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4.49 AVERAGE
4.49 AVERAGE
challenging
emotional
informative
sad
dark
sad
slow-paced
challenging
informative
reflective
sad
medium-paced
A must read title in the queer and medical history canons.
challenging
dark
emotional
informative
reflective
sad
tense
slow-paced
This book is an impeccable resource. Thoroughly researched and wrought with emotion it successfully captures the reluctance of institutions to respond to an epidemic when a politically challenging group were the victims. As Shilts said in the book ’The new epidemic would rarely be dealt with as simply a medical problem’.
While I value deeply the knowledge that this book imparted I rarely enjoyed actually reading it. It took me a long time to finish because of the repetitive nature of the scenes (a few facts about a character, what they did on a particular day, and ending with a low tension trap foreshadowing what was to come). In addition to the length, the sheer number of characters, and amount of bureaucracy detailed. It felt as though parts 8 and 9 finished too abruptly which was an unsatisfying ending considering the slog that was the middle third of the book. It didn’t appear to have a narrative or be leading towards something, and relied on general knowledge of the AIDS crisis to create tension. However, the book was published in 1987 and a lot of the conclusions I was hoping for (number of people who died in the US from AIDS etc) wouldn’t be known until after the book was published and sadly, after Randy Shilts had died in 1994.
The unrelenting back and forth between applications for funding and denied applications for funding was difficult to read as it was dry and occupied a large part of the book. I do understand however that this was one of the major factors inhibiting the science that would prevent the deaths of gay people, and the frustration I felt in having yet another chapter on funding is minuscule in comparison to what it must have felt like as a scientist who understood that lives would end as a result of the lack of funding.
There also could have been more personal stories. There were some, but a lot of the book was focused on the political aspect. While there were many lines alluding to the loss of lives it lacked the empathetic response of reading about the victims which could have made the egregious inaction of the government more poignant. One story that particularly resonated with me was when Bill Kraus tried to get one particular victim who was diagnosed but otherwise healthy, to qualify for disability payments only to find out that he had died within months.
This book does a fantastic job of chronicling exactly why AIDS became the genocide it did and as of this time of writing 692,790 people in the US alone have died from AIDS-related diseases. Those early years were instrumental to building the gay community that I have grown up a part of, and this work is a heartfelt textbook on that period. I am privileged to be able to read it and not have to have lived it.
Things I Didn’t Previously Know about AIDS:
* It began in Africa, where it still rampages today. It made its way to Haiti after Belgium gave up the Congo as a colony due to forces overthrowing the government, there were no Congolese doctors (due to the colony not encouraging education in its subjects) so French speaking Haitians became doctors and then brought it back to the Caribbean with them. One immigrant in about 1969 brought it to the US. However, it started becoming widespread and identifiable in 1979 after the Bicentennial in New York where ships from all over the world came and mingled to celebrate. Two waves of the epidemic swept Europe - the first dating back at least five years to Africa (beginning with Graethe Rask a lesbian doctor who worked in Zaire), and the second, more recent, among gay men who had contacts with American homosexuals, usually in New York City.
* AIDS can infect the brain and central nervous system, many AIDS patients got symptoms of psychological stress and even dementia. This meant that the virus could cross the blood-brain barrier and any treatment would have to do the same, causing another hurdle for creating treatment, otherwise it could lurk in the brain and reinfect the blood.
* It opens the immune system up for diseases not previously found in humans like Cryptosporidium (a parasite normally found in the bowels of sheep), and others found in deer, birds, sheep and cats, as well as cancers that appeared all over the body, on the tongue, in the rectum, or the brain.
Quotes:
‘The numbers of AIDS cases measured the shame of the nation… The United States, the one nation with the knowledge, the resources and the institutions to respond to the epidemic, had failed. And it had failed because of ignorance and fear, prejudice and rejection. The story of the AIDS epidemic was simple; it was the story of bigotry and what it could do to a nation.’
