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Age of Autism threaten doctors and also make clear how anti-vaccine they are

12 Mar

On a Facebook page entitled ‘Fan photos from Age of Autism‘ you will find this (click for bigger):

Lets not kid around here, this is a direct threat of violence towards people carrying ‘syringes’ i.e. people who might want to vaccinate children. I have no idea if Jenny McCarthy has any knowledge of this photo but its clear from the title ‘fan photos _from_ the Age of Autism, that Age of Autism clearly do.

Lets also be clear about the utterly anti-vaccine message of this image. The editors continually describe themselves as ‘pro-vaccine safety’. Let me suggest to them that creating a picture of Jenny McCarthy threatening people carrying syringes in a medical setting isn’t pro-vaccine safety. Its anti-vaccine pure and simple.

A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

15 Feb

I bring this up because there is a common argument that the autism “rates” in places like Denmark and Sweden are much lower than those in the US and elsewhere. This is used to try to negate studies using those country’s populations in, for example, showing that there is no increased risk from thimerosal or the MMR vaccine. This error often stems from comparing “incidence” to “prevalence”.

Is the autism prevalence low in Denmark? Not really. This paper just out (and other reports previously, including this one cited by Steven Novella) show a prevalence pretty comparable to the US.

J Autism Dev Disord. 2011 Feb 11. [Epub ahead of print]
A Comparison of Autism Prevalence Trends in Denmark and Western Australia.

Parner ET, Thorsen P, Dixon G, de Klerk N, Leonard H, Nassar N, Bourke J, Bower C, Glasson EJ.

Institute of Public Health, Department of Biostatistics, University of Aarhus, Aarhus, Denmark.
Abstract

Prevalence statistics for autism spectrum disorders (ASD) vary widely across geographical boundaries. Some variation can be explained by diagnostic methods, case ascertainment and age at diagnosis. This study compared prevalence statistics for two distinct geographical regions, Denmark and Western Australia, both of which have had population-based registers and consistent classification systems operating over the past decade. Overall ASD prevalence rates were higher in Denmark (68.5 per 10,000 children) compared with Western Australia (51.0 per 10,000 children), while the diagnosis of childhood autism was more prevalent in Western Australia (39.3 per 10,000 children) compared with Denmark (21.8 per 10,000 children). These differences are probably caused by local phenomena affecting case ascertainment but influence from biological or geographical factors may exist.

Prevalence of 68.5 per 10,000 children. A previous estimate was 80 per 10,000. Generation Rescue claimed a rate of 1 in 2200 (4.5 per 10,000) when they tried to make the case that…oh I bet you can guess…that vaccines cause autism. The 1 in 80 figure was already published, so I doubt they will change their story given yet another study.

Jenny McCarthy backs away from vaccines

3 Feb

As I blogged recently, Paul Offit was a guest on a US show called The Colbert report. Whilst emailing him about his appearance he mentioned the following:

Of interest, one of the show’s staff said that xe had been called by Jenny McCarthy (which I assumed meant Jenny McCarthy’s handlers), who told xyr not to mention Jenny’s name because *Jenny no longer speaks out against vaccines* . [Jenny’s handler was told] that Colbert wouldn’t mention her name but I was welcome to. The opening came when Colbert said he hadn’t heard about the science. But I didn’t mention McCarthy.

My, my. I wonder if anyone has told the founder members of Generation Rescue this little factoid? And what use to them is a Jenny McCarthy that won;t spout off about vaccines at the drop of an opinion?

Jenny McCarthy joins the defense of Andrew Wakefield

12 Jan

One of the defenses of Andrew Wakefield is that his paper doesn’t actually claim to have proven that MMR and autism are linked. You can find it in the interviews, you can find it on the Generation Rescue (Jenny McCarthy’s autism organization) website:

The mainstream media is in a frenzy over a new “study” claiming that Andrew Wakefield’s 1998 Lancet paper was fraudulent. For years, the media has mischaracterized Wakefield’s work as implicating the MMR vaccine in the autism epidemic. This was never true, as Wakefield himself wrote in the conclusion to his paper:

“We did not prove an association between measles, mumps, and rubella vaccine and the syndrome described.”

