Doctors and scientists have lost yet another battle in the war over vaccines.
On 25 August, the US Institute of Medicine released a report on the “adverse events” of eight childhood vaccines. The report summarized the exhaustive evidence on the possible negative health consequences of eight vaccines recommended for children, including the vaccines that prevent measles, mumps and rubella (MMR); diphtheria, tetanus and pertussis (DTaP); chickenpox; and human papilloma virus (HPV).
That’s right: in the midst of the most heated anti-vaccine campaign in history, a committee of the nation’s leading scientists and doctors decided to produce a detailed, graphic summary of all the health problems that vaccines cause.
The report encapsulates so many of the mistakes that scientists make when trying to communicate with the public – mistakes that have created a societal climate that embraces “vaccine skepticism” as an acceptable mark of well-informed parenting.
Never mind that the report found that most vaccines are very safe; that they rarely cause serious health problems; that these most serious problems usually affect children who have pre-existing immune system defects; and that the MMR vaccine does not cause autism or diabetes.
Those findings aren’t going to convince anyone who was already a vaccine skeptic (such as some Facebook readers who commented on my Nature News story about the report.) But sadly, the report missed a crucial opportunity to arm parents who are “on the fence” with much-needed facts to combat the mistrust and bad information about vaccines that is undermining public health in America today.
The report includes hundreds of pages filled with nerve-wracking case reports about individual children who suffered grave injuries and even death after vaccination. But there is nothing in the report to help a parent put these difficult cases into context – no similar anecdotes of the horrendous, preventable suffering that can be averted by vaccines. Nor does the report provide any estimate of how rare these events really are. The report merely notes that “the committee was not tasked with assessing the benefits (effectiveness) of vaccines.” (Emphasis in the original report.)
Further, the language of the report is nearly nonsensical. The committee decided that in some cases, “[e]vidence convincingly supports a causal relationship” between the vaccine and a particular adverse event, while for others, the committee said, “[e]vidence favors acceptance of a causal relationship.” These phrases have no meaning in science, let alone in real life. Those parents who actually take the time to look at this report – admittedly, few probably will – will probably come away from it more rather than less confused.
These missteps are typical of mistakes that scientists often make in communicating with the public. Few researchers are eager to jump into controversial debates, arguing that the subject matter is outside their area of expertise. And when called to step somewhat outside their comfort zone, they too often erect a wall of impenetrable jargon between themselves and the public.
Most sadly, scientists often prefer to focus narrowly on whatever task is at hand rather than thinking about how non-scientists will view their work. I do understand that this report needed to focus on vaccine adverse events because it was requested by the US Health and Human Services Department’s Vaccine Injury Compensation Program, which pays people who suffer certain health problems linked to vaccines. The program was looking for guidance on what sorts of vaccine injuries it should cover; thus, it didn’t ask the committee to compare risks and benefits of vaccines.
But only someone who is completely out of touch with today’s society would fail to realize that such a report needed to be thought out and presented much more carefully than it was to avoid fueling the anti-vaccine panic that is raging across the country. Vaccine-preventable diseases are re-emerging, children are dying, parents cannot go a week without hearing other parents casually assailing the safety of vaccines at the playground or on the Internet, and families are pressuring new parents not to vaccinate their babies.
The Institute of Medicine committee gathered 16 eminent doctors and public health specialists who truly care about protecting the nation’s children against vaccine-preventable diseases. Didn’t any of them realize that it probably wasn’t a good idea to release a report that focuses so myopically on the drawbacks of vaccines in today’s increasingly anti-vaccine climate?
Apparently not. And that is why we are losing the vaccine war.
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Photo: A typhoid innoculation at a rural school in Texas; April 1943, by John Vachon for the U.S. Farm Security Administration, via Wikimedia Commons.
Ok, Erika, now I’m mad too. So the report was commissioned, they had to do it, then they had to release it publicly. That’s all true. Like my friend ran out of gas, I bring the gasoline and put it into his car, not noticing that the car is on fire. “Blinkered” would be the kind word.
Excellent points, Erika. I wrote about this very problem for PLoS Biology a few years ago, http://bit.ly/zrLTl, and why scientists aren’t getting through to normal parents (stipulating that the diehards who think vaccines do more harm than good don’t care about the evidence). I thought I was prepared for all the hate mail I got–until I got it!
Quoting: “Most sadly, scientists often prefer to focus narrowly on whatever task is at hand rather than thinking about how non-scientists will view their work.”
While this is obviously true, wouldn’t it be the responsibility of the media to bridge that gap? The general public is not the (direct) audience of a scientist.
You are losing the vaccine war for several reasons, not foremost of which is the release of this report.
Vaccine manufacturers are shielded from liability. Why? Without this shielding, they would not produce their product because the cost would be too great.
Perhaps that point is lost on you – but the answer is right there in capitalist black & white: the cost of these vaccines are greater than the benefit.
Ann – I couldn’t have said it better myself!
