Archive | National Autism Association RSS feed for this section

The war on Tom Insel and the IACC

23 Oct

Tom Insel is director of the National Institute of Mental Health (NIMH) but he is better known to readers of this blog as the chair of the Interagency Autism Coordinating Committee. If you read other autism blogs, he’s probably very well known to you, as he has been the target of a concerted attack from the vaccines-cause-autism groups for a few months now. They even got the publicist, David Kirby, to take their battle to the public in a CBS interview.

Let me take a moment to make a side point. The vaccines-cause-autism groups (SafeMinds, Generation Rescue, the National Autism Association, Talk About Curing Autism (TACA)…I’m probably missing one or two), are basically a single consortium as evidenced by their single blog and their shared membership. I don’t see the need to treat them as separate entities. I really don’t see that they should be given multiple representations on the IACC.

I’ve been watching the IACC pretty closely for some time. I’ve also been watching the vaccines-cause-autism consortium. I’ve been watching the consortium build pressure against Dr. Insel.

One thing I’ve noticed: this level of pressure directed at Dr. Insel wasn’t always the case. Less than a year ago, Dr. Insel was not their target.

Take a look at one of the classic pieces of IACC intimidation: a piece called “Grinkers Stinker“. This is dated January, 2008. It was timed to coincide with a 4-day workshop that was the kick-off for the Strategic Plan process.

“Grinker’s Stinker” was a piece about the Dr. Joyce Chung, the former IACC coordinator. She is the wife of Prof. Roy Richard Grinker, anthropologist and author of the book Unstrange Minds. Dr. Grinker has publicly stated that he accepts the scientific consensus that vaccines did not cause an epidemic of autism. Dr. Chung has made no public statements (at least that I can find), but the lack of actual information about her or her opinions didn’t stop a blog post decrying her position on the IACC. From the blog post:

Does Joyce Chung agree with her husband? Did they ask her this question before she took the job?

Oddly, the last comment to that blog piece, by Generation Rescue’s “DC Liason” Kelli Ann Davis, starts with the question, “Can I suggest that we try and put an end to all the mudslinging?”

History has proven that, no, the Age of Autism can’t put an end to the mudslinging. Unfortunate, that.

Take a look at the blog post. There is no mention of Dr. Insel. No one decrying his “lack of leadership”, no one claiming “collusion” or “malfeasance”. None of the mudslinging terms currently used against members of the IACC, especially Dr. Insel. In fact, the first mention of Dr. Insel is in the comment by Ms. Davis. In her comment Ms. Davis suggests that Dr. Insel will be watching out for conflicts of interest.

Times certainly have changed. The Age of Autism likes to demonize those it disagrees with, and Dr. Insel certainly has been a recent target.

What happened?

Dr. Insel (a) had the IACC reconsider an initiative to call for a vaccine-autism study to be included in the Strategic Plan and (b) spoke before a congressional hearing about why vaccine/autism studies are not a high priority.

Not surprising to many of the readers here, I am sure, the vaccines-cause-autism consortium have a single issue (vaccines). As long as Dr. Insel’s position on vaccine/autism research, there was hope for the consortium and they left him alone. Once his current opinion formed and was public, he was public enemy number one. Yes, Dr. Paul Offit (vaccinologist and outspoken critic of the notion that vaccines cause autism) has been superseded.

Recently, Dan Olmsted (owner of the Age of Autism website) called for Dr. Insel to resign. Again, it boils down to the single issue: vaccines.

So, here we are. The vaccines-cause-autism consortium has declared war on Tom Insel for opposing their single-item agenda. If you think “war” is too strong a word, take it up with Mr. Olmsted. In referring to the recent incident where notes from an IACC member were made public:

…notes dropped on the floor (see the notes here) at the IACC, recovered by friendly forces and reported on our blog…

Yes, the Age of Autism people are “friendly forces”.

Here’s my perspective on Dr. Insel, for whatever it may be worth. He is the chair of the IACC. In my opinion, his role is to run the meetings and manage the staff. He should be getting good people in to serve on the IACC and the subcommittees and good people to consult on the topics that are discussed. Basically, his role is that of a facilitator–get good people together with the tools they need to do their job. He needs to be knowledgeable enough on the subject (autism) to do this.

You know what? Given the fact that his full time job is director of the NIMH, he’s actually done a pretty good job.

Is there room for improvement? Heck yeah. How about putting a greater emphasis on research into the needs of autistic adults? The majority of autistics are adults. And yet only 5% of the funding is being applied to this critical area.

But, of course, the squeaky wheels (the vaccines-cause-autism consortium in this case) get the grease. The squeaky wheels have been calling for research into environmental causes of autism. Tens of millions of dollars are being focused on this. Why are the squeaky wheels unhappy? Because the squeaky wheels didn’t really mean “environmental causes”. That was only a code word for vaccines.

This level of tension is not just sad. It is detrimental to the progress of the IACC. There are a lot of autistics, parents, professionals and organizations who are interested in working with the IACC. Why spend any more effort on the groups that have declared war?