You can find it in Jenny McCarthy’s blog post on the Huffington Post:

Is that the whole story? Dr. Andrew Wakefield’s study of 12 children with autism actually looked at bowel disease, not vaccines. The study’s conclusion stated, “We did not prove an association between measles, mumps and rubella vaccine and the syndrome described [autism].”

And, they are correct. The paper does state that. And it is correct, the study did not prove any link. Which leaves us with the question: how could the press have made such a mistake as to think that the paper supported a link?

For starters, from Andrew Wakefield himself.

From the video that his employer at the time, the Royal Free Hospital put out:

DR ANDREW WAKEFIELD: I think if you asked members of the team that have investigated this they would give you different answers. And I have to say that there is sufficient anxiety in my own mind of the safety, the long term safety of the polyvalent, that is the MMR vaccination in combination, that I think that it should be suspended in favour of the single vaccines, that is continued use of the individual measles, mumps and rubella components.

He called for a suspension of the MMR vaccine at the time. Pretty strong message to send to parents.

In addition, as Jenny McCarthy tries to distance Andrew Wakefield from linking MMR and autism, let’s take a look at her own website, Generation Rescue dot com. They claim that the number one paper that supports the idea that a trigger of inflammation and the current resultant behaviors is the Wakefield 1998 study in The Lancet:

Children with neurological disorders are often suffering from severe gastrointestinal distress and inflammation. A trigger of this inflammation and the resultant behaviors is the MMR vaccine.

We cite four published studies that support this position:

Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children
Lancet 1998 Feb 28 Wakefield AJ, Murch SH, Anthony A, Linnell J, Casson DM, [University Department of Medicine, Royal Free Hospital and School of Medicine, London, UK]

Not surprisingly, the exact same text is included on the “14 studies” website, a site set up by Generation Rescue.

So, according to Generation Rescue, the Lancet article supports the position that the MMR is a trigger, even though the article itself says it doesn’t prove a link.

Generation Rescue and Jenny McCarthy have spent years putting the notion of a link between MMR and autism into the public’s mind. They have relied, heavily, upon the Lancet paper to make this assertion. And now they blame the media for propagating this idea?

Fact checking the Age of Autism’s defense of Andrew Wakefield

11 Jan

The BMJ article, How the case against the MMR vaccine was fixed, has had a lot of media coverage in the United States. With that coverage has come the defense of Andrew Wakefield, by himself and a few others. As a part of the defense (arguably the bulk of the defense) has been an attack on Brian Deer, the investigative reporter who wrote the article. I say attack because the main accusation, as you will read below, is false. Easily verified as false.

Consider this, on CNN’s Anderson Cooper 360, Mr. Wakefield made the accusation:

WAKEFIELD: Well, that’s interesting you should say that, because he was supported in his investigation by the Association of British Pharmaceutical Industries, which is funded directly and exclusively by the pharmaceutical industry. So…

On CNN with Ali Valshi, Generation Rescue founder J.B. Handley made the following statement:

“The British Medical Journal is only publishing allegations from a single investigative journalist named Brian Deer, who was funded by a pharma front group for four years to investigate Andy Wakefield.”

He later states that Brian Deer was “…funded by pharmaceutical groups from the getgo”.

Where did this accusation come from?

In a blog post, Mr. Handley let’s us know how he came to this conclusion:

In fact, Deer was originally funded to investigate Andy by a front group for the Association of the British Pharmaceutical Industries, just as Andy Wakefield said. From a confidential source:

“Deer was provided with free assistance by Medico-Legal Investigations a company owned and controlled by the Association of the British Pharmaceutical Industry – I have documentation on this. MLI specialise in getting medical doctors prosecuted by the General Medical Council. And that was done before he published in The Sunday Times in Feb 2004.”

We also see the story shifting we also see the story shifting. Instead of “funded from the getgo” or “funded by a pharma front group for four years” we find that he was given “free assistance” We don’t even know how much free assistance.

An unsupported assertion is made that the company is “owned and controlled by the Association of the British Pharmaceutical Industry”.

