The Emperor of All Maladies: A Biography of Cancer (60 page)

By the late summer of that year, as the coastal cities sweltered in a heat wave, the CDC began to sense that an epidemiological catastrophe was forming out of thin air. Between June and August 1981, the weather vane of strange illnesses swung frantically around its pivot: additional clusters of PCP, Kaposi’s sarcoma, cryptococcal meningitis, and rare lymphomas were reported in young men in cities throughout America. The common pattern behind all these diseases, aside from their disproportionate predilection for gay men, was a massive, near-total collapse of the immune system. A letter in
Lancet
called the disease “
gay compromise syndrome
.” Others called it GRID (gay-related immune deficiency) or, more cruelly, gay cancer.
In July 1982, with an understanding of the cause
still missing, the disease finally stumbled upon its modern name, acquired immunodeficiency syndrome, or AIDS.

Twinned conspicuously at this birth, the trajectories of AIDS and cancer were destined to crisscross and intersect at many levels. And it was Sontag, again, writing piercingly from her New York apartment (from whose terraced windows she could observe the AIDS epidemic whirling through the streets of Chelsea below), who immediately recognized the symbolic parallels between the two diseases.
In a trenchant essay written as a reply
to her earlier
Illness as Metaphor
, Sontag argued that AIDS, like cancer, was becoming not just a biological disease but something much larger—a social and political category replete with its own punitive metaphors. Like cancer patients, AIDS patients were also paralyzed and shrouded by those metaphors—stripped bare, like the cancer patient in Solzhenitsyn’s
Cancer Ward
, then forced to don the ghoulish uniform of their disease. The stigmas attached to cancer—guilt, secrecy, shame—were recycled and refitted for AIDS, acquiring tenfold force and potency:
sexual
guilt,
sexual
secrecy,
sexual
shame. If cancer, as Sontag had once argued, was perceived as the product of spoiled germ, of biological mutability gone wild, then AIDS was the result of contaminated germ, of social mutability gone wild: men unmoored from the usual conventions of society, metastasizing from coast to coast on airplanes, carrying disease and devastation within them. A patient afflicted with AIDS thus evaporated from individual existence and morphed instantly into an imagined archetype—a young gay man, fresh out of the bathhouses, defiled and ravaged by profligacy, now lying namelessly in the hospital wards of New York or San Francisco.

Sontag concerned herself with metaphorical parallels, but down in those wards, the medical battles also paralleled the battles fought against can
cer. In the early days, among the first doctors to encounter and treat AIDS patients were oncologists. One of the “sentinel” diseases of immunodeficiency was Kaposi’s sarcoma, an explosive variant of an indolent cancer that had appeared without warning on the bodies of young men. In San Francisco, at the epicenter of the epidemic, the first clinic to be organized for AIDS patients was thus a sarcoma clinic that began to meet weekly beginning in September 1981 led by a dermatologist, Marcus Conant, and an oncologist, Paul Volberding. Volberding personified the crisscrossing fates of the two diseases. Trained as an oncologist at the University of California, San Francisco, he had spent a rather disappointing stint in the laboratory studying mouse retroviruses and, frustrated, switched from the lab to clinical oncology at San Francisco General Hospital.

For Volberding, and for many of his earliest
patients, AIDS
was
cancer. To treat his sarcoma patients, Volberding borrowed various chemotherapy regimens from the NCI’s protocols.
^*
But more than chemotherapy protocols,
Volberding borrowed something more ineffable
—an ethos. At San Francisco General, at the end of a long linoleum-floored corridor with chipped paint on the walls and naked lightbulbs dangling from wires, Volberding and his team created the world’s first AIDS ward, called Ward 5B, which was explicitly modeled after the cancer wards that he had seen as a fellow. “
What we did here
,” he recalls, was “exactly like an oncology unit, but with a different focus, AIDS. . . . But it really was modeled on oncology units, where you have complex medical diseases with a lot of psychosocial overlay, a lot of use of drugs that are complex and require a sophisticated nursing staff and psychosocial support staff.”

