•3:08 PM
Fear. It's a scary emotion. Wait ... did I just say that I am afraid of fear?
As Aquired Immune Deficiency Syndrome (AIDS) emerged in North America, it actually initiated two epidemics. The first being the virus itself, of course. But secondly, it unleashed an epidemic of fear. Fear of the disease. Fear to come out of the closet and reveal your true sexual identity. Fear to advocate for research. Fear to stand up for what you know is right. Fear of the unknown.
You know, I wasn't going to read And the Band Played On by Randy Shilts because it is so long. And I wanted to stay on track to reach my goal. This book is six hundred and five pages long, written in the smallest typeset available to a publisher ... so it reads a little like this, instead of like this. Frankly, for old ladies like me, it was almost necessary to get out a magnifying glass. But then I remembered that part of this journey is to broaden my horizons and learn about things that I did not know. Although it has taken me eleven precious days, I am a much better person for having read this book. I gained knowledge and a better understanding of how the AIDS virus became a part of our lives. And, any fear I may have had, has been replaced with some anger and disbelief.
A long book necessitates a long post ... so, you might want to go grab a big mug of coffee, or a glass of wine before you continue - depending on what time of the day you are reading this. Don't worry ... I'm not going anywhere ... go ahead.
I have tried to think of a way to approach this book lightheartedly; but it is a serious subject. I don't want to make light of something that has affected so many people, in such a devastating way. I shed tears for those who suffered, and for those who had to stand by watching the ones they loved so much disappear before their very eyes. I shared the anger and frustration of the researchers who were so often restrained by a lack of financial resources, stemming from a lack of interest in a disease that afflicted a group of society nobody wanted to think about, let alone help. And, I was honestly left speechless (which is saying something) at times over the arrogance of a few individuals.
There was a sexual revolution, of sorts, in the gay community in the 1970s. Especially in San Francisco. Gay bars began popping up in certain districts around town; bathhouses quickly made their way into those same neighbourhoods. The baths were places where men, who previously had hid their sexual affiliation, could now embrace it and surrender themselves to it. Now, don't be mistaken ... the bathhouses became extremely important in the gay culture. They provided a place where like-minded men could get high and meet for anonymous sex. Men went there just for sex; this was not a place where gay men went to chat and get to know each other. There was absolutely no emotion involved in the acts that were shared at the bathhouses. It was just s-e-x, and because of these acts, a disease would be spread like wildfire. A disease that few would survive.
Remember ... the bubble? The one that my parents tried to create around me ... this is one of the reasons. I cannot understand the appeal of anonymous sex, in a barely lit room, with someone whose name you do not know nor do you care to know, with no feeling attached to said act. Of course, I'm a girl. And a control freak ... but still ... what were these guys thinking?
In his book, Randy Shilts explores the virus, AIDS ... it's emergence, the political handling of it, the science and research that has been involved, as well as the role of the media. But he also introduces us to some of the faces that have dealt with the disease ... some who have lead the fight to conquer it and somehow survived, and others who have died while trying to understand it.
When AIDS was first identified, it was thought to be like any other virus ... it would run its course and then die off. Very few believed that it would be the killer that it is. Since the beginning of this epidemic, 60 million people have contracted it (as of December 2009), and 25 million have died from AIDS-related causes. Two million people in 2008 alone. Two million people died as the result of one virus in one year. Approximately 33 million people live with the virus today. But back in the early 1980s, many did not care about it because it only seemed to affect that small portion of society that nobody wanted to talk about anyway. And do you know who refused to believe that the virus was dangerous? The gay community. They vehemently denied there was anything to worry about. There were many who thought that "the gay cancer" was created by the medical profession as a way of taking away the sexual freedoms so many gay men had just found. To this extent, they fought against the notion of the virus as a killer, continuing on as if nothing was wrong; but, in doing so, they made things so much worse. Spreading a disease that would probably take their lives and the lives of their friends.
