Book Review: And the Band Played On

By Al Preston

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  The AIDS crisis was a terrible and sad moment in history for everyone; doctors, governments, and—most of all—those who were affected by the disease. When I began studying recent queer history, I knew I needed to research and understand the initial event. However, I knew how hard it would be to research. Catastrophes like that are hard to study closely for a long time. Especially the AIDS crisis where many of the deaths could have been avoided.

            And the Band Played On: Politics, People, and the AIDS Epidemic by Randy Shilts is a near day-by-day account of the AIDS crisis. Shilts was one of the few journalists reporting on the crisis from its beginning. This book is a background look at how AIDS was handled, highlighting people who may have never come to light otherwise.

            The doctors who fought for their dying patients, the political activists who pushed the government to act, and the major voices that changed the course of the AIDS crisis with their work are laid out chapter to chapter as almost tragic heroes. Shilts brings to light a lesser-known history of the AIDS crisis.

This book is a monolith. It covers about six years. Shilts is also a fantastic writer who creates powerful and expansive narratives. He could not cover it all, of course. He already wrote a massive book about a particular angle of the AIDS crisis; it would have been another 600 pages to cover what he missed.

Regardless, this was an excellent, long read. As this is a very long book, this review will be a bit longer than most. There’s so much to talk about.

            It’s not an easy read. I was glad to be a bit busy as I read it, so I could take plenty of breaks. Between the stupid choices people in power made and the pride of doctors and the predatory actions of the academic researchers, I was frustrated just as much as I was angry and terribly sad. I was appalled at the actions of gay leaders and people. At the willful ignorance of the government. At the bigotry of institutions unwilling to acknowledge AIDS at first because it was a ‘gay disease’.

            I was not aware of the horrible diseases that AIDS allowed to infect people. Diseases that had not infected people for ages to diseases that had only infected animals in all of history were cruelly taking lives. I knew it killed people I did not realize exactly how or the horror of the diseases that people got.

            When those who lived through the crisis talk about it, they rarely explain what or how people died, just that they suddenly died one day.

            Shilts beautifully weaves an utterly frustrating story where gay men, government agencies, doctors, and researchers all didn’t care the loss of life occurring due to AIDS. Gay leaders and organizations resisted and resented those trying to stop AIDS from spreading because they fought for the right to have wild and unsafe sex. Death was not nearly as important as their right to have sex. For those trying to stop the spread and caring for those dying, these leaders were shortsighted, who weren’t understanding that if everyone was dead, there was no one left to have rights.

            Government organizations resisted giving life saving money to the cause. They had their officials lie to the face of the nation and the House of Representatives that they were doing everything they could when they were actively foiling most attempts to get money and funds for research and care for the dying.

            Blood bankers refused to believe AIDS was even a problem that existed. That the blood they were taking was extremely dangerous and liable for killing thousands of people. Money meant more to them than protecting the lives of the people they claimed to serve. Their arrogance led to hemophiliacs being infected with AIDS.

            Doctors and researchers argued that AIDS was a dead-end field of study. That there were more interesting and fruitful things to study. None of them wanted to be associated with a ‘gay disease’. There was no glory there, nothing interesting. They actively went against their oaths to do no harm by bickering with each other and caring only about glory and not human beings.

            Between every frustrating conversation and apathetic attitude was an activist, doctor, and government official doing their absolute best to get something, anything done. These are the main people Shilts focuses on to weave this narrative of AIDS and the struggles these few good actors faced.

As the story went on, I was waiting for someone to care. For the doctor’s and activists to convince someone, for someone to realize that they were letting so many people die for petty reasons. Yet I knew I had so much more of this book in my hands.

Section to section, I was appalled all over again by the inaction of people in power and indifference of doctors who should have cared about the lives of human beings, regardless of their sexuality. Every section, I hoped for something good, for the built up moves and choices to change the tides like they wanted only to be disappointed again and again simply because of one important player refusing to care.

That frustration and anger I felt was certainly less than the exact same feelings the main people Shilts highlights. At one point, Shilts quotes an exhausted members of the National KS/AIDS Foundation who was talking about the resistance they were receiving from gay leaders over the dangers of unsafe sex; “Let them all die if that’s what they want to do” (page 379).

As heart breaking and harsh as that must sound, by that point in the book, I completely understood that sentiment. I could see myself saying the same. On all sides, those who were trying their best to save people were hitting frustrating wall after frustrating wall. I was amazed that most of them kept persisting until the end of 1987 when the rest of the world started caring about AIDS. I felt just as exhausted as they must have, and I was only reading after the fact. I can’t imagine how they felt being there in the moment.

The moment that sticks with me the most from all of this, was a story about a man who was flown to San Francisco from Florida because the doctors in Florida did not want to care for him. A man, suffering horribly from AIDS, taken across the country, unable to realize or know what was happening to him, was dumped into the offices of the AIDS Foundation in San Francisco. Not even a hospital (374-375).

The lengths people went to give people AIDS was baffling. In their efforts to process their own mortality, they purposefully went out to infect others. If they were going to die, they would bring the world down with them. The man that came to be known as ‘patient zero’ of AIDS in the Americas continued to infect other gay men despite many people begging him to stop.

On the flip side, there were moments where people were doing amazing work. Larry Kramer, infuriated by the inaction of the mayor of New York, wrote a stage play about the arguments, frustrations, and apathy of the crisis that moved audiences and forced the mayor to finally acknowledge the struggling AIDS organizations of New York.

Bill Kraus and Tim Westmoreland successfully pushed the government to give up funds for research and support for AIDS early on into the crisis. Then, when able, the research done across the nation helped prevent the spread of AIDS and aided in the research that eventually found medicine that protects and prevents HIV.