(note, I made a number of changes in this piece shortly after publishing it)

It’s time to stop the intimidation tactics towards the IACC

21 Oct

The Interagency Autism Coordinating Committee (IACC) is group of government employees and autism community stakeholders who are chartered with coordinating research activities within the U.S. government’s Department of Health and Human Services (HHS).

The official charter is:

The Interagency Autism Coordinating Committee (Committee) shall coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder to combat autism through research, screening, intervention and education. The Committee’s primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programs and initiatives. The Committee will serve as a forum and assist in increasing public understanding of the member agencies’ activities, programs, policies, and research, and in bringing important matters of interest forward for discussion.

The IACC predates the Combating Autism Act (CAA), but has taken on the role of coodination and strategic planning for the CAA.

This is no small effort. We are talking about a group that helps to set the goals for about $100M in research funding a year. The U.S. government’s research efforts into autism are the largest in the world. The research portfolio covers causation through supports for autistic adults.

I don’t think I will surprise anyone when I say that the autism communities, like any communities, have many different ideas of what focus should be placed on autism research. I would also expect little argument that the loudest voice in that discussion comes from the groups promoting the notion that vaccines caused an autism epidemic. Most of these groups are sponsors of the Age of Autism blog.

These groups lobbied hard to get vaccine research included in the Combating Autism Act. The failed. They did manage to get some senators to mention vaccines in the “colloquy“. These were statements made by senators when the Act was passed. Basically, these are speeches, not law. These statements were also not very strong. Consider this statement by Senator Enzi:

However, I want to be clear that, for the purposes of biomedical research, no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder. Thus, I hope that the National Institutes of Health will consider broad research avenues into this critical area, within the Autism Centers of Excellence as well as the Centers of Excellence for Environmental Health and Autism. No stone should remain unturned in trying to learn more about this baffling disorder, especially given how little we know.

The strongest argument that can be made is that three senators made a nonbinding statement that the National Institutes of Health should “consider” research on vaccines.

The Combating Autism Act was signed over three years ago. Since that time it has become even more clear that vaccines are not a primary cause of autism. The two major theories that the MMR vaccine or that Thimerosal cause autism have been shown to have very little scientific basis. Both were discussed at length in the Autism Omnibus Proceedings. The MMR causation theory has already been rejected as “not even close” and upheld by three separate appellate judges. The thimerosal theory has not been decided as yet, but the science was no better than that used for MMR. I expect that the Thimerosal theory will suffer the same fate as the MMR theory.

The number of people applying to the “vaccine court” for compensation for autism peaked six years ago. 2,437 families petitioned the Court for hearings alleging autism as a vaccine injury in 2003. In 2008 that number shrank to 253. The vaccines-cause-autism theory is clearly losing ground even within the autism community.

That doesn’t mean that the vaccines-cause-autism organizations are giving up. Quite the opposite. They are ratcheting up the pressure, focusing on individuals.

I actually find it hard to consider the vaccine/autism groups to be separate entities. These groups are SafeMinds, Talk About Curing Autism (TACA), the Autism Research Institute (ARI), Generation Rescue, and The National Autism Association (NAA). They do vary in their approaches to some topics. For example, TACA and Generation Rescue put more resources into direct contact with families than, say, SafeMinds. But, when it comes to lobbying about vaccines, they are pretty much a single organization, sharing a significant amount of key personnel.

These organizations are represented on the IACC by Lyn Redwood of SafeMinds. The grassroots activist efforts of the organizations is coordinated through their blog, the Age of Autism. It is a particularly clever and effective construct: the advocacy organizations can claim to be separate from the particularly nasty rhetoric of their own blog. As a separate entity, the finances of the Age of Autism blog will not be made public.

That all said, the Age of Autism should be considered the voice of these organizations and the actions coordinated on that blog are the actions of its parent organizations.

I can understand why groups such as SafeMinds or Generation Rescue would want to be able to claim some distance from the Age of Autism (AoA). AoA is used to coordinate serious intimidation efforts.

The recent departure of Dr. Story Landis from the IACC was engineered by AoA. They found notes made during an IACC meeting and planned a surprise attack to coincide with an IACC meeting. As an ironic twist, AoA got someone sympathetic to their cause to resign the IACC.

AoA has also targeted IACC member Yvette M. Janvier, M.D., twisting her words “the idea that autistic kids are sick offends me!” into “I am offended by sick autistic kids”.

AoA launched an attack on IACC coordinator Joyce Chung. This coincided with a week long IACC meeting to iron out the Strategic Plan. Her “crime”? She is married to Richard Grinker, author of Unstrange Minds. Dr. Grinker is public in his belief that there has not been an epidemic of vaccine-induced autism, a belief held by the vast majority of the autism research community. What does Dr. Chung have to say publicly on the subject? Nothing as far as I can see. What actions did she take that warranted an attack? None.

The good people at AoA have attempted legal intimidation as well. They got a Congressional Oversight Committee to investigate the IACC. When that didn’t pan out, they sought “legal advice” on alleged FACA violations. No word on what, if anything, became of that effort either. The Age of Autism isn’t shy about touting their attacks. It would seem safe to assume this one failed.

AoA has recently set their sights on the IACC’s chair, Dr. Tom Insel. I am sure this came as no surprise to Dr. Insel. Earlier this year he called for a re-vote on a proposal to add a vaccine study to the IACC’s Strategic Plan, and later made public statements in a congressional hearing that there wasn’t enough data to warrant a vaccine-autism study.

