Tag Archives: Andrew Wakefield

D.A.I.R. Foundation 2013 tax form, about $100k in revenue, $20k in program expenses

5 Mar

A few years back Andrew Wakefield decided to sue the BMJ and Brian Deer.  This followed a series of articles and public statements that Mr. Wakefield’s work was an “elaborate fraud” and Mr. Wakefield himself was a fraud.   Lawsuits involve attorneys and attorneys cost money, so a few efforts arose to help Mr. Wakefield pay for these costs.  I believe the first was the “Dr. Wakefield Justice Fund”.  This didn’t come across as a major effort, the twitter account made three tweets, the website appears to be down (here’s an archived version), and it doesn’t appear to have made charity status.  Another effort that came out was the Academic Integrity fund.  Again, the website seems to be down, but again there’s the archive.  In many ways it’s too bad that site didn’t continue as it because a place for Mr. Wakefield to place essays.  And his writing, while tedious, produced interesting insights into his thoughts. For example:

Obama must meet the autism tragedy head on and deal with the proximate cause of the epidemic – unsafe and untested vaccination practices.

This from a man whose supporters claim never says that vaccines cause autism.

And we can also read the approach that would later prove fatal for Alex Spourdalakis: autism must be considered a medical, especially gastrointestinal, condition and that psychiatric medications to be avoided and that are behind mass murderers.

Tragically, predictably, there will be more events like at Sandy Hook Elementary. The vast number of individuals with developmental disorders presages such events. This is not because of their diagnosis, per se, but rather I would suggest, because they may be at increased risk for adverse reactions (due to pre-existing conditions) and are being inappropriately medicated with drugs for which violence is a recognized adverse reaction. These drugs are being prescribed by a “mainstream”

Not all the fundraising efforts failed.  We also saw the rise of a group calling itself the “Defending Academic Integrity and Research” or D.A.I.R. Foundation.  D.A.I.R. states under “what we do”:

Justice is accessible only to those who can afford it. D.A.I.R. Foundation provides legal aid, coordinated public relations support, and educational materials that support the work of our sponsored applicants.

Reading their site, one applies for support and D.A.I.R. provides financial support, PR and other help.

D.A.I.R. Foundation has an open request for proposals from researchers, physicians, scientists, and academic policy drivers who have come under attack and are interested in applying for legal aid. Please Contact Us and note in the subject line “Applicant Inquiry”. Applicants follow an approval review process. Applicants who are accepted will be expected to agree to terms and conditions of the legal aid process to include partnership in strategy that assures success and can be leveraged in future cases, proceeds to D.A.I.R. Foundation following legal compensation, and development of educational and public relations materials. We also assist in reputation management

I emailed them asking for a copy of their “terms and conditions” but they did not reply.  I find it interesting that people are expected to work with D.A.I.R in developing educational an public relations materials, and apparently provide a share of the proceeds of any legal settlements they achieve.

They hold fundraisers, and it appears that Andrew Wakefield is a featured speaker at these events.  The event linked on their website was not inexpensive, but also appears to have left a large number of seats unsold. (click to enlarge)

DAIR fundraiser

Of course this leaves us wondering, how much money did D.A.I.R. bring in and how did they use it?  Well, here’s the D.A.I.R. Foundation 2013 form 990.

From this we learn that they brought in $104,488.  Of that $20,859 was spent on a grant (I assume to Andrew Wakefield).  But that is less than 1/3 of their expenses. (click to enlarge)

DAIR 1

They spent $14,889 on salary for Dawn Loughborough (the executive director). They spent $15,256 on catering and $7,383 on travel, plus other expenses. (click to enlarge)

DAIR 2

Or, to put it simply: they took in about $100k.  Of this about $20k went to actual program expenses, over $45k went to salary and other expenses and about $37k was left in the bank.

If you dontated, about $0.20 of each dollar went to program expenses (presumably Mr. Wakefield’s expenses) about $0.45 went to overhead and about $0.35 may be used for program expenses at a later time.

Should this grant have gone to Mr. Wakefield, I don’t see that covering a large fraction of his expenses for his failed lawsuit.  Perhaps I’m wrong, but the effort involved multiple lawyers and many, many pages of documents.

By Matt Carey

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Is Andrew Wakefield’s Strategic Autism Initiative failing?

