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October 26, 2015 5:57 AM   Subscribe

The deadly legacy of HIV truthers

Wikipedia on HIV denialism:
In a 2010 article on conspiracy theories in science, Ted Goertzel lists HIV/AIDS denialism as an example where scientific findings are being disputed on irrational grounds. He describes proponents as relying on rhetoric, appeal to fairness, and the right to a dissenting opinion rather than on evidence. They frequently invoke the meme of a "courageous independent scientist resisting orthodoxy", invoking the name of persecuted physicist and astronomer Galileo Galilei. Regarding this comparison, Goertzel states:
...being a dissenter from orthodoxy is not difficult; the hard part is actually having a better theory. Publishing dissenting theories is important when they are backed by plausible evidence, but this does not mean giving critics 'equal time' to dissent from every finding by a mainstream scientist.

— Goertzel, 2010
posted by zarq (72 comments total) 20 users marked this as a favorite
 
I genuinely don't understand how the embers of denialism flared up again, given that it was debunked by HIV killing the people who swore it wouldn't kill them. Of course, I never got the "No, it's lifestyle!" argument after Ryan White died, either.
posted by Etrigan at 6:04 AM on October 26, 2015 [7 favorites]


One omission: the article doesn't mention Robert Root-Bernstein, the professor of physiology at Michigan State University whose HIV denialism was prominent in the late '80s-early 90's, and whose site claiming HIV is a myth is still online. (Am deliberately not linking to it.) Root-Bernstein was quoted as an expert in Spin magazine's 1994 article about Kimberly Bergalis, where his denialism and conspiracy theories are on full display.
posted by zarq at 6:07 AM on October 26, 2015 [1 favorite]


Spin magazine really promoted this, iirc
posted by thelonius at 6:21 AM on October 26, 2015 [3 favorites]


Ugh, Bob Guccione Jr was on the Marc Maron podcast awhile back and is **still** proud of his HIV reporting. And said if he was in charge of Spin today, he would try to get an article on "the other side" of the Bill Cosby story. And climate change...
posted by armacy at 6:29 AM on October 26, 2015 [1 favorite]


That's a dark subject line.

Bob Guccione Jr was on the Marc Maron podcast awhile back and is **still** proud of his HIV reporting

"reporting".
posted by Mezentian at 6:30 AM on October 26, 2015 [1 favorite]


I admit to being half-suckered by the HIV-deniers in the late 90s, since Duesberg was like, a real scientist at Berkeley and not a keyboard crank, and if he was skeptical, maybe there was something to it? And what was really compelling was the situation in Africa, where it seemed like the problem that needed fixing was obviously devastating poverty, and that we should be worrying about that instead of trying to get Mbeki to buy millions of pills. I was never totally convinced, but wanted to "teach the controversy". Really it was easy for someone of a non-conformist turn of mind to find this somewhat compelling. Not only was Duesberg a real scientist dude, but he had Karry Mullis, winner of the NOBEL PRIZE (not that that prevented Pauling from being a crank) helping lend him credibility. And AIDs was/is both so nebulous and so terrifying at the same time, seemingly perfectly aimed at marginalized, counter-cultural populations of people potentially sympathetic to anti-Establishment causes. Surely more nefarious conspirators were at work than mere evolutionary processes? But those were my teenage conspiracy theory years, fuelled by ISDN and isolation, which have now been supplanted by the much more sane (*yoink*) deep-left radicalism of my post-20s. I'm better now, thank dog. DAE Bernie Sanders is too centrist?

But what's really wild about this is the claim that the Stasi admitted to inventing and spreading the "CIA made HIV to kill gays and black people" myth! If you ever traffic in black-radical circles a bit, you'll find that people still believe this, and passionately. I wonder how much other wacky shit was a byproduct of Cold War disinformation campaigns.
posted by dis_integration at 6:32 AM on October 26, 2015 [14 favorites]




I admit to being half-suckered by the HIV-deniers in the late 90s, since Duesberg was like, a real scientist at Berkeley and not a keyboard crank, and if he was skeptical, maybe there was something to it?

It got the Foo Fighters too.

If only they'd been the Woo Fighters.
posted by leotrotsky at 7:12 AM on October 26, 2015 [8 favorites]


“Maggiore appeared in various media outlets after she refused to take medications while pregnant and breast-feeding her children,” said Smith. “She was in the media again when her daughter, Eliza Jane, died of AIDS.”

That woman makes me so incandescently angry I can barely express it in words. If there were ever a call for CPS to intervene, this would have been the case, but because the mom is a media-savvy public figure they likely steered clear.

