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Fees for the Omnibus Autism Proceeding hit $7M

20 Feb

In the United States, the court hearings on whether vaccines cause autism were held under the Omnibus Autism Proceedings (OAP). These proceedings represented over 5,000 families who filed for consideration that they had a child who (a) suffered a vaccine injury and (b) this injury resulted in autism.

The OAP heard six “test cases”. Each test case represented both the question of whether the specific test-case child considered suffered a vaccine injury and also the general question of whether the idea that vaccines cause autism was proven.

The first three test cases considered the question of whether the MMR vaccine could cause a vaccine injury resulting in autism. The second three test case considered the question of whether thimerosal containing vaccines could cause vaccine injury resulting in autism.

The decisions from the MMR cases have been handed down, and they were unanimously and definitively against the MMR causes autism theory. These have been appealed and that appeal was denied. I believe an appeal to the U.S. Supreme Court has been either filed or planned.

The decisions in the thimerosal cases have not been handed down yet.

The OAP was a very long process, starting in 2002 and still ongoing, involving multiple law firms and many lawyers and experts. It has been an expensive process. We are slowly learning just how expensive.

Last year an interim award of over $2M in legal fees was granted for lawyers working on the Cedillo test case. That was the first case heard in the MMR segment of the AOP.

The Court has now granted an interim award of $2,300,000 for the King test case, the first heard in the Thimerosal segment of the AOP.

During an unrecorded telephonic status conference on July 1, 2009, the law firm of Williams, Love, O’Leary, and Powers (WLOP) agreed to reduce its interim attorneys’ fees and costs request from $3,101,764.84 to $2,300,000.00, including $2,070,000 in fees and $230,000 in costs. Respondent’s counsel then indicated that respondent will not object to that amount. WLOP’s reductions included: the withdrawal of time and expenses relating to direct legislative lobbying, that is, any activity relating to efforts to affect the outcome of the political process; the withdrawal of time and expenses relating to “case specific” work in cases other than this claim, and unrelated to “general causation” work on the OAP; the withdrawal of time and expenses WLOP conceded were related exclusively to civil cases outside of the Vaccine Program; and the withdrawal of time and cost claims relating to public relations and media work during the pendency of the OAP. In addition, WLOP generally reduced the fees it requested for time spent on the OAP. Finally, WLOP agreed to significantly reduce the expenses for which it sought reimbursement, particularly those costs incurred while on travel.

Let me highlight a couple of statements:

the withdrawal of time and expenses WLOP conceded were related exclusively to civil cases outside of the Vaccine Program.

and

WLOP’s reductions included: the withdrawal of time and expenses relating to direct legislative lobbying, that is, any activity relating to efforts to affect the outcome of the political process

Bold is mine.

Apparently, the law firm applied for and was denied funding for work done for civil cases that were outside of the vaccine program and for lobbying efforts. What were they thinking trying to get tack that onto their fee request? Let’s face it, the Omnibus has already subsidized any upcoming civil cases by giving the lawyers time to research their arguments and pay experts. And, really, asking the program to pay for lobbying?

This is only an “interim” fee request. Fees are still mounting, and not all the past fees have been assessed:

Of note, this Decision resolves all fees and costs requested by the WLOP firm in the King interim fees application, at Tabs A & B of that application. This Decision does not resolve the amounts requested at Tabs C through U of that application.

I don’t know how much is involved with “Tabs C through U”, but it sounds like the remaining fees could be considerably more than the $2.3M granted.

It is interesting to note that the father/son team of David and Dr. Mark Geier have expert fee requests submitted (and as yet unpaid) for this case, even though they were not called as witnesses and, to my knowledge, did not submit expert reports:

This does not resolve the vast majority of fees and expenses relating to Drs. Geier and Young. The majority of expenses relating to Dr. Geier, David Geier, and Dr. Young are included in the PSC Committee Costs, at Tab C of the initial Fee Application

The Geier’s are well known “experts” in the vaccine court. Young, I suspect, is the same person as co-authored a paper with the Geiers purporting to show a link between neurodevelopmental disorders and thimerosal in vaccines. That paper was reported to have been recieved funding “…from the Autism Petitioners’ Steering Committee of the no-fault National Vaccine Injury Compensation Program (NVICP).”