‘The people for whom I will always bear special reverence are those who were suffering from AIDS and who gave some of their last hours for interviews, sometimes while they were on their deathbeds labouring for breath. When I’d ask why they’d take the time for this, most hoped that something they said would save someone else from suffering. If there is an act that better defines heroism, I have not seen it.’
Bill Kraus: ‘The problem lies not in evil personalities or traitorous acts, but rather in the political orientation which believes that an oppressed group gets what it needs by being careful not to offend the powerful. The problem lies in the desire to protect the little that we have gotten by not risking a fight for what we deserve. The problem lies in believing that what we have gotten is somehow a favour given by politicians rather than politicians’ recognition of what we have the political power to demand and to get.’
Selma Dritz (assistant director of communicable diseases at the San Francisco Department of Public Health) identified the potential for an epidemic due to the amount of venereal diseases being transmitted in the gay community with latency periods before visible symptoms emerged before 1980: ‘Too much is being transmitted. We’ve got all these diseases going unchecked. There are so many opportunities for transmissions that, if something new gets loose here, we’re going to have hell to pay.’
‘Don’t offend the gays and don’t inflame the homophobes. These were the twin horns on which the handling of this epidemic would be torn from the first day of the epidemic. Inspired by the best intentions, such arguments paved the road toward the destination good intentions inevitably lead.’
‘In 1982, at a time when gay people more than ever needed to be encouraged into relationships, they were told their partnerships were valueless by institutions that later scratched their heads and wondered why gays didn’t settle into relationships when it was so clear their lives were at stake.’
Representative Ted Weiss’ subcommittee’s hearing on AIDS looked into why there was no coordinated plan for epidemiology, treatment or basic research while Reagan’s budget planned a further $300,000 cut to AIDS funding. One victim’s speech was particularly moving:
‘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 hope that my epitaph would not read that I died of red tape’.
‘The brightest moments in the first five years of the AIDS epidemic tended to do little more than illuminate how truly dark the future would be’.
‘Bill Kraus walked at the front of the throng with other delegates and party officials. As the group strode toward downtown, Kraus thought back to the Gay Freedom Day Parade on that sunny afternoon in 1980. How different the goals and the future of the gay movement seemed now, Kraus thought, and the nagging question returned to him: How many of these people will be alive for the next presidential election?’
‘The uproar illuminated the profoundly heterosexual male bias that dominates the news business. After all, thousands of gay men had been infecting each other for years, but attempts to interest news organisations to pressure the city for an aggressive AIDS education campaign had yielded minimal interest. A single female prostitute however, was a different matter. She might infect a heterosexual man. That was someone who mattered; that was news.’
Other Facts:
* The discovery of cyanide in Tylenol capsules occurred in the same weeks of 1982 as researchers were beginning the Sisyphean quest of applying for funding: within days of the discovery the Food and Drug Administration issued orders removing the drug from store shelves across the country. Federal, State and local authorities were immediately on hand to coordinate efforts in states thousands of miles from where the tampered boxes appeared… Altogether seven people died from the cyanide laced capsules, meanwhile 260 people had already died from AIDS.
* Unsurprisingly, it took only one ill-researched editorial in 1983 to fuel the hysteria that would characterise the epidemic which stated that household contact could transmit AIDS. By this point scientists were quite sure of the mode of transmission but the article was published anyway. This led to policeman, firemen and doctors donning gloves and masks, and prison inmates going on hunger strikes because utensils may have been used by an AIDS sufferer.
* The blood banks (despite being warned of the risks of blood transfusions for transmitting AIDS in 1980) were using rhetoric that the risk was one in a million. This was incorrect, it didn’t take into account the rising number of transfusion recipients who were coming down with AIDS, or the fact that people will usually require three units of blood in a transfusion which increases the odds further. They also were calculating the odds in areas where there had been no reported cases of AIDS not areas like San Fran or NY. Gay people made up between 7-15% of blood donors and many were using donating as a way to satisfy themselves that they did not have AIDS, ’Thus, blood banks occasionally became the stages for gay men living out the psychodramas of denial’.
* Cancer clinics had to be shut down because they were treating patients with blood-derived drugs that were made with infected blood.
