2—
The Search for a Cure

The search for a cure for AIDS has raised important ethical questions about access to drugs and experimentation with new medication. Some PWA organizations, for example, demand full access to all drugs that show any therapeutic benefit; others have even rejected the distinction between experiment and therapy altogether.^[1] One of the founding motives of ACT UP, according to its founder, gay writer Larry Kramer, was to get drugs into the bodies of PWAs.^[2] While treatment by orthodox medicine has vastly improved since the beginning of the epidemic, in 1994 biomedicine still cannot offer predictable control over AIDS, much less any therapy that amounts to a decisive cure. Given the desperation of PWAs for a cure, it is not surprising that quackery has found a thriving business. PWAs have sought relief in diverse and unlikely nutritional regimens, exercise programs, blood-heating techniques, faith healing, and assorted psychodynamic approaches. They have sought cures wherever there is hope for sale. By contrast, some policy analysts have called for more stringent control over access to drugs and more reliance on the "gold standard" of double-blind trials, which include control groups receiving no drug, only a placebo, as a means of demonstrating the actual efficacy of drugs under experimental review.^[3] Critics of an open-access drug policy decry as futile any pharmaceutical research and treatment carried out on an ad hoc basis, and they insist on the importance of painstaking standards of biomedical research as the only pathway toward progress, even if that progress amounts merely to consumer protection

from useless and dangerous "remedies," even if that progress cannot promise to secure the life of anyone now living with AIDS.

Narratives by and about PWAs are less sanguine about the process and progress of orthodox medicine. In these accounts the search for a treatment is always obstinate, often quixotic, sometimes dangerous, and ultimately futile, as the narratives to be discussed here make abundantly clear. Conflict between PWAs (trying to keep themselves individually healthy) and bench scientists (trying to identify treatments effective on randomly selected groups) is likely to continue as long as no wholly efficacious treatments for HIV-related conditions emerge. But besides the troubling ethical concern about access to experimental therapies and the design of clinical trials, there is another important ethical concern: the effect of the search for a cure for AIDS on PWAs and on gay PWAs in particular. Thus far the search for an AIDS cure has not only proved an ambiguous benefit to PWAs, it has sometimes even brought cognizable harm. I do not wish say that both orthodox and alternative medicine have not brought relief and solace to many PWAs, for they undeniably have, but the relentless search for treatment and a cure does sometimes open PWAs to new vistas of suffering and hopelessness they would not otherwise know. Hope may also be an iatrogenic suffering.

Borrowing Time

On the very first page of his 1988 Borrowed Time Paul Monette says, "I take my drug from Tijuana twice a day."^[4] This unspecified drug came from Mexico because, no doubt, it had not been approved for use in the United States or was substantially cheaper there. Either way, this admission is an affront to medical and pharmaceutical practices in this country which force PWAs to rely on the sometimes illegal drugs of a developing nation in order to secure their health. The depiction of medicine in the rest of Monette's memoir of a lover and friends looking for a cure only deepens that challenge. Consciously and unconsciously, the memoir documents how the search for an AIDS cure opens PWAs and their lovers and advocates to unreasoning hope and subjects them to the depredations of institutional medicine and what homophobia abides there.

While Monette and his lover, Roger Horwitz, do encounter some caring and compassionate individuals in their search for treatment, Monette more typically represents the institutions and practitioners of medicine as consistently failing them across the range of their needs as gay men worried about, sick with, and dying with AIDS. Inasmuch as the memoir amounts to a virtual catalog of the damages of medicine, those few patches of text offered on behalf of the humanity and accomplishment of medicine are rare oases indeed. More often, Monette scores traditional medicine, especially the operations of its experimental arm. At the beginning of Roger's illness, for example, medical uncertainty about the nature and significance of AIDS permitted patients some hope that would eventually prove ill founded. While talk about the fatality of AIDS was in the air, its symptoms were so unclear that gay men did not understand what medical problems qualified for diagnosis as AIDS proper. Monette cannot understand, for example, how his friend Cesar Albini's swollen, unhealing leg is related to the rare pneumonia and cancer that were the conditions first gropingly identified as AIDS.^[5] Similarly, Roger's minor cough and a not-very-serious swelling in Paul's neck lead them worriedly to physicians, who told them that their symptoms did not match the criteria set forth for AIDS, that they did not even qualify for something called at the time pre-AIDS. Such epistemological uncertainty about the nature of the syndrome on the one hand functioned to make gay men worry unrelievedly about whether they had the fatal illness while on the other hand offered them false hope when practitioners could not identify their illnesses as AIDS-related. While it would be unfair to blame medicine for its uncertainty about a newly emerging viral syndrome, the effect of that uncertainty was to create informational and educational vacuums in the public at large and to permit diagnostic imprecision in the clinic as well as false hopes in its clients. Uncertainty about the nature of AIDS and the uncertain distinction between pre-AIDS and AIDS itself comes to a farcical collapse in Borrowed Time when one of Monette's friends dies with doctors all around insisting that while they did not know exactly what it was that killed him, it certainly was not AIDS.^[6] How many more, Monette wonders, died but never made the lists?^[7] In an even more ironic twist, one of the very physicians whose reports signaled the formal 1981 beginning of the U.S. epidemic wrongly told Monette his symptoms would probably prove to be nothing.^[8]

The HIV-related sickness and death of Cesar Albini and Roger Horwitz are shadowed with iatrogenic suffering. Roger undergoes many of

the predictable blood tests, X-rays, CAT scans, invasive and disabling bronchoscopies, and takes home the grocery bags of drugs that are the medical fate of PWAs, all of which inflict burdens of one kind or another on him; at one point both Roger and Paul are misdiagnosed with amoebiasis. Monette criticizes the depersonalization that occurs in hospital settings: the stripping away of personal identity, the reduction of the individual to a medical problem. Many of the health-care difficulties experienced by Monette and Roger are not, of course, limited to PWAs. Physicians elsewhere make mistakes, misdiagnose patients, and cannot promise to cure all human ills. Not only can physicians not treat all conditions, they often fail to approach individual patients in sympathetic ways. New interns do all appear improbably young and interchangeable, and they often relate to patients only through newly learned questions that crudely impose a biomedical framework on the unscientifically ordered lives of their patients; encounters between sick men and women who construct stories of their sickness in relation to their personal biographies often clash in narrative entanglements with physicians who try to see diseases and disorders apart from those personal histories. Many people cannot afford the luxuries of private medical care and must seek recourse in the limited health-care services available at publicly supported hospitals.

