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Mark Blaxill on the Geiers: they do sloppy work

13 Oct

Mark Geier and, more recently, his son David have been active promoting autism as vaccine injury for over 10 years (Mark Geier has been active as an expert in, and been criticized for his lack of quality work, the vaccine court on non-autism issues for about 20 years). They have written multiple papers, ranging from bad to worse, attempting to argue the case that vaccines (and especially thimerosal) are a primary cause of autism.

There are multiple discussions over the years of the Geiers here on Left Brain/Right Brain, Respectful Insolence as well as many other places. The best work was done by Kathleen Seidel at Neurodiversity.com, but due to a server crash much of that content is not readily available. (although it is worth searching for the cached versions or the versions on the Wayback Machine).

The work of the Geiers is so poor that it has always been a wonder to me that no criticism has come from anyone promoting the idea that vaccines caused an epidemic of autism. It isn’t that those promoting the vaccine-epidemic idea are not bright, leaving me wondering if they are too biased by their beliefs or just unwilling to speak publicly against an ally. But, recall, these are the same people who closed ranks around Andrew Wakefield in the face of clear and proved ethical violations.

If we are to believe Jake Crosby, former writer for the Age of Autism blog, it appears that the tacit approval of the Geiers has, at least in part, been a case of “circle the wagons”. I.e. people defending an ally over speak their opinions. Mr. Crosby has blaxillwilliams and quotes more emails where Mark Blaxill (former board member of SafeMinds and a long-time proponent of the idea that mercury in vaccines are a primary cause of autism) expresses his views about the Geiers to Mike Williams (attorney involved representing the families in the Omnibus Autism Proceeding).

In an email image on Mr. Crosby’s blog, Mr. Blaxill is reported to have stated:

In the interest of full disclosure. I thought you might like to see my critique of the Geiers’ latest work on VSD. I have not been a big fan of the Geiers. I worry they do not represent our side well. They do sloppy work.

In another email (quoted by Mr. Crosby, the link to the original is nonfunctioning) quotes Mr. Blaxill as stating:

“As to the Geiers, I may be a bit of a minority voice here, but I worry very much that they can do our cause more harm than good. They are not very good scientists, write bad papers (both writing badly and reporting in sloppy fashion) and attract too much attention to themselves as individuals. In this last regard, they don’t show nearly as well as Andy Wakefield but they’re trying to play the same role. Frankly, if I were on the other side and were asked to critique their work, I could rip it to shreds. I’m surprised they haven’t been hit harder. So I think you are wise to diversify.”

Mr. Crosby’s stance is that this constitutes “interference” in the Omnibus Autism Proceeding. I.e. Mr. Crosby seems to imply that the Geiers are not sloppy scientists whose work is poor, but that the Geiers should have been allowed a more active role in the Omnibus.

In this case I find myself agreeing, in part at least, with Mr. Blaxill. The work by the Geiers is poor. Where I don’t agree is Mr. Blaxill’s decision to hold back on making those statement public. Not just because it’s hard to take the stance that one is a only “…interested in the quest for the truth” when one holds back on key information like an entire critique of the Geiers’ VSD paper. No. It goes deeper than that. The Geiers’ junk science went beyond promotion of the idea that thimerosal is a primary cause of autism. The Geiers ran a clinic for many years. Mark Geier was a licensed physician, David Geier worked in the clinic (and has been accused of practicing medicine without a license). Through their papers and their talks at autism parent conventions like AutismOne, the Geiers became well known. One of the “brand name” autism clinics. They reached this level of respect within their community because no one within that community dared to speak out.

I’ve noted on Left Brain/Right Brain many times before that these parent conventions differ markedly from real science conferences in that no one ever seriously challenges the speakers. They can present almost any theory or idea, especially if they tie it to autism as vaccine injury, without anyone standing up and saying, “that makes zero sense”. These aren’t science presentations, they are advertisements. It would be interesting to see how many of these conventions Mr. Blaxill attended and yet remained silent on the “sloppy” work that could be “ripp[ed] to shreds” that the Geiers presented. Instead, parents were presented a view that the Geiers were good scientists who suffered unjust criticism for their “brave” stance on vaccines.

The Geiers were promoters of chelation as a treatment for autism. Not only does chelation have no scientific basis to be an autism treatment, a study just out this week using rodents states that chelation could be harmful if there is no real heavy metal toxicity:

Finally, we also found that succimer treatment produced lasting adverse neurobehavioral effects when administered to non-lead-exposed rodents, highlighting the potential risks of administering succimer or other metal-chelating agents to children who do not have elevated tissue lead levels. It is of significant concern that this type of therapy has been advocated for treating autism.

It is highly likely that Mr. Blaxill would disagree with the statement that chelation has no good scientific basis as a treatment for autism. He’d be wrong, but that’s been covered over and over before. The Geiers moved on from standard chelation to stranger, more dangerous therapies. As an aside, if chelation was a successful treatment one has to wonder why the Geiers were prompted to move on to using Lupron as an autism treatment. Lupron is very serious medicine and it shuts down sex hormone production in the body. Why Lupron, one might ask? The Geiers convinced themselves (or convinced themselves that they could pass off this explanation) that mercury bound itself to testosterone in the brain, making it hard to chelate. They cited a paper showing that if one heats testosterone and mercury salts in benzene, one could form these mercury/testosterone complexes. They actually claim (yes, they tried to patent this idea to make money off it) that this paper shows that “It is known in the art that mercuric chloride binds arid forms a complex with testosterone in subjects”. The “subjects” are beakers of benzene, not animals and not people. Add to that the lack of an explanation of how shutting down hormone production would break up these complexes. The Geier “science” supporting Lupron would be laughably bad if it wasn’t used to subject disabled children to Lupron injections.

