Archive | National Autism Association RSS feed for this section

Why does it matter what happens to Andrew Wakefield?

8 Jan

People have been questioning the necessity of these latest revelations about Andrew Wakefield and suggesting that enough is enough or maybe that all this latest round of publicity will do nothing except make him a heroic martyr. This is possible.

However, for a number of reasons I really feel it is vitally important that not only is there some response but that that response comes at least partly from the autism community.

Firstly, I believe it is necessary for there to be a response full stop. These might be the same set of _facts_ that were uncovered during the GMC hearing but the difference here is that for the first time it has been established that the facts against Andrew Wakefield came about through what the BMJ refer to as fraudulent. This is a huge difference. Up until now it could’ve been argued that Andrew Wakefield simply made a mistake. After the events of the last two days, that can never be honestly argued again.

Secondly, there are a set of people who have been at the rough end of Wakefield’s fraud for the last 13 years. A set of people who have struggled to make new parents understand that there is no risk of autism from the MMR vaccine. Doctors. Particularly paediatricians and GP’s. It is vital that by establishing what Wakefield has done as fraud, the media ensure that the message is spread far and wide. They (the media) have something to atone for in this respect, being the original spreaders of the message that the MMR caused or contributed to autism. They now need to recognise their role in the past and help the medical establishment by ensuring Wakefield can never again spread his fraudulent claims via their auspices.

Thirdly, there is another set of people who have been at an even rougher end of Wakefield’s fraud. The sufferers of the falling vaccination rates of MMR. Its been well documented in numerous places, including this blog how people – particularly children – have been injured and died in the UK and US. The concept of herd immunity, no matter what some might claim is a real concept and when it falls, the level of protection falls. When it falls to far then the people who suffer are the very young, the very old and those who for genuine medical reasons cannot be vaccinated. Wakefield’s fraud needs to be spread far and wide in order for people to realise what he is, what he tried to do and what the consequences were in order to have some confidence in the MMR jab.

Fourthly, there is another set of people who have suffered heavily. This set of people are the silent victims of Wakefield’s perfidy. Autistic people. Wakefield and his supporters, TACA, NAA, Generation Rescue, SafeMinds, Treating Autism et al have turned autism into a circus. The aim of the last decade amongst serious autism researchers and advocates has been to

a) Raise awareness
b) Find evidence-based therapies that will help the life course and independence of autistic people
c) Protect the educational rights of autistic people

and getting research monies to meet these aims is long, hard and slow. Andrew Wakefield and his hardcore of scientifically illiterate supporters have actively derailed that process, dragging research monies away from these principled activities and towards their core aim of degrading vaccines and ‘proving’ vaccines cause autism. Wakefield himself has taken over US$750,000 worth of money to pursue a legal battle against the UK Gvmt. Just think of how that money could have enriched the life of just one autistic person.

However, this same set of people claim to be representative of the autism community. They write nonsense books about autism. They hold celebrity studded fundraisers for autism. They participate in rant-filled rally’s for autism. But none of them are really about autism. What they’re about is anti-vaccinationism.

Every one of these activities denigrate autism and autistic people. They take attention away from where it is needed.

We, the true autism community, made up of parents, autistic people, professionals of autistic people need to do two things. Firstly, we need to wrest back control of the autism agenda from these one-note people. Secondly, we need to speak to society at large and say ‘yes, some members of the autism community believed the fraudulence of Andrew Wakefield but not all of us did. Please don’t tar us all with one brush.’

What Andrew Wakefield has done has impacted everyone. We need to make sure that he and people like him can never affect us all in this way again. To do that we need to speak out about him, loudly and as long as it takes.

You can’t question vaccines without being destroyed….or can you

7 Jan

As part of the “balance” in the Wakefield fraud story, CNN brought in Wendy Fournier of the National Autism Association. It’s a bit of an odd choice as she hadn’t researched the claims in the BMJ article (“honestly, I don’t know the specifics Brain Deer is referring to in the article for BMJ”). That said, the interview is interesting to watch. She starts right out with a personal attack on Mr. Deer: “Brian Deer has proven himself to be quite the one-trick pony. Wondering if has anything else to do than write about Andy Wakefield”.

The defense doesn’t talk at all about the actual paper, the actual demonstrated instances of fraud. Instead, the interview focuses on the conspiracy defense that Mr. Wakefield and his supporters have chosen. It isn’t that the data were manipulated to produce a given result that’s the reason why the editors at the BMJ produced this article, it is because the vaccine program is so important that vaccine safety advocates are attacked.

