I recently finished The Autism War, by Louis Conte, a fast-paced thriller in the style of John Grisham or Dan Brown, featuring international intrigue, corporate corruption and some seriously bad guys. Much as I enjoyed the book on those merits – the pacing is good, the plotting is terrific, and most of the characters are pretty interesting – the thing that really intrigued me about it was the fact that a lot of the material was based on real events.
How can I describe the feeling I had while reading The Autism War? I like mysteries and political thrillers, among them a series by Daniel Silva about an Israeli art restorer named Gabriel Allon. If – hypothetically speaking – I knew Daniel Silva were an art dealer from Israel (he’s not) who had recently visited the Vatican and met the Pope, and then I read his book about an Israeli art restorer who also happens to be a Mossad agent who goes to the Vatican and foils an assassination attempt on the Pope . . . it might be a similar feeling.
The Autism War centers on a police officer from the Hudson Valley in New York, who gets caught up investigating cases that have been settled by the National Vaccine Injury Compensation Program (“NVICP,” also known as “Vaccine Court”). Conte, himself, is a probation officer and independent investigator from the Hudson Valley, who – you guessed it – got caught up investigating cases settled by the NVICP. Like Tony Coletti, The Autism War’s main character, he is the co-author of a published paper written with a team of lawyers about that investigation. The real-life paper is called Unanswered Questions from the Vaccine Injury Compensation Program: A Review of Compensated Cases of Vaccine-Induced Brain Injury and was published in the Pace Environmental Law Review, February 2011.
I knew about the paper (though I confess I hadn’t actually read it until after The Autism War – the full text is 66 pages). I knew about the results: Despite the fact that we hear a constant refrain of “vaccines don’t cause autism” from the federal government, they found 83 cases of autism among the settled cases for vaccine-induced brain injury. I know the lead author, Mary Holland. And, while I didn’t really know Lou, I’ve known of him for years. So . . . you wouldn’t think the book would be particularly eye-opening, would you? Me neither. I was wrong. So, so wrong.
As I read, I found myself fascinated by Conte’s rendering of many different incidents that I recognized from news accounts and about which I considered myself well-informed: the Omnibus Autism Proceeding, including the Michelle Cedillo test case, the Hannah Poling decision, the public relations machine that swings into action whenever anyone threatens to utter the words “autism” and “vaccines” in the same breath, the British journalist who seems to have made a particularly sleazy career out of maligning a by-now-notorious British gastroenterologist, the Scandinavian researcher wanted for fraud who also happens to be an important contributor to many of the CDC-sponsored studies “proving” that vaccines don’t cause autism, the former director of the CDC that now heads the vaccine division of a major pharmaceutical corporation. All of these and more are brought to very colorful life in The Autism War in a way that I could not have anticipated. The more I read, the more I wanted to know exactly where the line fell between “real life” and Lou’s imagination.
Being a nosy blogger who writes about this sort of thing in the first place, I fired off an email to Mr. Conte. He indulged me with a two-hour phone conversation about all the events around the writing of the book. I think surprisingly to him, I didn’t ask why he wrote the book. As another person who got kind of accidentally and deeply involved in Autismland, who also feels the need to write about it, I “get” the compulsion to figure out how the pieces fit together and how, after interviewing family after family who “won” in Vaccine Court (“survived” seems to be a much more fitting word), he felt the need to write about it in a more personal and visceral way. I also understand the desire to add those “scenes we’d like to see” – the ones that unfortunately I knew didn’t happen, at least not yet – where the corruption finally hits the fan, spewing ugly little bits of corporate greed all over the key players.
I wanted to know more about the man behind the story: the one who seemed to not just know all the facts, but to have lived them. Conte is the father of 14-year-old triplet boys, two of whom have autism. Those boys were born back when the routine childhood vaccines packed the maximum mercury punch, and, as triplets are generally born smaller and earlier than singletons, any vaccines they got would have had an even greater impact. As a probation officer and independent investigator, Conte’s previous “claim to fame” involved an in-depth investigation into the prosecution of sex offense cases. He discovered that sex offense victims in his area were interviewed by law enforcement and court personnel an average of 11 times prior to a conviction. Clearly, such interviews would induce secondary trauma in the victims, many of them children, that was probably unnecessary to obtain convictions. Conte’s work lead directly to the establishment of a separate sex offense court, with special procedures to minimize the secondary trauma of victims of sex crimes.
