|Content||The AIDS Mirage|
As a frequent visitor to Internet, I am pleased that this essay is available in that medium. The prodigious information available on Internet, and perhaps even more the opportunities for immediate, uninhibited inter-country discussion renews the tradition of the free press in a form scarcely imaginable only a few decades ago.
There have been several notable developments in AIDS research since the publication of this study in November, and rather a lot since the completion of the text in July, 1994.
One is the purported discovery of a new herpes virus said to be the cause of Kaposi's sarcoma (KS) in gay men with AIDS by Columbia University researchers Yuan Chang and Patrick Moore. At a press conference in December, 1994, the team disclosed finding unique DNA sequences from what may be a new type of human herpes virus in 93 percent of KS lesions from 27 deceased AIDS patients. The sequences generally were not found in the patients' non-KS tissues. Although the findings demonstrate only an association between the virus and KS, UCLA scientist Dr. Steven Miles is convinced that it is a new human herpes virus and that it very definitely is the cause of Kaposi's sarcoma. The Columbia study found the virus in the cancer tissue of all 21 subjects who had the disease, but of these only 11 were HIV positive. This seemed to rule out HIV as the cause of one the major AIDS-defining diseases. If the findings are authenticated, it means that HIV/AIDS hypothesis is invalid for one of the major AIDS diseases. Between 30-50 percent of gay AIDS patients develop KS.
Herpes virus was in the news again at a conference hosted by Dr. Robert Gallo in December 1994. At that time Konstance Knox and Donald Carrigan, of the Medical College of Wisconsin, presented new evidence that HHV-6 and HIV interact to cause the cancer. Knox and Carrigan studied specimens of tissue from autopsies of patients with AIDS, and found active and disseminated HHV-6 infection in patients with terminal AIDS. Using polymerase chain reaction techniques (PCR), HHV-6 was found in most anatomical sites. The wide distribution of HHV-6 in terminal AIDS patients was confirmed using immunohistochemical techniques, which also showed conclusively that the infection is active. On this model, both viruses are inactive until under certain conditions they activate one another.
There was also good news for those who defend the standard HIV/AIDS model. In January 1995, Dr David Ho and colleagues claimed to solve the mystery of HIV infection hitherto. It was that AIDS patients suffer profound destruction of T4 immune cells, yet HIV is scarcely detectable in such patients and when it is detected, it is inactive. How then does it destroy the immune system? The lack of HIV activity had figured prominently in scepticism that HIV is the cause of immunosuppression and AIDS. Dr. Ho rescued standard AIDS science from this eleven year embarrassment by quantifying the day-by-day production and removal of HIV. Between 100 million and 1 billion free virus particles are produced and cleared daily-a massive turnover that until then had not been detected. The discovery was hailed as explaining the mystery of how HIV causes AIDS-a query that sceptics have previously used to great effect.
Thus in the course of a few months, scientists provided new evidence for the standard model of HIV etiology, for the heretic model in which HIV does nothing, and the compromise cofactor model in which HIV is active only in association with another organism. This paradox can be partially resolved by noting that the evidence in each of these cases is very indirect and circumstantial; but that great pressure on AIDS scientists to get results tends amplify meagre findings into significant discoveries. This amplification process is called -science by press conference.
The public notice generated by publication of The AIDS Mirage gave me the opportunity to expand on thoughts for which there was no space of the initial publication. I have included the above statement on doctorless health.
Reviewers and critics pointed out several errors in the original version. These have been corrected in the present version.
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 persons 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.
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:
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-ˆ-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 Rene 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.
What God spared Egypt, Americans inflict on themselves.
AIDS is the most political disease of our age. Since the first cases appeared 14 years ago, the epidemic has become a battleground for culture wars, for parliamentary wrangles, and scientific dispute. AIDS has galvanised medical research into a scramble for health dollars. It won celebrity as a human rights cause, as a lawyer's bonanza and as a media sensation. In its short career, AIDS has become the most talked-about, anxiety-laden, fiercely contested, lavishly resourced, and withal the most wept-over illness of modern times. If the prestige of diseases is ranked by the resources allocated for care, therapy development and research, then AIDS is the most prestigious disease ever. The cause of this tumult is said to be a microbe unknown to science until 1983. Even before its discovery, the powers conferred on the minute entity rivalled archetypal legends of pollution and plague. It was said to be the cause of not one, but three, then 16, then 25 and now today 29 diseases-an unprecedented feat for any microbe in the history of human illness. Like the Greek fates, it gripped the afflicted in its iron maw and dragged them to inexorable doom. As one AIDS patient put it: "I felt that a microscopic junta had seized my body; I was under its command". The virus, when it was discovered, baffled science. The comprehensive report of the Institute of Medicine/National Academy of Science, Confronting AIDS (1986), may serve as a benchmark. The report stressed that the progress of AIDS science was slowed by the poorly understood, complex interactions of a wide variety of cells that make up the immune system. The report acknowledged that the mechanisms by which HIV depletes T4 cells "remain mysterious". "Mystery" is the right word, for HIV is a freak that defies the rules of disease causation. With all other infectious agents, the quantities of the microbe greatly increase as the disease progresses to greater virulence. Yet this is not so for AIDS. Not only is there no or little increase in quantities of HIV as the disease becomes more virulent, but high levels of HIV antibodies are present in the terminal stage. How was it possible for HIV to massacre T4 cells without greatly multiplying? In recent years, scientists have increasingly abandoned faith in this etiological miracle. The premier advocate of the HIV/AIDS dogma, Dr Robert Gallo, admitted at a recent conference that his laboratory has never recovered HIV from T4 cells. Yet he, more than any other scientist, produced the conviction that HIV causes AIDS by entering and destroying T4 cells. The latency period is also a puzzle. The original picture of cell infection shows HIV entering a T4 cell, converting to a provirus, and then going to sleep. This is the kind of thing that thousands of silent microbes do as "passengers" in the human body. But then it wakes up and ravages the immune system. Why does it wake up? This is the problem of "cofactors". At this moment it is a watershed in AIDS science. Those who believe in cofactors argue that HIV isn't quite the lethal agent it has been made out to be. It is a harmless passenger except when Factor X intervenes. The discoverer of HIV, Luc Montagnier, holds this view. He proposes that the cofactor is the bacterium derivative Mycoplasma fermentans, which is implicated in one of the major AIDS defining diseases, Pneumocystis pneumonia (PCP). Danish doctors who controlled Mycoplasma with antibiotics achieved remission from PCP. Since 1992 Montagnier has promoted antibiotic control of HIV by the indirect method of controlling its supposed bacterial cofactor. Robert Gallo, for his part, promotes his newly discovered herpes virus, HHV-6, which infects T4 cells, as a cofactor influencing the differential rates at which HIV+ persons progress to AIDS. HIV is the only microbe that behaves differently according to the geographic location of its host. In Africa it acts like other infectious agents, attacking male and female alike. But in North America and Europe it is sociotropic, seeking out adult gay men and intravenous drug users. Moreover, the risk factors vary by geography. In Africa they are not receptive anal intercourse and drug use, but parasitic diseases and malnutrition. Reports in the Western press of the horrendous levels of HIV infection in Africa, and the coming "depopulation" of the continent, are based on immunoassay tests whose reliability has been challenged. Professor P.A.K. Addy, Head of Clinical Microbiology at the University of Science and Technology in Kumasi, Ghana, states that "Europeans and Americans came to Africa with prejudiced minds, so they are seeing what they wanted to see . . . I've known for a long time that AIDS is not a crisis in Africa as the world is being made to understand." As one wit put it, in Africa the AIDS virus is the Human Rumor Virus. Management of the epidemic depends on the assumption that the test for HIV antibodies is a reliable indicator of the presence of the virus. Under the Australian definition of AIDS, an HIV+ test classifies patients as Category 3 AIDS. However, scientists at the Royal Perth Hospital argue that the most specific HIV test, the Western blot (WB), is unreliable. The problem, they say, is that cross-reactivity of sera proteins defeats the specificity of the tests. The tests detect HIV in haemophiliacs, leprosy patients and other cohorts who do not progress to AIDS. This view is shared by Philip Mortimer, Director of the Virus Reference Laboratory in London, who states that owing to the want of WB specificity for HIV, "it may be impossible to relate an antibody response specifically to HIV-1 infection". This creates an ethical challenge for AIDS case management. Are persons who test HIV+ being told by counsellors that the specificity of the test is in question?
HIV's weird ways as a cell pathogen present a further paradox. Lab data show HIV-associated cell death to be far less than natural T4 cell death. This means that the immune system's normal replacement of normal T4 cell depletion is handily superior to HIV's supposed killing rate. How then does HIV shatter the immune system? Does it work by proxy? Does it, like a small contingent of commandos, trick lymphocytes by changing the surface proteins they use to recognise one another? Are T8 suppressor cells killing off the T4 helper cells? This is the multi-antigen-mediated-autoimmunity (MAMA) hypothesis of Robert Root-Bernstein, which states that a combination of antigens compromise immunity by causing the immune system to turn against itself. Despite these uncertainties about the microbe's attack on the body, its assault on the mind was immediate, violent, and overt. The purple splotches that are the first signs of Kaposi's sarcoma triggered anxiety and depression among gay men. The need for crisis counselling was quickly recognised; today crisis counselling is a major part of AIDS care. The warning sign from 1985 was not symptoms but the results of HIV immunoassay tests. Test results are so dreaded that counselling is made available before and after the test. By 1988 AIDS counsellors had identified a syndrome that they called AFRAIDS. It affects people who believe that they have the virus although they test negative. Their symptoms mimic seroconversion symptoms of weight loss, night sweats, and diarrhoea. A positive test result is usually interpreted as a death sentence of uncertain execution date. In awarding three haemophiliac boys compensation against the Commonwealth Serum Laboratory and the Australian Red Cross, Victorian Supreme Court Justice Ashley told the boys that $1 million compensation "might not seem a great amount of damages for someone who, without any fault of his own, has received a premature death sentence".
The attack on the mind is not limited to affected individuals and their loved ones. Effects on communities began in 1981 as an alarm cry among gay activists and infectious diseases scientists. This handful of men and women recognised a mission to warn gay men of an awful threat stemming from their lifestyle. At first they were shouted down. As Randy Shilts describes in And the Band Played On, the gay press denounced the idea of a "gay plague" as yet another bout of self-hatred among gay men, in league with heterosexual disgust with the gay lifestyle. The battleline was drawn at bathhouses. The "alarmists" wanted them promptly closed. Closure would slow transmission of the infectious agent while having the educative effect of alerting gay men to epidemic danger. Yet bathhouses were a symbol of gay liberation, and the bathhouses experience was interwoven with gay consciousness. To allow public health officers to close the bathhousess was to endure a mighty defeat to gay power. The alternative course-that the gay community should take the initiative in their closure-would be a public retreat from gay liberation. Three years of struggle passed before bathhousess were closed. In that period gay consciousness reacquired inhibitions that had been discarded. Next it was the turn of heterosexuals. The media took scant notice of AIDS until 1984. The turnaround event was the announcement, in April, that government scientist Robert Gallo had discovered the viral cause of AIDS. The high level press conference convened by Health and Human Services Secretary Margaret Heckler made world headlines. Public belief that AIDS is a viral epidemic may be dated from that moment. Gallo's virus gave credibility to the speculation that blood-products from blood banks may be contaminated. Blood suppliers moved quickly to implement costly procedures to ensure blood product safety. However, according to Shilts, the public were finally convinced of the reality of AIDS only when the film celebrity Rock Hudson was stricken and died in 1985. Hudson, a closet gay, was for most fans the epitome of heterosexual romance. That paradox somehow communicated the message that AIDS was a threat to heterosexuals. It made a large impact on President and Mrs Reagan, who had long been friends with Hudson. From that moment, the previously silent White House gave its blessings to the war on AIDS. Funding shot up from $61.5 million in 1984 to $766 million in 1987 and $1 billion in 1988.
