Sunday, 9 January 2011

And The Band Played On, Randy Shilts

The plague hit San Francisco unexpectedly, silently spread by deadly microbes.  It was infectious and lethal, but the routes of transmission were not properly understood. Government agencies squabbled amongst themselves as they made fitful attempt to get to grips with the crisis.  Some people just didn't want to know.  The problem disproportionately affected a stigmatised minority group, and it proved difficult to get effective warnings out.  For some people, raising the alarm was simply bad for business.

Such was the progress of the San Francisco bubonic plague outbreak of 1900-09.  Shilts cannot resist drawing the parallel between that now forgotten episode and the AIDS crisis.  It is one of the innumerable signs of erudition and research in this seminal modern classic.  And The Band Played On was something of a sensation in its time, becoming both a critical and a commercial success, and spinning off an HBO film featuring Ian McKellen, Richard Gere and Phil Collins.  Originally published in 1987, it was reissued in 2007, and its skilfully crafted prose has stood the test of time.  It is fantastically detailed and well-informed, yet readable.  Its lessons are as relevant today as they were a quarter of a century ago.


I

The narrative starts with the start of the appearance of AIDS in the West in the late 1970s.  The early centres of the epidemic in the United States were New York and California.  San Francisco had been a magnet for gay men since the late 1960s, and they formed a significant slice of the local community.  Many gay San Franciscans were politically active.  Others were public-spirited in a more apolitical way: many of them, for example, were blood donors.  Similarly, New York had a large and active gay population, though NYC was a somewhat less hospitable and more closeted place than the city on the bay.

By late 1980 and early 1981, it was starting to become apparent that something new and disturbing was happening.  People were starting to fall ill with lethal forms of rare diseases, including pneumocystis pneumonia and a rare form of skin cancer called Kaposi's sarcoma.  The most visible of the first victims were gay men, though it would later become apparent that the syndrome was affecting other groups too.  By April 1981, the US government had been alerted to what was going on by an upsurge in requests for Pentamidine, a rare drug used to treat pneumocystis.  The syndrome was mentioned in the gay press in May 1981, and the following month it was reported in an article in a widely circulated weekly report published by the federal Centers for Disease Control, from where it found its way into the mainstream media.  A task force was formed, and doctors strove to get on top of the problem.  From the outset, it was suspected that a virus was to blame - indeed, doctors had already been worried about the prospect of a new infection getting loose in the gay community.  Fortunately, the syndrome seemed to be confined to a limited number of large cities.  As late as summer 1982, the names of all the AIDS cases in San Francisco could still fit on a single blackboard.

Looked at from this angle, AIDS should have been a relatively manageable phenomenon.  But there was another, fatal side to the story.  Doctors were working on the epidemic from the start, but they had scant support and resources.  Some headed down what turned out to be blind alleys: as late as 1982, some researchers continued to believe that AIDS was caused by amyl nitrate poppers or the immunosuppressant properties of semen.  One psychologist even suggested that AIDS was psychosomatic.  The government may have known what was going on, but it did not provide desperately needed funds, publicity or leadership.  Nor did important sections of the gay community.  After the initial flicker of interest, the media mostly declined to cover the epidemic, apparently because editors were squeamish about running stories about gay sex.  When media coverage finally increased for a while in 1983, it was rather shallow in nature and included scare stories about how AIDS might be transmissible by casual contact (these stories were in turn picked up by the British press).  Not until Rock Hudson died in 1985 would AIDS become a media cause célébre.

Worst of all, the apparently limited spread of the syndrome was highly deceptive.  HIV has a very long latency period: it is now recognised that it takes on average 8 to 12 years for HIV infection to develop into AIDS.  As late as 1985, the period was widely thought to be just 2 years.  The awful truth, worthy of a horror movie plot, was that HIV had already got everywhere by the time that AIDS started looking like a widespread problem.  In 1981, in the very earliest period of the epidemic, blood samples taken from a group of apparently healthy gay men in Washington revealed that half already had hidden immune system problems.  Similarly, later analysis of blood samples taken for Hepatitis B research would show that 45% of subjects were already HIV-positive in 1981 (rising from 12% as early as 1979).

The long latency period of HIV, incidentally, rendered useless the early studies that tried to demonstrate that the virus was sexually transmitted by looking at infections among patients' recent sexual partners.  The people who were falling ill when the studies were being done had caught the virus years ago.  It is now believed (based, again, on blood sample analysis) that the average latency period in gay San Franciscans who were infected with the virus at the end of the 1970s was a staggering 10 years.  The researchers were right about sexual transmission, but for the wrong reasons.


II

The response to AIDS was grossly inadequate from just about everyone.  The federal government said that yes, of course, AIDS is our top health priority, but no, we really don't need any more money, thank you.  Government agencies waged turf wars amongst themselves.  Scientists attended to their own agendas, egos and careers.  American and French researchers sniped at each other.  Haemophiliacs argued with gays.  Gays argued with gays, in some cases continuing political feuds that had been running since the 70s.  Everyone formed committees, held meetings and tried hard not to say anything publicly that would alarm or offend people.

