AIDS Treatment as a Social Sacrament

By Ian Young

HIV Realist Dec. 1998

Though some of the initial magic has worn off, drug company cocktails still retain something of the aura of an elixir among the Proud Citizens of the HIV Positive Community. Many people - most of them gay men, pregnant Black women or drug addicts - have now been prescribed these medicinal combinations as they sit, stunned and inattentive, in their doctors’ offices, having just received their Positive test results.

Though the official terminology suggests something rather devil-may-care in a martini glass with an olive and a paper umbrella, it also signifies the joining of cock and tail - a sexual union (sex, whether overt or subliminal, is always good advertising). Sometimes cocktails even replace sexual union as many of the men taking them are rendered impotent.

It is curious that these medicinal Cocktails have arisen just as the alcoholic cocktail is making a social comeback. The prescribed Cocktails, though, 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 and killing people. The problem is that when tested in humans, the Inhibitors showed no beneficial effects on the actual health of the test subjects. But the manufacturers were undeterred and somehow the Cocktail hit the market - a lucrative combo of new and old toxins with a festive new label.

The Cocktails have been aggressively promoted, not only to physicians through drug company literature, but directly to potential consumers through large, full colour ads in AIDS Lifestyle magazines like POZ. These ads show Cocktail consumers crossing oceans in small boats and climbing high mountains with their buddies.

Some people have been unable to endure the Cocktails or have succumbed to heart attacks after taking them. Others have developed severe gastrointestinal problems, diarrhea, vomiting, liver damage or diabetes. But the most notorious consequence is a syndrome of wasting limbs and other unpleasant physical oddities with names like "Crix belly" and "buffalo humps" that are familiarly known as the "Quasimodo effect" or, more discretely, the "Q effect". 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, like Lazarus, from their death beds and returning, unlike Lazarus, to their tennis games. (For some reason, recovering the ability to play tennis is frequently mentioned by reporters enthusiastic about the Lazarus phenomenon. Perhaps they are thinking of Arthur Ashe, the most prominent heterosexual claimed as an AIDS death, Magic Johnson being apparently reluctant to take his place.)

Of course there are the party-poopers. Among them is the protease expert Dr. David Rasnick. Rasnick doubts that protease inhibitors can do HIV+ people any good. As the Inhibitors must, like communion, 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 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 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 courageous young man who was the star volunteer - the fool who rushed in where angels feared to tread - died. And baboon bones were never heard of again. No money in them.)

But just because a drug is discredited does not mean it is no longer prescribed. If it is profitable, 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. It is absolutely essential, we are told, that patients take their cocktails at regular intervals during the day ("the cocktail hour"), and never miss a dose. Should even a single dose be skipped, "the virus," which is as clever as it is deadly, will fiendishly seize its opportunity, and all previous doses may well be rendered ineffective. (In California, the fetish of the regular dose is so strong that San Francisco’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 repeatedly; repetitive regularity is no less important than 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 slick 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, dedicated 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 have been re-introduced, and once again have 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 consumerist 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 "on" 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 has become the elixir, the Grail, of the Positive Lifestyle. All medicines have a sacramental component and drug consumption is almost always ritualistic. And any medicine endowed with the magical rejuvenating properties claimed for the Cocktail will also 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 revealing complex, sophisticated thoughts, and revealing them 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" by their therapists and social workers, 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 retailored 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 rationalisations 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 Facilitated Communication. 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 tecnique are not completed for some time, and can be made more difficult than 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, the Testing Ritual and the Positive Lifestyle.

Group fantasies are often acted out as group rituals - social sacraments. The group fantasy of mass parental sexual abuse was acted out in the social sacrament of facilitated communication/communion. The group fantasy of the Homosexual as doomed Grotesque is acted out in rituals of the HIV test (now the principal rite of passage for young gay men in North America) and of the Cocktail Hour (the regular ingestion of chemical toxins).

The PWA is the modern equivalent of the leper: like what was called leprosy in the premodern world, AIDS is a term that covers many different afflictions. This modern sexual leprosy is imagined to be healed by the cleansing scourge of teratogenic - and often anaphrodisiac - toxins. And the homosexual rises from his death bed - to play tennis. This is the much talked about "Lazarus effect," the Biblical Lazarus being associated with resurrection and leprosy. Resurrection from a leprous death is imagined to be the ultimate result of the Quasimodo cocktail. Once awarded the dreaded (yet repeatedly sought) Positive diagnosis, the patient is given a choice between leprosy (AIDS) and resurrection (if only as a monstrosity). And here the social sacrament implodes - into solitude, fear, despair, dementia and suicide.

Unlike some earlier medicines, like aerosolized pentamidine, that two or three could inhale together, this is definitely a cocktail for one. We are back at Jekyll and Hyde, that primal fable of male duality that suggests both the homosexual and his discoverer, the scientist. In Stevenson’s classic tale, the good doctor’s wicked alter ego is thought by some to be his lover, living with him in their "blackmail house." Today of course, many AIDS doctors are themselves AIDS patients. In any case, the relationship is often an unusually close one. "My doctor is a sweetheart!" How often we hear those words. They have become another of the slogans of our brave, unquestioning HIV Positive Community.

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 was born in London. His involvement on the gay movement, as activist, writer and publisher, began in th 1960s. His books include the ground-breaking gay psychohistory The Stonewall Experiment, as well as poetry, literary anthologies, bibliography and history. Director of a communications consultancy firm and a frequent contributor to the gay press, he lives in Toronto and Banff, Alberta.