By 1987, media reporting on AIDS and safe sex education had penetrated the consciousness of most sexually active men and women. The US Surgeon General summed up the effects of the massive campaign by declaring that "AIDS has killed the sexual revolution". There were many signs prior to AIDS that the balmy days of user-friendly consumer sex were in eclipse. Playboy Clubs--those heterosexual bathhousess--closed throughout the world; the Playboy empire narrowly missed collapse. Signs of sexual anxiety were ubiquitous. Rape and child sexual abuse became a media obsession. And the first cases of child sexual abuse remembered in adult years came to light. Called today the "false memory syndrome", it is a highly contagious therapeutic suggestion expressing unresolved conflicts about sexuality. Also to be counted in the toll of anxiety is the adoption, in the last decade, of rules against sexual harassment and sexist language. Casual relations between women and men that permitted touching and frank expression of desire were out, together with mini-skirts, cleavage, and one-night stands. That working class amusement, wolf whistles from construction sites, were out; good manners and baggy clothing were in.
The HIV virus also vexes the minds of scientists. I have mentioned their perplexity about its strange ways as a disease agent. They urgently called for and obtained massive research funding that today enlists about 10, 000 scientists who produce 7000 publications per year. Despite this surfeit of truth, there exists no article that critically reviews the evidence for HIV's destruction of cells and demonstrates that such destruction creates "opportunities" for diseases as diverse as dementia and tuberculosis. The cry of helplessness was sounded last year by Science in reporting findings of the 9th Annual World AIDS Congress in Berlin. In noting that neither a cure nor a vaccine was remotely on the horizon, the editorial stated that "the more rapidly knowledge of the disease accumulates, the faster assumptions that seemed solid a year ago begin to crumble". This means that the taxpayer is funding more research so that less will be understood.
This mirage is not the only sign of the AIDS virus' assault on the mind. The identity of the virus has been the source of confusion, law suits, and recriminations. For two years, AIDS science accepted that three viruses caused AIDS-Gallo's human T-cell lymphotropic virus type III (HTLV-III), the Pasteur Institute's lymphadenopathy-associated virus (LAV), and Jay Levy's AIDS-associated virus (ARV). Although there was much rejoicing that the viral agent had been found, which was it exactly? Gallo and Montagnier, ardent for the Nobel Prize, fought for acceptance of their respective discoveries. In 1986 an international nomenclature committee decreed that Gallo had erroneously classified his virus as an HTLV type. It belonged instead to the same viral family as the Pasteur Institute's LAV. Jay Levy's ARV was also deemed to belong to the LAV family. The committee made a fresh start by naming the AIDS virus "HIV" (human immunodeficiency virus). Gallo strongly protested this decision. He maintained that LAV was a laboratory contaminant, and that the mechanism of the viral cell damage was inextricably bound up with the HTLV type of viral activity. Montagnier, on the other hand, maintained that Gallo's virus was pinched from a sample of the virus that he had sent to Gallo.
Thus the rival architects of AIDS science attributed delusion to one another, and AIDS science was stuck with the embarrassment of two or three AIDS viruses. More of this was to come. Once the technique for HIV isolation was developed, the hunt was on. In 1986 Montagnier's group isolated a variant, HIV-2. The patient had not come from an AIDS region of Africa and he produced no antibodies to HIV-1. On the other hand, HIV-2 was also found in a group of prostitutes who were free of AIDS. In 1987 the laboratory of Myron Essex found HTLV-IV, Gallo found HIV-3, and a Swedish laboratory discovered HTLV-V. The relationship between these strains of AIDS viruses, and their causal relation to the disease, is a matter of speculation. In 1987 another mirage appeared on the AIDS battlefield. Writing in Cancer Research, Peter Duesberg undertook a detailed examination of the evidence adduced to support the belief that HTLV-I causes some types of leukaemia and that HIV-1 causes AIDS. He concluded that the evidence in both cases was suppositious and in conflict with basic rules for infectious diseases. He made the point mentioned above, that the quantity of HIV in AIDS patients is far less than what is required for infection. The titres of HIV in AIDS patients varied from 0 to 100 particles per millilitre. By contrast, titres of other infectious agents must reach billions or trillions per millilitre before they become pathogenic. Duesberg also cited rigorous laboratory work to recover HIV from the T cells of AIDS patients. In a sample of 91 patients, three had no HIV. This was proof, he claimed, that HIV is not a necessary condition for AIDS. This was a serious criticism from a serious source. The discovery of reverse transcription by Howard Temin and David Baltimore won them the Nobel Prize because of the significance attached to the reverse transcription ("retro") process, in which an RNA virus converts itself into a DNA provirus. The discovery stimulated speculation that reverse transcriptase might be the mechanism of virus-induced cancer. Duesberg was among the young scientists who bought a ticket on that train (Robert Gallo was another). He led the race by elucidating the genetic nature of the retrovirus family and mapping the three key genes gag, pol and env. There is nothing inherently implausible about Duesberg's criticism of the evidence for HIV causality. The progress of science is littered with the bones of false starts and superseded theories. One such belief is that the reverse transcriptase enzyme is something special. It isn't. The enzyme is natural to the human genome. When Duesberg's criticism is combined with the Royal Perth group's theory of cellular oxidative stress, and their criticism of immunoassay tests, a comprehensive view of the foul-up and the right road ahead emerges. It is this. AIDS diseases are not viral. They are caused by introduced toxins. The indicated therapy is to use reducing agents to halt the oxidisation of cells by these toxins and prevent further introduction of them. At first Duesberg's alternative attracted notice from the scientific press as a startling case of a talented scientist who had run afoul of orthodoxy. The truth managers--influential journal editors and heads of institutes--branded him pariah and he was ostracised by colleagues. The Royal Perth group didn't get a hearing at all. This is odd. Faced with what they said was the gravest health crisis of the century, the AIDS establishment did not do what rational method would seem to suggest: to investigate the alternative hypotheses with all vigour. The opposite happened: the alternative case was cast aside as "lunatic". A clue about why alternative hypotheses are dismissed emerges from a recent book. In The Plague Makers: How We Are Creating Catastrophic New Epidemics-And What We Must Do to Avert Them, Jeffrey A. Fisher, MD, argues that the mass prescription of medical drugs, particularly antibiotics, contributes significantly to viral overload and/or immune suppression, which in turn multiplies the incidence of illness. He points out that doctors have created plagues in hospitals. In the US there are two million hospital acquired infections annually, resulting in a mortality of 80,000. That is three times the annual mortality from AIDS; yet the medically induced epidemic is scarcely noticed. This is only one item in a long list of sicknesses, side-effects and injuries acquired from doctors and clinics. Seeing AIDS as a calamitous plague expresses this predicament allegorically. It tells the story of doctors wounded by the failure of their healing art, and distressed by the half-conscious sense that modern therapeutics may abet sickness and suffering. We may call this predicament the Acquired Anxiety Syndrome.
The signs of this Syndrome are the daily diet of newspapers. There is incessant reportage of the aggression, mayhem, litigation, suffering, misunderstanding and politicking that occur in the health arena: incorrect surgery; misdiagnosis; a drug that killed or maimed; a host of diseases transmitted in hospitals and through blood banks; large compensation payouts for an IUD or silicone implants; therapeutic advances that prolong chronic illness; disputes about the causes of illness and the effectiveness of therapies; client disaffection about waiting lists; abuse in psychiatric wards; the revolt of women against reproductive technology; patients abusing doctors for saving a life not worth living; disability groups attacking initiatives to eradicate heritable diseases; spiralling health care costs; $7 million spent by the NSW Medical Tribunal to strike one doctor from the lists; health managerial reforms to control of "outcomes"; a panel commissioned to steer the health minister out of a tight spot. Earlier this year, a New South Wales court awarded Rhonda O'Shea a large settlement because it found that her doctor and the pathologist had been negligent in failing to diagnose indications of cervical cancer from a Pap smear. Expert testimony given to the court revealed that the false positive and false negative rates of Pap smear are a "closely guarded secret". The secret is being kept from patients like O'Shea who, if they had the information, might follow her example: "I want to make clear to people that just because their doctor says something, it is not gospel . . . what I have learned is to take the issue into my own hands".
The progress of medical science in the last hundred years has
been stupendous. The ultimate goal of medicine, the
eradication of disease . . . is no longer Utopian. --Henry E.
The right to a long life, which is theoretically
averaged at 100 years, is a basic right of every individual.
--Hiroshi Nakajima, Director, WHO
Our heroes are a medical elite
whose institution is the Centres for Disease Control (CDC), a
branch of the US Public Health Service. They are a special
breed whose tasks mingle medical forensics with diplomacy,
intelligence gathering, and rapid response capabilities. The
intelligence gathering is meant to be so sensitive that no
case of infectious disease diagnosed in a nation of 250
million escapes its notice. The organisation is wired up for
around-the-clock surveillance when need requires, and for
rapid response to any threat to health from biological agents
suspected to be infectious. The CDC expresses the public will
to prevent and conquer infectious disease.
In February 1976 an army recruit at Fort Dix, New Jersey, died in what the CDC called a "respiratory epidemic" on the army post. Examination revealed that the lad carried an influenza virus similar to influenza A virus causing illness in swine. A search of the army post discovered five other confirmed cases, and eight probable, among the 500 troops who went on sick call with respiratory complaints. The CDC's vigilance systems were triggered. The new virus was thought to represent a major mutational shift in human influenza viruses. There was no immunity to it in the general population. Could it cause a national pandemic? If so, would it be as virulent as the 1918 virus? It seemed that the very scourge that had caused nations to establish infectious disease control agencies had now returned to put modern infectious disease control systems to the test. The 1918-19 world pandemic had taken 20 million lives, 600,000 in the US. The spectre of that calamity is the reason why, on the basis of one death and 13 cases, all at the same site, the CDC called a national epidemic. The Centres created two panels of experts charged with providing statistically valid advice. The two panels did not agree on the probability that a pandemic would occur. One panel rated the probability at 10-25%, the other at 40%. The panels did agree that if the pandemic occurred, and no protective measures were taken, there would be 56 million cases of swine flu. The attack rates would be highest among the young and would decrease with increasing age. They predicted the death rate to be 23.4 per 100, 000; in raw numbers, about 55, 000 deaths.
This is scary stuff, but Washington is bloated with bogus
advice from glossy experts. Skilful lobbyists representing
interests of all descriptions peddle panaceas. To the
medically untrained mind that deals constantly with deceptive
persuasion, the CDC's forecasts seemed far-fetched. How then
did it mobilise the political establishment? It was easy. The
CDC was then one of the few remaining credible government
agencies. It enjoyed an untarnished reputation as a
responsible, dedicated, internally harmonious, well-informed
agency untouched by scandal. This reputation gave its
Director, Dr David Sencer, the clout he required. Less than
six weeks after the first case diagnosis, he had rallied
America's senior health officers behind his proposal for a
$135 million crash program to inoculate 210 million Americans.
