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Surpise! Some people don't like Autism's False Prophets

13 Sep

There is some lively discussion amongst people who don’t like Paul Offit’s, “Autism’s False Prophets“. Many of the complaints are from people who haven’t read the book. But, hey, we can all admit that just given the title and the author, many people can accurately assess that they wouldn’t like the book.

I found Mr. Olmsted’s “review” interesting.

Kim Stagliano has given some advice in the comments:

Easy – sit at Barnes and Noble, browse a copy while you sip a latte (oopsie! don’t spill!) and then when you return the book to the shelf, tuck in a copy of Dan’s review…. And return it to the shelf labeled, “Eastern Aborginal Snail Mating Habits in the 15th Century.” Five years down the road, go back and give it a good dusting…

This is the face of vaccine-oriented autism advocacy in America.

Well, should I find a defaced copy in my bookstores, I can tell you what I’ll do: go to the front desk and see if I can purchase it at a deeply discounted rate. Then, I’ll forward the book, with a copy of that blog post and some of the comments highlighted, to someone involved with autism policy in the U.S. government. With a nice cover letter, of course. I’ll point out that, yes, I am one of the parents who are angry at the vaccine-activists co-opting the autism agenda. I’ll also point out who Ms. Stagliano is in relationship to AoA/Generation rescue. I’ll ask, “is this the sort of representation we need on a Secretarial Level autism advisory board to the secretary of HHS?”

Personally, I’m not waiting to possibly find a defaced copy. I’m sending a few copies out to some people in government.

You can too. Amazon.com (and other booksellers) allow you to send books to people other than yourselves. You can look up the address for your representative or senator online.

Consider putting “attention legislative analyst for healthcare” and follow up with an email (you can contact your Senators and Representative via their webpages). Feeling a little tight on cash? Send an email and ask your legislators to get the book for themselves and their healthcare legislative analyst.

There are, of course, many other people influential inside and outside of government who could use a copy of Autism’s False Prophets, so you don’t have to feel limited to the Congress and Senate.

It doesn’t hurt to check before sending: He/she may have already read it!

And, yes, I will remember this idea when the new government takes office in early 2009.

Autism's False Prophets

5 Sep
Autism's False Prophets. Bad science, risky medicine and the search for a cure - Dr Paul Offit

Autism's False Prophets. Bad science, risky medicine and the search for a cure - Dr Paul Offit

Available now – Amazon UK, Amazon US, Amazon Canada.

NB – Dr Offit is donating all profits from this book to autism research.

So. Here’s the short review: holy shit, this is a good book, you need to buy it and pass it on. Make your local library stock a copy or three.

Here’s the longer review.

The book begins – after a dedication that made me grin from ear to ear – with a quote so acutely apposite that its like Professor Szasz said it to perfectly sum up the book and the last ten years:

When religion was strong and science weak,
men mistook magic for medicine.
Now, when science is strong and religion weak,
men mistake medicine for magic.

I knew Dr Offit got a lot of hate mail. What I didn’t know was the extent and the utter viciousness of it. From the books prologue:

Whilst sitting in my office, I got a phone call from a man who said that he and I shared the same concerns. We both wanted what was best for our children. He wanted what was best for his son, giving his name and age. And he presumed I wanted what was best for my children, giving their names and ages and where they went to school. His implication was clear. He knew where my children went to school. Then he hung up.

I can empathise. I’ve had cowards directly or indirectly threaten my kids too. We know who I’m referring to.

Offit refuses to feel sorry for himself and goes on to describe in painstaking detail the circumstances surrounding the rise and fall of the two main vaccine/autism ideas: MMR and thimerosal. He paints a vivid and (in my experience) completely accurate portrait of Andrew Wakefield as a vainglorious but weak king who simply doesn’t have the courage to admit his own wrongdoing. Offit recounts an anecdote from one time Wakefield supporter, John March. The setting is a meeting between March, lawyer Richard Barr and Andrew Wakefield, called to discuss their litigation strategy.

[March]…presented his data….he told them there was no difference between the children with autism and controls, he suddenly found that the meeting had moved on to a different subject. It was a Damascene conversion for him. He realised that Wakefield could not hear negative results.