The Public Health Commissioner in San Francisco wanted to close the bathhouses because he felt they posed a threat to public health. It was the gay community that fought against it. They fought so hard, that the Commissioner backed away, fearful of the ramifications for doing so. Don't forget that the White Night riots were still fresh in the memories of all San Franciscans. According to Shilts, the Commissioner had the interests of the gay community at heart; because men could visit a bathhouse and "exchange bodily fluids" (sometimes with as many as three different partners in one visit) without even speaking or seeing their partner's face, the baths were considered a public health risk. And the Commissioner felt that closing down these establishments would greatly reduce the number of men getting sick. I equate it with the seatbelt laws - when they were first enacted, people hated the idea. Although they were enacted in the best interest of public safety, most opposed the idea. The Public Health Commissioner wanted to help the gay community, but instead he was painted as a homophobe who wanted to take away the rights of gay men. It wouldn't be until page three hundred seventy-seven ... I mean, late 1983 that a new toned-down gay life-style was accepted. It became trendy to have a long-term partner, but by then the virus had been spread in unbelievable numbers.
The bathhouses in San Francisco were finally shut down in late 1984.
In June 1984, blood was drawn from two hundred fifteen men who visited a venereal disease clinic in San Francisco. It was found that sixty-five percent had (what would later be called) HIV - the blood evidence that an individual was infected with the virus, even though they may not show any outward signs of illness. Similar testing in New York City revealed that eighty-seven percent of intravenous drug users were infected; as well as seventy-two percent of hemophiliacs. Staggering results. And scary.
At a time when we, as a nation, should be looking toward our leaders to show us the way, they could not be found. The politicians did not want anything to do with this disease ... some were even arrogant enough to admit they just wanted to wait until it went away. But, of course, it didn't; and the United States government, who likes to remind everyone that they are on the cutting edge of everything, fell embarrassingly behind. Letting people die because they didn't want to acknowledge a certain segment of society. Research dollars came too late; politicians jumped on board the cause only after being forced to.
What the Commissioner of Public Health in San Francisco did not know, was that the disease he was trying to stop by closing the bathhouses had probably been running rampant for about five or six years by that time. Most of the men who frequented the baths were already infected. And those men infected with AIDS were unknowingly infecting the blood supply in the United States. The gay community was well-known for supporting blood donor clinics. For instance, one man who had been unknowingly infected with the AIDS virus donated blood at several different blood banks between 1981 and 1984. In fact, he had donated blood thirteen times. Eleven unfortunate recipients of blood transfusions received his blood. So, essentially, one man infected eleven people in one full swoop.
Now, obviously, the man who was infected did not knowingly try to infect others. In fact, he thought he was doing a public service. But, guess what? The government and the blood banks knew all about the threat to the blood supply long before it was made public. They took a "wait-and-see" attitude, and many people died because of their hesitancy to act. Because they would lose a lot of money. Severe hemophiliacs were receiving blood transfusions monthly - transfusions that would end up making them even sicker. By June 1984, ninety percent of this group would be infected with AIDS.
The scientists knew the devastation that was coming and they tried to warn the politicians more money was needed for further research. In fact, all the respected American researchers and scientists were very eager to focus time on learning more about the mysterious new virus in the early 1980s; but there was no money (or very little) allocated to AIDS research. One retrovirologist recalled that he couldn't even get approval to purchase two new doorknobs for his Lab. Nobody wanted to support them in their efforts. Shilts makes the United States government appear ridiculous because of its lack of support and funding into research. He makes them appear stupid.
And it seemed that the lack of interest was somehow related to everyone's discomfort in discussing homosexuality. Nobody wanted to discuss how the disease was spread amongst homosexual men. In contrast, consider how the discovery of cyanide in Tylenol capsules was handled in October 1982. Of course, I was just thirteen years old and do not remember anything about this, but maybe you do. Some poisoned Tylenol capsules were found in the Chicago area. Within days, the Food and Drug Administration (FDA) issued orders to remove the product from shelves across the country; Federal, State and local officials were immediately on hand to coordinate efforts, even in States thousand of miles from where the tampered boxes were discovered. No action was too extreme to save lives.
