AIDS History 101

[LordShiva]

Originally posted by MrFun


This is really an obtuse remark. Money by itself is not the solution; it is used toward resources and hiring more staff to conduct research, lab experiments, and tabulating data toward investigating any type of new bacterial or viral disease.

[MrFun]

Originally posted by Rufus T. Firefly


It's hard to be "grossly mistaken" when I qualify my assertion with "maybe," Sparky. In fact, it's technically impossible.

But on point: the Reagan Administration's inaction, after HIV was identified as an infectious disease, was inexcusable. But to complain about relative inaction before it was so identified is just Monday morning quarterbacking. You were, what, 5 years old when AIDS was identified? So you have no memory of these events, but some of us were adults and were following the story; hell, I can remember when they were calling it GRID instead of AIDS. It took a long time to even piece together the fact gay men were getting sick in the same way; then, again given the dispersion of cases, it took a long time to piece together that they were making each other sick. That was unfortunate, but reasonable; why should the government have thrown resources at a problem that, at first, didn't seem like a problem (as opposed to a series of isolated events) and, later, didn't seem like an epidemic (that is, didn't seem like it was a spreading infectious disease)? The benefit of hindsight is a wonderful thing, but that's all it is -- hindsight.

This is why Waxman's comment is so stupid. "if the same disease had appeared among Americans of Norwegian descent, or among tennis players, rather than gay males, the responses of both the government and the medical community would have been different." No, it wouldn't have. First, it would have taken forever to determine that individuals dispersed across the country all had similar symptoms; then, it would have taken a long time to put together that what they had in common was Norwegian ancestry or weekend games of tennis. And then it would have been an extraordinary leap to conclude that it was an infection, as opposed to something genetic or environmental, that was killing a bunch of people who seemed not to know each other and had only ancestry or a hobby in common.

I'm a great admirer of Shilts' book, but his polemics around the early days of the disease are ridiculous.

Even when you do not know what the disease is, you still notice that people were dying from some kind of new disease. When you have a new disease emerging, you don't ignore just because you do not know if it's environmental or if it's infectious. You should provide real, sufficient funding to the institutions that are responsible for investigating any new, emerging disease.

A few doctors and scientists by late 1981 had already begun theorizing that this was possibly a new, infectious disease attacking the immune system of victims. Of course, with lack of funding, they could not conduct thorough research to come to this conclusion much more quickly with solid, scientifically-proven evidence. This is hardly Monday morning quarter-backing; it just make sense, in interest of public health, to immediately carry out vigorous investigation of a new disease.

And you mention remembering about following the story about this new disease. WHAT story? The media collectively yawned in boredom with the new disease because it was only a "gay disease." Then, later, they engaged in periodic, brief, spasmatic coverage and then the stories would evaporate from the media until another time.

[Rufus T. Firefly]

Originally posted by MrFun
Even when you do not know what the disease is, you still notice that people were dying from some kind of new disease. When you have a new disease emerging, you don't ignore just because you do not know if it's environmental or if it's infectious. You should provide real, sufficient funding to the institutions that are responsible for investigating any new, emerging disease.

Wrong. When you don't know what the hell is going on -- and remember, in the period we're discussing it wasn't clear there was a disease -- you don't divert resources from other, more urgent problems.

And you mention remembering about following the story about this new disease. WHAT story? The media collectively yawned in boredom with the new disease because it was only a "gay disease." Then, later, they engaged in periodic, brief, spasmatic coverage and then the stories would evaporate from the media until another time.

Christ on a crutch, will you listen to yourself? Are you really surprised that there was only "brief, spasmatic (sic - the word is you're looking for is either 'sporadic' or 'spasmodic') coverage" of an undiagnosed disease? Do you have no sense of how the media works? Or do you just have no idea what the world was like waaaaaay back when, before the internet and 24-hour cable news cycles? I suspect it's the latter, which is pretty shabby given your pretenses to being a historian. So here's a clue: when the media consists of a half an hour of network news each night and a bunch of mostly second-rate newspapers; and when runaway inflation, an energy crisis, the Iranian Revolution, the civil war in Lebanon, and a new president who's promising to heat up the cold war are all among the front-burner media issues -- then, yeah, inexplicable medical phenomena are only going to be subject to brief, sporadic coverage. Duh.

