2.11/The Historical Frame/The Decade in Events and Forces

The Aftermath, 1996–2001

The Cocktail

The drugs the line item governed had been eight years arriving. AZT, approved in 1987, was joined across the early 1990s by ddI, ddC, and d4T, and the drugs, used alone or in shifting pairs, bought months rather than years before the virus mutated around them. An infectious-disease physician in New York, keeping his own private count, logged thirty-seven patient deaths in his practice in 1995 alone — one year, one doctor, one practice’s caseload.² The AIDS ward at St. Vincent’s ran at capacity that year, as it had for most of the decade before it.

The Food and Drug Administration approved saquinavir, marketed as Invirase, on December 7, 1995 — ninety days after Hoffmann-La Roche filed its application, a record turnaround for a genuinely new class of drug.³ It was the first protease inhibitor, a compound that blocked an enzyme the virus needed to assemble new copies of itself, and it arrived after eight years in which the only approved treatments — AZT, then ddI, then ddC, then d4T, then 3TC — had slowed the disease without stopping it, working alone or in pairs until the virus mutated around them. In late January 1996, at a retrovirus conference in Washington, Abbott Laboratories reported that its own protease inhibitor, ritonavir, taken together with two of the older drugs, cut mortality in a clinical trial by half.² The FDA approved ritonavir on March 1, 1996,⁴ and Merck’s indinavir twelve days after that, and by spring a shorthand had entered clinical use — the “cocktail,” two reverse-transcriptase drugs plus one protease inhibitor, later formalized as HAART, highly active antiretroviral therapy. Given in combination, the three drugs prevented the virus from mutating fast enough to escape all of them at once, the way it had escaped each of them alone.

The results showed first in the mortality count. AIDS deaths in New York City fell 29 percent in 1996, to 4,998, then 47 percent further the following year, to 2,625 — a two-year drop with no precedent in the epidemic’s history.⁵ The full data behind the numbers arrived that summer at the International AIDS Conference in Vancouver, where researchers presented a year’s worth of patients whose viral loads had stayed undetectable and whose immune systems, by every clinical measure, were rebuilding. Time closed out the year by naming David Ho, the Aaron Diamond AIDS Research Center director who had led the combination-therapy trials, its Person of the Year.⁶

The clinical name for what happened next was the Lazarus syndrome; among patients it went by a plainer phrase, the second life. People who had been gaunt, oxygen-tethered, and settling their affairs put on weight within weeks and went back to jobs they had already given notice on. Bob Doyle, a New Yorker living with the virus, described his own year this way: “It was the year I sold my life insurance policy, the year I was supposed to die, and the year that too many declared the end of AIDS.”⁷ By 1997 the caseload at Gay Men’s Health Crisis, which had grown without pause for fifteen years, leveled off for the first time. Not everyone reached the turn, and not everyone who reached it reached it in time. Pedro Zamora, the young AIDS educator who had become the first openly HIV-positive cast member on American reality television, had died in Miami in November 1994 — he missed the drugs’ arrival by about a year. The artist Felix Gonzalez-Torres died on January 9, 1996, before saquinavir had reached more than a handful of patients; the sculptor Greer Lankton died that November, after it had. Both were thirty-eight.

None of it arrived without cost, or without a cost unevenly distributed. The three-drug regimen cost up to $25,000 a year in 1996 dollars.¹ Crixivan caused kidney stones in a meaningful share of patients, and ritonavir’s side effects — nausea, diarrhea, a metallic taste some patients described as constant — drove others off the regimen entirely. Over the months that followed, fat under many patients’ skin migrated from the limbs and face toward the abdomen and the back of the neck, a redistribution with a clinical name, lipodystrophy, and a pair of names that circulated at parties, Crix belly and buffalo hump. The hollowed cheeks that came with it made a decade of survival visible on a face at a glance — not the mark of the disease, but the mark of the drugs that had beaten it back.

