Doctors who do not accept the official line on AIDS can find themselves in a lot of trouble. — Harris L. Coulter
Institutional life today is dominated by the buzzwords of the managerial revolution: devolution, entrepreneurship, quality control, outcomes management, merit protection, cost-effectiveness, accountability, equity, client empowerment. Each is the index term for a set of instructions that employees implement when managers give the signal. In this way the activities of millions can be coordinated across institutional boundaries; and executive officers congratulate themselves that they are in control, not just muddling through.
Alas, there is evidence that the software bequeathed by the managerial revolution is the shining path to acquired helplessness. Most OECD nations are awash in institutional failures. Accountants didn't notice the missing billions when they audited the financial statements of the Bank of South Australia, WA Inc, and Victoria's Tricontinental merchant bank. We lavish funds on secondary education, but 85-90% matriculate with serious deficiencies in written English expression; the number of the numerate is few indeed. According to employers, many leave the university not much improved. Something is wrong.
This book is about acquired helplessness in one area of our national life, the AIDS epidemic. The Commonwealth Department of Community Services and Health has designated it "the nation's most significant threat to public health". Presumably the First Assistant Secretary who wrote these words meant "the most significant threat to the nation's health". But the grammatical lapse suggests one thesis that I argue: that the management systems in place have immobilised governmental capacity to review AIDS thinking and programs in the light of new evidence about the epidemic. If that be so, then the grammatical slip hints at my point — that we have managed to manage outcomes to the point that they are a health hazard.
On the face of it, the designation of AIDS as the most significant threat to public health is nonsense. Morbidity and mortality from AIDS is minor by comparison with other diseases. What makes it seem significant is the belief that AIDS is a viral epidemic, together with projections of HIV's spread. In that way health authorities conjure horrific mortality rates 10-20 years down the track, not to mention unaffordable health care costs.
This catastrophic vision is the AIDS mirage. I call it a mirage because health authorities embrace a contingent future as an incontrovertible truth. The passion invested in the viral epidemic dogma is transferred to the entire AIDS management program, so that the whole is seized by cataleptic rigidity (a panic symptom). Our AIDS management systems are incapable of reviewing evidence which shows that there have been mistakes about HIV causality, mistakes of diagnosis, mistakes about its transmission, mistakes about HIV antibody tests, mistakes about therapies. Indeed, the whole of AIDS science is in a confused state. Of itself this is not startling. HIV/AIDS doctrine is merely an hypothesis and the mortality rate of scientific hypotheses is high. But it has converted to full-blown faith. Scientists or administrators who voice doubt risk their careers. This regimentation is partly a product of the quality control mechanism of science, called "peer review". This too is one of our failed practices, subverted by the cronyism it was meant to prevent. This was admitted recently by a chair of the Australian Research Council grant panels, who said that peer review "is crooked, but it's the only game in town". The conformism imposed by peer review patronage is ordinary opportunism. But the people who lay down the HIV/AIDS doctrine have integrated that doctrine into professional and personal self-images.
These people are the wounded healers of my story. Such is their trauma that they cannot endure the thought of a world without AIDS. That is why they resist, as "dangerous" and "irresponsible", the best health news of this century-that there is no viral epidemic.
"Wounded healers" are carers grief-stricken for patients who died because of a treatment error. Since some may doubt the existence of such people, let me introduce you to a healer conscious of his wounds. He is Stephen Caiazza, a New York physician with a large practice among gay men: "I'm a doctor, and I've buried all those people, and their faces came to me at 3 o'clock in the morning . . . I missed that [syphilis] diagnosis which I shouldn't have missed . . . that's really horrible. You have to go through your own catharsis before you can face that. We doctors in New York are all [emotionally] exhausted." This is a rare testimony, not because of its infrequency, but because it got into print. In medical officialese, the vernacular "wounded healers" is replaced by the vague term "impaired physicians". If you look up the literature, you find that the common syndrome is a breakdown of the capacity to deal with human suffering. The common marker is alcohol and drug addiction, which affects 10-12% of physicians and nurses at sometime during their career. The medical profession doesn't say much about impaired physicians; it frightens the chooks.