I wonder if the dimmest glimmer of awareness or doubt ever filtered down to the rubber mallet attached to her brain stem that she killed her fucking child.

I doubt it.
posted by leotrotsky at 7:20 AM on October 26, 2015 [11 favorites]


Is Gavin de Becker still an HIV/AIDS denialist?
posted by zennie at 7:21 AM on October 26, 2015 [1 favorite]


In the UK, the Sunday Times ran a HIV/AIDS denialist campaign for quite a while. Of the many things to Rupert Murdoch's discredit, that's still one of the worst.
posted by Azara at 7:27 AM on October 26, 2015 [1 favorite]


I canceled my subscription to Harper's after they ran a pro-denialist piece in like 2008.
posted by OmieWise at 7:34 AM on October 26, 2015 [5 favorites]


“Maggiore appeared in various media outlets after she refused to take medications while pregnant and breast-feeding her children,” said Smith. “She was in the media again when her daughter, Eliza Jane, died of AIDS.”

For those experiencing déjà vu, this case was profiled in the introduction of Farhad Manjoo's True Enough.
posted by dr_dank at 7:41 AM on October 26, 2015 [1 favorite]


Is Gavin de Becker still an HIV/AIDS denialist?

Huh, I did not know that. Gift of Fear, indeed!
posted by OmieWise at 7:43 AM on October 26, 2015 [3 favorites]


At first blush HIV denialism seems to be a bit like anti-vaxxers, people whose superstitions and lack of scientific knowledge lead to death. But HIV is different, because it's new and because it's political. There really was a lot of room for scientific doubt in the 80s and early 90s; there was no consensus. And the same politics that lead AIDS activists to such anger against the CDC and other science/policy organizations led some of those activists to end up just ignoring all mainstream science.

It turns out they were wrong. HIV really is the cause of AIDS, and medicines that attack HIV stop AIDS. There's no more room for debate on that point. But looking back at the history of HIV denialism makes me feel just a tiny bit of sympathy for people who are skeptical of science. Or maybe it's the other way around, it just makes me trust the science all the more.
posted by Nelson at 8:13 AM on October 26, 2015 [4 favorites]


I want to say something about this but HIV/AIDS denialism makes me so angry I can't see straight.

I know too many names on too many memorials to have any reaction to these assholes that doesn't involve holding them down and slapping them until their eyes fall out.
posted by feckless fecal fear mongering at 8:24 AM on October 26, 2015 [6 favorites]


But what's really wild about this is the claim that the Stasi admitted to inventing and spreading the "CIA made HIV to kill gays and black people" myth! If you ever traffic in black-radical circles a bit, you'll find that people still believe this, and passionately. I wonder how much other wacky shit was a byproduct of Cold War disinformation campaigns.


The book Medical Apartheid really opened my eyes, and you really don't need to appeal to anything crazy to get why disenfranchised groups, including LGBT+ folks and African Americans, are skeptical of the medical establishment.

I mean, people talk about the Tuskegee Syphilis experiment like it was something unusual, or something that doesn't happen nowadays, but it wasn't, and still does. Look at where, say, Johns Hopkins is located; look at the population they're drawing on for experimental treatments.

The medical establishment isn't immune to systematic racism and oppression. This doesn't mean that they're sitting there, cackling and plotting to release HIV and AIDS on communities; just that the choices that are made about who to treat, and who to conduct research trials on, and what disease get priority, are skewed by biases. And the people who are affected are smart enough to pick up on that. Sometimes it comes out looking like "crazy conspiracy theories", but there's something very real and troubling at the heart. From the article:

At this time, Kovacev had been a gay rights activist for a dozen years, having moved to New York’s Christopher Street in the wake of the Stonewall riots. He’d survived protests, clashes with the police, and “brutal” treatment from a homophobic medical establishment that treated him “like a pariah” when he sought treatment for anal warts. After all of this, plus Watergate and Vietnam, said Kovacev, “how could you trust anything that came from any institution?”....“We weren’t denialists,” Kovacev said of his fellow activists at the time. “We just didn’t fucking trust anybody.”

posted by damayanti at 8:27 AM on October 26, 2015 [10 favorites]


I honestly give exactly no fucks about their motivations. I care about their effects. Every single person who has participated in AIDS denialism has blood on their hands.
posted by feckless fecal fear mongering at 8:30 AM on October 26, 2015


I honestly give exactly no fucks about their motivations. I care about their effects. Every single person who has participated in AIDS denialism has blood on their hands.