Here are two quotes from this interview:

“Careers are destroyed whenever anyone dares to question the almighty vaccine program” and “you can’t question vaccines without being destroyed, there’s too much money at stake here”

http://i.cdn.turner.com/cnn/.element/apps/cvp/3.0/swf/cnn_416x234_embed.swf?context=embed&videoId=health/2011/01/06/intv.austism.study.defended.cnn

Consider the case of John Salamone. Have you ever heard of him? I hadn’t until I read Dr. Offit’s book, Deadly Choices. Mr. Salamone has a vaccine injured child. His son contracted polio from the oral polio vaccine. Mr. Salomone found out that there was a safer vaccine, the Salk vaccine, which was already in use in other countries. Mr. Salamone formed a group, informed parents against vaccine associated polio, and took his case to the government. It wasn’t an easy battle, by far. But he did eventually get heard and he made the change happen. The U.S. abandoned the oral vaccine.

He wasn’t ruined. There was no campaign to destroy him.

He was the right man, with the right skills to get the job done. He also had the truth on his side and he didn’t resort to fear and pseudo science.

Here is a quote from a parent “autism advocate” in one of the groups associated with the NAA, Generation Rescue. This statement was written on the blog these groups share, the Age of Autism. I don’t recall anyone from the NAA voicing an objection to this comment when it was made:

With less than a half-dozen full time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees

When people assert that the vaccine program is untouchable, that anyone who questions it will be “destroyed”, think about the changes that have already occurred. Think about John Salamone. Thank him for bringing about the change he did.

The National Autism Association tries and fails to defend Andrew Wakefield’s fraud

6 Jan

Of the groups pushing the vaccines-caused-an-epidemic-of-autism idea, the National Autism Association stands out. In a good way. They are the one group that actually has a non-vaccine segment to their agenda. They presented recently at the IACC on issues of safety. Unfortunately, they are stuck in the vaccine-causation debates of 10 years ago. Case in point: coincident with the lifting of the embargo on the BMJ’s pieces on Andrew Wakefield (e.g. How the case against the MMR vaccine was fixed) the NAA put out a statement defending Mr. Wakefield. (National Autism Association Says BMJ Article is Yet Another Attempt to Thwart Vaccine Safety Research)

As a part of this defense, they claim that Mr. Wakefield’s research has been replicated. The claim has been made before and upon scrutiny shown to be false. They use 5 references:

(1) Clinical Presentation and Histologic Findings at Ileocolonoscopy in Children with Autistic Spectrum Disorder and Chronic Gastrointestinal Symptoms, Arthur Krigsman, MD, et al, New York University School of Medicine, Autism Insights, 27 Jan 2010

(2) Endoscopic and Histological Characteristics of the Digestive Mucosa in Autistic Children with gastro-Intestinal Symptoms. Gonzalez L, et al. ArchVenez Pueric Pediatr, 2005;69:19-25.

(3) Panenteric IBD-like disease in a patient with regressive autism shown for the first time by wireless capsulenteroscopy: Another piece in the jig-saw of the gut-brain syndrome? Balzola F, et al. American Journal of Gastroenterology. 2005. 100(4):979-981.

(4) Childhood autism and eosinophilic colitis. Chen B, Girgis S, El-Matary W.. Digestion. 2010;81:127-9. Epub 2010 Jan 9].

(5) Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report, Timothy Buie, MD, et al, Department of Pediatrics, Harvard Medical School Pediatrics, Vol. 125 Supplement January 2010

Taking a lead from Catherina at JustTheVax, who showed last year that the “replication” of Mr. Wakefield’s results was not independent nor a replication, I will take a look at the 4 papers which are purported to “confirm” and association between autism and bowel disease.

1) A paper by Arthur Krigsman in Autism Insights. Arthur Krigsman was one of Andrew Wakefield’s partners at Thoughtful House when he wrote this. Both have since left. Autism Insights is an online journal whose editors include Dr. Krigsman himself. At the time Dr. Krigsman’s paper was published, the editorial board also included Andrew Wakefield. (strangely, Mr. Wakefield is no longer listed on the editorial board). Hardly independent. Right now, Autism Insights has 18 editors. They also have 8 published papers. Yes, they have twice the number of editors as papers. One has to question if this is a real journal. The Krigsman paper was timed to come out to support Andrew Wakefield at a time when his press was quite poor. Not a replication.

2) Gonzalez, et al.. From JustTheVax:

Gonzales et al, number 2, has been published in “Arch Venez Pueric Pediatr” which stands for Archivos Venezolanos de Puericultura y Pediatría. It was a bit tricky to get my hands on the paper, especially since the citation was not quite right, but I did manage and was not surprised to find that indeed the authors cannot replicate Wakefield’s 1998 “findings” of a distinct autistic enterocolitis, although they do report a higher incidence of gastrointestinal problems in their autistic group.