Offit (rightly) does not spare Wakefield at all. This is the man who is literally, the architect of the whole idea that vaccines cause autism. Offit quotes Wakefield in an interview with US show ’60 minutes’ in 2001:

I would have enormous regrets if [my theories] were wrong and there were complications or fatalities from measles.

In Feb this year, the Gaurdian reported:

There were 971 cases of measles in England and Wales in 2007 in contrast to 740 the previous year — a rise of over 30% and the highest jump since records began in 1995, said the Health Protection Agency (HPA).

Two teenagers have died of measles in the UK. One in 2006. One in 2008. Are there any signs of Wakefield’s profound regrets?

Offit goes on to study the thiomersal hypothesis from the beginning of the noughties to 2007 and the Cedillo hearings.

It is a strange feeling reading an account of events that you have been so intimately involved in talking about for the last five years. From the bizarre Bernard et al paper and the outright insistence of certain writers and founders of autism/anti-vaccine groups that autism was just another name for mercury poisoning, through Kathleen’s demolition of the Geier’s credibility and science, all the way to Jenny McCarthy’s Oprah showboating.

The main feeling I got was how much a lot of this was now _history_ – as Offit clearly and devastatingly argues, the science has spoken. Vaccines don’t cause autism. And as I blogged about recently, it seems pretty clear that the US public are (rightly) more concerned about the possible resurgence of killer diseases such as measles than they are to keep flogging the dead horse of autism anti-vaccinationism.

But my all time favourite part of the book was the final section. My friends were interviewed at length and the clearest feeling I had from this section was – you threw everything at us. Your money, your influence, your political power. We’re still standing. You threatened us with legal action – we’re still standing. You called us and our children names and threatened their well being. We’re still standing.

Paul Offit has written a real page-turner of a book here. One that should matter to every single autistic person and every single parent of an autistic person. Ultimately, its a book written to support autistic people. Why? because it seeks to close the door on a debate with no scientific merit. Will it do that? Possibly not, we are not dealing with rational people by and large. But what it will do is once and for all dispel the notion that ‘the parents’ who believe vaccines cause autism must be listened to solely because they are parents. Amen to that.

Conflicts, then and now

3 Sep

There is a lot of talk about conflicts of interest in autism.  This is especially true with Dr. Paul Offit’s book, Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure out now.

Consider his letter to the New England Journal of Medicine in May, 2008.

Dr. Offit reports being a co-inventor and co-holder of a patent on the rotavirus vaccine RotaTeq, from which he and his institution receive royalties, as well as serving on a scientific advisory board for Merck. No other potential conflict of interest relevant to this article was reported.

In August Dr. Poling responded to that May Letter, and Dr. Offit was able to comment as well. Below is Dr. Offit’s conflict of interest statement.

…

Yep, that’s right. No statement. In a few short months, the royalties for the RotaTeq vaccine have been settled and Dr. Offit’s tenure as a consultant to Merck has ended. Basically, it’s as we’ve discussed before: Dr. Offit no longer has any financial conflicts of interest in discussing vaccines.

Note this statement about the book from the publisher’s site: He [Offit] will donate all royalties from sales of this book to autism research. I.e. he also doesn’t even have a conflict of interest in promoting his newest book.

I don’t expect all the people who dislike what Dr. Offit has to say to report these facts accurately. I will say that Sharyl Attkisson didn’t repeat the “Offit works for Merck” line, and good for her. I think it is a good assumption that the people who helped her with that story probably did push the “He’s a Merck consultant” idea.

Many people people (and Orac, and Kev, and AutismNewsBeat, to name a few) have gotten it right already, so I shouldn’t be too worried about it. But, as I await the book showing up in my mailbox, I keep thinking about the issue of conflicts of interest and Dr. Offit.

[note: I made a few minor edits after this post went live. They were for clarity and did not change the substance of the post]

"I don't believe that"

29 Aug

To promote his new book ‘Autism’s False Prophets. Bad science, risky medicine and the search for a cure’ (Amazon UK, Amazon US, Amazon Canada) – and look for a review here very, very soon – Dr Paul Offit went on the US radio show Talk of the nation ‘Science Friday’ earlier today.

It turned into a microcosm of exactly the sort of scenario that those of us who have blogged about this for some time have come to expect. A question, a reasoned response and then a flat statement of denial.

The show began with the show host (who’s name I didn’t catch) asking why people weren’t vaccinating. Offit gave the answers we all know.

