Sorry, up against it on time, I’ll post a longer version of this article with links later on x
Ben Goldacre
The Guardian,
Saturday 3 January 2009
Happy New Year and everything, but know this: nothing has changed, people continue to have stupid ideas, newspapers continue to laud them, and lives will be lost. Here is just one: What if everything you thought you knew about Aids was wrong? That was the title of a book by Christine Maggiore, an HIV/Aids-denialist lauded in the American media. She is now dead.
Maggiore decided that HIV does not cause Aids, and that antiretroviral drugs do not treat it. She was HIV positive, which the media loved. She declined to take ARV drugs and specifically decided not to take HIV drugs during her pregnancy, despite the strong evidence that they massively lower the risk of maternal transmission. She insisted on breastfeeding her children, even though it has been shown that this increases the risk of maternal transmission. She also refused to have her children tested for HIV. Her daughter, Eliza Jane Scovill, died three years ago. The coroner attributed the death to Aids and Pneumocystis carinii pneumonia. She was three years old.
Last Saturday, two days after Christmas, Maggiore died of pneumonia, aged 52. She was an extremely effective advocate. She set up successful campaigning organisations and counselled HIV-positive pregnant women on how to avoid pressure from medics to use azidothymidine (AZT) during pregnancy to prevent maternal transmission of the virus. She appeared on the cover of Mothering magazine, with a “No AZT” sign painted on her pregnant tummy.
However, as always, this is about far more than one person. Maggiore’s views on HIV were driven by the work of Peter Duesberg, a well-known Aids denier. He was unable to persuade other scientists that his views on HIV were correct, but he did very well with journalists, most notably Neville Hodgkinson, former science correspondent of the Sunday Times.
Over two years in the early 1990s the paper published a series of lengthy articles rejecting the role of HIV in causing Aids, calling the African Aids epidemic a myth. It was all a scam to make money and defend reputations, they said.
Things got so bad that Nature, probably the world’s most important academic journal, published an editorial describing the Sunday Times coverage as “seriously mistaken, and probably disastrous”.
Duesberg went on to great things, including South Africa’s president Thabo Mbeki’s disastrous presidential advisory panel on Aids. It was here that the country’s Aids-denialist policies were set into play, with tragic consequences. One demographic modelling study estimates that if the South African government had used antiretroviral drugs for prevention and treatment at the same rate as the Western Cape, around 171,000 new HIV infections and 343,000 deaths could have been prevented between 1999 and 2007.
Aids is the opposite of anecdote: three million people died of it last year. Hundreds of thousands of lives, perhaps millions, have been lost because of a stupid idea, promoted by stupid people. To the best of my knowledge, not one has either apologised or clarified their stance. Just don’t let anyone tell you pseudoscience is harmless.
deeperwell42 said,
January 3, 2009 at 4:11 pm
Thanks for this, Ben. People need to understand that while, say, homeopathic remedies for rich westerners might be fairly harmless, it’s all on the same continuum of thinking that leads to this sort of travesty. To my mind, one of the biggest problems is that the media love a meverick. Andrew Wakefield and the like are able to generate acres of favourable press, not despite contradicting the scientific consensus, but BECAUSE they do. This enables them to write themselves into a narrative where they are the brave, lone voice speaking out against an uncaring hegemony to expose the truth. You see the same kind of attitude with creationists and global warming denialists – the verdict of an overwhelming majority of the world’s scientists is actually seen as a downside for a theory, because everyone loves an underdog. The message has to get through somehow that having a minority opinion and challenging the “establishment” isn’t enough, in and of itself, to make you science’s answer to Woodward and fucking Bernstein.
The Inorganic Gardener said,
January 3, 2009 at 8:33 pm
Not only a tragic death (that could have so, so easily been prevented) but entirely tragic circumstances. The pseudoscience behind these deaths (Maggiore and her child) is bad enough but the complete lack of education/trust in established experts which allows these things to propagate is quite another. To think that even after the death of her own child she still stood by her opinions is quite an astonishing thing. I’m gobsmacked.
tig
dg_rationalist said,
January 3, 2009 at 10:29 pm
So many people’s lives have been lost unnecessarily because of the ignorance propagated by AIDS denialists. It really does depress me that Andrew Neil (who I think was editor of the Sunday Times during the 1990s) not only is now a leading political commentator at the BBC but as far as I know has never publicly apologised for publishing erroneous news articles concerning HIV and AIDS. If ever there was a field where newspaper editors SHOULD publicly apologise for inaccurate reporting it is in the field of public health. Andrew Wakefield’s study may have been discredited but most of the journalists who fuelled the MMR panic in the first place are still employed. It angers me that journalists such as Melanie Phillips can portray themselves as defenders of “Enlightenment values” and yet believe they know better than epidemiologists.
