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Special fevers, mitochondria and autism

30 Dec

Thats right, its back.

Ginny Hughes, writing for the Simons Foundation writes about new methods of detecting mitochondrial damages that may lead to autism. Of course, since last year that inextricably calls to mind Hannah Poling.

Just as a quick refresh, Hannah’s case was compensated by US Gvmt who accepted that vaccines caused a fever which triggered an underlying mitochondrial dysfunction which in turn led to ‘autism like symptoms’. This is oppose to ‘vaccines caused her autism’ which you’ll find a lot of people claiming.

The crux of the matter is fever. Mitochodrial dysfunction appears to be largely triggered by fever. Without the fever there’s no dysfunction. Without the dysfunction theres no autism.

Jay Gargus, professor of physiology and biophysics at the University of California, Irvine who’s studied mitochodria for 20 years makes a very telling point in this piece:

“It terrifies me that people will be making arguments [from this work] that further enhance the panic about vaccines,” Gargus adds. “Obviously, getting a vaccination will sometimes give you a fever, but the kid’s going to get a fever sooner or later anyway. It’s not like it’s a special fever.”

All kids get ill. They’re going to get fevers. In fact a lot of the things that vaccines try and prevent cause fevers. Flu for example. What vaccines don’t do is give a child a ‘special’ autism causing fever. Thats because there _is_ no special autism causing fever and no special autism causing vaccines either.

Less evolved creatures

29 Dec

Back in of this year, Wired did a piece called ‘An Epidemic of Fear‘ that exposed some of the anti-vaccine charlatans masquerading as purveyors of science that have infested the autism community in the last 10 years or so.

Amy Wallace’s excellent piece (”An Epidemic of Fear,” issue 17.11) isn’t really even about vaccines. It’s about what Thomas Friedman calls the American “dumb as we wanna be” attitude, which combines stunning intellectual laziness, the erroneous concept that all information is equal, and the Internet to create a witches’ brew that we’re using to commit national suicide.

Sadly not just a national malaise, but an international one, Wallace’s piece provoked outraged indignation from those primarily responsible for stirring the Witches brew. The same people that time and again commit the sin of pride as they tell you that they – a handful of business moguls, big titted starlets and antivax lawyers – know as much about the science of vaccination as well, actual scientists who study vaccination and its side effects. Who can forget Jenny McCarthy’s ego-exhortation: her son *is* her science, a course she passed at Google University.

Wired go on to say:

…We got more mail about our cover story, “An Epidemic of Fear,” than any other piece we’ve published. Dozens of medical professionals commended Amy Wallace’s feature on the fallacies promulgated by the anti-vaccine movement. Meanwhile the anti-vaxers flooded our mailboxes with stories of children injured by vaccinations, chain letters, misogynistic rants, threats, and just plain crazytown (”Sodomite editors should go get AIDS at the Folsom Street Fair,” advised one less-evolved creature).

Less evolved creatues permeate the rank, file and leadership of the autism/antivax community. From the creatures that are proud of the baby eating pieces on Age of Autism to the creatures like Dr Sherri Tenpenny who think its OK for kids to die of the flu:

Study these numbers. We’ve had SARS, Bird flu and Swine flu. On average, approx. 190 children/year die from the flu. Considering there are about 62M kids under the 14 years of age in the US, this is NOT “statistically signficant” and should not even make the radar screen.

In 2010, the less evolved creatures should be given less and less weight. Let them carry on making their noises to themselves and we – the autism community – can carry on talking about things that matter.

Autism Personality of the Year

28 Dec

As the year ends the media indulges in lists that attempt to summarize the past and predict the future. So why not add the Autism Personality Of THe Year or APOTHY award, to be made to those who represent the APOTHEOSIS of our movement?

Here are my nominations.

Autistic Person of the Year. Ari Ne’eman for his work in bringing autistic self advocacy to the attention of the White House.

Organization of the Year. The National Autistic Society for its advocacy work in the UK that was epitomized by the passing into law of the Autism Act.

Blogger of the Year.  Sullivan for keeping LBRB going when Kev needed to take a break.

Novel of the Year. The Way Things Look to Me by Roopa Farooki who wrote a better book than The Curious Incident.

Journalist of the Year. Trine Tsouderos and Patricia Callahan for exposing quackery in a series of well researched articles in the Chicago Tribune.

Researcher of the Year. Mady Hornig  for upsetting her fanbase in the anti-vaccine camp by publishing a paper that showed “no relationship between the timing of MMR vaccine and the onset of either GI complaints or autism.”

Event of the Year. Publication of judgements in the Omnibus Autism Proceedings when the vaccine hypothesis was tried and found wanting in the US Court of Federal Claims.

Baseball Team of the Year. The Philadelphia Phillies for honouring Dr Offit. (He also got an award from the American Association of Paediatrics, the President’s Certificate for Outstanding Service but we know which one really matters.)

Shape of things to come. It has to be Square and you will find it at Asperger Square 8.

And any other nominations or categories that you can think of.

Five-percent of nothing

25 Dec

To paraphrase Mark Twain, a phony statistic will travel half way around the world before the truth can get its boots on – and even further when the phony statistic is hitched to the wagon of vaccine denialism.