My point is, yes, the denialists have blood on their hands, but so does the medical establishment, for helping to perpetuate a culture of mistrust that let the denialists take root.
posted by damayanti at 8:32 AM on October 26, 2015 [3 favorites]


When the last of humanity is on a death-race across a dry seabed to seize the last glass of water on earth, there will still be some asshole saying 'What idiots! Climate change isn't real!'
posted by adept256 at 8:37 AM on October 26, 2015 [1 favorite]


Nope. That's giving the denialists a pass. Twenty years ago, at least, the connection between HIV and AIDS was clearly understood, modeled, and mapped out. We knew for a fact that one led to the other. There has been no serious debate on this point ever since.

These people are directly responsible for deaths and "well doctors aren't perfect so it's their fault too" is a cop-out. As with anti-vaxxers there aren't two sides to the story; there are assholes who refuse to acknowledge fact, and then there's reality.

Fuck these denialists, and seriously, fuck giving them any kind of pass for their sociopathic behaviour.
posted by feckless fecal fear mongering at 8:39 AM on October 26, 2015 [24 favorites]


My point is, yes, the denialists have blood on their hands, but so does the medical establishment, for helping to perpetuate a culture of mistrust that let the denialists take root.

This is a false equivalency as bad as "both sides do it" in the political debate. Does the medical establishment suffer from systematic issues that exacerbate inequalities in our society? Sure, just like every other human institution in existence. Does that therefore mean that they're as culpable as folks spreading demonstrably false information that results in many unnecessary deaths? No freaking way.

on edit: FFFF FTW.
posted by leotrotsky at 8:41 AM on October 26, 2015 [10 favorites]


To rephrase the same essential argument as per adept256's comment:

My point is, yes, the climate change denialists have blood on their hands, but so does the scientific establishment, for helping to perpetuate a culture of mistrust that let the denialists take root.

Isn't that obviously nonsense?
posted by leotrotsky at 8:45 AM on October 26, 2015 [5 favorites]


Alright; things I am not saying to clarify:

1) Doctors and scientists are as bad as denialists

2) Both sides are bad, so denialists get a free pass

3) Here's why we should emphatize with denialists

Things I am saying:

1) Many, many doctors treat LGBT+ patients badly-- go to the Ask tab, and look at all of the threads where LGBT+ folks are struggling to find a doctor who treats them well. Go back 30 years, and it was even worse. Some examples are in the linked article.

2) If you get shitty treatment from a doctor, who's clearly homophobic or transphobic, or who does things to insinuate that he thinks you deserve it, that's going to put you off doctors. There are some things here :

Dr Joel Weisman, one of the first physicians to identify AIDS as a distinct condition, summed up the attitude of one of his colleagues by describing one of their conversations:

"I remember calling a person [in infectious diseases] to describe what was occurring. He said - and this was a theme very early on - 'I don't know what you're making such a big deal of it for. If it kills a few of them off, it will make society a better place’.” 22

3) If you're put off by the medical establishment, you're going to look elsewhere for answers. Yes, #notalldoctors but certainly enough doctors to make a difference.

Climate change is different, because generally, we're not looking at oppressed groups who are believing these things, who have been mistreated by the scientific establishment. Ditto for some communities of vaccine denialism. For HIV and AIDS, we are.
posted by damayanti at 8:49 AM on October 26, 2015 [11 favorites]


yeah except like a lot of HIV denialists are straight so
posted by feckless fecal fear mongering at 8:51 AM on October 26, 2015


yeah except like a lot of HIV denialists are straight so


Yeah, and like the article discussed, a lot of them (and the people listening to them) are in sub-Saharan Africa, which also has been screwed over in many of the same ways as minority communities in the US.
posted by damayanti at 8:55 AM on October 26, 2015 [1 favorite]


You're just bound and determined to give denialists cover for their reprehensible behaviour.

They are responsible for their actions. Nobody else. They are. They are the ones who (very often without any scientific training of their own) have decided they know more than the people who actually work on this.

They are the ones who are directly responsible for people, including people I have known, dying terrible horrible deaths and I categorically deny (ahem) that anyone who is not a denialist bears any responsibility, even at a remove, for the actions of these sociopaths.
posted by feckless fecal fear mongering at 8:58 AM on October 26, 2015 [1 favorite]


I honestly give exactly no fucks about their motivations. I care about their effects. Every single person who has participated in AIDS denialism has blood on their hands.

Unfortunately, they weren't all cut from the same cloth. As you're no doubt aware, there was (and in many ways still is) an institutional homophobia in medicine -- and the hundreds of thousands of deaths from HIV denialism can arguably be placed squarely at their feet. You had doctors and scientists who denied the science and taught their patients and/or the public to ignore it. And then they dug in when confronted with studies and other evidence. Their actions snowballed: there were prominent, powerful people like Thabo Mbeki who were convinced by them. Men and women with HIV were rightfully distrustful of the medical establishment that had historically treated them (as Kovacev says, "pariahs.")

