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kwheeles's review
5.0
Detailed, disturbing and frustrating review of the US government's slow response to the AIDS epidemic. It serves to remind me how far we have come in acceptance of those outside the heteronormative orthodoxy in my own lifetime. But it also provides a gut-wrenching view of society's treatment of of marginalized groups. (It brings to mind the HBO series "Succession" using the term NRPI - 'no real people involved' as an untermenschen label.). Rock Hudson's illness brought a sea change as a victim that more people could identify with, and highlighted the lack of attention previously.
joeyreader313's review
5.0
This is a very painful, raw, honest accounting of what happened and (in many ways) what was PERMITTED to happen during the early days of the AIDS crisis... despite some of the criticism of this book (a bit narrow in its focus, its portrayal of the so-called “Patient 0”), I consider this to be required reading.
Tragically, the extent and severity of this pandemic could have largely been mitigated had it not been for the callous indifference, criminal neglect, grimy politics, hubris, incompetence, and bigotry on full display by virtually all responsible parties (with few exceptions).
The book adopts a chronological/narrative format, and eloquently describes a delineation most people living through the crisis at that time experienced in their lives that forced them to mark the period “before” and “after” the pandemic.
The sad truth is that this public health emergency was almost immediately identified in the US as a disease that only impacted gay people. This would ultimately doom our society and government’s response (and utter lack of response) to the outbreak from the start.
Outlined in this book are the abject failures of the organizations/institutions that were established to protect us:
• Scientific/medical institutions:
In the early stages, there was very little prestige amongst the scientific community for investigating a disease (let alone explore treatment/prevention options or a cure) that was believed to only impact gay people. The book describes a remarkable unwillingness amongst healthcare and medical professionals (doctors, nurses, virologists, immunologists, epidemiologists) to specialize in this area for a variety of factors: hospitals worried treating a “gay disease” was bad for business and that their reputation would suffer if they became known for specializing in “gay-centric” care. Medical and academic institutions worried about discouraging resident applications for the same reason. Some healthcare professionals even refused to treat AIDS patients.
Bitter politics between health agencies (the CDC, NIH, NCI, etc.) stood in the way of any meaningful/productive collaboration. It is clear that pride often got in the way. There were indefensible delays with making life-saving announcements, arguments over what to communicate as preventative measures to avoid infection, a prolonged and counterproductive battle over who should get credit for discovering/naming the virus, and politics over funding. All of which was appalling to read.
These institutions were also plagued by their own biases. No one at the time wanted to believe that AIDS was caused by an infectious agent or a new virus. Many initially pinned their hopes on it being caused by some contaminated recreational drug that only gay people used because this was the most convenient explanation. This resulted in a spectacular waste of very precious time. Similarly, no one had any personal interest in believing that the virus could be transmitted through blood. This was, of course, despite glaring evidence to the contrary. Blood banks in particular eagerly ignored all the warning signs, time and time again choosing to prioritize their own business/profits over human life.
There was also no clear leadership to guide and organize the vastly underfunded, understaffed, uncoordinated efforts of these separate organizations. These were groups that when they did work, worked in silos, and were beset by a childish, competitive rivalry. This lack of leadership produced a large quantity of seemingly useless task forces, committees and subcommittees that raised issues, but didn’t solve them.
Lack of scientific research and knowledge of what caused AIDS helped foster an environment of fear that exacerbated the crisis and ultimately led to more infections. The resulting hysteria cascaded to places like funeral parlors, schools, police/fire departments and the population at large. Perhaps most damaging, it would fuel an already well-established prejudice against gay people that would only worsen and endure.
• Media:
The media largely turned a blind eye to the crisis as it was developing, only later bothering to pursue stories that involved celebrities or heterosexuals. There was a clear and decided lack of interest; thousands of American deaths were simply not considered newsworthy as long as it was gay people who were the ones dying. This was a time when there was a reluctance to even utter the word “gay” in the public sphere. The “respectability” of the people suffering was on trial, and gay people were dying because of it.
The stories that made it into print or on broadcasts often were ineptly narrow in focus, biased in favor of portraying the heterosexual impact, or amplifying voices that wished to only provoke fear, or to further stigmatize gay people. The media seemingly contradicted itself by characterizing the illness as a “gay disease” while simultaneously only showing any interest in covering stories that impacted heterosexuals.