[MrFun]

Originally posted by Rufus T. Firefly

Christ on a crutch, will you listen to yourself? Are you really surprised that there was only "brief, spasmatic (sic - the word is you're looking for is either 'sporadic' or 'spasmodic') coverage" of an undiagnosed disease? Do you have no sense of how the media works? Or do you just have no idea what the world was like waaaaaay back when, before the internet and 24-hour cable news cycles? I suspect it's the latter, which is pretty shabby given your pretenses to being a historian. So here's a clue: when the media consists of a half an hour of network news each night and a bunch of mostly second-rate newspapers; and when runaway inflation, an energy crisis, the Iranian Revolution, the civil war in Lebanon, and a new president who's promising to heat up the cold war are all among the front-burner media issues -- then, yeah, inexplicable medical phenomena are only going to be subject to brief, sporadic coverage. Duh.

And yet, the news gave nearly daily, constant coverage for about two months on Legionnaire's. More people died from the new unknown disease emerging, but the media lacked any real curiousity to seek out answers. The different format/technology of media in the 80s did not lead to lack of coverage for this new epidemic; you know as well as I do, why the coverage was strikingly different compared to other events.

[Rufus T. Firefly]

Originally posted by MrFun


And yet, the news gave nearly daily, constant coverage for about two months on Legionnaire's. More people died from the new unknown disease emerging, but the media lacked any real curiousity to seek out answers. The different format/technology of media in the 80s did not lead to lack of coverage for this new epidemic; you know as well as I do, why the coverage was strikingly different compared to other events.

First of all, there was not "daily, constant coverage for about two months on Legionnaire's." I defy you to go down to your local public library, go into the archives of the local paper (Quad City Times?), and find two straight months of coverage of Legionaire's disease. You won't.

Second, and I'm not sure why you can't grasp this, the two events were utterly different in their timing. Legionaire's hit a bunch of people, all in the same place, all at once. AIDS, as we've already discussed, was dispersed in time and space. Complaining that Legionaire's got higher-profile coverage than AIDS did even before the problem had been identified as a disease is like complaining that, in late 2004 and early 2005, Tsunami victims got more attention than victims of childhood obesity. The Tsunami, like the Legionaire's outbreak in Philadelphia, was an easily-identified and contained event; "sick gay men" was decidedly more nebulous, and makes for a poorer ongoing media story.

[Patroklos]

A few doctors and scientists by late 1981 had already begun theorizing that this was possibly a new, infectious disease

How many medical research centers think they are reseaching something new and amazing/horrifying right now? How many of them will turn out to be right?

Obviously each one should get a grant of 100bn dollars

[MrFun]

Originally posted by Rufus T. Firefly


First of all, there was not "daily, constant coverage for about two months on Legionnaire's." I defy you to go down to your local public library, go into the archives of the local paper (Quad City Times?), and find two straight months of coverage of Legionaire's disease. You won't.

Second, and I'm not sure why you can't grasp this, the two events were utterly different in their timing. Legionaire's hit a bunch of people, all in the same place, all at once. AIDS, as we've already discussed, was dispersed in time and space. Complaining that Legionaire's got higher-profile coverage than AIDS did even before the problem had been identified as a disease is like complaining that, in late 2004 and early 2005, Tsunami victims got more attention than victims of childhood obesity. The Tsunami, like the Legionaire's outbreak in Philadelphia, was an easily-identified and contained event; "sick gay men" was decidedly more nebulous, and makes for a poorer ongoing media story.

According to Randy Shilts, the coverage of Legionnaire's was much more extensive than coverage of the new immune deficiency virus (page 101):

"Everbody in the Kaposi's Sarcoma and Opportunistic Infections Task Force had figured that by now reporters would be crawling all over the story. Legionnaire's disease and toxic shock syndrome had, by this stage in their respective epidemics, warranted ALMOST DAILY front-page treatment, which in turn engendered the interest of members of Congress, who tickled loose more money for research."

[snoopy369]

MrFun, you realize you should really be critiquing the media for printing things they think will sell rather than things that are not as front-cover selling news, right?