* Because of the touchy subject, AIDS spawned a new vernacular which aimed to avoid offending anyone and effectively allowed public health officials, politicians and activists to speak about the epidemic without conveying the gravity of the situation or any medical information. AIDS victims became ‘people with AIDS’, ‘promiscuous’ became ‘sexually active’ and ‘semen’ became ‘bodily fluids’.
* Because of the underfunding and the hysteria in 1983, CDC staffers were always on the phone with one or other health official, or delivering the same old reassurances to reporters. They complained that they spent more time controlling AIDS hysteria than controlling AIDS.
* One horrific incident in Seattle involved a gang roving around a local gay cruising spot and shouted invectives about ‘plague carrying faggots’ and ‘diseased queers’. One gang raped two men with a crowbar. Once arrested, one attacker told police ‘If we don’t kill these fags, they’ll kill us with their fucking AIDS disease’.
* Because of the publicity linking AIDS to Haiti, the Haitian government responded by going to the country’s only gay bar and jailing everyone.
* One man from Florida was literally flown to San Francisco and dumped by ambulance workers on the floor of the San Francisco AIDS Foundation because medical professionals were reluctant to provide care because they knew so little about AIDS. People were taking any opportunity within the law to avoid providing care.
* The new toned-down gay lifestyle of Alcoholics Anonymous, Trivial Pursuit and ‘Boy Scout’ sex which was a response to the fear of transmission had started as vogue in 1983; by the end of that year, it was a trend; in the year that followed it was a full-scale sociological phenomenon.
* The French Scientists at the Pasteur Institute found the retrovirus that caused AIDS a year before the US would take it seriously because an American scientist (Gallo) found it.
* Also, the CDC and the NCI were at war over funding and who should have the most responsibility with regard to research that they were not sharing information and trying to publish their own works.
* One lead AIDS activity officer at the CDC said to Larry Kramer ‘Why don’t you guys get married?…If you guys had been married to women, this never would have happened’.
* Gaetan Dugas is mentioned as patient zero but he likely isn’t. He is one of the first few identifiable AIDS cases and he contributed significantly to its early spread due to his work as a flight attendant and his continued, conscious sex at bathhouses. ‘At one time, Gaetan had been what every man wanted from gay life; by the time he died, he had become what every man feared’.
* The Reagan administration pointed out that the mystery of the AIDS epidemic was solved much faster than for any comparable disease. This is true. However, it ignores the fact that did not emerge in an earlier era and it was not a difficult virus to find. The French took all of three weeks to discover LAV and had published their first paper on it within four months. Seven or eight months into the research process they had enough evidence to assert they had found the cause of AIDS by 1983. Most CDC researchers privately believed that if the NCI had begun serious laboratory efforts in 1981, the virus could have been detected by 1982 , before it had made its vast penetration into American life. ‘The discovery of the AIDS agent ultimately was not a contest for accolades but a race against time. Once again, time, the true adversary, had won’.
* One of the most enduring images from the AIDS-stricken gay community in San Fran was when the bathhouses were finally closed and the Sutro baths held a three-day farewell orgy to nostalgically recall the carefree days. The festivities climaxed when five people who were losing their jobs because of the bathhouse closure lined up on stage, stood over a barbecue and burned AIDS brochures. ‘If we can’t pass them out, we might as well burn them.’
* One thing I hadn’t thought about once the antibody test had been developed is the implication it would have for gay people’s confidentiality. ‘Paul Popham, president of the Gay Men’s Health Crisis, moved uncomfortably in his chair as when he heard the enthusiastic support for antibody testing. The antibody assay, he, knew, could be used in effect as a test for sexual orientation. He thought about new estimates that that typical AIDS patient needed $100,000 in medical care, and wondered what insurers might do once they got this test. ‘If the insurance industry can find relief from these enormous expenditures, it will.’ Popham said, voicing concern that no gay man would be able to get an insurance policy once the test became available. Other gay leaders cited concerns with employment and confidentiality. If test results were easily accessible, people with antibodies could be subject to a wide array of discriminatory moves.