3) Balzola, et al.. Again, from Catherina:

Balzola et al, number 3, is a case report of one adult autistic patient with inflammed bowel.

4) Chen, et al.. Here’s the abstract, which spells out a rare association in 2 children, with possible mechanisms that may connect the two.

BACKGROUND/AIMS: The significance of the association between many gastrointestinal pathologies and autism is yet to be discovered. The aim of this report is to highlight an association between autism and microscopic eosinophilic colitis in 2 children. The possible mechanisms that may connect these two conditions are discussed.

METHODS AND RESULTS: A rare association between autism and microscopic eosinophilic colitis in 2 children is reported through retrospective chart review. Common causes of secondary eosinophilic colitis were excluded.

CONCLUSION: This report suggests the possibility of either impaired intestinal barrier function or an aberrant immune system that predisposes autistic children to sensitization to environmental antigens. Large controlled studies are needed to examine this hypothesis.

5) Bui, et al.. Here is the paragraph in that paper discussing Mr. Wakefield’s work:

In 1998, Wakefield et al. reported an association between ileocolitis and developmental regression in 12 children and coined the term “autistic enterocolitis.” From the same uncontrolled study they reported NLH of the ileum and colon as an abnormal finding in most children with ASDs. However, similar findings are known to be present in children with typical development, as well as children with food allergies and immunodeficiencies. The significance of these findings, therefore, is unclear. Wakefield et al. also proposed a causal relation between measles, mumps, and rubella (MMR) vaccination and autism, a suggestion that was later retracted by many of the original authors.

None of these papers is a replication of Mr. Wakefield’s work. And this is the best that the NAA can do to support Mr. Wakefield’s work, given 12 years of research since his paper in the Lancet. It also avoids the very clear problem with trying to “replicate” or “confirm” work that was fraudulent to begin with.

What is even more strange is that the NAA goes on in their piece to discuss the hypothesized link between autism and vaccines. Strange because Mr. Wakefield has been strenuously distancing himself from the impression that his paper “proved” a link between autism and vaccines.

Mr. Wakefield’s work was fraudulent. The BMJ says so in clearly and conclusively. It is time for some autism parent organizations to distance themselves from this man and his work. They are doing themselves and the autism communities as a whole any good by further association with him.

Safeminds comments on the latest thimerosal-autism study

21 Sep

SafeMinds is an organization which has long promoted the idea that thimerosal caused an autism epidemic. They may be the single greatest force that got the idea into the public’s eye, and got research funding focused on looking at the question.

SafeMinds has shown themselves to be very resistant to the very research they called for. Studies which show a lack of association between thimerosal containing vaccines (TCV’s) and autism are always rejected by SafeMinds. They are not alone in this, groups such as Generation Rescue and the National Autism Association (NAA) have also refused to accept the science.

So it was with no surprise that I read that SafeMinds had issued a statement against the study. The statement starts by pointing out that the study was funded and performed by those with conflicts–the CDC, Abt (an organization which does contract research for groups including the CDC), and HMO’s “which receive substantial funding from vaccine manufacturers to conduct vaccine licensing research”.

If we can’t use the HMO’s to work on such project, that sort of takes away the VSD as a tool. It certainly takes away the opportunity to do anything more than passive surveillance of the VSD data. One of the strengths of the Price study was the effort to do more than just review the medical charts. They worked with the children, both cases and controls, to verify that the autism counts were accurate. I bring this up because groups like SafeMinds frequently request access to VSD data.

SafeMinds also discusses the study methodology:

The study sample did not allow an examination of an exposed versus an unexposed group, or even a high versus a low exposed group, but rather the study mostly examined the effect of timing of exposure on autism rates.

There is much wrong with the above statement. Let’s start with where they are close to correct. The study sample did not allow for a direct comparison (with good statistics) of exposed vs. unexposed. This is true. This is because there are few unexposed kids (unexposed=no thimerosal exposure in this study. Unexposed does not mean no vaccines). If you look at exhibit 9.1.4 from the technical reports by Abt associates (the detailed reports on the study), you will see about 20-30 “unexposed” children. I.e. children with no thimerosal exposure. Of those, about 3-4 (out of 1,000) had no HiB, HepB or DTP vaccine vaccine at all (MMR isn’t listed as it is not a source of thimerosal). This is in line with estimates by the CDC of how many children are unvaccinated (typically about 0.4%). (as an aside–this points out how difficult it would be to do a good study of vaccinated vs. unvaccinated children using the VSD. Seriously, with 99.6% of kids receiving at least one vaccine, you would need a huge number of kids to get the number of unvaccinated needed for good statistics).

