Vaccine Epidemic

A friend, and, I should note, vaccine refuser, recently offered me a copy of Vaccine Epidemic: How Corporate Greed, Biased Science, and Coerce Government Threaten Our Human Rights, Our Health, and Our Children. As a person who follows the vaccine schedule for my children and does not agree with the positions of the those who refer to themselves as in favor of vaccine “choice,” I had hoped to write a review of the book, and in so doing, publish a larger work that demonstrated how scientists develop and study vaccines, and show the anti-vaccine crowd the errors of their ways. But I realized a few things about the issue:

• Epidemiology is complex: vaccine refusers probably don’t understand it very much, and my ability to understand the science is limited;
• Much of what is available to common readers is information designed to convince parents to either vaccinate or not vaccinate; most of us are not going to dig into the annals of JAMA in order to make a decision;
• For some people, this is a religious matter. Writing about it isn’t going to convince some people.

Regarding that last point: I just listened to an interview with John Updike on NPR’s Fresh Air, and Updike stated that writing is an act of aggression. That’s partly true; men and women the world over take to the decidedly more constructive pen in favor of the sword to win their battles. Ultimately, if you “win” with writing, you do so by convincing people of something. That’s what I was trying to do. I also realized that other people are saying what I want to say, but better.

It’s worth reading about vaccines as much as possible if you have to make decisions for yourself or your children about them. The main takeaway for me was that it is worth following your doctor’s (or your pediatrician’s) guidance on the matter. Anti-vaccine campers or vaccine choice advocates, as they like to be called, often pretend or play at being knowledgeable about the subject, but as is often the case with politics, for example, people read sources that confirm their biases and suppositions, and ignore sources to the contrary.

The challenges that face parents attempting to make their own decisions about vaccination are amply evident in Vaccine Epidemic and other sources from which choice advocates find succour:

• The democratization of information, divorced from the experience to understand it;
• relatedly, poor reporting by understaffed press and the increasingly democratized spread of information via independent news sources on the internet;
• a pageview culture;
• lawyers playing lawyerball;
• a premium placed on intuition rather than reason, knowledge, and understanding of the evidence;
• an assumption of a risk-free existence.

In writing this, I had hoped to expose how Vaccine Epidemic embodies the wrong approach to addressing each of these challenges. It’s a larger project than I can hope to tackle, and in reading other sources online and in print it became clear to me that there are people writing about the issue now that are doing a better job of it than me.

Faith, Cynicism, and Unrealistic Expecations

L. Shaka from Vaccine Times reminds us why there’s no reasoning with the anti-vaccination crowd:

These beliefs are wrong and not supported by evidence, however it is clear to see that once one accepts these premises as true, the decision not to vaccinate does follow logically. Their conclusion is wrong, as they are starting with the wrong premises, but they are not stupid or idiots, at least the majority aren’t. They are in most cases just as intelligent, if not more intelligent and educated, than the average person. The only difference between anti-vaccine proponents and pro-healthers is the required standard of evidence. If you really look at it, all disagreements boil down to one question: “What is to be considered acceptable evidence?”

This unfortunately means that it is highly unlikely, if not impossible, to change the mind of an anti-vaccine believer, since in order to do that, you’d have to completely change how they assign weight to evidence, akin to trying to convince a religious person to become an atheist on the basis of rational arguments.

It’s not science or research that drives the movement. It’s more akin to religion or faith. And perhaps that’s why it seems that even conclusions that aren’t especially difficult to arrive at, in fact, never are.

If you read Michael Belkin’s account in Vaccine Epidemic, or Amy Pingel’s devastating story about her daughter, Zeda, who was healthy prior to receiving the HPV vaccine, you might be inclined to rankle at the thought of having your child receive the shot. But if this NPR report is to be believed:

The CDC has examined 35 deaths that occurred among 35 million young people who received the vaccine. It also concluded there is no evidence of cause and effect.