Seriously though - this is really not a big surprise. Funding for things like AIDS ALWAYS takes a long time, because it is not obviously a public health problem. The fact that a few people thought so and were right is irrelevant; the folks funding these things are old, stodgy, conservative types, and even the people APPLYING for funding are mostly the same (the ones likely to receive quick funding, anyway); the process to getting funding is long and tends to support proposals that promise quick, clinically applicable results, over longer term or more theoretical proposals. (My GF is an immunology PhD student, which is give or take the group of people who would've been applying for this funding... she complains constantly over the funding process, as she'd rather it be less clinically applicable as well.)

In this case, from what I'm seeing (and I'm no expert in Legionairre's disease or AIDS), it sounds like you had the confluence of a 'popular' group getting media - and thus congressional - attention, and a quick-acting, reasonably easily understood disease, that fit in with what the establishment is used to seeing, and thus the old, stodgy, conservative folks were willing to fund it (with some congressional pressure undoubtedly). Kaposi's Sarcoma, however, did not appear to be infectious, was not clearly understood at all, and did not fit in with the normal templates; thus, any good proposals on it would require significant pre-research (to get enough of an idea of what it is to actually make a good proposal for what to DO about it) and even then would be considered inferior to proposals for actually developing quick, clinically applicable treatments.

It is certainly an unfortunate element of our medical research funding mechanism; but it is not specific to gay people (and these people are some of the best educated, and thus generally non-homophobic, people in the country, remember!). Certainly the media coverage probably was partially because of this, but the unclear epidimiology would have been a factor in that as well (and the longer time span of the disease).

[MrFun]

And to your point about the differences between Legionnaire's disease and AIDS; of course there were differences. But, you can still use both examples to contrast how differently the government responded in the interest of public health - they were both, even given their differences, public health issues/crises - and the AIDS crisis was far worse.

Another example of how the government could quickly and vigorously respond to any kind of public health crisis/emergency, was with the Tylenol scare. Below is an excerpt talking about that. (caps in quoted excerpt are mine)

And the Band Played On (page 191)
October 1982

"The discovery of cyanide in Tylenol capsules occurred in those same weeks of October 1982. The existence of the poisoned capsules, all found in the Chicago area, was first reported on October 1. THE NEW YORK TIMES WROTE A STORY ON THE TYLENOL SCARE EVERY DAY FOR THE ENTIRE MONTH OF OCTOBER. and produced twenty-three more pieces in the two months after that. The poisoning received comparable coverage in media across the country, INSPIRING AN IMMENSE GOVERNMENT EFFORT.

Within days of the discovery of what proved to be the only cyanide-laced capsules, 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. NO ACTION WAS TOO EXTREME AND NO EXPENSE TOO GREAT, THEY INSISTED, TO SAVE LIVES.

In the end, the MILLIONS OF DOLLARS FOR CDC Tylenol investigations yielded little beyond the probability that some lone crackpot had tampered with a few boxes of the pain reliever. Yet the crisis showed how the government could spring into action, issue warnings, change regulations, AND SPEND MONEY, LOTS OF MONEY, when they thought the lives of Americans were at stake.

Altogther, seven people died from the cyanide-laced capsules.

By comparison, 634 Americans had been stricken with AIDS by October 5, 1982. Of these, 260 were dead. There was no rush to spend money, mobilize publich health officials, or issue regulations that might save lives."


Of course, you will reply that the Tylenol scare was entirely different from AIDS -- the Tylenol scare obviously was not an epidemic. But then, you would miss the whole point here; the point is that in ANY type of public health crisis, the government has the resources to quickly respond. But that did not happen during the early AIDS epidemic.

[MrFun]

Originally posted by snoopy369
MrFun, you realize you should really be critiquing the media for printing things they think will sell rather than things that are not as front-cover selling news, right?



Seriously though - this is really not a big surprise. Funding for things like AIDS ALWAYS takes a long time, because it is not obviously a public health problem. The fact that a few people thought so and were right is irrelevant; the folks funding these things are old, stodgy, conservative types, and even the people APPLYING for funding are mostly the same (the ones likely to receive quick funding, anyway); the process to getting funding is long and tends to support proposals that promise quick, clinically applicable results, over longer term or more theoretical proposals. (My GF is an immunology PhD student, which is give or take the group of people who would've been applying for this funding... she complains constantly over the funding process, as she'd rather it be less clinically applicable as well.)