But AIDS produces its own unique circumstances in this account too. After Roger is hospitalized, he undergoes a bronchoscopy, in which a tube is inserted through the throat into the lungs in order to retrieve a tissue sample for study. The experience is exceptionally painful but necessary in order to confirm certain diagnoses; the discomfort of this sadistic parody of fellatio^[9] leaves Roger mute and racked with pain. Shortly after his first hospitalization, a physician appears in Roger's room and announces that tests do confirm Pneumocystis pneumonia, but he says no more. As Monette says, "The intern had never once said the word."^[10]Pneumocystis served as a cultural code for AIDS, a code that permitted discussion of AIDS without the need for direct use of the term, a code that reflected the need even in medicine to discuss AIDS in an indirect fashion because of its unsavory social connections with gay sex, drug use, and immorality. Uncertainty about the nature of AIDS had previously permitted Roger and Paul to hope Roger was not affected, his symptoms notwithstanding. The intern's silence about AIDS might be motivated by sympathy, a wish to spare Roger the burden of a diagnosis that was as much a scandal as a threat to his life. But from Roger and Monette's perspective, the physician's diagnostic evasion was merely

paralepsis, confirming AIDS while pretending not to mention it. Such a reined-in diagnosis offered no important benefit to them. The doctor's reluctance to use the word AIDS recapitulated social inattention to AIDS and foretold a doomed outcome. The diagnosis in any case plunged Roger and Paul into the larger uncertainty of coping with an entirely untreatable condition.

The diagnosis does launch Paul and Roger on a crusade for a cure. They are favored by their economic standing and intellectual acumen, and they know as much. They know other gay men with AIDS who do not have access to any experimental drug protocols, including one man who waited hours to see a doctor in a public hospital all the while knowing that the doctors had no clue about how to help him.^[11] But the lovers' privileges do not come without a price, especially as all these experimental efforts not only do not save Roger's life but also endanger him and tether him inextricably to physicians and hospitals. Throughout the memoir Monette chronicles the reticulated network of the AIDS underground, an informal cluster of friends and activists who keep watch for the newest drugs, especially antivirals, those that would attack the infection itself. As Monette put it: "The struggle for the drug gave us a great surge of purpose that colored everything. Any news about any drug could cut through my blackest despair."^[12] Attention to this grapevine earned Roger placement in two drug trials. The first, for suramin, started in a Zurichlike clinic, all quiet and fastidiously clean. For the promise of the drug trial and the presence of a gay doctor in this sheltering clinic, Monette was grateful, but the gratitude was tempered by the secrecy he and Roger felt necessary about the diagnosis. Roger once even moved to another room in order to prevent contact with a patient who knew him. While the trial went forward in these favored circumstances, however, Monette worried all the while that if this drug failed, there would be no magic bullet.^[13]

The drug did fail both Roger and others around the country: "As for the suramin—water under the bridge which seemed more lethal with every report that came in. . . . I felt ridiculous and ashamed. I who had pushed suramin all summer as practically a miracle drug." But Monette decides his own connivance in getting Roger into this trial is forgivable since he was gullible while "others knew exactly what they were doing" in offering so toxic a drug.^[14] Monette censures the way in which other test sites continued their suramin studies even after it was clear that the drug was too toxic: "There was even one doctor who kept his patients on suramin through the winter, even when we knew how lethal the side

effects were, and even as the patients died off one by one."^[15] In the end, even as the clinical drug trial offered the only hope then available in the armamentarium of orthodox medicine, such experimentation simultaneously underscored the vulnerability of PWAs and their lovers and advocates. Most important, it didn't help; it almost killed Roger.

But on the grapevine there was already word of another drug, something known as AL-721. A personal connection at UCLA—favoritism, really—got Roger into a study of that new drug, which proved to be AZT, and Monette turns to this trial with hope, undaunted by the first near-disaster: "The thrill of the undercover operation kept us going, and this at a time when AZT had the status of a Holy Grail in the AIDS underground."^[16] Roger was apparently the first person west of the Mississippi to be treated with the drug; Monette calls him the AZT poster child. And like suramin before it, the drug held out hope where elsewhere there was none. For a time the drug appears to work; at least Roger's clinical condition improves. Soon an AZT culture starts to flourish everywhere, with the beepers of friends and strangers going off at four-hour intervals to remind people to take their medication. But the promise of the drug is not fulfilled, and Roger succumbs to various complaints: shingles, anxiety attacks, aphasia, dementia, and the increasing blindness that precedes his decline to death. But even that blindness was fought with an experimental surgery.^[17]

Monette and Horwitz's search for treatments and a cure, problematic in any case by reason of the mysterious nature of AIDS, was complicated by their sexual identities too. Dated from the appearance of those Morbidity and Mortality Weekly Reports pointing out the unusual occurrence of Pneumocystis pneumonia and Kaposi's sarcoma in 1981, the AIDS epidemic formally began less than eight years after the contested decision by the American Psychiatric Association (APA) to remove homosexuality per se from its categories of mental disorders. Many gay men who came of age in the fifties, sixties, and the early seventies would not even have viewed that decision as their "liberation" (though some did) so much as a confirmation that sexual reorientation therapy was their own Tuskegee syphilis experiment, as evidence that medicine did not value them in their lives and loves and understood their worth only in relation to the outcome of medical experiments carried out on them, sometimes involuntarily. The search for a medical cure for homosexuality had led to some grotesque efforts in chemical and electrical aversive therapy, drug treatment, testicular transplants, and even brain surgery.^[18] And the practice of conversion therapy has not disappeared even today.^[19]

It is not surprising that when medical authorities announced the emergence of a new, pernicious syndrome attacking gay men, many would have received the news suspiciously, even skeptically. Was this new syndrome the next phase of medical homophobia? In the history of APA classification homosexuality was first claimed to be a sociopathic personality disorder, then a sexual disorder, then an ego-dystonia, and finally—as the vestigial form of this pathological classification—sexual-orientation distress. Was AIDS a continuation of the perceived biomedical agenda to link homoeroticism with pathology? And even if gay people did not have a specific skepticism about AIDS per se as a continuation of a pathologizing homophobia, still after sometimes hard rites of passage to adulthood they would nevertheless have difficulties returning to the care of social institutions knowing as they did that schools, churches, government, and even doctors often failed to acknowledge, protect, and nurture them.