3 Mar

When Andrew Wakefield left Thoughtful House he set up a charity, the Strategic Autism Initiative.  Interestingly even now, years after it was founded, it appears to have no website or Facebook page.  What it does have is tax forms because every charity must make those public.   Last year when I looked these tax forms, a few points became apparent.  Most of the money the SAI had taken in (58%) had gone to salaries, with the lion’s share of that going to Mr. Wakefield himself.  In 2012 more money was spent on salaries that was taken in.  SAI appears to have two employees, Andrew Wakefield and Terri Arranga.  Here are the contributions to the SAI, Mr. Wakefield’s salary and Ms. Arranga’s salary for the years 2010, 2011, 2012.

SAI contributions and salaries

And here are the tax forms:

Strategic Autism Initiative 2010 tax form
Strategic Autism Initiative 2011 tax form
Strategic Autism Initiative 2012 tax form

It is worth noting that the SAI was formed towards the end of 2010, hence the low salaries for that year.

Donations were down dramatically from 2011 to 2012 leaving one to wonder: what would 2013 bring?  Did the downward trend continue? Well, here’s the 2013 tax form:

Strategic Autism Initiative 2013 tax form.

Gross receipts: $50,498, down from $113,501 for tax year 2012.  A drop of over 50%.  The SAI ran a deficit of $97,514, nearly twice what they took in.  Mr. Wakefield took no salary, Teri Arranga only $5,000.  The SAI only had $21,396 in assets at the end of the year.

In short: the SAI appears to be failing. OK, in terms of benefit to the autism communities, the SAI has continually failed.

SAI 2013 form 990

Below are the “program service accomplishments” for the SAI in 2012 and 2013.  Program services are the heart of what a charity is doing.  Well, a standard charity.  That said, ignore the money amounts listed and tell me if you can see any difference in the text.  It looks to me like they copy and pasted the accomplishments from 2012 into 2013.  If I wrote the same accomplishments one year to the next, my management would likely let me go for accomplishing nothing in a year.

SAI 2012 program services SAI 2013 program services

This tax form–the most recent one available–is from 2013.  We will have to wait for the 2014 form but if this trend continued, the SAI is either failing or has failed as an organization.

By Matt Carey

National Geographic, “The War on Science”, includes discussion of vaccines and autism

19 Feb

I just got my copy of the March 2015 issue of National Geographic a couple of days ago. Imagine my reaction when I saw this cover (click to enlarge):

natgeo

In case you are having trouble imagining my reaction–it includes a big THANK YOU to National Geographic.

Yes, they put “vaccinations can lead to autism” up there with “evolution never happened” and “the moon landing was fake”.

This paragraph includes references to Jenny McCarthy (anti-vaccine activist and actress Jenny McCarthy) and Andrew Wakefield’s Lancet article.

Doubting science also has consequences. The people who believe vaccines cause autism—often well educated and affluent, by the way—are undermining “herd immunity” to such diseases as whooping cough and measles. The anti-vaccine movement has been going strong since the prestigious British medical journal the Lancet published a study in 1998 linking a common vaccine to autism. The journal later retracted the study, which was thoroughly discredited. But the notion of a vaccine-autism connection has been endorsed by celebrities and reinforced through the usual Internet filters. (Anti-vaccine activist and actress Jenny McCarthy famously said on the Oprah Winfrey Show, “The University of Google is where I got my degree from.”)


By Matt Carey

Andrew Wakefield’s CDC Whistleblower documentary trailer. Words can not do this justice.

20 Nov

Andrew Wakefield, the British former academic surgeon who fueled the MMR scare, has turned to film making as his career.  Someone chose Mr. Wakefield to manage the publicity for what they termed the “CDC Whistleblower” incident. to recap that: a William Thompson from the CDC had the extreme bad judgment to approach Brian Hooker with concerns about an old MMR/autism study.  Mr. Hooker is well known for his antagonistic stance on vaccines and his bad science attempting to link vaccines and autism.  Mr. Hooker published a (now retracted) study based on the information given to him by Mr. Thompson at CDC.  To publicize this “CDC Whistleblower” incident, Mr. Wakefield came out with probably the most over-the-top bad video I’ve ever seen.   It’s basically the Plan 9 From Outer Space of mini documentaries, complete with Mr. Wakefield’s voice over claiming that the CDC are worse that Hitler, Pol Pot and Stalin.  Those dictators, you see, were at least sincere in Mr. Wakefield’s view.