It all created a climate in which fear and suspicion were entirely credible.

I feel like the smaller denialists -- the individuals who chose not to get drugs and didn't take precautions and then died because they had been convinced by history and credible sources, were more victims than anything else.
posted by zarq at 9:00 AM on October 26, 2015 [3 favorites]


damayanti, we aren't talking about a bunch of guys sitting around a barbershop saying "You know you can't trust doctors -- remember that Tuskegee thing!" We're talking about organized campaigns by people with access to the entire corpus of science on the topic who actively chose to disregard what the vast, vast majority of their colleagues were saying.
posted by Etrigan at 9:02 AM on October 26, 2015 [3 favorites]


zarq, wow um.. I hate having to say this to you specifically, but: please don't straightsplain my own life to me, ok?

What Etrigan said.
posted by feckless fecal fear mongering at 9:04 AM on October 26, 2015 [2 favorites]


Ouch. Fine.
posted by zarq at 9:06 AM on October 26, 2015 [1 favorite]


I was personally targeted by denialists (carried around the restraining order for years) and while I'm generally sympathetic to critiques of mainstream medicine as being racist and homophobic, I'm profoundly disturbed by the defense of their actions here. The failures of some doctors is not, and should never be, a justification for the kinds of deadly misinformation the denialists spread. Go find some other murderous jerks to defend, please.
posted by gingerbeer at 9:15 AM on October 26, 2015 [7 favorites]


Again, I'm not defending the denialists. I'm not sure how many times I have to say this.

They're bad, evil, have blood on their hands, they're causing deaths, they're psychopaths. Yes, yes, yes, yes. They can get 99.99999999% of the blame.

But people are listening to them, for some reason. And if you don't think that homophobia in the medical establishment isn't part of some of that reason people are listening, I'm not sure what else to say besides read up on the early history of HIV and AIDs, and how people were treated then.
posted by damayanti at 9:19 AM on October 26, 2015 [2 favorites]


Also, if that was directed at me, I'm absolutely not defending denialists either.
posted by zarq at 9:20 AM on October 26, 2015


When talking about denialism it's important to understand the magnitude of HIV in southern Africa.

In North America, denialism is this sort of genteel kookery that affects individuals. It's sort of like believing crystals heal your chakras or that measles vaccines cause autism, something we think of as "a personal choice". Denialism is absolutely harmful in North America, in that it led to sick people not getting life-saving treatment. But it's mostly a form of individual harm.

In Africa, particularly South Africa, denialism was national policy. 20% of adults in South Africa have HIV, and over 10% of adults have HIV in 9 countries in southern Africa. Denying science isn't just killing a few people who read the wrong magazines; it's killing a significant portion of the working population.

I'm completely unqualified to speculate on the causes of denialism in Africa. The fine article we're discussing here does a good job talking about a few specific causes, like Virodene and Tine van der Maas, that sound like they have personal profit motivations. Or maybe just arrogance.
posted by Nelson at 9:24 AM on October 26, 2015 [5 favorites]


My takeaway is, don't look to political conspiracy theory to serve as a substitute for microbiology
posted by thelonius at 9:24 AM on October 26, 2015 [2 favorites]


They can get 99.99999999% of the blame.

They get 100% of the blame because they performed 100% of the actions that deny HIV/AIDS. If you're being a jerk to me and I punch you in the face, would you say that some of the blame is yours? Of course not; I'm the one who chose to hit you.

Reread Etrigan's comment. I dunno what your sexuality is, damayanti (and nor am I saying you need to disclose it), but depending on what it is you might want to rethink telling a gay man who grew up during the initial epidemic and crisis, who went to his first AIDS funeral at 13, who has done HIV/AIDS activism and fundraising, who has to deal with the consequences of homophobia and denialists virtually every day, that he needs to educate himself about the history of the epidemic, thanks.
posted by feckless fecal fear mongering at 9:28 AM on October 26, 2015 [2 favorites]


Thanks for posting this. I learned a lot from it.
posted by persona au gratin at 9:28 AM on October 26, 2015 [1 favorite]


HIV denial seems to be fairly distinct from vaccine denial to me, in that we've known of the efficacy of vaccines for hundreds of years, and the science was settled long before denialists creeped up. HIV initially was indeed fairly mysterious early on and I can understand why the factors that zarq points to made many people hesitant to trust the medical establishment very early on (like, late 70s and early 80s early on).