While Monette does not report a physician or nurse refusing to treat a PWA because he or she was gay, we nonetheless recognize in Borrowed Time an expectation of homophobia from medical institutions and health-care workers. Monette mentions that in the past a gay man with any disease even faintly venereal would seek out a physician who was also "on the bus." In other words, he would seek out a gay physician in order to avoid embarrassment or in hope of some understanding, even what Monette punningly calls "fellow feeling."^[20] Such an observation suggests the way in which gay men often do not believe that heterosexual physicians understand them or are prepared to tolerate the diseases that attend their sexual lives. Though medical professions may no longer profess the pathology of homoeroticism, many gay men still do not believe that they will be accepted in the kind of unconditional doctor-patient relationship afforded straight people. It was, after all, only in mid-1993—almost twenty-five years after the beginnings of gay liberation at Stonewall and twelve years after the announcement of the existence of AIDS—that the American Medical Association (AMA) voted to declare discrimination on the basis of sexual orientation unacceptable within that professional organization.^[21] Even then, the policy statement met opposition. The entrenched homophobia of medicine is underlined in Monette's narrative by an anecdote about a physician who rolled his eyes in a way to make plain that Roger's father must have done something very wrong to have had not one but two gay sons, and with two different wives no less.^[22] In such an adversarial context the question

"Are you a homosexual?"—even if asked by a conscientious doctor looking for a means of HIV infection—triggers every protective instinct in a gay man against a homophobic environment and can have the effect of alarming gay PWAs rather than convincing them that the question is posed in their best medical interest.

An openly gay doctor does appear at the UCLA medical center where Roger is being treated. Peter Wolf is one of the few health-care workers in this account who offers the two refuge from the fear of medical homophobia. In a number of instances the best care given to Roger comes from persons capable of imagining themselves or their relatives as PWAs, a perspective easy enough for someone gay or friendly with gay men. Of Peter Wolf Monette relates: "Explaining that he had been treating AIDS patients since his first day as a doctor, he spoke simply and feelingly of looking down at a stricken man in bed and thinking: 'This is me.'"^[23] Later on, a nurse with a gay son exhibited a committed interest in the well-being of her PWAs "so maybe if someone ever has to take care of him, they'll treat him like a son."^[24] There is also a kindly gay phlebotomist singled out by Monette for praise. By contrast, when Monette poured out his worries about Roger's diagnosis to his own straight physician and asked what to do, that doctor "shrugged his shoulders with a cavalier unconcern I can only attribute to his certainty that he was safe himself. I've seen that straight man's shrug a hundred times. 'Burn the sheets,'" he replied . . . and then added, "You live alone, you die alone."^[25] Monette does not say that no straight doctor offered support and consideration—in this regard Monette has nothing but highest praise for Dennis Cope ("And not once in twenty months did he not have time"^[26] )—but by and large the institutions and practitioners of medicine in his account distanced themselves from PWAs. Medicine stands apart from PWAs in the way it functionally forces the burdens of learning about AIDS diagnoses and treatments onto PWAs themselves. It stands apart in the labored efforts of dentists to appear—against all evidence—comfortable in the infection-control procedures of mask, gloves, and warily executed contact. It stands apart in the promotion of therapeutic strategies that permit hope of the most dubious kind. In the expectation that increased visibility of gay health-care workers would lift some of this burden, the very first item of the "Founding Statement of People with AIDS/ARC" recommends that health professionals "who are gay come out, especially to their patients who have AIDS."^[27] Their presence is expected to mitigate—as it does in fact in Monette's mem-

oir—the homophobic context of medicine by diminishing the way in which the conventions of the closet compromise the care of gay people with AIDS.

Eventually, since this is a memoir and not a biography in progress, Roger's decline accelerates, with fevers and sweats, coughing, the collapse of injectable veins, a catheter implant for drug injection, the infection of the catheter, disorientation, and increasing need for nursing care and AIDS buddies. Nevertheless, Monette continued to believe in the miracle of AZT. It fell to Dr. Cope, Roger's doctor, to point out to Monette the significance of Roger's fourth bout with Pneumocystis pneumonia: "It wouldn't be the worst thing if this were the one that took him."^[28] In his last conscious moments, Roger "speaks" to Paul one last time by fluttering his eyelids. Knowing that it is finally over, Paul goes home. Awakened later by the phone, he and Roger's mother listen to a nurse's voice speak through the electric gauze of the answering machine: Roger has died. The days of his experiments are over even as Paul's had scarcely begun.

The representations of medicine in Borrowed Time are, to be sure, colored by personal grief and anger, and medicine may be wrongly blamed for the evils that belong to human frailty more than personal iniquity, but these characterizations are instructive nevertheless about the meaning of the quest for a cure. Even when fully committed and engaged, biomedical institutions on the cutting edge of research prove themselves helpless before AIDS. Even though gay men are occasionally present as health-care workers, their tokenism does not wholly offset the homophobia gay men fear from the medical establishment. Despite all the efforts expended on Roger's behalf and all the lessons that might have been learned about his own illness, Monette does not expect that he himself will fare any better than Roger in finding help. Thus the opening line of the memoir ("I do not know if I will live to finish this") may be understood not only as a reflection on Monette's own mortality but also as a reflection on the state of medicine. Despite the structured efforts on the part of biomedical scientists to find a cure, there may never be a "magic bullet," even though the very pursuit of that objective fosters expectations of deliverance. Monette's memoir shows how medical promise can prove a receding, beckoning horizon that stays slightly beyond the hope it engenders in PWAs.

