Search results for 'vaxxed'

VAXXED pulled in over $1.3M in donations, and most of it went to Wakefield and Tommey’s company

19 Nov

A few years ago Andrew Wakefield (one of Time Magazine’s Great Science Frauds) headed a team promoting a faux documentary called “Vaxxed”. I wrote about this film a great deal at the time, but suffice it to say it exemplified much of what is wrong with the way the anti-vaccine community uses and abuses the autism community.

If memory serves, VAXXED concluded with a long list of sponsors. So they apparently had a fair amount of money to work with to produce the film. The film was a product of the Autism Media Channel, which is a limited liability corporation (LLC) owned by Polly Tommey and Andrew Wakefield, based on tax records. At the same time, Vaxxed was associated with a charity: AMC Foundation. Said foundation is run by Andrew Wakefield with Polly Tommey and Brian Burrowes also listed as directors (at least on past tax forms).

Vaxxed came out in 2016, and nonprofit tax forms for 2016 are now public. Here are the tax forms for 2015 and 2016:

Here is the 2015 tax form.

And here is the 2016 (more interesting) tax form.

There are some very interesting details, but let’s focus on a few. Starting with in 2016 AMC Foundation took in $1,325,098 in contributions and grants. $1.3M. (click to enlarge)

$1.3M. Where did it go? Well, about $207K went to “other expenses”. Of that $50K was travel (they had a bus touring around promoting the movie, but they also had a gofundme campaign to pay for the bus if I recall correctly). Another ~$80k into “other” which doesn’t seem to be itemized. Click to enlarge.

And, then there’s the $1M that was given to the business arm of the Autism Media Channel. Click to enlarge.

As noted above, the Autism Media Channel LLC is owned by Andrew Wakefield and Polly Tommey. So that $1M is roughly $500,000.00 each. Of course, the business has to pay other expenses. For example, one assumes that Del Bigtree was not riding along the tour for free. Also, we don’t know how much of the original expenses for producing VAXXED may have needed to be paid off. Of course, had Ms. Tommey and Mr. Wakefield chosen to pay themselves through the charity arm of VAXXED, we would know the amount. That’s called transparency. Given how large this sum is, transparency would seem to this observer to be a necessity. Also, given how much the VAXXED team complains about lack of transparency, this action strikes me as completely hypocritical. click to enlarge.

Perhaps keener eyes than mine can find where any of the money went to, say, help any of the families who Wakefield and Tommey were so eager to include in videos. Or to perform research on autism and/or vaccines. Or anything that, well, would seem charitable. I guess some would think supporting the next film–by the profit generating business–is a charitable act. By shifting the money to their LLC business, we can’t see how much was paid directly to Mr. Wakefield and Ms. Tommey. Which, in itself, is a practice that bothers me. A prime reason to donate to a charity (rather than, say, offer support for a film directly) is to gain transparency. Note that in 2015, the charity did list salary for Ms. Tommey as well as expense for “FILM PRODUCER. PROGRAM EXPENSES”, which one might reasonably consider as a payment to Del Bigrtree (the producer of Vaxxed). So they apparently chose to stop listing salary/payments in 2016.

Recall that in the past Mr. Wakefield was paid $270K/year at Thoughtful House and, after that job ended, tax records for his charities set his salary at the same annual rate.

I profess to be no expert on taxes or the structure of charitable institutions. In my opinion this transfer of funds is at the very least a questionable practice. Money was collected through a charity–giving donors a tax advantages–and mostly diverted to a business run by the same people as heading the charity. Aside from the fact that I would never willingly let Andrew Wakefield or Polly Tommey get a dime of my money, I personally would not be pleased if money I was donating was handled in this way. But Mr. Wakefield’s supporters have been looking the other way and accepting his excuses for over 20 years. I doubt this will bother many of them at all. If any.


By Matt Carey

Advertisements

Why are Robert Kennedy Jr. and Wakefield’s Vaxxed team allying with someone who spreads holocaust denialism?

31 Mar

Simple answer: because she’s anti vaccine.

But I’m sure readers would like a bit more detail than that. Today Robert Kennedy Jr. spoke at an event for vaccine antagonistic activists. On the list of speakers: Sherrie Saunders. Ms. Saunders has been part of Andrew Wakefield’s “Vaxxed” team for some time.

Here are some posts from Ms. Saunders’ facebook feed. She’s “educating” her readers with writings from a “fb historian”. I will post screenshots for the most part as this is disgusting material.

Here’s one post. And a screenshot of the start of the post:

That post includes a paragraph from the “Protocols of Zion”. Here’s the start of the Wikipedia page on the Protocols of Zion:

The Protocols of the Elders of Zion (Russian: Протоколы сионских мудрецов) or The Protocols of the Meetings of the Learned Elders of Zion is an antisemitic fabricated text purporting to describe a Jewish plan for global domination. The forgery was first published in Russia in 1903, translated into multiple languages, and disseminated internationally in the early part of the 20th century. According to the claims made by some of its publishers, the Protocols are the minutes of a late 19th-century meeting where Jewish leaders discussed their goal of global Jewish hegemony by subverting the morals of Gentiles, and by controlling the press and the world’s economies.

Again, the so-called “Protocols” are a racist fraud.

That same post includes a picture of Hitler with text entitled “Hitler knew who the real jews were”. I will not copy it to this site.

Here is a screenshot of another of her posts from that day (link). Again, “via Fb historian”. It’s more of the same. One of the pictures with that post is again of Hitler, with the caption: “They told you we were the monsters. We were the last warriors who fought the satanic jewish banking cartel that rules you today.”

Another of Ms. Saunders’ pages from that day is entitled by her “AGENDA OF THE ZIONIST MOVEMENT” (link).

So, Robert Kennedy, why are you associating with this person?

So, Andrew Wakefield, why are you associating with this person?

So, Polly Tommey, why are you associating with this person?

So, Brian Hooker, why are you associating with this person?

So, Barbara Loe Fisher, why are you associating with this person?

Surely if the information she has is valid, you can find someone to present it who doesn’t share such offensive lies as these.

By Matt Carey

A look back at the so called “CDC Whistleblower” story and how Vaxxed is misleading

10 Feb

A short while ago I was asked to speak on a conference call for Voices for Vaccines. The topic was the events that are behind (and misrepresented in) the movie Vaxxed. With Wakefield trying to bring his movie to Europe, and the fact that President Trump spoke with Robert Kennedy on vaccines and autism, I though an analysis might be worthwhile now. So, here’s an edited version of that talk.

I have written a great deal about these topics. Specifically the topics of Vaxxed and William Thompson. I will try to embed those links where relevant below. Until then, they are at the bottom of this article (in no particular order).

Let me introduce myself: My name is Matt Carey. I hold a Ph.D. in physics and have been an active researcher for 30 years. More importantly–I am the parent of autistic child. I take the question of whether vaccines cause autism very seriously.

When my kid was diagnosed I did what many do: I went online to find information. I found claim after claim that autism is caused by vaccines. As a researcher, I pulled papers and dove into the question. I also dove into online discussions, reviewing published studies and news. I’m still doing this. Even though the answer has come back time and again, there isn’t evidence that vaccines cause autism, I keep checking on many of the claims that come up.

