Over $20k in donations to Congressman Posey and now people expect another hearing

7 Feb

Remember a few years back when Representative Darrell Issa held autism hearings? One in 2012 and one in 2014. As chair of the House Committee on Oversight and Government Reform, he was apparently able to make that happen, even if he didn’t show up for the second hearing. It turned out that groups that promote the failed idea that vaccines caused an autism epidemic had done a fair bit of lobbying, including getting Andrew Wakefield (of all people) to meet with and dine with the one or more members of congress. And then there’s the fact that at least one activist in the vaccines-cause-autism cause had made rather significant ($40,000) donations to congressman Issa.

Even with the heavy lobbying and donations, neither Oversight hearing was quite what these groups wanted. The first only one of their advocates testified, and in the second hearing none. These lobbying groups did produce video clips of members of congress grilling members of the CDC, especially Congressman Posey reading questions and statements apparently prepared for him by these lobbyists. These video clips have been useful for these groups but, seriously, a full on congressional hearing to produce YouTube videos for the donors to the chairman? That’s the sort of wasted resources that Oversight is supposed to prevent, not create.

Last fall many of those pushing the idea of vaccine causation really wanted to use the leaks by CDC researcher William Thompson to get another congressional hearing. A hearing that would focus on vaccines (since the first two hearings held by Oversight did not). Or, to put it simply, one which could stay in their control. That didn’t happen, but that doesn’t mean people have given up hope for a hearing.

It has become clear over the past year that whatever influence these lobbying groups had gained with Representative Issa, that influence had waned. The second Oversight hearing included no public representatives and Mr. Issa was not even present. Further, fundraising efforts no longer focus on Mr. Issa.

Attention has shifted to Mr. Posey, a representative from Florida. A fundraiser was held for Mr. Posey last year.

A recent story claims that a new hearing is in the works. This time in House Science Committee. Coincidentally, Mr. Posey sits on the Science Committee. Mr. Posey has been a friend to the vaccines-cause-autism groups for some time, and sat in on the Oversight hearings. Last year’s fundraiser was an interesting event for many reasons. First, Mr. Posey was in a very safe race, so he wasn’t really in need of donations to win. Second, the people putting on the fundraiser were mostly (if not all) from outside of the Congressman’s district. Third, one of the primary people organizing the fundraiser was the same person who had donated about $40,000 to Congressman Issa.

Let’s take a look again at the people listed as donors for that fundraiser:

Jennifer Larson of the Canary Party and Health Freedom
Sallie Bernard of Safeminds and Autism Speaks
JB Handley of Generation Rescue
Tony Lyons of Shy[sic] Horse Publishing
Barry Segal of Focus Autism
Mark Blaxill of the Canary Party and Health Freedom
Dr. Gary Kompothecras
Teri Costigan

I went to the Federal Elections Commission website and OpenSecrets.org and checked for donations from these individuals to Congressman Posey.

Jennifer Larson, 3 donations for $5200 total in 2014

Sallie Bernard, $1000

JB Handley, $1000

Barry Segal, $2600

Mark Blaxill $5000

Gary Kompothecras and his wife, $5200

If Terri Costigan is Theresa Costigan, then here’s another $1000

I did not find donations from Mr. Lyons

That’s about $21,000.

Of course there could be more donations other than the people advertised before the event. For example, there are also two donations from a Mary Lang, totaling $5000. There is a Mary Lang from the same city who runs an autism school and who has spoken at the AutismOne parent convention (AutismOne promotes heavily the idea that autism and vaccines are linked).

If those donations are also part of this fundraising effort, that would bring the total accounted for so far to $26,000.

If you go to the story that is claiming a hearing is in the works, it does appear to be still in the “wishful thinking” stage. The article doesn’t give any recent quotes from Mr. Thompson and quotes a staffer for Congressman Posey as stating “We’re working with the Science Committee to get a hearing”.

Representative Posey is on the Science Committee and the Subcommittee on Oversight. And people interested in a Congressional hearing organized a fundraising event for the representative in an election year where he was an almost sure win. And collected over $20,000 in that event.