Then the show took a turn into what could’ve been a blog argument on any one of a number of blogs – including this one. A caller called Chantelle/Chantal came on the line and essentially asked Dr Offit how it could possibly be safe for a newborn to receive up to 1250micrograms of Aluminium and that there hadn’t been any studies on how Aluminium could affect a child. She said –

that is why I will not follow the CDC’s guidelines….my child will be vaccinated on my own schedule.

(Her emphasis)

Dr Offit answered with a brief overview of Aluminium’s role in a vaccine is and then told Chantal the simple truth – one that I blogged about fairly recently – there’s more Aluminium in between 50 days to a years worth of breast milk than in the entire vaccine schedule:

We live on the planet Earth. If we choose to live on the planet Earth that means we’re going to be exposed to light metals like Aluminium and heavy metals like mercury.

Chantal then seemed (I wasn’t entirely clear) to want to compare kids with kidney issues (who clearly need to be careful with Aluminium) with _all_ kids. As Dr Offit stated – that’s hardly a valid or real-world comparison.

Then the host asked a great question:

Chantal, is there anything Dr Offit could tell you that would change your mind

.

The answer: “Absolutely not”.

And there we have it. That is the rock bottom of every single argument the autism/antivax brigade peddle. Screw the science, screw the facts. I just don’t want to hear it and I will put my fingers in my ears and make ‘la-la’ noises until you go away.

Chantal then goes on to justify this ridiculous stance by saying (a la Jenny McCarthy) that there is no independent science supporting vaccine safety. This is tosh. A study this is submitted for peer review to a science journal is peer reviewed by independent experts from the relevant field all over the world. And then, the ultimate test of impartiality takes place – the science is either replicated or it isn’t. Replicated science _has to be_ by definition be independent of its author. How could it not be? If we want to see the opposite of reproducible science, then that can be arranged.

Chantal goes on to say that Dr Offit ‘makes millions’ from speaking about the safety of vaccines. A bizarre claim that I’m pretty sure is not true. He then goes on to describe the ‘high bar’ that vaccine studies must pass. Studies with tens of thousands of participants.

Next, Chantal tries the ‘too many too soon’ dogma that we’ve become recently familiar with. She claims ‘six at one time is absurd’. Dr Offit gives Chantal some facts to play with on that score too:

…the bacteria that live on their nose [a newborn], or the surface of their throat are literally in the trillions. Those bacteria have between 2,000 and 6,000 immunological components and consequently our body makes grams of antibody to combat these bacteria….The number of immunological challenges contained in vaccines is not figuratively, it is literally a drop in the ocean of what you encounter every day.

(Emphasis his, slight paraphrasing)

Chantal then got a bit snappy.

So tell me…how many studies have been done on vaccine loading, which means five or six vaccines at one time. How many?

Dr Offit’s answer:

Somewhere in the vicinity of the high hundreds to low thousands.

Chantal:

I don’t believe that.

Boom! There it is again – she simply doesn’t believe it. Screw the facts, screw the evidence, my fingers are going right back in my ears…la-la-la-la…I can’t hear you…

Dr Offit explains further that any vaccine in the US has to undergo something called a ‘concomitant use study’. These are to establish that vaccines work OK together.

You have to show that vaccine does not interfere with the immune response or the safety of existing vaccines and similarly that existing vaccines don’t interfere with the immune response or the safety of the new vaccine

Dr Offit said ‘high hundreds to low thousands’ of studies (Chantal didn’t believe that remember). A simple Google search reveals over 1,800 results for that phrase. Searching PubMed for ‘concomitant vaccine’ returns over 700.

Dr Offit closes the interview by saying he doesn’t believe all parents are as close minded as Chantal. He uses a nicer phrase than that as he’s a gentleman but that’s how I see it. Close minded to the point of obstinate stupidity.

For some people, it truly doesn’t matter what the facts are, or what the science is. They just stick their fingers in their ears.

La-la-la.

Katie Couric, Sharyl Attkisson, Larry King, and Dr. Jay Gordon

12 Aug

As you may recall, I faxed Katie Couric a while back making some comments and asking for some information.  I find that the CBS coverage of autism is, well, a bit odd.  Sharyl Attkisson seems to be promoting an idea, not following a story where it leads.  The main example I give for that is the total lack of a followup to the assertion made by Bernadine Healy that “[t]here is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people.”  Who, precisely, aside from Dr. Healy expressing this concern?