A case in point: last June, blogger Amy Lutz  launched a broadside against neurodiversity with the following alleged quote:

Dr. (Lee) Wachtel estimates that “less than five percent” of diagnosed autistics have the linguistic and cognitive skills to participate in this movement. “Most are not going to grow up to be Temple Grandin,” she adds, referring to the famous autistic author and doctorate in animal science. On the contrary, Dr. Wachtel believes the average autistic will never go to college or live independently, and instead will struggle his entire life with the communication and social deficits that define the disorder…

Wachtel is a child and adolescent psychiatrist at Baltimore’s Kennedy Krieger Center. Lutz didn’t explain what it means to “participate” in neurodiversity, nor did she reflect on the fact that most kids don’t grow up to be Temple Grandin anyway. “This article by Lutz … has the appearance of journalism, and quotes a doctor in support of Lutz’s contention that neurodiversity is a bad thing, overall,” notes autism blogger Kim at CounteringAgeOfAutism, who tracked down the source of Wachtel’s alleged quote. “It doesn’t help that Lutz doesn’t seems to understand what neurodiversity is.”

Lutz’s post raised a few eyebrows. Commenter Jen Niebler wrote ND is not about “marginalizing the ‘real autistics’ – it’s about listening to all autistics and how they wish to be treated.” LBRB founder Kevin Leitch commented “A total misrepresentation of the ND viewpoint who (as I am one, and parent to a severely autistic child I am very aware of this) consider autism a disability AND a difference. Did the author talk to anyone from the ND community before writing this?”

Eventually Wachtel’s quote faded into the ether, only to be resurrected six months later in a comment at about.com, where blogger Lisa Jo Rudy worried that Ari Ne’eman’s recent nomination to the Council on Disability might not sit well with the anti-vaccine crowd. Commenter LoopyLoo wrote:

I’m frustrated and worried. High-functioning, highly verbal people with autism have just about zero in common with my severely impaired, non-verbal child. I’m glad that things have worked out so well for him, but in the general population of people with autism only about five percent will ever be able to participate in a movement like neuro-diversity. Acceptance of/for people who aren’t NT is a fine and lovely goal, but I’d rather have a cure.

When asked to source the “five percent” figure, LoopyLoo pointed to Wachtel. But a query to KK’s media relations office tells the rest of the story:

Regarding Dr. Wachtel’s quote, her comments were pulled from a conversation that she had with a parent. She wasn’t aware that they would appear on a large web site as was the result. Her comments were also made relative to the severely impaired patient population that she sees. The majority of these patients can be described as she did in her comments, but the full context of the discussion would include mention of the fact that advances are happening in the field of early intervention which may change outcomes for toddlers who are being newly diagnosed today at age two or earlier. Also – she does not have a citation or reference for the “less than 5 percent” reference. Again – it was a casual comment made to a parent, and within the context of her patient population.

In a follow up email, KK characterized Wachtel’s words as “casual comments made relative to Dr. Wachtel’s daily frame of reference – her severely affected patient population.” In other words, the five percent figure does not refer to all autism spectrum disorders.

The blogger, Amy Lutz, confirms the quote came from her private conversation with Wachtel, and she stands by it. “I asked Dr. Wachtel to approximate, based on her seven years of work in autism treatment and research, the percentage of diagnosed autistics who could actively participate in a political movement – because, as we all agree, there is (sic) no data in the scientific literature to answer this question,” said Lutz in an email. “Her answer, five percent, is, as I explicitly stated in my essay, an ‘estimate.'”

In a perfect world, a throwaway quote by a careless writer wouldn’t matter. But in our wired, interconnected world, poorly sourced quotes are sustenance for ideologues.

The premise here – that only the highest functioning autistics can “participate” in neurodiveristy –   would be news to many of the pro-ND bloggers who are significantly disabled, notes autism blogger Sullivan. “The fact of the matter is that everyone (autistic/non-autistic, all levels of disability) benefit from neurodiversity.”

As anti-vaccine activists and other line up to oppose Ari Ne’eman’s nomination, we are sure to see more inaccurate and self-serving definitions of neurodiveristy. And it’s a safe bet that the “five-percent” quote will surface yet again.

My “hostile” or “threatening” messages to the Age of Autism editors

23 Dec

I’m critical of the Age of Autism blog and their so called “editors”. That comes as no news to anyone who has read this blog, I’m sure. But I found an odd bit in David N. Brown’s recent piece, Paul Offit’s Mythical Millions (v. 2), when he noted that Mr. Mark Blaxill and Mr. Dan Olmsted wrote in a recent Age of Autism piece:

Most notably, we have received hostile (and in one case threatening) messages from readers who take issue with our estimates

I sent email messages to Mr. Blaxill and Mr. Olmsted, pointing out their mistakes. Hostile and threatening were not the way I would characterize the emails, so I emailed Mr. Blaxill and Mr. Olmsted with my request for clarification of their comments. They have not responded, which I am taking as confirmation that they considered my communications “hostile” and/or “threatening”. I thought I would let the readers decide whether based on the actual messages below.

As a bit of a backstory, Mr. Olmsted and Mr. Blaxill wrote a piece where they estimated the amount of money Dr. Paul Offit earned from his share of his vaccine patents. In this piece, they made a number of errors. I pointed out some of the errors, errors that were easily confirmed with publicly available information, via email.

I thought I had phrased this in a non “threatening” and non “hostile” manner. Again, I leave it to you, the reader, to decide.

Here is my initial letter to Mark Blaxill and Dan Olmsted, editors at the Age of Autism blog.

