In truth, Ford never uttered these words; he would shortly sign legislation providing federal loans to the city. This vital infusion, coupled with several billion dollars borrowed from union pension funds, reversed New York’s rush to bankruptcy—but at a cost. A wave of layoffs followed, with thousands of city workers losing their jobs. The subway fare, just raised from 20 to 30 cents in 1970, jumped to a half dollar, while the guarantee of free tuition at the city’s college system, the social escalator for generations of immigrants, disappeared. The new Bellevue, costing close to $200 million by most accounts, had made it just under the wire.
The project had consumed more than two decades. Guiding plans of this size through the maze of city bureaucracy became a nightmare of “picayune nitpicking.” Much like the experience with McKim, Mead & White in the early 1900s, city officials kept cutting the height of the building—from thirty-two stories to twenty-five—and complaining about the expensive “frills,” such as phone jacks and reading lights at the patients’ bedsides. But the biggest dispute concerned the definition of a “semi-private room.” It was clear that Bellevue’s traditional ward system, the relic of a bygone era, had to go. The initial design called for two patients to a room, but city officials demanded six, infuriating the project’s chief planner. “I resolved that…every element which smacked of the attitude that it is good enough for the poor or the medically indigent would be [opposed],” he wrote, adding that six patients to a room was to “semi-private” what a six-month pregnancy was to “semi-virgin.” The deadlock was broken by the passage of Medicare, which defined “semi-private” as no more than four patients to a room. Desperate for federal revenue, the city reluctantly caved in.
Dickinson Richards died a few months before the building opened, but André Cournand was there to see the vision come to life. With the top floors still unfinished, Bellevue’s psychiatric patients remained in the garish, decaying edifice built during the Jimmy Walker years. Each floor in the new building ran to an acre or more, with twenty elevators in operation. “The corridors are clean, wide, and glossy,” a critic remarked. “Neat signs direct the visitor to spacious rooms that yield stunning views of the river or the Manhattan skyline.” Lewis Thomas called it “a spectacular building”—a fitting home, he said, for “the most distinguished hospital in the country, with the most devoted professional staff.”
Still, a feeling prevailed that, new building or not, Bellevue’s eccentricities remained. As William Nolen, the distinguished surgeon, put it upon learning that the plans had actually gone through: “She resists improvements as her bacteria resist antibiotics….So let the city fathers…do their damnedest to destroy her personality and make her a replica of every other white, cold, sterile and efficient citadel of healing….I’m willing to bet that when the last new building has been built, the last technician hired, the last dollar spent, there will still be no scissors on Ward M5.”
17
AIDS
In November 1980, a man arrived at Bellevue with a fever and shortness of breath. He was given a chest X-ray, which showed “a little haziness, nothing dramatic,” and then a lung biopsy. “Surprise is too weak a word. We were floored,” Dr. Fred Valentine recalled. “The guy had pneumocystis pneumonia.”
An infectious disease specialist, Valentine had treated one other case of pneumocystis pneumonia (PCP) in recent years: a malnourished child with leukemia whose immune system had collapsed. The Bellevue patient was a thirty-four-year-old homosexual. A bluish purple blotch soon appeared near his shoulder blade and his T cell count—measuring the body’s defenses against microscopic invaders—plummeted. He fell into a coma.
Valentine prided himself on having seen it all. There wasn’t much, medically speaking, that didn’t pass through Bellevue. But a few days later, while treating a drug addict with a heavy cough and a fever, Valentine received the same laboratory results: “pneumocystis pneumonia with profound cellular immunodeficiency.” This was more than a coincidence, he thought: two apparent strangers, the same obscure diagnosis. Both men would soon be dead.
A few blocks north at NYU’s Dermatology Clinic, the nation’s largest, another mystery was unfolding. A man had come in with colored blotches on his feet. He’d recently been treated at a local hospital for swollen glands and an enlarged spleen. The dermatologist on duty, Alvin Friedman-Kien, did a biopsy. It revealed Kaposi’s sarcoma.