I am all for petitioners in the Vaccine Court having access to good experts. I don’t consider the Geier team to meet that standard. Should the Petitioners’ Steering Committee have decided to fund this reasearch, I see that as their expense, not one that should be passed on to the vaccine program. Dr. Mark Geier has been referred to in court documents as:

There are multiple cases where Dr. Geier’s opinion and testimony have been given little or no weight because they exceeded the scope of his expertise.

and

Dr. Geier is “a professional witness in areas for which he has no training, expertise, and experience”

I frankly suspect that funding The team of Young, Geier and Geier in this instance is another attempt to get the Vaccine Program to pay for work the lawyers expect to use in the civil cases that will follow the likely rejection of the Vaccine Court hearings. Remember, they weren’t called as expert witnesses in the Omnibus.

One other expert witness of note, Dr. Vas Aposhian, is also mentioned in the fee ruling:

This decision resolves the $34,048.25 that WLOP requested for expenses related to Dr. Aposhian ($31,750.00 in fees; and $2,298.25 in expenses incurred in May 2008). This decision does not resolve the $207,382.53 in fees and expenses included in the PSC Committee Costs for costs relating to Dr. Aposhian, nor does it resolve the $7,910 requested by Williams Kherkher for costs associated with Dr. Aposhian. See Tab C at 3887 and Tab E at 4396-98.

We don’t have the decisions from the King hearing yet, but here are some comments from the Cedillo decision:

Thus, concerning this issue [genetic hypersensitivity to mercury], I conclude that the testimony of Drs. Brent and Cook was persuasive, and that the testimony of Dr. Aposhian was not.

I find that Dr. Brent’s testimony on this point [the lack of an established mercury efflux disorder] was persuasive, and that the testimony of Dr. Aposhian was not.

I wonder if Dr. Brent, whose expertise was persuasive, will be paid anything like the roughly quarter million dollars that Dr. Aposhian has billed.

So we have $2M in fees granted for the Cedillo hearings, and now $2.3M for the King hearings. This is part of a total of over $7,000,000 requested in interim fees:

In their application, the petitioners sought a total of $7,202,653 for interim fees and costs. This total reflected the fact that this case was, as explained above, one of the “test cases” in the OAP. Because this was a “test case,” in which the petitioners sought to present all of the “general causation” evidence concerning the theory that thimerosal-containing vaccines can cause autism, several different law firms participated in the development and presentation of the evidence, while five expert witnesses prepared expert reports and testified at length for petitioners during the evidentiary hearing. The high total sought reflects the participation of all those law firms and expert witnesses.

I don’t think anyone is surprised that this is a very expensive proceeding.

Millions of dollars were spent trying to prove the now discredited (and never well supported) hypothesis of Dr. Wakefield. The thimerosal hypothesis also never had much substance, and has cost millions more.

One thing good out of all this is that the proceeding also paid to compile expert reports from some real experts debunking the MMR and Thimerosal myths.

Autism Omnibus: Hazelhurst appeal denied

29 Jul

The Autism Omnibus Proceedings is, for better or worse, one of the big stories in the world of autism news. Hearings have been held, using the best science and arguments that could be brought to bear. The two theories were (1) does MMR cause autism and (2) does thimerosal cause autism.

Each theory was tested using three “test cases”. Essentially, three trials for each theory, each discussing an individual child plus arguments on “general causation”.

So far, the decisions are only in on the MMR question
. The answers were clear and decisive: “this is not a close case”.

The Omnibus decisions are not the end of the vaccine/autism lawsuits. Not by a longshot. The first step was an appeal, and the first appeal has been decided.

Here is the conclusion of the Judge who heard the appeal for the Hazelhurst case:

In hearing this appeal, the court is not without sympathy for Yates, the Hazlehursts, and the other children and families dealing with autism and autism spectrum disorders. And this court, like the special master, acknowledges both the burdens many of these families have faced and the tremendous love and support they have shown their children. The facts, however, do not support petitioners’ appeal and we have no choice but to deny their motion. Accordingly, for the reasons set forth above, the special master’s decision of February 12, 2009, is AFFIRMED.