Other than being bold enough to discuss the view held by the vast majority of autism researchers, what is Dr. Insel’s greatest crime? His brother invented a vaccine. Yes, Dr. Richard Insel helped develop a vaccine for Haemophilus influenza B (Hib). This vaccine has been quite effective in reducing Hib infections. But, any contact with vaccine research or company is considered a fatal conflict of interest to the bloggers at the Age of Autism.

I’m sure that there is more going on behind the scenes.

If this were all to the story, it would be sad but uninteresting. Unfortunately, there is fallout from all of this intimidation. I already know that good researchers have avoided autism as a subject in order to avoid the groups represented by the Age of Autism. I suspect that good people are avoiding participating in the IACC meetings as well. But, the most direct fallout is that the IACC members are unable to speak their minds on the subject of vaccines. Beyond vaccines, they have to live in fear of any possible infraction of the rules or any statement that could be misinterpreted will be used against them. A prime example was given above where “the idea that autistic kids are sick offends me!” was warped into “I am offended by sick autistic kids”.

If this were some minor, make-work bureaucratic committee with no real impact I wouldn’t care. But this is the group that sets the plan for the largest autism research in the world. Not only is this sort of intimidation a crime in general, it is hurting my kid’s chances at a better life.

It is time for the intimidation to stop. The Age of Autism bloggers should learn a lesson from their recent, childish attack. Acting out without thinking can hurt even them. This event is being noticed. Both the journals Nature and Science have blog posts about this recent debacle. The Simons Foundation interviewed the director of the NIH on the subject.

I’ll say it again: it is time for the intimidation to stop.

Paul Offit responds to the press release by NAA (and carried by AoA)

14 Sep

The National Autism Association put out a press release last week that was an amazing piece of work. Just not in a good way.

I was not the first to comment on it. Below is a post from the Countering Age of Autism blog that I asked to rerun here.

So, with permission:

On the 8th, NAA sent out a press release rehashing the same misinformation that AoA habitually runs (it’s almost like they got it right from them and Wakefield. They probably did). AoA picked it up and ran with it, and I spent a fair portion of my day trying to figure out who NAA was as well as mount an adequate rebuttal. I don’t know that it’s an adequate rebuttal, but it is what I can do.

I appreciate the researchers who work tirelessly in labs trying to figure out ways to save lives. I admire the diligence and commitment it takes to work for over two decades on one vaccine because you believe in it that strongly. Now, I don’t reach the level of adoring fan like Wakefield’s groupies apparently do (if you saw the Friday morning piece on the Today show before the Sunday Dateline, you know what I’m talking about), but I’m not a groupie kind of gal. Maybe those women are. My point is, this isn’t blind adoration speaking. I’ve read Dr. Offit’s books, all of them, because I wanted to know more about vaccines (read those first), and I read Autism’s False Prophets, as well, because I wanted to see what he’d found out.

For most of my son’s (who will be 20 this year) life, I have been focused on HIM. I homeschooled him for ten years, I spent the years before that often all day in the school system with him. He was the center of my world as I worked with him to help him. I didn’t join support groups; I didn’t talk to a lot of parents with autistic children. My husband and I labored alone for the most part. I wasn’t desperate; I was determined. I read everything I could on autism, mostly the science because I am so not into the woo. If it was woo, I stayed away from it. Until March of this year when I realized how much was out there.

Why did I start looking, now, after all these years? My daughters are on the spectrum as well. They are 12 and 14 years younger than their brother and it seemed like I needed to see what was out there. Especially since I have students who ask about vaccines and autism. I delved deep into the science of it, and then into the woo. Not all the woo, mostly the easy access free stuff at Huff and AoA and like autism organizations. Gods, but there is a frakload of woo out there. And really nasty behavior on the part of the woo-ites. Like the threats that Dr. Offit receives. Not acceptable behavior period.

So, when this stuff hit, I emailed Dr Offit to ask if he’d like to rebut this latest round of trash talk. And, thankfully, he did.

And here is the email that Countering Age of Autism posted:

Run with the permission of Dr. Offit:

Dear Kim,

Thanks for the support. At some point those who believe that vaccines cause autism will realize that I’m not their problem. The data are their problem. But I guess, absent supportive data, it’s easier and more satifying to attack me (I would also like to point out that I didn’t do any of these studies that exonerated vaccines as a cause of autism; I just explain them to the media).

Although it might sound crazy, I take some solace in the fact that those who oppose vaccines continue to get the facts wrong. It’s somewhat reassuring to know that they hate me for the wrong reasons. And the Huffington Post blog by James Moore, a well-respected journalist, is completely off the mark. I would have expected more.

1) I am not a paid consultant to Merck.

2) I never “voted myself rich” while I was on the ACIP. RotaTeq came up for a vote in 2006, three years after I was no longer a voting member. And even if I were a member, I wouldn’t have been allowed to vote. Further, I consistently declared my potential conflict. Although some people may find this hard to believe, I’m actually proud to be the co-inventor of the rotavirus vaccine and was more than happy to declare this at the beginning of every meeting.