The natural response was to dismiss the case as an anomaly. Some things happen to the body that can’t be explained. Kaposi’s sarcoma (KS) is a skin cancer seen mostly in elderly men of Mediterranean descent and transplant patients on immunosuppressant drugs to prevent organ rejection. Its frequency among cancers is barely a blip.
But then a second case appeared at the clinic—a gay actor in his thirties with a purplish spot on his nose. “I suddenly began to take sexual histories, something nobody ever taught me in medical school,” Friedman-Kien recalled. “Asking about one’s personal sex life? I mean, [I’d] never asked anybody those questions. Nobody, not even a prostitute.”
A check of the NYU Cancer Registry showed only three cases of KS in the 1970s, none at Bellevue. Now they were streaming in by the week. On July 3, 1981, the New York Times ran a piece about the growing cluster—“Rare Cancer Seen in 41 Homosexuals”—by Lawrence Altman, one of the few science reporters with a medical degree. Relying heavily on the work of Friedman-Kien, Altman suggested a sexual link, reporting that many of the victims had engaged in “multiple and frequent” hookups in the city’s gay clubs and bathhouses. That same day, the CDC issued an alert regarding the spread of “opportunistic infections associated with immunosuppression in homosexual men.”
Among the patients Friedman-Kien examined was Gaëtan Dugas, the French-Canadian flight attendant later described as “patient zero” in the bestseller (and HBO movie) And the Band Played On by San Francisco journalist Randy Shilts, who, himself, would die from AIDS. The claim turned out to be false; Dugas didn’t bring AIDS to North America, though his boast of engaging in unprotected sex with hundreds of unsuspecting partners in dozens of different cities very likely was true. “I once caught him coming out of a gay bathhouse, and I stopped my car and said, ‘What are you doing there?’ ” Friedman-Kien remembered. “And he said, ‘In the dark nobody sees my spots.’ He was a real sociopath….[After that] I refused to see him. I was just so angry.”
Was this the tip of an iceberg? Friedman-Kien believed so. Joined by Bellevue oncologist Linda Laubenstein and others, he published the results of a study involving sixty homosexual patients: one group showing clear evidence of KS, PCP, or both; the other group symptom-free. “The variable most strongly associated with [these illnesses] was a larger number of male sex partners per year,” the authors concluded: the first group averaged sixty-one partners, the control group twenty-six. The first group also reported a higher incidence of herpes, syphilis, and enteric parasites. As the weeks passed, gay men began arriving at Bellevue with cancers of the mouth, tongue, larynx, retina, colon, penis, and rectum. All clinical indicators pointed to a devastating new disease.
Fred Valentine also feared the worst. In March 1982, city health officials compiled a list of the latest “surveillance figures” showing close to 160 people already hospitalized with rare infections and badly damaged immune systems. All but six were gay men. At the bottom of the page were two handwritten notations. The first, “amyl nitrate,” referred to a drug commonly used by these men to enhance the sexual experience. Perhaps it played a role. (It didn’t.) The second, “IVDU,” was shorthand for “intravenous drug user,” a category that would grow dramatically over time.
At first, medical researchers used the term “Gay-Related Immune Deficiency,” or GRID, to describe the cluster of symptoms, while the media dubbed it “Gay Cancer.” But as cases mounted among heterosexuals—Haitians, drug addicts sharing needles, hemophiliacs receiving blood transfusions—the condition was renamed Acquired Immunodeficiency Syndrome, or AIDS. No one yet knew how th
ese disparate groups were connected, if at all. In 1982, New York City reported 543 new cases. The only constant, at this point, was the mortality rate. The victims seemed all but certain to die.
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When the American Medical Association was created in 1847, the sorry spectacle of doctors refusing to treat epidemic victims—or worse, running away—was common literary fare. In his eighteenth-century novel A Journal of the Plague Year, Daniel Defoe had written: “Great was the reproach thrown upon those [London] physicians who left their patients during the sickness…they were called deserters.” Image and principle required a forceful stand from the infant AMA, and the result was a Code of Medical Ethics imploring its members “to face the danger [of pestilence] and continue their labours for the alleviation of the suffering, even at the jeopardy of their own lives.”
