- The AIDS Epidemic edited by Kevin Cahill
Hutchinson, 175 pp, £3.95, January 1984, ISBN 0 09 154921 3
- AIDS: Your Questions Answered by Richard Fisher
Gay Men’s Press, 126 pp, £1.95, April 1984, ISBN 0 907040 29 2
- Fighting for Our Lives by Kit Mouat
Heretic Books, 160 pp, £2.50, April 1984, ISBN 0 946097 14 3
Flu has just hit London, and you are not feeling very well. You have swollen glands and a cough, perhaps with a sore throat; you are running a temperature, tend to sweat in bed at night, and your bowels are a bit upset. To most of us an attack of this kind is unpleasant and inconvenient, little more than that. For others it brings doubts that are a plague worse than the disease, fears that cause rifts between themselves and their loved ones, and a growing realisation that they are going to be cast off by mankind, possibly for good. These men – for it is principally men that are concerned – are members of the metropolitan homosexual communities – in London, Paris and, above all, New York, San Francisco and Los Angeles. Over the last five years their lives have been overshadowed by the spread of a mysterious, entirely fatal disease which has, ironically, become known as AIDS.
The acquired immune deficiency syndrome, to give it its full name, first surfaced in the West in 1979. Reports of rare parasitic infections, of cancers till then hardly more than descriptions in the literature, began to appear. The Centre for Disease Control (CDC) in Atlanta began to receive unusual numbers of requests for pentamidine, a drug used to treat Pneumocystis carinii pneumonia; the condition is hardly known in adults outside famine-struck refugee camps. This and at least twenty other opportunistic infections are now known to be accompaniments of AIDS, passengers of the underlying disease driven by some unknown agent. The syndrome was recognised in 1981. Since then it has afflicted several thousand people. The first signs are hard to distinguish from many less serious viral infections; there is no quick way of reassuring a patient who suspects he may have the disease. (The BMJ recently carried advice to doctors on a whole new problem – the treatment of anxiety and depression among homosexuals who fear they may have AIDS.) Time alone can tell: but if you have the disease, usable life will be short, and at present there is no cure.
Infectious diseases have lost much of their power to terrify. Until this century they made death a familiar part of life; for young as well as old life was less predictable, and perhaps – for that reason if for no other – more to be prized. The natural love of man for the comfort and company of his kind was edged with the realisation that it was also from his fellow mortals that he risked mortality. Leprosy, pox, plague: the image of these strange pestilences supplied priests and holy men with their texts, and artists with breeding metaphors of corruption, despair, pity – of the whole brief urgency of life. Waiting as most of us do now for a death which comes from within, a slow death, an aged death, a death which is incommunicable and for the most part invisible, we are more solitary than our ancestors – both in our enjoyment of life, and in the manner in which we are condemned to relinquish our hold on it.
For this reason, any outbreak of serious infectious disease alters the way in which we view ourselves and our lives. Such an event is mercifully rare, but it may not always be so. People sometimes talk as though the advances of medicine were permanent. They are no more permanent than the advances of an empire over hostile peoples. New organisms, causing new diseases, are continually evolving; and those which cause the familiar diseases learn how to evade such defences as we already have. It is well-known that the flu epidemic of 1918-19 killed more people than died in the Great War. What is perhaps not so well known is that the same virus was isolated in New Jersey in 1977, where it killed a soldier in the US Army. A painful decision had to be made: 45 million people were inoculated, the vaccine condemning several hundred to die of an ascending paralysis, resulting from a neuropathy known as Guillain-Barré syndrome. Early-warning stations are on constant alert to prevent the recurrence of globally fatal diseases, but even if we succeed in preventing them, we do so at a cost.
Drugs, too, go out of date very fast, not because they are being constantly improved, but because they soon cease to be effective. Bacteria learn with a speed which is awe-inspiring how to outwit the defences summoned against them. Put two cultures of different types of bacteria together, one of which is resistant to one drug and the other to another, and in a matter of minutes you will be breeding bacteria which are resistant to both. Some bacteria transfer information on drug resistance during sex. This performance, which has to be seen to be believed, involves the male, which is shaggier than the female, getting the female on the end of a long rod, known as the sex pilus, and transferring a chunk of DNA which contains information both on drug resistance and how to make a sex pilus: ‘she’ now becomes a ‘he’, and passes the news on to her next partner. Even viruses which prey on bacteria may inadvertently take up the plasmid (the chunk of DNA), and instead of injecting their own genes into the next victim, confer on it the ability to resist certain antibiotics. Staphylococcus aureus, a common hospital bacterium, was nearly 40 per cent resistant to penicillin within a year or eighteen months of the drug’s introduction, and 60 per cent resistant by the following year; penicillin nowadays is virtually useless against it.