Here is that exhibit, with the no-exposure kids circled. (click to enlarge)

It would appear to this reader that the issue of unexposed vs. exposed isn’t so much one of “study design” as the limitations of the VSD itself. There just aren’t that many autistic kids to make a good statistical comparison of unexposed vs. exposed populations.

And, it should be noted, an unexposed vs. exposed comparison wasn’t the purpose of this study. One big question posed by SafeMinds and later picked up by groups such as Generation Rescue was simple: did the increase in thimerosal exposure from vaccines in the 1990’s result in an “epidemic” of autism? This is the question this study addressed.

I am at a loss as to why SafeMinds wrote this: “….or even a high versus a low exposed group, but rather the study mostly examined the effect of timing of exposure on autism rates”. Contrary to SafeMinds’ assertion, there is a large variation on thimerosal exposure in the study subjects. One of the surprising facts from this study was the number of children receiving thimerosal-free vaccines. This, together with variations in the number of vaccines administered, led to a much larger distribution in thimerosal exposures than one would expect based on the vaccine schedule alone.

Thus, the study was not on “timing” at all. It was, as advertised, on variation of exposure of thimerosal. The question is (at least to me), does the range of exposure amount to significant number of kids having “low” levels of exposure by SafeMinds’ definition?

The answer, it turns out, is yes.

Safeminds has the following statement on their website:

[Autism] remained rare (1 in 10,000) until the rapid escalation of vaccines beginning in the late 1980’s (from 10 shots of 7 antigens in 1983 to 36 shots of 15 antigens). Vaccines are a likely candidate to explain some, if not most of the rise in autism cases and possibly other chronic childhood disorders linked to immune system malfunction.

In one of the seminal papers on the thimerosal was co-written by SafeMinds founder Lyn Redwood Autism: a novel form of mercury
poisoning. In it, the authors state:

The discovery and rise in prevalence of ASD mirrors the introduction and spread of TMS in vaccines. Autism was first described in 1943 among children born in the 1930s (123). Thimerosal was first introduced into vaccines in the 1930s (7). In studies conducted prior to 1970, autism prevalence was estimated, at 1 in 2000; in studies from 1970 to 1990 it averaged 1 in 1000 (124). This was a period of increased vaccination rates of the TMS containing DPT vaccines among children in the developed world. In the early 1990s, the prevalence of autism was found to be 1 in 500 (125), and in 2000 the CDC found 1 in 150 children affected in one community, which was consistent with reports from other areas in the country (126). In the late 1980s and early 1990s, two new TMS vaccines, the HIB and Hepatitis B, were added to the recommended schedule (7).

I know I am spending a lot of time on this point, but it is important. The idea that there is a dose-response relationship between thimerosal and the presumed risk of autism is fundamental to the arguments made by groups like SafeMinds.

A sister organization to SafeMinds, Generation Rescue, says the same thing. In their take, “This is the schedule from 1983. If it worked for kids then, why doesn’t it work for kids now?”. Generation Rescue leader and spokesperson Jenny McCarthy wrote in her book, Healing and Preventing Autism: A Complete Guide, “In 1983, we had 10 shots on the vaccine schedule and autism was one in 10,000. Today there are 36 given and autism is nearing one in 100”. I.e. if we go back to the 1983 vaccine schedule, autism rates should drop to 1 in 10,000.

The 1983 schedule, as graphically presented in expensive full page newspaper ads by Generation Rescue, included 4 DPT shots (yes, the old whole cell pertussis vaccine). Each of those shots included 25 micrograms of mercury.

It strikes this reader that the thimerosal exposure from 4 DPT shots, the amount in the 1983 schedule that supposedly only resulted in 1 in 10,000 kids having autism, should be a “low” exposure amount. If groups are going to point to 1983 as a safer schedule and point to the increases in thimerosal exposure in the 1990’s as the major sign of the “epidemic”, we should be able to take their word that the levels in 1983 were somehow safer.

Let’s look at that figure from the Price study again, shall we? I will highlight how many kids have “low exposure” (i.e. comparable to the 1983 vaccine schedule) to thimerosal. Again, click to enlarge if you wish.

By my eye, something approaching 50% of the kids in the study received the thimerosal exposure of the 1983 schedule. Certainly more than 25%. Those highlighted in red have the same thimerosal exposure as kids did in 1983, so they should have the same autism prevalence that SafeMinds and Generation Rescue claim for that time period: 1 in 10,000.

If that group has a prevalence of 1 in 10,000–or even anything significantly lower than the prevalence of those with higher thimerosal exposure– this study would have found it.

