Short Memories: AIDS Denialism and Vaccine Resistance

A friend of ours was telling Ingrid about this new woman she's been dating. Things were going along swimmingly... until it turned out that the new inamorata, a youngish thing in her early thirties, was an AIDS denialist. She was swallowing all that bullshit about how HIV doesn't really cause AIDS, AIDS drugs are what causes AIDS, and the whole thing is a vast conspiracy by the drug companies to get rich selling people drugs they don't need and that just make them sick.

This was absolutely the wrong thing to say to our friend, who had been an AIDS activist since the early days of the epidemic, had nursed several beloved friends through the illness, had seen way too many of those friends die... and had seen others come back from the brink of death when the protease inhibitors and combination therapies finally came out.

So Ingrid and I were talking, not only about how ignorant AIDS denialism is and what a perfect example of the Galileo Fallacy it's proving to be... but also about how profoundly insensitive and clueless it was for this woman to talk this way to someone who'd been through the worst days of the epidemic. Doesn't she remember? we said. Doesn't she know what AIDS was like before the drug cocktails came along?

And it occurred to both of us:

No. She doesn't remember.

And that's the problem.

There are some AIDS denialists who were around in the '80s. But an awful lot of them don't remember. They weren't around during the early days of the epidemic, when there was absolutely no treatment and your life expectancy when you got diagnosed was a few months, a year or two if you were lucky. They don't remember the days when a diagnosis was pretty much a death sentence -- a sentence to a slow, painful death. (Some people with AIDS lived through those days to tell the tale, but not many.) They don't remember having half their gay male friends get sick and die. They don't remember people lying in the streets screaming for the medical establishment to fucking pay attention and work on a treatment, some treatment, any treatment at all.

And they don't remember what it was like when the cocktail came along, and suddenly people started getting better and living longer. They don't remember the wonderful (although not entirely trivial) "problem" of people with AIDS who had quit their jobs and run up huge credit card debts, and now actually expected to live for a while. They don't remember what it was like when AIDS turned, almost overnight, from a deadly illness to a chronic but often survivable one.

To them, AIDS has always been what it is now. They look at HIV and AIDS, and they see a bad disease, one that still kills a lot of people and makes a lot of people pretty damn sick, but also one that people have a decent chance of surviving for a good long time. They see the cocktail making some people feel crappy. And they see the cocktail being really expensive, and making drug companies very rich indeed.

What's more, they have little or no awareness of what AIDS is still like in Africa, and other places where prevention and treatment still range from lousy to non-existent... and where the pandemic is as bad or worse as it ever was in its early days in the U.S.

So it's much easier for them to ignore or dismiss the effectiveness of the cocktail, and to treat it as a drug-company conspiracy. It's easier for them to see themselves as brave Galileos for resisting the "lie" of HIV drugs... because they have no memory of the harsh, horrible truth of HIV before the drugs came along.

And I think the same thing is happening with the vaccine resisters: the people who insist that vaccines -- measles, mumps, rubella, polio, tetanus, what have you -- are useless poison, foisted on an unsuspecting public by a Big Pharma cabal of cackling men in expensive suits.

The problem, again, is that they don't remember.

They don't remember what the world was like before the vaccines. They don't remember the polio epidemic that killed thousands of children and disabled tens of thousands -- in 1952 alone. They don't remember the rubella pandemic of the 1960s, when tens of thousands of babies were born dead or with birth defects because their mothers were infected. (FYI, I could easily have been one of those babies -- my mother got rubella shortly after I was born, and it could easily have been just a little earlier when she was pregnant with me.) They don't remember the time when people routinely died of lockjaw... and they don't live in non-industrial parts of the world where people still do.

All they see is a world in which polio, rubella, tetanus, etc. almost never appear... and people are immunized against them for no apparent reason.

See, this is the problem with public health efforts that work. When they work, they quickly become invisible. It's very hard to see prevention working: when it works, you don't see it. So it's easy for people to see things like immunization as pointless. They do happen for no apparent reason... "apparent" being the operative word. The reason is very good indeed, the reason is unassailably excellent -- but unless you've lived in a world without immunization, the reason isn't very apparent at all.

(Interestingly, the conspiracy theorists linking vaccination with, for instance, autism don't seem very interested in the actual, documented, verified conspiracy in which the researcher who originally published the now-discredited "vaccines cause autism" study was paid hundreds of thousands of pounds by trial lawyers trying to prove that vaccines were harmful. Links here and here, via Wikipedia.)

Look. I'm no great friend of the drug companies. I get that the way health care is handled in this country is -- how shall I put this? -- evil. Its purpose is largely to make insurance and drug companies rich, not to help healthy people stay healthy or sick people get better. Ingrid works in health care in this country, and she could tell you stories that would curl your hair. See "Sicko" if you don't believe me.

