For some time, the magic word on everyone's lips in "the HIV Positive community" has been "Cocktail." Many HIV+ people are being prescribed the popular medicinal combinations, even more are desperate to get them, and everyone is talking about them. Though the official terminology suggests something rather devil-may-care in a martini glass, with an olive and a paper umbrella, a Cocktail also signifies the joining of cock and tail, i.e. a sexual union. It can even replace sexual union: many of the men taking the Cocktail are rendered impotent.

These medicines are not drinks but capsules combining various conventional nucleoside analogue drugs (DNA chain terminators such as AZT and its surrogates) together with varieties of the newest official AIDS treatment, protease inhibitors. The Inhibitors (there is a growing list of them as Abbott, Merck and Roche patent their own varieties) ostensibly target a particular class of enzymes by interrupting the assembly of viral proteins. This process is supposed to prevent "the virus that causes AIDS" from infecting new cells. The problem is that when tested in humans, the Inhibitors had no beneficial effects. But the manufacturers were undeterred. Thus was born the Cocktail - new, useless, drugs combined with old toxic ones.

Some people have been unable to endure the Cocktails or have succumbed to heart attacks after taking them. Others have developed severe gastro-intestinal problems, diarrhea, vomiting, diabetes, wasting limbs or other unpleasant physical oddities with names like "crix belly" and "buffalo humps." Nevertheless, TV and the rest of the mass media have concentrated on a flurry of accounts of spectacular, almost immediate recoveries. There are stories and compelling video evidence of KS lesions going into remission, pneumonias quickly clearing up, and people rising from their death beds and returning to their tennis games. Recovering the ability to play tennis has been mentioned, for some reason, by several enthusiastic reporters. Perhaps they are thinking of Arthur Ashe, the most prominent heterosexual said to have died of AIDS (as long as Magic Johnson remains reluctant to take his place).

Among the skeptics is the longtime student of protease Dr. David Rasnick. Rasnick doubts that protease inhibitors can do HIV+ people any good. As the Inhibitors must be taken for life, Rasnick suggests that over the long term, they will inhibit essential intestinal enzymes, preventing the absorption of nutriment from food. (Inhibitors fed to animals apparently cause their guts to shrivel.) "No drug on its own has worked in AIDS," he says, "so they're hoping that by throwing it all together in one big ball, something or the other will have an effect."

What, then, is happening here? Is it possible that protease inhibitors may be toxic over the long haul, but initially beneficial to some seriously ill people? Perhaps. But it seems to have been largely forgotten that phenomena similar to the current positive accounts about protease inhibitors accompanied the introduction of Wellcome's AZT, its surrogates from rival manufacturers, and Sandoz/GeneLabs' less widely distributed GLQ223 ("Compound Q").

As each of these drugs became the treatment of choice for a wide range of HIV+ people, its mass prescription was heralded with a flurry of claims and corresponding accounts of spectacular benefits. These phenomena diminished somewhat as large numbers of patients found they could not "tolerate" the drugs, as side-effects became more widely known, as independent tests failed to confirm, or contradicted, initial claims, and as patients failed to recover their health or, after an initial rally, died. Even so, the assertions and expectations surrounding each of the drugs, have not disappeared, but rather been subsumed by claims for new combinations of products.

(The much-televised baboon bone cure offered a variation on a theme. Remember the baboon bone cure? Everyone wanted it after Jeff Getty, the handsome young man on the evening news, revived so quickly, refreshed in body and spirit. From coast to coast, gay men demanded that baboon bones be made widely available. Angry activists clamored for monkey-marrow. They insisted on it as their basic civil right! And then - the treatment failed; even the experimenters admitted it: the baboon cells were completely rejected. The patient thrived anyway and is still alive. The treatment was discarded. No money in baboon bones.)

Just because a drug is discredited does not mean it is no longer prescribed. It is merely combined with other, hopefully more effective, drugs. Product combination ensures that each drug company retains its share of the market.

Another characteristic of the Cocktail has been the stringent accompanying instructions regarding self-administration. Patients are told that it is absolutely essential that they take their cocktails at regular intervals during the day ("the cocktail hour"), and never miss a dose. Should even one dose be skipped, "the virus," which is as clever as it is deadly, will seize its opportunity, and all previous doses will be rendered ineffective. (In California, the fetish of the regular dose is so strong that San Franciscos's Director of Public Health, Dr. Sandra Hernandez, has proposed the practice of "D.O.T." - directly observed therapy: enforced, closely monitored medication.)