People who deny the HIV-AIDS link today are indeed pretty much like vaccine autism conspiracy theorists, though. The science is very well settled and you have to be fairly foolish to ignore it at this point.
posted by zug at 9:43 AM on October 26, 2015 [1 favorite]


> I'm not sure what else to say besides read up on the early history of HIV and AIDs, and how people were treated then.

I don't have to read up on that; I lived through it. And was attacked by some of the people referenced in the article. The incident with the cat litter? That happened at an event that I organized. I refuse to cut those guys any slack because of larger societal homophobia. We all lived through that, and we didn't all turn to denialism.

And you & zarq are sounding to me like you're defending those guys, so if that's not your intent, maybe rephrase things, or at least be mindful that for some of us reading and commenting this isn't some abstract interesting historical thing.

I also think this has reached the point where something from my personal life is someone else's interesting thought experiment, and that's usually a good point for me to step away from the conversation.
posted by gingerbeer at 9:44 AM on October 26, 2015 [19 favorites]


Well, that escalated fast.

Cynicism, bigotry and homophobia may motivate this kind of denialism. But I think ignorance does too. I've heard (no cite sorry) that some people think raping a woman is the cure for aids. That is obviously insanely wrong and monstrously counterproductive, but they don't know any better. You got sick by having gay sex? Well have sex with a woman, obviously it will cancel it out.

It's that kind of logic which is a 'common sense DUH' thing. I don't recall the exact aphorism but 'evil and stupid aren't much different sometimes'.
posted by adept256 at 9:47 AM on October 26, 2015


People who deny the HIV-AIDS link today are indeed pretty much like vaccine autism conspiracy theorists, though. The science is very well settled and you have to be fairly foolish to ignore it at this point.

This has been true for at least twenty years.
posted by feckless fecal fear mongering at 9:55 AM on October 26, 2015


Cynicism, bigotry and homophobia may motivate this kind of denialism. But I think ignorance does too.

Right, but this article isn't about the ignorant people. This article is about the people who have all the information and have made the conscious decision to deny it, even in the face of the first wave of maybe-just-ignorant people dying of AIDS and the second wave of flat-out deniers dying of AIDS.
posted by Etrigan at 10:06 AM on October 26, 2015 [6 favorites]


Root-Bernstein doesn't seem to be a denialist in the traditional sense - he replied to an email sparked by a discussion here a few years ago to explain what he thought.
posted by Ned G at 10:08 AM on October 26, 2015 [1 favorite]


gingerest: And you & zarq are sounding to me like you're defending those guys,

I'm going to say this as calmly as I am humanly capable of being.

I lost several members of my extended family, one of my dearest friends and countless work (media, entertainment, fashion, beauty industries) contacts and colleagues to AIDS throughout the 90's. My friend ceased taking AZT and any other medical treatment for AIDS other than colonics and vitamin supplements in 1994 because he bought into denialist/conspiracy theory propaganda and his t-cell count never recovered. He never recovered. He passed away in 1996.

Please read my comment again more carefully. Please. I did not voice or imply a defense of denialism. I would not do that. My friend was a victim of people like Duesberg and Root-Bernstein because thanks to people like that, he became utterly convinced that HIV did not cause AIDS and the pharmaceutical companies were greedy predators. And that was who I had in mind when I said people (like him) were victims.
posted by zarq at 10:11 AM on October 26, 2015 [16 favorites]


And you & zarq are sounding to me like you're defending those guys, so if that's not your intent, maybe rephrase things, or at least be mindful that for some of us reading and commenting this isn't some abstract interesting historical thing.


Me neither; my husband lost his uncle and his uncle's partner to AIDS in the early 90s. And, as a cancer survivor, I've had my share of running into people saying "No, really, look, all you need is the right vitamins/meditation/a good detox" to me.

I'm truly sorry if I phrased things badly; again, I apologize for not wording things in the right way, and, like zarq, I really did not intend anything I said to be read in anyway as defending any denialists.
posted by damayanti at 10:37 AM on October 26, 2015


gingerest: And you & zarq are sounding to me like you're defending those guys,

That was gingerbeer said that, not gingerest.
posted by shakespeherian at 10:59 AM on October 26, 2015


Yes, you're right, of course. Sorry.
posted by zarq at 11:03 AM on October 26, 2015


Look at where, say, Johns Hopkins is located; look at the population they're drawing on for experimental treatments.

Johns Hopkins Hospital was established in East Baltimore in the 19th century with an institutional mission of providing care for the underserved and underprivileged population that lived at its doorstep. To suggest that JHH is located where it is because of ease of access to disenfranchised people to experiment on is counter to historical fact. It's also counter to my experience working in clinical research at JHH -- as a tertiary care center, a huge proportion of its patients and participants in clinical trials aren't even Maryland residents, to say nothing of denizens of East Baltimore.