Stephen Caiazza is unusual in another way. He noticed that the accepted description of AIDS' clinical signs didn't quite match what he was seeing in his surgery. He hit on the idea that AIDS was syphilis, called the "masquerade disease" because its symptoms are so varied. He guessed that his patients didn't test positive for syphilis because their body chemistry had been distorted by a combination of syphilis, antibiotics administered to control STDs, and recreational drugs. This brought him face-to-face with the deepest cut of all. Not only had his healing art failed, but his profession had failed with him. Oedipus, when he knew the truth, put out his eyes. Dr Caiazza suffered a breakdown that forced him to withdraw from practice for several years.
The syphilis diagnosis of AIDS symptoms was hit upon independently in several countries. It has been reported in medical journals. But in his study, 'AIDS and Syphilis: The Hidden Link, Harris L. Coulter describes how attempts by Caiazza and others to bring this diagnosis to the notice of physicians were cold-shouldered by the chiefs who set the boundaries of "appropriate medical practice". There are no research dollars to investigate the syphilis hypothesis or other alternative hypotheses. Why not? The reasons are explored in this book, but here is a preview.
If AIDS is syphilis in disguise, the treatment regime requires a drastic rehabilitation of body chemistry, not merely biochemical tinkering with the immune system. To purge the body of a host of toxins, the patient must adopt a strict regimen, which for gay men means relinquishing the lifestyle that for many defines the gay identity. Doctors know this. Gay men know it as well. The long-term survivors of HIV infection have all abandoned the gay lifestyle. But one mustn't say this. As a physician at San Francisco General explained: "if I tried to go around and advise AIDS patients that they had to [give up the lifestyle], I would be accused of quackery". The palatable substitute for "cold turkey" is the softer landing of "safe sex". The soft landing for AIDS patients is like the lifestyle soft landing devised for patients with cardiovascular disease, cancer and other conditions. The recommended dietary regimen for cardiovascular disease seems stern to patients when they encounter it. But it is pampering compared with the regimen that the naturopath imposes. Conventional medicine is more user-friendly. It was not doctors but alcoholics who devised the total abstinence solution for alcohol dependence. You have a problem with drink? Then stop drinking. It's costless, self-reliant, non-medical.
The treatment for syphilis, a common STD, is low-tech, unpatented, inexpensive antibiotics. The treatment for AIDS as a viral disease requires high-tech, toxic, costly drugs that are at best palliative and at worst lethal. In cash terms: $300-400 total plus possible recovery vs. $2000-5000 per year and death from the disease if not from the medical drug, AZT (zidovudine). Fancy drugs, high cost, and death enhance medical mystique. They also appeal to those powerful hidden persuaders in modern medicine, the pharmaceutical giants.
If AIDS is syphilis, then doctors have been in silent partnership with patients to produce the epidemic. The dramatic breakdown that came to light in 1981 was 10 years or more in the making. It means that AIDS arose from a symbiosis between patients and doctors, in which they agreed not to look to the roots of the many illnesses that gay men presented in clinics. It means, as Dr Caiazza believed to his dismay, that doctors have made a horrible mistake.] By 1981, the medical profession was already under heavy fire as being dangerous to health. Physicians had by then adopted the clinical, legal, and psychological strategies of "defensive medicine", meaning, defence against wounded and litigious clients. To acknowledge that AIDS arises by doctor-patient collusion to evade the basic rules of good health could trigger a searching examination of the role of medicine in modern society. That agonising reappraisal could be evaded by attributing AIDS symptoms to an unknown virus.