Mr. Olmsted, Mr. Blaxill,

I am sure you are interested in accuracy whenever possible in your blog posts. I assume you want to know and want to correct errors.

In a recent post of yours, you estimated the royalty payment for Dr. Paul Offit from CHOP’s sale of it’s rights to the rotavirus vaccine Dr. Offit, Dr. Plotkin and Dr. Clark invented.

Your post makes an estimate that is markedly higher than the real number. This is in large part to two errors you made.

First, the Patent and Intellectual Property Policy you used is incorrect. You rightly note that this is a new policy and that the rotavirus patent was likely covered by a previous policy.

The details of the previous policy are included in this document (http://stokes.chop.edu/forms/btob/Jan07BtoB.pdf) , which can be easily found with the following google search:

Patent and Intellectual Property Policy site:chop.edu

Using the older policy and the $182M reported as the payment CHOP received for their patent, you can calculate an inventors share of $18,550,000.

The second mistake in your estimation is in assuming that Dr. Plotkin and Dr. Clark. did not share in the CHOP inventor share. This is incorrect. Again, a quick google search will demonstrate that Dr. Plotkin and Dr. Clark were, indeed, CHOP faculty. Therefore, the $18,550,000 is divided by 3, resulting in an inventor share of $6,183,333.

The CHOP 2006 annual report (http://stokes.chop.edu/publications/annual_report/pdf/annual_report_2006.pdf page 42) clearly states that Dr. Plotkin and Dr. Plotkin were part of the CHOP team that invented the vaccine. Other pages on the CHOP site note that Doctors Plotkin and Clark were, indeed, faculty there.

I have already emailed Dr. Offit to check that this is an accurate representation of the facts, and he confirmed this.

I look forward to seeing how you make use of these corrections.

Mr. Blaxill reponds:

Dear Sullivan,

Please identify yourself. I do not respond to unsigned communications.

Sincerely,

Mark Blaxill

Sullivan:

Mr. Blaxill,

I realize that this is your policy and I respect that. I apologize for contacting you like this, but I felt it important that you have accurate information in this case. The links I supplied confirm this. That information is independent of whether I sign or do not sign my email.

I believe your mistake to be an honest one. At the same time I believe it was easily avoided as accurate information is readily and publicly available. Note that I made a conservative estimate, using the full $182M of the Royalty Pharma payment, not the $153M you report as net income from CHOP’s sale.

I respect your policy and I was not and am not looking for a response. I do hope that you will act on the information provided.

Mr. Blaxill:

Dear “Sullivan”,

Your information is interesting but equivocal. I have information that goes in the other direction. More to the point, we asked both Offit and CHOP to comment on the story before publication and they declined. The only definitive way to resolve the ambiguity is full disclosure of the amounts Offit received from all sources and he has declined to do so. So we have no plans at the moment to act on this or any other new information, which at the most amounts to a distinction without a difference. The conclusion stands: Rotateq made Offit a millionaire.

In the meantime, you continue to hide behind an anonymous email address. You must understand that discredits you as a source.

Sincerely,

Mark Blaxill

Sullivan

Dr. Offit has publicly stated how much he was paid by CHOP.

http://counteringageofautism.blogspot.com/2009/09/paul-offit-explains-money-side-of.html

A blogger contacted Dr. Offit and Dr. Offit responded. The blogger (David N. Brown) used his real name in reporting the information. No different than had he responded to you and you had included that information in your blog under your name.

Were you both unaware of that blog and that post?

Will you make the correction now?

Mr. Olmsted and Mr. Blaxill did not make the correction. The recently admitted their mistakes, but have yet to make the correction.

Upon reading the comment that they had received “hostile” and “threatening” responses, I decided to inquire as to whether they were referring to the exchange above. Below is my final email in this exchange.

Mr. Olmsted, Mr. Blaxill:

In reading David Brown’s discussion of your recent blog post on Dr Offit, I found this comment: ” Most notably, we have received hostile (and in one case threatening) messages from readers who take issue with our estimates. ”

I would like to know if you include this exchange as either hostile or threatening.

I thank you for your time.

This has remained unanswered. I take this as a strong indication that, yes, they considered my discussion “hostile” or “threatening”.

Frankly, I believe either clarification or an apology are in order from Mr. Blaxill and Mr. Olmsted as the above discussion was quite respectful. Do I expect that? No. I don’t expect such behavior from people who would write the passage below:

“The only definitive way to resolve the ambiguity is full disclosure of the amounts Offit received from all sources and he has declined to do so. So we have no plans at the moment to act on this or any other new information, which at the most amounts to a distinction without a difference. “

The message was clear to me: the blog post would remain uncorrected unless Dr. Offit met their demands. The fact that Mr. Olmsted and Mr. Blaxill were clearly mistaken had no bearing on whether the piece would remain. Note that even though they have admitted their mistake, no mention is made in their original post to this day.

I started the above communication with the assumption that Mr. Blaxill and Mr. Olmsted were honorable people who, while we disagree, would put accuracy above smear.

I am willing to admit my mistake.

Ari Ne’eman on disability

23 Dec

There is a myth that is spreading around the internet. The myth that neurodiversity means denying that autism is a disability. I see this over and over on this blog in the comments. I see it elsewhere in blogs that put truth second to promoting their messages. I have assumed that most people see the myth for what it is and disregard the comments of the uninformed or the misinformationists.

So you can imagine that was quite dismayed to see the myth be repeated by Lisa Jo Rudy on the autism.about.com blog.

