Wednesday, August 8, 2012

Book Review: And the Band Played On: Politics, People, and the AIDS Epidemic, by Randy Shilts

And the Band Played On: Politics, People and the AIDS Epidemic
by Randy Shilts 
St. Martin's Press
602 pages 

And the Band Played On opens with a vivid, spectacular scene: the country's Bicentennial celebration on July 4, 1976 with the Tall Ships from fifty-five nations gathered New York City's harbor. It was an incredibly festive occasion, a symbolic display and a coming together of people and nations.

Unbeknownst to us, something else was commencing that day - something that would forever change and darken the country that was so joyfully celebrating its 200th birthday.
"New York City had hosted the greatest party ever known, everybody agreed later. The guests had come from all over the world. This was the part the epidemiologists would later note, when they stayed up late at night and the conversation drifted toward where it had started and when. They would remember that glorious night in New York Harbor, all those sailors, and recall: From all over the world they came to New York." (pg. 3)
From there, And the Band Played On meticulously takes the reader through the very beginnings of what would become the AIDS epidemic. Journalist Randy Shilts traces the earliest victims in Africa, in San Francisco and New York as they begin to come down with mysterious, unexplained, and nameless conditions.

Shilts presents a literal, month-by-month, sometimes day-by-day chronology of events. The chapters are broken into years and the subheading are the actual dates. This becomes, then, akin to a 600+ page diary of AIDS from 1979 until 1985. (The tipping point of AIDS, ushered in upon Rock Hudson's diagnosis, is discussed in a brief epilogue.)

The calendar, diary-like format of And the Band Played On is downright chilling and foreboding:
" the United States fifty-five young men had been diagnosed with some infection linked to the new virus by the end of 1980. [my note: the same number of the Tall Ships that visited just four years earlier.] Ten others had been diagnosed in Europe, while many more were ailing among the uncounted sick of primitive Africa. Slowly and almost imperceptibly, the killer was awakening." (pg. 49)
It's more than a bit disconcerting reading And the Band Played On thirty years hence. It's like going back to the future. It's like reading a mystery novel where you know the clues - and you just want to reach into the pages and stop people and time in their very tracks, to shake them, to warn them about what's ahead. Because we know - the good and the bad. Things are so different now and we know so much now that we didn't know then, especially in the very early days, which are really, really tough to read about.

Shilts pulls no punches, leaves no stone unturned. There are aspects of this epidemic that you know or have perhaps heard about - the stalled funding and inaction from the NIH (the "joke was that the agency's initials stood for "Not Interested in Homosexuals") and the CDC, and the lack of media attention - but until you actually read about it in the amount of detail described here, and see the impact it had on so many lives ... it is beyond sobering.

Reading about the response to the Tylenol crisis as compared to the AIDS epidemic - both of which were happening in October 1982 - put this in an enlightened perspective.
"The New York Times wrote a story on the Tylenol scare every day for the entire month of October and produced twenty-three more pieces in the two months after that. Four of the stories appeared on the front page. The poisoning received comparable coverage in media across the country, inspiring an immense government effort ....The Food and Drug Administration had more than 1,100 employees testing 1.5 million similar capsules for evidence of poisoning, and chasing down every faint possibility of a victim of the new terror .... Tylenol's parent company, Johnson and Johnson, estimated spending $100 million in the effort ....
In the end, the millions of dollars for CDC Tylenol investigations yielded little beyond the probability that some lone crackpot had tampered with a few boxes of the pain reliever. No more cases of poisoning occurred beyond the first handful reported in early October. Yet the crisis showed how the government could spring into action, issue warnings ...." 
The subtitle of And the Band Played On is Politics, People, and the AIDS Epidemic. Journalist Randy Shilts excels at covering the politics and the people behind the epidemic. (Shilts covered the AIDS epidemic as a reporter for the San Francisco Chronicle beginning in 1982. The Chronicle was the only newspaper to have a dedicated reporter on this story.)

Let us take the politics first - and there is quite a bit of it here, too much to get into with this review, more than I ever realized (and I'm far from an expert). What was (and is) maddening is the reading about the politics behind the stalled funding in Washington. One comment I read - somewhere, maybe on Goodreads - said that you never realized what an asshole Reagan was until you read this book, and in my opinion, that is rather true. The promise of grant funding that never materialized, the miniscule amount dedicated to fighting AIDS, the indifference by so many people, including the President of the United States himself. Reagan didn't say anything publicly about a disease that, for years, was ravaging hundreds and then thousands of Americans people. He first uttered the word AIDS after 20,000 people in America had died. I find that absolutely unconscionable.

