The story of these first five years of AIDS in America is a drama of national failure, played out against a backdrop of needless death.
Though this book has been on my list for years, it took a pandemic to get me to finally pick it up. I am glad I did. And the Band Played On is both a close look at one medical crisis and an examination of how humans react when faced with something that does not fit into any of our mental boxes—not our ideas of civil liberty, not our categories of people, and not our notions of government responsibility. As such, this book has a lot to teach us, especially these days.
Randy Shilts was working as a reporter for the San Francisco Chronicle. This position allowed him to track the spread of this disease from nearly the very beginning. Putting this story together was a work of exemplary journalism, involving a lot of snooping and a lot more interviewing. What emerges is a blow-by-blow history of the crisis as it unfolded in its first five years, from 1980-85. And Shilts’s lens is broad: he examines the gay community, the epidemiologists, the press, the blood banks, the medical field, the research scientists, and the politicians. After all, a pandemic is not just caused by a virus; it is the sum of a virus and a society that allows it to spread.
The overarching theme of this book is individual heroism in the face of institutional failure. There are many admirable people in these pages: epidemiologists trying to raise the alert, doctors struggling to treat a mysterious ailment, gay activists trying to educate their communities, and a few politicians who take the disease seriously. But the list of failures is far longer: from the scientists squabbling over claims of priority, to the academic bureaucracies squashing funding requests, to the blood bankers refusing to test their blood, to the government—on every level—failing to take action or set aside sufficient funding.
A lot of these failures were due simply to the sorts people who normally caught AIDS: gay men and intravenous drug users. Because both of these groups were (and to some extent still are) social pariahs, major newspapers simply did not cover the epidemic. This was crucial in many respects, since it gave the impression that it simply was not worth worrying about (the news sets the worry agenda, after all), giving politicians an excuse to do nothing and giving people at risk an excuse not to take any precautions. The struggle in the gay community over how to proceed was particularly vexing, since it was their very efforts to preserve their sexual revolution which cost time and lives. As we are seeing nowadays, balancing civil liberties and disease control is not an easy thing.
But what made these failure depressing, rather than simply frustrating, was the constant drumbeat of death. So many young men lost their lives to this disease, dying slow and agonizing deaths while baffled doctors tried to treat them. When these deaths were occurring among gay men and drug users, the silence of the country was deafening. It was only when the disease showed the potential to infect heterosexuals and movie stars—people who matter—that society suddenly spurred itself into action. This seems to be a common theme to pandemics: society only responds when “normal” people are at risk.
Another common theme to pandemic is the search for a panacea. At the beginning of the AIDS crisis, there were many claims of “breakthroughs” and promises of vaccines. But we still have neither a cure nor a vaccine. Fortunately, treatment for HIV/AIDS has improved dramatically since this book was written, when a diagnosis meant death. Pills are now available (Pre-Exposure Prophylactic, or PrEP) which, if taken daily, can reduce the chance of contracting HIV through sex by almost 99% percent. And effective anti-viral therapies exist for anyone who has been infected, greatly extending lifespans.
Unfortunately, these resources are mostly available in the “developed” world. In Sub-Saharan Africa, where resources are scarce, the disease is still growing, taking many lives in the process. Once again, a disease is allowed to ravage in communities that the world can comfortably ignore.
One day, a hardworking journalist will write a similar book about the current coronavirus crisis and our institutions’ response to it. And I am sure there will be just as much failure to account for. But there will also be just as much heroism.
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