So when the story that became the movie “vaxxed” first came out, I took it seriously and I started investigating the claims. It’s too important not too. I’ve followed the story since.

Having done this, let me start by avoiding the trap that the “vaxxed” team has set out. They have worked hard by limiting access to information to not only get their conclusion out, but to control how we discuss the topic.

Here’s how they describe their film:

An investigation into fraud on the MMR autism study at the CDC as revealed by Senior Scientist & Whistleblower Dr. William Thompson.

No. Just no.

Sure, fraud may be what they made a film about—but that isn’t the topic that is important. The important question, the one real advocates would focus upon, is whether they unearthed proof that vaccines cause autism.

The answer is simple and clear: NO.

Before I discuss my reasoning and the results that the Vaxxed team are misrepresenting, here is one of the few public statements made by William Thompson (the so-called “CDC-whistleblower” himself):

I want to be absolutely clear that I believe vaccines have saved and continue to save countless lives. I would never suggest that any parent avoid vaccinating children of any race. Vaccines prevent serious diseases, and the risks associated with their administration are vastly outweighed by their individual and societal benefits.

These are not the words of someone who thinks that vaccines have been shown to cause autism. They just aren’t. So, don’t take my word for it, or my analysis below. There isn’t proof of vaccine causation in this story.

If you want a very direct quote from Dr. Thompson on this point, here is another statement you won’t find quoted by the Vaxxed team:

The fact that we found a strong statistically significant finding among black males does not mean that there was a true association between the MMR vaccine and autism-like features in this subpopulation.

Put in simple language–no matter how you look at the data, it doesn’t show that vaccines cause autism.

What he’s saying there isn’t even that surprising. The type of study he’s talking about can’t—it just can’t—show causality. But that fact, and the fact that Thompson has made this statement, doesn’t stop the Vaxxed team from claiming the opposite.

These statements aren’t in Vaxxed. They aren’t discussed in the public appearances I’ve seen by those promoting the movie Vaxxed. They are in a statement that Thompson provided to Representative Posey. Mr. Posey read part of that statement into the public record–but not the very important parts quoted above.

Vaxxed is often billed as “the movie they don’t want you to see”. It’s pure hypocrisy given that there are important facts the Vaxxed team apparently doesn’t want you to know.

The vaxxed team apparently doesn’t want us talking about the fact that they haven’t unearthed evidence that vaccines cause autism. They seem to want us to just assume that they have evidence of causation and keep us talking about supposed fraud.

The fraud discussion is a diversion. As is much of the film. Again, the question that should be discussed is whether vaccines cause autism. And even their source, their so-called “whistleblower” isn’t saying there is a causal link shown.

The film Vaxxed and the activities by Andrew Wakefield’s team before and since has been from what I have seen largely about controlling the information so they can try to control the conversation. Rather than talking about the important questions, they want us to skip over that, skip over whether vaccines cause autism, and instead talk about parents’ stories, and claims of fraud.

I think it is important in discussions about these events to try to focus on the important topics and not let them get buried. And that’s why I bring the above points up first. That’s why I bring up those statements by Dr. Thompson. Statements which, as I noted, are not in Vaxxed. They do not get brought up by Wakefield’s team. And people should be questioning why such important statements are left out. From the beginning, they haven’t released documents and only given us partial information.

At this point, it’s worth posing the question–Why are we even asking again whether vaccines cause autism? To answer that, we need to now get into the narrative of the so-called “CDC-Whistleblower”.

This story revolves around a CDC researcher named William Thompson. Dr. Thompson was involved with a number of vaccine studies, but the story here centers on an MMR/autism study that was started in 2001. For this study, the CDC team chose to analyze data from an existing CDC autism study on Atlanta school kids—basically the prototype for the CDC prevalence estimates we see today. For that study the researchers added information on vaccines and other factors. The study was published in 2004 with Frank DeStefano as the lead author.

Dr. Thompson felt there were problems with the way the CDC handled this study and, years later, he reached out to Brian Hooker. Mr. Hooker is an autism parent, and a very vocal proponent of the failed idea that autism is a vaccine-induced epidemic. Thompson exchanged phone calls, emails and a number of CDC documents from the time of the study was being performed with Mr. Hooker.

Thompson raised two main concerns about the MMR study, and these are an important part of Vaxxed. The first concern was that there was an association found between the MMR vaccine and autism for African American boys. The second was that in a group the CDC termed “isolated autism”, that is to say autism with no other disabilities, there was an association with MMR and this was not correctly reported.

These points are important to Vaxxed, but not in the way a responsible advocate or documentary film maker would. Wakefield apparently wants us to believe that these are direct evidence that vaccines cause autism and they were hidden. The facts tell a different story.

Let’s talk about “isolated autism” first. In his written statement to Congressman Posey, Thompson stated:

In addition to significant effects for black males, we also found significant effects for “isolated autism cases” and for the threshold of 24 months of age. If we had reported the 24 month effects, our justification for ignoring the 36 month significant effects would not have been supported.In the discussion section of the final published manuscript, we took the position that service seeking was the reason we found a statistically significant effect at 36 months.

That’s sort of a long quote for this sort of talk, but I wanted to use his exact words before giving my own summary: Thompson basically said that the CDC team saw an association between autism and MMR for kids vaccinated by 36 months—and he acknowledges that they did report this. I’ll repeat that–they did report this. It wasn’t hidden. The CDC team attributed this to families who vaccinated their disabled children late. They needed vaccinations to be up to date for early start or special ed programs at age 3.

Thompson also claims that they saw an association between MMR and the isolated autism group vaccinated before 24 months, and that this means that the interpretation is wrong: the association can’t be driven by services seeking behavior near age 3.

The problem with that claim is that the CDC team did NOT find an association at 24 months. This is directly counter to what Thompson said and what Vaxxed The authors presented the 24 month data in the paper and there is no association there and—more importantly—there is no association at 24 months in the preliminary results Thompson provided in the documents recorded at the time of the study. Documents I made public and the Vaxxed team did not, even though they had them for over a year longer than I have.

I know that can be hard to follow in this sort of talk, but to put it simply: Thompson’s claim in this written statement and in what he apparently told Brian Hooker doesn’t match the facts. The facts in his own documents.

There is no substance to the “isolated autism” complaint.

Given that, what about the second argument, the one about the finding of an association between the MMR and autism found for African American boys? This is the finding that Brian Hooker presented in his now-retracted study. Based on the contemporaneous notes, yes, the CDC did find an apparent association between the MMR vaccine and autism in African American boys. As I mentioned earlier, Thompson himself has said this doesn’t mean that there’s a causal relationship. Now we can say even more: it was a spurious result. How can we say that? Because if that result were due to a true causal link between the MMR vaccine and autism, the autism prevalence in African Americans would be double that of Caucasians. And in study after study, that isn’t seen.