Liza – That is an excellent article – thanks for drawing my attention to it.
kjw – Scientists do not *think* the general public is their direct audience, but the Institute of Medicine’s report is available on the Internet for anyone to read. Professional media is also an ever-smaller portion of the societal conversation about vaccines and everything else, due to the rise of the Internet, the decline of mainstream publishing, decreasing trust in the media, etc. So scientists cannot expect the media to buffer them from direct interaction with the public; the fact that many scientists are afraid/unwilling to engage with the public is a major reason that vaccine skepticism thrives.
Joe Science – The fact that we live in a litigious society does not mean that vaccines are unsafe.
The “context” of vaccine injuries is not the polarization needlessly and cruelly promoted here.
The “context” should be giving vaccine injuries the same ethical weight, responsibility and financing as prevention of disease.
The death of little Ian Gromowski from a vaccine is just as tragic as that of an unvaccinated child dying of measles, and should not be dismissed as an inconvenience.
Vaccine injury victims receive no treatment, their families receive no help or product warranty, and members of the social compact receive no reassurance that vaccine injuries are studied for purposes of prevention.
Vaccination rates will decline as long as policymakers and columnists continue to heartlessly write off vaccine injury victims as simply collateral damage in the war on disease.
What would you propose as a concrete alternative approach to the publication of such studies?
I favour a requirement for a short, pithy alt abstract that gives the practical, real-world implications of any study relevant to the health of the public. Written in normal language. A bridge to the public, instead of the barriers we usually create.
Forcing authors to give the relevance of their work to the rest of the world might even change the way they plan their future studies.
Thoughts?
This illustrates the issue of explaining risk to a public, where there is no case of zero risk in day to day living.
One lesson, as Joe indicates above, is that there is NO evidence that will convince some people. Civilization is a thin veneer and those who don’t want to participate have fewer options. While our ability to live in large cities depends on vaccines, many want to be able to do whatever they want to do.
Perhaps if those parents who lost children too young to be vaccinated or not able to be because of underlying health issues were to take the approach above and sue those free loading on the system, it could help, but I would hate to see it.
nhokkanen: “The death of little Ian Gromowski from a vaccine is just as tragic as that of an unvaccinated child dying of measles.” Any child’s death is heartbreaking. That is why I think the Institute of Medicine report should have discussed the many, many individual deaths that are *prevented* by vaccines as well as those that are caused by vaccines.
It is also not true that vaccine injury victims’ families are not compensated; this is what the Vaccine Injury Compensation Program does.
Angus: I agree that asking scientists to think from the beginning about how they are going to explain their work to the public could affect how they plan future studies. A pithy abstract written in normal language is a great start for most papers. For this particular study, though, more needed to be done. For example, there is a section (Chapter 13) that attempts to answer how “rare” some of the adverse events are, but most of it is impenetrable.
Steven: I, too, hope that there is a better solution to this problem than all-out litigative warfare.
I like @Angus Thompson’s idea about requiring a “plain language” abstract and discussion of real-world implications for medical studies. It won’t solve all the problems of medical communication, but could go a long way towards improving the dialogue between medical researchers and the public they serve. Er, starting the dialogue, I should say, and ending the monologue that has been going on too long and unhelpfully.
@nhokkanen, I don’t think the author is dismissing or diminishing the tragedy of adverse reactions to vaccination. And I know she isn’t heartless. Harmful and fatal reactions are as old as vaccination itself: and the possibility is gut wrenching to every parent, and devastating to the families who are directly impacted. Medical and financial support for those victims certainly seems like the least society should do, though I’m afraid I don’t know the state of those affairs in the USA, where I gather this issue is most contentious. And I don’t think anyone is arguing against careful study and aggressive development to produce safer, more effective vaccines.
The fact remains though, that for the common childhood vaccinations the risk of adverse reactions in individuals is very small compared to the benefit of disease prevention for the vast majority of recipients and society at large. (“@Joe Science” is already a misnomer, but at least he didn’t claim “@Joe Economics”–sheesh!) The rarity of adverse reactions in no way diminishes their tragedy, or the value of the lives lost. But neither does the reality of adverse reactions tip the ethical balance away from careful, judicious, well-studied mandatory vaccination.
Reality check:
– The NVICP is a failure, with 80% of cases tossed out, and countless others unreported.
– VAERS is a failure, with perhaps 10% of vaccine injury cases reported.
– Most doctors do not recognize subclinical signs vaccine injuries; even strong adverse reactions can be misinterpreted.
– Unchecked capitalism a la “The Corporation” mindset has already tipped the “ethical balance away from careful, judicious, well-studied mandatory vaccination.”
So vaccine program failures grow unchecked while policymakers demonize theoretical “anti-vax” straw men rather than look to their own biases, blind spots, managerial failures and conflicts of interest.
nhokkanen: I agree that doctors, scientists and governments should do everything they can to better detect vaccine adverse events and to make safer vaccines. In fact, they are already doing a lot on these fronts; you can read about this in a recent article by my former colleague Roberta Kwok.