In other words, a thimerosal-induced epidemic of autism didn’t happen. Even using the logic that SafeMinds used to hypothesize it in the first place:that, somehow, the thimerosal exposures in 1983 resulted in a low autism prevalence.

Yes, this is far from rigorous. But, so is the logic that claims that increased thimerosal exposure led to an autism epidemic.

If we read further into the SafeMinds response, we see some of the confusion:

The study sample did not allow an examination of an exposed versus an unexposed group, or even a high versus a low exposed group, but rather the study mostly examined the effect of timing of exposure on autism rates. There were virtually no subjects who were unvaccinated and few who were truly less vaccinated; rather, the low exposed group was mostly just late relative to the higher exposed group, ie, those vaccinating on time.

SafeMinds seems to be assuming this is a study on the number of vaccines, not the amount of thimerosal. They also don’t appear to have read the study thoroughly enough to note that, yes, there is a large fraction who were “less vaccinated” and, more importantly to this study, a large fraction who had lower thimerosal exposures. As noted above, the low thimerosal exposures result from the fact that many of the children received thimerosal free vaccines.

It is unfortunate that SafeMinds (and other groups like them) can not adapt to science as it comes out. Science which clearly shows that many of their hypotheses were wrong.

The Respectful Insolence blog also discusses some of the failings of the SafeMinds response.

Autism does not cause divorce

19 May

A new study at IMFAR reports:

Brian Freedman, PhD, lead author of the study and clinical director of the Center for Autism and Related Disorders at Kennedy Krieger Institute, said the findings seem to debunk a lot of the general understanding about high divorce rates among parents of children with autism. Dr. Freedman and his research team found that 64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.

This is the first scientific study (I believe) that has actually addressed this question. We can of course all recall the utterly unfounded scare stories of 80% put about by know-nothings such as Jenny McCarthy who said on an episode of Oprah:

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

and which autism organisation was that? You might not be amazed to discover its the equally know-nothing bunch at the National Autism Association.

NAA is presently conducting a national divorce survey of autism families. Several organizations and news outlets have used the often-quoted autism divorce rate of 80%–NAA hopes to confirm or update that percentage before referencing it in its program materials.

Get a clue NAA – maybe you should’ve done the research before letting rent-a-gob loose on the Oprah show.

Finding common ground at the IACC

1 May

The Interagency Autism Coordinating Committee (IACC) met Friday. New members were introduced, including Ari Ne’eman of the Autistic Self Advocacy Network.

The autism communities are far from unanimous in goals and methods. Given the makeup of the IACC, consisting as it does of governmental agencies plus public members of organizations that have been highly critical of each other, one might wonder if it anything could get accomplished.

But, in the end, most groups have more than a single goal. And, if you remember back to your set theory lessons, that leads to intersections–overlap–common ground.

I was reminded of this watching the IACC meeting. I could only watch bits and pieces during the day. One standout part of the morning came when Jim Moody of the National Autism Association gave a public comment talking about issues of safety, elopement, drownings–preventable deaths of autistics young and old.

Towards the end of the meeting I listened to a number of people refer back to this presentation. Amongst these commenters was Ari Ne’eman. Mr. Ne’eman obviously took the idea seriously and was calling for serious consideration of how this could be implemented into the Strategic Plan, calling for input from the services subcommittee.

I know the idea of safety are not new to Mr. Ne’eman. I contacted him recently when I was preparing a piece, Search and Rescue and autistics.

The members of the IACC span a wide diversity of ideas and viewpoints. Diversity, that’s a good thing.

But, working together for the common good: that’s common ground. Ideas that span diverse organizations and viewpoints. That is a very good thing.

Just how big is the National Autism Association anyway?

29 Apr

The Interagency Autism Coordinating Committee (IACC) is meeting tomorrow. On the agenda is “Welcome and Introductions of IACC Members”.

It is no secret that many groups have wanted a seat at the IACC table. Autism Speaks was previously represented by Alison Singer, but she left Autism Speaks to form her own organization, the Autism Science Foundation. The vaccine-causation groups have been very interested in increasing their presence on the IACC. Currently, they are represented by Lyn Redwood of SafeMinds. But, Generation Rescue and the National Autism Association and, I assume, TACA would like to have membership on the Committee.

In a recent blog piece discussing the IACC, Katie Wright, board member for the National Autism Association and Generation Rescue, pointed out the broad membership base of the NAA and TACA. Further, she stresses the importance of a “significant public constituency”

The National Autism Association, representing 12,000 dues paying parents and TACA representing 17,000 parents implored Dr. Collins to assign these organizations seats on IACC. Of the 19 members on the committee, only 3, Lyn Redwood, Lee Grossman and Stephen Shore represent a significant public constituency.