I am very familiar with the history of atrocities committed in the name of medical research, but the existence of Johns Hopkins is not one of them. If it sounds like I'm making a big fuss over nothing in an unrelated thread, consider that this kind of medical establishment fear mongering and "have you ever noticed this minor detail that implies this major injustice?" is how we get denialism, and its dangerous societal outcomes, in the first place.
posted by telegraph at 11:09 AM on October 26, 2015 [10 favorites]


I see denialism in the population all the time, more in reference to stigma. I think part off it is mistrust of science, but part of it is a generation of uneducated men and women (not their fault) who rely on sensationalist new coverage for bits and peices without any continuity. They also rely on word of mouth experiences from friends and family.
They don't know and poverty doesn't allow for time to learn. And what they have learned can't be vetted because there is no time.
Many come around if someone invests resources into education for the.lm but some just stick to what they know.
posted by AlexiaSky at 11:10 AM on October 26, 2015


Of course, I never got the "No, it's lifestyle!" argument after Ryan White died, either.

The denialist view was that people like Ryan White died from AZT, which was supposed to be worse than HIV.

The AIDS denialist claims were like Julian Jaynes' bicameral mind: you always JUST MISSED IT. For AIDS, the "real cause" had conveniently stopped being a factor right before that factor had disappeared... i.e., first it was caused by lifestyle factors, which were no longer a factor by the time people were diagnosed and on AZT. Then by the time effective anti-HIV drug cocktails had become available, THEN the previous deaths had been caused by AZT. Since access to HIV drugs in Africa goes hand-in-hand with development, denialists will walk in and say, "of COURSE it looks like the drugs are working-- all this development infrastructure arrived!" in much the same way anti-vaxxers credit public health infrastructure rather than vaccines for falling disease rates.
posted by deanc at 11:21 AM on October 26, 2015 [2 favorites]


Thank you for posting this.
posted by ApathyGirl at 11:41 AM on October 26, 2015 [1 favorite]


I was loosely around some of the ACT-UP and Queer Nation people in the Bay Area in the early 1990s (mostly through being involved in funding their affiliated student clubs at Berkeley).

The denialism that I saw -- which was quite powerful -- wasn't inspired by the perceived homophobia of the medical establishment; doctors who weren't openly sympathetic and compassionate had been gone from the AIDS treatment business for a decade or more. Instead, it took root in ground prepared by a perception of the absolute futility of the science. Many treatments were brutal and seemed to do nothing to extend life. and definitely reduced quality of life along the way. A person with an even slight persecutorial or paranoid mode of thinking, after getting beaten up for years, or seeing friends or lovers being beaten up for years and die anyway, was ripe for denialist thinking because at least it tried to make sense of it all.

Fortunately, the denialists I met in 1993 and 1994 lived long enough to see the cocktail therapies produce their first dramatic results in 1995 and 1996 which (I gather) converted some back to science and inspired a sort of Pascal's wager of suspension of disbelief in others.
posted by MattD at 12:07 PM on October 26, 2015 [4 favorites]


I get why people were put off by the medical establishment and the early, high-dose AZT regimes etc. but it's ironic that they would then take up with Duesberg and Root-Bernstein, who come this close to blaming "the gay lifestyle."
posted by atoxyl at 12:14 PM on October 26, 2015 [3 favorites]


Also Duesberg published his big (Kary Mullis endorsed) book not in 1986 but in 1996 which of course is just about exactly when HIV treatment became truly effective. He has blood on his hands (pen?) for sure.
posted by atoxyl at 12:19 PM on October 26, 2015 [2 favorites]


The thing is, back in the early 90s, there were simple experiments that could be performed for any of the AIDS denialists, at least for those who were scientists. I remember Duesberg stating that HIV didn't kill lymphocytes and that AZT did. Fine, it took an hour to set up an experiment to inoculate a culture of lymphocytes with HIV and look at their outcomes over two weeks in comparison to non-inoculated cultures. You could add AZT and see whether they died off more quickly. By the time of 1991, this was a student level project. He just didn't want to see.
posted by dances_with_sneetches at 12:21 PM on October 26, 2015 [2 favorites]


"Truthers" is the most self-oxymoronic term ever coined.
posted by oneswellfoop at 12:25 PM on October 26, 2015


I am very familiar with the history of atrocities committed in the name of medical research, but the existence of Johns Hopkins is not one of them. If it sounds like I'm making a big fuss over nothing in an unrelated thread, consider that this kind of medical establishment fear mongering and "have you ever noticed this minor detail that implies this major injustice?" is how we get denialism, and its dangerous societal outcomes, in the first place.

