I was quite young when AIDS broke out in the United States, and the epidemic has never affected me personally. I vaguely remember watching a movie in middle school of a kid who got AIDS from a blood transfusion, and that's about it. More recently, I read The Great Believers by Rebecca Makkai. It was the first book that really made me see how devastating AIDS was for the communities hit hardest. Makkai's portrayal of AIDS among gay men in Chicago probably led me to reading this book.
I thought this book was interesting and readable. There is an incredible amount of detailed information, starting with one of the first European cases of AIDS, as well as the first known cases in New York and San Francisco. Shilts discusses who figured out there was a new disease, and who responded well to it. There are a very large number of players involved in this book, which could sometimes be confusing, but it was fascinating to see how it all went down with the benefit of hindsight.
What makes this book even more interesting now are all the comparisons you can make to Covid. The only difference is that with the passage of time, it has now become clear who was right and who was wrong when it comes to AIDS. In the midst of it, with many clamoring voices, disparate reactions, and newly emerging research, I can see how it would be difficult for the average layperson to have any idea of what was actually going on.
"Later, everybody agreed the baths should have been closed sooner; they agreed health education should have been more direct and 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. Instead, people died. Tens of thousands of them."
There are so many fascinating details in this book, but I could go on forever if I tried to cover it all. Instead, I think I'll just do a walk of shame for those people who most annoyed me for putting their own interests above other people's lives and generally acting like assholes. This is certainly not a comprehensive list.
1. Reagan administration - Not only did the Reagan administration consistently refuse to put any new money towards any kind of AIDS research, they lied to Congress about not needing any more money. They consistently claimed that AIDS was "their number one priority" while making it difficult for doctors to make any headway on it. The hypocrisy drove me crazy. If you're going to callously ignore people who are suffering and dying because you disagree with their lifestyle, own up to it.
2. "In Albany, Governor Mario Cuomo was proof that official disinterest in AIDS knew no party lines." (340). The New York City mayor was no better. It's fascinating that San Francisco became known as the AIDS capital of the world even though New York was the center of the epidemic and had significantly more cases. The only difference was San Francisco was actually doing something about it while New York was sticking its head in the sand. This was partly due to the fact that gay men in New York were generally more closeted while gay men in San Francisco held significant political power.
3. Bath Houses - even with their customers dying and knowing that they were the main source of transmission, bath houses used their political and economical power to keep their businesses open and spreading infections left and right. Initially, they were only asked to provide information on AIDS, and failed to do even that. Even when it became obvious that major changes were needed, they threatened to withdraw their advertising from gay newspapers and organized protests to keep their businesses open.
4. Blood banks - even when information was out there showing that people were getting AIDS from blood transfusions, the blood banks refused to do any kind of testing. Stanford University Hospital was the only major medical center in the United States to test blood for evidence of AIDS infection early on. Thousands of people died horrible deaths, including a beloved San Francisco grandmother who'd had hip surgery, because blood banks did not want the expense of testing. Dr. Bove requires special recognition in this category for congratulating himself for being "technically accurate" when he said that "evidence for blood transmission is lacking"--giving the blood banks reason to deny the CDC's recommendations for testing blood. He later said, "I was extremely cautious about my choice of words. I didn't want to go on the record either way. I was smart enough not to say it wasn't there. Technically, I was not inaccurate." Congratulations, Dr. Bove, for being technically accurate and still responsible for thousands of deaths.
5. Dr. Robert Gallo was especially irritating, seeming to care more about his own ego than anything else. Apparently Gallo was a well-known researcher who had isolated another virus earlier in his career. He was sure that HIV was another version of the virus he had isolated previously--because of course the world should revolve around his accomplishments. But when French doctors at the Pasteur institute isolated the HIV virus, calling it LAV, Gallo went out of his way to denounce them and make sure that the rest of the world took no notice of their remarkable find. Then, at least half a year later, Gallo stated that he'd found the virus that causes AIDS. Funny enough, he found the virus after the French doctors had given him a sample of the LAV virus they had isolated. And the virus Gallo eventually isolated was virtually identical to the one he was given--impossible unless the virus had come from the same person. Gallo's ego continued to slow down AIDS research throughout the 1980's.
6. Gaetan Dugas was a French-Canadian airline steward who was one of the earliest AIDS patients. He slept with thousands of men and was sometimes called "Patient zero." What makes Dugas unlikable were his actions after he knew he had AIDS and knew he could spread it to others. There were reports of a man matching his description turning the lights down in a private room in a bathhouse. After he slept with someone, he would turn up the lights, showing his lesions and say, "I have gay cancer, and now you do, too."
All in all, this was a great book. Shilts managed to give an idea of the big picture while focusing in on enough people that you could see how devastating and terrifying this new disease was to those suffering from it. I also came to realize how much politics and perception can affect our health. Highly recommended.
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