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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

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.

Is CDC to announce 1 in 100 autism rate?

18 Dec

And, if so, is SafeMinds trying to play games with Google news to get their story on top?

What happens when you are the first to break a big news story, at least in terms of Google News? Well, quite often your story gets to be the top story.

On Wednesday, SafeMinds put a piece on the Age of Autism Blog CDC Study Expected to Announce 1 in 100 Autism Rate—A Startling 50% Jump in Just Two Years. Evidence Points to an Environmental Trigger. Then, on Thursday, basically the same piece reappeared as CDC Brings Bad Tidings: 40,000 Children Diagnosed With Autism In This Year Alone. They open with:

Atlanta, GA – A study to be released Friday by the Autism and Developmental Disabilities Monitoring (ADDM) Network of the Centers for Disease Control (CDC) is expected to report that autism prevalence has reached the epidemic rate of 1 in 100 children.

Usually when a new study comes out, journals or the CDC will release some information to the press on the condition that they respect the “embargo”. That is, everyone is supposed to wait until the same time before going public with the information.

There are advantages to not playing by the rules. When you get your story out first, especially on a big story, you can try to influence other stories and you can ride the top of the wave of press coverage.

Take a look at Google News for a big story and often there is a “lead” or top story. No one wants to be burried in the mass of stories. Get your story out first, and, hey, maybe you will be the top story.

That would be a big public relations coup for SafeMinds. At the same time, we have to ask: if SafeMinds is correct, are they breaking an embargo? The release of information about a recent Pediatrics study claiming a 1% autism prevalence caused some bad press for the autism community (also here and here).

Let’s watch. Will SafeMinds put out yet another post Friday morning, just in case? Will they succeed in getting a prominent spot for their pieces? Will journalists covering the story contact SafeMinds or use their material for stories?

The CDC autism prevalence estimates are made via MMWR’s (Morbidity and Mortality Weekly Reports). The previous report was from 2007, using data collected in 2002, with the 1 in 150 prevalence estimate that has been commonly quoted.

If you recall, the existence of the upcoming MMWR was leaked a few months ago. Lee Grossman, president of the Autism Society of America, somehow found out and talked publicly, and David Kirby blogged it. Of course, Mr. Kirby found a way (or was told a way) to include this as evidence of vaccines causing autism. The argument being that the Hepatitis B vaccine was given to those kids. It didn’t matter that the other dataset he was discussing in that same post, from the National Children’s Health Survey, didn’t support the idea at all. SafeMinds seems to be making the same arguments in their blog pieces as well.

If SafeMinds is correct and the announcement comes out Friday, expect updates on the CDC autism data page, and the CDC autism page. But, hey, expect about 5,000 news articles too.

Autistic Self Advocacy Network leader Ari Ne’eman has been nominated by President Barack Obama for a position on the National Council on Disability

17 Dec

From a White House press release yesterday:

President Obama Announces More Key Administration Posts, 12/16/09

* Marie Collins Johns, Deputy Administrator, Small Business Administration
* Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation
* Jonathan M. Young, Chair, National Council on Disability
* Carol Jean Reynolds, Member, National Council on Disability
* Fernando Torres-Gil, Member, National Council on Disability
* Chester Alonzo Finn, Member, National Council on Disability
* Gary Blumenthal, Member, National Council on Disability
* Sara Gelser, Member, National Council on Disability
* Ari Ne’eman, Member, National Council on Disability
* Dongwoo Joseph “Joe” Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”

edit to add, from the press release:

Ari Ne’eman, Nominee for Member, National Council on Disability
Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.

An example of how people earn the title “denialist”

16 Dec

Denialist. One who denies. It is a phrase that gets thrown around a lot on the internet. You don’t agree with me? Well, you must be a denialist. The term has risen in prominence lately with Michael Specter’s recent book, “Denialism, How Irrational Thinking Hinders Scientific Progress, Harms the Planet, and Threatens Our Lives” One of his prime examples is the anti-vaccine movement, so this book has been discussed on a number of autism blogs (including this one).