Sometimes such developments have interesting social histories. In 1976 the first penicillin-resistant gonococcus (the causative agent in gonorrhoea) was isolated at the same moment in two widely distant places – in Liverpool and in the Philippines. The plasmid in each case was different, and the existence of a connection between the ports is speculative. But in the Philippines the sequence of events tells a revealing story. Gonorrhoea is endemic in the US Navy, which has a large base in the Philippines. As a result the local whores take prophylactic doses of penicillin to guard against the disease. Unfortunately the pharmacists who sell them the capsules have discovered that it is more profitable to shake out a good whack of the penicillin and substitute chalk, so that the prostitutes who buy from them are taking chronic low doses of penicillin. Resistance was soon induced: first in Escherichia coli, a bacterium which naturally lives in large numbers in the bowel. The information was transferred from there to Haemophilus influenzae, which lives in the throat. It then took but a single step for the gonococcus, living where it does, to learn how it, too, could resist penicillin. Since then the treatment of gonorrhoea has become progressively more difficult.
There has been much speculation about the causes of the new disease of AIDS. In the last month or so, and hence since these books were sent to press, there have been reports that a virus has been isolated: but bacteria, parasites and fungi have all been seen as possible causes, and certainly all may be associated with the disease once it is established. Equally, where it has come from is a mystery, and until the cause is known, is likely to remain so. One theory is that it is endemic in equatorial Africa, and was brought to the US from there via Haiti, possibly by mercenaries. Haitians deny this, and claim that it was brought to them by New York homosexuals on holiday. Perhaps the disease has been around since antiquity; perhaps it is caused by a mutation of some familiar virus; perhaps it is the result of a combination of factors peculiarly brought together by modern urban life. Which theory you favour may depend on many factors, not all of them strictly scientific. Whatever the answer, it will be the longer arising for the social and political quagmire in which any investigation soon becomes bogged down.
The reason for this is the nature of those who are most at risk: homosexuals, Haitians, haemophiliacs, intravenous drug-users and prisoners. Many of these felt themselves to be social outcasts before the advent of AIDS. Now they feel doubly so – often ousted from jobs, even from their homes, treated not only as lepers but as lepers who have somehow brought their affliction on themselves (but then so were lepers). ‘The poor homosexuals’, wrote Patrick Buchanan, a columnist in the New York Post, ‘they have declared war upon nature, and now nature is exacting an awful retribution.’ Sickened by this sort of mumbo-jumbo, homosexuals have tended to be suspicious of the establishment, which naturally includes the medical establishment. The Haitian authorities, fearing an additional stigma, have co-operated very little in attempts to investigate the nature and extent of AIDS in Haiti itself, where it appears now to be widespread. The Haitian community in America was already upset by publications documenting a high incidence of tuberculosis and syphilis among Haitians when the AIDS storm broke.
One of the many questions that remain unanswered is how the Haitians fit into the pattern of transmission. Of the 71 who had contracted AIDS by March 1983, only two are classed as intravenous drug-users, and five as homosexuals. As far as we know, the transmission of AIDS requires the exposure of damaged mucosal surfaces to the body fluids, especially the blood or semen, of the carrier. For this and for other reasons, normal intercourse between men and women, though a possible mode of transmission, is less dangerous than anal intercourse. The high incidence among heterosexual Haitians is puzzling, though it is possible that there are cultural or religious inhibitions against admitting to certain practices among them. Indeed in this case it is possible that the doctor and the patient literally do not understand one another’s language.
Treatment averages about sixty thousand dollars per case. The cost of treatment of the largely poor and uninsured victims of AIDS has become an appalling problem, not only for the sufferers, but for New York City, which has had thousands of AIDS patients on its hands. There are about two hundred times more cases pro rata in the USA than outside; about half of these are in New York, and half of those in New York are from Manhattan. It has crossed the mind of more than one of the learned contributors to The AIDS Epidemic, an account of the disease by 13 leading American experts on AIDS, that this financial burden has been a factor in promoting urgent research into what was at first dubbed the ‘gay disease’, and in some quarters treated as little more than a curiosity. They contrast – to my thinking, a little cynically – the rapid reaction to Legionnaires’ disease when, in 1976, it struck down veterans attending a convention of the American Legion. The natural competitiveness of the scientific community makes apathy unprofitable – there are other reasons why AIDS has been a tough nut to crack.
The range of the disease is now no longer restricted to any one group, or even to the male sex. Women can get it through intercourse; if they are intravenous drug-users they are definitely at risk. By March 1983, 26 children under five years of age had contracted AIDS, of whom ten had already died. One child died after a transfusion of platelets from a man who was subsequently found to have AIDS. In general, the youth of the victims is a remarkable reversal of expectation – 92 per cent are in their forties or younger. Moreover one of the common accompaniments to AIDS is a cancer known as Kaposi’s sarcoma, which until recently was an extremely rare condition of the elderly.