Let’s take an example. Here’s a recent CDC autism prevalence study. They state:

Estimated ASD prevalence was significantly higher among non-Hispanic white children aged 8 years (15.5 per 1,000) compared with non-Hispanic black children (13.2 per 1,000),

African Americans are being diagnosed less often than non-Hispanic white kids. Less often. If the claim that Vaxxed is making were true, African Americans would be diagnosed twice as often.

It was a spurious result.

So in the end, both of the pieces of evidence that Vaxxed claims supposedly show vaccines being linked to autism aren’t really links.

Having addressed that, what about the claims of “fraud” that we keep hearing? Wakefield’s fraud claims are convoluted, and don’t hold up to scrutiny. Let me explain.

Before starting the research, the CDC team laid out an analysis plan, which Thompson and Wakefield also refer to as the protocol. This plan went through many revisions over a period of nearly 6 months. From April to September of 2001.

One of the claims Wakefield made in his first videos was that the CDC saw the result for African American boys and needed to bury it. So they supposedly abandoned the protocol and introduced a new part of the study where they used data from birth certificates. According to the story, this birth certificate group was introduced to reduce the number of children in the analysis and reduce the statistical power of the result.

That would have been very problematic if it were true, but it simply isn’t. The plan to use birth certificates was included in the very first analysis plan, months before they actually did any analysis. This is clear from the documents Thompson had. I know this because Thompson turned those documents over to Congressman Bill Posey, and Mr. Posey was gracious enough to give them to me on request. This is also made clear in the timeline that Thompson spelled out in his written statement to Congressman Posey.

Let me make an aside here—if you are starting to think, this is going by really fast, you are correct. It’s very hard to really go into the details here simply. Which is another reason why it’s important to focus on the point that there isn’t really evidence here that vaccines cause autism. That Thompson’s own words are that the results don’t mean that there’s a causal link, and that he recommends people not skip vaccines.

And we can go on with what Thompson actually said, rather than what people claim he said.

In all the material made public to date, there isn’t a statement by Thompson that fraud was committed. In fact, his notes at the time include the statement that “everyone has good intentions”.

He did feel that the African American result should have been made public. Apparently feels this very strongly. And felt that not making that public amounted to lying. But he also states, “Reasonable scientists can and do differ in their interpretation of information.” That’s not, “my coworkers are fraudsters”, that’s stating that there were scientific disagreements.

Scientific disagreement isn’t fraud.

Thompson also discussed an event where he says many of his team got together at the end of the study to decide which paper documents to discard. He makes a very strong statement that he felt this was possibly illegal and he kept copies of the documents.

Let me first point out something: I’ve worked with confidential documents my whole professional career. Back when most communication was paper, one would collect a great deal from each project. It was completely appropriate to order a confidential bin—which looks like a garbage can with a lock—and discard those documents not critical to keep.

Let me point out something else: I have copies of the documents Thompson retained. He gave electronic versions to Congressman Bill Posey, and upon request, the Congressman graciously let me have a copy.

There are about 1000 pages of documents. Many will claim 10,000 or even more, but it’s roughly 1,000 pages. And I can see no reason why at the least most if not all of those could not have been discarded. There are pages and pages of meeting itineraries. There are multiple versions of the protocol—the analysis plan for the study. While these are interesting to look over, they show nothing that indicates anything unethical. The analyses presented can all be recreated with the original data. Which was preserved and offered to any qualified researcher, and this was made clear on the CDC website.

One can also piece together the timeline from these documents, and in so doing show that the claim that the CDC team added the birth certificate study after finding problematic results is, well, just false.

And that’s only one of the claims one can check in the “whistleblower “ story, details that just don’t match with facts.
At this point it is worth noting that Wakefield’s team supposedly had these documents, or many of them, well before they went public with their PR effort. And, they have to my knowledge never made the documents public. They did not allow people to check their claims. I think that is very telling.

You can find the documents online. I put them online. When I got them I worked to digest them and put a discussion online as quickly as I could. And with that discussion I put the documents so people could check my claims. This is something Wakefield and his team did not do.

And with that, let me bring this back to the beginning: Vaxxed, the “cdc whistleblower”, however this effort is labeled, it isn’t about disclosing hidden information to bring the truth to people. It has been about controlling information to get a specific message out. As far as I can see, that message is “vaccines cause autism and don’t trust research that says otherwise”.

And the bottom line here is that this isn’t evidence that vaccines cause autism. It is very easy to get bogged down in all the details, all the fact checking of Vaxxed (believe me, I could go on much longer about the inaccuracies in the film and public statements by their team). But that diverts attention away from this simple message—this doesn’t show vaccines cause autism—and that diversion plays into the apparent strategy of their team.

If you want to read the William Thompson documents, here’s the link

The William Thompson Documents. There’s no whistle to blow.

Another William Thompson quote they won’t tell you: “I will say the Geiers were not right”

Here’s a statement by William Thompson that they won’t be quoting

The Hooker/Thompson conversations: were significant analyses omitted from Hooker’s paper?

The Brian Hooker/William Thompson conversations

“Statement of William W. Thompson, Ph.D., Regarding the 2004 Article Examining the Possibility of a Relationship Between MMR Vaccine and Autism”

Movie review: VAXXED

Todd Drezner: Cinema Libre Studio and “Vaxxed”

Wakefield responds to his film being pulled by the Tribeca Film Festival. And it’s very classic Wakefield

A look at the “Garbage Can Quote” in full context

Emily Willingham takes on the Tempest in a Trashcan

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

Andrew Wakefield and Brian Hooker complain. Not honestly, but they complain

A new Autism Media Channel video. A chance to watch some sleight of hand

A look at the analysis plan for DeStefano’s MMR study: no evidence of fraud
Harpocrates Speaks on: MMR, the CDC and Brian Hooker: A Guide for Parents and the Media

Comment on: Expression of Concern: Measles-mumps-rubella vaccination timing and autism among young African American boys: a reanalysis of CDC data

Autism, Atlanta, MMR: serious questions and also how Brian Hooker and Andrew Wakefield are causing damage to the autism communities

Cinema Libre Studios and Andrew Wakefield’s Vaxxed team threaten autistic autism mom

25 Jul

I am hesitant to write this. Not hesitant because I have any doubts that the actions of Cinema Libre Studios and Andrew Wakefield’s team are wrong. No, hesitant because it has all the hallmarks of people trolling for attention and free publicity. I do not like giving people like Andrew Wakefield or Cinema Libre Studio attention.

That said, I can’t let that stop me from speaking out. In this case Cinema Libre Studios, who are distributing the faux documentary “Vaxxed”, have sent a letter to Fiona O’Leary threatening legal action:

Vaxxed-24-Cinema-Libre-threat-to-sue-Fiona-Oleary

As you can read, the letter is not just on behalf of Cinema Libre, it is also on behalf of Andrew Wakefield, Polly Tommey and Del Bigtree (the main voices promoting “Vaxxed” and it’s misinformation).

Philipe Diaz (Cinema Libre Studios CEO) demands that Fiona not only “cease and desist from interfering with distribution of the film” (while giving no examples of actions of her interfering), but also demands that she “cease and desist…from making any statement to any person with regard to the film, Cinema Libre Studio and/or Autism Media Channel, its agents, representatives and/or employees, including Dr. Andrew Wakefield, Del Bigtree and Polly Tommey.”