Denial–here are definitions from dictionary.com

1. an assertion that something said, believed, alleged, etc., is false: Despite his denials, we knew he had taken the purse. The politician issued a denial of his opponent’s charges.
2. refusal to believe a doctrine, theory, or the like.
3. disbelief in the existence or reality of a thing.
4. the refusal to satisfy a claim, request, desire, etc., or the refusal of a person making it.
5. refusal to recognize or acknowledge; a disowning or disavowal: the traitor’s denial of his country; Peter’s denial of Christ.
6. Law. refusal to acknowledge the validity of a claim, suit, or the like; a plea that denies allegations of fact in an adversary’s plea: Although she sued for libel, he entered a general denial.
7. sacrifice of one’s own wants or needs; self-denial.
8. Psychology. an unconscious defense mechanism used to reduce anxiety by denying thoughts, feelings, or facts that are consciously intolerable.

Many people “deny” that vaccines work. Many people “deny” that the diseases vaccines prevent are dangerous. People who do so are, in my book, denialists.

Case in point, a recent blog post by Kim Stagliano of the Age of Autism blog: An Autism Mom Goes Back to Christmas 1962. In it, she presents a doll from 1962. A doll with a changeable face, and one face shows the baby doll with measles. The message of the blog post is clear: measles wasn’t so bad. Ms. Stagliano writes:

Yes, in 1962, measles were a common childhood illness. And little girls played with dollies that had the measles, and made them all better. So did doctors for children who got the measles.

Well, yes. Most of the time children got better.

Let’s check what people wrote about measles in the early 1960’s, shall we? From Time Magazine, 1961 (with emphasis added by me).

When famed Harvard Nobel Laureate John Franklin Enders announced at a Manhattan meeting three years ago that he had isolated measles virus, his fellow virologists stood up and cheered. It would not be long, they hoped, before a vaccine could be developed to wipe out a disease that sends one child in 4,000 to institutions for the feebleminded. But the first live virus vaccine developed by Enders left much to be desired; four of five children got severe fevers, roughly half developed a rash. Last week, after much toil by Enders and others, a group of Pennsylvania physicians and virologists announced that they had successfully tested a measles vaccination technique. Children are first inoculated with Enders vaccine, which gives nearly 100% protection. Then, almost immediately, they are injected in the same arm with gamma globulin, which holds undesirable side effects, such as fever and rash, to a minimum. The Public Health Service still must approve the new measles technique, establish manufacturing standards. If all goes well, a vaccine will be on the market next year, just as measles heads toward its next cyclical peak.

Yes, virologists cheered, 1 in 4,000 children were sent to institutions.

Life Magazine, in 1963, discussed the new vaccines for Measles.

Though often joked about, this commonplace disease kills about 400 Americans each year–twice the number that polio now kills. Several thousand cases each year develop encephalitis, which can damage the brain.

The Age of Autism, where Ms. Stagliano blogs, was quite upset by Mr. Specter and his book for singling out anti-vaccine groups as denialists. My suggestion: if you don’t want to be labeled denialist, don’t be a denialist.

AAP launches HealthyChildren.Org

11 Dec

The American Academy of Pediatrics has a new website with medical information: HealthyChildren.org. The site includes a compilation of many AAP articles on various health topics.

AutismNewsBeat has blogged it as AAP launches Healthychildren.org.

US News and World Report has an article about the new site, including comments about using the search engine to find autism information.

The site is still a “beta” release. But I like the general appearance. I like the quick-links on the main page by age group (prenatal, baby, toddler, gradeschool, teen, young adult). For example, the baby link takes you to a page with milestones and articles.

Disability Coalition Applauds Introduction of Legislation that Protects Students with Disabilities from Abuse

10 Dec

Below is a press release from the Justice for All Action Network and the Autistic Self Advocacy Network. While the topic of seclusion and restraint is painful to write about, it is a pleasure to highlight disability advocacy like this.