This time last year, new cases of AIDS were being reported at about five a day, and the rate was doubling every six months. If this had continued, there would have been twenty thousand AIDS patients in the US alone by 1985. The rate now no longer appears to be doubling, but the numbers still continue to climb alarmingly.
The nature of the attack mounted by the disease is ingenious. Very broadly, there are two arms to the immune response by which any disease is combated. One (the B cell response) concerns the production of antibodies; the other (the T cell response) is mediated principally by cellular attack on infected cells. Additionally, some categories of T cell are responsible for regulating both arms of the response: they are known as T-helper and T-suppressor cells. In AIDS the number of T-helper cells, which are vital for the performance of the whole immune system, is drastically reduced. Oddly, the number of T-suppressor cells is abnormally high, not just in AIDS patients, but in almost all practising homosexuals (one theory is that these cells help suppress immune responses to partners’ semen). The resulting imbalance, with its implications for both arms of the immune response, lays the body open to a host of conditions to which the normal healthy subject is resistant, including viruses, bacteria, fungal agents and parasites which may attack virtually any part of the body. Additionally, the function of macrophages, which help kill and ingest invasive organisms, may be impaired, along with the production of some types of interferon, which helps resist viral assault.
The result of the superinfections, even if they can be controlled with drugs, is to compound a weight loss which is severely weakening; one doctor describes the patient with AIDS as looking like a prisoner in a concentration camp. This feebleness in turn exposes him to quiescent infections acquired outside the hospital, to infections from his indigenous flora, and to hospital-based organisms, notoriously resistant to antibiotics. Of those who were diagnosed in 1979 and 1980, more than 90 per cent are now dead.
Doctors are beset with difficulties which are both personal and professional. Because of the depressed immunological response, diagnosis of supervening infections is abnormally difficult: many laboratory tests depend on reactions with which AIDS interferes. The disease itself has an incubation period of about twelve months, during which the patient is presumably infectious for those handling samples of body fluids without due care, including nurses and laboratory technicians. Symptoms are not specific enough to be diagnostic. Until the mode of transmission is certain, the position of doctors and nurses in constant contact with AIDS patients requires both dedication and a scrupulous observation of precautions against infection. An impressive, almost chilling list of these precautions is drawn up in an article in The AIDS Epidemic. Will they be observed? One recent American study revealed that physicians in two intensive care units washed their hands only 28 per cent of the time after touching patients. And when the patients die, morticians may refuse to handle their corpses.
Transmission of an infectious disease among homosexuals is made easier by the way in which many of them live. AIDS: Your Questions Answered, a Gay Men’s Press publication designed for a homosexual readership, is in this respect a revelation. Apparently, a report made in 1983 states that the average number of sexual partners per annum amongst AIDS patients was 62, against 25 per annum in healthy homosexual controls. Half of all male homosexuals with Kaposi’s sarcoma (KS) had ten or more different partners a month, an average of one new partner every three days; and one KS patient had anal intercourse with a par of 90 men per month, a staggering average of three new partners every day. How much of this activity took place after acquiring AIDS is in the nature of things unknowable. What is perhaps more disturbing is that the knowledge that one has AIDS may not lead to restraint: on the contrary, some AIDS patients, according to Richard Fisher, have described becoming reckless, through despair and a sense that there was now little to lose. ‘They throw themselves into sex,’ as he puts it, ‘in every bar, bath and cottage.’
The role of these bath-houses has been crucial in the spread of the disease. Commercialised homosexual centres in the large coastal cities of America have developed establishments where many men can have sexual commerce anonymously with many others – a perfect ‘amplifier’ for sexually-transmitted diseases. The voluntary closure of some of these bath-houses and attempts to discourage large-scale promiscuity have apparently met with great resistance. Fisher quotes one contributor to the New York Review of Books as seeing a ‘sexual brotherhood of promiscuity as the foundation of our identity’. Another writes: ‘I feel that what we are being advised to do involves all of the things I became gay to get away from ... So we have a disease for which supposedly the cure is to go back to all the styles that were preached at us in the first place. It will take a lot more evidence before I’m about to do that.’ But probably evidence is irrelevant: the issue here felt to be at stake is apparently important enough to allow the risking of lives, including one’s own.
Promiscuity is perhaps a matter for the individual, who knows he is taking a risk. Blood donations are another matter. Some homosexuals and Haitians have reacted angrily to the suggestion that they should refrain for the time being from donating blood, seeing this as one more form of discrimination. Since the only way, apart from sexual activity, through which AIDS is known to be transmissible is through blood, one man’s insistence on a lot more evidence could have fatal consequences for a number of people. Then there is the problem of haemophiliacs, which, of all groups, is the one most at risk. The majority, who are dependent on supplies of factor VIII, a blood component which they lack, are in a vulnerable position, since one batch of factor VIII may be concentrated from as many as twenty thousand donors. Britain may soon be self-sufficient in factor VIII: a definite advance, since the incidence of AIDS in Britain is relatively low (31 cases reported by the beginning of this year).