* Michael Foucault dies from AIDS in 1984 but although numbers of deaths were increasing the obituaries were not listing the cause. The Native reported that Foucault died of ‘an infection that attacked his central nervous system’. Only the most knowledgeable of obituary readers could detect the presence of this epidemic in the death notices.
* Europe acted faster than the U.S and put AIDS on the venereal disease list which meant that, like Syphilis and Gonorrhoea, it was illegal to engage in sexual activity if you had it.
* In 1985 it was protocol for doctors to call the hospitals and refer their patients with AIDS however, doctors were not taking anymore AIDS cases and so in an attempt to circumvent the protocol they were waiting for hours in emergency. There was one AIDS sufferer who died while waiting for a room at a Manhattan hospital.
* The AIDS policy in New York was under the sole instruction of the Health Commissioner David Sencer. He presided over the Tuskegee experiment, wherein he left a group of poor, Southern blacks with Syphilis untreated so he could examine the long-term effects, and then presided over the Swine Flu epidemic and launched a flawed vaccine which killed more people than the flu.
* When education campaigns began in earnest only one television station would air the APLA public service announcement on AIDS. All other television stations in the LA area refused, citing considerations of taste. It became something of a joke in AIDS circles that the epidemic would mark the first time that homosexuals died from lack of good taste.
* The Administration kept saying that AIDS was the ‘number one health priority’ but only giving the scientific institutes token amounts of money that wouldn’t even cover necessary equipment let alone research, and saying if they needed more money they could divert it from other areas. Money was only given once Representative Waxman threatened to subpoena the documentation of funds.
Two events altered the trajectory of the epidemic:
1. Rock Hudson’s diagnosis and confession, the quintessential American masculine archetype made a victim out of someone whom America cared; and
2. The Surgen General Koop’s October 1986 report. Koop was an anti-abortion, conservative christian who released a repot without running it past the White House. He said AIDS education should begin at the earliest possible age for children, widespread use of condoms should be encouraged, and that antibody testing should occur outside blood banks and results should be confidential. He became the ‘scientific Bruce Springsteen’ and although his report was not timely (27,000 were dead or dying by this point) it got mainstream America onboard.
* By 1986 AIDS was on every continent except Antarctica. By 1987 the only country without a coordinated education campaign was the United States.
* By the time Reagan had delivered his first speech on the epidemic, 36,058 Americans had been diagnosed with the disease and 20,849 had died. In his speech he didn’t mention the word ‘gay’ or the fact that it was homosexuals who had done so much of the work in fighting the epidemic for all the years Reagan ignored it.
* The comparisons to WWII were confronting and also scarily accurate:
* When Larry Kramer went to the famous death camp Dachau in Germany which opened in 1933 only a few months after Hitler assumed power when the war started for the US in 1941. ‘Where the fuck was everybody for 8 years?’ he wanted to shout. ‘They were killing Jews, Catholics and gays for eight years and nobody did a thing.’ In an instant, his fury turned to ice. He knew exactly how the Nazis could kill for 8 years without doing anything. Nobody cared. That was what was happening with AIDS. People were dying and nobody cared.’
* ‘Cleve periodically called his mother in Arizona to empty his heart, he called her during January too, to tell her about the death of his old boyfriend, Felix. Gently, Marion Jones began talking about the young men with whom she had graduated from high-school over forty years before, during the darkest times of WWII. ‘All the boys I knew went off to war and most of them didn’t come back,’ she said. ‘The one’s who did survive were damaged. That must be what it’s like for you.’
Australia-specific Facts:
* The Medical Journal of Australia editorialised ‘Perhaps we’ve needed a situation like this to show us what we have known all along - depravity kills’.
* The Queensland heath Minister in 1984 refused to even walk into a room where an openly gay man was present. Australia was the hotspot for AIDS hysteria in 1984 and Hawke issued a national call for female blood donors.