As research advanced, the worries of contagion receded. Vaccines, wonder drugs, and better sanitation tamed the worst outbreaks of the past, making medicine a much safer profession. The AMA revised its Code of Medical Ethics in the 1950s to reflect this reality, leaving doctors “free to choose whom to serve…and the environment in which to provide medical care,” barring unspecified “emergencies.” Then, out of nowhere, came AIDS. The comforting bubble of medical protection seemed to burst overnight.
Old questions resurfaced. What was required in perilous times? Should the stricter Code of Medical Ethics be revived? The AMA thought not. In a hairsplitting 1986 statement, its Council on Ethical and Judicial Affairs described AIDS in terms so uniquely threatening as to give hesitant colleagues what amounted to a free pass. “Not everyone is emotionally able to care for patients with AIDS,” the statement read, and no one should be forced to do so, despite medicine’s “long tradition” of facing epidemics “with compassion and courage.” Should a doctor choose to opt out, it added, “alternative arrangements for the care of the patient must be made.”
Actually, few physicians faced this dilemma because the vast majority of AIDS cases would be treated in the public hospitals of cities with large homosexual and drug-abusing populations. As late as 1990, almost a decade into the epidemic, a New Mexico workshop on strategies for treating AIDS attracted a single physician—one of 1,300 invitees. Even in liberal New York City, the Gay Men’s Health Crisis could find barely fifty doctors in private practice willing to put their names on a referral list for those with the disease.
Finances no doubt played a role. AIDS patients were often poor, and “private doctors won’t take people who don’t have health insurance and can’t pay upfront,” an activist complained. But studies showed safety concerns and personal prejudice to be even more important. “In refusing to deal with such patients,” a bioethicist wrote, “many physicians seem not merely to be saying, ‘Why should I risk my life?’ but rather ‘Why should I risk my life for the likes of homosexuals and intravenous drug abusers?’ ”
Doctors were hardly alone. Stories appeared of funeral directors refusing to embalm the bodies of AIDS victims and EMS workers ignoring calls in gay neighborhoods. A number of state dental associations recommended that nonroutine procedures for AIDS patients, such as bridgework and root canal, be postponed. And a poll of 350 New York City dentists showed “100 percent” of them opposed to treating someone with the disease—a major blow since several of the early warning signs of AIDS, including thrush, a fungal mouth infection, and leukoplakia, a colony of lesions along the gums and tongue, are easily flagged during a routine oral examination. For their part, dentists claimed to be especially vulnerable to dangerous viruses like hepatitis B, which they attributed to a diseased patient’s saliva. Why take a chance with something far more deadly?
In issuing its statement on AIDS, the AMA had assumed that two exceptions applied: first, an AIDS victim must never be denied treatment in a medical emergency, such as an automobile accident; second, the nation’s public hospitals would continue to admit AIDS patients, emergency or not. And nowhere were these exceptions more relevant than in New York City, which accounted for close to one third of the country’s AIDS cases by the mid-1980s, and where the disease would become the leading cause of death among men between the ages of twenty-five and forty.
As New York’s flagship public hospital, serving both the gay neighborhoods of Greenwich Village and the drug-plagued streets of the Bowery and the Lower East Side, Bellevue became the epicenter of the spreading epidemic. (St. Vincent’s and St. Clare’s, two Catholic hospitals in Manhattan with large gay populations, also provided essential AIDS care, with the consent of Cardinal John J. O’Connor.) The problem, early on, was the dearth of information. Nobody knew what precautions to take or how long the epidemic would last. “It had no name, no journals referenced it, no textbooks described it,” an intern recalled, adding: “we thought it would go away.”
With so many victims and so few facts, a sense of dread swept the hospital. Staffers balked at delivering food to AIDS patients, cleaning their rooms, and removing their waste. A nursing supervisor noted the pressures put upon her Bellevue colleagues by their own families. “They’d say, ‘You’re going to get AIDS’; or ‘Take a shower before you come home.’ Or ‘Wash your uniform there: don’t bring it home.’ ” One had only to pick up a local newspaper to read of “deadly germs” escaping the hospital and putting the entire city at risk. “JUNKIE AIDS VICTIM WAS HOUSEKEEPER AT BELLEVUE,” screamed the New York Post.