The FDA dedicated more than 1100 employees to test 1.5 million similar capsules searching for the cause of the contamination. Tylenol's parent company, Johnson And Johnson estimated its spending on the efforts to be about $100 million. One hundred million dollars. Within five weeks, the US Department of Health and Human Services issued new regulations on tamper-resistant packaging. In the end, after millions of dollars had been spent, the investigations yielded few results and it was concluded that the tampering was the result of some lone crazy person and affected only a few boxes of Tylenol.
Altogether, seven people died from the cyanide-laced capsules. In comparison, by October 1982, more than six hundred fifty Americans had been diagnosed with AIDS and of those cases, two hundred sixty were dead. There was no rush to spend money or coordinate efforts or issue regulations intended to save lives. It would be years before any real action was taken with regard to the disease nobody wanted to acknowledge. What a pity that AIDS didn't strike the general population sooner.
Just as a note of interest ... do you know how HIV got it's name? Shilts' story goes something like this ... A competition, of sorts, began between the French researchers and their counterparts in the United States - and the Americans were not going to lose. A French researcher actually discovered the virus that causes AIDS about one year before the Americans; they called it LAV (lymphadenopathy-associated virus). But because the Americans are strong and powerful, they managed to dissuade colleagues from taking the French research seriously. So, the French continued to build evidence to support their claim. In the meantime, an American scientist, Robert Gallo, made claim that he had in fact found the virus that caused AIDS, and he named it HTLV-III (human T-lymphotropic virus). Apparently, there is much prestige associated with discovering a virus and then having the opportunity to name it. So, after much ado, it was determined that they had both discovered the same thing; and for some reason, the French agreed to list the American retrovirologist as co-discoverer of the AIDS virus. But of course, they couldn't agree on what to call it; so an International committee intervened, and coined the term, Human Immunodeficiency Virus - HIV.
Do you want to know what changed everything? The attitude toward AIDS and the amount of attention it received? The diagnosis of Rock Hudson. A disease that could affect the rich and famous was now considered news-worthy and the crisis attracted the attention of many. As proof, on a sunny July day, just shortly after Hudson acknowledged having the disease, an AIDS fundraiser collected $630 000 in one afternoon. It was a record for an AIDS fundraising event.
As of 2007, just a little more than eighty thousand people were living with HIV or AIDS in Canada; the majority of the cases being men. amfAR reports that more than 7000 people in the world contract HIV every day. Of the 33 million people who live with AIDS today, about 2.1 million of them are under the age of fifteen.
It has become widely accepted among scientists that the AIDS virus was initially contracted through human contact with an infected (wild) chimpanzee somewhere in Africa; speculation assumes that a bushman was bitten or cut while hunting/butchering a chimpanzee. But did you know that it is believed this first infection could have occurred as early as 1914?
So what is the AIDS virus exactly? Human Immunodeficiency Virus is a retrovirus that infects cells of the human immune system, destroying or impairing their function. Infection with this virus results in the progressive depletion of the immune system, leading to 'immune deficiency'. The immune system is considered deficient when it can no longer fulfill its role of fighting off infection and diseases; and if I understand this correctly, once the immune system is deficient, the body becomes susceptible to any virus/bacteria/infection to which it is exposed - things that humans can usually fight off quite easily. I have read so much about this disease that I now feel comfortable throwing around terms like retrovirus, candidiasis, T-helpers, and Cryptosporidium.
Fear. I am back at that word. Fear is a powerful motivator. Sometimes it motivates people to turn and run in the opposite direction. And, sometimes it just renders people paralyzed. But other times, fear initiates action.
So, the only thing I am left to fear is not meeting my goal. But I am going to use my fear to motivate me into action ... to continue reading, that is.
Will I achieve my goal? Not if there are lots of books on the list with little itty-bitty typeset and that reach into six hundred pages. But I am not really afraid because while I may not read 100 books in 1 year, I am sure to reach another goal. The goal of educating myself, the goal of continuing to learn new things and coming to know about people I had not known before I started this challenge. People who are inspiring, and have made a difference. I am left thinking about the people like Bill Kraus and Gary Walsh and Larry Kramer. And, of course, Randy Shilts. Hey ... you know what? I just smiled when I thought of him.
To read more about Randy Shilts, click here.
Source: The recent statistics I have quoted were found at amfAR.