Apparently Philipe Diaz is not above hypocrisy. Recall that the marketing campaign for Vaxxed relied heavily upon their ouster from the Tribeca Film Festival. They erroneously claimed that Tribeca “censored” Vaxxed and that Vaxxed is “the film they don’t want you to see”.

So, a film festival chooses which films to give laurels to (and which to not give laurels to) and this is “censorship” and bad. But someone criticizes the film and the film makers and this is grounds for legal action.

In case you weren’t aware, Fiona O’Leary is an autistic adult. She is the parent of 5, two of whom are autistic.

What is the most common theme you will hear from Andrew Wakefield? That’s right, “listen to the parents. The parents are right.”

Well, except for the majority of us who disagree with Wakefield. Then we parents are ignored or even threatened, right Andy?

When Vaxxed was rightfully removed from the Tribeca Film Festival and other festivals, Philipe Diaz erroneously called those actions “… a slap in the face to the First Amendment.” But when faced with criticism, Diaz demands silence.

Since you apparently don’t understand free speech, let’s explain this one to you, Mr. Diaz. Tribeca didn’t try to stop you showing your film everywhere. They just said that your film would not get shown at Tribeca and get Tribeca Laurels. Just as if you were responsible enough to have not picked up Vaxxed and not put Cinema Libre’s name on it, that wouldn’t be an infringement of free speech.

Telling someone they can’t even talk about you, your company or your clients…that’s a clear attempt to quash free speech.

Polly Tommey, so you won’t judge parents who murder their autistic children, but you will have your distributor send letters threatening legal action to parents who don’t agree with you?

There’s an example of someone who has their priorities mixed up.

Del Bigtree, song-and-dance man turned pitch-man for bad advocacy and science. You are basically branding “Be Brave” within your little community. Pat yourself on the back, Del, you are so brave. Threatening legal action against an autistic parent of autistic children. Don’t respond to criticism, use lawyers to try to quash it.

OK, Del, be brave. Start discovery now. Send Fiona the financial records for Vaxxed to show her how she could be harming your business. Send her all your group’s communications about Vaxxed and about Fiona so she can see that this isn’t just retaliation. That would be brave.

I don’t think you have the guts. You stand behind your studio and lawyers and send threats and demands. Hell, you didn’t even have the guts to apologize for telling people “now’s the time” for guns.

And to both of you–Bigtree and Tommey–at the end of your nonpology video you thank your followers for stopping an article in the Sunday Times. Really? So the whole “pot calling the kettle black” thing you have going here with faux censorship is a pattern?

You want “be brave”? How about standing up to an unreasonable threat? Because that’s exactly what Fiona did:

Team Wakefield, you could learn a lot from Fiona.


By Matt Carey

Del Bigtree crosses the line: tells Vaxxed audience “Now’s the time” for guns.

19 Jul

Del Bigtree helped Andrew Wakefield produce a faux documentary called Vaxxed. Vaxxed has been discussed here and elsewhere a great deal, but here is a review from Science Based Medicine if you are looking for more details (Andrew Wakefield’s VAXXED: Antivaccine propaganda at its most pernicious).

The team that made Vaxxed has been using the screenings as a platform to give personal appearances. Below is a clip from one of those personal appearances. I would encourage you to watch for yourself:

In case you couldn’t watch or skipped the video, here are the concluding statements of this particular speech by Mr. Bigtree:

“Anyone who believes in the right to bear arms. To stand up against your government. I don’t know what you were saving that gun for then. I don’t know when you planned on using it if they were going to take control of your own body away.

It’s now. Now’s the time.”

We need to stop here and do what neither Polly Tommey nor anyone in that audience had the guts to do: stand up to Del Bigtree and say No! No, this is not the time to use guns.

This is no joking matter. Bigtree’s comments are at best beyond irresponsible and at worst a call for armed violence.

Whatever was in Bigtree’s mind, why didn’t anyone speak out against this? There was nervous laughter when Bigtree made his call to arms so people can’t claim they didn’t hear or didn’t understand what he was suggesting. Here’s the Facebook post with the full video. There are over 1500 comments. And I can’t find one that says, “No, Del, we reject a call to violence.”

I want to keep this short, but I will repeat myself for emphasis: Del Bigtree crossed the line in a big way with his comments. His comments are reprehensible.

But standing by silent while he makes these reprehensible statements is also wrong.

Ironically Del Bigtree’s facebook page has this as the top saved image:

13529029_1095999520470545_3497709959753327622_n

You fans of Del Bigtree, you need to walk the walk. Stop patting yourselves on the back for being “brave” and show that you are indeed brave individuals. Disavow these statements.

Del Bigtree, you need to dial this back. You need to apologize and take back these statements.

By Matt Carey

Double checking Brian Hooker’s story in VAXXED

7 Jul

One of the arguments so often given for “vaccines cause autism” is that of “then why do so many parents tell exactly the same story?”

Well, they don’t. As we saw with JB Handley (Which is it, Mr. Handley?) even a single parent can shift and change stories over time. And he’s just one example. But we have also seen many times that once the stories we are told are compared to the facts, like say the medical records or videos in vaccine court, parent recollection is shown to be wrong.

Well, now we have Brian Hooker’s two stories. We have what he says in Vaxxed, and we have his recent vaccine court case. An in-depth legal analysis is provided by Prof. Dorit Reiss as BRIAN HOOKER’S VACCINE INJURY CLAIM DENIED BY NVICP.

From the video from Vaxxed, we hear Brian Hooker describe his son’s story starting at 3:26.

My son [SRH] was born in [month] of [year].

(home video with Brian Hooker saying: “[SRH] what does the cow say?”).

(second home video: Brian Hooker: “tweet tweet”, SRH vocalizes which parents interpret as “doggie”).

“Two weeks after his 15 month vaccines, then he lost all language. He lost all eye contact. You would pick him up and he would just hang limp.”

That’s pretty dramatic. And the sort of story that convinces many that, yes, indeed, vaccines might cause autism.

But ask this question, if this happened, why doesn’t Brian Hooker’s son’s medical record say anything like that?

From the Court’s decision, we see that the medical records show that Brian Hooker’s son was already delayed at 15 months. In fact, he was already showing signs of delays at 4 months. First, to be clear: Brian Hooker’s argument before the Court changed with time, and this can lead to some confusion. He first argued that one set of vaccines caused his child’s autism. When the Court informed Mr. Hooker that his cases was filed after the statute of limitations (filed more than 3 years from when the alleged vaccine injury occurred), Mr Hooker amended his complaint to add the claim that the 15 month vaccines (the ones he appears to be referring to in Vaxxed) “aggravated” the ASD as well. Since this event was later, it was not “untimely filed”.

In the end the court found that Mr. Hooker’s claims failed on their merits, so timely or untimely filed didn’t matter.