On 24 March, President Ford told a press conference that
"every man, woman and child" should be vaccinated, and that
the government would see that the necessary supplies were
available. 1976 was an election year. Congress quickly agreed
to the President's package. The media fell in by giving
currency to the CDC's tag line, "killer flu stalks the
nation." When the vaccine was delivered in late September, not
one new case of swine flu had been reported in the US since
the Fort Dix "epidemic". Indeed there was none in the Western
Hemisphere. Volunteers who submitted to experimental infection
with the new virus suffered only a mild illness. Public
support for inoculation had faded. Opinion polls revealed
indifference, and comedians cracked election season jokes
about President Ford's "Flugate". Editorials in the media and
in the medical press were calling the epidemic a false alarm.
The CDC remained steadfast. Where others saw in the Fort Dix
statistics 13 mild flu cases, the CDC saw one death and
extrapolated to 55, 000 deaths. It countered public
indifference by a renewed education campaign. As June Osborn,
a CDC scientific advisor, explained: "The successful practice
of public health requires salesmanship of a high order". The
CDC is skilled in marketing anxiety. The inoculation of what
would eventually be 45 million persons commenced on 1 October.
Trouble quickly developed. Three weeks on, 41 deaths were
associated with vaccination, but the CDC's investigations
showed that this was a statistically normal rate of mortality.
By mid-November, 11 cases of neurological damage from the
vaccine were reported; a month later, this number had
increased to 54, with 10 fatalities. There was still not one
new case of flu, but prevention was creating a medically
induced epidemic. On 16 December Dr Sencer announced
suspension of inoculation until adverse side-effects could be
investigated. His attempts to restart the program two months
later failed and the vast project was shelved. In all, 52
persons died of side-effects, 500-600 were impaired or
hospitalised, compensation claims reached $1.7 billion, and
not one case of human-to-human swine flu infection was
reported outside Fort Dix.
The swine flu mirage triggered evaluations of epidemic management. In their study of decision making in this case, policy experts Richard Neustadt and Harvey Fineberg found fault with developing a vaccine of unknown risks when there was no evidence of an epidemic. They wrote: "The threat was never established . . . in the absence of manifest danger, [inoculation] was a mistake . . . since research has not yet found a good predictor of virulence, one may have no means to establish in advance the severity of a presumed pandemic". This is a soft landing for the CDC. Neustadt and Fineberg do not report central facts relevant to the CDC's epidemic mismanagement.
A proper review of the swine flu episode, and corrections made accordingly, might well have spared us the AIDS epidemic. Let's look at what such a review might have indicated.
Public health services operate in an environment of high public expectations. June Osborn described it well: "Ironically the very success of medical science [has] distorted the image of its practitioners . . . the discovery of antibiotics and vaccines at first awed the public but later made them as demanding as spoiled children". The child was spoiled because Mother Medicine had accustomed the public to demand feeding. Or to change the metaphor, doctors and patients had come to regard medical service as a smash repair shop. When something is broken, you take it in for a fix, the quicker the better. Health is not thought of as an ongoing condition to be lived and striven for. Instead it is an endowment that from time to time is compromised by injury or sickness.
Doctors and government promote this mechanical notion of health. Its trinity is Diagnostics, Pharmaceuticals, and Surgery. Omitted from the conception is prevention, and its associated conception of health as natural therapy actively lived. Prevention is not funded by medical insurance. Doctors have no time to instruct patients on how to live healthily. They write a contract with patients that reads: "You smash, we repai". No thought is given by doctors, patients, or governments to the cumulative effects of injecting millions with medical drugs. The decision to proceed with the inoculation is understandable in this context. Had the vaccine not been administered, but an epidemic did materialise, there would have been a great outcry. Besides, public health agencies are committed to smash repair medicine of the utopian kind-conquering disease. This goal activates a cluster of powerful private and public motives. One is zeal in "saving lives". Doctors need only to inflect an anxious voice, shed some tears, and wave the "saving lives" flag to win the applause of millions of "spoiled children" (as June Osborn called them) for projects that are manifest nonsense, for example, "conquering disease" (equivalent to a promise of immortality). The nonsense is kept in countenance by exaggerating the effects of temporary local victories. Just before the onset of the AIDS epidemic, the CDC had celebrated two triumphs: it had developed a vaccine for hepatitis B and it had "eradicated" smallpox in Africa. In this vision, infectious microbes are not a natural, ineluctable part of the earth's biota, harming some organisms and helping others. They are alien invaders to be exterminated with the ingenious weapons of science. This attitude is so integral to contemporary medico-social thought that no alternative to it is ethically acceptable, at least not in our culture. But as a conception it is new. We need only step back a century to find in the West the same stoic attitude toward sickness that prevails in Asia and the Third World today. Among ourselves, diagnosis of an untreatable disease is a terrible experience, registered in the saying: "If you get AIDS, you die". But in Japan, the Zen master says: "Also if you don't get AIDS, you die". The transition from the older to the contemporary attitude toward sickness and death is expressed in Charles Darwin's reflection on the value of epidemic control. He wrote:
There is reason to believe that vaccination has preserved thousands, who from a weak constitution, would formerly have succumbed to smallpox . . . the weak members of society [thus] propagate their kind. No one who has attended to the breeding of domestic animals will doubt that this must be highly injurious to the race of man . . . [but] the aid which we feel impelled to give to the helpless is mainly an incidental result of the instinct of sympathy, which was originally acquired as part of the social instincts, but subsequently . . . rendered more tender and more widely diffused. Nor could we check our sympathy, even at the urging of hard reason, without deterioration in the noblest part of our nature . . . if we were intentionally to neglect the weak and helpless, it could only be for a contingent benefit, with an overwhelming present evil. We must therefore bear the undoubtedly bad effects of the weak surviving and propagating their kind.
Darwin was far enough into the transition to progressive values to forget his own insight that one season's survivors are the next season's mortality. The Zen master, if he were a biologist, might point out that the human species is host to many thousands of inactive microbial passengers, any of which can mutate into a harmful pathogen. Pathogenic bacteria, for their part, mutate into antibiotic-resistant strains under the pressure of medically induced selection. The "conquest of disease" will be a while coming. But Darwin was right about the "instinct of sympathy". The modern therapeutic state is geared to extend the appearance of compassion and assistance to all the suffering. I say the "appearance" because outcomes depend on adequate funding and much else. An advantage of the mechanical conception of health in democracies is that the patient is not required to be an agent in the healing process. Healing is conceived as technical skill in manipulating subtle and refractory organic processes. The patient is a bystander who, from time to time, may be conscripted to dietary or exercise chores. But for the most part doctors do not try to change lifestyles. This view of medicine's social role dominated the CDC's response to another epidemic that received scant public attention until after the damage was done. During the 1960s and 1970s, US doctors reported sexually transmitted diseases at the rate of 5-7 million cases per year. Thus the CDC knew the dramatic increase of chlamydia and the high rates of infertility that it causes. It knew of the increase of syphilis and of STDs that previously were rare. It was especially concerned about the spread of hepatitis B, which clustered in gay populations. It enrolled a cohort of 7000 gay men to study their lifestyle and viral load in connection with the search for a vaccine. From this study it knew that syphilis, gonorrhoea, and hepatitis B were endemic in the gay populations of the cities. Parasitic infections of the colon, known as "gay bowel", were also endemic. It was found that the annual hepatitis infection rate among gays was an astonishing 12%, as against a 1% lifetime rate for the general population. The stage was set for rapid transmission of unusual pathogens. Thus on the eve of AIDS, the CDC was fully aware of the increase of sexually transmitted disease and the possible bacterial and viral "bomb" that the sexual revolution had planted. It was of course concerned: it promoted improved clinical descriptions of STDs, particularly the interactions of simultaneous infections; and it promoted more effective therapies. However, it did not mount a vigorous safe sex campaign to reduce the incidence of STDs and to warn young women and men of the grave consequences of some infections. It did not because it was confident that antibiotics in the cabinet of every GP could restore health to those affected by STDs, no matter how many of them there were.
The AIDS virus attacks the mind. About 40% of AIDS patients develop neurological and associated psychological symptoms. They begin with a slowing of speech and thought, short term memory failure, and difficulty in concentrating. These deficits become more pronounced and new ones appear: deteriorated motor coordination, apathy, confusional states; then irritability, hyperactivity, incontinence, and delirium or mania, or both. As death approaches, the patient lies immobile, staring vacantly ahead, silent and unresponsive. The mind has been destroyed. These symptoms are indistinguishable from those caused by encephalopathic or cerebral atrophy conditions. Yet they are special because they terrify friends and lovers who know that HIV did it. The virus assaults the minds of about half those who are diagnosed to be HIV+. Although they may be otherwise healthy, they experience feelings of powerlessness, shock, isolation, anger, denial, guilt, anxiety, apathy, and suicidal thoughts. Depression and malaise disrupt work and social relations. These symptoms are indistinguishable from garden-variety panic and depression, but for one thing: HIV did it. The virus terrorises the minds of some people so much that they believe that they are infected even though they test negative. They mimic the mononucleosis-like symptoms of initial HIV infection. The syndrome is called AFRAIDS. It's indistinguishable from ordinary hysteria but for one thing: HIV did it. The virus brutalises the minds of carers, family and friends of AIDS patients. They experience grief, social withdrawal, and are at risk of chronic psychological disorders. Carers have recorded their anguish in witnessing the slow death: "He looked pathetically decrepit, his face almost unrecognisable from the skin lesions of Kaposi's sarcoma"; "There are simply no words in human language to express the suffering of any one person with AIDS"; "You could literally see every function in his body closing down one by one". Descriptions of this kind have been recorded for many diseases. The tertiary syphilis patient, for example, is ghastly. Large ulcers disfigure the face, scalp, trunk, and legs. The mouth and nose are eaten away; mind and brain are gone. This spectrum of wounds endured by carers of AIDS patients is indistinguishable from disturbances experienced by others who care for the dying, except for one thing: the patients in their care suffer from AIDS.