Ari Ne’eman is the founder of the Autism Self-Advocacy Network (ASAN) and a well-known activist on behalf of the rights of individuals on the autism spectrum. He’s also a controversial figure because of his views on “neurodiversity” – the perspective that autism is just one of many different ways of thinking, rather than a disability or disease to be cured.

I don’t think she was trying to discredit Mr. Ne’eman, she was just passing along what she had read. Ms. Rudy was kind enough to post a message that Mr. Ne’eman sent, correcting the misconception:

Correction: Ari Ne’eman writes to say: I have never claimed autism is not a disability – in fact, I worked to pass the ADA Amendments Act, to ensure that it would be considered as such under the ADA. The claim that I or ASAN’s advocates don’t consider autism a disability is an unfortunate myth, which I’d appreciate if you could correct

I think a few more comments by Mr. Ne’eman are worth noting. This one from the Cat in a Dog’s World blog.

“As for the comment made about my Jewish Week article, I don’t recall saying at any point there that autism wasn’t a disability – only that it was not a disease, something I think exemplifies the neurodiversity position much better. I did seem to imply it though with the phrase “difference is not disability”. Though the phrase is technically true, I shouldn’t have phrased it that way. I was wrong to do so – and if that is the worst mistake I’ve made or ever will make in print, I’ll count myself lucky. Fortunately, I have years of advocacy work and public statements that show my work in the Disability Rights movement as a person with a disability.

So let me be clear now – Asperger’s and the broader autism spectrum are disabilities. I know this not just from personal experience but because I helped pass the law that reinforced this as the case – the ADA Amendments Act, which re-established a broad definition of disability under the ADA after a decade of judicial narrowing that drove even significant intellectual disability out of the law’s coverage, much more so the vast majority of the autism spectrum.

It was one of the first things I had the pleasure of doing when I got involved in Washington. Here’s the press release from when we announced the compromise brokered with the business community:http://www.civilrights.org/press/2008/employers-and-disability.html It comes from the Leadership Conference on Civil Rights, a group that I consider it an honor to have had the opportunity to work with both during the ADA Amendments effort and the more recent advocacy push around health care reform. We have a long way to go in building our community, but I’m really heartened that we’re being welcomed by the cross-disability and civil rights communities. It’s a good sign about our movement’s future.”

Many people spreading this myth rely on a comment Mr. Ne’eman made when he was seventeen years old.

We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not, in itself, disability; it becomes disability when it is not properly understood and accommodated. Someday, I hope the world will recognize that those who think in different ways should be welcomed.

Difference is not, in itself, disability….

That is not the same thing as saying that autism is not a disability, not at all.

The odd thing, when people quote that paragraph, they tend to leave the final line off: “Someday, I hope the world will recognize that those who think in different ways should be welcomed.”

Mr. Ne’eman contributed testimony in support of the ADA (Americans with Disabilities Act) Amendments Act, or ADAAA, being one of many thanked in the Congressional Record:

“Finally, at the risk of leaving out some individuals, we want to recognize some of the additional countless individuals who helped with educating Members of Congress, doing important coalition and media work, and providing legal input on the bill as it progressed through Congress, from its first stages through the final vote today

One need only spend a short time on the Autistic Self Advocacy Network’s website to find many statements by Mr. Ne’eman and others clearly showing that ASAN members recognize autism–as in all the autism spectrum disorders–as a disability.

Mr. Ne’eman and ASAN also worked on recent legislation to limit seclusions and restraints in schools.

I am curious as to how people reconcile the myth that Mr. Ne’eman doesn’t consider autism as a disability with his efforts in the disability community?

From what I am reading on the net lately, people are now considering the recognition of autism as a disability as something new for Mr. Ne’eman. The Congressional Record I cited above is from 2008. Of course, one could notice that in his 2006 [correction note, I mistakenly put 1996 here originally] essay, the same one that is used to paint him as denying the disability inherent in autism, Mr. Ne’eman refers to his own experiences within special education.

Unfortunately I don’t think things will change much for Mr. Ne’eman. His detractors are not prone to admitting mistakes. I don’t expect them to make much inroads in derailing Mr. Ne’eman’s nomination to the National Council on Disabilities, either. It is one thing to spread misinformation on the internet. It is another thing entirely to convince people who have seen Mr. Ne’eman working within the disability advocacy community.

Paul Offit’s Mythical Millions (v. 2)

22 Dec

This is a PUBLIC DOMAIN document (dated 12/11/09, revised 12/12). It may be copied, forwarded, cited, circulated or posted elsewhere. The author requests only that it not be altered from its current form.

Breaking news: Dan Olmsted and AoA have finally admitted that CHOP paid Paul Offit $6 million, not $29M, $45 or $55M, for the Rotateq patent.
So why isn’t the Evil Possum sneering and laughing a single “HAH!” of contempt as he surveys the smoking wreckage and broken bodies of his enemies?

Because, the “correction” was embedded in another hate piece against Paul Offit, “Counting Offit’s Millions.” Here are some of the things Olmsted has to say to rationalize his earlier incompetence and/or dishonesty, and justify further suspicions against Paul Offit, and what I have to say in reply:

“Our new estimate of Offit’s total profit of $13-35 million through 2019, overlaps the range of our original estimate of $29-55 million. Both those estimates exceed Offit’s recent — and apparently partial — disclosure that he made `about 6 million.'”