The fact, welcome or unwelcome, appears to be that chastity among homosexuals is on the increase. One of the pay-offs is a decline in the incidence of all sexually-transmitted diseases in such homosexual communities, while the general incidence continues to rise sharply. Yet Fisher writes: ‘if a new agent can be found, then a new drug should be forthcoming to cure AIDS, and we can all go back to the bath-houses with easy minds.’ This is very clearly to underestimate the nature of sexually-transmitted diseases and to overestimate the value of therapeutic drugs in the long term. With or without AIDS, we may be about to see an enforced change of sexual mores in society at large.
My guess is that Fisher was just trying to be friendly. ‘From the standpoint of sexual practices, you stand no risk whatsoever with one healthy lover. What is more, I practise what I preach.’ This serious, confessional tone is not untypical of the book as a whole. It is a very sensible, level-headed and informative account of the disease, its risks, how to avoid it, and how to avoid the prejudices which are bred by ignorance. It is admirably clear and to the point. Yet the author’s tone is somehow old-fashioned, and in a rather English way, considering his American origin. For example, he refers to drink-induced impotence as ‘brewer’s droop’, a phrase which has an odd public-school flavour about it. He imagines sex without AIDS: ‘Rubbing your penis against his smooth body can be damned exciting.’ Some earnest, almost paternal – and to the average ‘straight’ reader rather strange – advice is given about the relations between lovers. If your friend has AIDS don’t give him up: ‘he might enjoy watching you perform with another man. Be inventive. Love’s mansion has many richly furnished rooms.’ It occurred to me that the combination in this book of extremely blunt language with these somewhat precious touches might be expressive of more than just the author’s personality. An odd artificiality in relations between lovers is presupposed throughout – perhaps it’s inevitable if you average 25 partners a year. I thought it striking that both Fisher himself and one writer he quotes felt it necessary to reestablish the meaning of the word ‘lover’ as rooted in ‘love’ – as though uncovering some unnoticed etymological felicity.
AIDS: Your Questions Answered is designed for those who are most at risk from the disease, and it derives some of its force from this fact: it offers reliable information and practical advice. The AIDS Epidemic stems from a conference held in New York last year. Its contributors view their subject more widely, more variously, and in more detail. It is the more stimulating book for those who are interested in the possible mechanisms of the disease and its clinical manifestations: it also gives a much fuller picture of the social and political issues that have become part of the story, and of the whole fascinating business of the evolution of our understanding. One of the contributors retired from his post as director of the CDC to devote himself entirely to AIDS: a proper seriousness, almost asceticism touches everything, from the profession’s view of its own failings to the clarity with which the material is presented. It seems appropriate that these essays by experts should be flanked by a prayer from Cardinal Cooke, a welcome from Mayor Koch, and a statement of intent from US Representative Weiss. The disease has become, in a sense, an American disease: one which has a peculiarly ambiguous relationship with the American way of life.
The AIDS phenomenon has an understandable intensity. If, as seems likely, a treatment is found within the next two years, AIDS will lose much of its mystery, and much of its power over the popular imagination. Meanwhile people will go on dying as before, most of them from cancer and heart disease, scourges beside which AIDS seems almost unimportant. Research into cancer has spanned generations; the variety of forms and causes is enough to provoke despair. Fighting for our Lives contains an account by ten cancer patients of their experiences with the medical profession, and of their attempts to help one another live without it. For Kit Mouat, one senses that unconventional medicine is part of a way of life which brings its own baggage of social and political conventions with it. This has a sort of logic, and may even be a good thing, but it is offputting if you want to share her open-mindedness on the medical issues without being co-opted into the feminist Left. Still, she offers a good brief practical guide to alternative therapies, interspersed with some unusual information. ‘Why, for instance, do sharks so rarely develop cancer, and what is it about basking-shark cartilage extract that blocks the growth of tumours?’ There is poetry in that.
The value of the book, however, lies in the ten patients’ stories, told in their own words. Every medical practitioner should read them. They tell of doctors, well-intentioned and unquestionably skilful, dealing inhumanly with human problems, their minds tightly closed to their patients’ doubts and fears. The terrible nature of the weapons they wield perhaps keeps their minds closed the more tightly: for if other, less brutal treatments may succeed, how is all this battering and suffering to be excused? For them, as for their patients, the enemy is time. There is no time for investigating alternatives, little enough for thinking about the patient: the tumour is all that is in view. The fact that there is no treatment for AIDS focuses our minds on the individual’s suffering: once the cure arrives, the disease may come to be all.