At least we have something we can verify. A claim like this should be verified, one way or the other. So I did. I contacted Medico-Legal Investigations. I posed a simple question:

You may be aware that Brian Deer has recently published the findings of his investigations showing that Andrew Wakefield committed research fraud in his investigations into MMR and autism. In retaliation, Mr. Wakefield and his supporters are claiming that Mr. Deer is conflicted himself. As part of this, they claim:

“When Brian Deer began his investigation of Andy Wakefield, he was supported by a pharmaceutical front group”

To support this, they claim:

“Deer was provided with free assistance by Medico-Legal Investigations a company owned and controlled by the Association of the British Pharmaceutical Industry – I have documentation on this. MLI specialise in getting medical doctors prosecuted by the General Medical Council. And that was done before he published in The Sunday Times in Feb 2004.”

Can you confirm whether this statement is, in fact, true?

The response?

The statement in bold lettering is totally false. We had no idea he was undertaking this investigation until he was about halfway through. At that point, and knowing that we were the only people in Europe experienced in the investigation of research fraud and misconduct, he contacted us to seek advice on a general issue related to Ethics Committees. We had a one off meeting with him and were able to offer guidance without knowing the details of the confidential investigation. I would like to know how anyone can say we are a pharmaceutical front group – we have always retained our independence.

We have never been owned or controlled by the ABPI – that is complete and utter nonsense. We have been supported by the ABPI and, indeed, the medical Royal Colleges. In order to ease our cashflow crises (there is never enough work to cover the costs of running a business) a few pharma companies paid an annual subscription to us in return for reduced rates for training and investigations. That does not mean that we were controlled by them. I pay annual subscriptions to magazines and get cheaper copies but I do not have editorial control!

Finally we specialise in the investigation of possible fraud/misconduct in research. When we are 70% certain that we have enough evidence to prove serious professional misconduct we report the facts to the GMC who conduct an Inquiry into the allegations. We also investigate other health sector matters and if a criminal offence is disclosed we report to the police or embark upon a private prosecution through the lawyers of our clients (other statutory bodies). The protection of patients is primarily our concern.

I hope this helps

Shall we count the errors in Mr. Handley’s attack?

1) Medico-Legal Investigations had no part in the investigation. They only offered a one-off meeting on medical ethics. Medico-Legal Investigations was unaware of the specifics of Mr. Deer’s investigations.

2) Medico-Legal Investigations is not “owned and controlled by the Association of the British Pharmaceutical Industry”. Thus it is not a “front group”.

3) On top of all that, Mr. Deer was not even funded by Medico-Legal Investigations.

4) The association with Medico-Legal Investigations was a simple meeting, as Mr. Deer was over half way through his investigation. The association was not “from the get go” and was not “four years” (funded or not).

In essence, we see what Mr. Wakefield and his supporters are reduced to: a publicity campaign. Get their message out, accurate or not. Attack the source rather than address the allegations.

The Big Lie – what Andrew Wakefield did was possible and fraudulent

10 Jan

Earlier this week, the blog Child Health Safety published a piece claiming it was impossible for Andrew Wakefield to have acted fraudulently. Earlier today, JB Handley of Age of Autism published a similar piece:

“It was not possible for Wakefield or anyone else to falsify the prior clinical records of the children because no one at the Royal Free Hospital London had them nor is it normal practice for them to have had them. So there could be no fraud over ‘altering’ those histories. It just was not possible.”

Plain English: In Britain, when you are referred from a local doctor to a major hospital, like the one where Andy worked, your previous doctor’s records DO NOT travel with you.

Hmmm. Lets look at the definition of the claim of fraud from the editorial in the BMJ.

The Office of Research Integrity in the United States defines fraud as fabrication, falsification, or plagiarism. Deer unearthed clear evidence of falsification. He found that not one of the 12 cases reported in the 1998 Lancet paper was free of misrepresentation or undisclosed alteration, and that in no single case could the medical records be fully reconciled with the descriptions, diagnoses, or histories published in the journal.

This quite clear – but don’t CHS blog and JB Handley have a point? If Andrew Wakefield couldn’t see the NHS records, how could he have falsified data? He might have been wrong, but fraud? No. If Wakefield couldn’t have seen those NHS records he could not have altered data from them to enhance his Lancet piece.