To me, the message seemed clear. The NAA or TACA should be on the IACC because they are so big. They represent such a large base of support.

I’ve been reading about how these groups represent “thousands” or “tens of thousands” of families for some time. The statements are always unsupported, so I tend to give them little weight. But when I read the above statemen, I spotted the phrase “dues paying”. To me, that reads as “a fact I can check”.

So I pulled the 990 forms for the NAA. 990 forms are the tax forms that charitable organizations file in the US, and they are made public, albeit after a couple of years.

The 2008 form 990 shows under “membership dues” that the NAA took in $17,640.

Membership dues to the NAA is $35/year for an individual, $60 for a family. This was the same in 2008.

Taking the $35 value, that gives a membership for the NAA of 504 (an upper bound estimate). Very respectable. Not 12,000, though. Perhaps they’ve had a major membership boom since 2008. Perhaps I misunderstood something. But, this fact check would suggest that the 12,000 claim for the NAA’s membership is, perhaps, somewhat high.

Maybe 2008 was a bad year for the NAA? Checking the other Form 990’s for the NAA gives the following amounts for dues collected:

2006: $14,950
2007: $22,592
2008: $17,640

Hmmm. Looks like they may have peaked in 2007.

Perhaps there are a number of dues paying members in the NAA chapter. Guidestar shows a number of these NAA chapters. The few I checked (like the Northeast Ohio chapter) report no dues.

I’m open to being corrected, with proof. But, for now, it looks to this observer that the National Autism Association membership is much less than the 12,000 claimed.

Whether the size is important, that is a discussion for another post.

IACC calls for $175 million in autism and the environment research

5 Feb

The Interagency Autism Coordinating Committee has posted the revised Strategic Plan. I blogged it recently here on LeftBrainRightBrain. I made a note of the large commitment to environmental causation research. I thought it worthwhile to highlight that section, since this is the cause of so much criticism of the IACC.

Strangely, the criticism doesn’t come from those who are supposedly “It’s all genetic” types. No, the “it’s all environmental” groups seem to be very loud in complaining that all the research funding is going into genetics.

The Plan is divided by a number of questions. Research into causation is listed in Question 3: “What Caused This To Happen And Can This Be Prevented?”

Under that category, there are seven projects on environmental or gene-environment research. Seven out of 10 projects. The estimated budget for all these projects? $175,900,000.

In other words, 70% of the projects and, if I did my math right, nearly 70% of the funding for causation is estimated to be going to environment and gene-environment projects.

This would seem like a great victory for those who have lobbied for more environmental research. I have yet to see anyone from that group even mention the new Strategic Plan, much less the large commitment to environmental research. Where are the statements from SafeMinds (who have a very vocal member who sits on the IACC proper and another who is on a working group)? How about Generation Rescue? The National Autism Association?

In my opinion, these groups really don’t care much about environmental causation unless it is either mercury or vaccines. Hey, I could be wrong. Let’s see if they surprise me with some acknowledgment of this effort by the US Government.

Here are the objectives if you would like to read for yourself.

Short-Term Objectives

1. Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. Studies should investigate factors contributing to phenotypic variation across individuals that share an identified genetic variant and stratify subjects according to behavioral, cognitive, and clinical features. IACC Recommended Budget: $43,700,000 over 4 years.
2. Within the highest priority categories of exposures for ASD, identify and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011. IACC Recommended Budget: $3,500,000 over 3 years.

3. Initiate efforts to expand existing large case-control and other studies to enhance capabilities for targeted gene – environment research by 2011. IACC Recommended Budget: $27,800,000 over 5 years.
4. Enhance existing case-control studies to enroll racially and ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years.
5. New objective
Support at least two studies to determine if there are subpopulations that are more susceptible to environmental exposures (e.g., immune challenges related to infections, vaccinations, or underlying autoimmune problems) by 2012. IACC Recommended Budget: $8,000,000 over 2 years.

6. New objective
Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2012. Estimated cost $56,000,000 over 2 years.

Long-Term Objectives

1. Conduct a multi-site study of the subsequent pregnancies of 1,000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. IACC Recommended Budget: $11,100,000 over 5 years.
2. Identify genetic risk factors in at least 50% of people with ASD by 2014. IACC Recommended Budget: $33,900,000 over 6 years.
3. Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. IACC Recommended Budget: $25,100,000 over 7 years.
4. Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. IACC Recommended Budget: $44,400,000 over 5 years.

