The Hannah Poling case and the rebranding of autism by antivaccinationists as a mitochondrial disorder
Regular readers of this blog may have noticed that I seem to have taken on the role of the primary vaccine blogger of this little group of bloggers trying desperately to hold the forces of pseudoscience and magical thinking at bay in the face of powerful forces trying to “integrate” prescientific belief systems with science- and evidence-based medicine, a process that would be unthinkable in just about any other field of applied science, such as aeronautics or the physics used in engineering, just as creationists try to “integrate” religion with biology. Although I do have a strong interest in the antivaccination movement in general and the claim that vaccines, or the mercury in the thimerosal preservatives that was in many childhood vaccines in the U.S. until late 2001 or early 2002 (when they were taken out) are a major cause or contributor to autism, such had not been my intention. When I started here on SBM, I had intended to be a lot more diverse. Indeed, I had even had another topic entirely in mind for this week’s post, but, as happens far too often, news events have overtaken me in the form of a story that was widely reported at the end of last week. It was all over the media on Thursday evening and Friday, showing up on CNN, Larry King Live, the New York Times, and NPR. It happens to be the story of a girl from Georgia named Hannah Poling whose case before the Vaccine Injury Compensation Program (VICP), which had originally part of a much larger proceeding known as the Autism Omnibus in which nearly 5,000 parents are petitioning the VICP for compensation based on the claim that their children’s autism were caused by vaccines, was settled by the government. This settlement was based on the observation that Poling had a rare genetic mitochondrial disease that may have been exacerbated by a series of vaccines that she had, after which, among many other problems, Hannah regressed and developed some autism-like symptoms and then months later a seizure disorder. Instantly, it was being trumpeted all over the Internet, blogosphere, and media that the government had “admitted” that vaccines cause autism. One particularly excitable antivaccinationist named Kent Heckenlively (whom we’ve met before), even went so far as to foreshadow the propaganda blitz that was to come as he wrote on the antivaccine blog Age of Autism a full week before this news blitz began:
It’s official. The sky has fallen. The fat lady has sung. Pigs are flying.
In a settlement, the settling party tries to admit as little as possible. It’s like what I imagine the settlement claim against Bill Clinton in the Paula Jones case must look like. Nowhere in the document does he admit to dropping his pants in a hotel room and asking her to kiss it. It likely says something along the lines of he concedes they were in a hotel room together, they were alone, and something happened which formed the basis of her law suit.
But we all know what happened there. And we know what this settlement means.
The government just dropped its pants.
One thing this shows us is just how the blogosphere can be bubbling with information that lets one predict a public relations blitz like this. The mainstream press seemed to have been totally blindsided by this story, but if reporters had only been checking the right blogs, they would have known about it a full week before, if not longer. In any case, since Thursday, there has been a very well orchestrated public relations campaign to frame this settlement as the government “admitting” that vaccines cause autism. It’s not, as I will try to explain, but framing it that ways has thus far been a very effective PR strategy for antivaccinationists. In my nearly three years of following this topic, I thought that I had never seen anything like it before.
But I had.
This case is nothing more than a demonstration that everything old is new again and that, no matter what the science says, it’s always all about the vaccines, the claims of antivaccinationists otherwise notwithstanding, as I will now show. What we are seeing now, as we did a few years ago, is the rebranding of autism as a condition in order to serve the purposes of the antivaccination movement.
Please indulge me for a moment as I step back to provide a bit of background. I first became interested in the antivaccination movement in 2005. Before that time, in my meanderings on the Usenet newsgroup misc.health.alternative, I had seen some posts claiming that vaccines caused autism (not to mention just about every other chronic condition or malady under the sun). However, I hadn’t paid much attention to it. In the spring of 2005, a journalist named David Kirby wrote a book called: Evidence of Harm: Mercury in Autism and the Autism Epidemic: A Medical Controversy. In this book, he reported on a small but vocal group of parents and “scientists” who claimed that a preservative in vaccines called thimerosal (ethyl mercury) was the cause of the huge increase in autism diagnoses since the early 1990s, a phenomenon that these autism activists like to refer to as an “epidemic” (or, more crassly, a “tsunami” or even a “holocaust“). In reality, the true reason for the huge increase in autism prevalence over the last 15 to 20 years is because of the broadening of the diagnostic criteria for a diagnosis of autism or autism spectrum disorder (ASD) beginning in the early 1990s resulting in widespread diagnostic substitution.