Except he _did_ see these children’s NHS records. From the very paper itself, we can glean the following:

12 children (mean age 6 years [range 3–10], 11 boys) were referred to a paediatric gastroenterology unit
with a history of normal development followed by loss of acquired skills, including language, together with diarrhoea and abdominal pain. Children underwent gastroenterological, neurological, and developmental assessment and review of developmental records.
Ileocolonoscopy and biopsy sampling, magnetic-resonance imaging (MRI), electroencephalography (EEG), and lumbar puncture were done under sedation. Barium follow-through radiography was done where possible. Biochemical, haematological, and immunological profiles were examined.

…

Developmental histories included a review of prospective developmental records from parents, health visitors, and general practitioners.

This is quite clear. Wakefield saw the NHS records of the Lancet 12. The claim that he didn’t is incorrect at best.

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.

JB Handley of Generation Rescue on CNN

6 Jan

First of all, here’s the transcript of Handley on CNN, courtesy of Liz Ditz:

Parker: Now joining us from Portland, Oregon I J.B. Handley. JB is the father of an eight-year old with autism, and he is a founder of Generation Rescue, a group that believes that there is a connection between autism and vaccination. Welcome JB

JB Handley (JBH): Thanks for having me.

Parker: Thank you Did today’s report cause you to reconsider your position on vaccines at all?

JBH: No, not one bit.

Parker: So, explain that. Why doesn’t this affect the way you think?

JBH: You know the original Wakefield study looked at 12 children. All 12 had autism. The only conclusion of the study was that the 12 were suffering from a new form of bowel disease. Andy Wakefield also reported that 8 of the parents said that their children regressed after the MMR vaccine. So the notion that his study ever incriminated MMR as causing autism is false. and the vaccine industry continues to beat this dead horse.

Parker: so you think that um when you talk about regression you are saying not so much that uhm the vaccine causes autism but that it causes a regression? And what does that mean to you?

JBH: No. What you hear from many parents, and my son is one of these, is that the children are developing typically, and my son’s case up to 14 months he was normal, and then then they gave a regression, they start to lose skills, they start to lose milestones. I have personally talked to about a thousand parents who all report that their children where that regression took place immediately following a vaccine appointment.

It’s important for parents to understand that children are given 36 vaccines in the US by the time they are the age five. The MMR only accounts for two of those 36 vaccines. Typically the shots are given simultaneously so the average child will get six vaccines in a single appointment, yet we don’t have a single piece of research to understand the potential risk of all those vaccines at once. So when someone tries to tell me that MMR alone doesn’t cause autism, but I take my child in for a vaccine appointment, and they are getting six shots in 10 minutes, how am I supposed to feel reassured?

Spitzer: I say this with overwhelming sympathy for you and for your son, but just listening to you I’ve got to ask the question: there isn’t a single study, and we’ve looked at all the science, that says there’s any causal link between these vaccines and autism. And I know you are saying there is

JBH: But that’s not true

Spitzer: there isn’t a study that disproves it, but there’s no affirmative causal link there. And so don’t don’t you think it would make more sense to look at other potential potential causative factors?

JBH: What you are saying is simply false. There is a study out of SUNY Stonybrook within the last six months that compared a group of children who got the entire round of HepB vaccine, and a group of children who didn’t, and found autism was three times more likely in one group. There’s a new study out of the University of Pittsburgh that took primates and vaccinated a group of them and didn’t vaccinate the another and found dramatic differences between the two sides. So to represent that somehow the science has been done is simply false. More importantly the science that has been done is what we like to call “tobacco science”. You take a group of kids who all got vaccines but got a little less mercury and compare them to a group of kids who all got vaccines but a little more mercury and find there’s no difference in autism and then claim that vaccines don’t cause autism. The only appropriate study to do would be to look at a group of children who never got vaccines and a group of children who got all of them, and see if there’s a difference in autism rates and that study has never been done despite many people trying to call for it.

So to represent that the science has been done on this is simply untrue. The vaccine makers are highly effective at PR and which is why I am here talking to you.

Parker: Well JB you obviously feel passionately about this and we can certainly understand that. How do you feel specifically about, when you find out that this particular doctor was when Wakefield was actually deliberately fraudulent in advancing the claim that there was a connection?

