Reading it again some 20odd years later brought back the anger and the sadness and that helpless, blistering rage. This is the book that made me understand viscerally that me and mine mattered nothing to the government. It's also where I learned that the best intentions can get snarled in the weeds that people passionately devoted to an idea will serve that idea beyond all reason, that profit comes before people, and that it always takes a movie star to catch the public's imagination.
All the mistakes, all the missteps are herein laid out in letters of fire. The Cassandras, dismissed, reviled and hushed at the time, are sadly proven right. Reagan is illuminated in the harsh light of retrospect and found wanting.
A whole generation vanished because the health officials didn't want to talk about anal sex, the blood banks didn't want to admit they should have tested the blood, the gay rights organizations couldn't conceive of closing the baths, the government couldn't fund the scientists, the scientists couldn't let go of their need to be the first, the medical journals couldn't suspend businessasusual, the FDA couldn't understand that double blind studies were inappropriate in the face of an epidemic of this magnitude, and on and on and on. A monumental comedy of errors that could so easily have been prevented.
This book should be required reading for anyone entering any sort of health care profession or who might be a health care consumer some day. Infuriating, wellwritten, and tragically still timely. It could happen again.
This book changed my life. I wish it hadn't had to. Alternately thrilling and harrowing, And the Band Played On: Politics, People, and the AIDS Epidemic chronicles the epidemic’s early years. The work begins at the height of gay liberation on the bicentennial, a few years before the outbreak of AIDS in America, and ends in 1985 with the announcement of Rock Hudson’s death from the virus. Along the way Shilts documents medical researchers’ and gay activists’ embattled attempts to understand the virus and curb its spread in the face of public indifference and governmental neglect. The extraordinarily detailed work of social history’s drawn from Shilts’ reporting for the San Francisco Chronicle on the crisis as it unfolded, and the contents are artfully compiled. Individual stories of groundbreaking researchers and persons with AIDS are skillfully developed over the course of the book, which moves at a breakneck pace, and embedded within a multifaceted analysis of gay life in New York and San Francisco. This book took me a long time to read. I could only read small bits at a time. It was both informative and heartbreaking. And it made me think of friends I've lost. But other friends of mine actually lived through this time. It was a complete travesty how long it took this country to come to action against AIDS. This book is really important, considering:
1. We are likely not safe from another random crazy deadly virus that will catch us offguard.
2. You have probably underestimated what an asshole Reagan was.
3. You might be going to see Milk soon and would like to read of some of what happened after him in SF politics.
4. Prop 8 effing passed, proving our society has farther to come than perhaps we realized.
Points deducted because apparently the Patient Zero story is a bit hinky. Also it's often a lot to keep plodding through it. Still worthwhile, especially as a historical document. This has to be the most maddening book I've ever read, and that includes books on the Vietnam and Second World Wars. As AIDS arrives in the world in the late 1970s, it strikes Africa first, then the American gay scene. Shilts documents the search for the virus in all its muddled, politicized, underfunded, disregarded insanity, during which gay men died quickly or slowly, without drugs that did more than eased their passing for years, in their homes or in facilities that had no more notion of how to care for them than they did, cared for by each other and, slowly, by medical personnel who knew they might be risking their own lives.
Here in the U.S. local, state, and national government issued claims of aggressive pursuit of the disease while doing the opposite. Agencies supposedly committed to the discovery and treatment of the new disease fought one another for credit for any advances in treatment and in finding the virus. Pharmaceutical companies kept to the yearslong proving process for drugs which might buy years of life for sufferers, including seeking out pools of subjects who could get placebos, when in the case of this disease the receipt of the placebo was certain death, instead of the possibility of a few more years with an experimental drug. Doctors, blood banks, and drug companies vied to make money as gays, drug users, and recipients of blood transfusions who got blood while blood banks argued against testing blood for the disease because it was expensive died.