”When Plagues End”

On November 10, 1996, the New York Times Magazine ran Andrew Sullivan’s essay “When Plagues End” as its cover story, the cover built around a design conceit — blurred type resolving into clear print — meant to evoke the sensation the piece described.⁹ Sullivan, a former editor of The New Republic and HIV-positive himself, had watched his own viral load go undetectable on combination therapy months earlier. He argued that the epidemic, as plague — as an emergency organizing daily life around imminent death — was over for people in his position, and that gay life in America now had to reckon with a fact it had not had to hold since 1981: survival, and what came after it. His claim went further than relief. A culture organized for fifteen years around urgency and mourning — around the funeral as a civic form, around a permanent state of emergency that had shaped friendship, sex, and ambition alike — now had to invent whatever replaced that organizing structure, and Sullivan, by his own account, did not yet know what that would look like.

The reaction did not soften with time. Michelangelo Signorile, the ACT UP veteran and columnist, argued — then and for years afterward — that Sullivan had mistaken his own narrow case — a white, insured, well-connected gay man with access to the country’s best HIV clinicians — for the whole of a disease that remained, for most of the people carrying it, exactly the emergency it had always been.¹⁰ The objection was not abstract: thirty-five states were not yet paying for the drugs that had changed Sullivan’s own prognosis. Critics argued that a declaration of victory, printed on the cover of the country’s most influential magazine, would cost lives among readers too young or too far from the story to know any different — a relaxation of caution in exactly the population still most exposed.

The years that followed gave the critics most of the argument. New HIV diagnoses among young gay men began climbing again within a few years of the piece’s publication, alongside a documented loosening of safer-sex practice. But Sullivan was not simply wrong. For a New Yorker who had spent the previous decade organizing a life around the certainty of an early death, 1996 had genuinely changed what needed organizing around, and pretending otherwise would have been its own kind of dishonesty. The argument that followed the piece was not a dispute between a true position and a false one. It was a dispute between two honest accounts of the same year, produced by two men standing in different places inside it. Both men had earned the right to be believed, and neither had earned the right to speak for the other’s experience of the same disease.

The piece also did something more mundane, and more consequential for magazines built like Meridian’s peers: it gave newsroom editors a respectable reason to conclude that AIDS coverage had reached its natural end point. Editors did not need to argue that AIDS no longer mattered. They needed only to note that the country’s most credentialed HIV-positive writer had said, in the country’s most read magazine, that the worst was over.

The Beat Nobody Assigned

Magazine and newspaper coverage of AIDS in the United States had climbed steadily through the 1980s, peaked around 1993 to 1995, and then, starting in 1996, fell — not gradually, but at something closer to a collapse. By decade’s end the disease drew a fraction of the column inches it had drawn five years earlier.

No single cause explains the drop. Death rates were falling fastest exactly among the population that had produced the epidemic’s most visible chroniclers — gay, white, urban, media-connected — so the story read, in strictly newsroom terms, as less urgent to the audience assumed to be reading it. The activist infrastructure that had spent a decade generating actions, quotes, and images for reporters to cover was contracting for reasons of its own. And the magazine industry that had carried so much of the epidemic’s serious coverage was, by the last years of the decade, absorbed in an anxiety of its own — falling ad pages, a new claim on readers’ attention arriving from Silicon Alley, budgets with no room for a beat whose principal newsmaker kept saying, unhelpfully for headline purposes, that things were better now. The dot-com crash of March 2000 pulled ad pages down further still, and a beat with no dramatic new development to report competed poorly against sections built to chase the advertising dollars Silicon Alley had briefly promised.

The editorial mechanism by which a subject like this left a magazine rarely involved a decision anyone signed. A story did not get killed so much as it stopped getting pitched, and then stopped occurring to anyone as a pitch, and then the writer who had filed AIDS pieces on a regular rotation moved to another beat, and an editor who might once have asked where the AIDS piece was for the cycle no longer thought to ask. Nobody announced the subject closed. It went quiet, one missed assignment at a time. What coverage remained migrated off the page entirely, onto early blogs, mailing lists, and the POZ website — a readership the glossy magazines had never learned to follow.