I object strongly to the reference to this statement as “recent”. I posted it on “Evil Possum” (See “Offit’s Mythical Millions (v. 2)” back on August 18. I would also remind everyone of Dr. Offit’s statement to me: “CHOP sold its patent for $182 million. This information was made publicly available and was published in the Philadelphia Inquirer at the time. The inventors, Fred Clark, Stan Plotkin, and me split 10 percent of that three ways. This means that we each received about $6 million.” As we shall see, AoA is not trying to dispute this. They are arguing that he received more money from other sources. Fair enough, but that does not make his disclosure “partial”. It should be clear from context that Offit is disclosing the amount he was paid from the CHOP inventor’s share.

“Offit’s recent revelations do little to change our conclusion, that he was `voting himself rich’ while sitting on a government vaccine standards body.”

This “conclusion” would make no sense even if their original “estimate” were correct. From the standpoint of ca. 1999, even in the event of the recommendation of rotavirus vaccination the eventual development of Offit’s own patent into a commercial product was uncertain at best and improbable at worst. So, as long as the charge is intentionally using his position to pursue anticipated monetary gain, accusers don’t have a leg to stand on. It should also be noted that they have not offered any evidence that Offit made a single decisive vote on the issue.

“Based on two crucial new disclosures from Offit, we estimate in a revised and more detailed analysis that Offit has received and will continue to receive multiple payments based on Rotateq® licensing revenue, that he may already have earned $10 million from Rotateq® and that he stands to earn between $13-35 million over the lifetime of Rotateq’s key patents (based on different assumptions regarding the product’s future worldwide sales forecasts).”

At this point, any sensible person should be thinking, “Consider the source…” When Olmsted was working from figures and other facts that could easily be established from a few public records, he came up with a “minimum” of $30M for a payment whose actual amount was $6M. He also seems to have overlooked such basic things as the prominent listing of CHOP on Clark’s and Plotkin’s resumes and a clear statement in the CHOP document used as a “source” that a policy was not applicable to patents disclosed before July 1, 2005. So why should anyone put much trust in what he has to say on more complex issues, especially market projections?

“(Paul Offit) has thrust himself into the spotlight as both a vaccine safety authority and an autism expert, spokesman roles that have little to do with his work on Rotateq®. “

This is an entirely frivolous criticism. It cannot seriously be disputed that he is a “vaccine expert”. As for the label of “autism expert”, that is not a label Offit has applied to himself. The only place I personally have seen it applied it to him is in the sarcastic headline of an October 26 AOA post.

“Most notably, we have received hostile (and in one case threatening) messages from readers who take issue with our estimates. Although these threats have concerned us, they have also been a useful source of new information, the full implications of which our critics had clearly not grasped.”

I think it is not improbable that this is directed against me; in another instance, I have been referred to by name as “abusive”. In the interests of completeness, here is the text of a private email sent to Mark Blaxill: “I have attempted several times to post additional comments on article `Voting himself Rich’. I recognize that I have allowed the tone to get overly harsh, and I would rather discuss this in a private discussion, before posting my own work in progress… If you have any response or emendation to offer, I will duly note it in any public posting. But your previous report and response, as such, cannot stand.” So, what in this is “threatening”?

“(W)e have been unable to fully explain the $29 million difference between Royalty Pharma’s reported payment ($182 million) for CHOP’s royalty interest and CHOP’s reported proceeds ($153 million) from the monetization of its royalty rights.”

This is a decidedly frivolous aside, unless Olmsted wishes to imply that Offit’s disclosure regarding the CHOP sale is incomplete. By this point, any remaining “mystery” is on par with “What happened to Jimmy Hoffa?”: What we don’t know, can easily be guessed! It is reasonable to suppose about $18.5M was paid to the inventors. As for the other $10.5M, that could be accounted for by any number of things. Filing a patent costs money. Arranging the sale of a valuable intellectual property costs a lot of money. I attempted to explain the inevitable expenses in one of the few posts that were not censored by AoA: “I’m sure the 29M would include payments to others; for example, a 15% fee is typical from inventors’ royalties.” It should have been clear that I was no longer just discussing the inventor’s share, but also the presumable expenses related to the patent and sale. A reply by Mark Blaxill completely failed to acknowledge the issue: “David Brown, please read the article before making incorrect statements… Offit would have received the entirety of the CHOP inventor’s share.” Olmsted’s continued display of bafflement likewise shows a failure to apprehend (or openly acknowledge) just how far the claims of the original article were from what was known or even plausible.

“Based on the current CHOP policy, it is clear that such private arrangements between inventors are anticipated. `If there is only one such Inventor, Author, or other creator, the total Inventor Share is payable to that person’ reads the `Patent and Intellectual Property Policy” from CHOP’s Administrative Policy Manual. But `where there is more than one such Inventor, Author, or other creator, and all such persons unanimously agree in writing how the Net Income should be distributed among them … then the Net Income will distributed in accordance with such agreement.‘ According to Offit, he, Clark and Plotkin reached a private agreement to share the inventor proceeds, which resulted in a three way split of the inventor distribution.” (Underlining added)