JBH: What is interesting is that there are 12 children in the original study in the Lancet, OK? The parents of the 12 children have all written letters, time and again, in support of Andy Wakefield. The study’s conclusion was that the children were all suffering from bowel disease, and Andy went on to mention eight of the parents claimed that the regression took place after the MMR. So the notion that the data is somehow new, what’s new? They didn’t suffer from bowel disease, even though all the parents have represented that they did? People need to look at the details not at the headlines. This an attempt to whitewash, once and for all, the notion that vaccines cause autism. They are not just beating a dead horse, they are beating a horse that never existed in the first place. That’s not what Wakefield’s study said. It’s a seven page page study, it is on the Generation Rescue website. Anybody can read it for themselves and verify what I am saying is true.

Spitzer: JB, again with all sympathy, and as somebody who has been a harsh critic of

JBH: I don’t need any sympathy!

Spitzer: Well, OK but what I am trying to say is

JBH: [talking over] I don’t need any sympathy! I don’t need your sympathy What I need is the facts and for someone to look at the details.

Spitzer: Well what you yourself have said is that what you glean from your anecdotal conversations is hugely compelling to you but unfortunately in terms of the scientific data and the analysis that sort of anecdotal database simply doesn’t establish the causal link what we are looking for in terms of really understanding this and I think that what validates today

JBH: [talking over] Look at the Suny Stonybrook study, look at the university of Pittsburg study

Spitzer: [continuing over JB] this study that we examined today was fraudulent. And I think that’s really where we are.

JBH: [talking over] Look at the Suny Stonybrook study, look at the university of Pittsburg study. You haven’t done all your research. You are reaching false conclusions. Parents do your own work.

[pleasantries to close]

Now lets isolate Handley’s main talking points and decide if they are true or false:

1) You know the original Wakefield study looked at 12 children. All 12 had autism.
Not accurate. According to material from the British Medical Journal three of nine children reported with regressive autism did not have autism diagnosed at all. Only one child clearly had regressive autism.

2) Andy Wakefield also reported that 8 of the parents said that their children regressed after the MMR vaccine.
Not accurate. According to the same source five had documented pre-existing developmental concerns.

3) So the notion that his study ever incriminated MMR as causing autism is false.
Semi-accurate. Although the paper itself may not have mentioned it, the video conference Wakefield gave _about_ the study certainly did:

…you would not get consensus from all members of the group on this, but that is my feeling, that the, the risk of this particular syndrome developing is related to the combined vaccine, the MMR…

4) …we don’t have a single piece of research to understand the potential risk of all those vaccines at once.
Not accurate. Any vaccine in the US has to undergo something called a ‘concomitant use study’. These are to establish that vaccines work OK together. Searching Pubmed for the phrase ‘concomitant vaccine’ returns over 700 results.

5) There is a study out of SUNY Stonybrook within the last six months that compared a group of children who got the entire round of HepB vaccine, and a group of children who didn’t, and found autism was three times more likely in one group
Not accurate. This study is flawed on an number of levels. Firstly, they are comparing kids born as early as 1980 to kids born during “the epidemic”. Anything that happened past 1991 would be an autism risk. Secondly and very worryingly, they pick datasets that have children born before the introduction of the Hep B vaccine. Thirdly, this whole thing is essentially a survey. It’s based on parental recall.

6) There’s a new study out of the University of Pittsburgh that took primates and vaccinated a group of them and didn’t vaccinate the another and found dramatic differences between the two sides.
Not accurate. Again, lots of issues with this study. So many so in fact that Sullivan wrote a devastating takedown of the paper in July last year.

I think that’s all the statements of attempted fact from Handley. All in all it shows that Generation Rescue cannot be trusted to present the most pertinent or up to date information.

2011 – The Last Year For ARI’s DAN! Doctors

2 Jan

As late as just a few months ago, The Autism Research Institute (ARI), promoted their upcoming Fall 2010 Defeat Autism Now! conference in a monthly newsletter. Note the name of the conference:

“Fall 2010 ARI/Defeat Autism Now! Conference”
http://www.ariconference.com/enews/enewsletter_201010.html

Now look at ARI’s promotion of their Spring 2011 conference.