Lupron clearly has no basis as an autism therapy. In fact, the “lupron protocol” played a major part in Mark Geier losing his medical licenses. One has to ask, how did the get such traction for such an obviously bad idea? For one thing, the Geiers were considered respected scientists in the vaccine injury/alternative medicine autism community due to their previous and ongoing work trying to link thimerosal and autism. Work which Mark Blaxill considered “sloppy” and worthy of being ripped to shreds. But instead of sharing his views on the Geier papers with the public, Mr. Blaxill shared them privately within his own circle.

It’s worth noting that the email quoted above was written before the “Lupron Protocol” was developed. We don’t know if Mr. Blaxill was alarmed by the emergence of the “Lupron Protocol”. I can’t find where he spoke out against it. We can see that his blog (under a different writer) promoted the idea as “MERCURY, TESTOSTERONE AND AUTISM – A REALLY BIG IDEA!“. Mr. Blaxill doesn’t seem to have commented there. For all the papers the Geiers have published, Mr. Blaxill only mentions them once in his book “Age of Autism. But as we’ve seen, tacit approval (silence) may not be the same thing as real approval.

Mr. Blaxill had the courage to testify before a congressional hearing last year. A hearing where the politicians had been lobbied in advance to be favorable to his cause. When it came to disagreeing with one of his allies, that courage was lacking. He allowed “sloppy” science from an ally to go unchallenged. An example of the fallout of such a decision, in my opinion had he stood up he could have slowed or even stopped the “Lupron Protocol”, a therapy which in my opinion amounts to the abusive treatment of disabled children in an uncontrolled and unapproved experiment.

—
By Matt Carey

No, the thimerosal in the flu vaccine does not explain why autism rates did not go down

6 Oct

Surprisingly enough, there are still people promoting the idea that the rise in autism diagnoses observed over the last decades was caused by thimerosal in vaccines. The original argument was this–vaccines were added to the vaccine schedule in the 1990’s and with them the infant exposure to thimerosal increased. Concurrent with this rise in infant thimerosal exposure was a rise in autism diagnoses. Add to this a poorly concocted argument that autism resembles mercury intoxication and you have the basis for the mercury hypothesis.

Thimerosal was phased out of infant vaccines over 10 years ago. Thus, if the thimerosal hypothesis were true, reported autism rates should be declining by now. As far back as 2005 David Kirby (whose book “Evidence of Harm” played a major role in promoting the mercury hypothesis) acknowledged this point in a statement

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

It’s 2013. Autism rates in California have not declined. Not in Special Education. Not in the CDDS roles. And, yes, we are six years past the 2007 deadline that David Kirby gave us.

To be specific, let’s use the same method that David Kirby and others used to claim a thimerosal induced autism epidemic in the 1990’s (namely the California DDS client count–which not a good method, by the way). Autism “rates” have gone up by over 150% since thimerosal was phased out of infant vaccines. The age 3-5 bracket had about 4000 children in 2003 and is currently over 10,000.

CDDS 3-5

So we have more kids in California receiving services under the autism label than when thimerosal was in vaccines.

This is but one in a huge list of reasons why the thimerosal hypothesis doesn’t work.

But let’s go back in time a bit. Not so long ago one would hear proposals that we go back to the vaccine schedule of the early 1980’s when, it is claimed, the autism rate was 1 in 10,000. Fewer vaccines, less thimerosal, less autism. So goes the logic.

Generation Rescue, in fact, used to recommend the 1983 schedule as one of their alternative schedules

Turn back the clock
Comment: This is the schedule from 1983. If it worked for kids then, why doesn’t it work for kids now?”

Does it make sense to go back to the 1983 schedule? No. Why? OK a lot of reasons, but let’s focus on the fact that infants were exposed to more thimerosal in the 1980’s than today. Infant vaccines have no or only trace amounts of thimerosal.  So if thimerosal were the (or even a single) primary cause of autism risk, we would see autism rates lower today. To not only 1990’s levels, but to something like 1980’s reported levels. Assuming that the reported rates in the 1980’s were an accurate count of how many autistics there were then (a bad assumption but it’s the one they use).

To recap–Infant thimerosal exposure from vaccines peaked at nearly 200 micrograms in the 1990’s, up from about 100 micrograms in the 1980’s and is now less than 10 micrograms. And autism rates have not declined at all. Much less to 1980’s levels.

Once anyone says this the instant answer is that there is still thimerosal in some influenza vaccines. This, they say, is why autism rates have not declined. (note that thimerosal containing vaccines, including influenza vaccines, are banned in California for infants and pregnant women…and autism “rates” have continued to climb here).  

For completeness sake, let’s consider a kid who gets the maximum exposure to thimerosal from vaccines. I.e. a non California kid.  A kid who turns 6 months (the earliest age they will give a flu vaccine to a kid) during the flu season.  That kid will get 2 vaccines in the first year (6 and 7 months) then another influenza vaccine each year thereafter. Each with 25 micrograms of mercury from thimerosal. How does the thimerosal exposure compare to the 1983 schedule?  Take a look for yourself (exposures in micrograms of mercury from thimerosal):

1983 schedule 2013 schedule
DPT Inluenza
2 months 25
4 months 25
6 months 25 25
7 months 25
Total by 1 year 75 50
18 months 25 25
Total by 2 years 100 75
30 Months 25
Total by 3 years 100 100

So by age 3, the exposures are the same.  Except that the kid of today gets the thimerosal later and more spread out over time.  As an aside–most people who talk about the rise in thimerosal exposure during the 1990’s neglect to point out that the cumulative exposure in the 1980’s was already 100 micrograms. I.e. the “safe” level was significant.