Well it seems Mr. Wakefield wants to expand the “CDC Whistleblower” story to a full documentary.  He has an indigogo campaign to raise funds. As of now, it has collected $2,213 of his $230,000 goal.

And now he has a trailer.  It is seriously worth a look.  And before you read my own commentary on this one.  Here, go ahead:

Thankfully it is not as long at the Hitler/Pol Pot/Stalin video so I could manage to watch it again.  Because on one view I just had to say–really? Is this for real?

We start out with a shadowy figure. Presumably an actor playing the role of the whistleblower (although, physically he looks more like Poul Thorsen than Mr. Thompson).

Feast-shadow figure

Interspersed with video of autistic kids in severe distress, we get images of police in riot gear.  Because, that’s what one does in a documentary, splice in footage that has nothing to do with the story, right?feast-riot gear

And, lest we forget, a helicopter.  Black.  Has to be black.  OK, it looks like only the bottom is black, but as that quick clip went by all I could think was “really?  A black helicopter? ”

feast black helicopter

And in case we had any remaining thoughts that this was a documentary, enter the image of a house as seen through a sniper scope.  As the sniper scope zooms in we see that the target is an African American in a wheel chair.

feast sniper

Perhaps this is some sort of allusion to Mr. Wakefield’s first video, the Hitler/Pol Pot/Stalin video where he claimed that the CDC was engaging in a new Tuskegee experiment.   If so, why is the image of an African American female? I ask because the alleged controversy Mr. Wakefield is trying to highlight was about African American males.

The video ends with footage of parents telling us that vaccines cause autism and an actor (presumably representing the “whistleblower”) walking up some stairs.  Finally, Congressman Darrell Issa is shown banging a gavel at a congressional hearing.  From the start of these events, Mr. Wakefield and Mr. Hooker and their team have been calling for a congressional hearing.  I do hope they sent this video (and the Hitler/Pol Pot/Stalin video) to Mr. Issa’s office.  I have a feeling that since the time that Mr. Issa accepted $40,000 in donations from people seeking a congressional hearing, he’s learned a great deal and this video will further his education.

The sad part of this is the exploitative use of autistic children seen under severe distress.  This exploitation does nothing to serve the very real needs of our community.  Also seen towards the end are images of Avonte Oquendo, who went missing from his school and was found dead months later.  Again, exploitation which does nothing to serve our communities.  Mr. Wakefield is grabbing whatever film clips he can whether they are related or not to his purported story.  This is the same trick he used with a previous trailer he produced, where he spliced video from the Judge Rotenberg Center into a completely different story.

If Mr. Wakefield weren’t doing so much damage to my community, his videos would be laughably bad.  I’m not laughing.

By Matt Carey

Andrew Wakefield: paid $316k to administer $80k in grants by the Strategic Autism Inititiative

7 Nov

When Andrew Wakefield left Thoughtful House (which has since changed it’s name and removed all mention of him from their website), he announced a new effort: the Strategic Autism Initiative. He was going to manage research into the causes of autism. That was in 2010. Now he bills himself as a video director of the Autism Media Channel. Makes one wonder how well that Strategic Autism Initiative thing worked out.

Well, we can’t tell for sure as tax forms are only available through 2012. But the trends tell us that perhaps, just perhaps, the Strategic Autism Initiative lost steam in their fundraising.  Donations are way down.  And a lot of money has gone into salaries and very little into actual programs.

Strategic Autism Initiative 2010 tax form
Strategic Autism Initiative 2011 tax form
Strategic Autism Initiative 2012 tax form

Let’s do a little summarizing. Let’s look at trends for the money they take in (contributions) and the money that they’ve put out in salaries. The Strategic Autism Initiative pays Andrew Wakefield and Terry Arranga.

SAI contributions and salaries

OK, you gotta hand it to Andrew Wakefield–he pulled in $623k in 3 years, basically on his name and reputation. And, he took $316k of that money, about 50%. In total, salaries accounted for 58% of what the SAI took in. The first year of the SAI (2010) was a short year, hence the low salary. Mr. Wakefield’s salary appears to be based on $270,000/year full time. Officially he was working 30hours/week in 2010 and 2011. 15 hours/week in 2012.