That all said, here’s an excerpt from the Court’s decision that discusses the 15 month vaccinations:

SRH received his 15-month well child examination on [DATE], and was found to be “healthy.” (Ex. 35, p. 13.) However, at this visit his developmental progress chart indicates that SRH had not achieved most of the expected milestones. (Id., p. 24.) His Denver II developmental progress chart indicates that he could not speak six words, could not run or climb stairs, could not remove garments or use a spoon, and could not stack two cubes, — indeed, he failed all but one of the developmental milestones for 15 months. (Id.) Following a physical examination of SRH, Dr. Heller-Bair administered the usually recommended vaccinations — i.e., DTaP #4, Hib #4, and OPV. (Id., pp. 13, 26.) (These vaccinations of [DATE], were the vaccinations that Petitioners now allege to have “significantly aggravated” SRH’s autism.)

OK, that’s the 15 month vaccination visit. But as to “two weeks after his 15 month vaccines” that Mr. Hooker describes in Vaxxed? What does the record show happened? The Court transcript reads:

Nineteen days later, on [DATE], both parents accompanied SRH to the pediatrician’s office, where she recorded that his temperature was 101.8°, and that both tympanic membranes appeared normal. (Ex. 35, p. 14.) She included the following description.

One-year-old with 1-day history of low-grade fever, irritability, decreased appetite, nasal congestion. Child has a history of recurrent ear infections. Is scheduled for typanostomy tube placement by Dr. Fong in about 4 days’ time. Mom is concerned that he may have an ongoing ear infection prior to surgery.

(Id.) No other recent symptoms were noted. Dr. Heller-Bair determined that SRH had a viral upper respiratory infection — in other words, “a cold” — and reassured the parents that he did not have an ear infection. (Id.)

Emphasis added. And now repeated: no other recent symptoms were noted. Not “he lost all language”. Not “he lost eye contact”. Not “he was hanging limp”.

As to signs of autism before the vaccines in question, we read this (Dr. Leventhal was an expert witness for the government):

Also included in Dr. Leventhal’s list of early symptoms of developmental disorders was another symptom particularly indicative of ASD — “evidence of language delay and reports of social interaction problems” at age 12 months. (Ex. C, p. 30, para. g.) Language delay and social interaction problems, are classic symptoms of autism.

Of course, many will discount this as coming from the government’s expert (even though he’s reporting the medical record).

So, what did the parents have to say?

Third, several representations by the Petitioners themselves indicate that SRH was suffering from developmental problems, likely early symptoms of his ASD, well prior to [DATE–about 15 months]. For example, SRH’s parents reported that at one year of age (about [DATE]), he seemed “delayed in interactive skills.” (Ex. 2, p. 46.) On [DATE], SRH’s parents reported that they had been worried about developmental delays “for about 6 months,” which would put the onset around [DATE–about 13 months]. (Ex. 6, p. 19.) And on occasions, SRH’s parents identified the onset of SRH’s developmental problems as occurring about the time of his MMR vaccination, which took place on [DATE–about 12 months]. (See Ex. 5, p. 30 (SRH lost eye contact “after his MMR shot”); Ex. 14, p. 38 (“delays, deterioration of verbal skills coincidental [with] MMR”)).

Emphasis in the original.

Parents reported loss of eye contact at about 12 months. But in Vaxxed Brian Hooker says his child lost eye contact two weeks after the 15 month vaccinations. So again we see that the stories don’t match up. And recall that Brian Hooker apparently didn’t mention this loss of eye contact to the doctor nor did the doctor notice 19 days after those 15 month vaccines.

Finally, it’s worth noting that pretty much the time that Vaxxed has been touring, Brian Hooker and the rest of those doing personal appearances have known that the Hooker case failed. And let’s not downplay this, the case was not even close. The Court decision includes in the conclusion:

After studying the extensive evidence in this case, I am convinced that the opinions provided by Petitioners’ experts in this case, advising the Hooker family that there is a causal connection between SRH’s vaccinations and either the initial causation or aggravation of SRH’s ASD, were quite wrong.

emphasis in the original.

The experts were quite wrong. The science was the same as was extensively argued in the Omnibus Autism Proceeding, and which failed to come close to being convincing then. The case history showed no sign of vaccine injury or developmental regression. On every count, Brian Hooker’s case failed. But we don’t hear that in the public talks. Why would Brian Hooker, Andrew Wakefield and the rest want to tell the public that not only are the “facts” in Vaxxed wrong, but the science had also been tested yet again and failed yet again? I mean, it’s not like they are calling this a “documentary” or anything. Except that’s precisely what they claim.


By Matt Carey

Why do people have to see Vaxxed to criticize it? Wakefield’s own description of us tells us Vaxxed is bogus.

21 Apr

Andrew Wakefield got an interview on Fox to defend his film Vaxxed (the video and transcript are at Fox Provides Platform For Discredited Doctor To Claim CDC Is Hiding Evidence That Vaccines Cause Autism). And he’s shooting back at his critics: if you haven’t seen the film you can’t criticize it. It’s doubly ironic. First Wakefield’s team didn’t send out DVD’s to the press, and, second, many critics have seen the film. But the “you can’t comment on the film because you haven’t seen it” is the same argument he used with his horrible “Who Killed Alex Spourdalakis” film. (For those who are unfamiliar with it, it’s a film where Wakefield defends a mother and caregiver for the brutal murder of an autistic young man.) That film was worse than I expected it to be. And I was expecting bad.

Wakefield describes his film in the Fox interview. And just based on Wakefield’s own words, we can see that the film is inaccurate.

Wakefield:

Dr. William Thompson comes forward and says they have known for 14 years that MMR vaccine is causally associated with autism and they have covered it up.

This is wrong. First, the study Wakefield is talking about can not show causality. This sort of epidemiology can show researcher “here’s a place to look for causality”. Anyone who has been in this field for 20 years, like Andrew Wakefield, would know that. ]

But let’s get more to the point–Thompson didn’t say that they showed a causal connection.

From a statement by William Thompson:

The fact that we found a strong statistically significant finding among black males does not mean that there was a true association between the MMR vaccine and autism-like features in this subpopulation.

no “true association” means it doesn’t show causality.

Wakefield goes on:

And so the film, it’s his words, it’s his opinion, it’s his documents that really carry the message of this film that there has been a huge cover-up which has put millions of American children in harm’s way and it was totally unnecessary.

But as we’ve just seen, the key point of the film is precisely not Thompson’s words or opinion.

Wakefield appears to be using William Thompson as a sock puppet. We are told what Wakefield seems to either believe or wants us to hear. And with the claim that it’s not Wakefield doing the telling but Thompson.

But Wakefield’s own words about Vaxxed don’t match Thompson’s own words.

But per Wakefield people can’t criticize the film.

For whatever it’s worth, it’s not just William Thompson who stated that the study doesn’t show a causal connection. Even Brian Hooker, a colleague of Wakefield, didn’t claim a causal connection in his re-analysis of the CDC data. Here’s as close as Brian Hooker gets to claiming causality in his (now retracted) paper:

Additional research is required to better understand the relationship between MMR exposure and autism in African American males

Not “we found a causal connection”, but effectively “someone should test this for causality”. Frankly I don’t think this was a moment of intellectual honesty from Brian Hooker as much as pragmatics: referees know that this study can’t show causality so they would have rejected Hooker’s paper had he tried.