“Spring 2011 ARI Conference
(formerly known as Defeat Autism Now!)”
http://www.ariconference.com/enews/enewsletter_201011.html

Do you see the difference? It’s pretty hard to miss. What about all those practitioners (physicians, nurses, chiropractors, nutritionists, naturopaths, and homeopaths, etc.) who want to participate in the “DAN! Physician Training”, you know, become “DAN! Practitioners”? How does one become a DAN! doctor, if Defeat Autism Now! is a former identity?

A quick look at the ARI Conference website answers that right away.

The Autism Research Institute Conference Formerly known as Defeat Autism Now!

The practitioner seminars are still part of the conference. But there’s something potentially newsworthy here too.

As of 12/31/11, ARI will no longer be maintaining a clinician registry (a.k.a “the DAN list”). No new names will be added to the registry in 2011.

Source

You read that correctly – no new names in 2011, and at the end of this year, it’s over. No more list of DAN! Doctors.

According to ARI’s website, one is best served in finding a “talented clinician” by way a support group – local, or you know, out there on the interwebs.

As recently as 10 years ago it was nearly impossible for parents to find clinicians who approached treating patients with autism from a medical point of view, so ARI started keeping a clinician registry (the “DAN list”). We tried a number of measures to ensure that every clinician on our list provided high-quality care, but we are a small non-profit with limited resources. We have determined that those seeking a talented clinician are best served by connecting with support groups—either locally or online—instead of choosing from a list that cannot be vetted.

Source

I’m not sure what they mean by having tried “a number of measures to ensure that every clinician on our list provided high-quality care”. I understand that there were special “clinician training” sessions at DAN! conferences in the past, but as far as I understood it in the past, becoming a listed DAN! practitioner might have required little more than attend a conference, sign a statement pledging to “conduct their practice in accordance with DAN! philosophy”, and ask to be listed. Although I could be wrong, I find it incredibly difficult to believe that there were in fact any significant measures taken by ARI to ensure the provision of high quality care by clinicians on its list. I seem to recall that Roy Kerry was added to ARI’s list of DAN! practitioners in 2006 after the death of Tariq Nadma in 2005.

ARI’s notes and disclaimers for the remaining year of life for the list of DAN! doctors seem pretty careful:

If someone claims to be “DAN-certified,” they’re overstating; neither ARI nor Defeat Autism Now! has ever had a certification program.

The following are practitioners who have asked to be listed as providing Defeat Autism Now!®- based interventions for patients with autism. Most are physicians, others are licensed health-care professionals in related fields.

ARI has no means of certifying the competence nor quality of practice of any practitioner. The lists are provided as a community service. The Autism Research Institute disclaims and does not endorse or support any individual or entity listed; makes no representations, warranties, guarantees or promises on behalf of or for those listed, and assumes no liability nor responsibility for any service or product provided. ARI does not ‘certify’ practitioners or guarantee competence, skill, knowledge, or experience.

Source

So is that it? Is this really the end of DAN! doctors in less than a year? Isn’t there a D-List celebrity with apparent anti-vaccine leanings , who can save (or may have already saved) the day for all the poor physicians, nurses, chiropractors, nutritionists, naturopaths, and homeopaths who need be available to all those parents who are desperate to recover an “epidemic” of kids from autism, mercury poisoning, or “vaccine-induced” whatever?

Aha! Jenny McCarthy’s Generation Rescue! Where, from the home page, a parent can click on “Find A Doctor” and learn about the NGMD’s.

JMGR

What’s an NGMD according to Jenny McCarthy’s Generation Rescue?

Answer: According to Jenny McCarthy’s Generation Rescue website, an NGMD is a “New Generation Medical Doctor”, and “These clinicians share Generation Rescue’s ideologies, practices, and philosophies of treating the underlying medical issues of individuals with autism.”

Source

I think this is potentially an interesting development, because in the past, a parent brand-new to an autism diagnosis might have assumed scientific credibility from a movement’s (Defeat Autism Now!) list of practitioners associated with a name like “Autism Research Institute”. If nothing, ARI is a scientific sounding name. I don’t think that’s as likely to be the case for the “NGMD’s”, who could be seen by many as simply associated with a fringe anti-vaccine group promoted by Jenny McCarthy.

What do you think?

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.

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