While I value deeply the knowledge that this book imparted I rarely enjoyed actually reading it. It took me a long time to finish because of the repetitive nature of the scenes (a few facts about a character, what they did on a particular day, and ending with a low tension trap foreshadowing what was to come). In addition to the length, the sheer number of characters, and amount of bureaucracy detailed. It felt as though parts 8 and 9 finished too abruptly which was an unsatisfying ending considering the slog that was the middle third of the book. It didn’t appear to have a narrative or be leading towards something, and relied on general knowledge of the AIDS crisis to create tension. However, the book was published in 1987 and a lot of the conclusions I was hoping for (number of people who died in the US from AIDS etc) wouldn’t be known until after the book was published and sadly, after Randy Shilts had died in 1994.
The unrelenting back and forth between applications for funding and denied applications for funding was difficult to read as it was dry and occupied a large part of the book. I do understand however that this was one of the major factors inhibiting the science that would prevent the deaths of gay people, and the frustration I felt in having yet another chapter on funding is minuscule in comparison to what it must have felt like as a scientist who understood that lives would end as a result of the lack of funding.
There also could have been more personal stories. There were some, but a lot of the book was focused on the political aspect. While there were many lines alluding to the loss of lives it lacked the empathetic response of reading about the victims which could have made the egregious inaction of the government more poignant. One story that particularly resonated with me was when Bill Kraus tried to get one particular victim who was diagnosed but otherwise healthy, to qualify for disability payments only to find out that he had died within months.
This book does a fantastic job of chronicling exactly why AIDS became the genocide it did and as of this time of writing 692,790 people in the US alone have died from AIDS-related diseases. Those early years were instrumental to building the gay community that I have grown up a part of, and this work is a heartfelt textbook on that period. I am privileged to be able to read it and not have to have lived it.
Things I Didn’t Previously Know about AIDS:
* It began in Africa, where it still rampages today. It made its way to Haiti after Belgium gave up the Congo as a colony due to forces overthrowing the government, there were no Congolese doctors (due to the colony not encouraging education in its subjects) so French speaking Haitians became doctors and then brought it back to the Caribbean with them. One immigrant in about 1969 brought it to the US. However, it started becoming widespread and identifiable in 1979 after the Bicentennial in New York where ships from all over the world came and mingled to celebrate. Two waves of the epidemic swept Europe - the first dating back at least five years to Africa (beginning with Graethe Rask a lesbian doctor who worked in Zaire), and the second, more recent, among gay men who had contacts with American homosexuals, usually in New York City.
* AIDS can infect the brain and central nervous system, many AIDS patients got symptoms of psychological stress and even dementia. This meant that the virus could cross the blood-brain barrier and any treatment would have to do the same, causing another hurdle for creating treatment, otherwise it could lurk in the brain and reinfect the blood.
* It opens the immune system up for diseases not previously found in humans like Cryptosporidium (a parasite normally found in the bowels of sheep), and others found in deer, birds, sheep and cats, as well as cancers that appeared all over the body, on the tongue, in the rectum, or the brain.
Quotes:
‘The numbers of AIDS cases measured the shame of the nation… The United States, the one nation with the knowledge, the resources and the institutions to respond to the epidemic, had failed. And it had failed because of ignorance and fear, prejudice and rejection. The story of the AIDS epidemic was simple; it was the story of bigotry and what it could do to a nation.’
‘The people for whom I will always bear special reverence are those who were suffering from AIDS and who gave some of their last hours for interviews, sometimes while they were on their deathbeds labouring for breath. When I’d ask why they’d take the time for this, most hoped that something they said would save someone else from suffering. If there is an act that better defines heroism, I have not seen it.’
Bill Kraus: ‘The problem lies not in evil personalities or traitorous acts, but rather in the political orientation which believes that an oppressed group gets what it needs by being careful not to offend the powerful. The problem lies in the desire to protect the little that we have gotten by not risking a fight for what we deserve. The problem lies in believing that what we have gotten is somehow a favour given by politicians rather than politicians’ recognition of what we have the political power to demand and to get.’