The second shock that got me interested in this issue came in June 2005, with the publication of an article called Deadly Immunity simultaneously on both Salon.com and Rolling Stone. The article was a a pièce de résistance of confusing correlation with causation, cherry picking sources and quote-mining from sources to misrepresent them, and conspiracy-mongering to tell a false story of the Centers for Disease Control attempting to cover up the “fact” that mercury in vaccines causes autism. Meanwhile, antivaccination group Generation Rescue was stating explicitly that “childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning.” (You will note that I used Archive.org to pull up an old version of the GR webpage; it no longer says that. More on why later.) Meanwhile, antivaccinationist sympathizer Don Imus was inviting David Kirby and Robert F. Kennedy, Jr. on his show to spread their message across the airwaves. At one point, as I recall, Don Imus wanted to host a “debate” between Kennedy or Kirby and a defender of vaccines. I don’t recall if it ever happened, because I don’t listen to Imus, but a more hostile environment for a scientist defending vaccines would be hard to imagine.
Fast forward two years to spring 2007. In the intervening time, science had not been kind to the claim that the mercury in thimerosal in vaccines causes or contributed to autism. Indeed, I’ve discussed in detail the reasons why science has come to reject the hypothesis that mercury in vaccines (or, for that matter vaccines) cause or contribute to autism, referring to it as a failed hypothesis. However, in spite of that, a large legal action known as the Autism Omnibus, in which just under 5,000 parents are seeking compensation under the VCIP for their autistic children based on the claim that vaccines were a cause or major contributor to their children’s autism was moving forward. One thing that has to be understood about the VCIP is that it was created in response to fears that vaccine manufacturers would abandon the vaccine business due to liability concerns (a legitimate fear) and that it designed to compensate any injury that could be attributed to vaccines, with a standard of evidence that is a legal, not a scientific standard that’s been likened to “50% and a feather.” These two points are both very important to remember when you hear vaccine opponents trumpeting the Poling case as “proof” of vaccines causing autism. Another thing that’s very important to remember is that the Autism Omnibus is not a court proceeding in the usually understood sense of the term. The adjudicators are called Special Masters and are judges trained in vaccine issues, and the parents can still sue if the ruling goes against them. Moreover, given the volume of cases, the Special Masters decided to hear a small number of “test cases” to test the claim upon which the claims for compensation are based: that some combination of mercury and vaccines triggered autism in these children. In essence, the plaintiffs were asked to choose their most convincing cases and present them. The rulings on these test cases will, as I understand it, then determine if the remaining parents are entitled to continue and will provide precedents upon which to rule on future cases. Thus far, the test cases have not been going well, with plaintiffs’ attorneys generally preferring to tug on the heart strings and present dubious “authorities” to testify on their behalf, while government witnesses demolished nearly every plaintiff scientific claim. This may not matter, however, as the Daubert standard, which for regular court cases sets fairly strong standards on the allowability of expert testimony and the qualification of experts who testify, does not apply for the Omnibus.
Finally, it’s important to understand that apparently Hannah Poling was to be one of these test cases.