In this case, from what I'm seeing (and I'm no expert in Legionairre's disease or AIDS), it sounds like you had the confluence of a 'popular' group getting media - and thus congressional - attention, and a quick-acting, reasonably easily understood disease, that fit in with what the establishment is used to seeing, and thus the old, stodgy, conservative folks were willing to fund it (with some congressional pressure undoubtedly). Kaposi's Sarcoma, however, did not appear to be infectious, was not clearly understood at all, and did not fit in with the normal templates; thus, any good proposals on it would require significant pre-research (to get enough of an idea of what it is to actually make a good proposal for what to DO about it) and even then would be considered inferior to proposals for actually developing quick, clinically applicable treatments.

It is certainly an unfortunate element of our medical research funding mechanism; but it is not specific to gay people (and these people are some of the best educated, and thus generally non-homophobic, people in the country, remember!). Certainly the media coverage probably was partially because of this, but the unclear epidimiology would have been a factor in that as well (and the longer time span of the disease).

You provide a couple of good points, Snoopy in how the funding for research works. But in times of emergency with other crises, we've seen the government act more quickly - I think what you explained is how the system works when there is no public health emergency.

[snoopy369]

MrFun, you are missing the point; at the time, very few people thought AIDS was infectious, or an epidemic. Hindsight is 20/20, and there will always be some people who think anything; quoting the people who had a financial or career incentive in finding it as an epidemic is not useful.

What we SHOULD do, and have, actually, is address the ways in which we identify a potential epidemic. AIDS was not obviously an epidemic. It did not have the characteristics of one, as they currently understood it; it was spread across the country, small amounts in any one place, and because it was spread among people who did not have just a single partner, but generally had casual sex with people they didn't necessarily see again, it was not easy to track the disease - as well when you consider that it was hard to identify WHO had the disease (where is that 634 number from - is it the estimate from the time, or is it an after the fact determined number?) and there was a long delay in finding the disease (tests were not that accuarte, and certainly took time). Further, finding AIDS was not the same as finding HIV (which is the 634 number, by the way?) and there is the additional delay in HIV not presenting immediately.

I would suggest, for example, that far more people died of pancreatic cancer, lung cancer, breast cancer, colon cancer ... and the name 'sarcoma' indicates that is what they were concerned about - cancer. Cancer is, generally, not transmissible (only a few are contagious, ie HPV) and thus not considered to be a candidate for an epidemic (which REQUIRES transmissability).

Point us to when AIDS was truly identified as a transmissible disease - and by the scientific community, not just a small group - and look at the funding from that point. Before that, it is a question of our study of epidimiology, which is certainly far superior to the science in 1982...

[asleepathewheel]

Is it surprising that a disease that was first thought to be swine flu or something similar to spanish flu, thus potentially endangering the entire world would get more media attention than a handful of individuals scattered across the country with a similar rare type of cancer?

Frankly, if the two occurred simultaneously, I'd rather the focus be on preventing a killer flu outbreak.

[Ogie Oglethorpe]

Originally posted by MrFun
And to your point about the differences between Legionnaire's disease and AIDS; of course there were differences. But, you can still use both examples to contrast how differently the government responded in the interest of public health - they were both, even given their differences, public health issues/crises - and the AIDS crisis was far worse.

Another example of how the government could quickly and vigorously respond to any kind of public health crisis/emergency, was with the Tylenol scare. Below is an excerpt talking about that. (caps in quoted excerpt are mine)

And the Band Played On (page 191)
October 1982

"The discovery of cyanide in Tylenol capsules occurred in those same weeks of October 1982. The existence of the poisoned capsules, all found in the Chicago area, was first reported on October 1. THE NEW YORK TIMES WROTE A STORY ON THE TYLENOL SCARE EVERY DAY FOR THE ENTIRE MONTH OF OCTOBER. and produced twenty-three more pieces in the two months after that. The poisoning received comparable coverage in media across the country, INSPIRING AN IMMENSE GOVERNMENT EFFORT.