This treacherous kind of hope is somewhat tempered by an ambiguous effect of the search for a cure: the emergence of an AIDS under-

ground. As Monette says of the band of gay men and PWAs looking for a cure:

This network has the feel of an underground railway. It could be argued that we're out there mainly for ourselves, of course, and the ones we cannot live without. But on the way we have also become traders and explorers, passing the word till hope is kindled in places so dark you can't see your hand in front of your eyes. If the government was going to act as if we didn't exist, if the medical establishment was prone to gridlock over funds, if the drug companies were waiting till the curve got high enough for profit, then we would find our own way.^[29]

The AIDS underground functioned in part as a social form binding gay men together in ways that would not otherwise be possible in the shadow of homophobic medicine (and that would indeed not be required absent the epidemic). The search for a cure made some gay men more expert about AIDS early in the epidemic than most doctors, even in the most prestigious medical schools in the nation. Participation in a drug trial represented a willfulness to live that rang particularly strong in a culture whose medicine had declared "homosexuals" mentally ill and whose morality viewed homosexuality as ending in lonely, self-inflicted death. Anger at government and society at large and the search for an AIDS treatment at least had the effect of uniting PWAs in ways that served their own purposes. Monette's novel Afterlife, which followed Borrowed Time, continues this theme in showing how gay men and gay PWAs keep vigil over one another in homophobic society.^[30]

In an implacable quest for an AIDS treatment, however, clinical drug trials and unorthodox treatments alike become overlaid with expectations that they could not possibly hope to meet. More important, their purposes may not be the purposes of individual PWAs. For example, even while suramin and AZT failed Roger, these failures are biomedical "successes" in the sense that they at least identify the limitations of those drugs as treatments. Even though they prove failures in saving individual lives, these kinds of "successes" can be as important to biomedical knowledge as clinical successes. Individuals may look to the advances of biomedical research for their individual salvation, but biomedical research need not save any given individual in order to advance itself. The AZT trial appears to have extended Roger's life for a time, and the search for a cure generated a camaraderie among the HIV infected that would not otherwise have been possible. There are reasons enough to acknowledge the worth of these advantages, but in the context of a

health-care system that can be inimical to all patients and especially gay PWAs, even these advantages are not without their costs. How many times, after all, is a PWA supposed to want to survive the emergency hospitalizations, the intubations for mechanical ventilation, and the medications and sedation that are the treatment of Pneumocystis pneumonia? While biomedicine may benefit from putting PWAs through all these seemingly endless treatments in the sense that the pool of knowledge is thereby increased, still it is important not to mistake the needs of experimental research and the education of physicians for the needs of each individual PWA.

Medicine from the Garden Shed

David Wojnarowicz's "Living Close to the Knives" describes how his friend Peter Hujar, close to death and sicker all the time, explored various AIDS treatments. This memoir differs from Monette's in that its subject does not seek a cure in the halls of prestigious health centers. On the contrary, Peter gropes his way through unorthodox treatments. He had seen one researcher, for example, who had been working with "nontoxic antiviral drugs he'd developed." The researcher's investigations had elicited some sort of trouble with the federal government, but legal action failed to impugn the integrity or character of this particular researcher. In fact, action by a government discredited by its failure to appreciate the nature and magnitude of the epidemic actually enhanced his reputation: "The fact that the government entered the scene was one of the things that convinced Peter that the doctor might be a genius."^[31] Part of the attraction here was the bold idea that the doctor had developed: injecting his patients with a "vaccine" made from human excrement.^[32] Not even the fecal origin of this vaccine detracted from the doctor's credibility with his clients: "I figured that because shit was one of the most dangerous corporeal substances in terms of passing disease . . . maybe this guy figured out something in the properties of shit to develop a vaccine. After all, the bite of a rattlesnake is treated with a vaccine made of venom."^[33] The doctor did fall from grace, however, when it was learned that only one person's excrement was the source of everyone's vaccine, that he covered up adverse reactions, and that he lied about how well others were doing ("fine, fine") when they were in fact sometimes dead and buried.

Wojnarowicz went next to a doctor on Long Island who was administering typhoid shots to PWAs on a theory that the injection somehow bolstered the immune system. Peter's raw emotions and disorientation beset the trip out to the doctor, but the encounter with the doctor proves more disconcerting still. The waiting room is full of familiar faces from the AIDS underground, fellow travelers recognizing one another from other waiting rooms, with a grapevine all their own. As in Monette's account, these cure seekers have assumed responsibility for their own treatment. One so-called "Dorian Gray," for example, both diagnoses and prescribes for himself, saying he won't need AL-721 because he only has AIDS-Related Complex, not AIDS.^[34] In an ironic reversal of orthodox researchers' worries that their experiments will be disrupted by patients' taking unapproved drugs, other PWAs in the waiting room advise Peter to conceal his own use of AZT because this researcher wants to keep his unproven therapy uncontaminated by the confounding use of one of the drugs then formally licensed for the treatment of HIV infection!^[35]

The Long Island researcher opens up whole new possibilities of hope when he finally meets with Peter.^[36] Ostensibly raising the question in the name of diagnostic certitude, the doctor asks Peter how he knows he has AIDS, adding, "After all, you may not have it." This question calls into doubt Peter's entire medical history and recasts his future. His "AIDS" might conceivably be cured by proving it never existed in the first place. The actual injection that Peter receives that day is an anticlimax to this more engaging possibility of deliverance. The narrator and another friend, however, are skeptical. Under their questioning, the "doctor" turns out to be "a research scientist with degrees in immunology" who offers them only a vague account of his theory connecting typhus injections with the thymus gland. They come away with their confidence in his medical knowledge significantly undercut. Neither the injection nor the prospect of correcting a misdiagnosis, however, proves of benefit; Peter dies later in the confines of an orthodox hospital, in keeping with his original orthodox diagnosis and prognosis.