The Voices For Vaccines fax which preceded mine was posted an autism/vaccine advocacy website within hours of being sent, begging the question of who within CBS news sent it, and why there is such a close tie between the two.

Anyway, I shouldn’t rewrite the entire previous blog post–the short version is: I had questions.  I still do.  That’s right, I still do.

I’m not complaining, just pointing out a simple fact: CBS didn’t take the time to respond to simple questions about their reporting.

Now, take a newer event in the autism world.  In preparation for the Every Child By Two press conference last week, some comments were made on the Yahoo group dedicated to the “Green our Vaccines” rally.  One comment in particular by Dr. Jay Gordon struck me as rather bothersome.   The comment was directed at a person named Avrielle Gallagher, who works for Larry King Live.

Being in the mode of wondering about how the media works, especially those apparantly sympathetic to the vaccine/autism causality question, I decided to contact Ms. Gallagher.  I sent the following email to the same address Dr. Gordon used.  For good measure, I used the Larry King Live website to send the same message:

Hello,

I saw an email from Dr. Jay Gordon to you.  It was posted on the JennDCRally autism list.  The email is listed below.

Could you explain what is meant by the term, “[redacted]?  I see that you work for Larry King Live.  Is he asking you to do a show on the conflicts of interest of these groups?

If so, perhaps you would like to read a few analyses of Dr. Offit’s conflicts of interest.  I looked into the public data and posted my views here:

https://leftbrainrightbrain.co.uk/?p=1022

I rewrote this and faxed it to Katie Couric of CBS, as noted here:

https://leftbrainrightbrain.co.uk/?p=1057

As you will see, I am not in agreement with Dr. Gordon.  You will also see that I am the parent of a young child with autism, one who does not subscribe to the autism/vaccine concept.

Rather than “[redacted comment]”, I would like you to consider going after a good, reasoned story.  I would especially like to see a good, reasoned story on the subject of Dr. Offit’s new book, “Autism’s False Prophets”.   This is causing quite a stir amongst the alt-med subset of the autism community.  They have publicly stated that they have targeted Dr. Offit and those are also promoting vaccination (like Amanda Peet).

As you will see from my posts, Dr. Offit appears to have no more financial conflicts of interest regarding vaccines.  He is actually in a position of high independence.  And, yet, he still promotes the same message as before.  That should tell us all something.  In addition, his book is going to be a big story.

So, I ask a simple question: will you go after the story or the person?

I look forward to a response.

I’m still looking forward to a response.  I’m an optimist that way, I guess. 

Oh, you are no doubt wondering why I redacted Dr. Jay’s exact words.  You see, after a bit I decided to email him.  I admit, I should have emailed him from the start, but I did wait a few days.

Dr. Gordron, I saw the below message from the JennyDCRally autism group.

If I may, could I ask what you mean by “[redacted].”?

Given that Avrielle Gallagher works for Larry King Live, this sounds like you are asking for Larry King to do a show about these people in a poor light.

I am the parent of a child with autism.  Surely you can see that the image of the autism community (or segments of the autism community) as a group that would use the media to “[redacted]” is something that I would like to avoid.  While we as a community may be divided on some issues, I would bet that the majority would agree that we rely heavily on the support of the majority of the public.

I look forward to your response.

Sullivan

Even though I misspelled his name, he responded within a couple of hours:

Thanks.

You’re correct, that was very poorly phrased.

What I meant was that there should be more light shined on the financial conflicts of interest which exist.

Jay

(emphasis his)

When I notified him that I intended to include his comments in this piece, he replied:

Dear Sullivan,

The first statement I made reflected my anger. I really do think there is far too much conflict of interest in the lives of many of the vaccine researchers, the CDC and the AAP.

The brief email answer I sent you reflects my true feelings about this.

Please feel free to quote me and, if you do, please also mention that I certainly don’t think that my being immoderate in my comments helps anybody.

Best,

Jay

Dr. Gordon did what Katie Couric, Sharyl Attkisson, Avrielle Gallagher, and the staffs for CBS News and Larry King Live failed to do: answer simple and (I hope) respectfully posed questions.