Selma Dritz (assistant director of communicable diseases at the San Francisco Department of Public Health) identified the potential for an epidemic due to the amount of venereal diseases being transmitted in the gay community with latency periods before visible symptoms emerged before 1980: ‘Too much is being transmitted. We’ve got all these diseases going unchecked. There are so many opportunities for transmissions that, if something new gets loose here, we’re going to have hell to pay.’
‘Don’t offend the gays and don’t inflame the homophobes. These were the twin horns on which the handling of this epidemic would be torn from the first day of the epidemic. Inspired by the best intentions, such arguments paved the road toward the destination good intentions inevitably lead.’
‘In 1982, at a time when gay people more than ever needed to be encouraged into relationships, they were told their partnerships were valueless by institutions that later scratched their heads and wondered why gays didn’t settle into relationships when it was so clear their lives were at stake.’
Representative Ted Weiss’ subcommittee’s hearing on AIDS looked into why there was no coordinated plan for epidemiology, treatment or basic research while Reagan’s budget planned a further $300,000 cut to AIDS funding. One victim’s speech was particularly moving:
‘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 hope that my epitaph would not read that I died of red tape’.
‘The brightest moments in the first five years of the AIDS epidemic tended to do little more than illuminate how truly dark the future would be’.
‘Bill Kraus walked at the front of the throng with other delegates and party officials. As the group strode toward downtown, Kraus thought back to the Gay Freedom Day Parade on that sunny afternoon in 1980. How different the goals and the future of the gay movement seemed now, Kraus thought, and the nagging question returned to him: How many of these people will be alive for the next presidential election?’
‘The uproar illuminated the profoundly heterosexual male bias that dominates the news business. After all, thousands of gay men had been infecting each other for years, but attempts to interest news organisations to pressure the city for an aggressive AIDS education campaign had yielded minimal interest. A single female prostitute however, was a different matter. She might infect a heterosexual man. That was someone who mattered; that was news.’
Other Facts:
* The discovery of cyanide in Tylenol capsules occurred in the same weeks of 1982 as researchers were beginning the Sisyphean quest of applying for funding: within days of the discovery the Food and Drug Administration issued orders removing the drug from store shelves across the country. Federal, State and local authorities were immediately on hand to coordinate efforts in states thousands of miles from where the tampered boxes appeared… Altogether seven people died from the cyanide laced capsules, meanwhile 260 people had already died from AIDS.
* Unsurprisingly, it took only one ill-researched editorial in 1983 to fuel the hysteria that would characterise the epidemic which stated that household contact could transmit AIDS. By this point scientists were quite sure of the mode of transmission but the article was published anyway. This led to policeman, firemen and doctors donning gloves and masks, and prison inmates going on hunger strikes because utensils may have been used by an AIDS sufferer.
* The blood banks (despite being warned of the risks of blood transfusions for transmitting AIDS in 1980) were using rhetoric that the risk was one in a million. This was incorrect, it didn’t take into account the rising number of transfusion recipients who were coming down with AIDS, or the fact that people will usually require three units of blood in a transfusion which increases the odds further. They also were calculating the odds in areas where there had been no reported cases of AIDS not areas like San Fran or NY. Gay people made up between 7-15% of blood donors and many were using donating as a way to satisfy themselves that they did not have AIDS, ’Thus, blood banks occasionally became the stages for gay men living out the psychodramas of denial’.
* Cancer clinics had to be shut down because they were treating patients with blood-derived drugs that were made with infected blood.
* Because of the touchy subject, AIDS spawned a new vernacular which aimed to avoid offending anyone and effectively allowed public health officials, politicians and activists to speak about the epidemic without conveying the gravity of the situation or any medical information. AIDS victims became ‘people with AIDS’, ‘promiscuous’ became ‘sexually active’ and ‘semen’ became ‘bodily fluids’.
* Because of the underfunding and the hysteria in 1983, CDC staffers were always on the phone with one or other health official, or delivering the same old reassurances to reporters. They complained that they spent more time controlling AIDS hysteria than controlling AIDS.