Are the fundraiser and hopes for a hearing connected? Or is it just a coincidence that people flew from all over the U.S. to attend a fundraiser dinner in Florida and later push for a hearing in that same Representative’s committee? Decide for yourself. I don’t see it as coincidence.

I find a few more points worth noting. First, Generation Rescue and the Age of Autism blog put out a call for people to show support for Representative Posey. The donation link given states that:

Federal law requires us to use our best efforts to collect and report the name, mailing address, occupation and name of employer for each individual who contributions exceed $200 in an election cycle

Records available on FEC.gov and OpenSecrets.org show donations as small as $25 per individual.

I don’t see a large influx of donations in the record for Mr. Posey. I don’t see donations from, say Jenny (Jennifer) McCarthy of Generation Rescue nor Candace McDonald, executive director for GR. I don’t see donations from the bloggers at the Age of Autism. Perhaps I missed them or perhaps they were too small to be recorded. Or perhaps there just wasn’t a large turnout. There isn’t a large number of donors from out of state around the time of the Age of Autism call. Out of state donors would indicate that a nationwide call had an effect.

I also didn’t see any indication that many people showed up for the fundraiser outside of the group noted in the pre-event publicity.

The last point I find interesting is this: Congressman Posey is still not a member of the Congressional Autism Caucus. Nor have I seen him act as a strong supporter of autism related legislation.


By Matt Carey

CNN: The money behind the vaccine skeptics

6 Feb

CNN Money has a short video up that makes a point that a few of us have been making for the past few years: much of the vaccine antagonistic message is funded by a few wealthy people. A good discussion can be found at A Snapshot of the Deep Pockets of the Anti-Vaccine Movement on Haprocrates Speaks. The CNN piece is called “The money behind the vaccine skeptics“. I can’t get the video to embed here, but one can find it here.

Here’s a screenshot from CNN showing the organizations, people and money that CNN discusses (click to enlarge)

cnn money

CNN points out that the self-styled National Vaccine Information Center and others (such as Chris Shaw’s group at the University of British Columbia) get a lot of money from the Dwoskin family. The Dwoskin Family Foundation told CNN that they are not antivaccine but are, instead, advocates for safer vaccines. It’s a story we hear a lot.

Claire Dwoskin is or was a board member of the NVIC and made this statement about vaccines. John Stossel had aired a piece about how his daughter had fought off a whooping cough infection and in her response to one of his producers she stated:

What his daughter went through is NOTHING compared to what the families of autistic children go through every day of their lives. No disease can match this record of human devastation. Vaccines are a holocaust of poison on our children’s brains and immune systems. Shame on you all.

I’m not sure how that sentiment fits in with being “advocates for safer vaccines”. One has to accept that vaccines are safe before advocating for safer vaccines.

Also mentioned is Barry Segal who funds Focus Autism (now Focus for Health) and A Shot of Truth. And Generation Rescue’s JB Handley and Jenny McCarthy. Both Focus Autism and Generation Rescue are noted for funding Andrew Wakefield’s “Strategic Autism Initiative”. All these groups are discussed in previous articles here at Left Brain/Right Brain.

The piece is short and perhaps that’s why they don’t mention Generation Rescue’s hundreds of thousands of dollars spent on full page ads claiming vaccines cause autism, or their poorly performed phone survey on vaccines. Lots of money spent on promoting fear and distrust of vaccines.

I’ve never seen evidence of these groups actually funding work into safer vaccines. I’ve never seen, say, funding for research into a new vaccine or even something simple like improved storage and transportation for vaccines into the developing world to reduce the use of thimerosal, a preservative these groups claim (without good evidence) cause autism and other disabilities.