Clearly, Conte was no stranger to court proceedings, or even specialized court proceedings. His prior experience did not prepare him for Vaccine Court, however, where the proceedings don’t follow the rules of any true judicial process. In fact, they more closely resemble the kinds of “trials” that take place in totalitarian countries or rogue backwaters, where a single person embodies “the law.” Rebecca Estepp, formerly of the Elizabeth Birt Center for Autism Law and Advocacy, says it well: “The deck is stacked against families in vaccine court. Government attorneys defend a government program, using government-funded science, before government judges.” Hearings are held in locations close to the petitioner, which may be convenient, but also has the effect of isolating the petitioners, making them feel that they are totally alone in their situation, which is the way federal officials like it, apparently, as petitioners who “win” are frequently told that they are lucky and should keep quiet about their good fortune.
The NVICP was established by a 1986 law called the National Childhood Vaccine Injury Act. The program was to provide swift compensation for people who had been injured while doing “their duty” of being vaccinated for common and dangerous illnesses, thereby serving “the greater good.” Vaccine Court is financed by a $0.75 tax on each and every vaccine dispensed in the United States. That means that you, the consumer and taxpayer, pay the damages to victims of vaccine injury, not the vaccine manufacturers themselves. The law seemed to allow people to sue manufacturers directly in civil court after going through the NVICP (which, as it turns out, is anything but a “swift” process) if they were unhappy with the decision, but a 2009 decision of the Supreme Court in the case of Brusewitz vs. Wyeth ended that perception. No vaccine manufacturer has paid a penny in the United States for any damage caused by their vaccines since the 1986 law was passed, essentially shielding vaccine manufacturers from any liability for harm caused by their products. Not surprisingly, that shielding has resulted in a wholesale abandonment of the previous, and some would say appropriate, caution with respect to the development and production of vaccines.
This is a comparison of the recommended childhood vaccine schedule for 1983 vs. 2014:
Back in the 1980s, you were not considered a candidate for vaccination if you were sick. Now, according to the American Academy of Pediatrics, it’s just dandy. You were not a candidate for a flu shot if you had any history of allergy to eggs or feathers. (I know, because I wasn’t “allowed” to have a flu shot then for that reason.) Now, unless you’ve had an anaphylactic, life-threatening reaction to eggs or feathers (and few people have), a flu shot is considered perfectly okay. In the ‘80s, almost no one thought it was a good idea to vaccinate the general population for chickenpox (varicella). The only real benefits for the average child and family would derive from fewer work hours lost by parents who would otherwise have had to stay home to care for their children with chickenpox. There was a very real concern that widespread varicella vaccination would potentially cause a sharp increase the number of shingles cases in the elderly, generally a more dangerous illness. Not only has that turned out to be true (giving rise to a shiny new shingles vaccine), many younger people (including yours truly) have come down with cases of shingles, some of them repeatedly.
Unanswered Questions, and by extension, The Autism War really began with a television interview back in May 2008 that Conte happened to catch. Sharyl Atkisson, an investigative correspondent for CBS news, was interviewing Dr. Bernardine Healy*, the former head of the National Institutes of Health, while the NVICP was deciding three test cases in the Omnibus Autism Proceeding, originally begun in 2002. During the course of the interview, Atkisson mentioned that the government had compensated more than 1,300 brain injury claims in vaccine court since the NVICP began in 1988, but was not studying or tracking those cases. So there was no way to know how many had resulted in autism. Conte couldn’t believe what he was hearing. Had there really been more than thirteen hundred cases of vaccine-induced brain injury that had been settled? Where did she get that number? He contacted Atkisson who told him that the CDC had given her the number when she asked. As a matter of fact, they had given her an exact number: 1,323.
A question burned in Conte’s mind, the same question Atkisson had asked the CDC: how many of those 1,323 cases had autism? He contacted his eventual co-author Bob Krakow, and the two of them filed a Freedom of Information Act Request asking for the NVICP files on these 1,323 cases. The response they received was that they could get redacted files, but it would cost $750,000 and take up to five years. Not having a spare three-quarters of a million dollars sitting around and not sure exactly what would get “redacted” from the files, they abandoned that idea. But they did begin looking for settled cases that mentioned signs of autism. It was slow and painstaking work until an anonymous caller (with a Washington, D.C. area code) told them to look for the settlements. They found 21 cases of compensated brain injury that also featured an autism diagnosis. Then they had the bright idea of tracking settlements by the Department of Justice attorneys. Unlike the petitioners’ attorneys, who kept dropping out of the program after a few cases (apparently, suing for compensation for vaccine injury is not a fabulous career choice), the DOJ attorneys tended to stay in the program far longer. They were able to find many more compensated cases of brain injury that way.