Why Poling was removed from the case and settled separately is not known. However, nearly a full week before the media “tsunami” regarding the government concession hit (sorry, I couldn’t resist; I suspect that Mark Crislip is starting to have an effect on me), David Kirby wrote about the “concession” on that repository of antivaccinationism, The Huffington Post, in which he gloated about the ruling and asked “nine questions,” while the Age of Autism published the entire text of the concession and David Kirby did the same on The Huffington Post. Where Kirby got the text of the ruling he isn’t saying precisely (and, make no mistake, it was almost certainly Kirby who got his hands on it), but it’s not clear that it was entirely legal for whoever gave it to him to do so or for him to publicize what should have been a sealed court document about the case of a minor. Be that as it may and since the parents (one of whom was a neurology resident at the time of Hannah’s deterioriation) are now showing up on Larry King Live and all sorts of other media outlets, the cat’s out of the bag and there’s no reason for me not to excerpt relevant parts of the ruling to explain what happened:
At seven months of age, CHILD was diagnosed with bilateral otitis media. Pet. Ex. 31 at 20. In the subsequent months between July 1999 and January 2000, she had frequent bouts of otitis media, which doctors treated with multiple antibiotics. Pet. Ex. 2 at 4. On December 3,1999, CHILD was seen by Karl Diehn, M.D., at Ear, Nose, and Throat Associates of the Greater Baltimore Medical Center (“ENT Associates”). Pet. Ex. 31 at 44. Dr. Diehn recommend that CHILD receive PE tubes for her “recurrent otitis media and serious otitis.” Id. CHILD received PE tubes in January 2000. Pet. Ex. 24 at 7. Due to CHILD’s otitis media, her mother did not allow CHILD to receive the standard 12 and 15 month childhood immunizations. Pet. Ex. 2 at 4.
According to the medical records, CHILD consistently met her developmental milestones during the first eighteen months of her life. The record of an October 5, 1999 visit to the Pediatric Center notes that CHILD was mimicking sounds, crawling, and sitting. Pet. Ex. 31 at 9. The record of her 12-month pediatric examination notes that she was using the words “Mom” and “Dad,” pulling herself up, and cruising. Id. at 10.
At a July 19, 2000 pediatric visit, the pediatrician observed that CHILD “spoke well” and was “alert and active.” Pet. Ex. 31 at 11. CHILD’s mother reported that CHILD had regular bowel movements and slept through the night. Id. At the July 19, 2000 examination, CHILD received five vaccinations – DTaP, Hib, MMR, Varivax, and IPV. Id. at 2, 11.
According to her mother’s affidavit, CHILD developed a fever of 102.3 degrees two days after her immunizations and was lethargic, irritable, and cried for long periods of time. Pet. Ex. 2 at 6. She exhibited intermittent, high-pitched screaming and a decreased response to stimuli. Id. MOM spoke with the pediatrician, who told her that CHILD was having a normal reaction to her immunizations. Id. According to CHILD’s mother, this behavior continued over the next ten days, and CHILD also began to arch her back when she cried. Id.
On July 31, 2000, CHILD presented to the Pediatric Center with a 101-102 degree temperature, a diminished appetite, and small red dots on her chest. Pet. Ex. 31 at 28. The nurse practitioner recorded that CHILD was extremely irritable and inconsolable. Id. She was diagnosed with a post-varicella vaccination rash. Id. at 29.
Two months later, on September 26, 2000, CHILD returned to the Pediatric Center with a temperature of 102 degrees, diarrhea, nasal discharge, a reduced appetite, and pulling at her left ear. Id. at 29. Two days later, on September 28, 2000, CHILD was again seen at the Pediatric Center because her diarrhea continued, she was congested, and her mother reported that CHILD was crying during urination. Id. at 32. On November 1, 2000, CHILD received bilateral PE tubes. Id. at 38. On November 13, 2000, a physician at ENT Associates noted that CHILD was “obviously hearing better” and her audiogram was normal. Id. at 38. On November 27, 2000, CHILD was seen at the Pediatric Center with complaints of diarrhea, vomiting, diminished energy, fever, and a rash on her cheek. Id. at 33. At a follow-up visit, on December 14, 2000, the doctor noted that CHILD had a possible speech delay. Id.