It is also fascinating to read about the political and cultural difference between New York and San Francisco, as concerns the epidemic.
"The vastly different political mechanics of San Francisco and New York ensured that few eastern gay leaders would launch any attacks on the officialdom. On the West Coast, gay political power was a grass-roots movement with mainstream politicians aware that their positions rested in part with their ability to please gay voters. In New York, gay power tended toward a top-down paradigm. Little evidence of a grass-roots movement existed, and gay political leaders thrived more on the favors of public officials." (pg. 340)
Throughout And the Band Played On, a common message repeats: with the exception of a handful of activists pushing for awareness and funding, the epidemic thrived on the apathy of those in the government and those in the general public. For years, nobody simply cared because this was a disease that happened to people who were expendable, who brought this upon themselves because of their lifestyle. Even three years into this epidemic, AIDS was still a non-issue.
"In the last weeks of 1983, newspapers were filled with year-in-review pieces. The Associated Press editors released their annual compilation of the year's top ten news stories. The terrorist bombing of the Marine headquarters in Beirut, in which 240 servicemen were killed, was voted the top story, followed by the downing of a South Korean airliner by Soviet jets, and the American invasion of Grenada. The year's top movies were Silkwood and The Big Chill, and nobody could talk enough about Michael Jackson's Moonwalking and Thriller, his huge comeback album. Although AIDS reporting had been the vogue earlier in the year, attention had now fully waned and nobody included the epidemic in a noteworthy benchmark for the year. 
Hidden away on back pages, therefore, was the story from Atlanta, reporting that as of December 19, 1983, the CDC reported 3,000 Americans now stricken with Acquired Immune Deficiency Syndrome; of these, 1,283 were dead." (pg. 400-401) 
The politics and the people were intertwined, as was evidenced in subcommittee hearings in August 1983.
"It was the people with AIDS who lent the first day of hearings the most poignant and sometimes humorous moments. Pneumocystis victim Roger Lyon from San Francisco pleaded, "I came here today with the hope that this administration would do everything possible, make every resource available -  there is no reason this disease cannot be conquered. We do not need infighting. This is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hop that my epitaph would not read that I died of red tape." (pg. 360)
And the Band Played On is very much about the people and the lives behind the ever-increasing cases and death counts. Shilts gives you their life stories, their backgrounds, takes you to their bedsides. You're with them and their partners as they take their last breath, utter their dying words. You meet the 71 year old grandmother who acquired AIDS from a blood transfusion received during a hip operation. You watch AIDS patient Morgan MacDonald being literally dumped in a hallway, after a nationally-renowned hospital chartered a plane for $14,000 to do exactly that.
"October 4, 1983 - San Francisco AIDS Foundation
The ambulance stopped on 10th Street, double-parked, and quickly bundled a young man onto a gurney. The ambulance driver and a second man carried the stretcher to the second-floor offices of the AIDS Foundation and set the stretcher on the floor. A nurse walking with them hurriedly put down a few plastic bags containing all the young man's possessions. Then, they turned and walked out, leaving the gaunt man lying on the floor. 
Confused staffers at the foundation pieced together his story. Since July, Morgan MacDonald had been treated at Shands Hospital in Gainesville, Florida for severe cryptosporidiosis, stemming from AIDS. When his state Medicaid benefits ran out, Shands, a private hospital, ordered MacDonald to leave by October 7. However, there was no place for the twenty-seven year old to go .... Shands Hospital doctors called San Francisco General Hospital to see whether that facility would accept MacDonald. The hospital said it did not accept acutely ill transfer patients and suggested he stay in Florida. Then the AIDS Foundation started getting calls from Florida, inquiring how a man with AIDS, who wanted to move to San Francisco, could get on the outpatient treatment program. 
Early Tuesday morning, Shands Hospital officials loaded MacDonald in a private Learjet air ambulance with a doctor and nurse. Although the plane cost $14,000 to charter, it was a cheaper alternative to the $100,000 in hospital bills an AIDS patient typically accumulated. The hospital also took $300 from money raised in the gay community to help AIDS patients and put it in the stricken man's pocket for spending money." (pg. 374) 
And the Band Played On is not an easy book to read. It's graphic and emotionally draining, and if you know someone who died of AIDS (especially during these early years, but really, during any year), this is particularly tough, brings back memories, and will sear your heart.

But it's a book that I feel is important for everyone to read because I believe that this is a critical part of our history that should never, ever be forgotten. Because it could so easily happen again.

Randy Shilts is an example of the type of journalist that we don't often see anymore. His work in And the Band Played On reflects an extraordinary degree of reporting quality, depth, ethics, and integrity that today's media desperately lacks. It should be required reading for anyone in any journalism program. We owe Randy Shilts an incredible debt of gratitude for his work.

Unfortunately, he's not alive to receive it. Randy Shilts died of AIDS in 1994, at the age of 42.

Today would have been his 61st birthday.

copyright 2012, Melissa, The Betty and Boo Chronicles If you are reading this on a blog or website other than The Betty and Boo Chronicles or via a feedreader, this content has been stolen and used without permission.


JoAnn said...

An excellent book and an amazing review... well done!!

Shieldmaiden96 said...

I volunteered at Action AIDS in Philadelphia after I graduated from college and I remember how during our training a woman had spoken to us about her experience and as we got to know her I was suddenly hit with the crushing reality that she was going to die. When I had a face and a name to put on AIDS, when it wasn't about politics and funding and legislation but about a smile and a laugh and a voice and a face that was going to be lost, it was almost too much to bear. One of the best and hardest experiences of my life.

Elizabeth said...


Love your header...great posts as well.

Silver's Reviews

Melissa said...

Thanks for following, Elizabeth ... and welcome.

Shieldmaiden96 - exactly.

JoAnn - thanks!

Sue Jackson said...

Wow, excellent and thorough review. This sounds like a very powerful book. I have been meaning to read it for years but haven't gotten to it.

The thing is...this IS happening again, but no one knows about it. The illness I have had for 10 years (Chronic Fatigue Syndrome, an immune system disorder) has been ignored and pushed aside by NIH and the CDC for decades, despite the fact that it devastates and destroys more than a million lives in the US alone. The minimal funding they give us (less than many other illnesses that are less serious and affect far fewer people) have been misappropriated - TWICE now.

Sorry to get off on a rant, but your review brought up so many parallels.

I really do need to get around to reading this book - thanks for the excellent review!


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Sue Jackson said...

Oh, I got so caught up in your review I forgot to say...

Congratulations on completing the Big Book Summer Challenge! I'm so glad you joined in the fun.


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