If thimerosal were the driving force behind the rise in autism diagnoses, we should be back to 1983 levels, misrepresented by those claiming an epidemic as 1 in 10,000.  Instead we are at 1-2%.  The “rates” didn’t go down.

By this point the proponents of thimerosal are basically screaming, “you are forgetting the vaccines recommended to pregnant women!” No, I just put that off until now.  Sure, the influenza vaccine is recommended for pregnant women, but as the CDC notes:

Prior to 2009, influenza vaccination levels among pregnant women were generally low (~15%) (5,9).

So, from about 2000 to 2009 there wasn’t a big increase (or even a large part of the population) getting influenza vaccines while pregnant, nor were their children getting exposures higher than those in the 1983 schedule.

Take a look at that graph for California administrative autism prevalence again. Between 2002 (after the drawdown of thimerosal in vaccines) and 2012 the autism count doubled. Thimerosal exposure was down. A lot. Below 1990’s “epidemic” levels. Back to the 1983 “worked for kids then” levels. But autism “rates” continue to climb.

The people still pushing the idea that thimerosal is a (or even the) primary cause of autism are not unintelligent. We are talking about college educated people. Ivy league schools. A former journalist, an intellectual property expert and more. There is no math above. It’s all quite simple and straightforward. It uses the exact same logic and methodology they used to promote the idea that mercury causes autism. This is where intellectual honesty and basic integrity should kick in and get people to suck it up, admit their mistakes and start repairing the harm they have caused.

I’m not holding my breath.
—
By Matt Carey

Whitewashing the brutal murder of Alex Spourdalakis

31 Aug

Alex Spourdalakis was a 14 year old autistic who was brutally murdered by his mother and another caregiver. Among those with extraordinary needs, Mr. Spourdalikis had extraordinary needs. Shortly before his spent a considerable amount of time in a hospital, reportedly restrained the whole time. So far the only real details from that time have come from his mother and caregiver who were the perpetrators of the murder. The family was offered help. When someone from the local Autism Society asked the mother what she needed “[Ms.] Spourdalakis said all she wanted was an attorney” and one was found for the family. Another news report states that “Department of Children and Family Services spokesperson says that Dorothy Spourdalakis was offered services, but she refused.” Mr. Spourdalakis’ case became well known, especially within the online autism communities. The family received the services of Andrew Wakefield, whose career has taken him into reality TV film making. Mr. Wakefield’s team helped to publicize the situation and followed the family to New York from Chicago as they sought help from Mr. Wakefield’s former colleague, the gastroenterologist Arthur Krigsman. It is not clear what treatment Krigsman prescribed. Sometime after this, the mother and caregiver began to conspire in a plan to murder Mr. Spourdalakis. When the carried out their plan, they poisoned Mr. Spourdalakis with sleeping pills. When this did not work quickly enough, the mother and caregiver stabbed him. Not once, not twice, but four times, including two stabs to the heart. When even this proved not fast enough, the mother and caregiver slit his wrist. Slit so deeply that reportedly his hand was nearly severed from his arm. When Mr. Spourdalakis finally passed, the mother and caregiver turned the knife on the family cat. After cleaning the knife, they returned it to it’s place in the kitchen. The mother and caregiver then took large doses of sleeping pills, the method they had just found to be ineffective in the murder of Mr. Spourdalakis. The father (who was divorced from the mother and living elsewhere) and an uncle tried to reach the mother that day and, finding that they could not reach her, came to the apartment. When the door was not answered, the uncle reportedly kicked it down. This action, in my view, indicates that the danger posed to the young Mr. Spourdalakis by his mother (who was reported to have started planning the murder a week in advance) was known to his extended family and they were monitoring the mother in an attempt to prevent harm.

As noted above, Andrew Wakefield inserted himself into the story. His joint venture with Polly Tommey, the Autism Media Channel, started collecting film of Mr. Spourdalakis and his mother during the hospital stay. Mr. Wakefield’s intent certainly wasn’t to document the final days of Mr. Spourdalakis. Most likely he was planning a vide similar to that for the trailer he prepared for his proposed reality Show “The Autism Team”. That video shows autistic children in meltdowns, being self-injurious. One specific child is flown from the U.K. to New York to see Arthur Krigsman (just as Mr. Spourdalakis was taken from Chicago to New York to see Krigsman). In the trailer, after visiting Krigsman the child was shown happy, playing, and the parents were shown grateful. As we know, this was not the conclusion of the Alex Spourdalakis story. Whatever Mr. Wakefield and Ms. Tommey had planned for the video they had taken, the “treat bowel disease and everyone is happy” story was not to be. Instead, he has produced a video of the “medical establishment fails family, leading to tragedy” theme. I do wonder how he managed to work that theme around the facts that the tragedy (aka brutal murder at the hands of his mother) came to pass after Mr. Spourdalakis was seen by Mr. Krigsman.

CBS News journalist Sharyl Attkisson picked up the story and aired some of the video Mr. Wakefield’s team collected in Film provides glimpse into life of autistic teen killed by his mother. What is the subject of her story? The victim? The murderers? No. It’s the film. Likely the title of the online article was not chosen by Ms. Attkisson. Whoever did chose it acted poorly.