But that doesn't mean that AIDS drugs don't work. And it doesn't mean that vaccines don't work. The evidence is overwhelming that they do.

Yes, our country's health care system sucks. But our educational system sucks as well. And one of the ways it sucks the most is in its failure to teach reasoning, cause-and-effect... and history. The history of AIDS drugs, and the history of vaccines, are a history of the prevention of pointless suffering and death -- millions of times over.

P.S. I will warn you right now: I am not going to get into debates with AIDS denialists or vaccine resisters in this blog. I don't have the patience, and other people make these arguments better than I can. AIDS denialists or vaccine resisters are hereby directed to Denialism and to Skeptico. My apologies in advance to the keepers of those blogs. I'm putting you both on my blogroll to make up for it.

Addendum: Or you could go to Aetiology, where they linked to this post and are having a lively discussion about it. And thanks to both Aetiology and Denialism for the links!

Comments

[Laura Upstairs]

AIDS denialists, sigh...

[Skeptico]

So what's Duesberg's excuse? He was around in the '80s and must remember what it was like.

[Greta Christina]

"So what's Duesberg's excuse?"

Straight-up Galileo Fallacy, I'm assuming.

http://gretachristina.typepad.com/greta_christinas_weblog/2007/09/the-galileo-fal.html

Also he's a douchebag.

[Chris]

Duesberg's excuse is that it's his only way to get any recognition in his field.

I love to argue, but there are some things that I resent even being asked to argue about: evolution vs. "intelligent design", Holocaust denial, the 9/11 "truthers", people who believe that the world is run by extraterrestrial reptoids disguised as Jews....

And then there's these people. I am old enough to remember the first days of AIDS, albeit barely. I was in high school when ACT/UP was hitting the streets, and the full force of all the death in the gay communities didn't really touch me. But I did become aware of sex and death at the same time, and how closely those two could be linked. I also remember AZT, and how people could die from that faster than from the disease itself.

And maybe it's that memory that resonates somewhere deep in the collective memory of the HIV-deniers, rather than the horror of the die-offs. After all, we got screwed once by the pharmacy companies, why should we trust them now?

But I think that there's something else pushing the HIV deniers. I think the attraction of conspiracies like this is much the same as the attraction of believing in gods and devils as the source of disease, even when the evidence tells you otherwise. Which, really, would you like to believe? That AIDS is the result of deliberate, calculated malice motivated by greed? Or that it arose accidentally out of inchoate forces of nature alternately working against and with one another?

The former option may be horrible, but it's not as scary as the latter for most people. It at least implies that there's a controlling force behind all this horror and pain and death, and if only we can overcome the malice focusing that force for evil, then we can control it ourselves -- for good.

The latter is, to most people, a horrible thing that they don't want to deal with: there was no meaning, right or wrong, behind the pain and deaths of those people. It was not malice on the part of nature, but just the way things happen.

Conspiracy theories are the mythology of the modern era. They're the way that people impose order on a world that seems out of control. The hateful, omnipotent powers that they invent might be scary, but not as terrifying as chaos.

[MarkH]

Thanks for sending me the link Greta, it's a great essay and raises an important point about a source of denialism. I've linked you from denialism blog.

[Tony P]

It is sad that we're going to see the epidemic of HIV and AIDS happen all over again because people forget their history.

I lived through it in the late 80's. It was horrible and I lost 3 good friends to the disease.

Another friend of mine has lost dozens of friends.

But it'll happen again because people in the U.S. seem to have the memory span of a gnat.

[The Ridger]

I was 7 when the Sabin vaccine was licensed for use, and we - my brothers and sisters and I - went to the local elementary school to stand in line for hours to get one of those magic sugar cubes. I was too young to really understand polio - my brother, who was 13, remembers the fear much better than I. But what I do remember - so clearly for such an early memory - is the emotions of all those mothers standing in the hot sun on the playground waiting in line - the overwhelming gratitude and relief and joy. My little brother was 4 and remembers nothing of those days.

You're absolute right about memory and the lack thereof.

Chris is also right about why people love conspiracy theories, I think; random is so hard to deal with.

[Jokermage]

I posted a link to this on my LiveJournal. Wonderful essay!

[Jane Know]

Great article. Coincidentally, I was just thinking about writing an article on the same subject. But now I don't have to. :-)

[Tommy]

Very good post Greta.

What is relaly unconscionable is people like South African president Thabo Mbeki who promote bogus cures for AIDS and who publicly question and cast doubt on HIV being the cause of AIDS. Especially for the people in his own country who might not know any better, when they hear such nonsense from an authority figure such as him, the consequences can be deadly.