Alternative medical treatment proves attractive for a number of reasons in this account.^[37] Not only has Peter exhausted the routines and treatments available to him from orthodox medicine, but Wojnarowicz feels that orthodox medicine also stands as a figure for and is of a piece with the larger and morally corrupt society it serves. Wojnarowicz accuses the government of inaction and willful malfeasance toward PWAs. He notes, for example, how medicine's cultural distance from the sick

and its general antipathy for gay men have forced PWAs to become not only their own researchers but also their own research subjects:

The government is not only witholding money, but drugs and information. People with AIDS across the country are turning themselves into human test tubes. Some of them are compiling so much information that they can call government agencies and pass themselves off as research scientists and suddenly have access to all the information that's been withheld and then they turn their tenement kitchens into laboratories, mixing up chemicals and passing them out freely to friends and strangers to help prolong lives. People are subjecting themselves to odd and sometimes dangerous alternative therapies—injections of viruses and consumption of certain chemicals used for gardening—all in order to live.^[38]

While Wojnarowicz applauds the heroism in the efforts of PWAs to take matters into their own hands, he clearly does not find the cookery of alternative medicine any great consolation, given the brutal risks it entails and the larger social failing it represents. Wojnarowicz sees the therapeutic need created by AIDS as ultimately the responsibility of government and federal health agencies. Their failure to respond has turned PWAs by default into hobby researchers and kitchen chemists because they have no alternative.

Wojnarowicz connects Peter's death—and all deaths with AIDS—to the larger social hatred of gay men, to a homophobia and violence so pervasive that it both produces and sustains the ills of the epidemic. Given the willingness of people to blame PWAs for their illness and even a readiness to round them up in camps or to tattoo them, Wojnarowicz explains: "What's going on here but public and social murder on a daily basis and it's happening in our midst and not very many people seem to say or do anything about it."^[39] The matter of rage at society is intimately connected with the search for an AIDS cure. In "X Rays from Hell," a tale that begins in a late afternoon conversation about the worth of living when, AZT notwithstanding, a friend's T-cells have plummeted to thirty, Wojnarowicz expresses this anger: "My rage is really about the fact that WHEN I WAS TOLD THAT I'D CONTRACTED THIS VIRUS IT DIDN'T TAKE ME LONG TO REALIZE THAT I'D CONTRACTED A DISEASED SOCIETY AS WELL."^[40] He rejects the punishment theory of disease: that people die with AIDS because they have transgressed some moral norm or because they have internalized society's hatred of homosexuals.^[41] He says, "I simply can't accept mystical answers or excuses for why so many people are dying from this disease—really it's on the shoulders of a bunch of bigoted creeps who at this point in time

are in the position[s] of power that determine where and when and for whom government funds are spent for research and medical care."^[42] AIDS here stands not only for the sickness set in motion by an HIV infection but as an indictment of pervasive and corrupt moral attitudes. A "cure" for AIDS therefore requires a much more broadly construed rescue than experimental pharmacology can by itself offer. Wojnarowicz observes:

Outside my windows there are thousands of people without homes who are trying to deal with having AIDS. If I think my life at times has a nightmarish quality about it because of the society in which I live and that society's almost total inability to deal with this disease with anything other than a conservative agenda, think for a moment what it would be like to be facing winter winds and shit menus at the limited shelters, and rampant TB, and the rapes, muggings, stabbings in those shelters, and the overwhelmed clinics and sometimes indifferent clinic doctors, and the fact that drug trials are not open to people of color or the poor unless they have a private physician who can monitor the experimental drugs they would need to take, and they don't have those kinds of doctors in clinics because doctors in clinics are constantly rotated and intravenous drug users have to be clean of drugs for seven years before they'll be considered for experimental drug trials, and yet there are nine-month waiting periods just to get assigned to a treatment program. So picture yourself with a couple of the three hundred and fifty opportunistic infections and unable to respond physiologically to the few drugs released by the foot-dragging deal-making FDA and having to maintain a junk habit; or even having to try and kick that habit without any clinical help while keeping yourself alive seven years to get a drug that you need immediately—thank you Ed Koch; thank you Stephen Joseph; thank you Frank Young; thank you AMA.^[43]

Given Wojnarowicz's concern for the socially and medically disenfranchised, we are not surprised that he expresses so much interest in unorthodox medicine, even measuring its worth by the extent to which medical and governmental health agencies oppose it. At least unorthodox medicine will not be automatically tainted by complicity with these larger social failings.

As in other writing by gay men about the epidemic, Wojnarowicz's solution to the epidemic is intimately connected with greater access to drugs, government initiative in the development of treatment, and larger social reforms that work primarily to end homophobia but also to help the homeless, the poor, and the junkie PWAs. From this perspective a cure for AIDS cannot be limited to a pharmaceutical magic bullet that has as its only effect the control of HIV, for the oppressions of AIDS are more than the sum of their pathogenic parts. Even more than Monette, Wojnarowicz expresses a seething anger at the profound indifference of

American society to the lives of gay men and other disenfranchised minorities.

Orthodox medicine faces an important challenge in recognizing and responding to the meanings of AIDS in the lives of those whose economic and social situations do not permit them the luxury of monitoring the national AIDS grapevine for new drugs or checking themselves into comfortable hospitals for extended periods of experimental therapy. Even if medicine is on the road to the discovery of a cure for AIDS, the PWAs who inhabit Wojnarowicz's pages do not stand to benefit from it. Orthodox medicine not only fails to deliver what health-care services are available to all, it also fails to enroll PWAs in experimental anti-HIV drug trials. Drug-users and women, for example, generally face considerable obstacles in enrolling in drug trials.^[44] Orthodox drug trials thereby become one of the problems facing socially disadvantaged PWAs of whatever sexual orientation. The "gold standard" of long-term, multisite, placebo-controlled testing, all carried out with the profit motive in mind, can prove no friend to the homeless PWA. By contrast, unorthodox treatments seem a kind of pharmaceutical lightning, which if it hits, may do so powerfully and memorably, but even Wojnarowicz's sympathetic account depicts the humiliating limits of alternative methods. Injections of shit into the bodies of PWAs serve as their own reductio ad absurdum.