The virus attacked the minds of Sydney morticians so violently that they got up a law to prohibit viewing the remains of those who died of AIDS or of any unexplained infection. If the next-of-kin choose not to have the corpse cremated, it is placed in a sealed plastic bag by apprentices wearing disposable infection-control clothing. Politicians are at high risk from HIV mental attacks. During the 1984 general election, the Queensland Heath Minister startled the government by announcing that three infants were dead and a fourth was dying from contaminated transfused blood. It was the signal for the Opposition to pummel Labor's initiative to extend human rights protection to homosexual acts. A National Party leader blamed the deaths on Labor's "promotion of homosexuality as a norm". The Queensland legislature needed but one day to pass a law banning blood donation by anyone in a risk group. Hair-trigger though this response was, it did not satisfy a Sydney clergyman, who demanded that gay men be quarantined. The Prime Minister, thrown from his horse by the uproar, huddled with minders. The outcome was to call an emergency meeting of health ministers to consider strict guidelines for blood donation. It was much the same elsewhere. When the AIDS panic was at full tide in the US, state legislators introduced, in just one year, 450 bills relating to AIDS. No doubt about it, HIV drives people bananas. Those who suffer from the Acquired Anxiety Syndrome must number in the millions. It drives you crazy because you can't see the damned thing. Neither can scientists. The electron microscope lets them see virus particle concentrations in excess of 1 million per millilitre. But those concentrations of HIV haven't been found. Thus, as Donald Francis states, direct visualisation of viruses is often "difficult". So there's no telling where it will strike next. Innocent babes, the all-American idol Rock Hudson, a romper-stomper type right-wing activist, a sports superstar. God help us! Or does God side with the bug? Is the plague Jehovah's way of bringing corrupt, luxuriant nations back to the path of righteousness? Health bureaucrats easily refuted the quarantine proposal; rounding up millions, pinning them in special facilities for the duration of their lives, isn't the sort of empire Australians like to build. It's nuts. HIV doesn't spare clergymen. But AIDS scientists have no credible answer to the Jehovah hypothesis. Suddenly, from out of the blue, the wretched microbe struck in Kinshasa, Haiti, New York, Rio, Sydney. Virologists classify microbes into phyla and orders and try to date their evolutionary origin. All the viruses, bacteria, fungi, and parasites that pester us and livestock have been around for a long time; some protozoans for maybe a billion years. So AIDS must have been around for a long time. Yet there was nary a sign of it until 1981. The public had to be given a plausible scientific story about origins; otherwise evangelists would sweep the field with the Jehovah hypothesis. There was also the KGB to worry about. Using East German conduits, the KGB put out the story that the virus was a weapon devised in the US biological warfare program. This sensational notion was endorsed by a few reputable scientists and by British anti-vivisectionists, who said that HIV is a recombinant animal-human hybrid. The Strangeloves who allegedly masterminded this devil's work at the Fort Detrick biological weapons facility were named in some publications. They were scientists in leading universities. If the dark forces behind the scenes could assassinate President Kennedy, would they scruple about devising an unstoppable killer to use on the Reds, or Africans, or homosexuals? Here again the virus showed its incredible power to induce delusional states. The CIA and the State Department were frantic for the bug boffins to come up with a plausible story. The boffins obliged. Government scientist Robert Gallo had what he touted as invincible proof that the virus was transmitted from monkeys to humans at least 400 years ago. If you are a virologist, chopping millions of years down to a few centuries is pretty neat. You need only a few more strides to bring you up to the epidemic. Here are the steps. For four centuries HIV was doing its work in an isolated African population that doctors never reached. This secures the key dogma that the virus is an inexorable killer: it was killing, but no MD attended the isolate. The virus spread when maidens left the forests for Kinshasa, where the flesh trade was brisk. Bisexual Belgian businessmen collected the virus from these girls and gave it to male prostitutes in Haiti. A Canadian airline steward picked it up in Haiti and spread it to thousands of his contacts in San Francisco, New York, and Los Angeles. This incredible story was actually believed. It is reported with a straight face in AIDS literature, but with no explanation of why scientists think it plausible. The reason is that infections of their technicians by laboratory animals is a standing hazard. The story was told to me in all sincerity by a scientist in Myron Essex's lab shortly after he discovered that simian immunovirus (SIV) had about 70% of its genes in common with HIV; stir in a couple of lucky mutations, and, Presto! SIV became HIV. This was his Eureka. He was on a high; he had found the key that fits all locks.
Gallo's monkey story was meant to be the last word about origins, but the virus outsmarted him. HIV used his story to start a new cycle of stories. Here's one of them. Keep the monkey, discard the bites and the prostitutes. Add scientists in a Philadelphia lab circa 1957. The scientists are growing the poliomyelitis virus in a culture of African green monkey kidney cells. They need lots of polio virus because they are making polio vaccine. The bug boffins don't know that the kidneys of healthy green monkeys are the ancestral home of SIV. So SIV contaminates the vaccine unnoticed. The vaccine is ready for trial. Naturally it will be trialed in the Third World because that's where the greatest need is. A benevolent drug company provides 300, 000 doses of this latest pride of humanitarian science. It is administered by compassionate disease conquerors to children and young adults in Zaire, Rwanda and Uganda. But an invisible tragedy has struck. The vaccine is contaminated. SIV mutates to HIV. Add sex holidays decades later. Voilˆ the African AIDS Belt and an epidemic down the middle of the international fastlane. This story was told by Julian Cribb in the Weekend Australian in 1992. It won him the Walkley prize for investigative journalism. It's wild. Sixty million doses of possibly contaminated polio vaccine were administered over the years, yet it seeded only one AIDS epicentre. Still Julian won the prize because people are so keen to know where the virus came from. Cribb collected no bouquets from our AIDS scientists. They hate the story. They will not even reply to it. They hate it with the same fervour that the US State Department hates the Fort Detrick story. No doubt about it, HIV sends minds into spins. It has defeated AIDS science, which threw in the towel on the origin of the AIDS virus some years ago. The CDC's official epitaph was written by Donald P. Francis in 1989. He said: "From the moment AIDS was recognised as a strange and frightening phenomenon, speculation about its origin was irresistible. Growing just beneath the fear and speculation was the xenophobia that has often accompanied transcontinental propagation of epidemics". (Francis knows about Africa. He served humanity, on secondment from the CDC to the WHO team that staunched African haemorrhagic fever and smallpox.) He goes on to discuss theories of simian origin and mutation origin. He rejects both and tosses it in: "It is doubtful that the origins of the virus will ever be fully known". He means it will never be known at all. Don Francis, MD, DSc, is unduly modest. He knows the origin of the AIDS virus because he led the CDC virologists who postulated a viral cause of AIDS. That moment of creativity is what we today know with certainty about the origin of the virus. Indeed, it exhausts what we know about its origin. Let's have a look. Atlanta, May 1981. The CDC's hypersensitive sentinel system receives a message from its Los Angeles listening post. A cluster of five homosexual men with Pneumocystis pneumonia (PCP) and candidiasis (thrush), three of whom had abnormalities of cell-mediated immunity. The next CDC surveillance report (5 June) described the cluster and postulated a "cellular immune dysfunction related to a common exposure that predisposes individuals to opportunistic infections such as pneumonia and candidiasis". The definition will be used as a surveillance criterion by doctors all over the country. It is the first step in the definition of AIDS.
July. Doctors attending gay men are eagle-eyed. They report 26 cases of Kaposi's sarcoma (KS) accompanied by immune dysfunction. KS is a puzzle. Some doctors call it an inflammation; others a cancer. Among Europeans, it is rare, and prefers older men of Mediterranean origin. But in Africa it prefers children of both sexes, its prevalence is significant, and it kills like cancer. Now KS is going for gay men ranging from 26 to 51 years of age, in Los Angeles and New York. Very odd. August. The CDC switches the epidemic vigilance light to amber. An unusual incidence of disease associated with unexplained immunosuppression has been flagged. The concept of opportunistic infection, accompanied by a deficit of cell-mediated immunity, is bedded down as the revised surveillance definition of a disease called informally Gay Related Immune Deficiency (GRID). With it is bedded down the concept of an underlying common cause. Another foundation stone of AIDS science is set in place. September. The CDC switches the epidemic light to green. In Washington the National Cancer Institute (NCI) convened a KS workshop on the 15th. Fewer than 20 cases are available for study. Not many as populations go, but the Public Health Service lives by the motto that you should shut the door before the horse bolts. Medical scientists study the data. The common immunodeficiency factor is that most of the patients have significantly elevated CD8+ and significantly lower CD4+ T lymphocytes and lower ratios of CD4 to CD8 cells in peripheral blood. Thus, in only three months, the basic pathology-immunosuppression-had been identified and the probable mode of transmission by sexual contact had been established. Lowered counts of T4 helper cells but elevated counts of T8 suppressor cells. The workshop debates what, if anything, this means. The technology for counting T lymphocytes is new; there is little clinical experience to go on. The immune system is composed of a wide variety of differentiated cells that interact in a complex and patchily understood manner to provide protection against infectious diseases. While acknowledging that the distinction between T4 and T8 cells is oversimplified, the workshop fastened on it as a reasonably sensitive measure. So it is added to the surveillance definition of GRID. Another foundation stone of AIDS science had been laid. The workshop moved on to discuss the cause of this "strange and frightening phenomenon". Strange, because doctors had not encountered KS and PCP of this virulence. The PCP bacterium is carried by 95% of us. When on rare occasion it does act up, the sickness is mild. The KS story is similar. Since it was identified in 1872, doctors have debated whether KS is a cancer or an unusual inflammation. Since the cells that cause the condition have never been identified, no rational therapy has been devised. Some patients may live with KS for years. So the puzzle before the workshop was that two usually mild diseases were taking a new and aggressive course. The men in whom they appeared were apparently healthy at the time of onset. They worked, jogged, travelled. Suddenly they were ill. This aspect of the clinical signs was captured in the surveillance definition, "no known cause for diminished resistance". Here opinion divided.
The NCI thought that there were plenty of known causes of diminished resistance among these men. The cardiovascular patient can also look healthy shortly before a fatal coronary, but autopsy will show extensive vascular damage. So it was with the gay patients under study. They were calamities waiting to happen.
Such was the NCI case. Its central idea was that the cause of the novel syndrome was to be sought amidst this thicket of potential causes. There was no need to postulate a new infectious agent. This was to become known as the multi-factorial model of AIDS. The CDC felt confident of its case. It knew the clinical diseases of gay men thoroughly from the 7000-man cohort of its hepatitis study. Nitrites, they believed, could be dismissed. Nitrites had been in use for over a century. Viral overload was no use either. The hepatitis cohort answered to this description, but the novel KS and PCP symptoms had not been found among them. No, there had to be a new infectious agent, a point source of immune cell destruction. This is the single-virus, single-disease model that came to dominate AIDS science. The architect of the CDC position was Don Francis. He had taken his PhD at Harvard under the supervision of Myron Essex, who was a colleague of Robert Gallo. His thesis had been a study of feline leukaemia virus-a retrovirus. His study of 134 cats claimed that infection with the retrovirus caused immune suppression that led in turn to cancers and other diseases. Francis' thesis was a seminal study because it supported the concept of a viral cause of cancer. The Grail of a cancer virus had been sought since about 1970. It was indeed this Grail that launched the study of retroviruses by Duesberg, Essex, and Gallo. But the aching expectation of a breakthrough had been disappointed until 1980, when Gallo discovered a human leukaemia virus (HTLV-I). (Duesberg, we noticed, challenged this claim in 1987.) It was only weeks after the CDC received the initial notification of five cases in San Francisco that Don Francis, at age 39, experienced his first AIDS Eureka. His training as a viral epidemiologist made him impatient of the fuzzy causality of the multi-factorial model. Viral causality by contrast is clean and geometrical: one virus, one disease. His doctoral thesis had provided a distinctive viral causality. Now he had found the human clinical application that virologists had vainly sought. The syndrome looked ever so much like the leukaemia syndrome in his cats. In an inspired moment it was vouchsafed to him that the cause of GRID was a virus; specifically, a retrovirus. Gallo had just discovered human T-cell leukaemia virus. It made sense.