Of all the potential dangers, however, none compared to a “needle stick” from the blood-filled syringe of an AIDS patient, a not uncommon event. Statistics would show that the odds of acquiring the virus this way were quite slim—about 1 in 275 incidents, according to the Centers for Disease Control. Still, those who accidentally jabbed themselves faced months of uncertainty. “In an instant,” a nurse recalled, “all I could feel was a wave of fear.”
Reporters on the “AIDS beat” came to rely on frontline NYU/Bellevue doctors for clues to the medical mystery playing out. Whenever a major article appeared, a telling quote from Fred Valentine or Lawrence Friedman-Kien or Linda Laubenstein was likely to be in it. Laubenstein already counted close to one hundred AIDS patients in her private oncology practice, while Friedman-Kien’s dermatology clinic would diagnose its one thousandth case of Kaposi’s sarcoma in 1987, a marker no one could have imagined just a few years before.
Laubenstein’s role was particularly bittersweet. A polio survivor, paralyzed from the waist down, she’d graduated from Barnard College and NYU Medical School before doing her residency at Bellevue and accepting an NYU faculty position in 1983. Assigned back to Bellevue, a place she adored, Laubenstein would whiz through the halls on a motorized scooter, terrorizing staffers she suspected of “short-changing” her patients. “By the speed of the buzz, one could tell if Linda was on the warpath, and [we’d] duck into closets, or under desks or counters—anything to escape [her] wrath,” a resident recalled. Plagued by asthma and a heart condition, Laubenstein insisted on making house calls long after the practice had gone out of style. Friends would see her on a city bus, a doctor’s bag in her lap, crutches at her side, “sicker than most of her patients,” but always looking out for them.
At times, Laubenstein clashed with colleagues who thought her approach to AIDS “overly aggressive.” She made no apologies for employing medicine’s full arsenal, including chemotherapy, a controversial treatment for those with dangerously weakened immune systems. “She took wonderful care of her patients,” said Friedman-Kien. “But we disagreed; we fought a lot about the fact that as an oncologist everybody got chemotherapy….When we looked at an autopsy, she looked from her wheelchair and said, ‘No KS.’ I said, ‘Yeah, but Linda, he’s died of every opportunistic infection; we bumped him off.’ ”
What the two did agree upon was the devastating role of promiscuous, unprotected sex in spreading the disease. Laubenstein would soon be leading the charge to close down the city’s gay bathhouses—a move resisted by Mayor Ed Koch and resented in much of the homosexual community. Bu
t among her strongest allies was the playwright Larry Kramer, whose searing 1985 play about gay life in New York City, The Normal Heart, included a character named Emma Brookner, a brilliant, wheelchair-bound physician specializing in AIDS care and safe sex for gay men.
Laubenstein admired Kramer’s activism, but hated the script. “Someone suggested it might be because there were so many other doctors at [NYU/Bellevue] who were taking care of [AIDS] patients. And by singling her out, she felt I might be exploiting her because she was in a wheelchair, and hence more dramatic,” Kramer said, adding: “I confess to being guilty of this. I wanted to make a parallel with her…overcoming such a physical liability as a yardstick for the guys getting sick to see what courage can really be.”
Over the years, Emma Brookner would be played by Julie Harris, Barbara Bel Geddes, and Ellen Barkin (who won a Tony Award for Best Actress in the role). Hearing that Barbra Streisand had optioned the movie rights, intending to play the part herself, Laubenstein scornfully told a friend: “She’d better clip her damn nails if she’s going to do a rectal.” Laubenstein died of heart failure in 1992, at age forty-five, never having seen The Normal Heart on Broadway and not living long enough to grasp the impact of her pioneering work. In 2014, a movie version finally appeared on HBO, with Julia Roberts, not Streisand, in the lead. For those unaware of the history of AIDS in New York City, Kramer announced that “the part of Dr. Emma Brookner is based on Dr. Linda Laubenstein,” and “will, I hope, enshrine her legacy forever.”
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