[Jon Berger]

I've got to say, whatever you may think about the morals, ethics, and business practices of so-called Big Pharma, there's this little pill I take every day, and when I take it, my blood pressure goes down to normal. That's pretty fuckin' amazing, when you think about it. I put a little piece of crunchy stuff in my mouth, swallow it, and poof, I have normal blood pressure, and will therefore have the opportunity to die of something other than a heart attack or a stroke. My parents, both of whom had chronic hypertension from about age 30, lived to 86 and 92 due to this class of wonder drugs. I really appreciate this. Honestly. Thank you, pharmaceutical industry. It's just very hard for me to think about all the bad stuff they do -- which they do, and I don't mean to say that I'm unaware of it -- without also thinking that some of the good stuff they do is pretty miraculous.

To say nothing about the fact that they solved a scientific puzzle that's been around even longer than the one about turning lead into gold: they invented an actual, functional, working aphrodisiac. Well, semi-functional; it only works for men. But still, damn. Humanity has been working on this one since about 3,000 B.C., and within my lifetime, we did it. Jokes about Bob Dole and Mycoxafailin and so forth notwithstanding, that's pretty cool, in the grand scheme of things.

[ebohlman]

Chris: what you're describing is called the "just world" view. It's quite pernicious because it implies that bad things only happen to bad people (or to good people who lapse). It's also the cause of the belief that if people just "lived in harmony with nature" or "got closer to the land" life would be so much better; it views "nature" as a nurturing mother.

Jon: no aphrodisiacs (substances that create sexual desire) have yet been invented. ED drugs don't make men horny; they just make the "plumbing" respond better to already-existing sexual desire.

[Vern]

It's hard to believe that people actually do deny that HIV is real. I missed out on the 80's epidemic - I was fairly young, and it simply was not an issue in rural NH given that the number of homosexuals there could have fit in one bar. Oh, yeah, we did actually all fit in one bar. But I dated a couple of guys - one who found out he was HIV pos (thank god for condoms) and another who had it and told me up front after a few dates. It's been over 15 years now since I was with them, so they're quite possibly gone now (I lost touch wnen I moved across country) but I will never forget Shawn... he had just made an AIDS quilt for his father when he found out and he had to think about making one for himself.

So denialists, don't fool yourselves. Really. The Earth isn't flat, the sun does not revolve around the Earth, and Republicans really DO NOT have your best interests in mind. No Santa either.

Vern

[Kelly]

Great article!
Thanks for sending the links. What a horrible disease!

[Timothy B]

I remember living in San Francisco years ago and constantly being bombarded with denialist propaganda through Act Up San Francisco, after they jumped the shark from AIDS activism. What is sad is that many of those people from ACT UP SF are now dead because they refused these meds which have helped to prolong and improve life for many, many people.
Sad that people would rather listen to them than to reason..

[Greta Christina]

Too true, Timothy. And what's really, *really* sad is that ACT UP San Francisco didn't used to be a denialist group. ACT UP San Francisco used to be the people lying in the streets demanding treatment: demanding shorter trials for drugs, demanding lowered prices on drugs, demanding that the drugs be tested on women as well as men, etc. The hijacking of ACT UP San Francisco by AIDS denialists is a fucking tragedy.

[Rebecca]

Yeah, we should have kicked the denialists out when we had the chance. But it turned out that there was no room in our process to eject insane, abusive members. And boy is that a lesson learned the hard way.

[edweird]

It's heartening to see somone put this out on the table. As an AIDS survivor, I know the drugs are really lifesavers. The combinations have also improved dramatically, offering a much better quality of life, and much better effectiveness. However, they are far too expensive. Thanks for the thoughtful column!

[DawnD]

I used to work for Duesberg, back in the late '80s and very early '90s. He is indeed a douchebag, though that is insulting a perfectly useful tool, IMO. He's a peacock and a man of small stature with over-grandiose ideas about himself. While I worked for him, his wife divorced him and keyed his Mercedes with obscene words. He drove at least one secretary to the brink of suicide (not me, though I was in tears often enough), and my husband to scream "fuck you!" into the phone when he called looking for the location of a file at 8am on a Saturday morning. He's racist, sexist, and homophobic and gives his fellow Germans a bad name (used to tell racist jokes in German in front of me, assuming I couldn't understand him--I'm white, BTW, so he probably thought I'd "naturally" agree with him). I spent nearly three years of my life working for the man, reading and re-reading every word he wrote, and in that time he never convinced me of the validity of his "theories," which are all "gedunkenexperiments"--thought experiments and "literature reviews." His research field is carcinogenesis, and he's never done a lick of actual HIV research (laboratory or clinical) in his life, AFAIK. Anyone who believes his poppycock is a fool and not to be trusted, IMNSHO.

Thanks for a good post. (Over here via The Rotund and RioIriri's post in "The Fatosphere".)