As Aquired Immune Deficiency Syndrome (AIDS) emerged in North America, it actually initiated two epidemics. The first being the virus itself, of course. But secondly, it unleashed an epidemic of fear. Fear of the disease. Fear to come out of the closet and reveal your true sexual identity. Fear to advocate for research. Fear to stand up for what you know is right. Fear of the unknown.
You know, I wasn't going to read And the Band Played On by Randy Shilts because it is so long. And I wanted to stay on track to reach my goal. This book is six hundred and five pages long, written in the smallest typeset available to a publisher ... so it reads a little like this, instead of like this. Frankly, for old ladies like me, it was almost necessary to get out a magnifying glass. But then I remembered that part of this journey is to broaden my horizons and learn about things that I did not know. Although it has taken me eleven precious days, I am a much better person for having read this book. I gained knowledge and a better understanding of how the AIDS virus became a part of our lives. And, any fear I may have had, has been replaced with some anger and disbelief.
A long book necessitates a long post ... so, you might want to go grab a big mug of coffee, or a glass of wine before you continue - depending on what time of the day you are reading this. Don't worry ... I'm not going anywhere ... go ahead.
I have tried to think of a way to approach this book lightheartedly; but it is a serious subject. I don't want to make light of something that has affected so many people, in such a devastating way. I shed tears for those who suffered, and for those who had to stand by watching the ones they loved so much disappear before their very eyes. I shared the anger and frustration of the researchers who were so often restrained by a lack of financial resources, stemming from a lack of interest in a disease that afflicted a group of society nobody wanted to think about, let alone help. And, I was honestly left speechless (which is saying something) at times over the arrogance of a few individuals.
There was a sexual revolution, of sorts, in the gay community in the 1970s. Especially in San Francisco. Gay bars began popping up in certain districts around town; bathhouses quickly made their way into those same neighbourhoods. The baths were places where men, who previously had hid their sexual affiliation, could now embrace it and surrender themselves to it. Now, don't be mistaken ... the bathhouses became extremely important in the gay culture. They provided a place where like-minded men could get high and meet for anonymous sex. Men went there just for sex; this was not a place where gay men went to chat and get to know each other. There was absolutely no emotion involved in the acts that were shared at the bathhouses. It was just s-e-x, and because of these acts, a disease would be spread like wildfire. A disease that few would survive.
Remember ... the bubble? The one that my parents tried to create around me ... this is one of the reasons. I cannot understand the appeal of anonymous sex, in a barely lit room, with someone whose name you do not know nor do you care to know, with no feeling attached to said act. Of course, I'm a girl. And a control freak ... but still ... what were these guys thinking?
In his book, Randy Shilts explores the virus, AIDS ... it's emergence, the political handling of it, the science and research that has been involved, as well as the role of the media. But he also introduces us to some of the faces that have dealt with the disease ... some who have lead the fight to conquer it and somehow survived, and others who have died while trying to understand it.
When AIDS was first identified, it was thought to be like any other virus ... it would run its course and then die off. Very few believed that it would be the killer that it is. Since the beginning of this epidemic, 60 million people have contracted it (as of December 2009), and 25 million have died from AIDS-related causes. Two million people in 2008 alone. Two million people died as the result of one virus in one year. Approximately 33 million people live with the virus today. But back in the early 1980s, many did not care about it because it only seemed to affect that small portion of society that nobody wanted to talk about anyway. And do you know who refused to believe that the virus was dangerous? The gay community. They vehemently denied there was anything to worry about. There were many who thought that "the gay cancer" was created by the medical profession as a way of taking away the sexual freedoms so many gay men had just found. To this extent, they fought against the notion of the virus as a killer, continuing on as if nothing was wrong; but, in doing so, they made things so much worse. Spreading a disease that would probably take their lives and the lives of their friends.