In the meantime, no-one seems to have noticed that Americans were falling ill and dying in their thousands.  Shilts draws comparisons with other contemporary or near-contemporary health scares - Legionnaire's disease in 1976, the Tylenol poisonings in 1982 - to argue that AIDS suffered a degree of neglect that was not afforded to other, objectively less serious threats.  To some extent, the apparent lack of concern about AIDS is a product of hindsight, since few people at the time had the slightest idea that HIV had a decade-long latency period or that tens or hundreds of thousands of apparently healthy people were walking around with the virus in their bloodstreams.  All the same, it was known that people were dying in frightening numbers, and that should have been enough.

It seems fairly clear that the Reagan administration was culpable in not fighting the epidemic more vigorously.  To some extent, this may have been due to homophobic prejudice, but a more important reason was that the US government's healthcare establishment was caught squarely in the fiscal belt-tightening of the early 1980s.  President Reagan stopped short of vetoing new AIDS spending, but Shilts reports that money had to be force-fed by Congress to a government which didn't really want it.  The administration insisted on maintaining the public pretence that its doctors had all the money they needed when behind the scenes cash was worryingly scarce.  All the same, Reagan's health secretary, Margaret Heckler, was more than ready to take very public credit when the discovery of the AIDS virus was confirmed in 1984 - which, by a happy coincidence, happened to be an election year.

But Shilts does not simply give a textbook liberal critique of the Reagan administration.  He also turns his fire on Democrats, in particular Mayor Ed Koch of New York City.  More broadly, he attacks the inertia and unprofessionalism of the federal bureaucracy.  The doctors who were employed by the American taxpayer to safeguard the nation's health were not uniformly enthusiastic about chasing or allotting extra funding.  The well-heeled National Institutes of Health appear to have been particularly disappointing.  They were stingy with research funding, and people joked that NIH stood for "Not Interested in Homosexuals" or signified that they were not interested in treatments that were "Not Invented Here".  According to Shilts, the NIH only started taking the epidemic seriously in 1983, and even then its constituent institutes squabbled amongst themselves and played political games with their rivals at the Centers for Disease Control.  The NIH's temperamental virologist Dr Robert Gallo comes in for particular criticism.

The funding gap was not adequately plugged by the private sector.  In 1981, the first full year of the epidemic, less than $15,000 was raised from private donors, and the fundraisers were somewhat resented in the gay community for their pains.  Fundraising was difficult when few big names were willing to lend their support to an unfashionable cause.  Most of the blood industry resisted taking robust anti-AIDS measures for commercial reasons (though suppliers of products for haemophiliacs were forced by different commercial pressures to take the opposite course).  Medical journals failed for several years to fast-track AIDS research papers, until the government bucked them up.  The most substantial private-sector assistance in the fight against the epidemic seems to have come not from any American organisation but from the Pasteur Institute in France, which actually succeeded in discovering the HIV virus in 1983.

The discovery of HIV forms a subplot in itself.  News of the claimed discovery by the Pasteur team was initially greeted coolly in the US, where doctors preferred to wait for the results of Robert Gallo's research at the NIH.  Gallo himself was claiming to have discovered the virus by the end of 1983, and the Americans got to the media first in April 1984 - though it later emerged that Gallo had simply re-discovered the same virus that the French had mailed to him from the other side of the Atlantic.  Gallo wanted to call the new microbe HTLV-III.  This, by chance, would have made it the third member of a group of human T-lymphotropic viruses which had been discovered a few years earlier by the eminent scientist Dr R. Gallo.  The old boy also mused that the stigma attached to AIDS would be diminished if the syndrome were to be given a new name: "HTLV-III disease" had a better ring to it, he suggested.

The French, who had initially given the virus the rather grotesque name "RUB", pointed out that it was entirely unrelated to HTLV-I and HTLV-II, and used the term "lymphadenopathy-associated virus" (LAV) instead.  It did not escape their notice that the Americans' announcement of their "discovery" had the effect of entitling them to the royalties from the new test for the virus.  A lawsuit ensued, and the resolution of the dispute eventually required the personal intervention of Presidents Reagan and Mitterand.

The advent of an HIV test meant that researchers could now get some sense of the progress of the epidemic.  But even this was not straightforward.  It was not initially known whether HIV infection led inexorably to AIDS once the latency period had run its course (it does, except in a small number of lucky individuals).  An AIDS prevalance rate among HIV-infected individuals of 5% or 10% was widely thought to be about right.  When doctors began to realise from the incoming test results just how many people were already infected, some of them seem to have reasoned that HIV couldn't always lead to AIDS.  After all, not all of these people were going to die - were they?  Another quirk of the tests, which still seems to apply to most HIV tests today, is that they detected the presence not of the virus itself but of antibodies to it produced by the individual's own system.  It was suggested that receiving a positive result on an HIV test could be a good thing because it showed that one's body was fighting the disease.