I.e. the appeal failed. The decision stands. The Court holds that MMR does not cause autism.

The judge’s decision in the appeal gives a good summary of the original case. If you want to read about the Hazelhurst case, it would be the first place I would send you.

From the appeals judge’s ruling, here are the two “cardinal” flaws in the petitioner’s case:

1) First, the special master explained that petitioners’ experts based their opinions on the characteristics of the “wild-type” measles virus rather than on the characteristics of vaccine-strain measles, despite the fact that the measles vaccine is distinguishable from the wild-type measles virus in several key respects.

2) Second, the special master observed that petitioners’ experts further based their opinions on studies (detecting the presence of the measles virus in the gut tissue of autistic children) that the special master found to be unreliable.

The special master considered the presence of the measles virus in the gut to be the “linchpin” of the petitioner’s case. In other words, they needed to show reliable data or studies demonstrating that the virus was still in the tissues of the children long after the vaccination.
The two studies they had to rely on were (a) that by Dr. Wakefield’s team and (b) an unpublished study by Dr. Stephen Walker, presented as a poster at the 2006 IMFAR conference. Well, the Wakefield study was pretty well discredited, and the Walker study was never published.

In the appeal, the Hazelhurst’s lawyer argued that the testimony of Dr. Stephen Bustin should not have been considered. Amongst the arguments were that some of the information was submitted at the last minute.

No arguments were made that Dr. Bustin was wrong in his analysis of the O’Leary laboratory. That was one of those strange moments in law–no one challenged Dr. Bustin on being right. The judge hearing the appeal noted that the rules for the Vaccine Court are different from a typical court of law. Specifially, the rules are designed specifically to allow more information in to inform the Special Master. The judge further noted that under the typical rules of evidence, the Walker study would never be admitted anyway.

If you haven’t read about Dr. Bustin’s testimony, you should consider it now. Dr. Bustin basically discredited the entire “persistent measles in the gut” idea by showing that the O’Leary laboratory that made tests had serious methodological flaws and, basically, couldn’t make the tests at all.

The Hazelhurst’s lawyer then argued that the Special Master failed to include all the relevant evidence., In specific, that the Walker study wasn’t given due weight.

Again, one of those strange moments in law. The laywers moved directly from trying to get the Special Master to exclude evidence that was clearly relevant, to claiming that the Special Master had to include all relevant evidence. I guess that’s why I am not a lawyer. I couldn’t pull that off with a straight face.

As it turns out, even the witness for the Hazelhurts’ side stated that the Walker study wasn’t reliable:

Respondent additionally notes that Dr. Hepner herself acknowledged that the preliminary data from the study was “not useful at this time” (Cedillo Tr. at 682), declined to draw any conclusions about the biological significance of the Walker group’s findings (Cedillo Tr. at 682), and identified what respondent describes as several significant drawbacks to the study, including that the experiments had not been “blinded”28 and had lacked negative controls.

So, it is rather moot as to whether the Walker study was considered, since it doesn’t really provide substantial evidence to support the MMR theory.

The third main argument used in the appeal was that the Special Master failed to decide on a “critical issue”. Namely, whether regressive autism exists as a separate phenotype.

The Special Master wrote in his decision, and the appeals judge agreed: since the decision held that MMR doesn’t cause autism, there was no point in deciding on the question of regressive autism as a separate phenotype.

Given that the expert testimony was against this idea, it is probably better for the petetioners that this question was left unanswered.

The main result is, of course, the original decision was upheld. Looking forward, it doesn’t look good for the MMR theory to win in civil litigation from my perspective. The Bustin testimony is very damning to the little evidence there is, and that will be allowed in a civil case. The Walker study, however, will almost certainly not be allowed as it is unpublished and has severe limitation

Richard Deth – gambling man

27 Apr

Maybe you don’t know, or have forgotten who Richard Deth (pronounced to rhyme with ‘teeth’) is.