Notice that the contributions were way down in 2012. Still a sizable $113k, but down from the previous years.

How does the salary outlay compare to the intake over the years? Well, it was relatively low the first year (the short year) and climbed to 80% in 2011 and 100% in 2012.

Salary Fraction

Not what one would call sustainable. Well, I guess if all one does is put money into salaries, that’s sustainable. Not exactly what a charity is supposed to be, though. Which begs the question, how much money did they have on hand at the end of each year?

Assets

Yep, pay out most of your money in salary and watch your assets go down. Also gives a partial explanation for why Mr. Wakefield is only listed as working 15 hours a week in 2012–there wasn’t the money to pay him more. The SAI would be about $70k in debt had they paid him for 30 hours/week.

In 2010, they paid out $20,260 in a grant to perform a UK Somali study.

SAI 2010 grants

In 2011 they paid out a $25k grant to Generation Rescue for a “vax/unvax study”

SAI 2011 grants

In 2012 they paid out $35k in grants. One to Mr. Wakefield’s former Thoughtful House colleague Arthur Krigsman and another to the Geiers for a study using the Florida medical database.

SAI 2012 grants

So, let’s consider this. In three years, Mr. Wakefield managed to give out 4 grants. Total of about $80k in grants. And for that effort he was paid $316k. What’s the supposed goal of the Strategic Autism Initiative?

SAI mission

“…to promote research in areas of autism and neurological disorders…”

Right. Promote research. About 13% of their budget went to promoting research. And that’s before we even consider the quality of that research.

Some bright people believe Andrew Wakefield. Some wealthy people believe Andrew Wakefield. Why, I don’t know. But even those who believe in what he says may someday question whether getting $0.13 on the dollar to the cause is worth keeping Andrew Wakefield employed.


By Matt Carey

A look at the analysis plan for DeStefano’s MMR study: no evidence of fraud

16 Oct

Andrew Wakefield and Brian Hooker have been making claims that the CDC are involved in misconduct in autism research. In case you haven’t followed the story, it basically goes like this:

1) the CDC planned on a study of MMR and autism using the MADDSP data.

2) That the CDC created a research plan.

3) That the CDC found results they didn’t want to report: an calculated odds ratio for African American boys. So the CDC team allegedly deviated from that plan and didn’t report that result.

4) That the CDC introduced a new analysis after the plan: that they would include birth certificate data.  While the CDC rationale for this new analysis was to provide more data (confounding variables) for the analysis, the allegedly real reason was to dilute the sample set and make statistically significant results disappear.

Here’s a paragraph from one of the press releases about the Hooker study:

According to Dr. Thompson’s statement, “Decisions were made regarding which findings to report after the data was collected.” Thompson’s conversations with Hooker confirmed that it was only after the CDC study coauthors observed results indicating a statistical association between MMR timing and autism among African-Americans boys, that they introduced the Georgia birth certificate criterion as a requirement for participation in the study. This had the effect of reducing the sample size by 41% and eliminating the statistical significance of the finding, which Hooker calls “a direct deviation from the agreed upon final study protocol – a serious violation.”

Or so goes the story. But as is often the case with Andrew Wakefield and Brian Hooker, the facts don’t match the claims.

In a recent video, Mr. Wakefield shows us the research plan the CDC had drafted.  One red flag with Mr. Wakefield’s approach so far has been how he tries to tightly manage the flow of information.  He has not shared the analysis plan in total and only now has he provided us with a couple screenshots.  Begs the question: what are they hiding?

Here’s one screenshot from that video. This one is where he gets the idea that the plan was to report race for the entire sample.

draft analysis plan screenshot 2

Here’s the full text, in case that’s difficult to read:

Statistical Analysis

We will use conditional logistic regression stratified by matched sets to estimate the odds ratios for association between age at MMR vaccination and autism. In the main analyses, we will include all autism cases.

