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Randy Shilts: And the Band Played On
Nov. 30th, 2017 07:49 amI have recently been thinking a lot about AIDS, about the ways in which it has affected me and the people I know and care about. This has resulted in my picking up a small collections of books on various aspects of the AIDS epidemic, including Randy Shilts' classic, And the Band Played On, which I've read before but felt the need to revisit, especially after reading David France's How To Survive a Plague, which covers some of the same ground, but from a different perspective, and with a more concentrated focus on New York activists and issues.
Shilts' account, like that of France, is informed throughout by the brutal truth that no one in power, and very few in the American population, cared about what happened to a bunch of gay men except the men themselves, their friends, lovers, and - sometimes - their families, and a few dedicated scientists and doctors who saw these men as their patients, sometimes even as their community. If the disease had surfaced in almost other community, the history of AIDS in North America, and perhaps globally, might have been very different. But the first communities obviously affected were social pariahs - gay men, intravenous drug users, black immigrants from Haiti. People no one really gave a damn about. By the time it reached hemophiliacs, and other blood transfusion recipients, and a significant number of heterosexual people, it was too late to stop the tidal wave.
"The bitter truth was that AIDS did not just happen to America—it was allowed to happen by an array of institutions, all of which failed to perform their appropriate tasks to safeguard the public health. This failure of the system leaves a legacy of unnecessary suffering that will haunt the Western world for decades to come."
Shilts is primarily telling the story of the efforts made by scientists involved in the fight against AIDD, and those who shared information with them, to track and research the disease in its early days, without anywhere near the necessary resources in people or funding. It's a refrain that echoes through the book, with researcher after researcher lamenting that they have no money to complete studies or analyse their data, to hire staff, to access equipment, to do any number of things that are essential to medical research on a mysterious new disease. There are frequent comparisons with the response to Legionnaire's disease and toxic shock syndrome where funds and resources were speedily made available to determine the cause of a disease which threatened fewer lives.
He also uncovers the ways in which politics - at the party level, the federal and state levels, the municipal level, and within the gay communities of cities such as New York and San Francisco interfered with the research process, limited the public health responses, kept the media and the public from understanding the true scope of the epidemic, and undermined attempts to stop it before it became unstoppable.
Shilts makes an important point about the disease - once researchers realised they were likely looking for a retrovirus, it was not that difficult a scientific task to find the virus responsible. Unfortunately, for a variety of reasons, the search was made far more difficult than it needed to be. American researchers were delayed by funding issues and by a culture that downplayed the importance of working on a 'gay disease.' The political will to support the research did not exist. In France, researchers working under Luc Montagnier at the Louis Pasteur Institute actually found the infectious agent, now known as HIV, but which they initially called LAV, a full year before anyone in the US, but lack of resources made it difficult to perform the necessary research tasks to confirm their discovery, and grandstanding by the foremost American retrovirologist, Robert Gallo, undermined international respect for the French team. Gallo seemed to be always on the verge of being ready to announce that his lab had found the virus, which he insisted was related to previous retroviruses identified by his lab. The medical research establishment, kept brushing aside the French team's reports of having found the infectious agent, saying, in essence 'let's wait and see what Bob Gallo has.'
A further effect of Gallo's insistence that the infectious agent was related to the HTLV family of viruses he had discovered was that much of what little research there was in the US on fighting the disease focused on deepening the understanding of this particular family of retroviruses. It would later be acknowledged that HIV was not related to HTLV, and functioned rather differently in crucial ways. The HTLV research did nothing to further the fight against AIDS, but rather hampered it by using resources that could have been directed more effectively.
Politics and nationalism slowed recognition of the Pasteur team's achievement, setting research into development of effective anti-viral medication back at least a year. Lacking the vast resources of the American medical and pharmaceutical industry, French researchers did what they could, and were involved in testing potential anti-viral drugs well before the Americans, but it wasn't enough. The global co-operation necessary did not exist, and the Americans did not have the interest or the political will to lead the search: "Officials at the National Cancer Institute assured everyone that they were screening every possible drug for experimental trials in AIDS patients. What they didn’t reveal was that this federal screening program consisted of Dr. Sam Broder and two technicians; a federal hiring freeze prevented the NCI from augmenting this program."
Furthermore, without scientifically accepted evidence that there was an infectious agent which was being spread by sexual contact and blood exchange, the disease was allowed to spread unchecked for a more than a year following the isolation of the causative virus. The use of contaminated blood products and continued unsafe sex and drug-use behaviours among high-risk populations, without the proper warnings being made available, let alone blood testing and serious AIDS education programs, resulted in increasing levels of infection.