3) What (the hell) does being the co-inventor of a vaccine have to do with standing up for the science of vaccine safety. It certainly doesn’t affect my financial position one way or the other. I do it because I think that children are getting hurt by all of this (the same reason I went into pediatrics and worked on vaccines). The logic of the anti-vaccine folks escapes me here. Let me see if I’ve got this right; I invent a vaccine that can save as many as 2,000 lives a day so that I can make money so that I can lie about vaccine safety so I can hurt children.

4) I do not receive salary support or laboratory support from the Hilleman endowed chair. Five percent of that endowment does go to support members of our division, but not me.

5) I never received one penny of the $350,000 claimed in the Burton report. All of that money went to Dr. Fred Clark. I was totally supported by grants to NIH.

I really do appreciate your support, Kim. Few seem to be willing to stand up for me. And it does occasionally get me down. But mostly it just makes me angrier and more determined to hang in there.

Best,

Paul

The National Autism Association’s embarrassing spitefulness

14 Sep

In a recent Dateline episode about Dr. Andrew Wakefield, Matt Lauer stated that to some groups Dr. Paul Offit is “public enemy number one”.

As if to prove Matt Lauer right, the National Autism Association launched an attack on Dr. Offit for his appearance on Dateline. They did this through a press release, Offit’s Failure to Disclose Jeopardizes Swine Flu Vaccine Program.

The press release has the header: “Doctor Who Made Millions Off MMR Manufacturer Does Not Tell Public of His Financial Relationship during NBC Dateline Broadcast”

The NAA state further,

Dr. Paul Offit of Children’s Hospital of Philadelphia (CHOP), who was interviewed for a Dateline NBC television special, failed to tell millions of viewers that while he was promoting MMR as safe he had also made tens of millions of dollars from selling another vaccine patent to Merck, which is the manufacturer of MMR.

Let’s take a look at what was actually said, shall we?

Matt Lauer states (about 1:45 into the video clip), “Dr. Offit is a target. Not just for supporting vaccine safety, but because he himself made millions of dollars for inventing a vaccine.”

Quite frankly, the NAA is lying. Matt Lauer knew that Dr. Offit invented a vaccine and made money from his vaccine and Matt Lauer informed his audience of this. My guess if pressed the NAA will likely hide behind the Merck connection. Yeah. Like Matt Lauer and his producer didn’t know that RotaTeq is sold by Merck. (if so, that Merck logo on the RotaTeq box should have been a big clue, don’t you think?)

A minor point: Dr. Offit did not sell a vaccine patent to Merck. He assigned the rights to his invention the Children’s Hospital of Philadelphia (CHOP), a standard arrangement for an academic or industry employee. CHOP then applied for and was granted patents. CHOP (not Dr. Offit) licensed the patent to Merck, and then sold the license rights to a third party for a lump sum. Out of that sum, CHOP payed Dr. Offit, Dr. Plotkin and Dr. Clark.

The NAA press release further states:

According to CHOP documents, Offit’s share of a royalty sale for the Rotateq vaccine to Merck is a minimum of $29 million and may approach $50 million.

This is wrong. This is wrong on two counts. First, there are no CHOP documents which state that Dr. Offit’s share of the sale of the patent rights for $29 to $50M. There can’t be documents that say this because Dr. Offit’s share was about 1/10 of this amount.

How did the NAA get such incorrect information? There is a blog post, written by Dan Olmsted and Mark Blaxill which estimates this based on information they gleaned from the CHOP website. Their misinformation has been spread far since that post.

The only problem is, Dan Olmsted and Mark Blaxill were wrong. They made some big (and easily avoided) mistakes.

First mistake is that they used the incorrect Patent and Intellectual Property Policy in their calculation. That agreement wasn’t in effect when Dr. Offit and his co-inventors invented what became RotaTeq. Even Misters Blaxill and Olmsted acknowledged this in their post.

The old inventor agreement (easily found on the CHOP website) states:

payment to inventors was based on gross income, with 50 percent distribution on the first $250,000, 30 percent on the next $250,000, 15 percent on the next $4.5 million and 10 percent on the remainder.

The bulk of the payout was 10% of net income. Not 30% as Misters Blaxill and Olmsted assumed.

The second mistake is that Misters Olmsted and Blaxill neglected the fact that Dr. Offit shared the CHOP payment with his co-inventors, Dr. Stanley Plotkin and Dr. Fred Clark.

Mister Blaxill has stated in the comments to his post that Clark and Plotkin were not faculty of CHOP, but, instead were at Wistar. Again, one can easily confirm that they were faculty at CHOP with a simple google search. The CHOP research timeline states,

Drs. H. Fred Clark, Stanley Plotkin and Paul Offit develop a rotavirus vaccine for infantile gastroenteritis.

CHOP’s 2006 annual report (also easily found) states:

As part of its distinguished legacy of developing vaccines to improve the lives of children, Children’s Hospital investigators Paul Offit, M.D., chief, Division of Infectious Diseases; H Fred Clark, D.V.M., Ph.D.; Stanley Plotkin, M.D.; and The Wistar Institute developed RotaTeq®, the oral rotavirus vaccine that was licensed and further developed by Merck & Co. Inc.