The written piece starts out with, yes, the mother:

Chicago mom Dorothy Spourdalakis was ordered to be held without bond early this week, on the charge that she and her 14-year-old son’s caretaker, Jolanta Agata Skordzka, murdered her severely autistic son. Alex Spourdalakis was found dead in June in his bed in the River Grove, Ill., apartment he shared with his mother and Skrodzka.

When Ms. Attkisson presents the discovery of the crime scene, she again presents the murderers first, then the victim. The mother and caretaker were “barely alive themselves”. The key point–they were (and still are) alive.

When police found Alex dead at home in June, his mother and caretaker were barely alive themselves after allegedly overdosing him on medicine and stabbing him in the heart before attempting to commit suicide.

The story presents the “balance” of which group failed. Was it the medical establishment or was (as she presents in a brief clip at the end) society’s attitudes about disability and the disabled? She chose this approach rather than checking facts in depth. What options were open to the family? What is the father’s and uncle’s view, as they were apparently worried about the safety of the young Mr. Spourdalakis? What evidence is there that the diagnosis made by Krigsman is accurate. While Krigsman is well thought of in some circles, he is not without his critics nor his own history of possible ethics lapses. Did she search out what supports had been offered to the family? What they had asked for (an attorney, for example, which was provided).

The written article states, “But some in the autism advocacy community take issue with the idea that lack of help is an excuse for murder.”

Really? Only some? And is this somehow limited to the autism community? Ms. Attkisson, what is your position? Is a lack of support an excuse for murder?

But there it is, in black and white, the crux of the story: is lack of help an excuse for murder? The answer is clearly no, it is not an excuse. When did we get to the point that U.S. journalists can be discussing an “excuse” for murder?

What about the lack of help? We have to take Ms. Attkisson’s word that there was a lack of help. Because Ms. Attkisson, investigative journalist, didn’t investigate that question. Instead she presented Andrew Wakefield’s depiction of the story from the murderers. Mr. Wakefield’s word is, well, not good enough for me. People who murder their children and are trying to build a defense are not reliable sources in my opinion. But the word of the accused murderers was enough for Ms. Attkisson. She took the time to investigate the hospital where Mr. Spourdalakis was kept for 2 weeks, but she didn’t bother to look into what resources were available to the family. Was insurance coverage really denied? More importantly, if so, why?

And, yes, she takes Mr. Wakefield’s word for it. She introduces her video segment with the statement that this would be “another unexplained tragedy” if it weren’t for the video he collected.

The story notes:

Dorothy’s suicide note read, in part: Alex will no longer be “treated like an animal” or “subjected to restraints.”

He will no longer be treated like an animal. He met the same fate as the family cat. Even the cat deserved better.

As a human being, I am appalled by this story. I am appalled by the way Ms. Attkisson and CBS have given us a commercial for Andrew Wakefield’s company and failed miserably to do the basic investigative journalism needed.

Much more, as the parent of a child not so unlike Alex Spourdalakis, I am disgusted. A common phrase we hear from parents is “what will happen after I am gone?” What will happen in a world where “caregivers” are excused from murder of their charges? And I know I am not alone in my views, having discussed this with other parents of disabled children. I won’t presume to present the autistic perspective on this, but here is one account:CBS Provides Glimpse into “Documentary” Defending Autistic Teen Alex Spourdalakis’ Killers .

—
by Matt Carey

Jenny McCarthy, shilling for big tobacco

10 Aug

Not my usual style for an article title, I know, but I couldn’t think of any other way to say this.  Jenny McCarthy is now advertising for Blu e-cigarettes. Blu is owned by Lorillard, a major tobacco company.

“All the fun and none of the guilt of having a cigarette”, she says in one video. Yes, children, smoking is fun. And sexy.  Smoke an e-cigarette and you can get a date.

Fun and sexy.  Anyone else feel like we are watching an episode of Mad Men (a show about advertising in the 1960’s)?

image

After her stance on vaccines, Jenny McCarthy wouldn’t promote something that is toxic, right? Of course the health aspects have been tested, right?

Here’s a bit from the Blu FAQ.

Is blu better for me than traditional cigarettes?

blu liquid is made in the U.S. with domestic and imported ingredients by Johnson Creek Enterprises in Hartland Wisconsin; we maintain an organization that inspects product lines at all facilities daily. blu simulates the smoking experience without the tobacco smoke, ash and smell associated with traditional tobacco cigarettes. blu should not be used as a quit smoking device as it has not been approved by the FDA as a cessation device. blu eCigs are not a smoking cessation product and have not been evaluated by the Food and Drug Administration, nor are they intended to treat, prevent or cure any disease or condition.

Did you catch where they address the question of whether the health risks are reduced in e-cigarettes? That’s right, they didn’t. They didn’t point out that there are no safety studies.  You know, long term health outcomes of the sort that Jenny McCarthy says are lacking in vaccine research making such research in her view — yes — tobacco science.