Nurses, many of them gay men, gravitated to Ward 5B to tend their friends (or returned poignantly, as the epidemic bloomed, as patients themselves). Doctors reinvented medicine here, pitting their wits against a hostile, mysterious disease that they couldn’t quite fathom that was plaguing a community that they didn’t quite understand. As the patients boiled up with bizarre, spectral fevers, rules were unshackled and reinvented, creating a ward that came to resemble the unorthodox lives of the men who inhabited it. Fixed visiting hours were eliminated. Friends, companions, lovers, and family members were allowed, even encouraged, to sleep overnight in accompanying cots to help patients through those burn
ing, hallucinatory nights. On Sunday afternoons, a San Francisco dancer catered elaborate brunches featuring tap dancing, feather boas, and marijuana-laced brownies. Farber may not have envisioned these particular innovations, but this, too, in a community drenched with grief, was its own, inimitable interpretation of “total care.”

Politically, too, AIDS activists borrowed language and tactics from cancer lobbyists, and then imbued this language with their own urgency and potency.
In January 1982, as AIDS cases boomed
, a group of six men founded Gay Men’s Health Crisis in New York, a volunteer organization dedicated to fighting AIDS through advocacy, lobbying, campaigning, and protest. Early volunteers decamped outside discos, bars, and bathhouses soliciting donations and distributing posters. From its office in a crumbling Chelsea brownstone, GMHC coordinated an extraordinary national effort to bring AIDS awareness to the masses. These were the Laskerites of AIDS, albeit without the gray suits and pearls.

The seminal scientific breakthrough in the AIDS epidemic was, meanwhile, unfolding in a laboratory at the Institut Pasteur in Paris.
In January 1983, Luc Montagnier’s group
found the sign of a virus in a lymph node biopsy from a young gay man with Kaposi’s sarcoma and in a Zairean woman who had died of immune deficiency. Montagnier soon deduced that this was an RNA virus that could convert its genes into DNA and lodge into the human genome—a retrovirus. He called his virus IDAV, immuno-deficiency associated viruses, arguing that it was likely the cause of AIDS.

At the National Cancer Institute, a group led by Robert Gallo was also circling around the same virus, although under a different name. In the spring of 1984, the two efforts converged dramatically.
Gallo also found a retrovirus
in AIDS patients—Montagnier’s IDAV. A few months later, the identity of the virus was confirmed by yet another group in San Francisco.
On April 23, 1984, Margaret Heckler
, the Health and Human Services secretary, thus appeared before the press with a bold statement about the future of the epidemic. With a causal agent in hand, a cure seemed just a few steps away. “The arrow of funds, medical personnel, research . . . has hit the target,” she said. “We hope to have a vaccine ready for testing in about two years. . . . Today’s discovery represents the triumph of science over dread disease.”

But AIDS activists, facing the lethal upswirl of the epidemic that was decimating their community, could not afford to wait.
In the spring of 1987
, a group of volunteers splintered away from GMHC to form a group
named the AIDS Coalition to Unleash Power, or ACT UP. Led by a sardonic and hyperarticulate writer named Larry Kramer, ACT UP promised to transform the landscape of AIDS treatment using a kind of militant activism unprecedented in the history of medicine. Kramer blamed many forces for aiding and abetting the epidemic—he called it “
genocide by neglect
”—but chief among the neglecters was the FDA. “
Many of us who live in daily terror
of the AIDS epidemic,” Kramer wrote in the
Times
, “cannot understand why the Food and Drug Administration has been so intransigent in the face of this monstrous tidal wave of death.”