As an investigator, Conte was an old hand at locating people. If the petitioners’ names were the least bit unusual, he was able to track them down. Ultimately, they contacted nearly 200 families who had been compensated for vaccine-induced brain injury, and of that group there were 83 cases where the parents themselves reported an autism diagnosis. Not being a scientific paper, Unanswered Questions does not get into the numbers. There is no statistical analysis of what they found, just description. I understand their thinking, but I think that it lessens the impact of the information – at least it did for me. Out of the 1,323 cases of compensated brain injury, Conte and his team tracked down less than one-sixth of the total, and just over 40% of those were children with autism. When the report came out in 2011 and I heard they had found 83 compensated cases of autism, I thought that it indicated hypocrisy on the part of the NVICP, which maintains to this day that “vaccines don’t cause autism,” but the sheer magnitude of the hypocrisy didn’t hit me at the time. If the 40% held true for all 1,323 cases (and there’s no reason to think it wouldn’t – I have never heard of autism being harder on the unusual-name population), then the true number of already compensated cases of autism is more like 530! That’s 530 cases of brain injury “caused by” routine childhood vaccinations that “resulted in” autism.
One might think the autism in these cases is “just a coincidence,” but if that were so – if the presence of autism were not due to the vaccine-induced brain injury – then the prevalence of autism in the brain-injured population should be approximately the same as in the general population. Conte’s team found cases going all the way back to the beginning of the NVICP, which began hearing cases in 1988. One of the first cases Conte found was that of Danny Alger, only the tenth case heard by the newly created Vaccine Court. Back then, autism was a rare phenomenon, thought to occur in approximately one in 2,500 children, but by February 2009, when the first three test cases in the Omnibus Autism Proceeding were decided, the latest autism prevalence number was one in 110 twelve-year-olds. That’s an incidence rate of 0.9%, while the incidence of autism in the vaccine-induced brain injury population was more like 40%. Yeah, yeah, I know, “correlation does not equal causation,” but when something is twice as common in an exposed population than an unexposed population (a “relative risk” of two), that is generally considered evidence (if not “proof”) of causation in a court of law (see also:
Causation Determination in Workers’ Compensation and Toxic Tort Cases). It is “more likely than not” that the exposure caused the condition, which meets the legal definition of “preponderance of proof.” The prevalence of autism in the vaccine-induced brain injury population was a whopping 44 times that of the general population of twelve-year-olds (relative risk of 44). Maybe it’s just me, but I’m thinking that it’s “a hell of a lot more likely than not” that the vaccine-induced brain injury caused the autism.
But in February 2009, decisions on the first three test cases of the Omnibus Autism Proceeding were rendered. All three were denied. In Michelle Cedillo v. Secretary of Health and Human Services, Special Master George Hastings ruled that the Cedillos were not entitled to compensation as they had failed to demonstrate that Thimerosal-containing vaccines in combination with the MMR vaccine could cause autism. He even stated that “the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment,” essentially mocking the family for having the temerity to think that vaccines could cause autism, despite the fact that 530 cases of autism had already gone through the NVICP and been compensated. Is it possible that the special masters or the director of the NVICP, Geoffrey Evans, just didn’t notice the huge percentage of children with documented vaccine injury who just happened to have autism, even though he himself had co-authored a paper in 1998 with Vito Caserta, the current director of the NVICP, about how the MMR vaccine can cause encephalopathy, the very brain injury experienced by most of the compensated cases? The politest way I can think of to answer that? No fucking way. They knew – and they’ve known for a long time – that vaccines do cause autism.
Once you realize that, the rationale behind some other facts becomes a lot clearer. The case of Hannah Poling was originally part of the Omnibus Autism Proceeding, but was taken out of the proceeding in 2007 and quietly conceded in November of that year. When journalist David Kirby discovered in February 2008 that a case of autism had been recently compensated, outside the omnibus proceeding, the Department of Health and Human Services scrambled to justify that decision. You see, Hannah didn’t have “autism,” she had “features of autism spectrum disorder” (even though autism is a behavioral diagnosis based upon those very “features”) which was due to a “rare,” “underlying” mitochondrial disorder that made her particularly susceptible to vaccine injury. The nine vaccines Hannah received at her 18-month well-baby visit didn’t “cause” Hannah’s “features of autism spectrum disorder,” they merely “resulted in” them. But, until the moment that her case was pulled from the omnibus proceeding, Hannah Poling was grouped with the other nearly 5,000 cases of vaccine-induced autism, and her case was considered strong enough and typical enough that it was selected by the Petitioners’ Steering Committee as the first test case for what was known as “Theory 2” of the omnibus proceeding: that Thimerosal-containing vaccines caused her autism. In other words, the case was to serve as a sort of precedent for all the cases of autism wherein petitioners claimed that their children’s autism was brought on by Thimerosal-containing vaccines. But before the test cases for Theory 2 went forward, Hannah’s name quietly dropped off the list of potential cases and, as Kirby discovered three months later, was quietly conceded in November 2008 without a hearing.