He is:

Richard Deth, Ph.D., is a neuropharmacologist, a professor of pharmacology at Northeastern University in Boston, Massachusetts, and is on the scientific advisory board of the National Autism Association. Deth has published scientific studies on the role of D4 dopamine receptors in psychiatric disorders, as well as the book, Molecular Origins of Human Attention: The Dopamine-Folate Connection. He has also become a prominent voice in the controversies in autism and vaccine controversy, due to his theory that certain children are more at risk than others because they lack the normal ability to excrete neurotoxic metals.

Deth became ‘hot property’ in the anti-vaccine autism groups after publishing a paper (with which there were numerous issues – see Bart Cubbins excellent video for details) that was funded by one of those anti-vaccine groups – Safe Minds. Interestingly, during an exchange with Kathleen documented at neurodiversity.com, it also came to light that Richard Deth was registered as a paid expert witness in the vaccine litigation omnibus proceedings. Professor Deth said:

“I thank you for alerting me to the fact that my name was included on that expert witness list. It was done so without my knowledge or permission. It might be related to a phone call from that law office that was logged to my office while I was away on vacation in February. I never returned the call.”

To which Kathleen replied replied:

“It was quite an oversight for the attorneys to fail to confirm your willingness to serve in that role prior to naming you as a plaintiffs’ expert in the Petitioners’ Initial Disclosure of Experts, and filing that document with the Court of Federal Claims. However, their certainty is understandable, given your indication during our brief telephone conversation that the lawyer with whom you discussed the matter was “Andy” Waters, lead attorney in the thimerosal cases.”

Deth didn’t comment any further. As many have discovered, if you want to go head to head with Kathleen you better make sure your i’s are dotted and your t’s are crossed.

One of the statements Deth made during their exchange stood out to me at the time.

…I would like to make a virtual wager that within the next 18-24 months scientific evidence will make the thimerosal-autism link a near certainty. If you are willing, I’ll let you name the stakes.

Deth sent his email on March 22 2006. Luckily for him, Kathleen took pity on him and declined his rather gauche offer.

So what does this mean? What does it prove?

Why, nothing. Nothing at all. I just wanted LB/RB readers to be perfectly clear that a strong _belief_ in a scenario doesn’t make one right. In fact, when we look at all the recent evidence for the various beliefs of the various anti-vaccine/autism groups – from the prediction that the Omnibus Autism cases would be a walkover for them, to David Kirby’s certainty that thiomersal causation would be vindicated by CDDS data in 2005, then 2007, to this example of ego from Richard Deth what we see is a clear picture of a set of people who are consistently and unerringly wrong. This is because they simply cannot see the science right in front of them. Even such an august figure as Richard Deth, Ph. D.

Thrown under the bus…but for a good cause, right?

21 Apr

America is a wonderful place. Where else can someone publish absolute garbage, refuse to retract it, accuse the government of being involved in a massive conspiracy–and still end up on a government committee?

I am speaking of Lyn Redwood. She is one of the coauthors on ‘Autism: a novel form of mercury poisoning’. This was ‘published’ in Medical Hypotheses. I put ‘published’ in quotes because Medical Hypotheses is a pay-to-publish pseudo-journal that has no review (peer or otherwise) at all. OK, the editor does check that the authors are talking about something medical, and makes sure that some sort of narrative is put together. But, scientifically? No review. Too many people, especially those parents with new autism diagnoses for their children, are unaware that “Medical Hypotheses” ‘papers’ have no place next to actual research papers.

If that piece of junk science wasn’t enough, Ms. Redwood was also a co-author on another less-than-worthless Medical Hypotheses ‘paper’, Thimerosal and autism? A plausible hypothesis that should not be dismissed. The first author on that “paper” was Mark Blaxill. Truly, one of the scary moments in the Omnibus proceeding came when the research head of ARI (Autism Research Institute) referred to Mark Blaxill as “brilliant”. No exaggeration–that was a frightening thought to this listener. Mr. Blaxill is probably rather bright and likely good at whatever he does professionally. But the idea that the information is traveling from him to the research head of the Autism Research Institute rather than the other way around is just scary.

The time to pay-to-publish retractions of these papers was years ago. Yet, both papers are still out there, and new parents usually won’t find out for a long time that those papers a junk.

