This is a transcript of a talk given at the 2007 Skeptics Conference. Parts of it were also published in the NZ Family Physician in early 2007. This paper can be found at www.rnzcgp.org.nz
Why do immunisation programmes create such a vast amount of virulent anti-rhetoric? Clearly, the science behind the fact that national immunisation programmes have had such a significant effect on disease rates is overwhelming. “Vaccines have prevented more deaths, disability and suffering than any other medical discovery or intervention” (FE André, in Vaccine 19, 2001). When the US Center for Disease Control reviewed milestones for the millennium in 1999 they made a list of what they considered to be the 10 great public health achievements in the US in the 20th century. Vaccination was listed number one, ahead of motor vehicle safety; safer workplaces; control of infectious diseases; decline in deaths from coronary heart disease and strokes; safer and healthier foods; healthier mothers and babies; family planning; water fluoridation and recognition of tobacco use as a health hazard.
Despite the science there remains a loud anti-voice that has accused vaccines of causing practically any disease or disorder noted in the medical literature and then some. As an example, in a 1996 workshop on risk communication and vaccination Barbara Loe Fisher, the co-founder and president of the National Vaccine Information Center, commented:
“And so the haunting question remains: just how many are being sacrificed? How many of the mentally retarded, epileptic, autistic, learning disabled, hyperactive, diabetic, asthmatic children in the inner cities and the suburbs and the big and small towns of America are part of that sacrifice?”
Having been involved in immunisation communication issues for more than 10 years I can see there are a range of reasons for this polarised response.
Firstly science comes a poor second to the emotions of personal experience. Barbara Loe Fisher again:
“You cannot be in the presence of a profoundly vaccine damaged child and not know that child could be your own.”
Horrendous pictures and stories of suffering and dying children purported to have vaccine damage are much more gripping and memorable than statistics, confidence intervals and graphs. I may personally weep at the sight of the New Zealand epidemiology graph showing the dramatic drop in Haemophilus influenza rates in NZ children following the introduction of the vaccine in 1994, but the majority of less-nerdy kiwis are much more captivated by a dramatic personal story in a magazine.
Secondly, there is the coincidence factor. When the majority of children in a population are vaccinated there will be a range of illnesses that arise coincidentally at the same time as the vaccination by chance alone. If you or your family has a child who has a cot death, or a convulsion leading to brain damage in the day or two after a vaccine with no other known cause it is very difficult not to assume the vaccine is to blame. The World Health Organisation, in their guidelines for managers of immunisation programmes on reporting and investigating adverse events, tried to describe how powerful the coincidence factor can be. They noted that for a standard New Zealand birth rate we would by chance alone see three deaths in the day after an infant pertussis-containing vaccine was given, and 20 deaths in the week after the vaccine was given.
Thirdly, never underestimate the staying power of the anecdote. The most recent example is the MMR vaccine which was allegedly linked to autism in a press conference by a gastroenterologist, Dr Andrew Wakefield, in 1998. There was never any scientific evidence for his statement; it was purely his opinion at the time. Despite overwhelming evidence since from a large body of scientific evidence showing there is no link, this myth lives on in the minds of many people throughout the world. Rates of MMR vaccine have never recovered and the UK is now seeing outbreaks of measles as a result of a myth leading to the loss in confidence in this vaccine.
Fourth, immunisation is a lousy product to market. The product is actually the absence of disease-the better you do with vaccine uptake, the less disease you have. The less disease people see the less convinced they are that the diseases were a problem, or that they really existed in the first place.
There are a range of other reasons why New Zealanders in particular have a particular grouch with immunisation programmes.
We are, on the whole, a pretty anti-establishment, anti-authority bunch. If you tell me the government wants me to do something I am very inclined to be suspicious of their motives. Maybe this is our pioneering spirit living on, and in many ways it is one of the joys of living here. However, it also has its down sides as we are more likely to criticise and be suspicious of, than have faith in the Ministry of Health when they come out with new public health programmes.
Further to this we tend to be on the side of the ‘little guys’; the David versus Goliath approach to life. Maybe this comes from a small island mentality. While once again it is good to have the little guy fighting spirit in our psyche, it does at times extend to giving a large amount of voice to charlatans and crackpots who have at times been given as much credibility and media space as the scientific basis to our vaccination decisions. I find it extraordinary that I can be asked on national television to debate the finer points of vaccine safety with someone who has no clear understanding of what a confidence interval is, or how a randomised controlled trial works. This is a bit like giving me credibility to be a spokesperson on nuclear physics, of which I have no qualified background at all.
Adding to our difficulty is that, in general, the population has a very poor understanding of the scientific method and how it is used to accumulate the body of evidence that is used to develop, implement and monitor the use of vaccines in the immunisation programme. Numerous times I have been told that unvaccinated children are healthier than vaccinated because that is someone’s personal experience. I have had angry mothers yelling at me that their unvaccinated children have never had antibiotics in their life. It does not help to reply that my fully vaccinated 12-year-old has also never had antibiotics in her life, and that this is somewhat irrelevant to the vaccination issue. To try and explain a population-based study is beyond many people’s understanding. I suspect there is very little of this science taught at school level.