Dr. Plotkin is the former chief of infectious diseases at CHOP, and Dr. Clark was a research professor of Pediatrics at CHOP. Both easily confirmed through the CHOP website.

It is unequivocal that CHOP considered Dr. Clark and Dr. Plotkin to be a part of the CHOP team. The Intellectual property policy (and all standard IP policies) divide the inventors’ share amongst all inventors.

Sorry to go into such detail, but I can not figure out why Misters Blaxill and Olmsted have not corrected their mistake. One commenter to their blog pointed out that Doctors Clark and Plotkin were CHOP faculty, only to have Mr. Blaxill respond that “…Offit would have received the entirety of the CHOP inventor’s share”. I’d be interested what Mr. Blaxill based that statement upon.

CHOP is reported to have sold their rights to RotaTeq for $182M. Using the correct information, this leads to an estimated payout of about $6M. (Note, Mr. Blaxill and Mr. Olmsted report that the net income to CHOP was $153M. This would lead to about $5M payment for each inventor).

Using the correct CHOP policy, one can calculate (based on $182M):

Inventor share
50% of first $250k is $125,000
30% of the next $250k is $75,000
15% of the next $4.5M is is $675,000
10% of the remainder ($176,750,000) is $17,675,000

Total inventor share $18,550,000
This is split amongst the three inventors, leading to:
each inventor getting $6,183,333

I have confirmed that this is is an accurate estimate with Dr. Offit.

I post this calculation not as an estimate, but as a demonstration that the accurate amount could have been calculated by Misters Olmsted and Blaxill with publicly available information at the time they did their blog post Misters Blaxill and Olmsted took great efforts to find information about the inventor policies at multiple other institutions–much more effort than was required to find the accurate information on CHOP’s own website.

$6M is a lot of money, don’t get me wrong. Dr. Offit has acknowledged this in his statements. But, it is much lower than the estimate that Mark Blaxill and Dan Olmsted have publicized. The honorable thing for these two gentlemen to do now is to correct their mistake.

The real honorable thing to do is to not only correct their error, but to correct the error wherever it has propagated.

What is more important than the amount of the sale is the fact that CHOP sold its interest in the patent. Why is that important? Because that means that the amount of money CHOP can make from this patent will be unaffected by just about anything Dr. Offit does or say.

But, I’ve strayed a bit on this post, away from the NAA. The source of the misinformation is the Age of Autism blog and Misters Blaxill and Olmsted. Perhaps the NAA could use the argument that they didn’t create the misinformation, they were just passing it along? Except that the NAA sponsors the Age of Autism blog.

Back to the rest of the press release. It is an amazing piece of work. I found it especially odd when the NAA interview themselves and make it sound like news. They don’t try to hide it, they give quotes from Wendy Founier and Jim Moody…and then list themselves as the contact people for the press release.

They also interview Dr. Wakefield, who calls Dr. Offit “disingenuous” at the beginning of the paragraph, and finishes the paragraph showing concern for how people like Dr. Offit might impact the integrity of the swine flu vaccine.

Anyone detect the irony there? Dr. Wakefield (and the NAA) are so concerned about the swine flu vaccine program that they worry about Dr. Offit impacting the integrity of the program?

Talk about disingenuous.

The press release repeats one of the stranger of the accusations against Dr. Offit–the claim that he does not treat patients with autism:

Beyond Offit’s financial conflicts, autism advocates are also dismayed about the physician’s credibility on speaking about autism in general, as he does not treat patients with autism.

Unless the NAA wants to state that autistics in Philadelphia do not get infectious diseases, it is pretty certain that Dr. Offit has treated a number of autistics in his long career.

To cap this all off, the Age of Autism blog, sponsored by the NAA, ran a post advertising the NAA press release. However, instead of calling it what it is, a press release, they framed it as being “reported by Reuters”.

Yeah. They tried to make it sound like news reporting by a major outlet rather than a press release.

Even their own readership balked at that and they had to change the title. No apology, though. Just an acknowledgment and a claim that it wasn’t “an intentional attempt to mislead“. If you go over to Age of Autism to check, you’ll have to do some searching as they didn’t correct the post but, rather, buried it in the comments.

The NAA press release was a cheap swipe at Dr. Offit and it is as transparent as it was childish. It is an embarrassment to the autism communities.

As an appendix, I add the following information:

The Countering Age of Autism blog posted a comment by Dr. Offit. Also on Countering, frequent commenter to this blog, David N. Brown, wrote an excellent deconstruction of the NAA press release.

David N. Brown also took on the task of informing Mr. Blaxill of his error in the comments to Mr. Blaxill’s Age of Autism blog post. Mr. Blaxill responded with:

David Brown, please read the article before making incorrect statements. The payment to CHOP was $182 million (Wistar received a separate and earlier $45 million dollar payment). From this, Offit would have received the entirety of the CHOP inventor’s share. Benchmarks show the inventor’s distribution can range from 15-35% of royalty income, with the current CHOP policy set at 30% (a share we didn’t feature in our calculations because it is a new standard and may not have been the relevant one for Offit’s distribution). In other words, our estimate is conservative and uses a percentage that is at the very low end of the relevant range.