Read more: https://leftbrainrightbrain.co.uk/2010/02/iacc-strategic-plan-is-up/#ixzz0edI3Pe8h

With the facts against them Dr. Wakefield’s supporters appeal to emotion

3 Feb

I should stop being shocked and amazed at how little groups like the Age of Autism blog think of their readership. Sorry to put it so bluntly, but it is pretty clear that they expect us all to just read what they have to say and never go to the original sources and think for ourselves.

Case in point, the GMC hearing on Dr. Andrew Wakefield. Dr. Wakefield was guilty of ethical violations in the treatment of his disabled patients. Not once, not twice but many many times. But you wouldn’t know that to read some of the reports on the blogs and even a couple in newspapers.

We have the NAA SafeMinds and TACA telling us all about how bad this ruling is. We have been told that there was “false testimony”.

OK, take a look at the actual charges. Just for a moment. Here are a few examples

1) Dr. Wakefield took money from the Legal Aid Board (LAB) for procedures paid by the NHS. He then diverted some of the LAB money to other projects.

2) Dr. Wakefield got ethical permission to do his study in December 1996, only on patients enrolled after that date. However, he had already started research on children. Here are two examples:

Child 2 had an MRI, colonoscopy and lumbar puncture in September of 1996.

Child 1 was also a research subject without ethical approval. Tests were performed which were not in the clinical interests of the child.

3) For people who promote the myth that “the only thing he did was start early”, note that Dr. Wakefield’s team did invasive tests that were not called for. For example:

Child 3 was also a research subject without ethical approval, having started before the approval. He underwent a lumbar puncture even though: “The Panel has taken into account the fact that there is no evidence in Child 3’s clinical notes to indicate that a lumbar puncture was required.”

Was this the result of some “false testimony? According to the GMC ruling, experts on both sides stated that the lumbar puncture was not clinically indicated.

Experts on both sides, Professor Rutter and Dr Thomas both considered that such a test was not clinically indicated.

Dr. Thomas is not accused by the defenders of Wakefield as “giving false testimony”.

The above are only a few of the examples of clear misconduct on the part of Dr. Wakefield.

How many times must a man be found guilty of not doing what was in his patients’ clinical interests before we are allowed to consider him as, well, someone who doesn’t always put his patient’s clinical interests first?

Kim Stagliano has taken to the Huffington Post with “The Censorship of Autism Treatment“. No mention of the actual charges. No mention of the fact that Andrew Wakefield was guilty. No mention of the fact that Andrew Wakefield’s research efforts for the past 12 years have centered on repairing his own damaged reputation, not on autism treatment.

Can you find a single mention of the word “ethics” in her post? How about any comment about the actual charges levied against Dr. Wakefield?

You know you are in trouble just with the title from this story: MMR doc’s just guilty of caring . At least that article makes one clear statement:

It [the GMC ruling] focused on the methods of research used, some of which were undoubtedly questionable, but which were performed in the name of finding solace for desperate parents convinced their children had changed for ever following their one-size-fits-all MMR injection.

Yes, you can be unethical if you are “finding solace for desperate parents”.

A blog post by the National Autism Association stated:

“Many parents of children with autism view the GMC investigation as little more than character assassination of a physician brave enough to investigate controversial issues”

Well, not this parent. Anyone who paints the GMC investigation as “character assassination” didn’t read the ruling. Seriously, trying to dismiss this fact-filled ruling as “character assassination” is just plain bizarre.

another post comments, discussing the work Dr. Wakefield’s team performed on his study subjects:

the procedures involved were routine

and

No children were harmed and no parent or guardian has complained about the care these three men provided.

Lumbar punctures are hardly “routine”. Further, there is no reason to do them if not clinically indicated. Colonoscopies are not routine, especially in patients whose symptoms don’t warrant them. Say, as in Child 1.

One child suffered a perforated bowel (in 12 places!). His family won a lawsuit against the Royal Free hospital.

High Court papers alleged that the colonoscopy procedure performed on Jack in 1998 was ‘not clinically indicated or justified’. They also claimed the ‘principal reason’ for the surgery was to further research into links between autism and bowel conditions rather than Jack’s clinical needs.

How does that not count as not “harmed”? Is it because he wasn’t one of the original 12 from the study in The Lancet?

The behavior of the Wakefield supporters is totally predictable. They have no science. They have no first (or second) tier researchers. They rely heavily on Dr. Wakefield. Who else has the perceived stature of Dr. Wakefield for them? When Brian Deer broke the story that Dr. Wakefield may have “fixed” data in his study last year, there was an immediate reaction from the Wakefield supporters: give him faux awards! Make him the keynote speaker at their conventions!