The viral hypothesis is well adapted to postpone the moment of recognition. It reaffirms the germ theory that lies at the foundations of modern medicine. Thus it enjoys plausibility with physicians as well as the public who have been inoculated with the germ theory. It recruits the support of scientists itching for a high-tech virus hunt. It activates the "Tally Ho!" pose of medicine, featuring gallant doctors in pursuit of low and cunning pests, whose carcasses will be triumphantly exhibited to the cheering multitude and to the Nobel committee. Culturally speaking, hunting viruses and making vaccines is a diversion from reckoning with modern medical practice as a cause of illness.
The syphilis hypothesis is not widely supported today among those promoting alternative hypotheses. I have mentioned it because Dr Caiazza's observations converge with current thought in three significant ways:
1. The case definition of AIDS is based on what critics believe to be diagnostic error. The visible sign of this is that the case definition of AIDS in the OECD nations is completely different from the African case definition.
2. Caiazza realised that the reliability of tests for the presence of infectious agents presupposes a background of normal blood chemistry. Evidence is now to hand that the HIV test is not specific for that virus but indicates positive for any one with a specific spectrum of antigens, such as haemophiliacs and Africans.
3. Caiazza was among the first physicians to experience the indifference of the AIDS mandarins to any ideas but their own. They remain steadfastly devoted to the viral hypothesis despite the 100% failure rate of vaccines and therapy. They dismiss unheard the alternative hypothesis currently proposed by a team at the Royal Perth Hospital. Led by biophysicist Eleni Papadopulos-Eleopulos, the team derive their explanation from a new understanding of cell metabolism, which predicts AIDS diseases as the consequence of cellular oxidative stress induced by a variety of toxins, especially medical and recreational drugs. Although it is completely different from the syphilis hypothesis, these hypotheses have two things in common: the pathology involves toxins artificially introduced into the body; and the illness is treatable at low cost. The Perth group have also drawn together the evidence of the Western blot diagnostic test for HIV and argue that it is not HIV-specific. If this is so, one of the three definitions of AIDS, a positive antibody test, rests on the failure properly to validate the test. In their view, it cannot be used to determine whether haemophiliacs or Africans carry the virus. They publish overseas because the clever country's medical journals do not want to know about this.
Our healers are wounded. They cannot endure the thought of a world without a viral epidemic.
If the future resembles the past, the response to these tidings is predictable. The truth managers will go into damage control. The intruder will be decried and the public browbeaten into submission so that futility may continue undisturbed.
The Tantrum Sanction is a distinctive form of medical aggression, about which I will have more to say. For now I point out that the Sanction violates the undertakings of the Commonwealth health services to health consumers. All Australians have a right to participate in policy discussions. This right is intended to empower clients vis-ê-vis health providers. Each of us, whether medically qualified or not, may claim a hearing for our views. In publishing this account of AIDS, I lay claim to the status of a health care consumer who has undertaken to communicate with his fellow Australians. Denunciation has no place in such discussions. I call on the relevant ministers to ensure that public authority is not abused to stifle discussion.
Finally, a note on style. We humanists believe that narratives — myth, legend, drama, yarns, stories, conversation—are one way that we endow life with meaning. Narratives break through faceless abstraction to exhibit named human beings acting and suffering. The basic event contemplated by this little book is humanity's encounter with the creature of its own making, scientific medicine. It is a sub-plot in the larger drama of humanity's encounter with science and technology. Many yarns about this encounter have been told; many more are still to come. The essential plot of the story I tell is not new. It was told by the medical scientist René Dubos in his wise book, The Mirage of Health. It was told again by Daniel Callahan in his courageous attempt to grapple with health care for the aged, Setting Limits. The story needs to be told many times, in many ways, because it is a big picture that challenges our sense of self and our sense of others. Lacking the philosopher's gift for evoking the big picture. I find safety and meaning in yarns. So in this study I tell many yarns to capture some facets of the basic plot. Yarns are not science, but they do contribute something to finding our way through the complex and baffling world of modern medicine.