I would posit that this is untrue. I'm not calling out John Hopkins specifically, but many -- if not all -- schools of medicine and public health have done all sorts of unethical things in the name of promoting health, sometimes because the experiments were in many ways products of their time and social millieu. Experiments and interventions that I would consider unethical or at least questionable still happen today in low-income/racial minority/woman-cenric/LGBTQ/etc settings in the global North and South.

Which is not to say that AIDS deniers should not be villified. They should, especially ones who live in the global North and have no possible excuse for perpetuating deadly misinformation for political gain.

Abroad, though, I have a harder time pointing fingers. AIDS denialism is a HUGE problem, and it is causing so so so many deaths. But...the CIA has posed as vaccinators in some Middle Eastern countries. Smallpox eradicators used hugely unethical physical violence in South Asian countries by dragging people out of their homes, holding them down, and vaccinating them in the late days of the eradication campaign. The US, Europe, the World Bank, the IMF...have largely created the extreme poverty, lack of healthcare infrastructure, and low education levels in many countries where AIDS denialism is rampant. We (and by we, I mean the medical and public health establishments in the global North) cannot absolve ourselves of the part we have played in creating these conditions.

AIDS denialism is inexcusable and actively malicious, and I think how we deal with it depends on where and under what conditions it's happening.
posted by Ragini at 1:49 PM on October 26, 2015 [2 favorites]


I admit I was in high school at the time so the details may be foggy, but I remember being very, very puzzled when ACT-UP went from being this anti-homophobic activist group raising awareness about HIV, to flipping over to HIV denialism. Like almost overnight. Was I just young or was the transition relatively sudden?
posted by Aya Hirano on the Astral Plane at 2:12 PM on October 26, 2015


AHotAP, as far as I know it was mainly a splinter of the SF chapter of ACT-UP that underwent that transition.
posted by en forme de poire at 2:16 PM on October 26, 2015 [3 favorites]


I can certainly accept that people within the medical/scientific establishment have behaved unethically and committed grave offenses in which innocent people were misled and harmed, and that homophobia and racism were (and are still) pervasive in the medical community, and that these things have understandably contributed to an environment of mistrust. However, this same mainstream scientific/medical community was also responsible for determining that HIV caused AIDS, coming up with the first effective therapies to prevent HIV's progression, and using scientific evidence to combat denialists like Duesberg and Mullis by repeatedly rebutting their arguments in public venues. The legacy of prominent AIDS denialists like Duesberg and Mullis is comparatively one-sided (and includes, I think, a direct impact on South Africa as well as the USA: Mbeki's thinking is believed to have been influenced by American AIDS denialists, and he invited Duesberg and other denialists to sit on a South African advisory panel about AIDS).
posted by en forme de poire at 2:24 PM on October 26, 2015 [1 favorite]


En forme de poire, I'd agree with that. The US: bringing colonialism, e-waste, and AIDS denialism to a country near you.
posted by Ragini at 3:24 PM on October 26, 2015


I would posit that this is untrue. I'm not calling out John Hopkins specifically, but many -- if not all -- schools of medicine and public health have done all sorts of unethical things in the name of promoting health, sometimes because the experiments were in many ways products of their time and social millieu. Experiments and interventions that I would consider unethical or at least questionable still happen today in low-income/racial minority/woman-cenric/LGBTQ/etc settings in the global North and South.

They acknowledged this - what they were disputing was the comment that seemed to insinuate that the location of Johns Hopkins was chosen because it provided convenient access to a disenfranchised population to experiment on (rather than to provide needed care for). I say "seemed to insinuate" because I'm not actually sure this is what was meant, but I do see how it could read that way.
posted by atoxyl at 3:55 PM on October 26, 2015 [3 favorites]


JHU School of Medicine is known to have administered a Tuskegee-like study, in fact, but they did it in Guatemala.
posted by atoxyl at 3:59 PM on October 26, 2015 [1 favorite]


Johns Hopkins is known to have been sued for alleged connections to a Tuskegee-like study that was conducted in Guatemala in the 1940s. Several Johns Hopkins faculty members were involved with the study, but it was not administered by JHMI (anymore than one could say it was administered by Harvard, Yale, the US Army and Navy, or UPenn, all of whom had faculty or high ranking officials involved in the study).

So here I am, yet again, fact checking a derail that is not particularly germane to the discussion, but I still think it's important for the same reason I described in my previous comment.
posted by telegraph at 5:06 PM on October 26, 2015


Hopkins has a Department of Medicine, not a School of Medicine.
posted by OmieWise at 5:15 PM on October 26, 2015


what they were disputing was the comment that seemed to insinuate that the location of Johns Hopkins was chosen because it provided convenient access to a disenfranchised population to experiment on (rather than to provide needed care for). I say "seemed to insinuate" because I'm not actually sure this is what was meant, but I do see how it could read that way.