A second Eureka occurred in March 1982 after numerous discussions with Essex, Gallo, and his colleagues at the CDC. All the pieces came together. Francis presented a lecture to NCI scientists in which he outlined his doctoral work, the data on the hepatitis cohort, and IV drug users. He argued that the risk factors for GRID and hepatitis were virtually identical. "Combine these two diseases, feline leukaemia and hepatitis, and you have immune deficiency," he said. Feline leukaemia modelled the latency period, while hepatitis modelled the risk factor. The NCI was not convinced. Apart from the fact that a new virus was a speculation, Francis' sketchy model did not connect immunosuppression with the specific opportunistic infections, nor with their virulence. Why these diseases and why their virulence? How could a virus infect and kill not only T4 cells, but macrophages, B cells and other elements of the immune system? There was no answer. The indications today are that no answer will be forthcoming from the standard model. In May 1994, the National Institute of Drug Abuse (NIDA) held a conference on AIDS and drugs. Some of the outcomes of this conference were:
The NIDA conference reveals retrospectively the diagnostic blunder of the clause crucial to the definition of AIDS, "no known cause for diminished resistance". It now seems that the CDC engaged in the "unprincipled actions" that Dr Wecht detected in its handling of the swine flu epidemic. The nitrite evidence was ignored. The same story can also be told of the second AIDS diagnostic disease, PCP. This disease is developed by intravenous drug users, who inject opioids.
When AIDS was defined as a sexually transmissible disease, KS and PCP were significantly related to drug abuse. There was no good reason to postulate an infectious agent and every reason to investigate further the toxic effects of these drugs. At the Royal Perth Hospital, medical physicist Eleni Eleopulos had developed a model for these effects. When it came to the attention of AIDS scientists, they called her "an agent of the AIDS virus". Such is AIDS science.
"Hampered only by a lack of money."
"From the start, AIDS has been a show business disease".
"The world is dying of AIDS."
"Infotainment" is the buzzword for information packaged so that it attracts viewer interest. The evening news and popular science programs exemplify its adroit use. A concept driving infotainment was expressed long ago by H. L. Mencken, a publicist who entertained two generations with his sardonic wit. Mencken said that "what ails the truth is that it is mainly uncomfortable, and often dull". But infotainment need not be hedonic. Viewers have a hearty appetite for conflict, violence, personal threat. No news program is complete without them. Likewise with science. In the decades prior to the AIDS epidemic, science infotainment was replete with stories playing to the craving for calamity and enjoyment of the sense of personal threat. Fallout from nuclear testing, spring made silent by pesticides, overpopulation, nuclear winter, and the Greenhouse Effect are a few of the comprehensive doom scenarios that recruited large followings hungry for Apocalypse. This curious hankering for threat is probably a first cousin to entertainments that feature the thrills of risk-taking and narrow escapes, such as bungy jumping, highspeed skiing, rock and mountain climbing, horror movies, sporting mayhem and so on. Social psychologist Irvine Schiffler calls these thrills the "charisma of hoax". Just as there is a little larceny in every heart, so Schiffler thinks that each of us is an actor fantasing a role in calamity play. AIDS has been an unsurpassed show business disease because it dramatised cultural conflicts and rescued sexual expression from tedium by infusing it once again with danger. The amazing infotainment success of AIDS is best appreciated by considering how very dull the disease is when the gloss is removed. Unless you are a virus hunter or truth tracker, the real AIDS disease is unspectacular. Let's see just how everyday it is. The National Centre in HIV Epidemiology and Clinical Research provides the following data:
The rate of infection since the 1988 is estimated at 600 per year. The current infection rate is estimated at 3.5 new infections per 100,000 persons. 98% are male. Comparing AIDS as a cause of death with other causes, we find that in 1993 it was slightly more than the number of homicides, about a sixth the number of road fatalities, and about a fifth the number of suicides. It is not in the same league with cardiovascular disease (41,127 deaths, 1991) or cancer (31,284 deaths, 1991). This profile holds right through OECD countries, albeit at lower rates than Australia. Germany, its population 80 million, had 9000 AIDS cases as of 1993, while at the same date the UK, with 57 million, had 7000 AIDS cases. Even in the US, where the incidence of the disease is highest, the annual mortality from AIDS is just over half the mortality from hospital-acquired infections. Yet there is no public outcry about the lethal hospital epidemic. The virus is not a bushfire spreading through Australia or the Pacific region. The cumulative HIV+ diagnosis in the Western Pacific as of September 1993 is as follows:
In Australia, the incidence of HIV infection is established on the basis of just over 1 million tests per year. The number diagnosed as HIV+ is steadily declining; currently it is about 600 per year. These figures falsify three key premises of AIDS science. The first is the official line that AIDS is the most significant threat to the health of Australians. It is much less a threat than suicide. Another falsified premise is that the latency period of HIV is 10 years. If that were so, the annual number of new AIDS cases should be 0.10 x 17,568 = 1757. The actual number of new cases (about 350 per year) is indicative of a latency period of 50 years. This conundrum could be read another way. Assume that the 10-year latency period is correct. In that case the 75% who do not progress to AIDS in 10 years are false positives; that is, they test positive for HIV but do not carry the virus. For haemophiliacs, the false positive rate is even higher. Although 90% of this cohort test positive for HIV, only 0.06% progress to AIDS.
The impression that AIDS is the most significant threat to the health of Australians is due to the media appetite for calamity infotainment. Hyping is the accepted means of promoting research. Consider the current campaign to hype melanoma. The public have no interest in the private agendas of melanoma scientists. They do not care about the search for a predisposing melanoma gene or about a "vaccine" therapy for melanoma sufferers. These projects are costly (a single injection of the melanoma "vaccine" costs $100, 000) and interesting to scientists, whereas the prevention of melanoma is cheap and dull (just cover up). In order to pump up support for research, the public are fed scare stories. Consider the present push for melanoma research. We are told that the risk of getting melanoma doubled between 1980 and 1990. "That is really an absolute public health disaster," a breathless doctor exclaimed, "which is unmatched by any other malignancy and practically any other disease in Australia. If this rate continues, by the end of the 1990s we will have a melanoma incidence comparable with breast cancer."
That's an infomercial - a commercial presented as information. The creative challenge is to transform the uninteresting fact that people die into a gripping story that pumps up anxiety. The trick is to personalise the message: melanoma is coming after YOU-FAST. This anchors free-floating anxiety to a seemingly concrete, immediate threat (my sunburn). Melanoma isn't anyone's terminal illness of choice. Histrionics have become so much a part of the science trade that scientists speak openly about it. Luc Montagnier told an interviewer that "the media and the public think of us [scientists] as a cross between magicians and movie stars". Not for him to disappoint the fans. Steven Schneider, a Greenhouse promoter, was frank about the science infomercial: Scientists should consider stretching the truth to get some broad base support, to capture the public's imagination. That, of course, entails getting loads of media coverage. So we have to offer up scary scenarios, make simplified dramatic statements, and make little mention about any doubts we might have . . . each of us has to decide what the right balance is between being effective and being honest. There you have it. You can't say that you haven't been warned. Big Science aggressively markets its goods and services using proven promotional methods. Again Luc Montagnier: "I'm a gambler out for a big killing. Like a roulette player at the table, I'm addicted to getting results out of my laboratory . . . people are making major discoveries in other domains, but they receive none of the attention accorded to AIDS [scientists]".
AIDS has the pizzazz of a sex terrorist. The craving for risk, for danger as a stimulant, is apparent in the government's current Travel Safe campaign. Overseas travellers are handed an Australian National Council on AIDS glossy flier that announces "AIDS: A WORLD TRAVELLER". Its bland message reminds that the precautions urged domestically apply internationally. But travellers may also be handed other information that describes an alarming rise of HIV infection in Asia, especially Thailand and India. By the year 2000, 40% of the world's HIV infection will be in Asia; 15-22% of Thai sex workers are already HIV+; 30-60% of Indian sex workers are HIV+; 77% of the UK's heterosexually transmitted HIV was acquired overseas, and so on. The titillating message is clear. In the brothels of Bangkok, Calcutta and Manila, danger lurks for incautious Australian men. The effect of the story is heightened by not mentioning that the incidence of AIDS in Australia is far higher than in any Asian country. The entertainment version of this infotainment spectre was circulated through pubs in the early days of the epidemic. A joke tells about a businessman who took a Haitian beauty to bed. On waking in the morning, he found her missing; but written in lipstick on the mirror was the message: "Welcome to the World of AIDS". Let's look at the eagerness with which scientists have latched on to the craving for calamity. Professor R. V. Short, a Monash University reproductive biologist concerned about overpopulation, recently speculated that the AIDS epidemic might prove to be the population crash we had to have. Luc Montagnier stated in a Le Monde interview that, "we will kill AIDS or it will kill us". In recent number of the Scientific American, Gerard Piel stated that "at its present rate of transmission, HIV will infect 200 million people by 2010. The African share of the casualties might then approach 100 million. "(p. 92) . The tide of doom reached its highwater mark between 1985 and 1987. It was as if scientists were in competition to launch the most titillating picture of impending disaster. William Haseltine, Harvard AIDS scientist and collaborator with Robert Gallo, declared the epidemic to be "a major peril to our entire species. We haven't seen anything that we can't control except nuclear bombs, that's of this magnitude. We've got big problems". Another Harvard scientist, Myron Essex, added the exhortation that "we must act fast enough now so that we won't have 20-40 million Americans infected 5-10 years from now". The action he indicated was unstinting funding of AIDS research. Dr Matilda Krim, Director of the Sloan-Kettering Cancer Institute, a recipient of AIDS research dollars, likened AIDS to the 1918 influenza epidemic: "In ten years it could affect even a million people [in the US]. Worldwide, it can be 10 million, 100 million. God knows." Jerome Groopman, MD, yet another Harvard scientist, told a Discover Magazine reporter in 1986: "This is much, much worse than anything I would ever have envisioned. To think there are going to be a quarter of a million people in the US alone with the disease by ". (The actual 1991 figure was 46,986). Pulling out all the stops, Harvard celebrity Steven J. Gould told a New York Times reporter that AIDS might eventually reduce world population by 25%.
Why didn't credible health authorities calm the feeding frenzy? Because credible authorities instigated it. Consider this authoritative statement of the orthodoxy in Confronting AIDS (1986):
If the spread of the virus is not checked, the present epidemic could become a catastrophe. The Institute of Medicine-National Academy of Sciences Committee on a National Strategy for AIDS therefore proposes perhaps the most wide-ranging and intensive efforts ever made against an infectious disease . . . a massive, continuing campaign should begin immediately to increase awareness of the ways persons can protect themselves against infections.
The media loved it. Editors and television producers groomed their symbiotic relationship with experts. HIV mutated to the Media Transforming Virus. The more the media craved calamity, the more forthcoming scientists were. Big-name entertainers got into the act as well. Rock Hudson has been mentioned. Randy Shilts credits his celebrity with collaring free-floating anxiety and sympathy and directing it toward the disease. Benefit concerts and candlelight vigils were held. Comedians diverted audiences with AIDS jokes. Phil Donohue and Oprah Winfrey squeezed the story to the last tear. Oprah beguiled her viewers with a stupendous spectre: "Research studies now project that one in five heterosexuals could be dead from AIDS at the end of the next three years. That's by 1990. One in five. It is no longer just a gay disease. Believe me." They loved it. Oprah knows entertainment. America exported AIDs infotainment to Oz. Here is Glynns Bell in The Bulletin cover story of 17 March 1987.