Potential confounding variables will be evaluated individually for their association with the autism case definition. Those with an odds ratio p-value < 0.20 will be included as covariates in a conditional logistic regression model to estimate adjusted odds ratios for the association between age at vaccination and autism. The only variable available to be assessed as a potential confounder using the entire sample is child’s race. For the children born in Georgia for whom we have birth certificate data, several sub-analyses will be carried out similar to the main analyses to assess the effect of several other potential confounding variables. A recent case control study (CDC, 2001) carried out with a subset of the autism cases from this study found that age matched cases and controls differed on several important background factors including maternal age, maternal education, birth type, and parity. The variables that will be assessed as potential confounders in this study will be birth weight, APGAR scores, gestational age, birth type, parity, maternal age, maternal race/ethnicity, and maternal education. (See Table 2 for how variables will be categorized.)

There are two interesting points in the above.  First, the sentence Mr. Wakefield highlights doesn’t say what he claims.  The only variable available to be assessed as a potential confounder using the entire sample is child’s race. The plan doesn’t say that they will test and report race.  Consider the context: this is a section of the plan called “statistical analysis”. Put in context with the entire paragraph, this sentence is clear: the full dataset is limited because it only has one variable available.

The CDC didn’t deviate from the plan when they didn’t report on race for the total sample because that was never in the plan.  If you want more evidence of this, the end of the paragraph says “See Table 2 for how variables will be categorized”.  Table 2 is titled “Descriptive Statistics for Children Born in Georgia with Birth Certificate Records”.  The variables will be categorized in the birth certificate sample.

The second interesting point from the paragraph Mr. Wakefield has shown us is this: the CDC plan included a birth certificate sample.

Here’s a screenshot of the analysis plan from that new video, showing the front page of the analysis plan:

draft analysis plan screenshot

Shown with this voice over by Mr. Wakefield (while the screenshot above is shown going up in flames…very dramatic)

“Over the ensuing months, after the data after the data had been collected and analyzed, and strictly forbidden in the proper conduct of science, the group abandoned the approved analysis plan, introducing a revised analysis plan to help them deal with their problem.”

So, in case you were thinking, “that’s an analysis plan, how do we know it’s the analysis plan”, well, you have Mr. Wakefield’s word on it.  This is the “approved analysis plan” that the CDC allegedly had to revise.

What interests me about this as that’s the same plan that I have and was preparing to write about.  It’s nice now to be able to be able to say that this is, indeed, the same document that Mr. Wakefield and Mr. Hooker are working with.

We’ve already seen two big mistakes by the Wakefield/Hooker team: first that the analysis plan doesn’t include a call to report on race separately in the total sample (the group without the birth certificates), second that the CDC “approved analysis plan” included analysis of a subset with birth certificate data.

So, what were the objectives of the study as in the plan?

Objectives:
We did not have information regarding onset of symptoms for most cases in this study and this limited our ability to do certain types of analyses such as case series analyses. In addition, a totally unexposed group (i.e., never received the MMR vaccine or other measles containing vaccine) was not available since measles, mumps, and rubella vaccination are required for school attendance in Georgia. The following objectives are considered the primary objectives for this study.
1) To determine if case children were more likely than their matched controls to have been vaccinated with MMR before 36 months of age. DSM-IV criteria for autism require that onset of symptoms occur before 36 months of age. Therefore, the 36-month cut-off is one that by definition can be used to classify a definitely “unexposed” group.
2) To determine whether there was a difference between cases and controls in the proportion of children exposed to their first dose of MMR vaccine before 18 months of age. This objective is based on the research that suggests the timing of first parental concern for the development of autism appears around 18 months of age (Taylor et al, 1999). In addition, Cathy Lord has reported that the range of first parental concern for regression was between 12 and 23 months of age with a mode of 19-21 months.
3) To determine whether the age distribution for receipt of the MMR vaccine differs between cases and controls.

They showed the data for the 36 and 18 month cutoffs.  Age distribution was covered in Table 2.

Analysis of Autism subgroups

The IOM (2001) specifically recommended additional research regarding autism subgroups and MMR. We will examine several subtypes of autism in this study. Data from the Metropolitan Atlanta Congenital Defects Program will be included in the sub-analyses to identify particular sub-groups. The following sub-group analyses will be conducted:

1) Analyses excluding cases with an established cause for autism or a co-occurring condition suggesting an early prenatal etiology (e.g., tuberous sclerosis, fragile X, or other congenital/chromosomal anomalies.)