Pittsburgh actually appears in this book! On page 553 Shilts writes: “In Pittsburgh, a city with a relatively low incidence of AIDS, 25 percent of gay men in one study were infected with the virus, and an additional 2 percent of local gay men were being infected every month.”

The Pitt Men’s Study is an interesting part of both Pittsburgh and AIDS history. Shilts only mentions it in that one sentence, but it is a telling one.

Nearing the 90s, Pittsburgh’s AIDS cases were either stagnant or falling. That’s not to say many people didn’t have AIDS or didn’t die from it. What seemed to be happening was that there were no new cases although many had it. Folks who left the city and got AIDS in other places came back to die and their treatment at the local hospitals was considerably better than many other cities in the US.

As soon as it was clear what could spread AIDS, the Pittsburgh gay community tended to put a stop to unsafe sex. They even pushed the bathhouse to close. It helped as, according to most of our narrators, that Pittsburgh wasn’t a city where wild sex was typical to begin with.

While the city is only a sentence in this monolith, I was happy to see it. The Pitt Men’s Study was important to AIDS research and a show of Pittsburgh’s unique queer community. However, the good never lasted long in this story. I cried at the end of this book. I wept over the tragic, yet peaceful, death of one of the book’s major activists. I won’t say who for those who wish to read this book. He was not only my favorite, but, in my eyes, he made the most sense and worked so incredibly hard and got some very amazing early successes. He reminded me of myself, of the way I may have acted had I been in his shoes. I grew the most attached to his story.

When he was diagnosed with AIDS, I knew he was going to die. However, when I got to the end of his life, I couldn’t help but cry. No one deserved to die of AIDS, but his death hit me the hardest of the entire book. Shilts did such a beautiful job writing, that I felt like I knew and understood this man and I wept along with his friends when he died.

That man was one I came to know over 600 pages, and he is one of, as of 2018, over 700,000 people who have died of AIDS in the US alone. And at the end of this monolith, I knew that—had more people listened, had more people cared—that number would be so much smaller. My heart breaks knowing that. At that man’s death. At every death in the book.

There is knowing how devastating AIDS is and there’s watching it unfold knowing that it didn’t have to be that way.

There is something almost horrific about the way some doctors treated AIDS. While many genuinely wanted to save lives, the rest of the medical field cared very little. Big institutes who could fund research had presidents who believed the death of gay men was a good thing. Or their scientists only cared if AIDS research could give them fame or money. Little consideration was given to human lives.

Other institutions didn’t want to be associated with a gay disease fearing that doing so would chase away grants and scientists. Much of the underlining implication was that they would rather let people die than be assumed to be gay in any way. Ironically, many of the scientists who did their best to help were often called homophobic by the gay community.

On the flip side, some of the researchers who did take on the disease only did so for the glory. I will happily call out Dr. Robert Gallo. I hate him as he was presented by this reading. He was one of the most frustrating people.

Not only does Shilts thinly suggested that Gallo stole specimen from the French Pasteur Institute who rightfully discovered the virus that causes AIDS (known eventually as HIV) but did so purely so he could get the honor and glory of discovering a new virus in order to get a Nobel Prize. As he did this, he undermined the French doctors because he had more prestige in the US academic world.

He was a prideful and anger driven man who prevented the Center of Disease Control (CDC) and the National Health Institute (NHI) from getting access to his work because he wanted the glory completely to himself. Even when scientists who once worked for him moved onto other labs, he despised them enough to tie up their work in bureaucracy or just straight refusal to be collaborative. Gallo did all of this so he alone could have the glory for discovering HIV and get the prize for saving the very lives he was happy to waste to achieve that goal. Every time he appeared on page, I knew I was about to be furious.

In the end, while it was clear that the French made the discovery first, Gallo’s prestige and the US’s superiority complex led to Gallo being a co-discoverer of the virus. He didn’t get the Nobel Peace Prize which did make me happy, but I was still furious he had gotten even that much.

That leads me to another group that made me so annoyed. Bureaucracy and general disinterest of the US government killed hundreds of thousands of people. Much like institutions believing that gays dying was a good thing, so too did the Reagan administration. They did not, and never did, care about AIDS. They didn’t care about the intravenous drug users (those who utilize needles to inject drugs) and their babies. They didn’t care about Haitians of hemophiliacs. They didn’t care about blood transfusion cases.

Perhaps, for a moment, Reagen personally cared when his friend Rock Hudson died, but that was one person. In the end, the ‘good’ of his and his administrations political goals were still more important. The only thing that forced their hand was the media attention AIDS was suddenly receiving.

Many times, those in the system who did care demanded to know how many had to die before these people cared. Blood banks dug their heels in for hundreds of deaths due to blood transfusion. Tens of thousands of gay men died. In the end, the answer was and continues to be, until someone who mattered to them got sick and public out cry would make the government look bad if they continued to do nothing.

And it continues to be that way, even now. JFK Jr. sprouts these horrible ‘theories’ that AIDS and HIV were caused purely by poppers and gayness itself. This is an old theory from the beginning of the epidemic where no one knew anything at all about AIDS. He wants to end PrEP, the HIV medication who lets people live long and happy lives. Queer folks, hemophiliacs, and drug users no longer die horrible and painful deaths because of this medication.

JFK Jr. is a bigot who hates queer folks, and it doesn’t matter that PrEP protects the lives of people he claims to care about. After all, to him and the people who agree with him, a dead gay, child, or non-conforming person is better than admitting that their point of view might be wrong.

Reading this book in this era of my life was a choice. I could see and know how we got to today. I could see the same beliefs, apathy, and bigotry of today appearing and developing back then. While every failure of the system to help people made me sadder about the state of the present, the success at the end, where the activists managed to get what they needed to eventually make PrEP, gives me some hope.

We survived that, we made it to the other side. We can make it out of this too.