Thompson’s documents don’t show a causal connection either. I’ve made them public so people can check what is in them. Wakefield hasn’t. But Wakefield asks people to “make up their own mind”. The documents don’t show a “huge cover-up”. They don’t show “millions of children in harm’s way”.

Simple check of facts here: The “huge cover-up” putting millions of American children in harm’s way”, shouldn’t we address this? Wakefield is discussing one preliminary result in the CDC study: African American boys vaccinated before age 3. In all other groups, the study (confirmed by Brian Hooker) shows what all the other MMR studies show: no indication of an MMR/autism link. This point, by the way, isn’t stressed in Vaxxed. Even when they bring in autism families, they are mostly white.

But, back to this result. Leaving aside that Vaxxed isn’t accurate, shouldn’t we be concerned? Well let’s do some checking. Brian Hooker in his paper is saying that African American boys are 3.36 times more likely to be diagnosed autistic if they get the MMR vaccine before 36 months. If that is due to a real causal connection, we should easily see that in other data. MMR uptake is generally comparable by race. So even though African Americans are a minority in the U.S., 3.36 is high enough that some indication of a risk would have shown up in one of the other autism/MMR studies. But let’s not just handwave like that. Let’s check directly: is the autism prevalence higher in African Americans? Boys are roughly 4 times more likely to be diagnosed as girls, using Hooker’s 3.36 increased risk for African American boys (and if I’ve done my math correctly) African Americans should have an autism prevalence 2.9 times higher than Caucasians.

2.9 times higher autism prevalence. That’s big. We would see that on autism prevalence studies easily.

The CDC recently released an autism prevalence estimate. And they show that African Americans are less likely to be diagnosed.

Estimated ASD prevalence was significantly higher among non-Hispanic white children aged 8 years (15.5 per 1,000) compared with non-Hispanic black children (13.2 per 1,000), and Hispanic (10.1 per 1,000) children aged 8 years.

Yes, African Americans are less likely to be diagnosed (about a factor of 0.85). Again, using the data that Wakefield claims shows a “causal” connection between the MMR and autism, we expect 2.9 times higher prevalence. The facts just don’t match up with Wakefield’s claims.

The fact that autistic people from racial/ethnic minorities or low income families are less likely to be diagnosed is a problem true autism advocates are trying to fix. Many are not receiving the appropriate services and supports. But that’s what real autism advocates are working on, not Andrew Wakefield.

So, we have a film that by comparing Andrew Wakefield’s own description with the facts is inaccurate. But per Andrew Wakefield people can’t criticize Vaxxed if they haven’t seen it. That’s a bit of a logical fail on Mr. Wakefield’s part. Not like we have a shortage of those.


By Matt Carey

Movie review: VAXXED

2 Apr

Andrew Wakefield’s film, VAXXED, opened today in a theater in New York. Mr. Wakefield somehow convinced Robert De Niro to break the rules of the Tribeca Film Festival and personally insert the film into the lineup of TFF. When this was discovered, Mr. De Niro first defended his decision and, after getting input from people whose expertise is science, pulled the film. Mr. Wakefield, with no apparent sense of irony about having avoided due process to get into the festival, cried out that he was denied due process in the removal process. But didn’t hesitate to add the tagline to his film poster, “the film they don’t want you to see”.

The opening of VAXXED had about 20 people in the audience by one account. I couldn’t attend, but someone I know did and gave me a lot of feedback. I was preparing to give summarize that feedback here when a review on indewire came out: ‘Vaxxed: From Cover-Up to Catastrophe’ is Designed to Trick You (Review) which concurs with the impressions I was about to relate here. Here’s a paragraph from that review:

In a statement leading up to the film’s release, Wakefield’s co-writer Del Bigtree claimed that “Vaxxed” is “not an anti-vaccine movie,” which is kind of like saying “Triumph of the Will” is anti-Hitler. Strung together in obvious ways to induce a constant sense of dread (look out for the slo-mo shot of a crying child!), “Vaxxed” shamelessly repeats the same non-arguments over and over again, drowning facts in murky proclamations.

VAXXED purports to be the story of a “CDC Whistleblower”, William Thompson, who contacted Brian Hooker, a vocal proponent of the idea that vaccines cause autism. The “about” page for the movie pretty much only talks about Thompson. One thing people going to see VAXXED will find is that the CDC study/William Thompson part is a very small part of the film. Most of it is filler, much of the conversation that goes on all the time online about vaccines.

But what is the Thompson story and why is it supposedly so explosive? Well, William Thompson was researcher who worked on vaccine epidemiology at the CDC. Most of that was many years ago. In fact the research discussed in VAXXED started in 2001. Thompson sought out Brian Hooker, a very vocal proponent of the idea that vaccines cause autism and led Hooker to a finding that was not reported when the paper was published in 2004.

Since this is really the heart of the film, allow me to go into some detail. The main claim was that the CDC team found in their first pass/rough analysis that autism was more common in African American boys who got the MMR vaccine than those who didn’t. Another finding was that for children without other conditions, there also appeared to be a higher autism risk. This group was called at the start of the study “isolated autism”, as in autism isolated from other conditions.

Let’s take that second one first, isolated autism. Here’s the thing–when the CDC team published their study in 2004, they did report on this. Instead of autism isolated from all other conditions, they showed autism without intellectual disability. The CDC reported that the calculated risk for this group was “statistically significant”.

In other words–what did they hide? Nothing. It’s the same result that Wakefield says was hidden. The only question I have– if this result is so important, why didn’t Wakefield or Hooker notice for the 10 years after it was published?

So, what about the other result? Thompson told Hooker that the CDC team another possible result. This result was limited to only African American boys, a fact that is largely glossed over in a film of largely white people. And this Autism/MMR/African American boys result didn’t remain statistically significant under the CDC planned, more complete, analysis. Which is to say, it’s not strong, it’s not really controversial.

But let’s ignore that for the moment. Let’s ask ourselves, if this is the smoking gun, the finding that was so explosive that a CDC researcher reached out to Brian Hooker to tell him about it, why don’t we don’t hear about that that finding until about 1/2 way through the film? And why is so little time spent on it? I’d think this would be a huge part of the film.

Let’s take another step back, a step away from the film. Here’s the thing about this from my perspective as an autism parent–if you believe this represents a real effect (that the MMR causes autism in African American males), you act very differently than Andrew Wakefield. You try to answer the question. Wakefield was at one point running a charity whose stated purpose was autism research (in the end, about half the money went to Wakefield’s salary). He is reported to have raised $400k for this film. Four hundred thousand dollars. I have seen no effort whatsoever by Mr. Wakefield to investigate this claim of a link between MMR and autism in African American boys. Instead we keep hearing about efforts on getting a congressional hearing on the subject. For those outside the autism community: there have been two autism related congressional hearings in recent years. While they have provided much YouTube footage for people pushing the idea that vaccines cause autism, they haven’t done anything to make life better for the autism communities. Nothing.