Symptomatic of this intransigence was the process by which the FDA evaluated and approved lifesaving drugs for AIDS, a process that Kramer characterized as terminally lazy and terminally slow. And terminally gaga: the slow, contemplative “academic” mechanism of drug testing, Kramer groused, was becoming life-threatening rather than lifesaving. Randomized, placebo-controlled trials were all well and good in the cool ivory towers of medicine, but patients afflicted by a deadly illness needed drugs
now
. “
Drugs into bodies
; drugs into bodies,” ACT UP chanted. A new model for accelerated clinical trials was needed. “
The FDA is fucked-up
, the NIH is fucked-up . . . the boys and girls who are running this show have been unable to get whatever system they’re operating to work,” Kramer told his audience in New York. “
Double-blind studies
,” he argued in an editorial, “were not created with terminal illnesses in mind.” He concluded, “AIDS sufferers who have nothing to lose, are more than willing to be guinea pigs.”

Even Kramer knew that that statement was extraordinary; Halsted’s ghost had, after all, barely been laid to rest. But as ACT UP members paraded through the streets of New York and Washington, frothing with anger and burning paper effigies of FDA administrators, their argument ricocheted potently through the media and the public imagination. And the argument had a natural spillover to other, equally politicized diseases. If AIDS patients demanded direct access to drugs and treatments, should other patients with terminal illnesses not also make similar demands? Patients with AIDS wanted drugs into bodies, so why should bodies with cancer be left without drugs?

In Durham, North Carolina, a city barely touched by the AIDS epidemic in 1987, the sound and fury of these demonstrations may have seemed like a distant thunderclap. Deeply ensconced in his trial of megadose chemotherapy at Duke University, William Peters could not possibly have predicted
that this very storm was about to turn south and beat its way to his door.

The STAMP regimen—mega-dose chemotherapy for breast cancer—was gathering momentum day by day.
By the winter of 1984, thirty-two women
had completed the Phase I “safety” study—a trial designed to document whether STAMP could safely be administered. The data looked promising: although clearly toxic, selected patients could survive the regimen. (Phase I studies are not designed to assess efficacy.) In December that year, at the fifth annual Breast Cancer Symposium in San Antonio, Texas, there was abundant optimism about efficacy as well. “There was so much excitement within the cancer community that some were already convinced,” the statistician Donald Berry recalls. Peters was his typically charming self at the conference—boyish, exuberant, cautious, but inveterately positive. He called the meeting a “small victory.”

After San Antonio, the early-phase trials gathered speed. Emboldened by the positive response, Peters pushed for evaluating STAMP not just for metastatic breast cancer, but as an adjuvant therapy for high-risk patients with locally advanced cancer (patients with more than ten cancer-afflicted lymph nodes). Following Peters’s initial observations, several groups across the nation also hotly pursued megadose chemotherapy with bone marrow transplantation. Two years later, with early-phase trials completed successfully, a randomized, blinded, Phase III trial was needed. Peters approached the Cancer and Leukemia Group B (CALGB), the centralized group that acted as a clearinghouse for clinical trials, to sponsor a definitive multicenter, randomized clinical trial.

On a winter afternoon,
Peters flew up from Duke to Boston
to detail a STAMP trial to the CALGB for its approval. As expected, vicious arguments broke out in the room. Some clinicians still contended that STAMP was, in fact, no different from cytotoxic chemotherapy taken to its extreme brink—stale wine being sold in a new bottle. Others contended that the chemotherapeutic battle against cancer
needed
to be taken to the brink. The meeting stretched hour upon hour, each side hotly debating its points. In the end, the CALGB agreed to sponsor the trial. Peters left the conference room on the sixth floor of the Massachusetts General Hospital feeling bewildered but relieved. When the hinged saloon door of the room swung closed behind him, it was as if he had just emerged out of a nasty barroom brawl.

*
The notion of using a “cocktail” of drugs against HIV was borrowed from oncology—although it would be several years before anti-HIV drugs were available.

Oedipus: What is the rite of purification
? How shall it be done?

Creon: By banishing a man, or expiation of blood by blood.

—Sophocles,
Oedipus the King