He is a victim of the AIDS holocaust, a disease that is insidiously spreading through nearly every country in the world. Caused by a treacherous and slow-acting virus, it knows no national borders, no age or sex, no color, creed or race. It has already infiltrated Australia and lies silently poised to strike at the heart and health of the country.
After pausing to note that this evocative image is discordant with the actual number of AIDS cases, Bell sugar-coated dull facts with an exciting fantasy: "But the time bomb is ticking. Australia is counting down to the moment when AIDS stops being a localised firefight and, like herpes, become all-out warfare on the general population". Our newspapers were an obliging conduit from the World Health Organisation's epidemic hyping. WHO created the monster figures on African AIDS by multiplying reported AIDS cases and infection by 100. Journalists were delighted at the prospect of catastrophe. Thus the Sunday Express, in 1986, reported excitedly: "the deadly disease AIDS is now so out of control in black Africa that whole nations of people are doomed, leaving vast areas of now populated land devoid of a single living person within the next ten years". The justification for balancing truth with effectiveness was what WHO AIDS director Jonathan Mann, MD, called the "hidden factor". The hidden factor is the AIDS cases not counted because they haven't been reported. African doctors didn't know whether to laugh or cry at this showmanship. After asking "Where are all the graves?" Dr. Konotey-Ahulu went on to pose a second question: "Why do the world's media appear to have conspired with some scientists to become so gratuitously extravagant with the untruth?" Mann pontificated about Australia too. In 1987 he predicted 15, 000 AIDS cases by 1991. The actual figure turned out to be about 1000. Mann has since left WHO for an AIDS post at Harvard, but his legacy lives on. WHO recently projected 120 million HIV+ persons world-wide by the year 2000. This figure is obtained by pumping up Asian infection rates in the same way that African AIDS was hyped. Its most recent extravaganza is a claimed sevenfold increase in the number of Asian AIDS cases in just one year. Dr Gordon Stewart, an epidemiologist at the University of Glasgow, made a study of WHO predictions and actual outcomes. He found that they erred from ten to a hundredfold. At the same time he made his own predictions based on the standard computation for viral contagion. His predictions match the data on AIDS cases and suggest, as Peter Duesberg has also suggested, that HIV is an old virus that long since reached stability in human populations. He writes: "Nobody wants to look at the facts about the disease. It's the most extraordinary thing I've ever seen. I've sent countless letters to medical journals pointing out the epidemiological discrepancies and they simply ignore them . . . this whole heterosexual AIDS thing is a hoax."
Here are some of the facts supporting Stewart's case. In 1990-1, the number of confirmed female-to-male transmissions of HIV in New York was one. Since 1981, out of 30,943 cases of men with AIDS in New York, there are only 11 confirmed male-to-female transmissions. Africa is not dying of AIDS. In Uganda, of 1 million HIV+ persons, there are only 8000 AIDS cases; in Zaire there are 4636 cases for 3 million HIV+ persons. The cumulative total of AIDS cases for the African continent is 152,463 as of 1992. But we must bear in mind that African AIDS is clinically completely different from First World AIDS. The major categories are not PCP and KS, but traditional African illnesses such as tuberculosis, diarrhoea, and fever. There is no new mortality. A special definition of AIDS for Africa, the Bangui definition, greatly inflates the number of sicknesses counted as AIDS. The definition disassociates AIDS diagnosis from an HIV+ test. No wonder the continent seems to be swallowed by the epidemic.
I knew that if this retrovirus was the cause of AIDS . . . we
would need to convince the academic community as totally, as
widely, and as quickly as possible.
Scientists in the United States are forced to produce results,
which sometimes warps their sense of ethics.
The incredible Gallo incident will be a scar on the history of science. -- Don Francis
Gallo was certainly committing open and blatant scientific fraud. -- Joseph Sonnabend.
Australian AIDS science is a mosaic of research whose key elements stem from Robert C. Gallo, MD, Director of the Laboratory for Tumor Cell Biology, National Cancer Institute. He made world headlines in April 1984 as the discoverer of the "AIDS virus". The media rejoiced that the path to vaccine prevention of AIDS was open, and that a vaccine was likely be ready for trial in two to three years. His contribution did not end there. Dr Gallo devised a test for the presence of the virus and mastered the art of growing the virus in the large quantities needed for research. The media applauded that lives would be saved by protecting blood banks and that accurate epidemiological work could now be undertaken.
The worldwide conviction that HIV is the cause of AIDS dates from this moment. The event was packaged to produce optimal belief. Health Secretary Margaret Heckler greeted the press conference in the National Academy of Sciences auditorium packed with journalists and television crews. She declared that "today we add another miracle to the long honor roll of American medicine and science. Today's discovery represents the triumph of science over a dreaded disease." The discovery was a sorely needed answer to the chorus of critics who complained that the Reagan administration was doing too little to combat AIDS. Heckler dazzled critics with Gallo's American "miracle " and reminded the public of the gratitude it owed to medicine for triumphing over "dreaded disease". Then it was Dr Gallo's turn. He outlined the science of his virus, HTLV-III, emphasising that it had been shown to cause immunosuppression. He discussed his work's relationship to other research, particularly the work of the Pasteur Institute, and conceded that HTLV-III "may be" the same as the Institute's LAV virus.
The journalists reporting this event didn't notice the telltale signs that there was something fishy about the occasion. A obvious anomaly was that the announcement was made prior to publication of the articles presenting the evidence. A firm rule of scientific publication bans this practice. It hobbles the critical reception because scientists cannot comment on research that they haven't seen. Further, prepublication celebrity suborns scientists to see in the articles what the media have acclaimed. In this case the priming was unusually strong. By designating Gallo's findings the shining path to victory over AIDS, Secretary Heckler in effect laid down the orthodoxy governing AIDS research funding. But this in turn set limits to critical opinion. As it happened, there were quite a few scientists who gave Gallo's claims little credence. But their voices were not heard because journalists didn't search for critical comment; and in a very short time the orthodoxy was so entrenched that critical views seemed aberrant, even "loony".
The other visible anomaly was the Pasteur virus. On the day prior to the press conference, The New York Times published a frontpage story sourced to Dr James Mason, the CDC chief. He gave full credit to the Pasteur team for isolating the new retrovirus a year previously, for proving that it caused AIDS, and for developing immunoassay tests. On the surface, this was only a priority dispute that left a Cabinet member furious that a subordinate had rained on her picnic. But had reporters looked beneath the surface, they would have found significant misconduct stemming from rivalry but also doubts that either virus was pathogenic. Here are a few things that journalists missed at that crucial moment in the creation of AIDS science.
Relations between Gallo and the Pasteur Institute became hostile when the US Patent Office shut the door on the Institute's application for an immunoassay patent. The Institute made its initial application for a US patent in 1983, but it stalled. Gallo and the US Department of Health applied for a patent on the day of Heckler's announcement. It was granted almost at once. The French cried "Foul!" The public wrangling threatened to undermine the integrity of AIDS science. It was settled by an unprecedented agreement between heads of state (Reagan and Jacques Chirac), which gave a percentage of US royalties on test kits to the French. Although Gallo and Montagnier professed satisfaction with this outcome, the "kiss and make up" arrangement was part of the deal. In reality the French believed that they had scored only a small victory over "Robert Gallo's steamroller". The French actually believed that Gallo had no rightful propriety in the kits because his virus and his cell lines derived from their virus. In June 1994, the Director of the Pasteur Institute renewed the old objections. Dr Maxime Schwartz wrote to NIH Director Dr Harold Varmus that the agreement must be renegotiated because the previous agreement was based on "a cover-up of the true facts" and "deliberate fabrication" that gave a specious basis for American claims. "The French test kit was developed in the absence of any input from the American scientists," Schwartz told Varmus, "whereas there is no evidence that the American test could have been developed if the American scientists had not received the French virus." The Americans agreed to renegotiate, and after strenuous bargaining, the French demands were met. The reason probably was that Schwartz's letter coincided with a detailed report, in June 1994, by the Inspector-General of the US Department of Health and Human Services on the issues between Gallo and the Pasteur Institute. The report finds entirely in favour of the French. It states that Gallo obtained his patent by unlawfully concealing relevant information from the patent office attorney; that he admitted this unlawful act; that Pasteur scientists were first to discover the AIDS virus, to isolate it successfully from several AIDS patients, to describe it in a scientific article, and to use it to make a diagnostic blood test for antibodies to the AIDS virus. In short, miraculous American science has no entitlement at all to patent, or to patent royalties, or to credit for discovering the AIDS virus. Professor Frederick Richards, who headed a previous investigation of Gallo's misconduct, called for misconduct hearings to be reopened. He referred to a 1987 study of similarities between the Gallo and the Pasteur viruses that was concealed from his committee. The study, by the Los Alamos National Laboratory, asserted that Gallo's claim to independent discovery was a "double fraud". "The major purpose of this whole investigation", Richards stated "was to find out whether [Gallo's lab] stole the [Pasteur] virus. The answer is, they stole the virus. But [my committee] didn't know that at the time."
These are the latest of a long series of findings of misconduct in the Gallo laboratory. A previous investigation the Office of Research Integrity found that Gallo lied when he denied growing the French cell culture in his lab; that he "misrepresented and misled in favour of his own research findings or hypotheses"; that his lab management was "irresponsible", especially in his inability to document crucial steps of his experiments; that the photo of HTLV-III published with his path-breaking viral discovery was identical to the photo published by the Pasteur team a year earlier; that he reported in a Lancet article no adverse reactions to a trial vaccine when in fact both (African) subjects of the trial had died; that one of his staff and co-authors was convicted of a felony in connection with research, while his deputy laboratory chief was indicted. Nor is that the end of it. In June 1994 researchers challenged a Gallo study purporting to demonstrate the therapeutic value of a compound to treat KS. The study seemed methodogically suspect to the University of Arizona team. The statistical data seemed irregular and the photos published with the article did not seem right. So they undertook to replicate the findings. They even replicated an experimental error that they suspected might account for the dubious results. The attempt was unsuccessful. Their original suspicions were confirmed and they reported "serious systematic errors and omissions". The implication of their critical article was that Gallo's evidence of therapeutic benefit was at best unsound and at worst faked. The Arizona team submitted their findings to Science, the publisher of Gallo's paper. The journal's reviewers rejected the submission on the grounds it was "without serious merit and their experiments are an extraordinary waste of time and effort". They accordingly submitted to the Journal of the American Medical Association, which printed it together with an explanation of the article's rejection. The authors stated that the most troubling aspect of the contretemps "has been the reticence and obstacles encountered to public airing of our questions and the inability of the peer review process to correct itself once errors and inconsistencies were pointed out and bolstered by further experimentation". Another aspect of the case was conflict of interest among the co-authors of the Gallo article. One was a scientist on the staff of the pharmaceutical firm that manufactures the compound whose benefits were validated.