I informed Mr. Blaxill and Mr. Olmsted ahead of publishing this post of this information, specifically that (a) Dr. Offit did not receive the entirety of the CHOP payout and that (b) their calculation of the CHOP inventors’ share was incorrect and not even a conservative estimate. I included links they could use to confirm the information. I encouraged them to make the correction. Mr. Blaxill and Mr. Olmsted have declined.

How Much Longer?

9 Sep

The National Autism Association has a campaign afoot to raise awareness with the catch-phrase “how much longer”.

As in these quotes from their campaign:

“FDA, HOW MUCH LONGER WILL YOU APPROVE VACCINES THAT AREN’T NEARLY AS SAFE AS THEY COULD BE?”

Or

“HOW MUCH LONGER, NIH, before you adequately fund environmental research?”

I have a question:

How much longer, NAA, before you act like a reasonable member of the autism communities? (substitute Generation Rescue or SafeMinds for NAA, they are all basically the same group).

The NAA quote about NIH shows a lot about the NAA’s intent. “Adequately fund environmental research”. A lot of money is going to environmental research for autism causation at NIH. A lot. But, until it includes vaccine-causation, no amount is going to be considered “adequate” to the NAA.

NIH and most of the medical community doesn’t think that there is a good reason to do vaccine-causation research. But that isn’t the reason why groups like NIH don’t fund research. Let’s face it, NIH have an entire center devoted to spending on money that most of the medical community considers a waste.

The NAA would like to place the blame on everyone. Everyone else, that is. It’s a vast conspiracy, funded by Pharma dollars, with everyone afraid to admit the truth about the damage they caused. Do I have that right, NAA?

The real problem, NAA/Safe-Minds/Generation Rescue, is that you are your own worst enemy.

Ask yourselves a very simple question: if NIH is willing to spend money on projects with little hope of success, if NIH is willing to spend money on questions where the general expectation is that the answer will be no (remember that chelation study?), if they are willing to do that, why not spend money on a vaccine-causation project?

To answer that, you have to ask, what is the cost of a vaccine-causation project?

The real cost isn’t calculated in dollars. The real cost in is the damage to public health that such a study would bring. Yes, funding a do-vaccines-cause-autism project would hurt public health.

How can I say that? Because you guys at NAA (and sister orgs) would use the fact that NIH has funded such a project to attack vaccines. The entire time from the approval of the funds to the time the study results were published, you would be claiming “See, the government thinks vaccines are causing the autism epidemic”. What happens when the project is done? If the research doesn’t agree with your position, you will reject it. That is your clear track record.

Besides, what quality independent researcher would take on such a project? Anyone able to do such a study is is likely smart enough to realize that he/she would be hounded for the rest of his/her life if he/she doesn’t publish results that agree with your preset expectations.

You guys are stuck in the past. A past where you could say “vaccines caused an autism epidemic” and people listened. It’s time to listen to the people who support you. Really listen. Listen and realize that just because someone is supporting you doesn’t mean that he/she supports everything you say. Case in point: Dr. Bernadine Healy. Does she say there has been an epidemic of vaccine-induced autism? Does she say the epidemiology is junk? No. She says there may be small groups. Groups too small to be detected in the epidemiology that’s been done. That’s really, really small, by the way.

Get it? Even your supporters say you haven’t proven anything and that at most you represent a small fraction of the autistic population. You’ve been able to “wag the dog” for a long time, but that time is over. It’s time to realize that at most you would be a small part of the autism communities. It’s time to realize that the autism communities are part of a larger disability community.

If this seems too complicated, here are a few simple steps you can take to rebuild your credibility:

1) admit that thimerosal did not cause an “autism epidemic”
2) admit that MMR did not cause an “autism epidemic”
3) stop discounting all science that disagrees with you.
4) stop smearing people who disagree with you.
5) stop creating misleading faux research.
6) stop trying to discredit fine American institutions.
7) stop denying the existence of a large number of adult autistics.

Oh there’s more. A lot more.

As I said above, NIH is willing to fund research that constituents want even when it is very likely to be fruitless. But you have made it expensive to perform from a public health perspective and won’t accept any answer except the one you want.

How much longer until you get vaccine-autism research? You tell us. You are the ones in the way. Your “how much longer” campaign probably just set you back at least a year.

You probably see this as harsh. In reality it is probably the best advice you have been given all day.

Why Generation Rescue shouldn’t be on the IACC

27 May

I have been very critical of the lobbying efforts of Generation Rescue. I have found their actions to be far from helpful in the struggle to obtain quality research for people with autism. One issue I haven’t covered is the fact that Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, one “short term goal” listed on the Strategic Plan is:

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

We need a lot more research like that if we are to serve our existing adult population and prepare for the kids of today to transition into adulthood.

This sort of research, oddly enough, isn’t supported by many of the autism advocacy organizations. Instead, they see the IACC as a pathway to their singular goal: recognition of the supposed link between vaccines and autism.

The fact of the matter is simple–Generation Rescue should not hold a seat on the IACC. The reasons are simple, and are below:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally mind you, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

Ms. Redwood is ably assisted in steering all discussions towards vaccines in one of the working groups by Mark Blaxill. Again, I have never heard anyone from Generation Rescue say, “Dang, that Mark Blaxill just doesn’t get our point of view!”