Why did the NVICP pull Hannah’s case from the omnibus proceeding and concede it? Does it really make sense that this case was pulled because of a “rare” mitochondrial condition? Or is it more likely that Hannah’s case was so well documented by her father Dr. Jon Poling, a neurologist who trained at Johns Hopkins, and her mother Terry Poling, a registered nurse, that government attorneys knew they would lose it? If they lost it and it was still part of the omnibus proceeding, all the evidence given would be available for thousands of other cases, essentially establishing a precedent that Thimerosal-containing vaccines can and do cause autism.
Because Hannah’s case was conceded, no one had to testify, including doctors Andrew Zimmerman and Richard Kelley, both neurologists at the Kennedy Krieger Institute, where Hannah was treated. The interesting thing about that fact is that the special masters for the Theory 1 test cases relied on a previous statement from the same Dr. Zimmerman denying the plausibility of a mechanism by which vaccines could cause autism in order to deny compensation. The Department of Health and Human Services made an error in calculation, though: they conceded that vaccines caused Hannah’s autism, but not Hannah’s seizure disorder, because its onset was delayed. Before the test case decisions came out February 2009, the decision on Hannah’s seizure disorder was appealed, bolstered by a letter from Dr. Zimmerman dated November 30, 2007 detailing how both the autism and Hannah’s delayed-onset seizure disorder were in fact likely to have been caused by the vaccines Hannah received in July 2000. It had to be clear to officials at the NVICP that Dr. Zimmerman – whose prior statement was that there was no plausible mechanism by which vaccines could cause autism – had just provided a very plausible mechanism.
You see, contrary to the assertion of the NVICP, mitochondrial disorders are not “rare,” especially in the population with regressive autism. As Dr. Richard Kelley, Zimmerman’s colleague, details in Exhibit 2: “Our clinical experience at Kennedy Krieger Institute over the last 15 years has shown that a deficiency of mitochondrial Complex I is a common cause of regressive autism (emphasis mine).”According to a 2010 study in the Journal of the American Medical Association, “The majority of children with autism (6 of 10) had complex I activity below control range values,” and “Whether the mitochondrial dysfunction in children with autism is primary or secondary to an as-yet unknown event remains the subject of future work (emphases mine).” So there can be no assurance that those mitochondrial disorders probably present in a majority of children with autism are “inborn” or “underlying,” and might even be secondary to (meaning caused by) an “event” of vaccination. Can you guess what substance has been shown to cause mitochondrial damage? Uh, huh. Thimerosal.
Other than a few of the more “thrillerish” aspects of The Autism War, almost everything else is based either on fact or a pretty good likelihood. But one scene that has happened only in fiction is that of the director of the NVICP being called to testify before Congress. Unanswered Questions came out in 2011. Finally, last November 2013, the House Committee on Oversight and Government Reform scheduled a hearing to look into the question of malfeasance by the NVICP. Unfortunately, the government witnesses that were asked to testify expressed “ a great deal of reluctance” to appear (shocking, no?), because of the hearing’s “divisive” nature. Unfortunately, Committee Chairman Darrell Issa declined to compel them to appear with a Congressional subpoena, and the hearing was canceled. I’m hardly surprised that government witnesses balked at the idea of testifying before Congress, after all lying under oath is a crime, but I am highly disappointed at the fact that they have not been compelled to do so.
It is my fervent hope that so many people read The Autism War – and get as pissed off as I did – that there is such a public outcry that the federal government has no choice but to investigate the conduct of the National Vaccine Injury Compensation Program, rendering the conclusion of “the autism war” less a scene we’d like to see and more a scene we get to see.
If you’d like to help get the Congressional hearing underway, this lists the representatives who are on the committee, and this is an alphabetical listing where you can find their phone numbers. (Please use area code 202 when dialing.) If you click on a representative in this list, you can get his or her public email address.
*Dr. Bernardine Healy had this to say in April 2009: “Less than a year ago, the National Institutes of Health put out a call for expanded research on vaccine safety that contains many of the very things that parents are asking for: examination of the way the immune system handles different vaccines, the impact of nonvaccine components (like mercury and aluminum), and better understanding of susceptibility to vaccine side effects. The government laid out the need for markers that might predict vulnerable groups and proposed research on the comparative effect of different vaccine schedules and combinations of vaccines. This work is long overdue; shockingly, so is a study comparing groups of vaccinated and unvaccinated children.” That call for expanded research has yet to be fulfilled.
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