Best wishes, Ben, for 2009 and the battles that lie ahead.
natsils said,
January 4, 2009 at 12:30 am
Ben, that last paragraph is perfect. It sums up just how dangerous pseudoscience is and reinforces that all of us who understand science have a duty to fight against it.
I am a biology graduate who is a medical student and am lucky to have such scientific training. Joe-public doesn’t and it is disgraceful that most of the science that people are exposed to in the popular press is of such a low standard, infact very often completely erroneous. The public seem to trust this information and turn against the “establishment” which they seem to perceive as pulling the wool over their eyes, being part of a big conspiracy.
Your article highlights how although some cases of pseudoscience may amuse us by their sheer absurdity (McKeith etc), some is practically fatal. Its time more of us stood up for the good science we know is backed up by solid research. The “other side” get angry and indignant when questionned, thank god we have people like you but this article should spur more of us on to fight the good fight and stand up for the science we believe in.
Soap box over…
stinkychemist said,
January 4, 2009 at 12:40 pm
This all makes me sad. I’m not quite sure why, though. I think it’s the idea that somebody will mislead other people to the hearer’s detriment that upsets me. I tell young people the things that I know will keep them safe, or safer, but I just don’t know what other dumb stuff is heading their way. I made a comment in a lesson a couple of months ago ridiculing “light therapy” and “crystal therapy”, at which point one pupil announced that her mum is a crystal therapist.
“Deniers” seem a growing movement nowadays, holocaust, AIDS, moon landings…..
Perhaps it’s a denial gene. Maybe we should be told. Perhaps in the Telegraph – ‘scientists identify denier gene – “It’s not my fault, it’s hereditary” said Peter Duesberg.’
111 trichloroethane said,
January 4, 2009 at 12:43 pm
“the science we believe in”
I used to have a continual argument with a advocate of all things ‘alternative’, that science is more than the belief system which he claimed it to be.
snoozeofreason said,
January 4, 2009 at 1:39 pm
Another great article from Ben, but could we possibly declare a moratorium on the word “denialist”.
If a denialist was simply someone who denied something or other then there would of course be no problem (apart from the fact that it could be applied to anyone who holds any opinions at all). However the concept of “denial” has another meaning, which it has inherited from the less evidence based areas of psychology, and which is used to imply that disagreement is a symptom of some psychological imbalance.
This kind of woolly, ad hominem, attack is a strategy that is used by pseudoscientists to side-step the requirement to produce proper evidence for their opinions, and it would be best to leave it to the pseudoscientists.
I’m not of course suggesting that the AIDS deniers are right, nor would I necessary disagree with the suggestion that they are a bit bonkers, it’s just that the concept of “denial” is one best left in the dustbin of intellectual history.
dg_rationalist said,
January 4, 2009 at 4:28 pm
snoozeofreason
Ben was using the term “denialist” in its first sense (i.e. as a term to describe those who consistently reject the best explanations for a physical phenomenon or for any other objective fact). The second sense has Freudian origins (see en.wikipedia.org/wiki/Denial). Given the fact that the tenets of Freudian psychology are unfalsifiable it would no bad thing if the second meaning of the word “denial” just withered away. Any “straw-man” attacks by AIDS denialists would be given the derision it deserved. Causing offence to AIDS denialists should be the least of our concerns.
snoozeofreason said,
January 4, 2009 at 6:19 pm
dg_rationalist
I’m sure that Ben was using the term in a respectable sense. But I don’t think that you can shake off the Freudian baggage that it has acquired that easily.
For that matter even the first sense of the word makes me feel a little uncomfortable because it still carries the implication that anyone who disagrees with you is wilfully ignoring the best evidence for some strange reason of their own. It may well be that they actually are doing that, but it’s still an ad hominem style of argument.
A better way of conducting the argument is simply to explain what the best evidence is and leave speculation about people’s reasons for ignoring it to those who like to speculate.
snoozeofreason said,
January 4, 2009 at 6:28 pm
dg_rationalist
Further to previous post. I’m not worried about causing offence to AIDS denialists either. However an argument that appears calculated to cause offence can appear unconvincing to anyone who genuinely has not made up their mind.
My suggestion is that rather than wait for the second meaning of the word ‘denialist’ to wither away we should just find some other word that does not have the same baggage.