Besides promoting bad science, what do Ms. Redwood and Mr. Blaxill have in common? Well, the Interagency Autism Coordinating Committee, for one thing.

Ms. Redwood sits on the Interagency Autism Coordinating Committee. This group helps coordinate the US Government’s research efforts on autism. Rather that fight for better understanding and services for, say, adults, the poor, or minorities with autism, Ms. Redwood filled meeting after meeting (after meeting) with struggles to get the wording of the Strategic Plan as close as possible to a government admission that vaccines cause autism.

Mark Blaxill sits on one of the working groups for the IACC, probably placed there by Ms. Redwood. Mr. Blaxill, also a co-author on a number of papers that any reasonable person would have retracted by now, has wasted considerable meeting time with long, insulting ramblings. I know there are people who appreciated Mr. Blaxill’s speeches, but I consider likening the other people on the committee to holocaust denialists insulting. Maybe I misinterpreted his repeated use of the phrase “Epidemic Denialists”. If so, I bet I’m not the only one. Somehow, I don’t think I’m wrong. It appears to be an insulting and deliberate choice of phrases.

Unfortunately for the undercounted communities like adults with autism, the poor with autism, minorities with autism–a number of our own–they present an “inconvenient truth” to people like Mark Blaxill and Lyn Redwood. They demonstrate that the numbers groups like SafeMinds use to promote the faux autism epidemic are terribly flawed. If we are still under counting people with autism in the U.S., how can we use the counts from the California Regional Centers or from education data so far as “evidence” of an “epidemic”?

I know I wrote about this issue recently. But, reading the expert report by Dr. Rodier, and writing about it, I realized anew that a few individuals have caused this harm. And, those few individuals could (and should) work hard to correct that harm.

So, in place of calling on the IACC to fund research that could help the under counted, Ms. Redwood and Mr. Blaxill got this paragraph:

Research on environmental risk factors is also underway. An Institute of Medicine workshop held in 2007 summarized what is known and what is needed in this field (Institute of Medicine of the National Academies, 2007). Numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury based preservative, thimerosal (Immunization Safety Review Committee, 2004). These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the research literature. Some do not agree and remain concerned that ASD is linked or caused by vaccination through exposure to Measles Mumps Rubella (MMR), imposing challenges to a weakened immune system, or possibly due to mitochondrial disorder. Public comment to the Committee reflected opposing views on vaccines as a potential environmental cause. Those who are convinced by current data that vaccines do not play a causal role in autism argue against using a large proportion of limited autism research funding toward vaccine studies when many other scientific avenues remain to be explored. At the same time, those who believe that prior studies of the possible role of vaccines in ASD have been insufficient argue that investigation of a possible vaccine/ASD link should be a high priority for research (e.g., a large-scale study comparing vaccinated and unvaccinated groups). A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

Let’s just pull that last sentence out for emphasis, shall we?

A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

It’s odd to me–I would have fought that language if I were Lyn Redwood. I would have pointed out that I have a broader perspective than just vaccines, and that I also care about development of effective treatments, services and supports. Isn’t it just a little sad that the people who are pushing the vaccine connection don’t have the view that effective treatments, services and supports for those with ASD’s are a top priority?

But, it wasn’t their top priority. It still isn’t. In the end, Lyn Redwood and Mark Blaxill, people who are on the IACC to represent the interests of the entire stakeholder community, threw the underrepresented autistic communities under the bus.

Omnibus Expert: Patricia Rodier

10 Apr

Autism just plain isn’t mercury poisoning. When can we move on?

Even some of the people who loudly promoted the mistaken idea that “autism is just a misdiagnosis for mercury poisoning” have backed off. But, the groups that promote autism as vaccine injury are packrats: once they’ve collected an idea, bad or not, they won’t ever let it completely go.

Some of you will be thinking, dang, another mercury post. I agree, there are a lot of good arguments against blogging about the mercury-autism connection any more. For one, it gives the idea press that it just doesn’t deserve.