• Government:
Above all, we were betrayed by those sworn to protect, defend, and represent us in our own government. The virus was allowed to ravage the population without meaningful intervention/support. This was a shameful and brazen dereliction of duty, a complete and total failure of the government to fulfill its baseline obligations to its people.
This caused the crisis to be much worse than it needed to be—resulting in the senseless and preventable death of countless people.
It was a period marked by a dearth of leadership. The president at the time could not even be bothered to speak the word AIDS for years.
...
The response from the gay community was understandably not perfect. This book shares an honest view of this.
This was a community of people who were already vulnerable, and the target of relentless attacks and discrimination. There was therefore a sizeable contingent of sexually liberated gays, who refused to alter their behavior, (such as stop frequenting bathhouses) in defense of their hard-fought way of life. There was also infighting amongst the community for a variety of reasons. We are not a monolith. The community also understandably suffered from a clear mistrust of government and healthcare organizations. For example, there was a reluctance on the part of some in the community to submit to blood testing once a test for HIV was developed, at the time fearing the information could be used against them (for internment, discrimination in housing/employment, denial of insurance, etc.). This was an unfortunate and logical consequence of the discrimination gays endured.
Reflecting on my reading experience, I am most impacted by the stories that depict the best of the community that was on display during this difficult time. This is a story of the tenacity and bravery of a community, that was kicked in the teeth but chose to fight. There were so many gays that decided to stand up, abandon the closet, and fight to save their own lives when no one else could be bothered to care. These were heroic efforts at a time when there were NO public programs for people with AIDS. Gay people were left to organize for themselves-- providing their own education, hospice/care services, fundraising. They volunteered out of need and desperation because no one else did. Above all, they recognized the human impact from all the loss and allowed people to die with dignity and humanity, and support those suffering. The book includes a quote that rightly notes that gay liberation is all about the fight for us to love one another. This was an exemplification of our capacity to love one another and to take care of each other.
As the saying goes, it’s important to understand history (especially your own), so that it does not repeat itself.
There was so much needless suffering. So much gruesome, brutal awful death. I hope this crisis serves as a model for the future. Let AIDS be the textbook example for how NOT to respond to a health emergency. How NOT to lead.
Another popular saying is that you can learn a lot from a society based on how it treats its most vulnerable (the elderly, the sick, children, animals, the disadvantaged/ostracized).
Either you believe in a society where everyone has the right to live free from discrimination, threats, violence, suffering or not.
Either you are for a society that protects, values and defends ALL human life or not.
Those not up to the task are not fit to serve.
Tragically, the extent and severity of this pandemic could have largely been mitigated had it not been for the callous indifference, criminal neglect, grimy politics, hubris, incompetence, and bigotry on full display by virtually all responsible parties (with few exceptions).
The book adopts a chronological/narrative format, and eloquently describes a delineation most people living through the crisis at that time experienced in their lives that forced them to mark the period “before” and “after” the pandemic.
The sad truth is that this public health emergency was almost immediately identified in the US as a disease that only impacted gay people. This would ultimately doom our society and government’s response (and utter lack of response) to the outbreak from the start.
Outlined in this book are the abject failures of the organizations/institutions that were established to protect us:
• Scientific/medical institutions:
In the early stages, there was very little prestige amongst the scientific community for investigating a disease (let alone explore treatment/prevention options or a cure) that was believed to only impact gay people. The book describes a remarkable unwillingness amongst healthcare and medical professionals (doctors, nurses, virologists, immunologists, epidemiologists) to specialize in this area for a variety of factors: hospitals worried treating a “gay disease” was bad for business and that their reputation would suffer if they became known for specializing in “gay-centric” care. Medical and academic institutions worried about discouraging resident applications for the same reason. Some healthcare professionals even refused to treat AIDS patients.
Bitter politics between health agencies (the CDC, NIH, NCI, etc.) stood in the way of any meaningful/productive collaboration. It is clear that pride often got in the way. There were indefensible delays with making life-saving announcements, arguments over what to communicate as preventative measures to avoid infection, a prolonged and counterproductive battle over who should get credit for discovering/naming the virus, and politics over funding. All of which was appalling to read.
These institutions were also plagued by their own biases. No one at the time wanted to believe that AIDS was caused by an infectious agent or a new virus. Many initially pinned their hopes on it being caused by some contaminated recreational drug that only gay people used because this was the most convenient explanation. This resulted in a spectacular waste of very precious time. Similarly, no one had any personal interest in believing that the virus could be transmitted through blood. This was, of course, despite glaring evidence to the contrary. Blood banks in particular eagerly ignored all the warning signs, time and time again choosing to prioritize their own business/profits over human life.