* One horrific incident in Seattle involved a gang roving around a local gay cruising spot and shouted invectives about ‘plague carrying faggots’ and ‘diseased queers’. One gang raped two men with a crowbar. Once arrested, one attacker told police ‘If we don’t kill these fags, they’ll kill us with their fucking AIDS disease’.
* Because of the publicity linking AIDS to Haiti, the Haitian government responded by going to the country’s only gay bar and jailing everyone.
* One man from Florida was literally flown to San Francisco and dumped by ambulance workers on the floor of the San Francisco AIDS Foundation because medical professionals were reluctant to provide care because they knew so little about AIDS. People were taking any opportunity within the law to avoid providing care.
* The new toned-down gay lifestyle of Alcoholics Anonymous, Trivial Pursuit and ‘Boy Scout’ sex which was a response to the fear of transmission had started as vogue in 1983; by the end of that year, it was a trend; in the year that followed it was a full-scale sociological phenomenon.
* The French Scientists at the Pasteur Institute found the retrovirus that caused AIDS a year before the US would take it seriously because an American scientist (Gallo) found it.
* Also, the CDC and the NCI were at war over funding and who should have the most responsibility with regard to research that they were not sharing information and trying to publish their own works.
* One lead AIDS activity officer at the CDC said to Larry Kramer ‘Why don’t you guys get married?…If you guys had been married to women, this never would have happened’.
* Gaetan Dugas is mentioned as patient zero but he likely isn’t. He is one of the first few identifiable AIDS cases and he contributed significantly to its early spread due to his work as a flight attendant and his continued, conscious sex at bathhouses. ‘At one time, Gaetan had been what every man wanted from gay life; by the time he died, he had become what every man feared’.
* The Reagan administration pointed out that the mystery of the AIDS epidemic was solved much faster than for any comparable disease. This is true. However, it ignores the fact that did not emerge in an earlier era and it was not a difficult virus to find. The French took all of three weeks to discover LAV and had published their first paper on it within four months. Seven or eight months into the research process they had enough evidence to assert they had found the cause of AIDS by 1983. Most CDC researchers privately believed that if the NCI had begun serious laboratory efforts in 1981, the virus could have been detected by 1982 , before it had made its vast penetration into American life. ‘The discovery of the AIDS agent ultimately was not a contest for accolades but a race against time. Once again, time, the true adversary, had won’.
* One of the most enduring images from the AIDS-stricken gay community in San Fran was when the bathhouses were finally closed and the Sutro baths held a three-day farewell orgy to nostalgically recall the carefree days. The festivities climaxed when five people who were losing their jobs because of the bathhouse closure lined up on stage, stood over a barbecue and burned AIDS brochures. ‘If we can’t pass them out, we might as well burn them.’
* One thing I hadn’t thought about once the antibody test had been developed is the implication it would have for gay people’s confidentiality. ‘Paul Popham, president of the Gay Men’s Health Crisis, moved uncomfortably in his chair as when he heard the enthusiastic support for antibody testing. The antibody assay, he, knew, could be used in effect as a test for sexual orientation. He thought about new estimates that that typical AIDS patient needed $100,000 in medical care, and wondered what insurers might do once they got this test. ‘If the insurance industry can find relief from these enormous expenditures, it will.’ Popham said, voicing concern that no gay man would be able to get an insurance policy once the test became available. Other gay leaders cited concerns with employment and confidentiality. If test results were easily accessible, people with antibodies could be subject to a wide array of discriminatory moves.
* Michael Foucault dies from AIDS in 1984 but although numbers of deaths were increasing the obituaries were not listing the cause. The Native reported that Foucault died of ‘an infection that attacked his central nervous system’. Only the most knowledgeable of obituary readers could detect the presence of this epidemic in the death notices.
* Europe acted faster than the U.S and put AIDS on the venereal disease list which meant that, like Syphilis and Gonorrhoea, it was illegal to engage in sexual activity if you had it.
* In 1985 it was protocol for doctors to call the hospitals and refer their patients with AIDS however, doctors were not taking anymore AIDS cases and so in an attempt to circumvent the protocol they were waiting for hours in emergency. There was one AIDS sufferer who died while waiting for a room at a Manhattan hospital.