This is also discussed on the Education Week blog.

Seclusion and restraint legislation one of 12 items on Coalition Agenda

(Washington D.C.) — The Justice for All Action Network (JFAAN), a coalition of disability-led organizations and allies, applauds proposed legislation that protects students with disabilities from the misuse of seclusions and restraints in schools. Introduced today in the House of Representatives and the Senate, the bill will equip students with disabilities with federal protection from abuse in the schools.

“There is a long history of students with disabilities being subjected to inappropriate and abusive seclusions and restraints,” said Ari Ne-eman of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee. “The legislation introduced today is the first of its kind, going far beyond previous efforts to protect students with disabilities. We look forward to working with House and Senate leaders to pass legislation that addresses each of our concerns and provides students with disabilities with urgently needed protections from abusive seclusions and restraints.”

While the JFAAN Coalition hopes to continue work with House and Senate leaders to ensure that the final legislation is the strongest possible, the bill introduced today is the most comprehensive legislation to date protecting students with disabilities from abuse in the schools.

“We commend Chairman Miller, Representative McMorris Rodgers and Senator Dodd for taking a stand against the barbaric treatment of disabled children and youth that has been allowed to take place in too many schools for too many years. Schools need to educate children without putting students in solitary confinement or using inappropriate and unsafe restraint. When schools become mini-prisons, families have no reason to send their children to school,” said Andrew Imparato, President and CEO of the American Association of People with Disabilities, a member of the JFAAN Steering Committee.

Unlike previous attempts to protect students with disabilities, this legislation applies to all students and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint. “The fact that our children are still subject to abuse is a disgrace,” said Dana Commandatore, the parent of an Autistic child and a supporter of the Autistic Self Advocacy Network. “The legislation introduced today is an important step toward ensuring that students with disabilities are protected from abusive restraints and seclusions.”

Legislation that protects people with disabilities from unwarranted seclusions and restraints is a key component of a campaign agenda developed by JFAAN. The 12-point JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.

Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

For more information, contact Ari Ne-eman, Autistic Self Advocacy Network, (202) 596-1056;
Andy Imparato, American Association of People with Disabilities, (202) 521-4301

Age of Autism Abandon Pretence

9 Dec

To many of us who have been following the online ‘careers’ of the various people and factions behind Age of ‘Autism’ for many years (at least 7 in my case) this will be no surprise but it still needs pointing out once more:

The Age of ‘Autism’ blog is a repository of and a flag waver for anti-vaccine quackery.

Easy to say and growing easier and easier to demonstrate every day. As of the time of publishing of this post, the latest *six* posts from Age of ‘Autism’ have absolutely nothing to do with autism. These posts are (in reverse order):

1) Counting Offit’s Millions: More on How Merck’s Rotateq Vaccine Made Paul Offit Wealthy
2) Is One Man to Blame for the WorldWide H1N1 Panic?
3) $300K to Banyan Communications from Advisory Commission on Childhood Vaccines?
4) Harvard and CNN Report on Lower than Expected H1N1 Vaccine Uptake
5) Oops. Flu Pandemic May Be The Mildest since Modern Medicine Began Tracking.
6) Kickin’ the Tires of the Green Vaccine Initiative

*All* the above have no relationship to autism. *All* the above have a direct relationship to anti-vaccine beliefs.

One or two stories every now and then that don’t touch on your blog’s core subject is routine and only to be expected – but six in a row? Thats only routine if your core subject is drifting. Or if your *real* core subject is slowly being revealed.

Is Generation Rescue trying to get Airborne to fund junk science?

8 Dec

The latest Generation Rescue newsletter leads me to believe that Airborne may be considering funding Generation Rescue. Here is the latest Generation Rescue newsletter:

Generation Rescue is in the final stages of receiving grant funding for a vaccine research study on the long term effects of the current U.S. recommended schedule. The last thing we need are declarations of support from our community who purchased Airborne Health.