What does this expose of chicanery mean for the evaluation of the hypothesis that HIV is the cause of AIDS? In the first instance it shows once again that peer review, the supposed watchdog of science's quality and integrity, is heavily compromised by patronage loyalties. It is awesome that Gallo's plagiarism of the Pasteur micrograph of HIV could be published in the same journal without the plagiarism being detected by either the submission's reviewers or the journal editor. Some, of course, noticed the plagiarism straight away. In the ideal world that science is said to occupy, a letter pointing out this serious misconduct would have been sufficient for a retraction and the offender's dismissal. In the event, a costly and protracted high-level investigation was needed to establish this banal fact. Even then Gallo successfully defended himself by a diversionary tactic. The institutional rule that chiefs bear responsibility for the work of their subordinates was derailed by the simple device of blaming the lab photographer for a "stupid mistake". Gallo was not dismissed nor was his prestige visibly impaired.
This is a cameo of the science culture in which sleaze thrives. At every stage of the rise and progress of the HIV hypothesis toward dogma, its influence is apparent. The belief that HIV is the necessary and sufficient condition for AIDS depends on the credibility of Gallo's initial claims to this effect. The Pasteur team made this claim only tentatively. It was converted to a certainty by a promotional campaign conducted in the scientific press. The first shot was fired by the New Scientist, which published a story touting Gallo's findings in early April 1984. The story was based on science writer Martin Redfearn's interview with Gallo, who had provided him with prepublication copies of the Science articles. The New Scientist resisted all entreaties by Gallo's British colleagues that publication prior to the appearance of the Science articles was unethical. The CDC then moved quickly to spoil Gallo's triumph. It had allied itself with the Pasteur Institute in a power struggle with the National Cancer Institute. It planted The New York Times story through The Times' science writer, Dr Lawrence Altman, who had been a CDC scientist. The Gallo side struck back through its London ally, Nature, which published its review of Gallo's discovery only four days after the press conference. The article's title left no doubt: "Causation of AIDS Revealed". The subtitle stated that "the retrovirus responsible for AIDS has been identified by Gallo's group at NIH; Montagnier's group in Paris has helped". By assigning the Pasteur Institute a position to the rear of Gallo in the Nobel prize queue, the author reversed the implication of The New York Times article that Gallo did nothing more than to discover the Pasteur virus a second time. The Nature article claims that Gallo's publications provide "compelling evidence for a primary association of this virus with the disease". The author was Jerome Groopman, MD, one of Gallo's Harvard friends.
Thus, within a period of one month, four highly credible publications endorsed the idea that the cause of AIDS had been "revealed". To reveal the discovery, these publications had to conceal the fact that AIDS science had not advanced since Montagnier's modest claims a year earlier. The modest claims were inflated by the Pasteur side solely to counter Gallo's overreaching. The exercise is a classic case of ambition interacting with media celebrity to create convictions unsupported by evidence. The process is called "truth management" - the orchestration of prestige and authority to create, from the fallible surmises of a small group of friends, the appearance of incorrigible certainty girding the Earth. The basic trick is to capture the free-floating human sense of recognition (the Eureka feeling) and weld it to a specific set of beliefs. This effect automatically converts into certainty any belief to which it is attached. Generally speaking, truth management is merely one application of the arts of persuasion, promotion, and propaganda. It is not distinguished by the novelty of its devices, but in the boldness of their application to the one patch of modern culture that is supposed to be impervious to these arts. The details of the promotion of the viral theory show that managing truth is not an occasional lapse from rigid integrity. It is an indispensable tool, used daily by editors, grant bodies, policy-makers and the like, to shape the direction of otherwise "chaotic" science. To use an economic analogy, it replaces individualistic laissez-faire in discovery with "research management plans". Managed truth need not be any more delusional than the laissez-faire alternative. The mystique of authority and the charisma of Eureka are human constants not easily eliminated from social processes. Life would be the poorer without them. Research management schemes instituted in the wake of the Dawkins reform of the tertiary sector were a response to the chaos of many thousands of academics pursuing their individual or small-group convictions. Those schemes are similar to corporate or defence-sector research management, both of which have yielded a harvest of useable discoveries over long periods. But there is skilful and unskilful management. Looking back on AIDS research management, the error was to place all the funding eggs in the one basket of the HIV hypothesis. Circa 1983-4, there were congeries of supportable hypotheses about the cause of AIDS. It was appreciated that the uncertainty of hypotheses stemmed from basic ignorance about the immune system. This predicament suggested that as research advanced, hypotheses would rapidly change, at the very least in the direction of refinement. The prudent strategy, then, would have been to support research along different tracks, to provide insurance against placing all bets on one horse that might not finish. The opposite strategy was the one chosen. The choice was never explicitly evaluated. The evaluation process was pre-empted by a coterie who mystified AIDS research by engineering the conviction that HIV is the cause of AIDS. The downstream costs were predictable. When all funding for research intended to have an urgent public use is placed in one basket, the funding body is left empty-handed if the hypothesis is barren. Public commitment to a barren hypothesis introduces another prestige factor making it difficult to revise the hypothesis. That factor is the loss of face involved in admitting error. The need to keep up the appearance of the reliability of the scientific consensus thus locked AIDS science into a no-win predicament that becomes ever more intransigent as the futility of the hypothesis becomes ever more apparent.
Also if you don't get AIDS, you die.
Most people want salvation in six easy lessons. This is not possible. -- Darryl Reanney
When the first attempt at gene therapy was approved after years of debating its ethics, the medical team's PR section released a human-interest story about the team and the patient. The story was meant to disarm widespread suspicion of "gene doctors" by replacing stereotypes with living persons. The project was described, and the team chief commended its therapeutic promise by saying: "My ambition is to take the word 'incurable' out of the English language". This is yet another expression of the bizarre mingling of science with fantasy that RenŽ Dubos called "the mirage of health". Although the mortality of mortals is plain to see, doctors and the public act out elaborate "conquering disease" fantasies that mute and forestall fate. The charade is bizarre because it looks so much like perjury. On one level, doctors know that the therapeutic benefits of gene therapy lie well in the future, and that at best they will be enjoyed by a few, at great cost. As for eliminating genetic diseases, that could happen only in a world that we do not inhabit. But on another level, doctors and patients somehow believe the hopeful fantasy.
In a wise book, The Death of Forever, Darryl Reanney pondered the human predicament before death. Animals are exempt from it, he explains. Although they know fear, they do not experience death anxiety because they lack self-consciousness and foresight of the future. When the brain of Homo sapiens evolved to the point where individual finitude could be grasped, our kind struck a crisis of consciousness. Self-consciousness functions as the handle on the self-control necessary for tool-making and the wide latitude of action that we call "choice". In that sense the evolution of self-consciousness was the watershed for the species that would soon dominate the earth. But the individual's awareness of death undercut motivation by placing the futility of action on display. "Shit happens, then you die", as our depressed youth say. The solution to the crisis, Reanney thinks, was a manipulation of consciousness through mythopoetic psychotherapy. Early Man denied the finality of death by placing individuals in a cosmic setting that linked ancestors, the living, and coming generations in one great chain of eternal life. The mythopoetic masking of death served civilisation until scientific enlightenment precipitated a new crisis of consciousness. The mythopoetic vision was attacked as illusory. It was replaced by the mechanical world in which the finitude not only of individual consciousness, but of the Earth and the solar system, was affirmed in all its brute factuality. On this vision, the human species is a nervous mote disporting for an evolutionary millisecond prior to its certain extinction. In the meantime, we are diverted by the many recreations of the consumer society. Reanney's book is meant to show how the sense of immortality can be recovered by rethinking science and consciousness. While this is an important initiative, his meditations are of concern here for the light they shed on human suffering. He shows that its root is independent of sickness. The fundamental human suffering is knowledge of mortality. What to do? The culturally sanctioned solution, Reanney believes, is "the pursuit of happiness", or "pleasuring". That's the attractive road to salvation, but its effect is to deepen the malaise. The authentic road to salvation passes through the anguish of acceptance of death; one must die many times. Reanney writes: "Is this then the meaning of life? To struggle, to bleed in silence, to grow through suffering? Is comfort the necessary adversary of growth? . . . My answer has to be -yes"."
This is the wisdom of traditional religion and morality. Reanney reaffirms it even though he is a secularist with no brief for organised religion. When his book appeared in 1991, it occasioned disquiet among our intelligentsia because an important voice seemed to have turned reactionary. Reanney himself thought that he was facilitating the evolution of consciousness to a higher stage, but for that it was needful to identify the "missing centre" of the secular culture. What is the application of Reanney's wisdom to medicine? The mission of medicine has traditionally been to heal where possible, to comfort always, and above all to avoid harm. Until a few decades ago, the mission was adjunct to faith healing of many kinds. However, as the technical prowess of medicine increased, physicians promised more and their public insensibly cast them into the role of healing wounded souls. Psychiatry and counselling were testimony that the whole healing function could be "medicalised". Medicine assumes that human suffering is rooted in pathology. Reanney says that it is rooted in consciousness of self, whether well or sick. If that is so, medicine relieves pain but leaves human suffering untouched. Medicine is indeed so secondary to essential human suffering, as Reanney understands it, that its relevance to his theme did not even occur to him. Many doctors know from constant experience that sickness, pain, and suffering run on separate tracks that only occasionally converge. The infertile woman who suffers from child absence is healthy and experiences no pain, but the anguish may be acute. Despite this, our culture assigns to medicine the mission of relieving suffering. The role assignment springs from our belief in a technological fix for all "problems". The upshot is that the more we apply medicine to the relief of suffering, the more we increase it. That is why "health consumers" pose so great a challenge to "health delivery systems". They are in uproar because they believed the promise that medicine would relieve their suffering and then found that it didn't. Representative of this pandemonium are the words of Kimberly Bergalis. Days before she died, as she believed, of AIDS acquired from her dentist, she spoke her mind to Florida health authorities: "I blame Dr Acer [the dentist] and every single one of you bastards. Anyone who knew that Dr Acer was infected and had full blown AIDS and stood by not doing a damned thing about it"
This is a curse. It is directed at a practice that the Florida Board of Health adopted in good faith as a best practice standard. The internationally accepted norm is that since AIDS cannot be communicated by casual contact, there was no rational ground for compelling health workers with AIDS to withdraw from attending patients. In addition, there are strong human rights reasons for allowing them to continue. Kimberly also cursed the doctor who urged her to take AZT therapy although she had no AIDS symptoms. She fell ill with oral thrush and the symptoms of chemotherapy toxicity. Kimberly's curse expresses the dilemma of medicine. Her death was not due to lapses from best practice, but to adherence to best practice. Kimberly cursed because she had not resolved herself to mortality. Like most "health consumers", she trusted assurances that medicine relieves suffering. The shock of being killed first by her dentist and then by her doctor was not an outcome that trust had prepared her to accept. So she cursed. The institutional response to medical injuries is health rights commissions that receive and evaluate complaints. The remedy assumes that valid complaints stem mainly from unskilful or negligent service, and that they can be remedied by better training and increased institutional vigilance. Health ministers extol this remedy and no doubt it is an important safety valve. However, it does not meet the problem of suffering. Many complaints fall into the Bergalis category of an undesired outcome from standard practice-of unavoidable "side-effects" of the system. As for mispractice and malpractice, they too must have a statistical incidence regardless of improvement. But no one wants to be a statistic. Our present commitments to health care clients were greatly increased by the High Court in Rogers v Whitaker (1993). The patient, Mrs Whitaker, sued her physician because the outcome of an elective operation on her blind eye to restore its sight went wrong. Vision was not restored to the blind eye; in addition she lost vision in her sighted eye. The blinded Mrs Whitaker felt herself victimised. She had questioned the physician closely on possible adverse side-effects, but he advised that there was none. The facts as presented to the court were that Dr Rogers was aware of the possible outcome, but since it occurs in only 1 in 14, 000 operations, the risk was too low to warrant mentioning. Accepted practice was cited as supporting this decision. The court took another view. It ruled that best practice by professional standards does not necessarily express the best interest of the patient. Best practice may only "serve the interests or convenience of the members of the profession". As a result, physicians are now under an exacting "duty to inform" patients of all facts that a reasonable person may regard materially relevant to their decision to accept or refuse a treatment offered by the physician. Is this duty to inform honoured in AIDS medical practice?