Like the host and the communion wine, the Cocktail must be consumed regularly; the regularity is no less important than the consumption as an act of faith and obedience guaranteeing salvation. For the person diagnosed as HIV+, the Cocktail's scientific combination of host and wine replaces holy communion with sacred consumption.

The meticulous dosing schedule is not a new phenomenon. In the early days of AZT, the little blue and white capsules bearing the silhouette of a unicorn came in a Micronta Drug Timer, a plastic box with a loud alarm that sounded like a truck backing up (Dr. Robert Gallo had likened getting HIV to "being hit by a truck"). This device went off every four hours, day and night, and recipients of the drug were warned that it was essential not to miss a dose. Thus, AZT users were never allowed to get a good night's sleep. As many men simply turned off the timer, or ignored it, or threw the drugs away, the rules were later changed. This, it seems, was forgotten, severe regimens were re-introduced, and once again had to be modified.

AZT monotherapy was virginal; traditionally, the unicorn is attracted by chastity. But in combination, its significance changes with the terminology; it becomes more eroticized, more appealing. Even so, the relentless schedule of the Cocktail (more pills to take than ever before) still encountered the same strong resistance as the earlier AZT monotherapy. In a consumer society, people are eager to find salvation in a pill. (Thomas Szasz said that many people would rather take a medicine that kills than no medicine at all.) But it seems we want a single pill, one that doesn't keep us up at night or consume our life.

Consumers can be demanding, and manufacturers are rushing to meet those demands. The new Cocktails are New! Improved! Easier to Take! And once one is taking them, one must never stop, on pain of death. The Cocktail is the perfect product; as Oscar Wilde said of the cigarette, it leaves one totally dissatisfied.

The Cocktail is the elixir, the Grail, of the Positive Lifestyle. All medicines have a sacramental component and drug consumption is almost always ritualistic. Any medicine endowed with the magical rejuvenating properties claimed for the Cocktail will engender a powerful placebo effect. Only the Inhibitors and Terminators embedded in the Grail (i.e. its substance, its materiality) undermine its promise of salvation.

In his seminal 1984 paper, "The Group-Fantasy Origins of AIDS," Dr. Casper Schmidt drew attention to a number of outbreaks of hysterical or iatrogenic illness that were initially, and incorrectly, diagnosed as infectious. But illness is not the only phenomenon to be affected by mass trance and group-fantasy. Recovery is also susceptible to the same shared mental factors. Attitudes to sickness and disability are easily affected by the unconscious wishes, beliefs and fantasies of patients, physicians, care-givers and social groups.

During the 1970's and 1980's, a breakthrough in communicating with autistic and severely retarded people was widely heralded. Application of a simple new technique known as Facilitated Communication resulted in people who had never communicated before suddenly being able to convey complex, sophisticated thoughts, often in well written sentences and paragraphs. The Facilitated Communication technique consists of assisting mentally (and often physically) impaired children and adolescents by holding and supporting a wrist or forearm while the child's fingers indicate letters on a keyboard or printed chart.

Once these previously unresponsive youngsters were "facilitated," many expressed their frustration at their plight and their love for their parents and caregivers. "FC" was promoted as a revolutionary technique demonstrating that whole groups of people previously thought to have severe learning difficulties were actually suffering only from neuromotor impairment. Acceptance of FC spread rapidly as parents and teachers welcomed a technique that allowed them for the first time, to enjoy communicating with their children. FC quickly became a social movement as autistic people (accompanied by their paid facilitators) were integrated into regular schoolrooms and apparently semi-comatose people earned university degrees.

Under the sway of FC, psychologists and speech pathologists revised their diagnoses, physicians altered their prescriptions, IQ test results were scrapped and program recommendations were tailored to accord with new "facilitated" findings. And a raft of new career possibilities opened up in the fast expanding field of FC. Some skeptical voices were raised, but few people wished to play the role of "wet blanket."

Then something ominous began to happen. Until this point, the messages that disabled FC clients were tapping out on their computers and letter-boards had largely been charming, childlike poems or poignant descriptions of love and frustration. Now, first in just one or two places, but soon spreading rapidly across North America, the nature of the messages began to change. The facilitated children and adolescents began, en masse, to allege horrendous sexual abuse by family members (and sometimes others) - usually recounted in explicit, pornographic detail.

As the new rash of messages proliferated, school and program administrators, physicians, social services and police agencies became involved. Charges were laid, families were broken up, and everyone involved was subjected to a long, horrendous ordeal.