What’s in the “smoke juice” used in Blu? I didn’t find it easily on their website, but here’s what the manufacturer of the liquid says

Johnson Creek Original Smoke Juice is happy to furnish our ingredient list! In fact, we list our ingredients right on the bottle. USP Grade Propylene Glycol (not in Red Oak Smoke Juice Recipe) USP Grade Vegetable Glycerin USP Grade Glycerol USP Grade Deionized water USP Grade Nicotine (except in Zero Nicotine recipe) Natural Flavors Artificial flavors USP Grade Citric Acid

“Propylene Glycol“. That’s a form of antifreeze. A form that has been approved by the FDA for some food uses. Ms. McCarthy and her team falsely claimed that vaccines contain “antifreeze”. It’s scary in vaccines but OK in an e-cigarette. Is propylene glycol scary? No. But there is heavy irony in her promoting a product using an antifreeze after using this term (falsely) as a scare tactic about vaccines.

Edit to add: The Blu website does include the ingredients and Propylene Glycol isn’t in them.

Ingredients: blu™ flavor cartridges are propylene glycol-free with six (6) key ingredients: distilled water, nicotine (when applicable), FCC grade vegetable glycerin, natural flavors, artificial flavors, and citric acid.

I’m so glad that they use high grade (USP Grade) nicotine. Only the best, right?

Here’s the proposition 65 warning on the Blu website;

| CALIFORNIA PROPOSITION 65 – Warning: This product contains nicotine, a chemical known to the state of California to cause birth defects or other reproductive harm.

I seem to recall Jenny McCarthy telling the story of how she locked herself in a hotel room so she could quit smoking when she learned she was pregnant. She believed that tobacco ingredients were harmful then. Now she’s selling a nicotine delivery system.

Jenny MCarthy is not new to promoting toxins. Back in her vaccine campaign heyday she touted the benefits of botox. In 2008 she only got a little bit (every two months). Now she’s “Team Botox“.

I will say, her move to promote e-cigarettes was unexpected. Which is different from saying I’m surprised. If someone had said, “do you think Jenny McCarthy would accept money to promote an e-cigarette nicotine delivery system”, I’d have said yes. Jenny McCarthy may not be consistent on her stories and beliefs, but she is consistent in promoting Jenny McCarthy and taking opportunities to make money.

—
By Matt Carey

Note–I posted an early draft of this article which contains errors. The original paragraph is below

“Propylene Glycol”. That would be the same substance used in vaccines that Ms. McCarthy and her team mislabelled “antifreeze”. It’s scary in vaccines but OK in an e-cigarette. Which do you think contains the greater exposure? (Hint, infants don’t carry packs of vaccines every day). Is propylene glycol scary? No. But there is heavy irony in her promoting a product using it after using this substance as a scare tactic about vaccines.

Jenny McCarthy angling for a spot on The View?

15 Jul

I don’t spend much time following celebrities. Jenny McCarthy was, for a time, an exception. She became the number one spokesperson for the idea that vaccines cause autism as well as for unproven and sometimes dangerous “therapies” for autism. She made a lot of money from autism, autism kept her name in the press and, as the money dried up, Ms. McCarthy quieted down on the topics that only a short time before she was so passionate about. Jenny McCarthy now makes news for topic like, “Jenny McCarthy ‘dating’ Donnie Wahlberg“.

New reports recently came out that Jenny McCarthy is being considered for a spot on the TV show “The View”. I saw a number of these sorts of news stories before I cancelled my news alerts. “Jenny McCarthy in talks with….for a job” They struck me as publicity and trial balloons. Attempts to get buzz going to help get the job.

If Jenny McCarthy’s publicity team are floating this as a trial balloon, they should have known the response they would get:

U.S. News and World Report: Jenny McCarthy’s Pseudoscience Has No Place on ‘The View

Slate: The View of Jenny McCarthy

Salon: Don’t put Jenny McCarthy on “The View” The “warrior mother” is dangerous for television

Atlantic: Destabilizing the Jenny McCarthy Public-Health Industrial Complex

Most discussions focus on Jenny McCarthy’s views on vaccines. She adheres to the idea that vaccines cause autism. It’s good to point out this stance but, as I’ll discuss below, I personally question why The View would be considering Jenny McCarthy given her unprofessional attitude and lack of integrity in regards to her visits on The View.

The vaccine stance has been a bit of a liability for Ms. McCarthy and her organization (Generation Rescue). They have toned down their message a great deal over recent years. Back at the time when Generation Rescue was founded, they were very upfront:

Generation Rescue believes that childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, and many other developmental delays are all misdiagnoses for mercury poisoning.

With the number 1 reason for “How was my child poisoned” being thimerosal in vaccines.

The founder of Jenny McCarthy’s autism charity famously wrote once:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

Generation Rescue both before and since Jenny McCarthy has had a focus on various “cures” for autism. They range from relatively harmless (homeopathy) to dangerous and clearly ill founded (Lupron), promoted at their parent conventions like AutismOne.

Jenny McCarthy not only promotes subjecting disabled children to dangerous therapies, she attacks those parents who don’t accept her advice in this regard.

What’s very interesting with the possible gig on The View is the fact that Jenny McCarthy has a very checkered past with that show. In her first autism book tour, the one person who had the guts to challenge Jenny McCarthy was Barbara Walters on The View. Jenny McCarthy was so angered by this that she reportedly told a rally of her supporters exactly where Barbara Walters could “stick her microphone”. (On a local autism news group, when some people proposed putting video of this event on YouTube they were discouraged from doing so. Even then people realized this was not a good move by Ms. McCarthy.)

In a later book, Jenny McCarthy told the story of her confrontation with Barbara Walters on The View, making herself into a brave “warrior” mom. Only, the story that she gave in the book was very different from the version she gave in a televised interview. In other words, at least one of the stories appears fabricated.