Given what is now known about the path taken by HIV, reducing the size of the epidemic in America through prompt action and adequate funding for research could have saved lives not only there, but in the countries where AIDS arrived as a result of sex tourism - Europe, Australia and much of Asia. As Shilts says in the book:
"Later, everybody agreed the baths should have been closed sooner; they agreed health education should have been more direct and more timely. And everybody also agreed blood banks should have tested blood sooner, and that a search for the AIDS virus should have been started sooner, and that scientists should have laid aside their petty intrigues. Everybody subsequently agreed that the news media should have offered better coverage of the epidemic much earlier, and that the federal government should have done much, much more. By the time everyone agreed to all this, however, it was too late."
While I was rereading the book, I also rewatched the film that was made based on the book. It's interesting to note how the narrative was altered to make the film more accessible, and more marketable. The character of Dr. Don Francis, played by Matthew Modine in the film, is elevated from the position of just one of many researchers - albeit one who made some key connections early on about the possible nature of the new disease - to a more heroic and central role. The two women who played important roles in Shilts' account - Dr. Mary Guinan and Dr. Selma Dritz, were subtly diminished. Shilts describes Dr. Guinan as being in her early 40s, with a "harsh Brooklyn accent and straightforward demeanor [that] belied a maternal sensitivity that flavored her concern about the epidemic. Maybe that’s why she was such a good field investigator, colleagues thought. She came across as both strong enough to hear the blunt truth and empathetic enough to let you know she really cared." In the film, the character of Mary Guinan becomes a young and somewhat self-effacing woman, though the actor, Glenne Headly, does invest the character with a no-nonsense, hard to shock attitude toward her work. In the film, Dr. Selma Dritz is presented more as a convenient social worker who facilitates the actions of others than an epidemiologist in her own right researching the spread of AIDS - her status as a medical doctor is never referenced in the film, for example. It's Lily Tomlin's strong performance that makes the character memorable.
Obviously, much detail was cut from the book to provide a clean, straightforward narrative. Key lines from the book are often transplanted to different situations and circumstances, and spoken by different characters. The crucial message of the book, however, is made very clear in the film: that the Reagan administration contributed significantly to the scope of the global AIDS epidemic by ignoring the warnings of scientists and public health officials, and by refusing to properly fund the search for the cause of the disease.
One of the most controversial aspects of both book and film is the treatment of Quebecois Airline Steward Gaëtan Dugas. Shilts himself acknowledged that he sensationalised the role of Dugas - "Patient Zero" - in his book at the request of his publisher, but the film goes much further. Shilts notes that Dugas was only one of several people, indeed, only one of three airline stewards, identified in the cluster studies who travelled frequently both internationally and cross-country, and was not by any means the person reporting the most sexual encounters. The film focuses narrowly on Dugas, suggesting that he may even have brought the disease to North America, when in fact he was simply the nexus in one cluster of sexual contacts. Furthermore, his position as a nexus is quite likely due to the fact that he was in fact very co-operative, sharing with CDC researchers the names of many of his American contacts as well as providing samples for research on multiple occasions. In the film, his 'casual' attitude toward sexuality is exaggerated in order to emphasise the idea of gay sex as anonymous and without personal connection. In the film, his lovers don't even know his name; in the book, it is a former lover who provides the researcher with his phone number. Of course, genetic analysis of variants of HIV found in stored blood samples going back to 1970 has since proven that the disease was well established in the US long before Dugas arrived on the bath house scene. He was not the cause of the AIDS epidemic in the US, nor was he the vector by which the disease was spread from New York to the West Coast. He was simply one of thousands of very sexually active gay men who became an early victim of a disease that could have a latency period as long as ten years.
Shilts himself would later die from the disease that had spread so ferociously across the continent, and then the world. And the epidemic continues to spread, despite the development of drugs that reduce the viral load to almost undetectable levels in many people living with AIDS, and despite the educational programs on harm reduction.
In Canada, the incidence of AIDS is increasing, particularly among Indigenous peoples. Worldwide, incidence is highest in sub-Saharan Africa, and some countries in the Caribbean. People continue to be infected, and people continue to die. The human immunodeficiency virus, which is now believed to have begun its long journey around the world about a century ago, is now a part of our lives and will be so for a long time to come.