I could give a long list of the people who have answered simple, sometimes even complicated, questions, respectfully posed. I’ve been very fortunate in that regard. I would have loved to add CBS News and Larry King Live to the list.

It all just makes me wonder. CBS News and Larry King have spent decades reporting on how this person or that company or some group in the government ignored questions. Invariably, those reports cast a bad light on the groups investigated. And, yet, when presented the opportunity to clarify their own actions, they chose to be silent.

Maybe I’ll send a respectful question to Voices For Vaccines and ask if CBS News responded to their concerns. I know that CBS took the time to respond to the Orange County Register’s blog on Autism.

In their reply to the Inside Autism blog, CBS News noted:

…We believe our report was in no way defamatory of any institution or individual, and that no retraction is warranted…

As I’ve noted before, I like the irony of CBS News deciding for itself whether it was defamatory. Strikes me odd given the complaints alleged against, well, basically everyone the vaccine/autism groups have ever complained about.

But, I digress. I’d like to point out that I didn’t claim CBS was “defamatory”. I only bring this up to point out that even though CBS communicated with the Register blog, they haven’t addressed my questions.

A commenter on the Register’s blog said it best in her response to Lisa Randall of Voices For Vaccines. The Register’s blogger decided to highlight the comment, and I pull out the segment that caught my eye here:

…We expect the press to tell us the truth…

The first step is to tell us anything.

Jon Poling on Paul Offit

7 Aug

Jon Poling writes a letter in the NEJM that says:

Offit’s remarks about Hannah’s case are not evidence-based. He has no access to my daughter’s personal medical records, legal documents, or affidavits. In contrast, physicians from the Department of Health and Human Services (DHHS) who studied this information recommended that the government concede Hannah’s case. The clinical history Offit presents contains significant inaccuracies, and the resulting conclusions are consequently flawed.

This paragraph lies at the very heart of the mystery surrounding Hannah Poling’s diagnosis, concession and the subsequent media-frenzy.

There are two documents regarding Hannah Poling from which all medical information has been forthcoming.

1) Concession Report (This document has been removed due to the possibility of it being illegally obtained). If people really wish to read the document for themselves it can be founf here, at the Huffington post

2) Zimmerman Case Study

These two documents – and only these two documents – have informed *everyone’s* opinion. Aside from these two documents, there is nothing else (aside from Hannah Poling’s medical records). If anyone believes that not to be the case, I challenge them to either link to them or have the Poling’s release them. The Special Masters have made it very very clear that all that needs to happen for *all* records to be released is for the Poling’s solicitor to write and ask.

….in the case that is the subject of the media reports, if the parties who supplied documents and information in the case provide their written consent, we may then be able to appropriately disclose documents in the case.

Until the Polings elect to do this very simple action, they have to assume that people will write about what is available. They will also have to put up with the fact that people like me find it very, very suspicious that they repeatedly claim what they simply cannot back up and then refuse to release information that could clear these issues up straight away.

The Case Report contains _all_ the information necessary to make a judgement on whether:

a) Hannah Poling was diagnosed with autism (she was)
b) Hannah Poling was injured by vaccines (she was)
c) Hannah Poling’s autism was caused by vaccines (it was not)

How do I claim point c) as true? Easily. One takes the symptoms listed in the Case Study as being those caused by vaccines and compares them to the DSM (IV) criteria for autism.

fever to 38.9°C
inconsolable crying
irritability
lethargy
refused to walk
waking up multiple times in the night
having episodes of opisthotonus
no longer normally climb stairs
Low-grade intermittent fever
generalized erythematous macular rash
spinning
gaze avoidance
disrupted sleep/wake cycle
perseveration
expressive language was lost
chronic yellow watery diarrhea
appetite remained poor for 6 months
body weight did not increase
decline on a standard growth chart
atopic dermatitis
slow hair growth
generalized mild hypotonia
toe walking
normal tendon reflexes.

I have emboldened the items which match the DSM (IV). I’ve italicised the items which are repeated.

Hannah Poling’s Case Study was authored by four people. One was, of course, Jon Poling. The other authors are:

John Shoffner. In an interview in Scientific American, Shoffer agreed that the scientific evidence presented in the case did not make enough of a case to warrant compensation. He went on to say:

Shoffner notes that parents and advocates looking to impugn vaccines as triggers for autism—or mitochondrial disease—need direct, not just circumstantial, evidence. “If you were sitting in a waiting room full of people and one person suddenly fell ill or died or something,” he says, “would you arrest the person sitting right next to them?”