Within days of the discovery of what proved to be the only cyanide-laced capsules, 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. NO ACTION WAS TOO EXTREME AND NO EXPENSE TOO GREAT, THEY INSISTED, TO SAVE LIVES.

In the end, the MILLIONS OF DOLLARS FOR CDC Tylenol investigations yielded little beyond the probability that some lone crackpot had tampered with a few boxes of the pain reliever. Yet the crisis showed how the government could spring into action, issue warnings, change regulations, AND SPEND MONEY, LOTS OF MONEY, when they thought the lives of Americans were at stake.

Altogther, seven people died from the cyanide-laced capsules.

By comparison, 634 Americans had been stricken with AIDS by October 5, 1982. Of these, 260 were dead. There was no rush to spend money, mobilize publich health officials, or issue regulations that might save lives."


Of course, you will reply that the Tylenol scare was entirely different from AIDS -- the Tylenol scare obviously was not an epidemic. But then, you would miss the whole point here; the point is that in ANY type of public health crisis, the government has the resources to quickly respond. But that did not happen during the early AIDS epidemic.

My recollection of the tylenol/cyanide recall was that it was intitiated by Johnson & Johnson. The FDA had precious little to do with it other than to facilitate what J&J had already set out to do. In other words don't give too much stock to governmental quick action.

Afterwards it did of course lead to more stringent tamper proof packaging requirements.

[DrSpike]

Originally posted by MrFun


This is really an obtuse remark.

Really?

[MrFun]

Originally posted by snoopy369
MrFun, you are missing the point; at the time, very few people thought AIDS was infectious, or an epidemic. Hindsight is 20/20, and there will always be some people who think anything; quoting the people who had a financial or career incentive in finding it as an epidemic is not useful.

What we SHOULD do, and have, actually, is address the ways in which we identify a potential epidemic. AIDS was not obviously an epidemic. It did not have the characteristics of one, as they currently understood it; it was spread across the country, small amounts in any one place, and because it was spread among people who did not have just a single partner, but generally had casual sex with people they didn't necessarily see again, it was not easy to track the disease - as well when you consider that it was hard to identify WHO had the disease (where is that 634 number from - is it the estimate from the time, or is it an after the fact determined number?) and there was a long delay in finding the disease (tests were not that accuarte, and certainly took time). Further, finding AIDS was not the same as finding HIV (which is the 634 number, by the way?) and there is the additional delay in HIV not presenting immediately.

I would suggest, for example, that far more people died of pancreatic cancer, lung cancer, breast cancer, colon cancer ... and the name 'sarcoma' indicates that is what they were concerned about - cancer. Cancer is, generally, not transmissible (only a few are contagious, ie HPV) and thus not considered to be a candidate for an epidemic (which REQUIRES transmissability).

Point us to when AIDS was truly identified as a transmissible disease - and by the scientific community, not just a small group - and look at the funding from that point. Before that, it is a question of our study of epidimiology, which is certainly far superior to the science in 1982...

By 1983, hundreds of scientists, doctors, and community leaders were convinced that AIDS was an infectious disease. The research that would prove this beyond any doubt, with scientific evidence, came in 1984. Below is an excerpt from an online article by Dr. Gallo:

"To briefly revisit that period, some of the noteworthy advances are listed here. They include discovery of HIV (1983–84) [12-14]; convincing evidence that it was the cause of AIDS ('84) [15,18,19]; modes of transmission understood ('84–'85); genome sequenced ('85) [20-22]; most genes and proteins defined ('84–'85) though not all their functions[23-25]; main target cells CD4 T cells, macrophages, and brain microglial cells – elucidated [26,27]; key reagents produced and made available for involved scientists all over the world ('84–'85); genomic heterogeneity of HIV ('84) – including the innumerable microvariants within a single patient ('86–'88) [28,29], first practical life saving advance ('85); the blood test ('84)[30]; close monitoring of the epidemic for the first time, because of the wide availability of the blood test ('85); the SIV-monkey model ('85) [31,32]; the beginning of therapy – AZT ('85)[33]; and the beginning understanding of pathogenesis ('85)[34]."

Unless I'm mistakened, the research results in 1984 that revealed modes of transmissions of AIDS basically proved that it was an infectious disease.