[Fausto Intilla]

Source: http://www.sciencedaily.com/releases/2007/10/071012080135.htm

Science Daily — The search for a vaccination against HIV has been in progress since 1984, with very little success. Traditional methods used for identifying potential cellular targets can be very costly and time-consuming.
The key to creating a vaccination lies in knowing which parts of the pathogen to target with which antibodies. A new study by David Heckerman and colleagues from Massachusetts General Hospital, publishing in PLoS Computational Biology, has come up with a way to match pathogens to their antibodies.
At the core of the human immune response is the train-to-kill mechanism in which specialized immune cells are sensitized to recognize small peptides from foreign pathogens (e.g., HIV). Following this sensitization, these cells are then activated to kill cells that display this same peptide. However, for sensitization and killing to occur, the pathogen peptide must be "paired up" with one of the infected person's other specialized immune molecules--an HLA (human leukocyte antigen) molecule. The way in which pathogen peptides interact with these HLA molecules defines if and how an immune response will be generated.
Heckerman's model uses ELISpot assays to identify HLA-restricted epitopes, and which HLA alleles are responsible for which reactions towards which pathogens. The data generated about the immune response to pathogens fills in missing information from previous studies, and can be used to solve a variety of similar problems.
The model was applied to data from donors with HIV, and made 12 correct predictions out of 16. This study, says David Heckerman, has "significant implications for the understanding of...vaccine development." The statistical approach is unusual in the study of HLA molecules, and could lead the way to developing an HIV vaccine.
Citation: Listgarten J, Frahm N, Kadie C, Brander C, Heckerman D (2007) A statistical framework for modeling HLA-dependent T cell response data. PLoS Comput Biol 3(10): e188. doi:10.1371/journal.pcbi.0030188
Note: This story has been adapted from material provided by Public Library of Science.

Fausto Intilla
www.oloscience.com

[DV]

I find this stuff really depressing. I joined ACT/UP in 1990 in Norman, Oklahoma. I remember back then all the rednecks who sincerely believed that AIDs was spontaneously created by two gay men having sex and that straight people were immune. It still makes me sad.

Denialists flabbergast me. MY inner paranoid conspiracy theorist wants to scream that denialists are plants by right-wing agenda groups because misinformation is an excellent way to murder your political opponents. More rationally though, I suspect denialists are a degeneration of the idea that drug companies aren't looking for a 'cure' because continual regiment for the rest of your life is more profitable.

Still. It makes me very sad. I feel like we somehow failed in providing HIV/AIDS education back in the early 90s. Putting myself at physical risk by standing up and debating the CCC (Campus Crusade for Christ) when they presented mis-information about the risk of 'safer-sex' now seems like it was pointless. :(

[Rachel Waghorn]

I just have a few things to say.
Would I be wrong in assuming that doctors, scienists and drug companies lie. Years ago when we here of polio, measles, even ebola virus etc.... How do these diseases really measure up to what we have today? Should we always believe a doctors diagnosis? Just because they say we have something wrong with us, doesn't mean we have to believe them and use there prescribed treatment. This here is when you get a second, third maybe even fourth opinion. Example : You have tonsilitis? Take these pills. Could these simple pills "penicilin" contain cancer causing agents in themselves? Or maybe something else?
How did people get over the common cold years ago? How did they get over tonsilitis? Did they all die?
Don't you see. You have been made blind by your own narrow mindedness. Open your eyes, rise to the challenge? Think with your own mind and not the TV or newspapers antics about bullshit!! You might actually learn something.
And whatever happened to the cure for AIDS? We are supposed to have it available by 2010 but hey... They said that back in 2002 and have we heard a peep since? NO!! We as humans create our own diseases. Of course we can cure it!! The world is run by people who are out to kill, hurt and intimidate. It's about Power.. Playing God, as they say? Please think before you make your final judgements.

[Greta Christina]

Thank you for sharing, Rachel.

[Indigo]

I have a friend who spent most of her teenage years feeling like crap. Many of her concerns were dismissed by her doctor, who ignored how she really felt and what sorts of treatments were working. She decided to take matters into her own hands and went on a low-sugar diet. Which turned out to work, since most of her problems stemmed from her untreated type II diabetes.
All well and good - until she decided to become a raw-foods only vegan, on the grounds that conventional medecine had done nothing but fail her so she might as well throw it out completely in favour of so-called "alternative therapies". She's constantly sick, even more tired than before she cut sugar out, and generally listless.
In short - no, doctors aren't always right, but discarding scientific inquiry entirely will fix nothing.

[Julanar]

Rachel - You have the legal right to refuse medical treatment. You don't even have to go to doctors at all if you don't want to. Just don't blame them when you're dying.

[Timothy (TRiG)]

Ben Goldacre is fascinating (as usual) on this subject.

TRiG.

[CHEZ]

WATCH THE ORIGIN OF AIDS DOCUMENTRY

[Nikki B.]

Wonderful. Amazing essay. Horrible how so many people can be so freaking unaware of how horrible the world is becoming. Must be because of the Republican-run media.