For the past year the message has been “Dr. Wakefield has not been discredited”. They’ve lost that now.

We’ve been warned that they are bringing out their big guns. Yes, David Kirby will blog about this on the Huffington Post. With apologies to Mr. Kirby, but when he’s their “ace in the hole”, you know they don’t have much.

As I finished this, David Kirby came up with his post: “The Lancet Retraction Changes Nothing”. Joining in the style of the times, Mr. Kirby also ignores the actual GMC ruling. Nothing that actually defends Dr. Wakefield against the real charges.

Seriously, go read for yourself. It’s David Kirby with his usual talking points and straw men.

I hope David Kirby is wrong. I hope that things have changed. I hope that the future is a world where the loudest voices in the autism communities fight for a better life for autistics, rather than for a political goal of recognition for bad science, badly done.

I hope.

Why don’t the so-called “vaccine safety” orgs talk about vaccine safety?

30 Oct

I really do plan to get back to real autism related subjects. I do. This subject just came up yesterday and it really bugs me so I decided to write something quick.

One of the most common statements from the groups (Generation Rescue, Think About Curing Autism (TACA), the National Autism Association, SafeMinds….) who promote the vaccines-caused-autism-epidemic idea is that they are “vaccine safety” groups, not “anti-vaccine”. The self-named “National Vaccine Information Center” is, I would think, supposed to have vaccine information.

One vaccine these groups love to hate is Rotateq, a vaccine against rotavirus infection. Why? Because it was invented by a team including Dr. Paul Offit, who just so happens to be one of the most vocal critics of the vaccine-caused-autism-epidemic.

Take, for example, this comment by SafeMinds member, and Age Of Autism blogger Mark Blaxill:

“Paul has saved hundreds of thousands of lives (granted mostly in underdeveloped countries, but rotovirus still kills a small few in the US).”

That’s quite an extravagant assertion, and almost certainly false. What evidence do you have that Rotateq (Offit’s invention) has been adminstered in sufficient quantities to prevent death in developing countries from complications of diarrhea? Rotateq is deployed in only one country besides the US. Here in the US we know Rotateq (and Rotashield before it) has CAUSED death and have little information that it has prevented any.

The consistent hyping of the benefits of marginally beneficial vaccines is one of the most disturbing features of a vaccine development industry run amok. Rotateq is perhaps the most egregious example of a vaccine product that provides next to zero benefit in the markets in which it has been deployed.

Let me be clear. In the markets in which it might have value, Rotateq is far too expensive to be widely deployed and is therefore rarely used. In the markets in which it is not needed, it is mandated at high prices and used widely with little benefit and documented (and almost certainly underestimated) serious risk. Those mandates and high prices are justified by a marketing non sequitor that Josh perpetuates here: pointing to deaths outside the geography in question as justification for a vaccine blockbuster that can have no impact whatever on those deaths.

Orwell never dreamed of doublespeak as bad as this.

What made this comment stick in my mind is the unsupported claim that Rotateq “CAUSED” death (nice use of all caps, there, by the way).

I am also drawn to the common belief (not directly expressed in the above quote) that there is no or only minimal safety research done.

This week, the CDC put out an MMWR (Morbidity and Mortality Weekly Report) on the effects of Rotateq. The cliniical trial showed that Rotateq works. The surveillance shows Rotateq works–the number of submitted samples that tested postive went down after Rotateq was introduced.

The big point I’d like to bring to light was a recent talk given at the Advisory Committee on Immunization Practices (ACIP) meeting. They are monitoring intussusception in children given Rotateq. Intussusception is an intestinal problem, potentially fatal, that was linked to the previous rotavirus vaccine. It is why that vaccine, Rotashield, was pulled from the market. As such, it is good an proper that they monitor intussusception with Rotateq.

The results?

Results provide no evidence that RotaTeq®receipt is associated with an increased risk for IS [intussusception] 1-30 days or 1-7 days following vaccination.

Typically those trying to claim that Rotateq is dangerous use the Vaccine Adverse Events Reporting System (VAERS). Any event reported to VAERS is taken to be caused by the vaccine. VAERS is a “passive” system. People report into VAERS and no one checks that the diagnoses are accurate. Also, intussusception happens even without vaccines. So you really can’t take every VAERS report as a causal event–i.e. just because someone reports to VAERS that a child had intussusception sometime after Rotateq, that doesn’t mean Rotateq caused it.

Do I expect people like Mr. Blaxill to stop claiming that Rotateq is dangerous? No. But I put this out there to take away any last shred of “plausible deniability”. They, the self-styled “vaccine safety” groups, don’t report on actual vaccine safety studies. That doesn’t mean they don’t read them and know about them.