I don't know where to begin talking about "And the Band Played On" by Schiltz.
I've been wanting to read it since I had the unique opportunity to hear Dr. Paul Gallo speak 2 years ago at the University. Of course, I am only now beginning to grasp his role in the discovery of HIV and how he stood at the epicenter of an extraordinary time in medical science.
At the risk of sounding laughably naive, I never thought of how powerfully the politics of the time and society's value judgements facilitated the development of the AIDS epidemic. I hadn't considered the blatant discrimination displayed against gays by the lack of alarm and media coverage. How one of the first news stories to appear about the epidemic was only when a woman had contracted the disease...suddenly it was a story only when someone other than a homosexual man was sick. As I write this I shake my head at how stupid I sound. Of course politics and conservative beliefs played a huge role in the pathetic response by agencies like the CDC and the NIH. Of course. I just hadn't considered all these angles to the issue before.
But still, it boggles my mind. And it saddens me so deeply to learn how many lives could have been spared if only things had been handled more efficiently and more aggressively by people in power--from government agencies to gay leaders. I temper this statement only by saying that I know how easy it is to judge through the lens of the retrospectoscope.
And yet it is also enthralling to read about a time in medical science when clinicians and researchers were scrambling to put together this puzzle with seemingly random pieces. Some patients had toxoplasmosis, others had PCP, some thrush, many Kaposi's sarcoma...no wonder if took time for people to figure out this was one disease with so many faces. Even the concept of determining that it was an infectious disease...when many thought it came from a bad batch of 'poppers', inhaled nitrites.
I am just over half way through the book and already it has made me frustrated, angry, inspired, impressed and very, very sad. What would it have been like to be a nurse or doctor in San Fransisco in 1982 when we didn't know how the disease was transmitted? Let alone, what it would have been like to be a gay man in the same place at the same time? It is chilling to go there in one's mind.
I grew up knowing AIDS only as something famous people did fundraisers for, then as a rare disease I might encounter as a nurse, to a collection of the faces of AIDS patients I did care for. Then it was a complex subject I needed to memorize for the USMLE, and now to this...something I really know nothing about at all.
This book has certainly opened my eyes and heavied my heart.
I've been wanting to read it since I had the unique opportunity to hear Dr. Paul Gallo speak 2 years ago at the University. Of course, I am only now beginning to grasp his role in the discovery of HIV and how he stood at the epicenter of an extraordinary time in medical science.
At the risk of sounding laughably naive, I never thought of how powerfully the politics of the time and society's value judgements facilitated the development of the AIDS epidemic. I hadn't considered the blatant discrimination displayed against gays by the lack of alarm and media coverage. How one of the first news stories to appear about the epidemic was only when a woman had contracted the disease...suddenly it was a story only when someone other than a homosexual man was sick. As I write this I shake my head at how stupid I sound. Of course politics and conservative beliefs played a huge role in the pathetic response by agencies like the CDC and the NIH. Of course. I just hadn't considered all these angles to the issue before.
But still, it boggles my mind. And it saddens me so deeply to learn how many lives could have been spared if only things had been handled more efficiently and more aggressively by people in power--from government agencies to gay leaders. I temper this statement only by saying that I know how easy it is to judge through the lens of the retrospectoscope.
And yet it is also enthralling to read about a time in medical science when clinicians and researchers were scrambling to put together this puzzle with seemingly random pieces. Some patients had toxoplasmosis, others had PCP, some thrush, many Kaposi's sarcoma...no wonder if took time for people to figure out this was one disease with so many faces. Even the concept of determining that it was an infectious disease...when many thought it came from a bad batch of 'poppers', inhaled nitrites.
I am just over half way through the book and already it has made me frustrated, angry, inspired, impressed and very, very sad. What would it have been like to be a nurse or doctor in San Fransisco in 1982 when we didn't know how the disease was transmitted? Let alone, what it would have been like to be a gay man in the same place at the same time? It is chilling to go there in one's mind.
I grew up knowing AIDS only as something famous people did fundraisers for, then as a rare disease I might encounter as a nurse, to a collection of the faces of AIDS patients I did care for. Then it was a complex subject I needed to memorize for the USMLE, and now to this...something I really know nothing about at all.
This book has certainly opened my eyes and heavied my heart.
5 comments:
We just went through our HIV/AIDS material and one of our instructors was (still is, I guess) in the thick of the AIDS fiasco in the 80's here in San Francisco. He had much to share. He also mentioned this book, and even though I've heard about it before I'm definitely gonna dive in during Christmas break. Thanks for mentioning this.
I remember watching the movie (fabulous portrayal of Gallo by Alan Alda) in high school and weeping with outrage at the way the bureaucracy and prejudice inhibited medical and healthcare advancement.
I still feel a very visceral reaction when I think about it.
What it was like in 1980, working as a student at an STI clinic in California, was to wonder why all of the gay men had generalized lymphadenopathy with negative biopsies. And to ask a local ID specialist and be told, “I don’t know, but it’s happening in San Francisco too”. Or to work in an ER at a major trauma hospital in Los Angeles in 1982, where people were coming in with this disease which was as yet not defined without any screening test. And then be poked with needles inevitably while you were doing emergency resuscitations. Or to work in one of the first HIV clinics in northern California when AZT was first approved for compassionate use. Or to still be working in that clinic in 1991 when Magic Johnson “came out” with his diagnosis. And then to work in New York in another HIV clinic during some of the first trials of the protease inhibitors.
And now to be working with the younger generations to whom this is all ancient history, who do not appreciate what it means when a new and lethal disease first presents.
I'm glad you have the book as it is a timeless piece on a period in our country that was exciting and confusing and frustrating. While working as an RN in a Salt Lake City hospital in 1986 we had a young man admitted with Kaposi's. The staff was so unsure about how to handle him as he was our first HIV admit. The dietary staff left the trays on the floor outside the room so that the nurses, after full outfitting in isolation garb (yes, gown, gloves, mask) could walk in the room and bring him his meal. It was so sad. It always leaves me wondering what I am doing now in practice that will look ridiculous 25 years from now.
JLP--Wow. He must be a fascinating person to have discussions with! It is a very worthwhile read. I would even say, essential.
Kate--I am planning to watch the movie once I finish the book. I've definitely been very emotional and cried at different stages in the book.
PatK--It sounds like you need to write a book! What a perspective on the whole epidemic...
Mary--Sadly I've seen, in recent years even, HIV/AIDS patients treated horribly in emergency departments.
The wife of a patient once brought in brownies for the staff and some of the nurses refused to eat them because of 'where they came from'. I was appalled and very angry.
You're right, it does make one wonder what major changes to our practice will occur during our careers...what will seem ridiculous down the road...
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