There was also no clear leadership to guide and organize the vastly underfunded, understaffed, uncoordinated efforts of these separate organizations. These were groups that when they did work, worked in silos, and were beset by a childish, competitive rivalry. This lack of leadership produced a large quantity of seemingly useless task forces, committees and subcommittees that raised issues, but didn’t solve them.
Lack of scientific research and knowledge of what caused AIDS helped foster an environment of fear that exacerbated the crisis and ultimately led to more infections. The resulting hysteria cascaded to places like funeral parlors, schools, police/fire departments and the population at large. Perhaps most damaging, it would fuel an already well-established prejudice against gay people that would only worsen and endure.
• Media:
The media largely turned a blind eye to the crisis as it was developing, only later bothering to pursue stories that involved celebrities or heterosexuals. There was a clear and decided lack of interest; thousands of American deaths were simply not considered newsworthy as long as it was gay people who were the ones dying. This was a time when there was a reluctance to even utter the word “gay” in the public sphere. The “respectability” of the people suffering was on trial, and gay people were dying because of it.
The stories that made it into print or on broadcasts often were ineptly narrow in focus, biased in favor of portraying the heterosexual impact, or amplifying voices that wished to only provoke fear, or to further stigmatize gay people. The media seemingly contradicted itself by characterizing the illness as a “gay disease” while simultaneously only showing any interest in covering stories that impacted heterosexuals.
• Government:
Above all, we were betrayed by those sworn to protect, defend, and represent us in our own government. The virus was allowed to ravage the population without meaningful intervention/support. This was a shameful and brazen dereliction of duty, a complete and total failure of the government to fulfill its baseline obligations to its people.
This caused the crisis to be much worse than it needed to be—resulting in the senseless and preventable death of countless people.
It was a period marked by a dearth of leadership. The president at the time could not even be bothered to speak the word AIDS for years.
...
The response from the gay community was understandably not perfect. This book shares an honest view of this.
This was a community of people who were already vulnerable, and the target of relentless attacks and discrimination. There was therefore a sizeable contingent of sexually liberated gays, who refused to alter their behavior, (such as stop frequenting bathhouses) in defense of their hard-fought way of life. There was also infighting amongst the community for a variety of reasons. We are not a monolith. The community also understandably suffered from a clear mistrust of government and healthcare organizations. For example, there was a reluctance on the part of some in the community to submit to blood testing once a test for HIV was developed, at the time fearing the information could be used against them (for internment, discrimination in housing/employment, denial of insurance, etc.). This was an unfortunate and logical consequence of the discrimination gays endured.
Reflecting on my reading experience, I am most impacted by the stories that depict the best of the community that was on display during this difficult time. This is a story of the tenacity and bravery of a community, that was kicked in the teeth but chose to fight. There were so many gays that decided to stand up, abandon the closet, and fight to save their own lives when no one else could be bothered to care. These were heroic efforts at a time when there were NO public programs for people with AIDS. Gay people were left to organize for themselves-- providing their own education, hospice/care services, fundraising. They volunteered out of need and desperation because no one else did. Above all, they recognized the human impact from all the loss and allowed people to die with dignity and humanity, and support those suffering. The book includes a quote that rightly notes that gay liberation is all about the fight for us to love one another. This was an exemplification of our capacity to love one another and to take care of each other.
As the saying goes, it’s important to understand history (especially your own), so that it does not repeat itself.
There was so much needless suffering. So much gruesome, brutal awful death. I hope this crisis serves as a model for the future. Let AIDS be the textbook example for how NOT to respond to a health emergency. How NOT to lead.
Another popular saying is that you can learn a lot from a society based on how it treats its most vulnerable (the elderly, the sick, children, animals, the disadvantaged/ostracized).
Either you believe in a society where everyone has the right to live free from discrimination, threats, violence, suffering or not.
Either you are for a society that protects, values and defends ALL human life or not.
Those not up to the task are not fit to serve.
mfg1994's review
5.0
And the Band Played Om
An excellent analysis of the early years of the AIDS crisis. It is easily the most comprehensive book written on the disease to this day.
An excellent analysis of the early years of the AIDS crisis. It is easily the most comprehensive book written on the disease to this day.
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