* The AIDS policy in New York was under the sole instruction of the Health Commissioner David Sencer. He presided over the Tuskegee experiment, wherein he left a group of poor, Southern blacks with Syphilis untreated so he could examine the long-term effects, and then presided over the Swine Flu epidemic and launched a flawed vaccine which killed more people than the flu.
* When education campaigns began in earnest only one television station would air the APLA public service announcement on AIDS. All other television stations in the LA area refused, citing considerations of taste. It became something of a joke in AIDS circles that the epidemic would mark the first time that homosexuals died from lack of good taste.
* The Administration kept saying that AIDS was the ‘number one health priority’ but only giving the scientific institutes token amounts of money that wouldn’t even cover necessary equipment let alone research, and saying if they needed more money they could divert it from other areas. Money was only given once Representative Waxman threatened to subpoena the documentation of funds.
Two events altered the trajectory of the epidemic:
1. Rock Hudson’s diagnosis and confession, the quintessential American masculine archetype made a victim out of someone whom America cared; and
2. The Surgen General Koop’s October 1986 report. Koop was an anti-abortion, conservative christian who released a repot without running it past the White House. He said AIDS education should begin at the earliest possible age for children, widespread use of condoms should be encouraged, and that antibody testing should occur outside blood banks and results should be confidential. He became the ‘scientific Bruce Springsteen’ and although his report was not timely (27,000 were dead or dying by this point) it got mainstream America onboard.
* By 1986 AIDS was on every continent except Antarctica. By 1987 the only country without a coordinated education campaign was the United States.
* By the time Reagan had delivered his first speech on the epidemic, 36,058 Americans had been diagnosed with the disease and 20,849 had died. In his speech he didn’t mention the word ‘gay’ or the fact that it was homosexuals who had done so much of the work in fighting the epidemic for all the years Reagan ignored it.
* The comparisons to WWII were confronting and also scarily accurate:
* When Larry Kramer went to the famous death camp Dachau in Germany which opened in 1933 only a few months after Hitler assumed power when the war started for the US in 1941. ‘Where the fuck was everybody for 8 years?’ he wanted to shout. ‘They were killing Jews, Catholics and gays for eight years and nobody did a thing.’ In an instant, his fury turned to ice. He knew exactly how the Nazis could kill for 8 years without doing anything. Nobody cared. That was what was happening with AIDS. People were dying and nobody cared.’
* ‘Cleve periodically called his mother in Arizona to empty his heart, he called her during January too, to tell her about the death of his old boyfriend, Felix. Gently, Marion Jones began talking about the young men with whom she had graduated from high-school over forty years before, during the darkest times of WWII. ‘All the boys I knew went off to war and most of them didn’t come back,’ she said. ‘The one’s who did survive were damaged. That must be what it’s like for you.’
Australia-specific Facts:
* The Medical Journal of Australia editorialised ‘Perhaps we’ve needed a situation like this to show us what we have known all along - depravity kills’.
* The Queensland heath Minister in 1984 refused to even walk into a room where an openly gay man was present. Australia was the hotspot for AIDS hysteria in 1984 and Hawke issued a national call for female blood donors.
dark
informative
slow-paced
dark
emotional
informative
inspiring
reflective
sad
The first thing that struck me was how reading this book felt similar to reading something in a second language that you're starting to get more fluent in. All the new vocabulary of the last 2+ years is found in this story: contact tracing, monoclonal antibodies, geometric curves, Anthony Fauci etc. This was a frustrating read -- not because of the writing, which was compelling, but because I knew what was going to happen and how it all would end and that I would be heartbroken. This book is still very much worth anyone's time. I hoped that at least one of the people profiled might've at least survived the 1980s, but, well, no spoilers, I guess... Gary Walsh sounds like a true angel. May they all rest in peace. Reading this, after what has transpired in the past two years, has put into even sharper relief some uncomfortable truths about American culture and how we allegedly value human life (something we love to accuse other nations/cultures of not doing). But I will muse on those thoughts privately.