Refusers might castigate the CDC’s conclusions, but 35 deaths in 35 million? If (and that’s an if) you ignore the CDC’s conclusions and assume a one-to-one correlation between the vaccine and cause of death and compare it to the 4,000 people who die of cervical cancer yearly, you have to even still conclude that most sane people would at least consider the shot. I am not inclined to make judgements about sacrificing people — and I can sympathize with parents who would feel that they had indeed sacrificed a child — but if you are considering risk tolerance or calculating the odds of something happening to you or a loved one, those are not unreasonable numbers.

The inverse is invoked in Allen Tate’s discussion of the utilitarian ethic of mandated vaccines, to wit, that there is a “uncomfortable underside” to this conception of vaccination: the notion of sacrifice. But what is never considered is what level of sacrifice must others make to protect choice? In the name of choice, how many must be sacrificed?

There’s the curious, if somewhat common, expectation of 100% safety from anti-vaxers; nothing that isn’t guaranteed 100% safe is not to be tolerated. Consider the advice that Judy Converse, writing for Nutrition Care, gives to parents who face a pediatrician determined to vaccinate their children: demand from your child’s pediatrician that the vaccine is 100% safe:

I have also fully informed my patient/ patient caregiver / patient parent that in case of any injury, adverse reaction, or death sustained as a result of the vaccinations administered at my behest and/or by myself or any of my staff, I hereby make myself personally and fully accountable for any and all costs, losses, and needs associated with said injury, adverse reaction, or death, for the lifetime of the victim, including but not limited to costs of any and all medical care, health care, equipment, rehabilitative occupational/physical/speech or other therapies, attorney’s fees for protection of free and appropriate education (FAPE) as specified under the Individuals with Disabilities Education Act or other civil rights, educational/remedial/tutoring costs, costs of child care, respite care, in home nursing care, long term care, or residential and custodial care, or any costs for any items, care, equipment, travel, loss of income, pain and suffering, or housing associated with this injury, adverse event, or death resulting from vaccination(s) administered by me, by my staff, or at my behest.

I, (Dr. Name), MD, hereby accept all financial, custodial, and medical responsibility and liability, as described above, for any and all short or long term adverse event, reaction, illness, injury, disability or death that may be caused by vaccination(s), which I have administered to my patient on this day (date).

Who expects this much certainty in anything?

Parts of Vaccine Epidemic reveal a cynicism one often observes in politics. It would seem that, on one hand, a criticism of the vaccine schedule is that there isn’t any evidence that it’s effective. So more research must be done. But then, that would be unethical.

Vera Hassner Harav, in “Medical Ethics and Contemporary Medicine”:

A public policy that puts the well-being of a child at risk—-for the good of others or, more likely, for commercial reasons—-violates fundamdental moral principles and devalues the child as a human being.

While, in a discussion of utilitarianism, Allen Tate says (in “The Greater Good”):

The benefits of vaccination must verifiably outweigh great costs and suffering. Whether the benefits truly yield a tremendous good is simply unknown.

This pitting of two opposing requirements as prerequisites of a vaccine schedule —- the need for more research and the unethical practice of conducting this research —- illustrates the ultimately cynical heart of the anti-vaccine movement.

Personal Examples (or, The Dangers of Induction from Lousy Sample Sizes, or The Anecdotal Fallacy)

Supporting an argument by providing compelling human stories is a way to appeal to a person’s sense of the personal and immediate. Take Michael Belkin’s story above. Or Lisa Marks Smith’s chapter, “Get Your Affairs in Order,” in which she makes the case that receiving a flu vaccine at a local big-box pharmacy caused her to contract Guillain Barre. Even if you grant causation in both of these cases, you have to consider the other side of the coin: deaths due to the illness the vaccine ostensibly prevents. Consider Guillian Barre: 3,000 to 6,000 reported cases per year in the United States, irrespective of vaccine status (I know, Refusers: suspect source), with low mortality. Flu? Around 40,000 deaths per year.