Contributing to our poor understanding of the scientific method is the popular expectation that science will be 100 percent accurate and effective at all times. Bit of a tall ask really. Vaccines will never be 100 percent effective or 100 percent safe, nor is any other aspect of life! In taking your child to the surgery the risk of being injured or killed in a road accident is much higher than the risk from the vaccination, but that has not yet stopped us putting kids in cars. Understanding risk ratios is a tricky communication exercise. Does anyone really grasp that a one in a million risk is minuscule. As one of our staff said, “that is all very well, but what if that one in a million is my child?”
The tools to help us in imparting the scientific method are somewhat overwhelmed in the modern media age. If you google immunisation you will get 14 million hits in 0.1 of a second. We don’t lack material, but there is absolutely no quality control on vast amounts of it.
The influence of the media in dictating what we are exposed to and what we absorb is also very powerful. A New Zealand study by T Jellyman and A Ure of health professionals’ knowledge of immunisation in 2003 showed that very few health professionals thought they were influenced by the media, yet more than a third (36 percent) of the 236 surveyed were unsure if MMR was implicated as a cause of autism. Since the alleged MMR links to autism are not science-based at all, but media-related, the authors commented: “One can only suspect that even for ‘science-based’ providers the general media are more influential than may be given credence.”
To make communicating the science of public health somewhat more difficult the drivers for the media are very different from the drivers for public health. Media drivers are essentially the need to sell the story, and while many very credible journalists do a great job, they are primarily driven by the need to make a successful story that will interest a reader. Frequently dry public health issues will not do that. Large, sleep-inducing, population studies showing vaccines do not cause … SIDS, asthma, diabetes, epilepsy … are not stories that even make the small print.
Even with excellent articles on vaccines we have, at times, been hit by the subeditor’s need to put a dramatic headline above a story, one that may have little resemblance to the real story. Vividly I remember the large headline in the NZ Herald on the day of the launch of the MeNZB vaccine for under five-year-old children in Auckland. “Dispute over vaccine risk goes on”-despite the actual article quoting the Health Research Council’s Independent Safety Monitoring Board stating it “found no issues of concern…” The fear this inflammatory headline engendered in many Auckland parents, resulting in many delaying or refusing vaccines, was heartbreaking.
Underlying many of the above concerns, however, I feel there is a bigger issue at stake here, and it is about power and powerlessness. This can take many forms. The first one is female powerlessness in a male-dominated world. For many years medicine has been a male-dominated profession. Immunisation at times appears to be pigeon-holed into an artificial, male, nasty, drug company, money-dominated world versus the softer, female, natural, nurturing, caring, approach.
Powerlessness also comes in other forms. In a world of great uncertainty, when we have very little control of the world around us, for our children or ourselves, the scientific method with all its uncertainties and all its lack of absolutes can be very hard to really believe in. Pseudoscience with its quick fixes and its absolute confidences is a much more attractive option. I recently had an anti-immunisation lobbyist write to me “you may think you are right, but I know I am right.” I am stunned with his absolute confidence, and I daresay it makes the world a more secure place for him knowing he is right. I would love to believe in Harry Potter’s magic (though only if I could be a magician not a muggle).
A sense of powerlessness in this big, ugly, out-of-control world also leads to paranoia and anti-establishment fear.
“In all the panic and hype, media hysteria and public fear over this disease, the truth has often been left behind. You may not be aware of some facts in this leaflet, but we think you need to know some of the things you haven’t been told about meningococcal disease and the new vaccine.” (Immunisation Awareness Society, 2005.)
The anti-immunisation literature is packed with discourse such as this around the great conspiracies that governments are practising, often in cahoots with drug companies and corrupt academics.
Finally, with our sense of powerlessness there is genuine well-placed fear, based on historical examples of science stuffing up, getting it wrong, making mistakes, and even at times trying to cover up their errors. We have examples in the history of vaccine development where errors have occurred-the most significant for the New Zealand population was a virus called SV40 that contaminated many batches of polio vaccines in the late 1950s and was given to many thousands of New Zealanders. This virus has been linked to cancers and, while it has not been shown that this ever occurred with these batches of polio vaccine, this was a valid fear. While science and quality control has improved light years in the past 50 years, issues such as this are still possible.
However, having looked at my long list of reasons why New Zealand is so suspicious of our immunisation programme I wonder if actually the overwhelming reason is a deep-rooted fear of needles. I always found it interesting that the vaccine that had the greatest adverse event concern was actually the oral polio vaccine. As New Zealand eradicated polio we had a risk from the vaccine (paralytic polio occurring in approximately one in 2.5 million cases), versus no risk from the disease. Ethically, therefore, I consider it was unacceptable to continue to use the oral vaccine when the risk of polio was controlled. Because of this issue New Zealand moved to use the inactivated polio vaccine, which does not have the same risk. I never heard any anti-immunisation group demand the removal of the oral polio vaccine. Why not?
Perhaps, simply because it was an oral vaccine.
Immunisation programmes are an incredible success story, they have made a huge difference to children’s lives; we have fantastic science and the potential to do even better with vaccines. However, there will be little gain in disease control and eradication if, despite the great science, the consumer does not want the product.