This passage caught my attention because it seemed eerily familiar, and not just because I had read it in the CHOP patent policy manual. Just now, I was checking on my first draft (no longer online) of “Offit’s Mythical Millions”: “CHOP’s manual, cited by Blaxill and Olmstead, makes the following statements: `The Inventor Share… is the total amount payable to all Hospital Personnel who are Inventors, Authors, or other creators of the Intellectual Property… Where there is more than one such Inventor, Author, or other creator, and all such persons unanimously agree in writing how the Net Income should be distributed among them… then the Net Income will distributed in accordance with such agreement… (If) all such persons have not unanimously agreed on the distribution… then the IPA, or his/her designee, will determine an appropriate allocation of Net Income among the Inventors, Authors, or other creators… Each Inventor, Author, or other creator will be entitled to receive his/her Inventor Share of Net Income in accordance with this policy whether or not he/she remains Hospital Personnel. In the event of the death of an Inventor, Author, or other creator, such Net Income will be paid to his/her estate.’ (All italics added.)… It is also clearly the hospital’s intent that coworkers settle the issue among themselves. The implication is that the division of the share among a team would be negotiated among the team as a whole, with a reasonable balance of bargaining power even between a leader and his subordinates.” (Underlining new.)

Given the degree of similarity between their quotes and mine, I think it is very possible (I won’t go so far as to say probable) that their quote of the CHOP document is simply copied and pasted from mine. And that raises some question in my mind whether Olmsted (and Blaxill) have ever gone to the trouble of reading their “source” with any care. Then there is the remark that follows, which looks to me very much like what I suggested in the first draft of “Mythical Millions”. My correspondence with Offit on the matter convinced me otherwise, which was why I replaced that document.

“But if Offit shared the Royalty Pharma proceeds with Plotkin and Clark, then Offit would also stand to receive a share of any Rotateq® related payments made to Wistar, payments we did not attribute to him previously and that he has not disclosed.”

This is a reasonable conclusion, but an unacceptable argument. The reason Plotkin and Clark were eligible for payment from the CHOP share is that they both were present or former employees of the hospital. For the same argument to apply to Offit and the Wistar payment, it must be shown that he is or was a Wistar employee. As it happens, he is (a fact which I was aware of back in August). But, Olmsted has not gone to the minimal effort of establishing this fact, nor has he shown that he understands why he was in error in the first place.

“His claim of a 10% inventor distribution for Rotateq® is supported by a document we received from a critic of our analysis: a January 2007 newsletter from CHOP call `Bench to Bedside.’”

I will add a significant detail: I mentioned this document in the first draft of “Mythical Millions”, and gave Blaxill notice of what I intended to publish on August 10.

“Offit has now publicly disclosed both of these terms (a disclosure that Age of Autism Contributing Editor Jake Crosby confirmed in direct correspondence with Offit).”

This immediately reminded me of one of Crosby’s periodic visits to Left Brain/Right Brain. On September 14, he left this confrontational “comment”: “When did Paul Offit receive the royalty payments for the Rotavirus vaccine? It was added to the schedule in February 2006, but the new patent code went into regulation in November 2006. If Paul Offit’s vaccine was added to the schedule in early 2006, but received payment in late 2006 (either November or December), or beyond, then he would have received inventor’s share of the money according to the current patent policies of CHOP.

Also, how would Drs. Clark and Plotkin receive CHOP inventor’s share of the vaccine when they already received some through Wistar and no longer work at the hospital, and only Paul Offit does? That does not seem to make sense.” He did not offer any further comments or questions in response to detailed explanations. I mention this because it is indicative of how slow and recalcitrant AoA has been in retracting their original article: Nearly a month after I posted Offit’s statement, it appears that even a major member of the AoA staff was either wholly unaware of the correction or not yet fully informed of the extent to which the original story had been shown to be in error.

But even this revised lump sum estimate likely understates Offit’s total return from the CHOP royalty streams. According to the announced payment terms, Royalty Pharma only purchased the rights to CHOP’s royalty stream “from and after October 1, 2007.” Based on its quarterly financial statements, Merck reported Rotateq ® sales of $537 million before that date. If CHOP retained the royalty rights to Merck revenues before that date, then Offit could have received royalty payments directly from CHOP based on Merck’s early Rotateq® revenues in addition to the lump sum payment he received based on the Royalty Pharma transaction…

This is an odd tangent. If Olmsted thinks that Offit received a significant amount of money from this transaction, why doesn’t he give an amount? For that matter, why doesn’t he mention this after providing some suggestions as to calculate royalties? This immediately raised my suspicion that, as in the inclusion of $55M in the original piece (see “18/3=29”), Olmsted has put forward a claim he knows is improbable at best, to lead readers to draw erroneous conclusions.

As it happens, Olmsted suggests later (see below) that the royalties to the hospital(s) would have been 2.5%. If that is applied here, the hospital would have received $13.5M. Based on the complex policy in place in ca. 2000, the inventor’s share would be $200,000 for the first $500K, $675,000 up to $5M, and $850,000 for the rest, for a total of $1.725M, or $575K per inventor. Or, so it would seem. For 2006, matters seem straightforward. Olmsted reports that there were $163M in sales for Rotateq before the end of the year, which comes out as $4M for the hospital and $242K for each inventor. But what about 2007, which is when the greater part of the royalty would come into play? That would depend on the terms on which payments were made. If CHOP had received a royalty payment for each quarter, then the institution would have pocketed the royalties up to October. But if the royalty was an annual payment, it appears quite possible that, in making the sale, CHOP forfeited all royalties for 2007. Needless to say, I consider the second possibility more likely.