The Public Health Commissioner in San Francisco wanted to close the bathhouses because he felt they posed a threat to public health. It was the gay community that fought against it. They fought so hard, that the Commissioner backed away, fearful of the ramifications for doing so. Don't forget that the White Night riots were still fresh in the memories of all San Franciscans. According to Shilts, the Commissioner had the interests of the gay community at heart; because men could visit a bathhouse and "exchange bodily fluids" (sometimes with as many as three different partners in one visit) without even speaking or seeing their partner's face, the baths were considered a public health risk. And the Commissioner felt that closing down these establishments would greatly reduce the number of men getting sick. I equate it with the seatbelt laws - when they were first enacted, people hated the idea. Although they were enacted in the best interest of public safety, most opposed the idea. The Public Health Commissioner wanted to help the gay community, but instead he was painted as a homophobe who wanted to take away the rights of gay men. It wouldn't be until page three hundred seventy-seven ... I mean, late 1983 that a new toned-down gay life-style was accepted. It became trendy to have a long-term partner, but by then the virus had been spread in unbelievable numbers.
The bathhouses in San Francisco were finally shut down in late 1984.
In June 1984, blood was drawn from two hundred fifteen men who visited a venereal disease clinic in San Francisco. It was found that sixty-five percent had (what would later be called) HIV - the blood evidence that an individual was infected with the virus, even though they may not show any outward signs of illness. Similar testing in New York City revealed that eighty-seven percent of intravenous drug users were infected; as well as seventy-two percent of hemophiliacs. Staggering results. And scary.
At a time when we, as a nation, should be looking toward our leaders to show us the way, they could not be found. The politicians did not want anything to do with this disease ... some were even arrogant enough to admit they just wanted to wait until it went away. But, of course, it didn't; and the United States government, who likes to remind everyone that they are on the cutting edge of everything, fell embarrassingly behind. Letting people die because they didn't want to acknowledge a certain segment of society. Research dollars came too late; politicians jumped on board the cause only after being forced to.
What the Commissioner of Public Health in San Francisco did not know, was that the disease he was trying to stop by closing the bathhouses had probably been running rampant for about five or six years by that time. Most of the men who frequented the baths were already infected. And those men infected with AIDS were unknowingly infecting the blood supply in the United States. The gay community was well-known for supporting blood donor clinics. For instance, one man who had been unknowingly infected with the AIDS virus donated blood at several different blood banks between 1981 and 1984. In fact, he had donated blood thirteen times. Eleven unfortunate recipients of blood transfusions received his blood. So, essentially, one man infected eleven people in one full swoop.
Now, obviously, the man who was infected did not knowingly try to infect others. In fact, he thought he was doing a public service. But, guess what? The government and the blood banks knew all about the threat to the blood supply long before it was made public. They took a "wait-and-see" attitude, and many people died because of their hesitancy to act. Because they would lose a lot of money. Severe hemophiliacs were receiving blood transfusions monthly - transfusions that would end up making them even sicker. By June 1984, ninety percent of this group would be infected with AIDS.
The scientists knew the devastation that was coming and they tried to warn the politicians more money was needed for further research. In fact, all the respected American researchers and scientists were very eager to focus time on learning more about the mysterious new virus in the early 1980s; but there was no money (or very little) allocated to AIDS research. One retrovirologist recalled that he couldn't even get approval to purchase two new doorknobs for his Lab. Nobody wanted to support them in their efforts. Shilts makes the United States government appear ridiculous because of its lack of support and funding into research. He makes them appear stupid.
And it seemed that the lack of interest was somehow related to everyone's discomfort in discussing homosexuality. Nobody wanted to discuss how the disease was spread amongst homosexual men. In contrast, consider how the discovery of cyanide in Tylenol capsules was handled in October 1982. Of course, I was just thirteen years old and do not remember anything about this, but maybe you do. Some poisoned Tylenol capsules were found in the Chicago area. Within days, the Food and Drug Administration (FDA) issued orders to remove the product from shelves across the country; Federal, State and local officials were immediately on hand to coordinate efforts, even in States thousand of miles from where the tampered boxes were discovered. No action was too extreme to save lives.
The FDA dedicated more than 1100 employees to test 1.5 million similar capsules searching for the cause of the contamination. Tylenol's parent company, Johnson And Johnson estimated its spending on the efforts to be about $100 million. One hundred million dollars. Within five weeks, the US Department of Health and Human Services issued new regulations on tamper-resistant packaging. In the end, after millions of dollars had been spent, the investigations yielded few results and it was concluded that the tampering was the result of some lone crazy person and affected only a few boxes of Tylenol.