The decline in coverage tracked the decline in New York City’s own death rate closely enough to look, at a glance, like the same curve. It was not. Among Black and Latino New Yorkers, the fall in AIDS deaths after 1996 was real but slower than among white New Yorkers, and among the city’s incarcerated, undocumented, and intravenous-drug-using populations the crisis continued in something closer to its original terms — without the drugs reliably reaching people who had no stable address for a pharmacy to mail them to, no insurance card, and in some cases no legal standing to seek either.¹¹ By the decade’s end the epidemic’s American center of gravity had begun shifting toward the rural South, to communities the national press had never built the infrastructure to cover in the first place. New York, which had spent fifteen years as the country’s AIDS capital by every metric a newsroom used, no longer led either the coverage or the count.

The Room Gets Smaller

The Monday-night meeting of the AIDS Coalition to Unleash Power had drawn close to a thousand people at its peak in 1989 and 1990.¹² By 1998 it drew fewer than a hundred. Some of the falloff was ordinary — any movement built around a single galvanizing threat contracts once the threat changes shape, and some of ACT UP’s founding generation was dead. But much of the contraction was a victory turning into an ending. The Treatment and Data Committee’s decade of pressure on the FDA’s approval process — the parallel track, the accelerated approval based on surrogate markers, the direct seat at the table for patient-researchers — had produced exactly the regulatory transformation it set out to produce, and the protease inhibitors that resulted had removed the single most urgent reason to be in the room.¹³ The political climate had shifted as well: the Clinton administration was, by most measures, friendlier to AIDS funding and research than the one that preceded it, even as its promises on needle exchange went unmet and its 1996 welfare law fell hardest on the HIV-positive women it also cut loose.¹¹ A negotiating table that had not existed in 1987 existed by 1997, and it drew activists away from street protest and toward the agencies themselves. The political funeral — Mark Lowe Fisher’s open coffin, carried in the rain from Judson Memorial Church on Washington Square South, up Sixth Avenue, to the Bush campaign’s Manhattan headquarters in 1992, Bob Rafsky’s “Bury Me Furiously” eulogy delivered there (“George Bush, we believe you’ll be defeated tomorrow”) — had been among the movement’s most demanding forms of action, and it did not survive the turn either; fewer people were dying, and fewer people were left demanding that their own bodies be marched to make the point.¹² Some of what the Monday meeting had generated did not disappear so much as relocate: the treatment-data expertise moved with Mark Harrington and Peter Staley, who had built Treatment Action Group in 1992,¹⁴ and the housing advocacy moved with Keith Cylar, Charles King, Eric Sawyer, and Virginia Shubert, who had built Housing Works in 1990 on revenue from a chain of thrift stores across Manhattan and Brooklyn,¹⁵ both organizations already running independently by the time the parent meeting’s numbers thinned — and both, on occasion, targets of the same suspicion of “the AIDS establishment” that GMHC had drawn once its own annual budget ran into the tens of millions.

Cardinal John O’Connor, the last of the period’s major AIDS-policy antagonists still active in the city, died in 2000. Across town, the Center’s Monday meeting still convened, smaller, still voting by show of hands, still reading the names of the dead at the top of the evening, though there were fewer names to read.

On September 3, 2001, the critic Pauline Kael died. By the morning of September 10, AIDS in New York had changed on every measure that counted it, without any single announcement marking the change.

The next morning, St. Vincent’s — the acute-care hospital positioned closest to lower Manhattan — became the primary trauma center for the September 11 attacks. Nurses who had spent a decade on the seventh-floor AIDS ward were pulled into the emergency room for what the hospital’s own staff later called their war-medicine experience; the hospital treated more than eight hundred survivors that day.²⁰ The AIDS ward and the terrorist attack, the two defining catastrophes of the same stretch of New York history, met inside the walls of the same building on the same morning, and neither one commented on the other.

By the end of that year, the epidemic’s cumulative death toll in New York City had passed seventy-five thousand. The annual rate had fallen to roughly a fifth of its 1995 peak.²¹ The crisis, as the emergency that had organized fifteen years of the city’s private and professional life, was over for most of the people who had once organized their lives around it. For the rest, it went on, mostly out of view, a condition rather than a crisis, managed by people who no longer expected anyone outside their own hospital floor to be watching.