“Wistar’s immediate receipt of $45 million was subject to the same inventor distribution requirements as the CHOP transaction. So just as Offit received a share of the CHOP inventor distribution, the Wistar deal created an occasion for a second lump-sum payment. According to the “Guidelines for Wistar inventors”. Offit would have received 5% of the Paul Capital proceeds, or $2.25 million … In his recent disclosures regarding his CHOP payment of $6 million, Offit has consistently neglected to mention that he received another seven-figure payment from Wistar a few months before. Adding these payments together gives Offit a total of $8.4 million from lump sum payments alone.

I mention this to point out that (contrary to what Olmsted seems to believe) none of this is news to me. As already mentioned, I was aware of Offit’s employment at Wistar around the time I contacted him for comment on his CHOP share. If he didn’t tell me his income from other sources, I will grant that, given the opportunity, I chose not to ask. Also, to the best of my recollection ,I had at that point taken a look at the Wistar policies, and come up with a figure in the neighborhood of of $7M for the inventor’s share. If I had chosen, I could have suggested the same figure Olmsted is presenting now. I had little reason to go to the trouble. For one thing, Olmsted had placed the focus on the CHOP share. For another, he had so preposterously inflated Offit’s income that two million or so either way would make no difference in judging the the credibility of his “reporting”. As far as I’m concerned, it still doesn’t.

“(I)n order for Paul Capital to be willing to pay $45 million for a 13 year royalty stream between 2006 and 2019, we calculate that Wistar’s royalties on the first $300 million in Rotateq® revenues would need to fall somewhere between $6-9 million per year, depending on the discount rate Paul Capital applied to the future royalties… This calculation would mean that Wistar has a royalty rate somewhere in the 2-3% range. For simplicity’s sake, we have assumed that Wistar’s actual royalty is 2.5%, which after adding an equal amount for the CHOP license brings Merck’s total royalty for its Rotateq® patent license to 5%.”

This whole passage is far from convincing. It is clear that what is “calculated” is based on a series of assumptions, of which the first- “for Paul Capital to be willing to pay $45 million for a 13 year royalty stream… Wistar’s royalties on the first $300 million in Rotateq® revenues would need to fall somewhere between $6-9 million per year”- is clearly the most questionable. How does one know what businessmen would be “willing to pay”, unless either a) one is telepathic or b) the businessman can see the future? It’s not at all clear to me how Olmsted came up with his figure.

Rather than try to sort out his calculations (in which he has given me no reason for confidence), I will do my own math. $45 million divided by 13 is $3.46M, or 1.15% of $300 million. It can be assumed on this basis that royalties were more than 1.15% , because Paul Capital would have had no chance of making a profit otherwise. But, if it were that much more, it is more likely Wistar would not have sold. So, I will settle for 2%, which would have given Paul Capital the chance of almost double return and allowed them to break even by the time sales hit the $150M mark. A 5% inventor’s share (1/3 of 15%) would come out at 0.1% of gross minus $300M.

In this scenario, in 2008, when gross Rotateq sales reached $665M, Offit and associates would have received $365,000. This doesn’t come close to justifying Olmsted’s figures. As noted, his claim at the start was that Offit has made $10M from Rotateq, which since he estimates lump sums to be $8.4M would mean $1.6 million, over 3 years, or on average $533,333 per year. My calculation for 2008 provides only 68%, and that is so far the peak for Rotateq sales. Moving up the percentage is little help: At 2.5%,, the royalties come out at $456,000 for 2008, which is 70K short. Even at 3%, I come up with $547,500 to Offit, which is only barely more than what Olmsted requires. So how is it that Olmsted has arrived at an “average” of $533K per year, when applying the royalties percentage he claims to have used to the highest sales on record falls short by about 14%?

That brings us to the final sentence of the passage, which I can only regard as an outright lie. Now, Olmstead previously suggests that Offit received royalties on Rotateq sales through ca. Q3 2007, on grounds which seem plausible. But that is not what Olmstead appears to be saying. Instead, he gives every indication of saying (briefly and offhandedly) that Offit is receiving ongoing income from both Wistar and CHOP. There is absolutely no chance that this is true, or even what Olmstead believes to be true. He repeatedly states, in this very article, that any current income to Offit can only come from Wistar. That he seems explicitly to say otherwise here cannot be excused as mere “error”. Witness the next item…

“(W)e estimate that Offit receives an eighth of a cent (or .125%) for every dollar of Merck’s Rotateq® revenue above $300 million If Rotateq® performs well, it can generate a large annual income for Offit: a relationship we have illustrated graphically in Figure 1.”

Year Q1 Q2 Q3 Q4 Total/300 Royalty
2007 85 119 171 149 224 $280,000
2008 190 178 134 162 364 $455,000
2009 134 126 127 120* 207 $258,750
Total $993,000

*Estimate by the author, minimum

It is clear from the chart that Olmsted’s “estimate” has no basis even in his own data. Even the 2008 “spike” falls $78K short of the $533K per year necessary to add up to the $1.6M that Olmsted implies. The sum of them all is only 62% of that figure. (Even granting his doubtful claim of CHOP royalty payments through Q3 2007 won’t quite get to $1.6M without rounding.) The only readily apparent means by which Olmsted could have come up with that, based on ongoing royalties alone, is by assuming two sources of such income, ie by adding CHOP payments which he has admitted do not exist. In summary, it is again proved absolutely impossible that Olmstead could have arrived at in the methods he describes. Furthermore, if he did not necessarily lie in producing the first story, it cannot be doubted that he is doing so in this one. I will grant him the benefit of one doubt: It is possible that the untenable figures precede the apparent “miscalculations”, and that the former were foisted onto him by another, possibly with initials of H, B and J, not necessarily in that order.

