New York Harbor
Tall sails scraped the deep purple night as rockets burst, flared, and flourished red, white, and blue over the stoic Statue of Liberty. The whole world was watching, it seemed; the whole world was there. Ships from fifty-five nations had poured sailors into Manhattan to join the throngs, counted in the millions, who watched the greatest pyrotechnic extravaganza ever mounted, all for Americas 200th birthday party. Deep into the morning, bars all over the city were crammed with sailors. New York City had hosted the greatest party ever known, everybody agreed later. The guests had come from all over the world.
This was the part of the epidemiologists with later note, when they stayed up late at night and the conversation drifted toward where it had started and when. They would remember that glorious night in New York harbor, all those sailors, and recall: from all over the world they came to New York.
The Feast of the Hearts, a Danish tradition, ties together with the 1977 death of a Danish physician who worked in a clinic in Zaire (today’s Democratic Republic of the Congo). She may have been the first European, first Westerner, to die of the disease, though it mystified doctors. A friend and physician wanted to study Pneumocystis after she died, but was discouraged from doing so because it was so rare; his tropical disease research later points to an African virus, which is, as I understand it, the current theory. The recurrence of the Feast of the Hearts is one of the most touching echoes of the book.
Another effective trope is Before and After, both as an overall structure and in the lives of various people who came to realize, at varying times, that this was not something that would go away in a few months.
….Before and after. The epidemic would cleave lives in two, the way a great war or depression presents a commonly understood point of reference around which an entire society defines itself.
Before would encompass thousands of memories laden with nuance and nostalgia. Before meant innocence and excess, idealism and hubris. More than anything, this was the time before death. To be sure, death was already elbowing its way through the crowds on that Sunday morning, like a rude tourist angling for the lead spot in the parade. It was still an invisible presence, low, palpable only to twenty, or perhaps thirty, gay men who were suffering from a vague malaise. This handful ensured that the future and the past met on that single day.
Then there are the personal stories. Some are of the major players: Bill Krauss, Cleve Jones, Larry Kramer, told alongside more journalistic accounts of their actions. Or Paul Popham, who presents a complicated picture (an activist who is closeted in his work life) but watches friends who shared a house on Fire Island with him one summer die one by one:
A year ago, he had come here with the ashes of his friend Rick Wellikoff. It had been a sunny, melancholy day, warmed by the sharing of grief with Rick’s surviving lover and friends. Now, Rick’s lover was ailing too, the fourth person from the house on Ocean Walk to be stricken by this new plague, and Paul was alone with the ashes of Jack Nau.
The cold white fingers of the sea stroked the indifferent sand, littered by a winter’s worth of misshapen flotsam. Paul open to the box and shook. The sea’s fingers reached to grab Jack’s ashes and pull them into the brine. Paul gazed out to where the leaden sky met the gray Atlantic and wondered when it would all end. This can’t be happening, he thought, it’s simply too unbelievable. Yet, as he shook the last of the bone dust that was once Jack Nau into the sea, Paul knew that it was happening and it was all too believable.
Some are practicing physicians who watched patient after patient get sick and die. Some are public health officials, who fought the good fight against a unopposable foe for every small victory they could achieve. And some are just people caught in the crossfire. People like a woman who goes in for hip surgery and refuses a post-op blood transfusion, unaware she’d been transfused while under anesthesia. She later learns she has AIDS from a newspaper story. People like a kid from the midwest who came to San Francisco to get away from bigotry, but favored close relationships instead of the bathhouse scene. People like a flight attendant who refused to believe his KS was contagious so entered into three-city sexual liaisons with gusto, only to be labeled (incorrectly, as it turned out) Patient Zero.
And Rock Hudson, whose death somehow changed everything.
I chose to include this book in this year’s Re-Reading Project primarily because of COVID-19; that my reading fell during Pride Month was a happy coincidence. I’m well aware that AIDS and the corona virus are very different diseases and the epidemics have vastly differing courses and effects, but I wondered if reading in this moment showcased any similarities. Boy, did it. To wit:
The conflict between public health and politics\profit, with public health on the losing side most of the time. In the case of AIDS, this was most specific to shutting down the bathhouses (which both the gay community, and the bathhouse owners, vehemently opposed) and keeping the blood supply safe by banning donations from gay men (which, again, was opposed by blood banks and by the gay community). Shilts makes the community opposition to these measures seem more understandable by rooting them in the time, when gayness was far less accepted than it is now (and let’s face it, it’s not exactly popular in a lot of places even today) and owning one’s sexual preference was a new freedom in places like San Francisco. With COVID, there were early assurances from the highest levels of the Federal Government that this was “just the flu” and panic wasn’t necessary, to forestall an economic slowdown. Six hundred thousand deaths later, there are probably those who still feel that way.