And the politicians who could have created hospices, units in hospitals, and information programs, did nothing.
It's a brilliant book about a heartbreaking time. HBO's movie "A Normal Heart" was written in 1985 by activist Larry Kramer, and you'll recognize some of his characters here: this is the story of what went on before, after, and in the rest of the world. If you're prone to fits of rage, you might want to warn those around you as you read. I lived in NYC during this time, and I had a lot of gay friends. I knew they were being ignored. I didn't know it was this pervasive, or this completely and utterly inhuman. I recall being so incensed at the failure of common decency across every part of the 'establishment' spectrum that I think I can trace much of my continuing skepticism of our political process directly to Randy's work.
I actually think this book should be required reading at college level for any political science class that is examining the flaws of what our system can become. Eisenhower http://youtu.be/8y06NSBBRtY was right in his grave warnings about the danger inherent in the 'military industrial complex'but even more so about the transfer of power 'whether sought or unsought' that could come to pass. Not only in the military industrial complex but perhaps also in the Health Industrial complexwhere, as this book so chillingly portrays, the reality is those in power seek to protect that status quo, even if conscious evil intent is absent.
If you never read this and you want a very real, somewhat raw, but remarkable account of what happened in those times, you would be very hard pressed to find better. And yes, for my conservative friends there may be a bit of a 'liberal' perspective. However, far more importantly it speaks from a human perspectivewhich frankly transcends ideology and as I write this in 2011 seems far too absent from our discussion of costs and deficits and other such fictions. The real truth is far too many people are suffering and this country has had a long and proud history of standing up, whatever the cause of human suffering is, to make it better. I wait for us, with faith we still can, to come to our collective senses once again.
This book was a bright light on injustice ... where is such a light today?
The book is mainly focused on the many tragic protagonists and politics, not so much dealing with science, and brings a new level of acts of inhumanity of a government against its own people to light. I mean, they called it gay cancer, that kind of sounds like a disease of the male, gynecological disorder, or childhood disease, implying and connoting that it´s no problem for all other groups or the general public. Reagan was no good person.
It´s Big History at it´s best, combining all elements with a focus on telling the story through its protagonists, giving a prime example of how it should not be done and making one feel stunned regarding that nowadays (2020) many democratic governments are filled with the same indoctrinated persons. The only difference may be that they can´t openly act out their misogyny, racism, homophobia, etc., they sometimes even don´t realize by themselves and deem themselves to be good people, and hide it behind economic and political pop pseudoscience that indirectly legitimates them to do things that lead to the problems.
If it would have only been the state, but the health care sector, the doctors, blood banks not testing, everyone was on the bandwagon effect train of homophobia those days and helped to prevent an intelligent solution to avoid a sexually transmitted, at the time always deadly, epidemic. The most illogical and disturbing fact is that the world of medicine treated normal diseases, the media could talk about and got funding by the government to prevent catastrophes, because it were child friendly, normal, prime time people who suffered.
That it are often single tragedies like Rock Hudsons´ death that lead to a change in public opinion, has a dark and a light sight, a sweet and bitter taste. It´s great that single individuals, be it through their tragic death or nowadays with their activism to tell more about problems than the pseudo education system can do, as it shows that really everyone can change the world. It´s dark and gritty because it shows that as long no megastar talks about it or a white, rich, person suffers from it, the problem is camouflaged, downplayed, or seen as „their“ problem, plague, or, worst, own fault.
But as many times before (and today), as long as the disease just affected the poor, discriminated, or, in this case, gay people, it could be even interpreted as a punishment sent by higher entities and nothing one wanted to talk about. So no money for cures, no coverage, a cloak of silence until it escalates so much that it can´t be ignored anymore because the few objective newspapers keep nagging with their insidious and penetrant questions and proved facts everyone else ignored. So now, with years of unnecessary delay, the ministers and bureaucrats are of course trying to get started and help the population and today the governments aren´t that ignorant and inhuman anymore? No, of course not.