To make a long story short, “CHILD” (whom we now know to have been Hannah, thanks to the PR blitz) regressed and continued to have ear infections. She was seen by Dr. Andrew Zimmerman, a pediatric neurologist, who diagnosed her as having: “encephalopathy [that] progressed to persistent loss of previously acquired language, eye contact, and relatedness” or “regressive encephalopathy with features consistent with an autistic spectrum disorder, following normal development.” He also noticed features consistent with a mitochondrial disease and had Hannah undergo a neurogenetics evaluation. Ultimately, she was diagnosed with a disorder of her mitochondria due to a point mutation in the gene for the 16S ribosomal RNA (T2387C). The conclusion was:
Medical personnel at the Division of Vaccine Injury Compensation, Department of Health and Human Services (DVIC) have reviewed the facts of this case, as presented by the petition, medical records, and affidavits. After a thorough review, DVIC has concluded that compensation is appropriate in this case.
In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations CHILD received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder. Therefore, respondent recommends that compensation be awarded to petitioners in accordance with 42 U.S.C. § 300aa-11(c)(1)(C)(ii).
So what does this mean? First, one thing that it doesn’t mean, contrary to all the P.R. over the last few days, is that the government has conceded that vaccines cause autism. It hasn’t, and science doesn’t support that contention even if it did. Mitochondrial disorders of the sort suffered by Hannah are genetic in nature and rare, an estimated 5.7 individuals per 100,000 worldwide, and, as described well in this New Scientist article, the subset of these disorders that cause autism-like symptoms is even more rare. It is also known that children with mitochondrial disorders are prone to encephalopathy in response to stress or fever that can cause them to regress. The source of this stress can often be an infection, such as a cold or normal childhood illness, that results in a fever. The reason is that the mitochondria are the “batteries” or energy sources of the cell, and mitochondrial diseases can lead a child to be “energy challenged,” so to speak. Because neurons have such a high constant resting energy requirement, stressors like fever deplete the neurons of energy. Moroever, mutations in the same gene that Hannah had a mutation in are incredibly rare. According to Salvatore DiMauro, an researcher who studies mitochondrial diseases, only four other cases are known. It is also important to see what is really meant about this diagnosis. Kevin Leitch, a prominent autism blogger, compared the actual DSM-IV diagnostic criteria for ASDs with what is known about Hannah and found that only three of the behaviors described in the ruling appeared to match up with criteria for ASDs (poor eye contact, poor relatedness, and fixating on fluorescent lights during the examination). Of course, it’s entirely possible that there were other aspects of this diagnosis that have yet to be reported, but, even so, what was really diagnosed was a regressive encephalopathy that had some features of ASD. It may have been exacerbated by the fever that occurred in the wake of the series of vaccines described; it may have been exacerbated by the girl’s recurrent bouts of otitis media. Either way, the government decided that the temporal course of vaccination and regression was close enough that under the law “compensation is justified.”
Another aspect of this question is that it has indeed been noted that mitochondrial diseases may be more prevalent in children with autism or ASDs (the highest estimate of which is here), but it is not at all clear if mitochondrial diseases have anything to do with the “run-of-the-mill” (if you’ll excuse the term) variety of autism and ASD that is commonly diagnosed or whether the apparently higher level of mitochondrial disease noted in some studies of children with ASD is an epiphenomenon. As our fearless leader here at Science-Based Medicine said in an interview in the New Scientist:
“It’s not surprising that mitochondrial function is abnormal,” says Steven Novella, a neurologist at Yale University. “With neurodegenerative disorders almost any marker of cell health will be worse than in controls.” Without more research, he adds, it is impossible to say whether the mitochondrial problems are the cause of the disease or its by-product…Those who argue otherwise, are “making multiple assumptions that are not established”, Novella warns.
In fact, mitochondrial disorders are not benign diseases. Children who have them almost invariably also have other serious (and characteristic) health problems due to their mitochondrial dysfunction. Moreover, the question of vaccinating versus not vaccinating is quite clear-cut–but not in the direction Kirby and other antivaccinationists would have you believe. A person whose friend has a child with mitochondrial disease showed up at the Autism Vox blog and said:
FYI…vaccines ARE recommended for children with mito!!!! Some are advised to avoid a shot, ONLY if a history of bad reactions exists (which holds true for the general population). My friends whose children have mito ALL vaccinate their children and are mortified by people who opt to not give shots to their kids because of quack science (vaccines=autism). Those un-vaccinated children put my child and my friend’s children at risk for contracting serious diseases. Diseases that most certainly would land a child with mito in the ICU & possibly kill them.