….

Jon Poling, says Shoffner, has been “muddying the waters” with some of his comments. “There is no precedent for that type of thinking and no data for that type of thinking,” Shoffner says.

Its worth noting that John Shoffner – unlike Jon Poling – is a mitochondrial specialist.

Andrew Zimmerman: When I attempted to get Zimmerman’s comments about the case, I received the following reply:

Dr. Zimmerman…….is not able to publicly discuss this patient. As a participant in this case, the family provided consent for Dr. Zimmerman to share information with the court, but we do not have parental consent to discuss the patient publicly – as we are bound by HIPAA privacy regulations, as in any healthcare setting in the U.S.

Why? If the Poling’s are so very keen to make an _accurate_ case then surely, giving permission to the doctors involved is the first step? What is it they don’t want Zimmerman to say?

Richard E Frye, as far as I know has not made any public statements on this case.

The report from Dr Offit was not inaccurate. It was accurate to the information we have. If there is more information then I ask the Poling’s once more to _release_ it. They are legally able to and if they really believe in what they claim then they should be doing it right now. Why aren’t they?

Amanda Peet on Good Morning America

5 Aug

Prior to today’s Every Child By Two press conference (no news outlets to link to yet) Amanda Peet was on the American show Good Morning America. The interview is below:

The only quotes I can get online are from the more high end Celeb mags (not the Perez Hilton trashy ones) such as Celebrity Gossip:

And now that she’s landed in New York City, Amanda is doing her part to help out the American Academy of Pediatrics and the Every Child By Two organization by lending her celebrity voice to a campaign urging parents to get their babies vaccinated against preventable diseases.

With a press conference scheduled for later today, Amanda recently said of her decision to help out: “When I was pregnant with my daughter Frankie, I had all kinds of questions, including ones about immunization. There is a wealth of misinformation about vaccines out there, particularly in Hollywood.”

“My husband and I took the time to speak to several doctors about our concerns. What became clear to us was that delaying vaccines could jeopardize our baby’s life. I have teamed up with Every Child By Two to help parents get the facts straight on this very important issue.”

Peet concluded, “My main message to parents is that they should not be taking medical advice from me or any other celebrity. They should look to their pediatrician, the AAP and other experts.”

For those of you who want to see what McCarthy has been up to, there is some footage from her recent American Wrestling Entertainment experience.

Jenny needs my help!!

5 Aug

I just got this email. I never thought I’d have the chance to help Jenny McCarthy, but here it is:

subject:

URGENT! – From Jenny McCarthy

Big old banner:

We need your help right now!

Salutation:

Greetings! (Contact First Name)

I love how close we’ve become over time! Not everyone calls me “Contact First Name”.

You won’t believe this! AAP is kicking off a “Vaccinate Your Baby” campaign.

Uh, the American Academy of Pediatrics is kicking off a “Vaccinate Your Baby” campaign, this is unbelievable? Next week: nutritionists urge, “Eat Food”. Personal trainers say, “Exercise”.

I mean, seriously, the AAP recomending vaccinating babies.  This is a stunner to someone?  How far removed from the mainstream do you have to be to think that “you can’t believe this” can be tied to “AAP is kicking of a vaccinate your baby” campaign?

Speaking to the press tomorrow is Amanda Peet, Rosalynn Carter, Betty Bumpers, the President of AAP, Paul Offit (holder of several vaccine patents), and a mom of a child with autism!  They say, “This initiative will address misinformation about vaccines that causes confusion among parents and puts children at risk.”

So, we have

1) Amanda Peet. Uh, is it bad to have an actress talking about vaccines?

2) Rosalynn Carter. Don’t even take your nasty smear campaign there. I think even Generation Rescue is smarter than that. I think.

3) Betty Bumpers. She’s the “Former First Lady of Arkansas and Cofounder of Every Child by Two”. I guess GR haven’t created any smear on her either. Smart move GR, keep it up.

4) The president of AAP. Is there a reason why they edited Renee Jenkins’ name?

5) Paul Offit, holder of several vaccine patents. Uh, perhaps Jenny McCarthy would like to read up on the difference between an “inventor” and the “assignee”. Dr. Offit “holds” no patents. Ah well, that doesn’t make good smear copy, does it?