I do think this is worth posting about, though. “This” is the expert report from Dr. Patricia Rodier, submitted to the Autism Omnibus Proceeding. In a single document, we now have an expert on both mercury toxicology and autism. Not faux experts, or worse, businesspeople and public relations people, but an actual, bone fide expert in both fields. I.e. we have a good document to give to people who are being snowed under by the misinformation campaign promoting autism as mercury poisoning.

When Patricia Rodier testified in the Autism Omnibus Proceeding, I was very impressed–and I blogged it right away. I remember at the time telling a friend that it was good to finally see someone officially debunking things like Sally Bernard et al.’s paper, Autism: a novel form of mercury poisoning. My friend pointed out that any college freshman in science (and most not in science) should be able to tear that “paper” apart.

Unfortunately, “should be able to tear the paper apart” isn’t enough. Many people don’t have the time and/or energy. So, many people still think that paper is valid. Let’s face it, that “paper” should have been retracted by the authors long ago, but they still soldier on with the “autism is mercury poisoning” message.

Dr. Rodier’s qualifications are quite good. Her summary is quite good:

As a research scientist who has studied both the toxic effects of methylmercury in animals and autism in children and animal models, I believe I am qualified to evaluate the scientific merit of the allegation.

She may be the only person in the world who has studied both mercury toxicity and autism.

What does she think? In a nutshell:

My conclusion is that the allegation has no scientific support and is highly improbable

Dr. Rodier notes that the comparison that autism and mercury poisoning appear similar isn’t even close.

In othcr words, because the symptoms of methylmercury poisoning
are not similar to those of autism, the authors have tried to construct a new, hypothetical kind of mercury poisoning from symptoms of toxicity of other mercury species and symptoms never reported for any kind of mercury exposure. The hypothesis is not based of facts; instead, the facts are being selected, manipulated, and shaped to fit the hypothesis. The hypothesis is then offered as evidence. But hypotheses are not evidence.

Ouch. Ouch, that is, if you are someone promoting autism-as-mercury-posinong.

Dr. Rodier can back up her words, as we discussed in the previous blog post. But, let’s say that again, Dr. Rodier uses research based facts, not manipulated hypotheses, to come to her conclusion.

I need to get a clean copy of that document, one that looks as good as the information it contains. That document needs to get into the hands of people being lured by the pseudo scientists promoting autism as mercury poisoning.

Thank you, Dr. Rodier for putting yourself on the line to testify. Thanks also to the HHS for allowing these reports to be made public.

Pardo letter on neuroinflamation

26 Mar

Neuroinflamation was a big subject in the Autism Omnibus. This was especially true in the “second theory of causation” hearings, which concentrated on thimerosal containing vaccines as a possible causative factor in autism.

Here’s a page from Dr. Aposhian’s presentation at the Omnibus (click to enlarge), which shows the basic logic flow.

aposhianslide76

Or, to put it simply–thimerosal gets changed to ethyl mercury which deposits mercury ions in the brain, causing neuroinflamation which causes autism.

Yes, there are a lot of of missing steps in order to prove this idea.   But, for now, let’s just think about neuroinflamation.  The term (neuroinflamation), as Dr. Aposhian makes clear in his report and slides, is somewhat new, having been coined in the 1990’s. Dr. Aposhian and others spent a lot of time discussing neuroinflamation, astrocytes and glial cells.

The research on neuroinflamation in regards to autism comes mainly from researchers at Johns Hopkins. In particular, Dr. Aposhian cites (on slide 79 of his presentation) the Vargas paper, pulling a quote:

Vargas et al., Neuroglialactivation and neuroinflammation in the brain of patients with autism. Ann Neurol57, 67-81, 2005,

“Our findings indicate that innate neuroimmunereactions play a pathogenic role in an undefined proportion of autistic patients…”

It is important to note that one of the authors on that paper was Dr. Andrew Zimmerman, whose expert report Kev recently blogged. That’s right, Dr. Zimmerman prepared an expert report for the government. The anchor author on the Vargas paper was Dr. Carlos Pardo.

It turns out that a letter from Dr. Pardo is included in the Omnibus docket as well. Here’s the introduction paragraph from Dr. Pardo’s letter:

As per our conversation last year, I would like to clarify some of the concepts regarding the role of neuroimmune response in the brain of patients with autism and the potential significance of such findings in the pathogenesis and pathobiology of the disorder.