But one might argue, William Thompson tells us that this shows vaccines cause autism, right? No, he doesn’t. Here’s a public statement (one of only 2 I am aware of) that Mr. Thompson wrote:

The fact that we found a strong statistically significant finding among black males does not mean that there was a true association between the MMR vaccine and autism-like features in this subpopulation

But you won’t find that point emphasized in VAXXED. Instead you will find Wakefield and cowriter Del Bigtree claiming that Thompson says that the CDC “…knew that vaccines were actually causing autism”

There’s a huge difference between “does not mean a true association” and “knew that vaccines were actually causing autism”. I don’t know how big the difference is in film producer land, but in science, it’s night and day.

While we are exploring whether this claim of an MMR/autism link in African American boys, it’s worth noting that just yesterday the CDC came out with their latest autism report (they do this every year at the beginning of April). The CDC autism prevalence numbers show a very different story about the possibility of the MMR causing autism in African American boys. The autism prevalence in African American children is lower than that in whites. If the MMR/Autism link were real and as large as the rough analysis claimed, it would be higher.

And what about the dramatic claim of research fraud by the CDC team? This claim not only doesn’t hold up, but it’s morphed a bit over time. Originally Wakefield and Hooker claimed that the CDC changed their analysis plan after finding the “race effect”. That is–they saw a result they didn’t like and then changed the analysis plan. Let me show you. Here’s a quote from an earlier Wakefield video on the subject

“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.”

We also see this claim in the press release that accompanied Brian Hooker’s “reanalysis” of the CDC data:

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 co-authors observed results indicating a statistical association between MMR timing and autism among African-American 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.”

Emphasis added.

The problem with that statement was that the final “revised analysis plan” was dated Sept 5, 2001 and the “race effect” wasn’t seen until late October/early November 2001. Two months later. In other words, for this version of the fraud claim to work, the CDC team would have to travel back in time. We know this timeline because the William Thompson documents are now public and we can compare the analysis plans and analysis.

If this seems confusing, it gets worse in VAXXED where we are taken into a discussion of the CDC team switching from using race data from school records to birth certificates and how this reduces the statistical power and hides an effect and all.

Rather than go into details about that, I’ll state this: this argument is a red herring. And wrong, but a red herring. Yes the CDC had data from both school and birth records. But they always planned on using the birth certificate data for their final analysis. From the analysis plan we read:

For the subset of children with Georgia birth records, sub-analyses will be performed in which potential confounding variables from the birth certificate will be used to adjust the estimated association between the MMR vaccine and autism. The variables that will be assessed as potential confounders will be birth weight, APGAR scores, gestational age, birth type, parity, maternal age, maternal race/ethnicity, and maternal education

Or to put it simply, the school records didn’t include things like APGAR scores and so much more that the CDC team planned to use from the start.

So much for “research fraud”.

We can go through the details, but let me just say that a great deal of VAXXED is not really directly the story–the story that is promised in the VAXXED web page. A lot of discussion about and by Andrew Wakefield, for example. We also get parents speaking about their beliefs that vaccines caused their child to be autistic. While very emotional and not something to be dismissed, this doesn’t address the question of whether vaccines cause autism or if there was malfeasance at the CDC.

We a significant amount of filler in the “Big Pharma is bad” sort. The industry insider they get to speak is person who worked in sales for Vioxx. No expertise on vaccines, no experience on the inside for vaccines. And more that I just won’t go into detail about.

Does that mean it won’t be convincing? Well, a large part of the audience for this is already convinced. But will they convince more people with this film? Sadly, the answer is yes. People are not afforded the chance to see the counter arguments. And the appeal to emotion that is much of the film will play. Much better than dry analysis like the above that I have provided. But do I find this movie in the least accurate? No.


By Matt Carey

Todd Drezner: Cinema Libre Studio and “Vaxxed”

31 Mar
Below is an open letter by Todd Drezner, director of Loving Lamposts, to Cinema Libre  the distributors of Andrew Wakefield’s VAXXED.

Dear Cinema Libre,

I’m writing to explain why I’m so disappointed in your decision to distribute “Vaxxed.” I have three main objections:

1) Perhaps of most relevance to Cinema Libre is that Andrew Wakefield has assembled his film using unethical and dishonest editing techniques. As documented here, the “Vaxxed” trailer splices excerpts from two different phone calls together and then inserts a narrator giving an interpretation of those calls that is not supported by the facts. And this is merely one example from a brief trailer. Who knows how many misleading edits Wakefield has made in the full film?

Given Cinema Libre’s commitment to the idea that documentaries can make a social impact, I would think you would want to be associated with filmmakers who follow ethical practices and journalistic standards when making documentaries. When a dishonest filmmaker like Wakefield receives distribution and a theatrical release, it undermines all documentary filmmakers. We depend on the trust of our audiences. Your decision to support a dishonest film like “Vaxxed” destroys that trust. Documentary filmmaker Penny Lane outlines these issues nicely here.

2) Cinema Libre’s blog post about “Vaxxed” refers to “the suppression of medical data by a governmental agency that may well be contributing to a significant health crisis.” This is, I’m sorry to say, no more than a fever dream. First, as you will remember from watching “Loving Lampposts,” the autism “epidemic” can be explained by a combination of changing diagnostic criteria, increasing awareness of autism, and the benefits of receiving a diagnosis (in terms of the access to services and support the diagnosis provides).

Secondly, the CDC “whistleblower” around whom the trailer (and I assume the film) revolves did not reveal anything nearly as sinister as the trailer suggests. It is true that William Thompson of the CDC revealed to Dr. Brian Hooker that a 2004 study of the possible link between the MMR vaccine and autism supposedly found an association between the vaccine and autism in African American males.

Before I say anything about that finding, let’s note what that finding rules out: any association between the MMR vaccine and any other group besides African American males. Even if Thompson’s assertion were true (it’s not), it still doesn’t support the idea that the MMR vaccine causes autism in the many people who are not African American males.

But what about the supposed link between the vaccine and African American males? It’s nothing. Basically, the original study of the association between the vaccine and autism did not leave out African Americans on purpose. Rather, it did so to eliminate “confounders” — that is, any factor other than the vaccine that could have been associated with autism. The authors of the study wanted to be sure that any effect they saw was caused by the MMR and not something else. Dr. Hooker’s “re-analysis” of the study does not account for confounders properly and even if it did, the population of African American males in the study is too small to support any broad conclusions. And one more time, even if the supposed link between African American males and the MMR vaccine were significant, it still rules out any link between the vaccine and all other groups. You can read about these issues in much more detail here and here.

It’s well known that Andrew Wakefield’s research into the MMR vaccine and autism was fraudulent. His film is based on equally poor science.

3) Despite Richard Castro’s statement on your blog that the Tribeca Film Festival succumbed to “pressure to censor” “Vaxxed,” there was no censorship. As I’m sure you’re aware, the First Amendment guarantee of freedom of speech prohibits the government from restricting speech. The Tribeca Film Festival is not government. It is a private organization that is free to screen, or not screen, any film it chooses for any reason. Indeed, Tribeca rejects the work of thousands of filmmakers every year. I’m sure Cinema Libre rejects many filmmakers as well. Are they being censored? Of course not.