Compassionate Access

Set in Paris, Hervé Guibert's To the Friend Who Did Not Save My Life is a thinly disguised account of Michel Foucault's death with AIDS and the author's own struggles with his HIV infection.^[45] Professor of French literature Emily Apter rightly calls the work a mixed narrative form, neither fiction nor pure autobiography.^[46] Foucault's longtime companion labeled the work a vicious fantasy, though it is clearly biographical in parts.^[47] Sorting out what is and is not fictive in this account is not as important here as considering the encounters with medicine that dominate To the Friend . The portrait of medicine that emerges is anything but flattering. In fact, the narrative is a relentless account of the missteps, limitations, and duplicity of medicine. The account opens with a declaration that despite three months of despair, the narrator will prove one

of the first survivors of AIDS. The author explains how his hopes are buoyed and sustained not by AZT or an underground treatment but by an "AIDS vaccine" coming from orthodox origins in American vaccine research. Yet in spite of the hope this vaccine inspires, To The Friend is largely an account of the way in which medicine fails people with AIDS.

Bill, an American manager of a large pharmaceutical lab that manufactures vaccines, is the first to tell the narrator (who stands for Guibert) in 1981 of a disease in the United States that is killing gay men. When the narrator passes this information along, his famous intellectual neighbor and friend, Muzil (who stands for Foucault), responds with incredulous laughter: "A cancer that would hit only homosexuals, no, that's too good to be true, I could just die laughing."^[48] Ironically, Muzil will be among the first in France to die with the disease and among the most famous worldwide. His death in this narrative is made more ironic by his one-time encounter with a physician who hoped to establish dying centers where people could go and die quickly and painlessly, avoiding the long, revolting death agonies of hospices. Muzil had laughed this suggestion off too, though a version of this disappearing way of dying would prove attractive to him in his final days:

That nursing home of his, it shouldn't be a place where people go to die. Everything there should be luxurious, with fancy paintings and soothing music, but it would all be just camouflage for the real mystery, because there'd be a little door hidden away in a corner of the clinic, perhaps behind one of those dreamily exotic pictures, and to the torpid melody of a hypodermic nirvana, you'd secretly slip behind the painting, and presto, you'd vanish, quite dead in the eyes of the world, since no one would see you reappear on the other side of the wall, in the alley, with no baggage, no name, no nothing, forced to invent a new identity for yourself.^[49]

This portrait of a vanishing, of a pretend death—taking the form, as the gravity of his illness became more apparent, of a wish to disappear in world travel—proves an ironic foil to Muzil's own all-too-corporeal death in the very hospital whose care of prostitutes and the insane Foucault had studied. There is precious little here to humanize Muzil's illness and death, and toward the end even such innocent trifles as pudding and copies of his new books were banished from his hospital room. The laughter that was Muzil's reaction to the first report of AIDS is transformed into a hacking cough that ends finally in his inability to speak. Before he died he knew full well how completely the body loses its identity once it is delivered into medical hands, "becoming just a

package of helpless flesh, trundled around here and there, hardly even a number on a slip of paper, a name put through the administrative mill, drained of all individuality and dignity."^[50]

There is some question in Foucault's own case of whether he knew or admitted to himself that he had been diagnosed with AIDS. Muzil's own expectations regarding diagnostic disclosure would permit him and others to avoid any unwanted information. In this regard Guibert reports Muzil as saying: "The doctor doesn't tell the patient the truth straight out, but he gives him the means and the opportunity, by talking in a roundabout way, to figure it out for himself, which also allows him to remain blessedly ignorant, if that's what he really wants."^[51] The narrator does confront Muzil with the diagnosis of AIDS: "Actually, you hope you have AIDS." But Muzil "shot me a black look, one that brooked no appeal."^[52] Even if Foucault knew that he had AIDS, there is still uncertainty about what he took it to mean. This uncertainty would at least have had the effect of staving off the doom associated by the media with the diagnosis in 1983 and 1984; there is even one point at which Muzil receives an astonishing declaration from a physician that he is in perfect health.^[53] Not even this distancing of himself from AIDS, though, saves Muzil, who eventually dies under the reductive gaze and authority of medicine, all his expressed hopes for a death unattended by medicine thwarted, his death shadowed not only by the irony of his own earlier dismissal of a disease that stalks gay men but also by intimations that he knowingly participated in sex that might have infected others.^[54]

The portrait of medicine that emerges in the course of the narrator's discovery of his own HIV infection paints medicine in castigating terms. Throughout this account there are all the predictable humiliations of patients, practically conventions of medicine, that are common in stories of sickness. Patients are kept waiting for unaccountable periods, they are left unattended during embarrassing and painful procedures and in unfriendly environments, and in one instance the narrator observes how his blood vials have been accidentally mixed up with those of another patient.^[55] For his first blood tests, moreover, the narrator visited a clinic in an otherwise deserted and shuttered hospital on the verge of complete closure, the perfect cinematic symbol for medical desolation. Elsewhere in the account, physicians are rebuked for improprieties. One doctor insisted on an HIV test the narrator did not want.^[56] Another put the narrator at risk of liver cancer through mismanagement of hepatitis.^[57] Another gossiped indiscreetly about his patients.^[58] A homeopath diagnosed the narrator's throat abscess as "spasmophilia," a semivoluntary

condition caused by a lack of calcium, something requiring the "treatment" of mineral water and lemon.^[59] That same doctor treated female patients by "shutting them up nude inside metal chests after affixing needles all over their bodies, needles filled with concentrates made from herbs, tomatoes, bauxite, pineapples, cinnamon, patchouli, turnips, clay, and carrots . . ."^[60] Yet another doctor diagnosed Guibert as suffering from "dysmorphophobia," a hatred of all forms of deformity.^[61] A psychiatrist challenges a patient to admit that his AIDS is the culmination of his own longing for death.^[62] So harsh and humiliating are Guibert's encounters with medicine here and in his subsequent book that Emily Apter has called his work a "tragicomic version of La Ronde, in which doctors, visited in rapid succession and submitted to without a word, are substituted for the tricks of old."^[63]