It´s one of the worst medical problems, because as long as the policy doesn´t change from neoliberal stupidity to an ecosocial Nordic model, the majority of the poor and uninsured population keeps spreading the virus. And we are talking about a rich, industrialized country like the US here, the conditions in the Southern hemisphere are so terrible that it´s reasonable for politics and media to avoid any talk about it. Developing countries prisons and rudimentary health care systems are breeding grounds for a mixture of all kind of multi resistant superbugs, but there is (still) no money to make with finding a cure as long as the problem hasn´t sufficiently infected enough Westerners to be interesting for big pharma, not to speak of any government or malaria or neglected tropical diseases.
One of the most impressing acts of incompetence was the governments attempt to close the bathhouses to stop the spread in hope of a kind of
„out of sight, out of mind, no problem anymore“ motivation and ignoring the discrimination leading to the closeted problem, missing research and funding for cures, instrumentalized science, the missing publicly funded health care system, and the mixture of hate and prejudice floating trough the administration. It´s so much easier to blame any kind of minority using blatant lies or just ignore the problem than to self reflect.
It´s difficult to find something that is close to letting a disease, those extreme worldwide spread could have easily been prevented, circulate in the own population until it grows to one of the worst plagues in human history because of conservatism, stupidity, hate, racism, and bigotry. A new paragraph would have to be added to the international human rights violation acts, possibly to the already existing laws regarding the negligent and wanton spread of epidemics and pandemics, but referring to the special circumstances of the impossibility to deal with it with quarantines or vaccines (still).
I´ve read many bad things about kings, god emperors, presidents, and stuff, but I can´t find similar examples, because it didn´t end, as in the past, with the atrocities like war, genocide, or slavery, but will continue forever with the worst consequences for the poor people in the Southern hemisphere as they won´t even get the vaccine if it´s finally developed. Just as they don´t get the drugs making the lives for wealthy, infected people in industrialized countries bearable to normal nowadays.
A wiki walk can be as refreshing to the mind as a walk through nature in this completely overrated real life outside books:
If you want to get angry:
https://en.wikipedia.org/wiki/Conserv... If you want to be infuriated as fuck and saddened to your core, read this book. And the Band Played On shows how AIDS was able to spread unchecked for so many years during the early days of the epidemic. It highlights the stories of different people who died of AIDS as well as the doctors, researchers, and politicians working to combat the epidemic.
While this book did make me sad to see the stories of so many different people who died of AIDS, this book mostly made me so incredibly angry. Whether it was in the beginning, before it was called AIDS, and only seen as a “gay disease” so most of the population didn’t care or the government wasn’t giving enough money to organizations. Or the blood banks refusing to admit that people could be infected through transfusions because they didn’t want to lose money. Or the bath houses refusing to see that their establishments were environments that allowed AIDS to flourish, again because they didn’t want to lose money. I just wanted to travel back in time and grab these people and shake them while screaming "OH MY GOD PEOPLE ARE FUCKING DYING. DO SOMETHING"
I wanted to read this book because most of my knowledge of the AIDS epidemic came from seeing it portrayed in fictionalized ways in books or movies. I’m definitely glad that I read this book because now I feel like I have so much more of an understanding of what happened to let the situation get so out of control. However this was a very difficult reading experience. The subject matter of the book is so upsetting that I took a year long break in the middle of the book before finishing it recently.
Coming in at just over 600 pages, this book is definitely daunting to pick up. Especially because it deals with medical research and various political figures. Randy Shilts did a good job of making all the medical and political information easy to understand. Also, there are so many different people featured in this book from all around the world so it might seem like it would be difficult to remember who all the different people are. But Shilts makes sure to reintroduce everyone with their position frequently, which makes the story easy to follow.
I’d recommend reading this book if you’re interested in learning more about the early days of the AIDS epidemic. But be warned, it’s a harrowing journey.