Surprising, perhaps, was the lack of a united and vigorous response from gay leaders.  Some gay activists thought that their more worried brethren were being alarmist or even homophobic.  Gay sexual identity and behaviour had become highly politicised, and in the climate of the Reagan years calls for safer forms of sexual activity were interpreted not as helpful medical advice but as self-hating puritanism.  Some even resisted the two pillars of present-day HIV prevention efforts, condoms and testing.  Meanwhile, closeted gay men in positions of power (including a senior officer of the NIH) were cagey about pushing the cause of AIDS research for fear of drawing attention to themselves.  Everywhere, there developed a politicised, euphemistic way of talking about the epidemic which Shilts dubs 'AIDSpeak'.

Serious bad feeling was stirred up by the likes of Larry Kramer, Bill Kraus and Shilts himself when they tried to point out that the defiant, exuberant political and sexual orthodoxies of the 1970s were meaningless in a world in which uncountable thousands of gay men were catching and dying from a terrifying disease.  In some cases, the motives for inertia were crudely financial.  The data showed that gay bathhouses played an important role in spreading the epidemic, but (with some partial exceptions) bathhouse owners were not eager to warn their customers that they could catch a deadly virus on their premises.  Ordinary gay men without political or commercial baggage saw more clearly what was at stake, and by 1983-4 gay sexual mores were becoming increasingly mundane.  Unfortunately, as Shilts hints, while this limited the growth of HIV/AIDS among gay men, the "second wave" of the American AIDS epidemic, among heterosexual IV drug users and their partners and children, was still to come.

The saddest thing about the response to AIDS as Shilts describes it is that the thousands of avoidable deaths came about not because the government, the medical profession or Americans in general hated gays or welcomed their deaths.  To be sure, homosexuality aroused widespread dislike and discomfort in heterosexual society.  But the unnecessary victims of the syndrome died not so much from hatred as from indifference, committee meetings, pennypinching, turf wars, politics, and general ignorance and apathy.  Contemporary gay activists appropriated the symbols and language of the Holocaust, yet it was a case not of genocide but of malign neglect - which certainly does not make it any the less frightening.


III

The book is perhaps best remembered for the subplot of "Patient Zero" - a Canadian air steward called Gaëtan Dugas who was alleged to be responsible for spreading HIV in North America.  This story took on a life of its own, and for a time Dugas became something of a household name.  He fell ill at the start of the epidemic, in 1980, but survived against the odds until 1984.  He was a handsome man, and he seems not to have let a problem like a diagnosis of potentially infectious immune suppression get in the way of an active and vigorous sex life.  He was quite well known in the gay community, and his friends reported that he was a nice guy.  From around 1982 onwards, rumours began to circulate in San Francisco that he was telling men whom he had just had sex with that he had the "gay cancer" and maybe they would get it too.  One doctor took legal advice in an attempt to restrain him.  Before long, he had moved back to Vancouver, where he is said to have continued his previous behaviour.

The Patient Zero story was very exaggerated, though much of the exaggeration was generated after the book came out (it also seems to have been the source of the urban myth of the mysterious one-night-stand who reveals to his or her partner, too late, that they are HIV-positive).  Shilts leant towards the theory that HIV arrived in America during the bicentennial celebrations in 1976, but it is now thought that the virus entered the US from Haiti around 1969, when Dugas was still a closeted teenager in Quebec (in fact, the virus already seems to have infected its first American victim, "Robert R.", by 1966, but this rather anomalous case is probably unrelated to the main epidemic).  Some writers have even attempted to rehabilitate Dugas, albeit not entirely convincingly.  At any rate, Dugas may well have behaved irresponsibly, even homicidally, but he was hardly the only person spreading the virus around, or indeed the only person to engage in risky behaviour when he should have known better.  The desire to identify a scapegoat is a strong one, though.

Leaving aside the Patient Zero myth, which Shilts was not entirely responsible for, the book has a number of shortcomings.  Most obviously, it focuses heavily on AIDS as a gay disease.  There is some coverage of the impact on haemophiliacs, IV drug users and other risk groups, but perhaps not enough.  This is to be expected, since Shilts himself was gay and his sources came largely from the gay community.

More serious is the mixing of genres.  The book reads not like a history book or even a newspaper report, but like a novel with an omniscient narrator.  Accounts of historical events and publicly verifiable facts are mixed with imaginative reconstructions of meetings and conversations that Shilts was not privy to, complete with internal monologues in which he explores the various participants' thoughts, feelings and spiritual insights.  Sometimes, Shilts depicts characters - including individuals like Dugas whom he clearly hadn't interviewed - in solo scenes with nobody else present.  Now, it may be that (as Shilts himself indicates) every sentence of the book can be footnoted and the contribution of the author's imagination was minimal.  But one might reasonably doubt it.  I am not convinced that this genre-mixing, which is usually found only in biographies and works of experimental history like Keith Hopkins' A World Full of Gods, represents good writing.  Shilts should have decided whether he wanted to write a novel or a non-fiction account, and then stuck with it.

All the same, the book is a monumental achievement, well deserving of its acclaim.  I have no hesitation in recommending it to anyone interested not only in the HIV/AIDS epidemic but also in the workings of politics and bureaucracies, or simply in the consequences of human error.