That brings us to the graph, which can be traced to what appears to be a protected site created by Generation Rescue, and kept disappearing or getting messed up when I tried to include it here. To the extent that I am able to analyze it (a task which required magnification, a printout and a ruler), I must admit its figures are less objectionable than Olmsted’s. At the least, it is clear enough (when the graph is examined closely enough!) that Offit’s annual royalty would not reach or exceed $500K until around $750M in gross sales. (By Olmsted’s math, the royalties on $750M would be $562,500.) But that is more than nullified by the extravagant scale assumed. Based on available fiscal data, it can be predicted reasonably that Rotateq sales will remain stable at around $500M per year. But the anonymous graph maker saw fit to illustrate Offit’s royalties on sales up to $3.5 billion.

After this, the only remaining question is why, after four months of denial, silence, censorship and the occasional insult, AoA is finally making a “correction” now. It certainly is not to convince me or those in the communities of which I am a part. If they cared about what we had to say, they would have issued corrections a long time ago. The only intelligible interpretation is that this is a “rear guard” action, and a sign that even loyal AoA members, perhaps even some of their leaders, are growing tired of this “story” and/or “anti-Offit” tactics in general. I suspect that the role of Olmsted in particular has been to stall, waiting either for criticism to die down or to perfect exactly what he has finally done: create a story which would admit his previous error(s) while allowing himself to “save face” before his loyal followers. In that event, I have only one thing left to say to Olmsted: This is the best you could do??!
And the Possum just says, “HAH!”

David N. Brown is a semipro author, diagnosed with Asperger’s Syndrome as an adult. Previous works include the novels The Worlds of Naughtenny Moore, Walking Dead and Aliens Vs Exotroopers, and the nonfiction ebook The Urban Legend of Vaccine-Caused Autism. This and other articles related to autism are available free of charge at evilpossum.weebly.com

Kim Peek has passed on

22 Dec

I was literally just about to write a post referencing Kim Peek when I found this story on the news: Father says Kim Peek, Utah man who inspired Dustin Hoffman’s ‘Rain Man’ character, dies at 58.

Kim Peek was a savant. He was the inspiration for the character Dustin Hoffman played in the movie “Rain Man”. This movie was and likely still is what many outside the autism communities think of when the hear the word “autism”. Interestingly, Mr. Peek was not autistic as such, but had a condition called “Agenesis of the Corpus Callosum” or ACC.

I tried to contact Mr. Peek earlier in the year for an interview on LBRB.

Here are some videos about the man.

I’ve been thinking a lot about Mr. Peek. I was actually worried that Mr. Peek’s father may have passed on. Kim Peek was very dependent on his father.

I wish Fran Peek well in getting past the loss of a child he obviously loved and who brought him joy. Episode 5 in the above series shows some of the relationship between father and son.

“My father and I share the same shadow” –Kim Peek

Tom Insel lets himself down

21 Dec

I was saddened to see a recent interview given by Tom Insel to the Age of Autism blog. Maybe he’s not a regular reader of that blog where his fellow scientst Paul Offit is regularly castigated in such personal and violent ways. Or maybe he is and doesn;t care. However the impression I get from Insel is that he’s a weak man who will say whatever it is the person he’s talking to wants to hear.

He certainly did this during his interview with David with statements as bizarre as:

As far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected…

In fact the oonly really accurate statement I found during David’s published highlights with Insel was Insel’s statement that:

I think I am arguing, probably, against the wave of the people that are in this field…

which is most definitely the truth. I can’t think of an autism epidemiology expert that has come out and said that there is definitely or definitely not an ‘epidemic’ of autism. And why? Because the science doesn’t exist.

Insel also seems to be infering that most people in the field believe there is one entity called ‘autism’ which is most certainly not true. A simple comparison between Rhett syndrome and all other known forms of autism would clearly show more than one type of autism. Insel doesn;t name names but I am at a loss to think of anyone else in the field who considers autism to be one entity.

He goes on to say that he finds it ‘believable’ that children can develop autism in the context of severe gut problems. Well, good for him. But ‘believable’ is not the same thing as ‘established’ or even ‘hypothetical’. Its one persons opinion.

All in all, this interview added little (if anything) to what we know about autism. But it did allow us to see Tom Insel in a certain light. Not a very good once in my opinion.

So, what is autism, culturally?

20 Dec

To some autism is a disability. To some autism is a difference. To most, including me, I’m betting its both. Its not always bad, its not always good. It leaves some people virtually unable to communicate in an NT world and it increases other peoples intellectual ability to the point of near genius.

Some see it as a gift, and others as a curse. Some, including me, see it as neither but as simply something that is. Like the colour brown, or the shape of a circle it exists above others perceptions and therefore is amoral as oppose to moral or immoral.

Some see it as something that needs research into its origins. Others see it as something that needs research into how it can be stopped. Some, including me, see it as something that needs research into how best we support autistic people as they become – and continue to be – adults. How we help them with housing, employment, education etc.

Some people would be shocked that others don’t see research into a cure as the number one priority – or even as a priority at all – and others would be shocked that others don’t seem able to see autism as anything but a state that medically affects children.

As we enter the last year of the first decade of the new millenium, the question needs to be asked: where do we go from here?