Eventually, the whole business collapsed. Rigorous testing revealed that test subjects' apparent recognition even of cards showing single letters or simple pictures ceased once the facilitators were prevented from seeing the cards. Testing was extensive and varied; the results were the same. Like the users of a Ouija board, the facilitators were communicating without knowing it. And their benign, unconscious group fantasy of love and communication had turned into a malign, equally unconscious group fantasy of mass sexual abuse.

FC is still used, and taught, in some American institutions; all manner of rationalizations are employed to justify it. But the technique is discredited, and the bubble has burst.

How does this relate to AIDS treatment? Dr. Gina Green, an expert in the fields of autism and mental retardation, has made a careful study of the Facilitated Communication phenomenon. Observing that many novel treatment techniques share similar characteristics and surrounding phenomena, she has suggested nine components of novel treatments that, she believes, often combine to "make up the structure of what might be considered a social movement." Though these components were developed from her study of Facilitated Communication and other treatments for the developmentally handicapped, she has remarked that "parallel phenomena occur in other areas, such as treatments for AIDS..." (Even some of the terminology is identical: novel techniques in both fields are called "interventions," suggesting benign intrusion into an otherwise unalterable state or process.)

Here are Dr. Green's nine characteristics of "treatment as a social movement."

1) Assertions that a new technique produces remarkable effects are made in the absence of solid objective evidence, or what little evidence there is becomes highly overblown.
2) Excitement about a possible breakthrough sweeps through the communities of parents, teachers, service providers, and others concerned with the welfare of individuals with disabilities.
3) Eager, even desperate for something that might help, many invest considerable financial and emotional resources in the new technique.
4) In the process, effective or potentially effective techniques are ignored.
5) Few question the basis for the claims about the new treatment or the qualifications of the individuals making them.
6) Anecdotal reports that seem to confirm the initial claims proliferate rapidly.
7) Careful scientific evaluation to determine the real effects of the technique are not completed for some time, and can be made more difficult that usual by the well-known and powerful effect of expectancies.
8) Some of these techniques have small specific positive effects, or at least do minimal harm.
9) Eventually they fall out of favor, sometimes because they are discredited by sound research, sometimes simply because experience reveals their lack of efficacy, but probably most often because another fad treatment has come on the scene. Each retains some adherents, however, and some go relatively dormant for a while only to emerge again.

Dr. Green's suggestion that her characterizations are relevant to AIDS treatments seems well taken; every one of her categories could be applied to currently popular AIDS drugs. The whole story of Facilitated Communication illustrates how powerfully expectation and group fantasy can influence the therapeutic process. If we believe autistic children are enraged at their abusive parents, they will tell us precisely that. If we believe gay men are destined to die young, we will contrive, quite unintentionally, to bring it about.

Both conditions - autism and HIV Positivity - are generally regarded as intractable, causing frustration, depression and burnout in caregivers. Cures are desperately needed. In both situations the initial benign results of new therapies have been followed by more disturbing effects. Like Facilitated Communication, AIDS combination therapies fit Dr. Green's criteria of a "social movement." In addition, their sacramental nature invests them with a key role in the cult phenomena surrounding AIDS and the Positive Lifestyle.

One acquaintance of mine, a "long term survivor," offers his rule of never taking any proposed new treatment for at least a year or eighteen months after it has come into general use. He finds that very often, after that prudent wait, the fad has passed, many of the enthusiasts have either died or moved on, and yet another lucrative new treatment is making its much-heralded debut.

Ian Young is a poet and psychohistorian living in Toronto. His most recent books are The Stonewall Experiment: A Gay Psychohistory (Cassell) and The AIDS Cult (Asklepios). Ian Young Books

Bibliography

Conlan, Mark Gabrish. "Protease Expert Dr. David Rasnick" in Zenger's, November, 1996.
Farber, Celia. "AIDS, Words from the Front - The Year in Hype" in SPIN, Vol. 12, No. 10, January, 1997.
Green, Gina. "Facilitated Communication: Mental Miracle or Sleight of Hand?" in Skeptic, Vol. 2, No. 3, 1994.
Rasnick, David. "Inhibitors of HIV Protease Useless Against AIDS" in Reappraising AIDS, Vol. 4, No. 8, August 1996.
Schmidt, Casper. "The Group-Fantasy Origins of AIDS" in John Lauritsen and Ian Young (eds.), The AIDS
Cult: Essays on the Gay Health Crisis, Provincetown, Asklepios, 1997.
Young, Ian. "Thinking Positive: The AIDS Cult and Its Seroconverts" in The AIDS Cult, ibid

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