On the “Vaxxed” website, Andrew Wakefield and Producer Del Bigtree claim that they were “denied due process” when Tribeca decided not to screen “Vaxxed.” This is absurd. There is no such thing as due process when it comes to the decisions of a film festival selection committee. Nor should there be. If such a thing existed, every prestigious film festival would spend all its time sifting through complaints from unhappy filmmakers. There will always be unhappy filmmakers who are denied admission to film festivals. Andrew Wakefield is now one of them. But he is not a censored filmmaker.

On a personal note, I was and remain grateful for the work Cinema Libre did to promote “Loving Lampposts” when it was released. You got the film screened at venues I could not have and publicized it through news coverage I did not have access to. I hoped and believed that along the way, you came to appreciate the film’s message that autistic people can thrive when they are accepted and when they receive the support they need to function in a world not built for them. Apparently, and much to my dismay, this message did not sink in.

By releasing “Vaxxed,” Cinema Libre is actively harming thousands of autistic people. While we should be discussing ways to best support autistic people and help them lead fulfilling lives, you would instead have us follow a discredited scientist and dishonest filmmaker down a rabbit hole that leads only to long debunked conspiracy theories. I am profoundly disappointed.

I don’t expect that Cinema Libre will change its decision. But given our long business relationship, I felt I owed you this explanation of where I stand. I hope that sometime in the future you may find ways to undo the damage you are about to cause.

Yes, California children are dying of measles. Today. It’s called SSPE. Andrew Wakefield, Del Bigtree, Polly Tommey, stop lying about it.

2 Nov

One of the very frustrating aspects of the vaccines-cause-autism myth is that my community–autism parents–are largely responsible for spreading the misinformation and the fear. One need only look at Jenny McCarthy, Generation Rescue, the National Autism Association, TACA (Talk about Curing Autism), Polly Tommey, and almost any online discussion about vaccines to see the misinformation being spread by autism parents.

Listen to someone spreading the fear about the MMR vaccine and you will almost always hear, “measles doesn’t kill”. I’ve heard it a number of times from Andrew Wakefield. Remember him? He’s the guy whose unethical research 20 years ago fueled the fear we have today. His current effort is a fake documentary called “Vaxxed”. His team includes Del Bigtree (a former actor and low level producer for daytime TV) and Polly Tommey (an autism parent and Wakefield ally). As part of their PR tour for their film, they’ve given a number of personal appearances and posted video to Facebook. Watch them a few times and you will see Wakefield’s team–especially Del Bigtree–that measles is not a fatal disease. That no one has died of measles in California, they say. Del Bigtree focuses on California a great deal. He’s from California. California had a sizable outbreak recently and, partially as a result of that, changed their laws on vaccines for students.

Del Bigtree is wrong, as he usually is. Measles does kill. The death rate in France over the past decade has been about 1 in 2000, And that’s the number for people killed during the infection. The recent outbreaks in California have not resulted in immediate deaths, but we haven’t had outbreaks as large as those in France. However, measles is killing people in California right now. It’s killing them with the long-term infection called SSPE. People in California have died in recent years, and one is currently dying of SSPE. SSPE is incurable. It’s a slow, agonizing death.

Want more facts about SSPE?

What is Subacute Sclerosing Panencephalitis?
Subacute sclerosing panencephalitis (SSPE) is a progressive neurological disorder of children and young adults that affects the central nervous system (CNS). It is a slow, but persistent, viral infection caused by defective measles virus.

and read more from that same site:

What is the prognosis?
Most individuals with SSPE will die within 1 to 3 years of diagnosis. In a small percentage of people, the disease will progress rapidly, leading to death over a short course within three months of diagnosis. Another small group will have a chronic, slowly progressive form, some with relapses and remissions. A very small number (approximately 5 percent) may experience spontaneous long term improvement and regain lost function. Prevention, in the form of measles vaccination, is the only real “cure” for SSPE.

You can read more but here’s what we are talking about: in addition to the people who die from measles infections, measles infects the brain in some people and they die. They die over years, slowly losing function. Spending years knowing death is coming.

And a recent study shows that SSPE has been happening in California. People have died in recent years. Someone is dying right now of SSPE.

There are a number of news stories about this. Below is the abstract from the conference.

Subacute Sclerosing Panencephalitis: the Devastating Measles Complication is More Common than We Think

Background: Subacute sclerosing panencephalitis (SSPE) is a fatal complication of measles. Thought to be rare, SSPE incidence decreased with routine measles vaccination, but infants with measles remain at highest risk of this complication. We reviewed SSPE cases in California from 1998-2016 to understand current risk factors for SPPE.

Methods: SSPE cases had a clinically compatible illness and either 1) measles IgG antibody detection in the cerebrospinal fluid; 2) characteristic pattern on electroencephalography; 3) typical histologic findings in brain biopsy; or 4) medical record documentation of SSPE-related complications. Cases were identified though a state death certificate search, reports from the Centers for Disease Control and Prevention, or through investigations for undiagnosed neurologic disease. Measles IgG detection was performed using indirect enzyme immunoassay at the California Department of Public Health (CDPH) or by immunofluorescence assay at clinical laboratories.

Results: Seventeen SSPE cases were identified. Males outnumbered females 2.4:1. Twelve (71%) cases had a clinical history of a febrile rash illness compatible with measles; all 12 had illness prior to 15 months of age and measles vaccination. Eight (67%) children were living in the United States when they had measles. SSPE was diagnosed at a median age of 12 years (range 3-35 years), with a latency period of 9.5 years (range 2.5-34 years). Many cases had long-standing cognitive or motor problems prior to diagnosis. Among measles cases reported to CDPH during 1988-1991, incidence of SSPE was 1:1367 for children < 5 years, and 1:609 for children < 12 months at time of measles disease.

Conclusion: SSPE cases in California occurred at much higher rate than previously published among unvaccinated children who were infected with measles in infancy. Protection of infants younger than 12-15 months of age, when measles vaccine is routinely administered, requires avoidance of travel to endemic areas, or early vaccination prior to travel. Clinicians should be aware of the possibility of SSPE in patients with compatible symptoms, even in older patients with no specific history of measles infection. SSPE demonstrates the high human cost of “natural” measles immunity.

Let’s pull that last sentence out for emphasis:

SSPE demonstrates the high human cost of “natural” measles immunity.

The study above is based on something called data. Del Bigtree bases his arguments on a Brady Bunch episode.

No, I’m not making that up, Del Bigtree claims that since there was a Brady Bunch episode about measles, it must not have been a big deal in the 1960’s. That’s about as logical as saying, “well, there was this TV show about being in the Marines called ‘Gomer Pyle’. So, obviously, the Vietnam War was no big deal.”

I have zero belief that Del Bigtree (or Jenny McCarthy, Generation Rescue, the Age of Autism blog, Andrew Wakefield, or any of the rest) will change their claims that “measles is no big deal”. Why? Because Del (and the rest) are cowards. It takes guts, serious courage, to stand up and say, “I was wrong”. It takes guts to break from your community and say, “people, this position is dangerous”.

It takes the sort of courage that Del Bigtree and the rest just do not have.


by Matt Carey