Go here: http://www.umdf.org/site/c.dnJEKLNqFoG/b.3616911/apps/s/content.asp?ct=4211851 and read. I will also add, it is HIGHLY unlikely that a child with autism has mito, especially if that child has never been hospitalized, doesn’t have severe health issues, eats on their own, there is no muscle-wasting, vision impairment, heart defects, etc. Read more about mito at umdf.org & see how autism doesn’t equal mito, and how this case has nada to do with what Kirby is fighting for!
Kevin Leitch’s guest blogger SL has rounded up more information on the severity of mitochondrial disorders and the need to vaccinate children who have them.
The bottom line is that it is fever from any source, be it a vaccine reaction or, more commonly, an infection that can exacerbate mitochondrial disorders and provoke encephalopathy. Moreover, because of the confounding factor of multiple ear infections, it’s not 100% clear that Hannah’s vaccinations even caused her regression, although it is certainly possible. None of this, of course, has stopped antivaccinationists from taking this ball and running with it as far as they can as though it were some sort of bombshell admission from the government that it had been wrong all along.
I rather suspect that the reason is that even the most die-hard among them now realizes that the previous tactic of blaming mercury for autism is increasingly a losing proposition, given the science and the number of studies now that have failed to find a link. Consequently, as a buildup to the Poling press conference on Thursday, the antivaccine blogs, particularly the Age of Autism, were in full gloat mode, with Kent Heckenlively writing more posts like the one at the beginning of this article, David Kirby showing up on the Don Imus show making statements about how the government wouldn’t “allow the parents to speak” (actually, the only ones who aren’t allowed to speak are the doctors who examined and diagnosed Hannah) and being coy about where he got the settlement papers and CNN, Deidre Imus doing her usual antivaccination act on her husband’s show, and comedienne and former Playboy Playmate Jenny McCarthy (now turned antivaccinationist) writing articles and trying to organize protests demanding that the head of the CDC resign (this, apparently, to follow up her previous call for a demonstration in June at the headquarters of the CDC in Atlanta). Indeed, I distinctly remember hearing a long story on this case on NPR on the ride into work on Friday, walking through the clinic area on the way to the elevators and seeing it on CNN, and topping it off by hearing about it on the news on Friday night. It was truly surreal, and, for someone dedicated to science-based medicine, a threat to my blood pressure. Worse, this settlement is not even a real “bombshell” admission. As Arthur Allen, author of Vaccine: The Controversial Story of Medicine’s Greatest Lifesaver (an excellent book that I highly recommend, by the way), points out in an article for The Washington Independent, the Poling case is by no means the first case in which the VCICP paid out compensation for “autism-like” symptoms after vaccination:
I have since learned that the 934 families paid out more than $800 million since 1990 by the vaccine court included several with injuries that resulted in “autism-like symptoms.” At least a few of these cases involved tuberous sclerosis complex, a rare genetic condition in which tumors pop up in the brain and other organs, sometimes causing severe mental disability. Like mitochondrial disease, tuberous sclerosis can occur in the form of a regression in a normal-seeming child—and has been known to follow a shot. A senior court official tells me that a handful of TSC kids awarded by the court were, for all intents and purposes, autistic—though no one called it autism.
This media circus about the Poling case appears to be little more than a carefully orchestrated PR campaign by antivaccination groups funded by people with deep pockets, like Generation Rescue founder J. B. Handley, a wealthy investment banker, and now apparently the newest recruit to the cause, Jenny McCarthy. Moreover, it is very likely that the reason the Poling case was dropped as a test case from the Autism Omnibus is because it is so unusual and atypical. If it weren’t, don’t you think that the plaintiffs’ lawyers would have been chomping at the bit to have it included as a test case that would give them the “in” they need to gain compensation for nearly 5,000 parents?
