I've been annoyed for a long time about the MMR autism scare. Well, annoyed is an understatement; I'm between furious and thoroughly discouraged about humanity at the combination of scientific ignorance and sensationalism which has created a "controversy" where none should exist. The artificial controversy is not just a matter of academic interest, it has serious medical consequences. It has led to an epidemiologically significant proportion of parents refusing to let their children be vaccinated against measles, mumps and rubella, which means these diseases are becoming prevalent again. That means children are at risk of permanent disability and death from a cause which is almost completely preventable.
I can't do anything about this, not even on the small scale where my actions would have any effect anyway. Because the story has been presented as a controversy, anything I might say about the topic is taken as taking one side in a polarized debate. There are plenty of people who feel equally passionately that MMR might cause autism, so people can pick either view based on who has the strongest arguments or the most emotive rhetoric. But the prevalence of the wrong view here is lethal.
Just this week, I was following links from LJ to news stories, and I learned that the whole idea of link between the triple vaccine and autism was invented by unscrupulous lawyers. It's not only that the original study which showed possible evidence of a link was over-hyped to a ridiculous point, because people don't understand about sample sizes. It's that the original study was fabricated, because the charlatan calling himself a scientist was paid to generate data that would be favourable to the legal case so people could make money by suing health providers.
I'd heard rumours about the payments before, but I'd interpreted it charitably as someone who had a particular pet theory and was willing to take money from whomever would provide it to pursue an unpopular hypothesis. But now it seems the unspeakable scum who "funded" the original "study" even went as far as paying the referees to accept a weak paper. So, not just one person but quite a number of people were willing to pervert legal justice, and scientific integrity, and expose the whole population, especially children, to unnecessary and potentially lethal risk. In effect, they were willing to kill. And for what? Not for career advancement, not for self-aggrandisement, not even because of getting overly attached to the first interpretation of preliminary data (though I think the prime culprit probably had those bad motivations as well), but for money.
I suppose one advantage of this thoroughly nasty business is that it might be obvious enough to make people belatedly wake up and realize they have no reason to be scared of the MMR vaccine. If the causing autism thing was obviously faked, and the people behind the fake are obviously, melodramatically evil, that's perhaps easier to grasp than the idea that the original data possibly suggested a link but later, more detailed analysis showed that the evidence doesn't stand up. With all the controversy and its wide-ranging legal and medical rammifications, the absence of a measurable link between the vaccine and autism has been demonstrated more thoroughly than just about any other attempt to prove a negative in all of scientific history. It's a pity that so much research effort has gone into refuting something which should never have seen the light of day in the first place, but it is absolutely and convincingly refuted.
One part of the problem is that detailed scientific evidence against the original shock story isn't headline-grabbing. It's much more romantic to believe in a few brave souls fighting against the evil medical establishment to protect children from the nasty vaccine, than to appreciate that the original data doesn't hold up to scrutiny. But if it was all fabricated in the first place, by vile scum who care more about financial gain than human life, it's understandable and not at all surprising that subsequent work showed it was baseless.
So, a combination of scientific forgery and unscrupulous media reporting led to a lot of people believing that being vaccinated against measles, mumps and rubella simultaneously would cause autism. As a result, about 1 in 5 of the children who would otherwise have been vaccinated in the last ten years have not been vaccinated. This means that the population immunity is below the critical threshold; unfortunately, this means that even those who are vaccinated are at increased risk because no vaccine is perfect, so you need a big enough proportion of the population to be vaccinated so that the disease can't spread. At least one child has died of measles in that time; maybe he would have died anyway, but no child in the UK died of measles in the decade before the controversy broke.
I think the problem goes deeper than just people holding false beliefs about the vaccine, though. Part of the issue is that people think that measles, mumps and rubella are just minor ailments that lead to nothing worse than feeling miserable for a few days, whereas autism is this big horrible scary thing. I think it's important to emphasize that autism is neither infectious nor lethal, unlike measles and mumps. And that in turn is part of the stigma against mental illness and intellectual disability, which leads to horrors like this. (Thanks to rho, for making me despair of humanity even more than when I started writing this post.)
Sorry to be pedantic, but I'm getting quite a lot of strangers visiting this post, and I want to make sure that the message is clear. When you say that there is a threat from MMR, you mean that the actual diseases, measles, mumps and German measles / rubella, are dangerous. You don't mean that the MMR vaccine is dangerous, because the whole point of this post is that it's not.
*nods* - agree re MMR + ASD not being linked in any way shape or form
but whereas autism is this big horrible scary thing. I think it's important to emphasize that autism is neither infectious nor lethal, unlike measles and mumps.
Autism + other ASD can be big horrible scary things. No, it's not infectious, nor usually lethal (ASD diagnosis increases by four-fold the chances of depression + there's a higher than normal suicide rate amongst people with ASD anyway), but it will have a life long impact on someone's life. The extent of the impact varies considerably (far more so than with measles, mumps & rubella where complications are relatively rare).
Measles itself is unpleasant, but the complications are dangerous. Six to 20 percent of the people who get the disease will get an ear infection, diarrhea, or even pneumonia. One out of 1000 people with measles will develop inflammation of the brain, and about one out of 1000 will die.