While the narrator's emotions are infused with hope for treatment of his HIV infection, his search for a vaccine parallels the kind of willful submission to mortification which is typical of masochism. The term vaccine is used by Guibert, as it has been used by Jonas Salk and others, to describe a treatment used on persons already infected with HIV which introduces some altered and nonpathogenic form of HIV in order to evoke an immune response capable of acting against pathogenic HIV. Such a treatment could then be administered prophylactically to others not yet infected. Bill, an American pharmaceutical executive, describes the possibility of a trial of such a vaccine in France and it becomes the narrator's sustaining hope. At the very same time Dr. Chandi invites the narrator to participate in a double-blind, placebo-controlled drug trial. This kind of trial meets the scientific community's requirement of ruling out the psychologically powerful placebo effect (in which the mere expectation of benefit from a drug produces the benefit sought). The pretense of placebos is found repugnant by the narrator ("abominable, real torture for all the patients involved"^[64] ) and all the more so when he discovers that Dr. Chandi had lied to him. Dr. Chandi admitted that "he was already convinced at that time that the real medication was as useless as the dummy." It was only at the insistence of the pharmaceutical company that physicians continued to seek subjects for the study.^[65]

After his formal diagnosis of HIV and his refusal to participate in Dr. Chandi's drug study, the narrator's T-cell count starts to fall, and it appears that his only option is AZT. But even if the AZT is successful in sustaining his life, it will entail lifelong dependency and pose such side effects as nausea, vomiting, headache, skin rash, stomachache, muscular pain, insomnia, intense fatigue, diarrhea, dizziness, and taste disorders.

Against this background the narrator listens in awe to Bill's description of the vaccine. But the hope held out by the vaccine—months away at best—is still no reason for unalloyed optimism. As Guibert puts it: "Now I was entering a new phase, a limbo of hope and uncertainty, that was perhaps more terrible to live through than the one before."^[66] The personal treachery that follows justifies this description. Bill had promised to find a way to put the narrator (and companions Jules and Berthe) in the French trial, making sure they did not get placed in the placebo arm. Bill even went so far as to say that he would take the group to the United States and have the vaccine's creator vaccinate them if necessary.^[67] Bill proves, however, unfaithful and unreliable, and all his many promises do not lead to the vaccine. He does, however, find a way to put another friend in the trial. This outcome should not have been too surprising; the narrator himself notes how hard it had been to secure a ride home with Bill. The very scarcity of the vaccine trial slots opened the narrator and his companions to manipulation. The "science" of biomedical research proves itself again susceptible to human vice, in this case favoritism, a bias that may not work against the results necessary for science but that surely works against the interests of the narrator, who looks to biomedicine for his very survival. This favoritism even deranges what camaraderie is possible between gay men in the epidemic.

As in Monette's writing, Guibert's narrative pitches PWAs into a maelstrom of conflicting opinion even as they are forced to acquire what expertise is possible on AIDS. Guibert's narrator finds himself trapped, for example, between conflicting opinions on how much AZT to take, opinions from two equally credible physicians offering equally credible rationales for their dosage recommendations.^[68] The scene is a medical reenactment of the paradox of Buridan's ass: situated equally distant from two identical and equally attainable bales of hay, unable to identify any advantage in one over the other and therefore unable to choose between them, the ass starves to death. In such circumstances when all medication options appear equally limited, the prospect of an AIDS vaccine did offset psychologically the symptoms Guibert was enduring, fatigue and thrush among them. But the lure of a vaccine also and more importantly offered shelter from the responsibility for decisions about medication and offered the appearance of medicine more attentive to human needs and less wracked by the vagaries of conflicting scientific opinion.

There are instances in Guibert's narrative in which he pursues medical and emotional certainty another way. After examination by one partic-

ularly unorthodox doctor, the narrator says, "I'll kiss the hand of the person who'll tell me I'm doomed."^[69] Or again, he says, "I felt better the moment I learned I had AIDS."^[70] "If Bill were to file an appeal against my death sentence with his vaccine, he'd plunge me back into my former state of ignorance. [The diagnosis of] AIDS has enabled me to make a huge breakthrough in my life."^[71] Even as he anticipates the possibility of the vaccine, his commitment wanes: "But [Bill] was tired, and so was I, and it was as though neither of us believed anymore in the possibility of this vaccine and its power to bring my disease under control, as though, in the end, languidly, we no longer gave a damn, just didn't give a fucking damn."^[72] Or again, the narrator imagines Bill stealing the vaccine and crashing with it into the Atlantic.^[73] Whatever else these declarations might reveal about the psychology of the narrator, they show how the anticipation of death can offer a repose incompatible with the demonic stalking of the ever-new offerings of medicine. Guibert's narrative demonstrates how the pursuit of a cure requires that hope submit—as a condition of its very possibility—to endless medical scrutiny and experimentation, the brusqueness of physicians, and the venality of pharmaceutical executives.

Although the book opens on a note of optimism and commitment to being among the first survivors of AIDS, the narrator's final medical decision is to discontinue AZT. He ends his book saying: "I'm in deep shit. Just how deep do you want me to sink? Fuck you, Bill! My muscles have melted away. At last my arms and legs are once again as slender as they were when I was a child."^[74] The failures of medicine in this account are often personal ones, belonging to specific physicians, nurses, and Bill especially. But the narrator's indictment—"In Bill's eyes, I'm already dead"^[75] —encompasses the practitioners, the institutions, and the principles of medicine alike, if not for their outright abandonment of PWAs then at least for the way medicine can—in the guise of helping them—actually flog people with HIV toward their deaths.

The Cost of a Cure

Placebo means in Latin "I will please." Clinical drug and surgical trials attempt to isolate and extinguish any outcome that depends on the placebo effect, the improvement based on the expectation of benefit by

the experimental subject. But as the chronicles discussed above indicate, many more "pleasures" are extinguished in medicine besides those that confound experimentation. In their chronicles of the search for an AIDS treatment Monette, Wojnarowicz, and Guibert try to reintroduce important pleasures of PWAs back into medicine. Their search for an AIDS cure almost starts from the assumption that medicine is no antagonist to their pleasures, especially the pleasure of individual recovery from AIDS. Their own accounts, however, do not always support the uncritical fervency with which they pursue a cure for AIDS.