So, if the Generation Rescue position is already represented, why give GR an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment—why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to representation on a government body, why should every faction of what is, really, one big vaccines-cause-autism group be given a seat at the table?

Yes, this is much like item (1)—all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Please, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise. We don’t need to hear twice as much (or more) vaccine-oriented discussions.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue. Moreover, I really don’t see how Generation Rescue can lead the way in directing autism research given their demonstrated lack of understanding of the principles of research.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again—they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

And, once again, why should all the different heads of the same beast (TACA/Generation Rescue/SafeMinds/NAA) be treated as separate entities?

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though

Richard Deth – gambling man

27 Apr

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

He is:

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

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

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

To which Kathleen replied replied:

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

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

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

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

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

So what does this mean? What does it prove?

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

Why Generation Rescue doesn’t need a seat on the IACC

22 Apr

Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee
 (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, they f

For example, one “short term goal” listed on the Strategic Plan is

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

Groups like Generation Rescue, Safe Minds, the National Autism Association and TACA would like to see the Strategic Plan state that autism is caused by vaccines and call for research on the topic. Well, that’s one opinion. One that is already well represented on the IACC. That is only one reason why adding an IACC seat for Generation Rescue would be a bad idea. Here are the ones that come to mind readily:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

So, if the Generation Rescue position is already represented, why give them an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

Sorry, I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment–why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to the IACC, why should every faction of what is, really, one big group be given a seat at the table?

Yes, this is much like item (1)–all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Sorry, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again–they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though.

Are autism organizations acting in good faith?

19 Jan

As one might imagine, this is a follow up post to Kev’s post, Did the IACC act in bad faith?

Obviously, much damage control is ongoing right now. Some autism organizations were hoping for a document from the U.S. Federal Government indicating that vaccines might be implicated as a causal factor in autism. No surprises there. They managed to get some language and a possible research project into an early approval stage for inclusion in the IACC’s Strategic Plan.

Now, these same autism organizations are crying foul that the vaccine language was removed. Autism Speaks has pulled support for the Plan under the cover story that they are upset at the process–that a “previously voted-on decision” was revisited without “forewarning”.

Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December—would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

Bob Wright, founder of Autism Speaks, stated “Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

So, this wasn’t on the agenda, so it is a “surprise tactic” and this is why the process is “tainted”. Somehow, this just didn’t ring true to me when I read it.

Anyone else check the actual agenda? In case you don’t want to click on the link, here it is:

Time Event
8:00 Registration
9:00 Call to Order and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
9:05 Brief Introductions of IACC Members
9:10 Review and Decisions: IACC Strategic Plan for ASD Research: Introduction
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
10:40 Break
10:45 Continuation – Review and Desicisons: IACC Strategic Plan: Budget Recommendations
12:15 Lunch
12:45 Continuation – Review and Decisions: IACC Strategic Plan: Budget Recommendations
1:15 Review and Decisions: IACC Strategic Plan: Finalizing the Plan
2:00 Break
2:10 Open Session for Public Comment
2:30 Closing Comments and Adjournment

What are the main parts of the agenda? “Review and Desicisons: IACC Strategic Plan: Budget Recommendations” and “Review and Decisions: IACC Strategic Plan: Finalizing the Plan”

Pretty broad agenda item there. Definitely broad enough to cover revisiting the vaccine proposals. Not a “surprise tactic”, not something outside the agenda. Just an action that probably saved the Strategic Plan from being voted down.

TACA is stating that the IACC “rescinds vaccine research initiatives”. Makes it sound like there was a hard commitment to the research initiatives. There wasn’t: the Strategic Plan wasn’t finalized. They also play the “it wasn’t on the agenda” card, like Mr. Wright.

SafeMinds is stating that the action by the IACC defies “wishes of its own scientists”. No kidding, they say that. They say that it also defies the wishes of “Congress”. As Kev has already pointed out, where does the Combating Autism Act state that vaccines should be researched? (hint, it doesn’t). I guess a couple of people speaking in a Colloquy are all of Congress? Because, that’s the only place where this vaccine language is included related to the CAA–the Colloquy–a couple of short speeches given after the Act was voted upon. There were also arguments made before the CAA was voted on about vaccines, including a lot of lobbying by these same autism organizations that are now crying “foul!”

That tells this reader one very important fact: Congress specifically did not include vaccine language in the Combating Autism Act. Seriously, we likely wouldn’t have a CAA if the vaccine language was included. They wouldn’t have had the votes to get it passed. But, hey, that doesn’t make a good press release, does it?

SafeMinds has gone so far as to pull its support for the Strategic Plan. If SafeMinds’ very own Lyn Redwood would like to follow the example set by Alison Tepper Singer and resign (in this case, from the IACC), I’ve got a few really good suggestions for who could fill the seat.

But pull it all together: Autism Speaks, TACA, NAA…all these press releases are damage control. OK, that and they are jockeying for position to complain to the new U.S. administration about how they have been “marginalized”. But, are they being truthful? Are they, as supposed representatives of the “Autism Community”, using their position wisely?