6) And a mom of a child with autism!

Again, with the editing out of the name. This could be a blessing, as the mother might not get harassed. But the name is public: Ann Hotez.

I don’t know for certain, but “Hotez” is not that common of a name. This sounds like no ordinary “autism mom”, but the wife of the noted vaccinologist Peter Hotez.

First–thanks Mrs. Hotez. Thanks for taking the heat. Thanks for stepping forward. Thanks for helping kids.

Second–assuming I have the right person, I’d say that Ann Hotez probably knows a bit more about vaccines than, say, Jenny McCarthy. I’ll take any bet anyone wants to make that her husband knows more about vaccines than Jenny McCarthy’s partner, Jim Carrey.

“This initiative will address misinformation about vaccines that causes confusion among parents and puts children at risk.”

Not if Jenny has anything to say about it. As we can see, she’s already working hard on keeping the misinformation alive.

The press conference is tomorrow (Tuesday, August 5th, 2008) at the Peninsula Hotel, 3rd Floor Gramercy Room from 10:30 to 11:30. We need every family we can to go and tell the press the truth about this idiocy.

I’d love to tell the press there about the idiocy. Why do I suspect Jenny doesn’t want me talking to the press about the idiocy?

Thanks Jenny. Thanks for making the autism community look like an anti-vaccine crowd.

On the reality side of this–there is a website that is launching on this subject

http://www.vaccinateyourbaby.org/

After the launch of Voices for Vaccines, Generation Rescue made some sort of claim that they (VFV) were copying GR by creating a website. Look, here’s another group with the gall to create a website and not give credit to GR. I am shocked and amazed!

Back to the real world– here is the press release for the actual event tomorrow.

Thank you everyone working on this “vaccinate your baby” campaign. Thank you Amanda Peet. Thank you Ann Hotez. I apologize in advance for the reception my fellow autism parents are about to give you.

edit–one note: my email client has flagged the Jenny McCarthy email as a possible “scam”. I haven’t been able to make myself click the “not a scam” button.

Inside Autism: Dr. Paul Offit responds

5 Aug

I figured I was pretty well done with the Paul Offit/CBS story.  But, I think anyone who has been following these posts would like to read Dr. Paul Offit responds, on the Inside Autism blog.

I’m glad someone else approached him for a discussion of this.

I’ll pull just a couple of points out:

Dr. Offit explains that he did supply CBS news with information including

* The sources and amounts of every grant he has received since 1980;

* The details of his relationship, and Children’s Hospital of Philadelphia’s relationship, with pharmaceutical company Merck. Offit co-invented a Rotavirus vaccine that is manufactured by Merck. Children’s Hospital of Philadelphia, Offit said, holds the patent.

* The details of every talk he has given for the past three years. CBS asked for the past 28 years, but Offit said he hasn’t saved that information.

He notes that a followup email from Sharyl Attkisson stated:

You’re clearly hiding something and you need to be straightforward, the public has a right to know who its advisers are

Nope. No bias there.

I can fully understand why Dr. Offit declined the interview.

The story closes with a statement about why he keeps talking about vaccines:

“You’re asking me the question I spend the most time thinking about: Should I still be doing this? I’m just going to do it until people stop listening. It’s the thing I struggle with the most, and I think it’s unfair.

Well, if he looks at the last week of blogging here, he will see that at least this person is listening.

I hope people are listening in September.

Fax to Katie Couric

4 Aug

As you may have guessed if you’ve been reading this blog lately, the recent CBS story on the independence of vaccine supporters bothered me.

It bothers me that a news organization I grew up with would act the way they have.

Today I sent a fax to Katie Couric at CBS.  The text is below:

August 4, 2008

Katie Couric, Managing Editor
CBS Television Network
524 West 57th Street
6th Floor
New York, NY 10019-2902

VIA FACSIMILE

Dear Ms. Couric,

It is with great dismay that I, a parent of a young child with autism, have watched the ongoing series on autism by Sharyl Attkisson. This series’s angle was illustrated in her interview with Dr. Healy, which was tainted by the unfounded statement, “There is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people.” I feel a good journalist would have asked for Dr. Healy to support this statement. Given the stakes involved, that would be the minimum required before airing it.