I had a Facebook friend (who un-friended me due to my pointing out that correlation does not imply causation when she claimed that her chiropractor husband cured her daughter’s fever by cracking her back) who blithely asserted that she had never had a flu shot, and had never had the flu. Impressive, I suppose, and bully for her; but a sample size of one is not an argument for or against anything, including vaccination. Anecdotes can be piled up on both sides of the argument until they become meaningless. In The Panic Virus, Seth Mnookin describes the harrowing affair of Kelly Lacek and her son, who contracted Haemophilus influenzae type b – after skipping the vaccine schedule at the urging of her chiropractor. The boy nearly died, and the only person who was able to diagnose the condition was an aging doctor who had seen the disease in decades past, before there was a vaccine. There’s also Dana McCaffery, whose daughter contracted pertussis (whooping cough) as an infant, before she was even eligible for the vaccine. More stories abound, and they’re effective in Vaccine Epidemic…if that’s the only kind of book you read. And I suspect vaccine refusers only read these kinds of books.

It’s My Choice

If there’s an example of the lack of community mindedness that pundits lament pervading secular America, it’s the notion of “privilege” or “choice” observable in the vaccine choice movement. Consider the flu vaccine: a parent may wish to forgo the vaccine for their child due to suspicions about mercury in the suspension (even though non-thimerosol preparations are available)¹, and rightfully conclude that even if their otherwise healthy child were to contract influenza, the likelihood of death due to the flu is small. But it’s not your child specifically that vaccine schedules are designed to protect, at least not exclusively. By participating, your child is reducing the prevalence of influenza in the community, and to those areas to which she might travel. By participating, your child is helping more vulnerable populations (those with compromised immune systems and the elderly) avoid contraction.

Another example: Rubella. It is true that in most people, Rubella or (German measles) is not an especially frightening disease. So if you’ve already borne healthy children, you may take comfort in the fact that they are not likely to experience severe illness or death from Rubella (not least of all because those of us who are more convention and community minded about this kind of thing have innoculated our children). The impact of Rubella, however, on newborn children who contract it from their mothers is devastating. And in a community with an outbreak of Rubella, children in the first three months of life are at severe risk. Rubella in your fourth grader? Just a rash and a fever, maybe. In your newborn? Maybe heart defects and nervous system damage. Maybe death.

Jumping the Shark

Vaccine Epidemic revealed to me the surprising notion that Dr. Andrew Wakefield, and the vaccine-autism chestnut, is alive and well among the anti-vaccine crowd. If you were to only read Vaccine Epidemic you would think that Wakefield simply lost his medical license for supporting vaccination choice (specifically, that the MMR vaccine should be administered separately in three distinct doses). The truth, of course, is far more damning:

• Wakefield’s conclusions were based on a very small sample;
• Wakefield’s conclusion — a link between MMR vaccine and autism — could not be replicated by his peers, a standard in any kind of research;
• Evidence emerged that, two years prior to Wakefield’s findings being published in The Lancet, Wakefield had been hired by a lawyer to investigate a link between vaccines and autism;
• Wakefield performed invasive medical tests on children that were not approved by the Royal Free Hospital’s ethics committee;
• Wakefield was developing his own vaccine in preparation for the MMR vaccine’s discrediting due to his published results.

Huckster Bob Haley

Wakefield was, of course, the medical celebrity in the anti-vaccine movement. I had never heard of Bob Haley before I picked up Vaccine Epidemic, but he’s something of a star himself. About Haley:

• He is a proponent of chelation therapy
• He attempted to market OSR#1, an unregulated industrial chemical called n,N’-bis(2-mercaptoethyl)isophthalamide, for the treatment of autism, and attempted to sidestep FDA approval of the substance by marketing it as a dietary supplement.

The most curious thing about Haley’s inclusion in the book (if the reader takes the time to research Haley and his company, CTI Science) is that the parents of children with autism, desperate for a cure, lauded and goaded the usage of OSR#1 irrespective of FDA approval. For a group of people who are suspicious of substances being introduced into their children’s bodies by vaccines, they are curiously eager to offer their children up for experimentation, or to attempt all kinds of “natural” or “homeopathic” cures into them, without anything close to the oversight and study exacted on vaccines.

And another huckster: Dr. Sears.