Let’s face facts: the Strategic Plan was going to be voted down. The majority of the members didn’t want the vaccine language included. The options were simple: revisit the sections on vaccines now and get the Plan passed or have the Plan go down in flames now and rewrite the sections on vaccines later.

Either way, the vaccine language was going to be out.

Doesn’t make a good press release, though, does it? “We were going to lose anyway, but we want to pretend like they acted improperly”. Somehow I don’t see Generation Rescue, TACA, SafeMinds, or the NAA issuing such a simple, truthful statement.

Did the IACC act in bad faith?

17 Jan

A slew of Press Releases from Safe Minds and the NAA appeared today decrying the IACC’s re-vote on two pieces of autism/vaccine research. SafeMinds say:

In a highly unusual departure from procedure, government representatives to the Federal Interagency Autism Advisory Committee (IACC) voted this week against conducting studies on vaccine-autism research despite approval of the same studies at their prior meeting. The research was supported by numerous autism organizations and requested by IACC’s scientific work groups and Congress

NAA said:

In an unprecedented move on Wednesday, the Interagency Autism Coordinating Committee (IACC) removed previously approved vaccine safety research from the Strategic Plan for Autism Research objectives…. The committee’s action is in direct opposition to the majority of its public members who support vaccine research, and to the Congressional directive of the Combating Autism Act of 2006 (CAA) which specifically called for research into “potential links between vaccines, vaccine components, and autism spectrum disorder.”

So, there’s a number of issues that need addressing. Lets take them in the easiest to address first.

1) The allegation that the re-vote is ‘highly unusual’ or a ‘departure from procedure’ or ‘unprecedented’.

Well, it may well be unprecedented. Thats because this is only the second time that vote was taken on this issue. The first time they voted one way, this time they voted another. If this was the 300th vote then NAA might have a point. As it is, they don’t. They’re using these as Scare Words to make the situation sound alarming.

I’ve talked to a number of people who attended the IACC meetings both in person and via the phone. The claim that the re-vote was a ‘highly unusual departure from procedure’ is rubbish. Why? *Because there is no procedure* . One person I spoke with said:

[There is]…no requirements other than to vote on approving or not approving the plan. There is not even a requirement to vote on individual initiatives!

Another person said:

[T]here are some rules–e.g they can’t hold a meeting later than the agenda says. In December, Lyn [Redwood] was calling for people to work into the night, but Insel canned it saying the rules are very clear on that.

But in the matters of voting, re-voting etc everyone was in total agreement. There is no procedure. This puts an instant black mark against the NAA and Safe Minds c;aims and reveals it as an attempt to hype up the situation by using Scare Words.

2) The claim that the CAA specifies vaccine specific language

The NAA say in their press release that:

The committee’s action is in direct opposition to…the Congressional directive of the Combating Autism Act of 2006 (CAA) which specifically called for research into “potential links between vaccines, vaccine components, and autism spectrum disorder.”

This is quite simply not true. Nowhere in the CAA is that sentence used. In fact, nowhere in the CAA do the words ‘vaccine’, ‘vaccination’, ‘immunize’, ‘immunization’, ‘inoculate’, inoculation’, ‘thimerosal’, ‘mmr’ etc appear. Don’t take my word for it. Download the Act and search for yourself. I guess somehow, the NAA made a terribly unfortunate accident and confused the CAA itself with this Senate discussion _about_ the act. A discussion which has no bearing whatsoever on the legal _contents of the Act itself_ .

3) The insinuation that because _they_ voted for vaccine specific research, that they speak for the majority of the autism community

The NAA’s press release quotes a Ms. McIlwain as saying:

It’s no wonder parents around the country are questioning vaccines when government agencies refuse to investigate legitimate vaccine safety concerns

Safe Minds Lyn Redwood said:

“Advocacy groups and legislators have been marginalized in this process.”

As we’ve seen, legislators have not been marginalised. Certain advocacy groups may well have been. Boo-hoo. Its about time we asked ourselves the question: do these co-called advocacy groups actually accurately represent individual opinion?

In the Summer of 2008, the NIMH asked for public comments about the IACC’s Strategic Plan. This was following the NIMH’s Director Tom Insel statement to Lyn Redwood of SafeMinds during the Nov 21st 2008 IACC meeting:

We’ve received public comments on both sides and comments that make it clear that vaccines have no place in this report.

If one visits the public comments page (see link above) and does a search for the word ‘vaccine’, this is what you get:

Out of 148 total responses, 52 (35%) specifically mention vaccines, asking for research. 18 (12%) specifically mention vaccines, asking for the IACC in various ways to discount the vaccine idea. This leaves 78 (53%) who are so uninterested in the vaccine idea they don’t even mention it.

Or, to put it another way, 65% of responders did not ask for vaccine research.

I think this is pretty clear. When 65% of people who are interested enough in autism to respond to a request for public comments don’t ask for vaccine research then the 35% who do cannot claim to be in the majority, or to hold the leading opinion on the matter.

So lets recap. The re-vote was not unprecedented. It did not go against procedure. The CAA does not mention vaccines anywhere in the entirety of the bill. The majority of people who are interested in autism aren’t interested in vaccine research.

← Older Entries
Newer Entries →