Good–he’s trying to clarify some points of his paper. Just the sort of letter we want to read. It is rather thick on the science. Let me cherry pick one sentence, if I may:

These findings are inconsistent with the hypothesis of a potential toxic effect on astrocytes by neurotoxins or toxic material.

It strikes me that the families with claims in the vaccine court are in a really difficult position. Their lawyers and experts are arguing the thimerosal causation issue largely on the idea of neuroinflamation. The problem being that the key people in neuroinflamation and autism are experts for the other side.

The thimerosal cases depend on neuroinflamation. Does anyone else see this as a really tough battle to fight, given that the few world experts on the subject disagree with the contention that neuroinflamation in autistic brains is due to neurotoxins?

Is there an autism epidemic – the latest science

25 Mar

A new paper from Eric Fombonne is in electronic print at the journal Pediatric Research. It will apparently be published in the paper version of the journal some time after April.

The title is ‘Epidemiology of pervasive developmental disorders’ and as the name suggests, Fombonne looks at all the available quality epidemiology he can find relating to PDD’s.

This article reviews the results of 43 studies published since 1966 that provided estimates for the prevalence of Pervasive Developmental Disorders, including Autistic Disorder, Asperger Disorder, Pervasive Developmental Disorder Not Otherwise Specified, and Childhood Disintegrative Disorder.

Combining all these categories together Fombonne presents a prevalence of 60-70/10,000.

For autistic disorder, Fombonne says:

The correlation between prevalence and year of publication was statistically significant and studies with prevalence
over 7/10,000 were all published since 1987. These findings point towards an increase in prevalence estimates in the last 15-20 years.

For PDD-NOS, Fombonne explains that it is next to impossible to get accurate prevalence rates as:

This group has been much less studied in previous epidemiological studies…

Again, for Aspergers, Fombonne says that AS specific epidemiological studies are sparse but, in something of a surprise:

By contrast, other recent autism surveys have consistently identified smaller numbers of children with AS than those with autism within the same survey. In 9 out of 10 such surveys, the ratio of autism to AS prevalence in each survey was above unity, suggesting that the prevalence of AS was consistently lower than that for autism. How much lower is difficult to establish from existing data, but a ratio of 3 or 4 to 1 would appear an acceptable, albeit conservative, conclusion based on this limited available evidence. This translates into a prevalence proportion for AS which would be ? to ¼ that of autism. We therefore used for subsequent calculations an estimate of 6/10,000 for AS, recognizing the strong limitations of available data on AS.

Lastly, for CDD:

Eight studies provided data on childhood disintegrative disorder (CDD). Prevalence estimates ranged from 0 to 9.2/100,000. The pooled estimate based on eight identified cases and a total surveyed population of 406,660 children, was 2.0/100,000. The upper-bound limit of the associated confidence interval (4.0/100,000) indicates that CDD is a very rare condition, with about 1 case to occur for every 103 cases of autistic disorder.

Fombonne then tackles the question everyone wants an answer to – is there an autism epidemic?

In order to answer this accurately, he explains that there has to be tight control over incidence estimates (the number of new cases occurring in a population over a period of time) and prevalence (the proportion of individuals in a population who suffer from a defined disorder). Failure to control these gives false results. Bearing this in mind, Fombonne goes through the five approaches taken so far to try and determine if theres an autism epidemic or not.

1) Referral Statistics.
Trends in time for referral statistics are not reliable. They fail to control for things such as referral patterns, availability of services, heightened public awareness, decreasing age at diagnosis and changes over time in diagnostic concepts and practices. An example of the issues from referral statistics is:

Strong evidence of “diagnostic switching” was produced in California and in all US states indicating that a relatively high proportion of children previously diagnosed as having mental retardation were now identified as having a PDD diagnosis. Decreased age at diagnosis has also been shown to contribute to the rising numbers of children diagnosed with PDD. In the UK, Jick and Kaye (62) have shown that the incidence of specific developmental disorders (including language disorders) decreased by about the same amount that the incidence of diagnoses of autism increased in boys born from 1990-1997. A more recent UK study has shown that up to 66% of adults previously diagnosed with developmental language disorders would meet diagnostic criteria for a broad definition of PDD.