Poor communication from medical experts to the public, even when the attempt to communicate was genuine. To my surprise, Anthony Fauci turned up in this category. He was just a name the first six or seven times I read the book, but of course he’s practically a celebrity now. In the early 80s, while considered a hero dealing with the epidemic on public health grounds, he made a comment about household contact, then walked it back as being out of context and remarked that the public didn’t understand the language of science.
This eerily parallels his early remarks on the inefficacy of face masks – which he also walked back as being out of context and in reaction to the shortage of protective equipment for hospital personnel. Even heroes trip over their feet sometimes.
Political animosities and personal grudges became higher priority than health. The most grotesque example of this from the 80s comes from a San Francisco newspaper editor, outraged when a group of gay readers wrote a letter calling for his resignation over poor coverage of the epidemic.
Paul Lorch decided to exact his own revenge. He took the letter demanding his termination and the list of all the people who signed it, and set it aside. One by one, as they died, he crossed their names off the list, gtting the last laugh, so to speak.
I usually think I’ve seen enough of this world to no longer be surprised by any depravity, but this shocked me.
Denial, willingness to believe hoaxes and rumors. This was not just a problem in the general public; for a year or so, much of the medical and research community did not believe the cause of the various illnesses could be a single virus, and a new virus at that. A significant portion of the gay community didn’t believe the disease – which at first appeared as Kaposi’s sarcoma – was contagious at all. Fear of homophobic reprisals kept a lot of the medical information more restrained than it should have been. As for COVID, I don’t have to go into it, do I? From “just the flu” to “the vaccine makes you magnetic,” it’s been a wild ride.
Perception of victims as unimportant.
The NCI conference fueled Gottlieb’s suspicion that no one cared because it was homosexuals who were dying. Nobody came out and said it was all right for gays to drop dead; it was just that homosexuals didn’t seem to warrant the kind of urgent concern another set of victims would engender. Scientists didn’t care, because there was little glory, fame, and funding to be had in this field; there wasn’t likely to be money or prestige as long as the newspapers ignored the outbreak, and the press didn’t like writing about homosexuals. So nobody cared….
This might not seem to have much to do with COVID, but I remember a lot of talk about old and sick people who would’ve died anyway. It’s amazing how callous we can be when the stock market is our only metric.
The federal government’s unwillingness to spend money or take any role at all. Shilts outlines this with exquisite clarity: the CDC couldn’t provide airfare for epidemiologists to visit outbreaks and interview patients; even a textbook was out of the question, a virology lab, with the necessary precautions, was a pipe dream. Another agency waited two years for a centrifuge to conduct basic experiments. When pressured, officials lumped together all kinds of spending as being related to AIDS, though the link was tenuous at best, and insisted everyone had enough money. Remember the bidding war over respirators and PPE in the early months of COVID, because the Feds let the states fight it out? The vaccines started out that way as well but fate intervened in the form of an election. In January 2021, when the vaccines were first approved, my local health service predicted my age group (65 to 70) would be eligible in June or July. The feds got involved in late January, made vaccination a priority, and I got my shots in March. Elections matter.
I confess, I started skimming around page 400. There is a certain repetitiveness to the major themes: lack of action, lack of money, inability to convince the community of the danger, divisions within both the public and the research communities. The fight between NIH and the Pasteur Institute, as well as the CDC, is the stuff of legend, and shows the worst side of some people. Every time I’ve read the book, I’ve become lost in the timeline, though it’s clearly indicated nearly on every page and chapters are separated by the year in which they occur. Still, it has a sameness, with escalating numbers.
It’s a monumental work of journalism, covering three cities in detail, plus a host of government agencies, health facilities, and ordinary lives. Yet it’s the humanity that makes it a beautiful read. Shilts, a gay man, decided not to find out his HIV status until he’d finished the book, in the interests of journalistic integrity.
“HIV is certainly character-building. It’s made me see all of the shallow things we cling to, like ego and vanity. Of course, I’d rather have a few more T-cells and a little less character.
Randy Shilts, NYT interview, 1993
The book was published in 1987. He died in 1994 at the age of 42.