1.) Did you purchase Airborne during May 1, 2001 – November 29, 2007?
2.) Do you support a vaccine research study on the long term effects of the current U.S. schedule?
3.) Do you support a study on vaccinated vs. unvaccinated children?

If you answer yes to all three of these questions, then you are a supporter and can help Generation Rescue provide ground breaking research.

The first 40 respondents will receive a free bag of revitaPOPS for completing a declaration of support.

Airborne is a supplement company that produces a product that claimed to be able to help people fight the common cold. They were involved in a class action lawsuit, resulting in an agreed payment of $23 million to consumers who purchased the product and who could prove they purchased it.

Steve Novella at Science Based Medicine discussed this.

My speculation: there is a big pot of the $23M left over, and Generation Rescue is trying to get Airborne to donate it to fund a vaccinated/unvaccinated study.

Of all the groups to manage such a study, Generation Rescue is way (WAY) down on the bottom of the list.

Generation Rescue has a history of misrepresenting and misusing science to forward their agenda. A few cases: their “phone survey” and their pseudo study on vaccination, childhood mortality and autism around the world.

The deadline to submit claims was December 5, 2009 (4 days ago). It strikes this observer as likely that only a small percentage of Airborne’s customers saved their receipts and were able to be compensated, leaving a large amount of money unclaimed.

I really wonder if Airborne knows what sort of group they are working with in Generation Rescue. Soon Airborne will receive testimonials from people who claim to have purchased their products, who want a Vaccinated/Unvaccinated study done by Generation Rescue.

The very fact that Generation Rescue is paying people to submit testimonials should raise red flags at Airborne.

In my opinion, if, for whatever reason, Airborne wants such a study done, they should find a group other than Generation Rescue to manage it. Funding Generation Rescue in this effort is just throwing money away. Airborne would do much better to fund something that could make a real impact in the lives of autistics.

Edit to add

1) Note that Airborne made no admission of fault in this settlement.

2) Here is a section from the settlement document, noting that money left over could be donated to a non-profit group

If the aggregate value of Valid Claims by Settlement Class Members is less than the amount of the Net Settlement Fund, the balance of the Net Settlement Fund, after payment of all Valid Claims of Settlement Class Members, shall be distributed cy pres to non-profit organizations. Class Counsel shall nominate the non-profit organization(s) that will be recipients of any cy pres funds, which shall then be subject to the consent of Defendants (which Defendants shall not unreasonably withhold) and approval by the Court. For purposes of this paragraph, Defendants agree
that in order to validly withhold consent, Defendants must demonstrate that including a non-profit organization as a recipient would substantially
undermine Defendants’ legitimate business interest or is otherwise improper, and that Defendants’ refusal to consent is not philosophically or
politically motivated. Plaintiff agrees that the Center for Science in the Public Interest will not be a recipient of cy pres funds.

It appears to this reader that the class action lawyers (Center for Science in the Public Interest ) get to nominate the possible non-proffits, and that Airborne has the right to reject. In order to reject a non-profit, Airborne would have to claim that the donation “would substantially undermine Defendants’ legitimate business interest or is otherwise improper, and that Defendants’ refusal to consent is not philosophically or politically motivated”

I wonder if class counsel has to prove that the nominations are not philosophically or politically motivated?

How much does one get paid to run Thoughtful House?

4 Dec

It appears as though $270,000 per year.

The tax forms are online.

They paid the University of Washington $319,000. One might speculate this is payment for their research collaboration on vaccines with Dr. Gene Sackett. If so, it is odd that no money is paid to their other collaborator, the University of Pittsburgh.

There is also a payment of $119,000 to a group called Visceral in Bath, UK.

It strikes this reader a bit odd that Thoughtful House paid them $119,000, but they only show an income of £36,551 . Perhaps it is a difference in fiscal years.

Nothing really that interesting. Just a lot of money being paid to a person who, as far as I can tell, is not licensed to actually treat children.

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