Taking the topic a bit afield, I would like to ask people’s opinions on a related matter. Vaccines are commonly accepted, despite a very low number of people that suffer adverse reactions. Yet other drugs are often taken off the market because an equal number of people suffer adverse reactions. I am NOT saying vaccines should be stopped, I wholeheartedly support them. What I am asking is why do we take these other drugs off the market? As an example, my father was on a medication (I forgot exactly what, he took many). It worked very well for him with no side effects, but it was pulled off the market because a few people had serious problems with it. Unfortunately, the only available replacement was a drug with such bad side effects he stopped taking it. Wouldn’t it make more sense to keep such drugs on the market for those that can use them and work to find out which types of people should not take them, so they can be given something else?
Hi Erika,
Great Post, Thanks.
What helped my family immensely was a book published by the Canadian Pediatrics Society “Your Child’s Best Shot”. It was recommended to me by many different people in the medical community when our son was born. It’s excellent as each chapter focuses on a different illness, first describing the illness, its symptoms, risks, etc., and then the vaccine in detail. This way, an informed parent can weigh the experience public has had with the diseases vs. the vaccines.
Joe – you raise a profound question that goes to the heart of how regulators evaluate risk, and I don’t have the expertise to answer it without doing some digging on the subject, which I now intend to do.
Lisa – thank you for that helpful recommendation!
People play the lottery even though they only have a one in a million chance of winning. So why do they do it? It’s because they know that someone is going to win and the rewards of winning are very high while the cost of losing is negligible.
Vaccinations are sort of an inverse lottery. You only have a one in a million chance of losing, but the fact remains that someone is going to lose, and the cost of losing is devastating whereas the reward is difficult to perceive.
So people are leery of taking that risk.
Even though we know statistically that cars are far more dangerous than vaccinations, there is a fundamental difference between them. When you get behind the wheel of a car you know that your actions have a great influence on the outcome. If you drive safely and you stay alert you will probably remain unharmed. But with a vaccination you have no control over the outcome, you are rolling the dice and hoping for the best. Thus people feel helpless, which heightens their perception of risk.
And the risk is very high, not only is there the risk of brain damage and even death for the child, but there has also been at least one documented instance in which the parents were accused of murder and sent to jail, because their child died of brain inflammation. This was still in the early days when not much evidence had surfaced yet of the potential for adverse reactions to vaccines, so instead it was assumed to be a case of physical abuse.
You wonder why people distrust the medical community? Well, they do not exactly have a sterling track record. Your have only to look up the “Tuskegee Syphilis Experiment” for an egregious example. And then there was the H1N1 boondoggle…
http://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment
But let’s talk about something else. The Fact is that we have an epidemic in this country of brain damaged children. This primarily shows up as Autism and ADHD and other learning disabilities. People are justifiably outraged about this situation and looking for causes.
Unfortunately, vaccines have been singled out as a primary cause, and indeed in some instances the vaccines are actually at fault.
But the problem is that once people latched onto the vaccines as being “the cause” they mostly stopped looking for other possible explanations, which results in the number one PROVABLE cause of Autism being ignored and seldom heard of.
Starting in about the 1950’s a change was made by the medical community in how babies were delivered. Despite hundreds of years of accumulated wisdom with regard to the correct way to deliver a baby, doctors increasingly made use of a practice called Immediate Cord Clamping.
In 1991 Immediate Cord Clamping (ICC) became an officially recommended practice in total disregard to the evidence against the practice.
I am not a medical practitioner, but from my reading as an individual, it appears to me the ICC is the primary problem and that to a certain extent vaccines are being blamed for problems that were actually caused by ICC.
For more information about ICC, see these links.
http://www.cordclamp.org/ main site
some specific articles:
How the Cord Clamp Injures Your Baby’s Brain
http://web.archive.org/web/20041010105210/http://www.cordclamping.com/braindamage.htm
A Refutation of ACOG’s Report on Cerebral Palsy
http://web.archive.org/web/20040929080014/http://www.cordclamping.com/acog-cp.htm
The Autism Epidemic
http://www.autism-end-it-now.org/autismepidemic_ppt.htm
——–
This is a documented history of accepted methods, and their rationale, of closing the umbilical circulation after birth
http://web.archive.org/web/20041011050220/http://www.cordclamping.com/History.htm
1801 “Another thing very injurious to the child, is the tying and cutting of the navel string too soon”
1950 “There has been a tendency of late, for a number of reasons, to ignore this precept. … This readily leads to the habit of clamping all cords promptly.”
1982 “Immediate cord clamping can result in hypotension, hypovolemia and anemia …”
1991 ACOG Committee opinion: “Immediately after delivery … umbilical cord should be doubly clamped”
Science initially inflicted this wound on itself by publishing the Wakefield study and then taking so much time refuting and retracting it.
Other than that, though, I worry about letting politics influence how these types of internal factual reports are created. I happen to agree with the political agenda at issue here — increasing vaccine coverage across the population — but what happens when the powers that be have other political agendas? Would you want Sarah Palin or Rick Perry’s federal agencies commenting on the appropriateness of vaccination?
Max,
Politics shouldn’t be part of reports such as this one. What should be included is more of the scientific evidence on vaccine benefits, which won’t change regardless of who is President.