She also posited that Barbara Walters was jealous of Jenny McCarthy and that was the reason why Ms. Walters challenged her. Ms. McCarthy even “forgave” Ms. Walters for the incident. Barbara Walters acted like a journalist and asked Jenny McCarthy to back up her statements. Jenny McCarthy slammed Ms. Walters publicly and quite rudely. And Jenny McCarthy forgave Ms. Walters.

Seemed at the time, and still does, that Ms. McCarthy should have been apologizing, not forgiving.

In the time between the incident on The View and Ms. McCarthy offering “forgiveness”, Ms. Walters had published her biography. In it Ms. Walters disclosed that her sister was intellectually disabled. Jenny McCarthy then “understood” that Ms. Walters was jealous of the fact that she had recovered her son, while Ms. Walters’s sister did not have that opportunity. Forgiveness with a side order of condescension.

An interesting point in the “forgiveness” story. Jenny McCarthy didn’t offer forgiveness when Ms. Walters made the disclosure in her biography. No, Ms. McCarthy waited four months until her own book tour to make the statement. It doesn’t strike this observer as anything beyond a cheap publicity stunt by Ms. McCarthy.

Another interesting point is that it has since been reported that Jenny McCarthy’s “recovered” son needs a $100,000 per year school. So, tales of “forgiveness” because she had recovered her kid while Ms. Walters’s sister remained disabled her whole life fall rather flat.

I did find it interesting that when Jenny McCarthy returned years later to The View for another book tour, it was on a day when Barbara Walters was not present.

Barbara Walters is still active onscreen and behind the scenes at The View. Ms. Walters is a true pioneer of journalism. She didn’t last this long without a very thick skin, so I doubt any of the childish antics from Jenny McCarthy bother her personally. On the other hand, Ms. Walters has been able to see first hand how Jenny McCarthy puts integrity aside in favor of self promotion.

The View is not the sort of hard journalism that is the backbone of Ms. Walters’ legacy. But, one does wonder why Ms. Walters (co-producer and co-owner of The View) would take on Ms. McCarthy. Jenny McCarthy is not and never will be on par with Barbara Walters. Few of us are. But bringing Jenny McCarthy into The View would cheapen, just a bit, a lifetime of hard work and excellence by Ms. Walters.

—
By Matt Carey

Financial documents for the Canary Party

12 Jul

There seems to be a large number of groups promoting the idea that vaccines cause autism. A large number of groups who share the same principle members. SafeMinds, the National Autism Association, Generation Rescue and others come to mind. A few years ago, another group was formed, this time as a political party: the Canary Party.

The Canary Party is not a charity, so they do not file form 990’s with the IRS. They appear to not be a national political party a they are not listed with the FEC. Recently, a commenter at the Respecful Insolence blog (Narad)found that the Canary Party is organized in Minnesota and files their financial reports there.

Forms have been filed for 2011 and 2012.

The Canary Party pulled in $72,000 in 2011 and $49,000 in 2012. The major contributors are (assuming I did my sums correctly):

2011:

Jennifer Larson (Canary Party President), $40,665
Mark Blaxill (Canary Party Chairman), $15,000

2012:

Barry Segal (founder of Focus Autism): $30,000
Mark Blaxill (Canary Party Chairman), $10,000

The largest expense is for a “media consultant”, Jennifer Taylor (apparently Ginger Taylor, a blogger).

$36,600 in 2011
$9,000 in 2012

Plus many expenses for advertising and other promotional expenses.

In 2012, travel became a larger expense. For example:

On January 26, 2012, $3,399.79 for expenses with Hyatt/Four-Seasons/Hyatt
(February 2nd 2012 was the date of the “Health Freedom Expo”, where other expenses were incurred)

On February 2, 2012, $1,841.43 for expenses with Hyatt/Ritz

It’s difficult from this to tell how many people were lodged at these hotels for these dates. One expense seems more clear: On 6/15/2012, expenses attributed to Canary Party president Jennifer Larson amounted to $1,541.42 for another Health Freedom Expo hotel stay, this time at the Hilton. Health Freedom Expos are typically 3 day events.

On 10/22/2012 the party hosted a convention, with apparently a tab of $11,382.02 for Hotel/Beverages/Hotel Fees.

Nothing particularly interesting. Per another comment posted to Respectful Insolence, the association between the Canary Party and Mr. Barry Segal appears to be strained. As Mr. Segal accounted for $30,000 of the party’s $49,000 revenue in 2012, one does wonder what 2013 revenue will look like.

—
Matt Carey

Why does Jenny McCarthy need Miss Montana?

16 May

From the bottom of the ocean
To the mountains on the moon
Won’t you please come to Chicago
No one else can take your place

-Graham Nash, “Chicago”

* * *

The first autistic Miss America contestant is a cheerful 19-year-old with heart-breaking beauty and a refreshing message. She celebrates her autism, telling reporters and talk show hosts that “Being on the spectrum is not a death sentence, but a life adventure, and one that I realize has been given to me for a reason,” and “It’s amazing how people don’t accept other people just because they’re different. Being different is not something to look down on, but to be embraced. People need to understand.”

She once told Jeff Probst “There is nothing wrong with being autistic,” and “My autism doesn’t define who I am, I define my autism.”

So why has Alexis Wineman accepted Jenny McCarthy’s invitation to join a “celebrity panel” at a notorious anti-vaccine conference, breaking gluten-free bread with people who compare autism to a death sentence, and something to be despised? One possible answer can be found in her interview published on Disability Scoop last October:

‘Socializing with my classmates, even when I wanted to, was awkward to say the least. I wouldn’t get their jokes half the time. I took everything so literally,’ she told the site.