Yeah; bad wording again. It's more the the fact that many research hospitals are located in inner cities, which can lead to things like some research trials disproportionally recruiting from disenfranchised groups. There's also the fact that, in the early 1900s, if you were rich enough, you had a doctor come to you; if you were poor, you went to hospital, where you had a greater chance of being experimented on without your consent. (This continued through the mid 1900s; see Henrietta Lacks for a particularly famous example). So the hospitals were serving the communities to some degree, but doing some ethically shady things while doing so.
posted by damayanti at 5:49 PM on October 26, 2015 [1 favorite]


None of which explains denialists like Deusberg and Root-Bernstein, who cannot be said to be simply ignorant and who are/were supremely positioned to feed the fear and ignorance so very effectively.
posted by rtha at 5:57 PM on October 26, 2015 [3 favorites]


Pre-clarification: I am not gingerbeer and have not yet commented in this thread.
OmieWise:
"Hopkins has a Department of Medicine, not a School of Medicine."
This is not correct. Johns Hopkins University School of Medicine.

One thing I want to add to all this is that while I was in grad school, Peter Duesberg spoke to a small class I was in led by Professor Malcolm Potts, and Duesberg believes, right down to his toes, that HIV doesn't cause AIDS. Maybe he started out for glory and money, but he stayed in as a long-term, dyed-in-the-wool true believer. The logical knots he tied himself in to make an argument, in the late 1990s, had to be seen to be believed, and I can't even imagine what he came up with to refute the evidence in his 2004 book.

He was incredibly persuasive, and his science sounded good at a superficial level, plus he held huge esteem because he was such a huge, important player in cancer biology (such a huge player that he's managed to turn contrarianism into a business that keeps his lab going despite not being PI on an NIH grant in 20 years). It is only by luck and the concerted efforts of a large number of AIDS scientists and activists that he didn't have the ear of policy-makers in the US.
posted by gingerest at 7:47 PM on October 26, 2015 [3 favorites]


such a huge player that he's managed to turn contrarianism into a business that keeps his lab going despite not being PI on an NIH grant in 20 years

Wow, that is just completely infuriating.
posted by en forme de poire at 8:51 PM on October 26, 2015


apologies in advance for any semi-coherence...

way upthread on Foo Fighters & Spin...I remember Exene Cervenka* saying, very lucidly & not manically, that AIDS was developed in a laboratory. I've decided that some people are in some kind of 'speedfreak intelligentsia' where they're not just irrational, but also have a need to feel that they have some 'insider information' that us sheeple do not because they are so underground and far more in the know than the rest of us. It's like some kind of pseudo-intellectual underground elitism on top of paranoia. Paranoia, I understand, and outrageous theories I'm willing to hear out, but that idiot factor seems to have had some kind of underground cred (?) in some very weird way. Like it was a badge of how radical you were, even if you sounded like an idiot to everyone else. (Perhaps especially if you sounded like an idiot to everyone else). I'm not sure I'd call it sociopathy, like fffm did, more just a strangely grandiose kind of dumbness. While I can sympathize with someone who would be genuinely vulnerable and paranoid given the treatments of the early days, I can't sympathize with that. So, on second thought, yeah sociopathy is right on the money there.

Having once been really into alternative medicine (yeah, I know) I was somewhat willing to hear it out back in the day. (I'm willing to hear out just about anything, I mean, I listen to Coast to Coast AM for god's sakes). I lived in SF then & I remember that wing of ACT Up & its alarming fliers & stickers. They just spooked me. (I worked at a free clinic but wasn't really an activist in the direct action sense). It was the type of radicalism that just undermines a whole cause; SF seemed to have a lot of that going around in the 80s in all types of causes- -the radical-chic wingnuts that just fuck things up.

I do recall hearing about a handful AIDS-immune prostitutes in Africa that may've been part of that argument, but it seems like a pretty skewed line of reasoning to point to a few outliers out of hundreds of thousands. Perhaps they were extrapolating from those outliers?

*since moved on to greener, equally infuriating conspiracy pastures; she is definitely the maven of the speedfreak intelligentsia
posted by GospelofWesleyWillis at 9:49 PM on October 26, 2015


This is not correct. Johns Hopkins University School of Medicine.

Color me surprised and corrected. When I worked for the place, I got schooled hard in that. My signature block had to say Department of Medicine.
posted by OmieWise at 6:17 AM on October 28, 2015


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