While state and commonwealth AIDS publications acknowledge the requirement of informed consent and the right to refuse treatment, the approach to AIDS is largely paternalistic. The National HIV/AIDS Strategy booklet (1993), for example, discusses AIDS education, research, and counselling services without mentioning the toxic effects of the only therapy in use and without mentioning that scientific opinion is divided about whether AIDS is caused by a viral agent. The harmful effects of recreational drugs are not mentioned. There is no documentation of the informing process used in offering HIV+ patients AZT therapy. Hearsay suggests that considerable pressure is sometimes brought to bear. Patients are apparently made to feel that if they do not accept the therapy, they are letting the doctor down and may jeopardise their future care. This indeed is typical clinical experience regardless of illness, and it is the reason why gay health advocates have insisted on the right to refuse treatment. Public pronouncements of leading AIDS doctors are a guide to physician attitudes that patients are likely to encounter in the clinic. Some months ago press coverage of the challenge to the orthodoxy brought a flurry of public statements. Professor Ron Penny, Director of the Centre for Immunology at St Vincent's Hospital in Sydney, said flatly: "That issue is a load of rubbish. There is absolutely incontrovertible evidence that HIV is prerequisite for the development of AIDS. The question about HIV is not under debate except by the loony fringe." Professor John Dwyer agreed. The challengers, he stated, are a "no longer credible minority" who are "mischievous and egocentric". Professor John Mills, Director of the National Centre for HIV Virology Research, chided The Australian for "the worst form of irresponsible journalism" in publishing dissident views "without consulting" world experts like himself. Such comments confirm the allegations of "AIDS dissidents" that the orthodoxy they criticise is kept in countenance by aggressive intolerance. By branding critics "loony", critics are pathologised and placed beyond the pale of rational debate. This is an indirect way of saying that the tenets of AIDS science are sacrosanct. "Loony" also conveys the impression that the critics lack credentials, whereas many are scientists of high achievement while others are knowledgeable gay health activists. To acknowledge this fact, however, would be equivalent to acknowledging that AIDS science is in a state of flux and uncertainty. If this is the response to fellow scientists, what would be the chances of a patient who accepted at face value commonwealth and state pledges to "empower" patient participation in medical decision making? Would they be abused? If not, would there be any willingness to discuss with patients concerns they might have about particular aspects of AIDS science, such as the validity of their test result? It seems unlikely. The dogmatism of AIDS doctors effectively nullifies the pledge of patient participation in decisions affecting their own health. It also scuttles informed consent despite Rogers v Whitaker. AZT is strongly promoted as a therapy. But if patients were informed of the findings of the very medical scientists who give this endorsement, they would learn that in a trial of 308 Australian patients, 30% died within 1-1.5 years of AZT treatment; one or more new AIDS diseases appeared in 56% of patients within a year; that side effects include leucopenia (80%), anaemia (20%), and nausea (30%). Let the reader put the informed consent test laid down in Rogers v Whitaker: if I were HIV+ but had no symptoms, would I consider such information material to my decision to accept or decline the therapy? If the answer is "yes", another question follows: why aren't HIV+ patients given information about the toxic effects of AZT, the insecure clinical basis of its prescription, and the unreliability of the AIDS test?
The experience of AIDS medicine tends to confirm that the origin of human suffering is anxiety of death. Its vision of calamity was not confected from the morbid anxieties of those sick to death, nor from the depths of extreme pain, but sprang from the minds of well medical scientists. The vision of mass death expresses, I have argued, the trauma of a profession that has assumed responsibilities beyond its capacity to deliver. The inflation of a small number of sick persons into an imaginary gigantic pool of suffering, and the urgency of "saving lives" from an unknown virus, started an odyssey that courses through fraud in Dr Gallo's laboratory, the helplessness of accountability systems to detect and penalise the fraud, and the haunting curse of Kimberly Bergalis. Our health system is fortunately not in the advanced state of crisis afflicting America. But we seem to be doing our best to catch up. AIDS science and AIDS culture are American imports. Our philosophy of health services does not differ greatly from American philosophy. We believe that health care administers essentially to human suffering whereas the alternative view is that suffering springs from the nature of self-consciousness. Suffering, like death, must according to Reanney and the Zen master be lived through. There is no salvation in six easy lessons. The choice lies in how suffering is lived through. Presently we travel down the fork in the road that leads to Kimberly's curse. There are many Kimberlys among us. But we can retrace our steps, scale down our expectations of medicine, and travel the alternative path on which suffering is transfigured by its meaning. In the case of AIDS, retracing the steps places the burden of suffering on the medical profession's recognition that a phantom epidemic symbolises its misconception of the aims of medicine.
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Acquired Immune Deficiency Syndrome (AIDS). A disorder of immunity characterised by abnormalities of immunoregulation and opportunistic infections.
Antibody. A component of the immune system produced in response to exposure to antigens. Antibodies help eliminate infectious microorganisms in the body.
Antigens. A foreign molecule that stimulates the production of antibodies.
AZT (zidovudine). A chemotherapy drug used to slow the progression of AIDS diseases by preventing viral replication. Its side-effects include leucopenia, anaemia, and nausea. Like all chemotherapy drugs, AZT is immunosuppressive. Cecil 1095
Cell-mediated immunity. A defence mechanism involving the coordinated activity of two subpopulations of T lymphocytes, helper T4 cells and killer T8 cells. Helper T cells produce substances that stimulate and regulate other cells of the immune system.
Cofactor. A factor other than the basic causative agent of a disease that increases the likelihood of the disease developing.
Cytomegalovirus (CMV). A virus belonging to the herpesvirus group, commonly associated with infections of patients who have received medical treatment involving immune suppression. In AIDS patients, CMV may produce pneumonia and inflammation in various organs.
Cytopathic. Disease-induced change to cells.
ELISA. Enzyme-linked immunosorbent assay, a test used to detect antibodies against HIV in blood samples.
Encephalopathy. Any degenerative disease of the brain. It is a major AIDS-defining illness although it is not necessarily caused by an infectious agent.
Gay men. A subgroup of homosexual men who identify themselves with the gay community sharing a common identity.
Haemophilia. A rare, hereditary bleeding disorder of males due to deficiency of Factor VIII blood-clotting proteins. Health. The state of physical and mental well-being, characterised by the absence of disease and infirmity.
Human Immunodeficiency Virus (HIV). A nine kilobyte retrovirus of the lentivirus family, believed to be cytopathic of T and B lymphocytes and haematopoietic stem cells, and associated with two types of cancer, encephalopathy, and 26 opportunistic infections.
Human T-cell lymphotropic virus type III (HLTV-III). The name given in 1984 to isolates of the supposed AIDS-related retrovirus, called "HIV" since 1986. The isolate was not, as originally believed, of the HLTV family.
HHV-6. A ubiquitous virus of the herpes family proposed as a cofactor with HIV in the aetiology of AIDS.
Immune system. A group of cells that confer protection against infectious agents. The cells are B and T lymphocytes and monocyte-macrophages. The products of these cells are antibodies and lymphokines. Much of the damage caused by a wide range of diseases is due to abnormal immune system responses.
Immunosuppression. The diminution of immune response.
Kaposi's sarcoma. An inflammation or a cancer of the lymphatic vessel walls, which usually appears as a violet or brownish skin blotch. It is a major AIDS-defining disease but it is not an infection.
LAV. Lymphadenopathy-associated virus. The name given in 1983 to the first isolate of the supposed AIDS-related virus, called "HIV" since 1986.
Lentiviruses. A subfamily of retroviruses that includes visna viruses of sheep and other animal viruses.
Lifestyle. The manners, habits, and consumption practices associated with specific social roles or with personal definitions of self.
Lymphadenopathy. Generalised swollen glands in the absence of an illness known to cause such symptoms.
Lymphocytes. A type of white cells found in most of the body's tissues. They stimulate production of antibodies against infection.
Mycoplasma fermentans. A derivative of the bacterium Mycobacterium avium-intracellulare, rarely found in humans prior to AIDS. It has been proposed as a cofactor in immune suppression.
Nitrites ("poppers"). A family of relaxant drugs heavily used by gay men after 1960. Nitrites are oxidising agents that cause cellular anoxia and impair cell-mediated immune response. They are also mitogenic, mutagenic and carcinogenic, and may interact with common substances, such as antihistamines, to produce toxic N-nitroso compounds.
Opportunistic infection. An infection caused by a microorganism that rarely induces disease in persons whose immune systems are normal.
Oxidative stress. A disturbance of the thiol cycle of cell metabolism leading to cell necrosis. Stress is caused by oxidising agents, such as recreational drugs, AZT, semen, antibiotics, and radiation therapy. Oxidative stress has been proposed as the mechanism of the immune system damage associated with AIDS.
Provirus. A copy of the genetic information of a retrovirus that is integrated into the DNA of an infected cell. Copies of the provirus are passed on to each of the infected cell's daughter cells.
Retrovirus. A family of viruses that contain the genetic material RNA and have the capacity to copy this RNA into the DNA of a cell. This process is called "reverse transcription".
Reverse transcriptase. An enzyme produced by retroviruses that allows them to produce a DNA copy of their RNA.
Safer sex. Sexual behaviour that prevents the transmission of the HIV virus between partners. It is usually specified as preventing the exchange of blood, semen, and vaginal secretions. Seroconversion. The initial development of antibodies specific to an antigen. For HIV, seroconversion is believed to occur six to eight weeks after infection.
Seropositive or HIV+. Having antibodies to HIV in the blood. In diseases other than AIDS, antibody response is usually interpreted to mean that the infectious agent has been immobilised.
Syndrome. A pattern of symptoms and signs, appearing one-by-one or simultaneously, that together characterise a particular disease.
Syphilis. A venereal disease caused by the spirochete Treponema pallidum and transmitted by sexual contact or in utero. Syphilis causes lesions to the skin and organs and may be latent for long periods.
T lymphocytes (T cells). Cells of the immune system that originate in the thymus gland. They are found in the blood, lymph, and lymphoid organs.
T4 cells. Helper cells of the immune system that stimulate immune response. Also called CD4 lymphocytes. T8 (CD8) cells "turn off" T4 cell activity.
Virus. A non-living fragment of genes that lacks motility and metabolism and depends on the DNA of host cells for replication. Bacteria, plants, and animals are hosts to viruses. Virus are very small, having a mass of about one five hundred millionth of a T cell.
Western Blot. A test that identifies antibodies against specific protein molecules. Commonly used to confirm tests on samples found to be reactive to the ELISA test.