These authors do not confine their expectations of medicine to their own isolated hopes of healing. In their narratives the hope for an effective AIDS treatment is virtually indistinguishable from expectations about biomedical reform generally, and if their narratives are read as indictments they fault not only individual practitioners for harsh treatment but also the institutional values of medicine as prejudicial to gay men and those in need of experimental medicine. Nevertheless, Monette, Wojnarowicz, and Guibert all seem to believe that the march of biomedicine cannot but produce a cure, and this view is shared by others in AIDS activism as well. The operational assumption of Larry Kramer, for example, is that a cure for AIDS exists and that it is merely necessary to find it; in his analysis finding a cure means getting past the homophobia, bureaucratic intransigence, and political incompetence that keep medicine from doing its job.^[76] Cinema historian and AIDS activist Vito Russo also proclaimed that one day the AIDS crisis will be over.^[77] But perhaps unwittingly and contrary to their intentions Monette, Wojnarowicz, and Guibert make it clear that advances toward a cure are paid for in the currency of the suffering of people with AIDS. More often than not, a diagnosis of AIDS sets in motion a litany of examinations, tests, hospitalizations, and desperate fumblings in the realm of alternative medicine.

I do not wish to say that PWAs or any other group of persons suffering from illness ought not to pursue treatment and cures even if it falls to them to become experts about their conditions and prove the moral conscience for medicine. But I do wonder whether advocates of an unyielding belief in a cure for AIDS and a demand for that cure don't underappreciate the damaging effects of medical care and research. It is worth asking whether the search for a cure is modeling itself on a relentless consumerism, with the pursuit of experimental drugs taking its place alongside the Jaguar, the hillside home with pool, the imported goods, and the other amenities of upscale urban living as the symbols of

a fulfilling life. We may also ask in light of the narratives considered above to what extent the despair of PWAs can actually be an artifact of misplaced faith in the very capacities of biomedicine. Activist demands for an AIDS treatment come at a time when other social and legal forces are converging to secure ways of protecting patients from unwanted, ineffective, and sometimes brutalizing medical treatment. The federal Patient Self-Determination Act, for example, was prompted in part by the desire to protect patients from the damages of unrestrained medical treatment,^[78] and the death-delivering "Mercitron" of Jack Kevorkian and the thanatological recipes of Derek Humphrey's Final Exit have adherents of their own among the sick and dying.^[79]

In 1993 the Ninth International AIDS Conference in Berlin ended in pessimism about the prospect for early development of a prophylactic HIV vaccine, and its reports cast a long shadow over the efficacy of AZT, the most widely used drug for treatment of people with HIV-related disease. Conference presenters and reports associated this pessimism with the slow nature of science rather than with the nature of HIV.^[80] One may read this kind of pessimism in the same way that the 1993 National Research Council Report on AIDS^[81] can be read: as the predictable reeling in of a decade of outlandish discourse on the future of AIDS. After all, immunological prosperity was said to be around the corner more than once. One need only recall Secretary of Health and Human Services Margaret Heckler's overweening declaration in 1984 that a vaccine for what was then called HTLV-III was only two years away.^[82] Or one might read the somber, circumspect reports from the Berlin conference as evidence of waning social and medical commitment to the cause of discovering a cure. Either way, the conference functioned as a biomedical echo of these turn-of-the-decade narratives by Monette, Wojnarowicz, and Guibert about the results of a committed search for an AIDS treatment: all heroic efforts notwithstanding, there is no curative treatment for the pathogenesis of HIV infection, and none is on the horizon.

The enormity of the task of finding a cure for AIDS permits raising the question of moral responsibility in that task. Certainly people with severe illnesses want to discover a treatment that will restore them to health, and certainly society should invest in therapies and research. But it is hard to see that a morally defensible argument could maintain that PWAs and others with incurable conditions are individually duty-bound to discover a cure. It is also hard to see that any PWA has the duty to be the first person whose AIDS is cured. AIDS activism committed to

the demand for an immediate cure sets the threshold for "responsible" living with AIDS higher than would seem to be justified in terms of a person's moral duties. If, as Larry Kramer says, a cure for AIDS exists and merely needs to be discovered, it is easy to see PWAs and society at large as amiss if they do not pursue that cure with every effort that can be mustered. But such a judgment is unreasonable given the distance that appears to separate PWAs from a cure. If, moreover, one assumes that governmentally coordinated medicine may identify a cure for AIDS, one may wonder by extension whether similar efforts could not also identify cures for many other conditions. To the extent human disorders are the result of identifiable biological processes open to human intervention and control, in theory a cure would exist for all such human suffering. If so, there are more failures than successes in medicine, and to the extent these failures belong to human action and indecision the government not only has blood on its hands but buckets and buckets of it.

A cure for AIDS is important, yes, but it does not follow that each and every PWA must commit to the pursuit of that cure as if it were the only morally permissible objective for him or her. Since the task of finding a cure appears more and not less daunting with every passing international AIDS conference, it is well to keep in mind the dangers of overcommitment to a goal whose pursuit appears to be largely a matter of supererogation, of individual willingness to tolerate the limitations and disappointments of medicine. There is every reason to pursue treatment and a cure, but not a cure that imperils the other values important to PWAs. Recognition of the dangers posed by medicine to PWAs is not incompatible with views advocating stronger social investment in efforts to care for PWAs in all their needs. In extending the dominion of medicine over the cruelties of nature, the search for a cure affirms the worth of PWAs and the importance of human knowledge. But the pursuit of an AIDS cure, if it is swollen beyond reason, may prove as defeating as utter resignation to the inevitability of death with AIDS. In a review of Hervé Guibert's To the Friend Who Did Not Save My Life, gay novelist and essayist Andrew Holleran observed: "As the deaths increase in number, and the dead become more various, the recriminations are going to mount. In the broadest sense, everyone who survives did not save the lives of those who didn't."^[83] A cure for AIDS, envisioned as involving the rehabilitation of medical research, the eradication of homophobia, and the humanization of medical practice, is certainly attractive in its revolutionary ambitions. At the same time, though, Holleran's remark can be interpreted to suggest that uncritical insistence on a cure risks

expanding the breadth of human moral depravity to the point where mere survival amounts to complicity in others' deaths with AIDS. Surely the search for treatment and a cure should not have to incriminate every innocent of every human life and stoke every rage against dying when death can sometimes offer the sick more consolations than medicine.