Why is vaccination necessary?
Before the measles vaccine became available, there were approximately 450,000 measles cases and an average of 450 measles-associated deaths were reported each year.
I know. As I said, I was pretty distressed already about the way the whole business was reported. But this level of actual direct corruption is really shocking.
The full details of the scandal are pretty recent, last week's news. There have been rumours since 2004 that money from the legal fund changed hands, but the fact that people with a vested interest funded the research doesn't necessarily invalidate the research. Now we know the amounts involved and who was paid (I can't get over that they paid the referees to accept a bad paper!), it's much more clear-cut that it was actual direct corruption rather than just weak science.
I'm not familiar enough with your site [newbie] to know your affiliates, but in the autism community, it's a pretty fierce debate at the moment, both in the UK and in the States. There seems to be little common ground between the opposing forces. Best wishes http://whitterer-autism.blogspot.com
Welcome, pleased to meet you. And thanks for the link to your blog; your writing is really lively and you have a very fine wit. How did you find this post, by the way?
I don't want to start an argument with you when I've only just met you, but I'm afraid that the reason there is a debate within the autism community is exactly the same as the reason why there's a debate in the wider community: bad and science, media sensationalism and scientific illiteracy. For questions like what services autistic people need, or what it's like to be autistic, I would definitely give more credence to people who have direct experience. But when it comes to the question of whether the MMR vaccine causes autism, the people who know what they're talking about are the virologists and epidemiologists, not autistic people and their caregivers.
There are many things that are worth debating, and I pride myself on accepting views that differ from my own. But there should never have been a debate in the first place about whether the MMR vaccine causes autism, and even if there had to be a debate, it has now been conclusively resolved.
There was something I was trying to put my finger on. Is it possible that one aspect of the hysteria is that people (including me) always feel worse for doing something bad than letting something bad happen, so even if the trade off is a good one hate the idea of using a vaccine which could cause a disease, if the benefit isn't immediate.
(Of course, there are lots of other reasons we can all do this, ranging from looking for backdoors round received wisdom to a propensity for a good emotional story to believe in.)
Thank you. It was just an off-the-cuff rant prompted by a combination of a nasty cold with infuriating news. Glad you liked!
Interesting point about why people don't vaccinate. In pure game theory terms, the best for an individual child is not to be vaccinated (because any vaccine carries some level of risk) but for everyone else to be protected so they benefit from herd immunity. I doubt that many people actually make that calculation in cold blood, although there is at least one example in the comments to this post.
But yeah, there could be some productive thinking about how people perceive risk, immediate versus long-term, risks to the people they're close to versus general population risks. The MMR story is very muddied by the media hysteria over a completely non-existent risk, but there are always a few people who refuse other vaccines in the absence of the big scare story.
This whole subgroub who promote fear and try to prevent people from immunising their children are morally bankrupt.
I have a (former) friend who - despite being an otherwise intelligent, rational person - decided not to immunise her children. After repeated discussions, we finally got to the root reason - enough other people do it, so she felt her kids were protected by society.
That's right. Don't bother doing the right thing because you can leave it up to other people who are.
The friendship ended shortly after our kids had a playdate. My daughter wasn't old enough to have had her MMR vaccination yet; hers was, but wasn't immunised. When she rang me to say that *HER* daughter had been exposed to measles, and had therefore exposed mine, I was so angry I could not speak.
Fortunately, that exposure turned out to be a false alarm and my daughter was not harmed. I was willing to continue the friendship, although I was not willing to allow my daughter to play with hers until mine HAD been immunised and was, therefore, protected. She couldn't deal with that.
(As an aside - at that time, in Australia, new parents were entitled to two government payments; the first at birth, the second at 18 months. The second was called the "immunisation allowance". My kids, despite being fully immunised, were not eligible for the immunisation allowance due to our income. Her kids, despite NOT being immunised, were. Go figure.)
Welcome, glad you dropped by. But what a horrifying story! I know that in practice people often end up behaving more ethically towards their own than towards the general community, but it's quite rare for someone to make it explicit that they're prepared to screw everyone over for selfish reasons. Most people have a prettier sounding rationalization! I am not surprised you are angry that this person saw nothing wrong with exposing your daughter to a dangerous disease.
I wouldn't place too much faith in people not being unwilling to immunise their children due to the original paper being exposed as a fraud. Once an idea enters the public consciousness it quite often becomes disconnected from its source so that even when the source is disproved. I've heard Deborah Lipstadt speak about her court case involving David Irving. Even after it was proved in a UK court that none of his work was reliable, it still influences public opinion because it was used by other people before he was exposed. It's influence is still present in sources as varied as the play Copenhagen to mainstream views on the bombing of Dresden.
Depressingly, I think you're likely to be right with this. If you manage to convince people there is a legitimate debate / controversy about an issue, you've won half the battle. I was thinking of the Irving comparison too, but decided to leave it out of my post because I didn't want to Godwin the discussion. Similarly the creationism / Intelligent Design "debate"; it doesn't really matter which position people take, they are still supporting the creationists by taking their views seriously as something worth arguing against. I guess I was trying to find some reason for optimism over a story that really upset me.