I expect you will not be surprised that I also have concerns over the recent piece questioning the independence of vocal supporters of vaccines. In particular, the part discussing Dr. Paul Offit was lacking in facts and in real analysis of those facts .

A) The statement by Dr. Offit that a child can theoretically handle 10,000 vaccines at once was made, but with no discussion. This is often quoted out of context by Dr. Offit’s detractors, intended to create the impression that his views are somehow extreme. Nothing could be farther from the truth: the statement shows the minimal demands that vaccines make on the immune system, even that of a young infant. In fact, given the number of immunological challenges in the human environment, children do receive the equivalent of thousands of vaccines every day. Dr. Offit’s statement is also not a mere opinion: it is based on calculations he has performed and published in the peer reviewed literature. No one has published a paper showing this calculation to be false or exaggerated in any way.

Given that, I would ask that if CBS wishes to present this statement in the future, they either discuss it in context or, should CBS disagree with Dr. Offit’s analysis, present a reasoned discussion of why they disagree.

B) The statement that Dr. Offit holds an endowed chair joint with the University of Pennsylvania School of Medicine and the Children’s Hospital of Philidelphia (CHOP) was presented as a potential conflict of interest, because much of the funding for this chair came from Merck. (Unreported by Ms. Attkisson was the fact that CHOP supplied the rest of the endowment.) As stated, it implies that this is some form of a grant, giving Merck leverage over Dr. Offit. Those of us familiar with academia know that the opposite is true: the endowment is a gift to the University, not to the individual who holds the chair, and the donor (Merck in this case) retains no control over the disbursement of funds. The recipient of the chair is chosen in a competitive process. Thus, the holder of the chair is fully independent – both of any obligation to the donor and of the continuing obligation to cover one’s salary with research grants. Ms. Attkisson’s piece implied exactly the opposite.

C) It was noted that future royalties from Dr. Offit’s patents have been sold for $182 million. First, it is worth noting that Dr. Offit and his co-inventors do not “hold” the patents, but assigned the rights to their institutions: the Wistar Institute and the Children’s Hospital of Philadelphia. These are the groups which have negotiated the sale of future royalties. Second, it is worth noting that this sale of future royalties means that whatever statements Dr. Offit makes about vaccines can no longer have even the possible influence on his finances implied by the story.

I will not discount the fact that Dr. Offit likely has benefited financially from his efforts to produce a vaccine. Frankly, I hope he did. His vaccine saves lives throughout the world. But, the point for this discussion is that the value of these financial gains has already been determined.

Of note is the fact that no other patents or patent applications are published at present. His laboratory is closed down. Thus, there is no future vaccine which could present a possible conflict of interest for Dr. Offit.

Given these facts, what we have is a scientist who has over 25 years’ experience researching vaccines and infectious diseases, and has no financial conflicts of interest in the present or future. Isn’t this exactly what we want in a spokesperson?

This is a key point. The reason why Dr. Offit is being targeted in some quarters is that he has a book about to be published, “Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure.” Not only is it obvious that non-mainstream autism organizations like Generation Rescue would like to defuse the impact of this book before it hits, but leaders of the organization have baldly stated their plans to attempt to discredit Dr. Offit and the findings revealed in the book. The fact that Dr. Offit is willing to face their attacks, with no prospect of personal gain, bespeaks a purity of intent, not only in this venture, but also in his past statements about vaccines.

The recent incident whereby a fax from Lisa Randall of Voices For Vaccines was given within hours to Generation Rescue, an organization outside of CBS, begs the question: what is the connection between Ms. Attkisson or members of the CBS News staff and Generation Rescue? This is a serious question which I hope CBS News publicly addresses.

It also seems appropriate to ask in closing: Does Ms. Attkisson or other members of the CBS news staff involved with these stories have any conflicts of interest, real or potential, in discussing autism and/or vaccine injury? Again, I would hope that CBS News would publicly address this.

CBS made a highly unprofessional decision in sharing the fax from Ms. Randall with Generation Rescue, an organization which insults, smears and attempts to intimidate those with whom they disagree. This is unfortunate, because I would like to demonstrate the fact that I have no ties whatsoever to the pharmaceutical industry by giving my full identity. Instead, I will sign simply:

Sullivan
Autism Parent
LeftBrainRightBrain.co.uk
SullivansJourney@gmail.com

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