Altogether, seven people died from the cyanide-laced capsules. In comparison, by October 1982, more than six hundred fifty Americans had been diagnosed with AIDS and of those cases, two hundred sixty were dead. There was no rush to spend money or coordinate efforts or issue regulations intended to save lives. It would be years before any real action was taken with regard to the disease nobody wanted to acknowledge. What a pity that AIDS didn't strike the general population sooner.
Just as a note of interest ... do you know how HIV got it's name? Shilts' story goes something like this ... A competition, of sorts, began between the French researchers and their counterparts in the United States - and the Americans were not going to lose. A French researcher actually discovered the virus that causes AIDS about one year before the Americans; they called it LAV (lymphadenopathy-associated virus). But because the Americans are strong and powerful, they managed to dissuade colleagues from taking the French research seriously. So, the French continued to build evidence to support their claim. In the meantime, an American scientist, Robert Gallo, made claim that he had in fact found the virus that caused AIDS, and he named it HTLV-III (human T-lymphotropic virus). Apparently, there is much prestige associated with discovering a virus and then having the opportunity to name it. So, after much ado, it was determined that they had both discovered the same thing; and for some reason, the French agreed to list the American retrovirologist as co-discoverer of the AIDS virus. But of course, they couldn't agree on what to call it; so an International committee intervened, and coined the term, Human Immunodeficiency Virus - HIV.
Do you want to know what changed everything? The attitude toward AIDS and the amount of attention it received? The diagnosis of Rock Hudson. A disease that could affect the rich and famous was now considered news-worthy and the crisis attracted the attention of many. As proof, on a sunny July day, just shortly after Hudson acknowledged having the disease, an AIDS fundraiser collected $630 000 in one afternoon. It was a record for an AIDS fundraising event.
As of 2007, just a little more than eighty thousand people were living with HIV or AIDS in Canada; the majority of the cases being men. amfAR reports that more than 7000 people in the world contract HIV every day. Of the 33 million people who live with AIDS today, about 2.1 million of them are under the age of fifteen.
It has become widely accepted among scientists that the AIDS virus was initially contracted through human contact with an infected (wild) chimpanzee somewhere in Africa; speculation assumes that a bushman was bitten or cut while hunting/butchering a chimpanzee. But did you know that it is believed this first infection could have occurred as early as 1914?
So what is the AIDS virus exactly? Human Immunodeficiency Virus is a retrovirus that infects cells of the human immune system, destroying or impairing their function. Infection with this virus results in the progressive depletion of the immune system, leading to 'immune deficiency'. The immune system is considered deficient when it can no longer fulfill its role of fighting off infection and diseases; and if I understand this correctly, once the immune system is deficient, the body becomes susceptible to any virus/bacteria/infection to which it is exposed - things that humans can usually fight off quite easily. I have read so much about this disease that I now feel comfortable throwing around terms like retrovirus, candidiasis, T-helpers, and Cryptosporidium.
Fear. I am back at that word. Fear is a powerful motivator. Sometimes it motivates people to turn and run in the opposite direction. And, sometimes it just renders people paralyzed. But other times, fear initiates action.
So, the only thing I am left to fear is not meeting my goal. But I am going to use my fear to motivate me into action ... to continue reading, that is.
Will I achieve my goal? Not if there are lots of books on the list with little itty-bitty typeset and that reach into six hundred pages. But I am not really afraid because while I may not read 100 books in 1 year, I am sure to reach another goal. The goal of educating myself, the goal of continuing to learn new things and coming to know about people I had not known before I started this challenge. People who are inspiring, and have made a difference. I am left thinking about the people like Bill Kraus and Gary Walsh and Larry Kramer. And, of course, Randy Shilts. Hey ... you know what? I just smiled when I thought of him.
To read more about Randy Shilts, click here.
Source: The recent statistics I have quoted were found at amfAR.
series - I'm sure you've heard of it, especially if you were once a little girl who grew up in Canada.