Here’s what Alexis posted on her Facebook page in January, after receiving a phone call from McCarthy:

Could it be that Alexis is following mean girl McCarthy into the lavatory for a humiliating makeover? Does she literally believe that autistic children can be “rescued” with bleach enemas, chelation, and chemical castration, all of which are “treatments” promoted by other invited speakers the AutismOne conference?

Wineman grew up in Cut Bank, Montana, one square mile of treeless plain and 2,800 hopeful souls. After second grade, Alexis’s twin sister, Amanda skipped ahead into fourth, but not Alexis. “That’s enough to make anyone feel dumb. But I got called “retarded” a lot. I really hate that word,” Alexis told Glamour Magazine. Her behavior deteriorated.

“The meltdowns lasted hours and became more frequent,” says her mother, Kim Butterworth. “We’d have to grab and hold her; she’d be as stiff as a board. It was scary. And she started melting down at school. I’d get the call: ‘We’re having a problem.'”

At age 11 she was diagnosed with PDD-NOS, after the family consulted their pastor and a therapist. “I felt so alone growing up, and I still do at times,” she told a conference on autism at the Montana State University Billings last fall. “Nobody understood what I was going through. I separated myself from my classmates and spent most of my time alone. I stayed quiet to hide my speech problems. Due to these overwhelming and daily struggles, I looked at myself as a punching bag for others, and a burden to my family.”

Her turnaround came in high school, where Alexis ran cross country, joined the drama club, and became a cheerleader. At 18, she entered the Miss Montana contest and won.

Alexis Wineman

Alexis wears her celebrity well. “We cannot cure what is not a sickness,” Miss Montana said in the video shown at the pageant. “But we can begin to understand autism, and help those with the condition to unlock the potential that lies within all of us.”

McCarthy and her business partners disagree. The AutismOne conference is a veritable trade show of unproven and questionable autism “cures”, where the hiss of hyperbaric oxygen chambers lures the credulous, and Mr. Andrew Wakefield tells starry-eyed mothers that “recovery is possible.”

So why did McCarthy reach out to Alexis? Could the invitation be part of McCarthy’s 12-step anger recovery program? The nursing school drop out and ex-MTV host is desperate to shed her anti-vaccine past, which means dissing the “angry mob” she once bragged about. She told the AP in January that she hasn’t publicly commented on vaccines in four years (it was more like two years, but oh well). Her 2011 AutismOne keynote address barely mentioned vaccines. In her 2012 speech, she was introduced by a plaintiff’s attorney who told parents “the claim that mercury doesn’t cause autism is a lie,” but McCarthy herself stayed away from the V word. Meanwhile, when she speaks of Generation Rescue (“my foundation!”), she stresses assistance to parents.

All of which raises (not begs) a serious question: Is the anti-vaccine movement growing up? Can the acceptance-and-accommodation virus find willing hosts in McCarthy’s mob? Can Alexis Wineman from Cut Bank, Montana, attract enough autism parents, and generate enough buzz, to turn Generation Rescue into a responsible and respected advocacy group?

Does McCarthy need Miss Montana? Or is the invitation as dishonest and manipulative as it appears?

 

Cross-posted at AutismNewsBeat.com

Autism Science Foundation hosts live chat with David Amaral and Jill Locke tomorrow (Friday)

19 Apr

The Autism Science Foundation hosts live chats on Fridays during April. Tomorrow they will have chats with David Amaral (of the U.C. Davis MIND Institute) at 12noon eastern time and Jill Locke (of U Penn) at 2pm eastern time. The chats can be found at the ASF website.

—
By Matt Carey

ASAN Releases Policy Brief on Organ Transplant Discrimination; Meets with Senior HHS Leaders

10 Apr

The Autistic Self Advocacy Network (ASAN) issed a policy brief last month on the subject of organ transplant discrimination. Over the past year a few cases of denial of organ transplants on the basis of disability made the news. Many more did not.

ASAN met with people in the Department of Health and Human Services (HHS) to present their brief and urge an end to discrimination in organ transplants based on disability.

The brief is:

Organ Transplantation and People with I/DD: A Review of Research, Policy and Next StepsAri Ne’eman, Autistic Self Advocacy Network
Steven Kapp, University of California, Los Angeles
Caroline Narby, Autistic Self Advocacy Network

Here is the ASAN statement:

This week, the Autistic Self Advocacy Network (ASAN) released a new policy brief on discrimination against people with intellectual and developmental disabilities in organ transplantation. In the twenty-three years since the passage of the Americans with Disabilities Act, people with disabilities have achieved much progress in securing our rights in a wide variety of settings. Unfortunately, the field of medical decision-making remains too often immune from civil rights law. In few places is this as evident as in the context of organ transplants, where our policy brief outlines widespread discriminatory practice. Many people with I/DD fail to even make it to the evaluation process, and those who do are frequently denied access to transplants on the basis of their disability. Eighteen years after the landmark Sandra Jensen case in California, it is long past time for action on this issue.

On Tuesday, ASAN, the National Disability Rights Network and Not Dead Yet met with senior leadership in the Department of Health and Human Services to urge the federal government to issue new guidance addressing discriminatory practices in organ transplantation. Our brief provides comprehensive documentation on this issue and offers next steps for regulators, legislators, funders and activists. Produced with the generous support of the Special Hope Foundation, this will be the first of several policy briefs produced by ASAN this year examining the issue of access to health care for people with intellectual and developmental disabilities.