The Biologista said,
January 4, 2009 at 10:29 pm
Quicksilver,
en.wikipedia.org/wiki/HIV#Origin
and
en.wikipedia.org/wiki/AIDS_origin
Enjoy!
fontwell said,
January 5, 2009 at 1:17 am
These denialists and the like – I am always reminded of the question “What would it take to make you change your mind?” – if the the answer is “Nothing could do it” then it is not based in rational thought. The thing is, you just can’t make them see that it makes no sense to hold an idea for no reason. I have a sister who is like this, thankfully most of her ideas are harmless, but she just can’t see/won’t see that the rational evidence based way is anything more than just another optional lifestyle choice. I honestly have come to think that there is a piece of their brains missing, in the same way that I don’t have the bit of brain that can find pleasure or beauty in Shostakovich or any form of dance.
whatistruth said,
January 5, 2009 at 2:51 pm
This topic and discussion is frightening and fascinating.
Frightening because as a result of misinformation, the suffering of large numbers of people is being made worse. Fascinating because it reveals something of the fragile nature of truth.
Good science (advancing knowledge based on verifiable evidence) is always in a state of flux. Few researchers ever say ‘Now we know’, because study results often pose more questions than are answered. Deciding at which point something is actually ‘known’ can be tricky, and I suspect not all denialists are actually evil (though some may be). Some could simply be unwilling to swallow unquestioningly (for example) the ‘truth’ of large pharma companies, or the ‘truth’ of epidemiologists, whose modeling of HIV prevalence has recently been called into serious question by ‘mainstream’ scientists.
Sadly, in the case of HIV, the body of evidence confirms ART does reduce mortality, morbidity and infectivity. AIDS ‘denialists’ fly in the face of valid and reliable research findings. The resulting – and very public – disagreements about what may be ‘true’ is confusing for many, and fatal for some.
rob_n3ikc said,
January 6, 2009 at 1:54 am
I have to add, as someone who works on HIV drug design, this sort of nonsense really makes my blood boil. (well figuratively). I mean between extraordinary chemists, great crystallographers and mediocre computational chemists like me we’ve reached the stage where the ***** inhibitors can be seen in atomic resolution in complex with the protein targets (protein structures that look like small molecules google Irene Weber’s group) and are of such high affinity that simply measuring the Ki (e.g. how tightly they bind) is really difficult. It is a fantastic example of “evolution in action” (well maybe evolution vs. intelligent design (ours not some deities)) where as we come up with working drugs the virus responds by selection for resistant variations.
In some ways I wish these people would rediscover the “magic bullet” of 19th century medicine – calomel – (Hg Cl2 – If i remember my chemistry) – they’d do less harm that way.
zickx009 said,
January 6, 2009 at 6:30 am
Auto Immune Deficiency Syndrome = AIDS /= Aids
zickx009 said,
January 6, 2009 at 4:30 pm
EDIT (whoops):
Aquired Immune Deficiency Syndrome = AIDS
warhelmet said,
January 6, 2009 at 10:05 pm
Oh dear.
Am I right in thinking that some people who have been diagnosed as HIV-positive have been charged and convicted of crimes when knowingly having unprotected sex with people who later develop AIDS? It is interesting to note that Maggiore was not prosecuted for actions that almost certainly caused her child to develop AIDS yet medics were struck off for not documenting the offer/denial of HIV testing.
I think Maggiore was a very bad person. Maggiore’s actions lead directly to the death of one person. Natural birth over c-section, breast feeding for three years, inspite of evidence and advice.
I can accept an individual with no ties, no responsibilities deciding that, yes, they will go the woo! route, but… if there is family? I’ve been quite strong with my family in some ways. My parents are told to go and see their GP rather than trust to their copper/magnetic bracelets. I will not even allow them to argue with me. I would rather that my parents irritate their GP with minor stuff than they do the self-sacrifice stuff and then drop dead of something undiagnosed but treatable.
And this is the realm that Maggiore needs to be judged. Your cousin, your neice/nephew, your grand-child is sentenced to death by another member of your family. How tough is that to deal with? Meh, I’ve heard of it but not seen it first hand. On the other hand, my sister has deformation of the skull due to pertussis.
warhelmet said,
January 6, 2009 at 11:23 pm
What if everything to you knew about various other stds and blood borne infections was wrong?
What if everything that you know about tb is wrong?
What if everything you knew about various sarcomas was wrong?
What if stuff that you could see via electron microscopy was wrong?
What if so many other things were wrong too?
Whatever.
Sadun Kal said,
February 21, 2009 at 3:24 am
Dr. Goldacre,
In case you didn’t know, your article on the Guardian has been criticized here:
“Scientifically illiterate science pundit: Ben Goldacre”
hivskeptic.wordpress.com/2009/01/18/scientifically-illiterate-science-pundit-ben-goldacre/
I would be interested in hearing your thoughts on that.
djh said,
June 18, 2009 at 5:54 pm
re: Sadun Kal
‘I would be interested in hearing your thoughts on that.’
Me too.
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