National Vaccine Injury Compensation Program and VAERS

A favorite whipping boy of the anti-vaccine movement that is brought up in Vaccine Epidemic is the VICP (the National Vaccine Injury Compensation Program). Both the VICP and VAERS are invoked as a means of proof that vaccines are harmful. VAERS is popular because it is democratic: you and I and anyone else can go in and look at the numbers. You can sort the data as you like, but access is not expertise.

Consider this article from Natural News, which references a study that purports to show how VICP payouts to parents proves the autism/vaccine link. Linking to a >press release, Neev M. Arnell summarizes:

The study looked at 1300 cases of children with brain injury resulting from vaccines where the court’s records referenced autism, symptoms of autism or disorders commonly associated with autism — twenty-one cases outright stated “autism or autism-like symptoms” in the court records. The researchers then identified and contacted 150 of the families that were compensated to find out whether the children had autism. 62 of the families they contacted (greater than 40 percent of their sample) reported children with autism, for a total of 83 cases of autism.

The study is somewhat (in)famous, depending upon if you get your news from Natural News or, say, Wired.

There are a few problems with the conclusions of the “study,” not the least of which is its provenance: lawyers and their clients.

How the Pace Legal Group operationalized “autism” is novel, to say the least:

One must note that the DSM-IV definition of “autistic disorder” is similar on its face to the VICP’s definitions of “encephalopathy, seizures, and sequela.” … The DSM-IV “autistic disorder” does not contradict the VICP description of encephalopathy, seizures, and sequela.

There are diagnostic criteria for Pervasive Developmental Disorder. Some symptoms that occur in autism may be observed in children or adults with other disorders. How do you determine whether someone is autistic or not? Differential diagnoses. Do you know whose job that is? Not a law student’s. In fact, as Paul Offit has pointed out, it is not physicians but lawyers who often make VAERS reports connecting a vaccine to autism.

So the study did not differentiate between bona fide autism and autistic-like symptoms. And fewer than 10 of the 83 cases provided “third party medical, educational, or court records confirming autistic disorder on file with the authors.”

There is also the method that bears scrutiny. The Pace group assisted the parents in combing the database to find the 60-odd cases that either explicitly or indirectly reference autism (and that is a big indirectly). They were then contacted by telephone, and a small number (22 parents) were asked to complete a screening tool, “The Social Communication Questionnaire.” (Screeners, in psychometrics, are brief instruments usually not sufficient to establish anything beyond the need for additional testing). The authors continue to refer to “vaccine-induced encephelopathy,” conflating the symptoms of this purported reaction with a bona fide autism diagnosis.

First, and most obviously, 83 cases out of 1300 is about six percent, not 40; the study attempted to extrapolate a larger conclusion from a sample size of 150, which is pretty small in this realm of endeavor, and the reason for choosing 150 is unclear (it should be a random sample). They then contacted families and asked them if their children had autism in the absence of other data. They attempted to use questionnaires, and while the percentage of the injurees whose respondents rated their children in the significant range (beyond the cutoff score) was high, the number of completed surveys is very low. And this is from a small sample to begin with.

This is problematic because parents don’t diagnose autism, so a phone survey isn’t really thorough enough to determine rates of diagnoses, and a brief questionnaire, while better than a phone interview, is still insufficient. (Furthermore, the qualifications for administering the psychometric instrument were likely not met, based on who authored the study.) Of the 83 reports, “the families report that their children have autism and symptoms of autism.” I suspect that’s not additive (“I have a common cold and symptoms of the common cold”); rather, either someone diagnosed their child with autism, or the family reported that the child had symptoms of autism. What symptoms? How many of the families surveyed actually had a child diagnosed autistic? Half? Three? Or did the families answer some questions over the phone and the “researchers” determined whether they had some “symptoms” of autism?

It’s kind of terrifying to thing that people are making decisions to not vaccinate their children based on work like this, which gets linked to from suspect sources like Natural News. And, in effect, their decision could affect my children. If you bookmark Natural News and rely on it to provide you with information about whether or not to vaccinate your child, you’re going to be influenced by studies like the Pace group’s piece. And as you’ll see below, even larger organizations will report on such studies in a way that is misleading, because the headlines are likely to generate pageviews.