We invite you to download a copy of Organ Transplantation and People with I/DD: A Review of Research, Policy and Next Steps on our website by clicking here. Help us spread the word about discrimination in organ transplants – together, we can achieve equal access for all of us.

Produced with support from the Special Hope Foundation

—
By Matt Carey

Lobbying, donations and the Congressional Autism Hearing

5 Mar

Last year the U. S. Congressional Committee on Government Oversight and Reform held a hearing on the government’s response to the rise in autism diagnoses. One of the people at the hearing, photographed with the Focus Autism team, is “Dr. Gary”. “Dr. Gary” appears to be Gary Kompothecras, a Florida chiropractor whose chain of offices reportedly doing $70M in business annually. Kompothecras is also the parent of two autistic children and strong proponent of the idea that vaccines are responsible for the rise in autism diagnoses. Both children were petitioners to the vaccine court for autism as a vaccine injury. (Both cases were denied due to failure to prosecute. This example was under appeal during the events laid out below.)

Mr. Kompothecras has already been linked to the effort to initiate the hearing, however this from a far from reliable source. If you aren’t familiar with this gentleman, feel free to peruse his website (the link is to google cache).

Taking that source as highly questionable, consider this. He claims “Dr Gary is very influential with the Republican Party and is friends with two US Congressmen – Buchanan and Posey.”

I won’t speak to “friends” or “very influential”, but I will point out that members of Congress Posey and Buchanan have received campaign donations from Mr. Kompothecras over the past few years. Here are donations from Mr. Kompothecras and Beth Kompothecras made to support Posey and Buchanan in 2008.

The unreliable source claims that Gary Kompothecras and Andrew Wakefield met with members of Congress Posey, Buchanan and Issa on May 1st. Essentially, he met with the two members with whom he had a past relationship plus the chair of the committee who was to hold the proposed hearing.

As an aside: I realize that Mr. Wakefield can spin a good yarn, good enough to take in even members of congress, who are rather too busy to check on his claims and credentials, but members of congress have health care legislative aides who should be able to offer advice on the fact that this man has been found guilty of unethical behavior and his research is, at best, fatally flawed.

That said, keep in mind that given the Kompothecras family’s support for Posey and Buchanan in the past, it isn’t surprising that they donated again in 2012. That doesn’t mean the timing is not interesting. The “Friends of Bill Posey” received donations on May 2nd (Mrs Kompothecras ) and Vern Buchanan for Congress on May 4th (Mrs. Kompothecras) and again on June 30th.

If you followed the links above, you may have noticed that the Kompothecras family also made donations to Darryl Issa, on May 14th. Congressman Issa, of course, is the chair of the committee which held the hearing. These appear to be the first donations to Mr. Issa from the Kompothecras family. Per our unreliable source, congressman Issa committed to hold hearings on May 18th, 4 days later.

Now there is nothing wrong with making political contributions. And if you look at Mr. Issa’s PAC, it is clear that he gets donations from around the country. It is also disingenuous to claim some shock that a congressional hearing involved lobbying and that donations were made in the same time frame. All three of these members of congress are honorable people. These details are, however, ones that the public has a right to know, hence the transparency laws which allowed me to find the donations.

It is worth noting that Mr. Wakefield obviously has a major personal and financial stake in seeing the vaccine discussion become publicly viable again. A factor I hope the members of congress weighed. It is also worth noting that Mr. Wakefield’s ideas on autism causation are flawed and that he was sanctioned for ethical lapses. Another factor I hope was weighed. If our unreliable source is accurate in revealing that Andrew Wakefield met with the members of Congress, I again ask, why would members of congress listen to him seriously? Frankly, if someone is lobbying congress and brings out someone with Mr. Wakefield’s history, I would be strongly disinclined to favor whatever position they brought forward.

I first heard of Mr. Kompothecras when a story came out (Crist backer Gary Kompothecras bullies Florida health officials) where Mr. Kompothecras was described as attempting to “bully” Florida’s health officials into allowing Mark and David Geier (yes, the Geiers) access to immunization records. Per the Miami New Times:

So it’s bound to turn heads when the man known to occasionally lend his private jet to the governor uses his political clout to try to bully Florida health officials into turning over scores of the state’s sealed immunization records. Especially when they’re for a father-son team, Dr. Mark and David Geier, infamous for injecting autistic children with Lupron, a drug used to chemically castrate prostate cancer patients and pedophiles.

For those unfamiliar with the Geiers, here’s the link again. It leads to the neurodiversity.com website where Kathleen Seidel’s investigations of the Geiers are laid out. Their work has been termed “uninterpretable” by the IOM and “intellectually dishonest” by the special masters of the vaccine court, to pick two out of many critiques. When they previously were given access to a different set of immunization records, they had their access cut after attempting to go beyond the approved study, including increasing the risk of breaching confidentiality.

For anyone wondering, I don’t think anything of the sort of improprieties in the Kompothecras/Crist news article are at play with the congressional hearing. I do think it is important to remind ourselves of past activities of Mr. Kompothecras to understand his approach to politics.

Having read a few “six degrees of separation” type articles online in the autism/vaccine discussion, and the reliance on one of the least reliable sources on the internet for some details, I’d be cautious about making too much out of this. But as far as details go, they are on one level rather interesting in adding to the stories which are online about how the hearings came to be. On the other hand, “wealthy person gains access to government officials and makes political donations” is rather a “dog bites man” story, isn’t it?

—
By Matt Carey

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