All of this brings me back to my original point. What we are witnessing here is something that we witnessed before in 2005: the “rebranding” of autism. Oddly, Kim Stagliano, the editor of the Age of Autism blog, showed me this in no uncertain terms in a post she published on the day of the Poling press conference:
Is Miss Hannah Poling patient #1 in the new paradigm for “The disorder formerly known as autism?” Perhaps we’lll come up with a really funky sign like Prince did? Was Hannah misdiagnosed with autism, when she actually had a mitochondrial disorder that was triggered by her childhood vaccines? If so, there may be tens of thousands of children who have been misdiagnosed. That opens up rather a large can of wigglers, doesn’t it?
It might if it were true (for one thing, mitochondrial disorders are genetic disorders, many with maternal inheritance because they are due to mutations in mitochondrial DNA; they are not “triggered” by vaccines), but what really struck me about Stagliano’s observation is that we have indeed seen this all before. Remember how at the beginning of the article, I pointed out that the antivaccination group Generation Rescue used to say that autism is a “misdiagnosis” for mercury poisoning? It no longer says that now. Indeed, if you look at the Generation Rescue site now, what you will see is this:
We believe these neurological disorders (“NDs”) are environmental illnesses caused by an overload of heavy metals, live viruses, and bacteria. Proper treatment of our children, known as “biomedical intervention”, is leading to recovery for thousands.
Autism isn’t a “misdiagnosis for mercury poisoning” anymore, it would appear. It’s been rebranded again. First, we see the zealots back away from the claim that “it’s the mercury, stupid” when scientific evidence failing to find a link between mercury in vaccines becomes overwhelming. Instead, we now see an attempt to link all sorts of “toxins” to vaccines. Now, with the revelation that the government settled a case where vaccines may have exacerbated an underlying mitochondrial disorder and led to an encephalopathy with some features of regressive autism, antivaccinationists now think they have a new “brand” for autism. No longer is it a “misdiagnosis for mercury poisoning.” Now it’s a “misdiagnosis for mitochondrial disorders.” However, as has been explained on Steve Novella‘s blog and elsewhere, the government settlement in this case says nothing about any but possibly a very, very few children, and even about them it does not say that vaccines do more harm than good. Moreover, the claim isn’t even a winner as far as obtaining compensation, given how unusual Hannah’s condition is. Indeed, this “rebranding” of autism as a “mitochondrial disorder” drives home that the idea that vaccines cause autism is the incredible shrinking hypothesis. It’s gone from concrete claims three years ago that mercury or vaccines cause nearly all cases of autism to a lot of speculation based on one highly atypical case, a far cry from previous incriminations against vaccines as the cause of an “autism tsunami.” We shouldn’t forget that. It’s gone from a claim of causation due to vaccines for nearly all autistic children to tortured interpretations of a single case of a rare mitochondrial disorder. Even if mitochondrial disorders are not an epiphenomenon in autism but rather a cause of some forms of ASD, it is unlikely that they would account for more than a very small number of cases every year, too few to contribute much to the overall total. Like mercury, mitochondrial disorders are not The One True Cause of autism. We shouldn’t forget that, either. The goalposts have been moved, and they continue to move, because it is all about the vaccines.
The take-home lesson from this attempt to rebrand autism as a mitochondrial disorder is that everything old is new again. A few years ago, antivaccinationists in the U.S. tried to rebrand it as “mercury poisoning” due to vaccines while ignoring the far larger sources of mercury in the environment when considered cumulatively, such as the diet. When that rebranding withered in the face of science failing to find a link between vaccines and autism, they pivoted on a dime and without missing a beat are now trying to rebrand it as a mitochondrial disorder. What’s forgotten in all of this is that the commonality is, as it always is for antivaccinationists, vaccines. No matter what new causation hypotheses for autism they come up with, no matter what new discoveries in genetics and physiology are made about the pathophysiology of autism, there’s one thing you can predict: Antivaccinationists will try to torture the science into making it all about vaccines, just as they have always done, and that there will be a new round of autism quackery based on mitochondrial disorders.