One final point: I can’t think of a complement in the homeopathic world that does what VAERS does.

The Press

As with politics, how the press (the “liberal media!”) reports these studies makes a difference in how people perceive the data. Consider my example above, where Beth Parker quoted David Nelson from the Department of Pediatrics at Georgetown University:

“The government has not compensated any case based on a determination that autism, in the absence of acute neurologic illness, was actually caused by vaccines. Furthermore, there is no reliable scientific evidence that vaccines cause autism even in cases where an acute encephalopathy following vaccination has occurred.”

And then she concludes:

For some families, it is not enough.

But the title of her article? “New Study Suggests Link Between Vaccines and Autism.” The headline, however, is contrary to the conclusion of the article.

And as Julia “GeekMom” Sherred observed regarding the Pace study I mentioned above:

The way in which SafeMinds.org has presented this study is very misleading. Not a single thing about this paper, or the involvement of Pace Law School, has been represented accurately. How many parents are going to take the time to read the 66-page paper, or are they just going to listen to the press and believe the presentation? How many parents understand solid experimental design?

In another example of headline-grabbing hyperbole, Alex Jones’ Prison Planet recently posted:

The truth has once again shaken the foundation of the ‘American Tower of Babel’ that is mainstream science, with a new study out of Harvard University showing that pasteurized milk product from factory farms is linked to causing hormone-dependent cancers.

The Harvard Gazette’s own write up of the “study” was less emphatic, speaking in the measured tones expected of scientists:

Long-term studies are needed to see if any of this is important for children’s health. “We don’t know what the larger implications are,” said Ganmaa [Davaasambuu, a researcher]. (The National Institutes of Health is now reviewing Ganmaa and her team’s application to fund a two-year study.)

Davaasambuu was actually discussing the state of research in the field, and ongoing investigations that she and some colleagues will be conducting. If you read the headline, though, from Prison Planet, you would think something conclusive had been discovered. Guess where I read it? Facebook. A friend posted the link to Prison Planet, but not to the Harvard article.

What To Do?

It seems that the stakes are high: proponents of vaccine choice not only risk the health of their children, but the health of the young, infirm, and elderly in their communities.

By way of Paul Krugman, Chris Mooney points out the “smart idiot” phenomenon, where people who have attained higher levels of education are more likely to ignore scientific evidence than less educated people. And indeed, that is where the pockets of vaccine choice are coming from. Krugman concludes:

What Chris Mooney is telling us is that this is a vain hope. Highly educated political conservatives — and this includes conservative economists — are going to be less persuadable by empirical evidence than the man or woman in the street. The more holes you poke in doctrines like expansionary austerity or supply-side economics, the more committed they will get to those doctrines.

This debate isn’t going to be won by rational argument.

Replace “conservatie economosists” with “vaccine choice advocates” and “expansionary austerity or supply-side economics” with “the autism-vaccine link.” It seems evident that, quite to the contrary of the call for “more research” and “dialog” by anti-vaxers, the debate will not be won by rational argument.

As Seth Mnookin quotes Leon Festinger in Panic Virus:

Suppose an individual believes something with his whole heart; suppose further that he has a commitment to this belief, that he has taken irrevocable actions because of it; finally, suppose that he is presented with evidence, unequivocal and undeniable evidence, that his belief is wrong; what will happen? The individual will frequently emerge, not only unshaken, but even more convinced of the truth of his beliefs than ever before. Indeed, he may show a new fervor about convincing and converting other people to his view.

Vaccine choice advocates don’t really want dialog or more studies. The movement is cynical at its heart.

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¹It’s also beating a dead horse. Thimerosol is no longer an ingredient in vaccines (with the exception of some influenza vaccines), yet the incidence of autism continues to rise. Paul Offit also points to a well-designed study that no significant neurological, psychological, or developmental differences were found for those who received greater or lesser quantities of mercury.