2) Comparison of cross-sectional epidemiological surveys
If I’m understanding his point here (and please correct me if I’m not) Fombonne is saying that too many epidemiological studies are uniquely designed – not enough attempt to replicate a previous study – and hence:

The most convincing evidence that method factors could account for most of the variability in published prevalence estimates comes from a direct comparison of 8 recent surveys conducted in the UK and the USA. In each country, 4 surveys were conducted around the same year and with similar age groups. As there is no reason to expect huge between-area differences in prevalence, prevalence estimates should therefore be comparable within each country. However, there was a six-fold variation in prevalence for UK surveys, and a fourteen-fold variation in US figures. In each set of studies, high estimates derived from surveys where intensive population-based screening techniques were employed whereas lower prevalence proportions were obtained from studies relying on passive administrative methods for case finding. Since no passage of time was involved, the magnitude of these gradients in prevalence can only be attributed to differences in case identification methods across surveys.

3) Repeat surveys in defined geographical areas
So this is the opposite of the above – these are studies where they are being replicated as closely as is possible. However, the issue here is that there are simply not _enough_ of these studies to form a definite conclusion. However, it may be worth noting that in the two studies Fombonne highlighted as being carried out in exactly the same way in exactly the same place to exactly the same age cohort – but just at two different times one showed no increase in prevalence whilst the other showed no increase at 4 sites and an increase at 2 sites.

4) Successive birth cohorts
This means in very large surveys with a wide age range, if the proportion of people who have autism rises this _could_ be a rise in incidence and therefore a good hint that there is an epidemic. I say _could_ as other possible causes need to be ruled out first.

…two large French surveys [used this method]. The surveys included birth cohorts from 1972 to 1985…, and, pooling the data of both surveys, age-specific prevalence showed no upward trend.

A US survey _did_ show an upward trend but:

…the increase was not specific to autism. These analyses also showed a marked period effect that identified the early 1990s as the period where the prevalence estimates started to go up in all ages and birth cohorts, coinciding closely with the inclusion of PDDs in the federal Individual with Disabilities Educational Act (IDEA) funding and reporting mechanism in the US.

5) Incidence studies
The few incidence studies did show incidence trends rising over short periods of time. As noted in point 4) above, this _could_ be attributed to an autism epidemic. However –

…none of these studies investigations could determine the impact of changes over time in diagnostic criteria, improved awareness and service availability on the upward trend.

Contrary to what people who _want_ there to be an autism epidemic, these are non trivial reasons. It stands to reason that if (for example) Birmingham, UK – the countrys second city, goes from having zero service availability and no means of diagnosis in 1960 to having numerous types of service availability both publicly and privately funded and a _lot_ of means of diagnosis in 2000 there will be a _lot_ more autistic people in Birmingham. A hell of a lot. When we then consider that the diagnosis criteria has widened massively than we go from a hell of a lot more autistic people to a _whole hell_ of a lot. If we _also_ consider that people who used to carry one kind of diagnosis are now being swapped to autism then we go from a whole hell of a lot to a descriptive term beyond my ability. This isn’t even science – its basic common sense. The only issue is – ‘a whole hell of a lot’ is not a very accurate measurement.

Fombonne closes by saying that – based on the available data – we still cannot really say one way or the other if there has been an autism epidemic. Remember when you read the quote below that its _incidence_ that gives us an epidemic.

Current evidence does not strongly support the hypothesis of a secular increase in the incidence of autism but power to
detect time trends is seriously limited in existing datasets. Whilst it is clear that prevalence estimates have gone up over time, this increase most likely represents changes in the concepts, definitions, service availability and awareness of autistic-spectrum disorders in both the lay and professional public. To assess whether or not the incidence has increased, method factors that account for an important proportion of the variability in prevalence must be tightly controlled. The possibility that a true change in the underlying incidence has contributed to higher prevalence figures remains, however, to be adequately tested.