We propose to conduct a case-control sub-analysis looking at cases without an established or presumptive cause for autism, such as tuberous sclerosis, fragile X, and other congenital/chromosomal anomalies. The purpose of doing this analysis is to create a more homogeneous case group that may be more likely to be impacted by the timing of the MMR vaccine. The objectives from the primary analyses will be replicated in this sub-analysis.

2) Analyses of Isolated versus Non-isolated Autism.

Isolated autism cases are cases with no other co-morbid developmental disability while non-isolated cases do have a co-morbid developmental disability. Previous research suggests that the majority of non-isolated cases have a co-existing developmental disability of mental retardation (CDC, 2001). Both isolated and non-isolated cases will be compared separately to controls. The objectives from the primary analyses will be replicated in this sub-analysis.

3) Analyses examining Gender Effects

Males are at substantially higher risk for autism and may be more vulnerable to the exposure associated with the MMR vaccine. We will analyze males and females separately and replicate the main objectives of the primary analyses as well as examine the potential confounders available from Georgia birth certificates.

4) Analyses excluding autism cases with known onset prior to 1 year of age.

For a subset of autism cases, we were able to identify the timing of parental concern. This sub-analysis will exclude all cases excluded with an established or presumptive cause for autism (e.g., tuberous sclerosis, fragile X, and other congenital/chromosomal anomalies.) and children for whom we have been able to identify first parental concern prior to 12 months of age.

Just in case anyone reading this is one of the few that has been following Mr. Wakefield’s video releases: in a new video Mr. Wakefield is trying to claim that the isolated autism subanalysis was not done.  Except that it was.  They made a minor change to autism without MR, which gave essentially the same result that Mr. Wakefield claims was hidden.

Destefano_table_4 highlighted

Autism without MR has an odds ratio of 2.45 with a 95% confidence interval of 1.20 to 5.00.  I’ll write about this new video soon as there’s much sleight of hand going on, but Mr. Wakefield is claiming that a result of odd ratio = 2.48 with confidence interval of 1.16 to 5.31 was not reported.  Besides ignoring the fact that the data were reported by the CDC, Mr. Wakefield ignores the fact that these are raw-data results.  Total sample, unadjusted analysis.  In the adjusted analysis the result does not suggest an association.

But, getting back to the main point: the claims of fraud are just not founded on fact.  The two main claims of “fraud” are just wrong.  The analysis plan did not state that they would do a subanalysis by race for the total sample.  The addition of the birth certificate data is in the plan, not in some sort of revision.  And Mr. Wakefield and Mr. Hooker knew this.

I am reminded of a quote from an ABC News article recently

“There are always going to be those people at the edges of science who want to shout because they don’t want to believe what the data are showing,” said Dr. Margaret Moon, a pediatrician and bioethicist at Johns Hopkins Berman Institute of Bioethics. She said she thought the study author “manipulated the data and manipulated the media in a very savvy and sophisticated way.”

“It’s not good. It’s not fair. It’s not honest. But it’s savvy,” Moon said.

By Matt Carey

Retracted: Measles-mumps-rubella vaccination timing and autism among young african american boys: a reanalysis of CDC data

5 Oct

About two months ago an autism parent published a study: a “reanalysis” of a CDC dataset. That study: Measles-mumps-rubella vaccination timing and autism among young african american boys: a reanalysis of CDC data.

Here’s a screenshot of how the article looks online today (click to enlarge):

BadStudyRetracted

The retraction reads:

The Editor and Publisher regretfully retract the article [1] as there were undeclared competing interests on the part of the author which compromised the peer review process. Furthermore, post-publication peer review raised concerns about the validity of the methods and statistical analysis, therefore the Editors no longer have confidence in the soundness of the findings. We apologise to all affected parties for the inconvenience caused.

Previously, the editors had an “expression of concern” about the article:

The Publisher of this article [1] has serious concerns about the validity of its conclusions because of possible undeclared competing interests of the author and peer reviewers. The matter is undergoing investigation. In the meantime, readers are advised to treat the reported conclusions of this study with caution.

Further action will be taken, if appropriate, once our investigation is complete.

Comment on

Brian Hooker. Measles-mumps-rubella vaccination timing and autism among young African American boys: a reanalysis of CDC data. Translational Neurodegeneration 2014, 3:16.

An excellent discussion of this study and the questions raised by it can be found at MMR, the CDC and Brian Hooker: A Guide for Parents and the Media


By Matt Carey