Matt Carey

Jenny McCarthy tells the story two different ways…again

29 Jan

Yep, this doesn’t have anything to do with autism. Well, aside from the fact that we will discuss how one public face for autism is once again showing that her stories don’t match over time. You see, Jenny McCarthy has a reality TV show now and the story of her divorce presented in that show doesn’t match what she wrote in her book 8 years ago. I found the new story in a recent article in the Washington Post: Jenny McCarthy tries to mend her anti-vaccine reputation with reality TV. It’s too little, too late in which Emily Yahr writes:

The show is filled with such heart-to-hearts, with McCarthy recounting her ordeals as a single mom, starting with her ex filing for divorce in 2005 the same week that Evan was diagnosed with autism.

Now, it’s been a while since I read Jenny McCarthy’s “Louder than words” book. A long while, but that statement didn’t strike me as consistent with what she wrote in her book. The sentiment is the same: harsh on her kid’s father while putting herself in a good light, but the details didn’t match.

What did she say in her 2007 book? She says that she asked for the divorce. She was the mommy warrior, taking charge in that book. Now in her reality show she’s the object of sympathy, dumped by her husband just when she needed him most.

LTW-divorce

In fact, if you read the book, she talks about thinking about divorce for some time before she finally asked for it. Because that whole “same week as the diagnosis” thing in the TV show isn’t what she wrote in 2007 either. Between the autism diagnosis and her asking for a divorce, there are weeks, if not months of stories in her book. Stories that include Ms. McCarthy asking her husband to leave, and him refusing.

Who knows what the actual story was. All we hear is the story that fits the image she wants to portray at the moment. Her ex husband is taking the high road and not returning fire.

Oh, and if you are worried about how her son took the divorce, don’t. According to Ms. McCarthy, autism renders one incapable “emotionally connecting” with such events.

LTW-downplay-evan-reaction

Sorry to be sarcastic there. But, really, Ms. McCarthy? Autism renders one incapable of emotionally connecting with what was going on? Couldn’t be that the kid was unable to understand why his mother was making his father leave, just as any kid would?

No real surprises here. Ms. McCarthy has been inconsistent over the years. She had multiple stories of her first encounter with Barbara Walters when Ms. McCarthy was a guest on The View. She has informed us that her son is no longer autistic. Then, a few years later, she tells us that he is. (Jenny McCarthy Slams Rumor That Her 11-Year-Old Son Evan Doesn’t Have Autism). She hammers away at vaccines, but tells us she’s pro-vaccine. And to cap it all, she heads an autism charity that focuses on treatment, but won’t speak out against the faux treatments (like bleach enemas) that are promoted at her orgs conventions.


by Matt Carey

Measles are back but where is Jenny McCarthy?

28 Jan

It takes a lot of courage to stand up and make yourself heard on unpopular topics. But it’s only really courageous if you are willing to accept responsibility for being wrong. Jenny McCarthy stood up. She made herself heard. In the process she got a lot of media attention, led a march on Washington (the Green Our Vaccines rally), and sold a lot of books. That was years ago. Now we are seeing the outbreaks of disease that so many, even Ms. McCarthy, predicted based on the path she set. Back then she at least had the guts to say, “it’s not my fault” (I disagree). Now she’s just absent from the public’s eye on this topic. Instead we get her new reality show.

Today, a measles outbreak originating in Jenny McCarthy’s old backyard (southern California) has reached about 100 people infected (50 in the state, 23 more whose connection to the epicenter of the outbreak is unknown and more out of state). And, no comment from Ms. McCarthy. But she wasn’t always so quiet. Consider this statement from an interview in Time Magazine:

I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f___ing fault that the diseases are coming back. They’re making a product that’s s___. If you give us a safe vaccine, we’ll use it. It shouldn’t be polio versus autism.

The idea that somehow a resurgence of disease would lead to a change in vaccines didn’t make sense to me back then. It seemed like some nasty game of “chicken” where Ms. McCarthy was going to frighten enough people about vaccines that outbreaks would be possible. Frighten with statements like “they’re making a product that’s shit” and that the vaccines are not safe. Somehow, once this fear was instilled and the drop in vaccination rates happened, outbreaks would happen and these would prove her point that the vaccines are “shit” and the vaccines would be reinvented.

Apparently Ms. McCarthy realized that this logic wasn’t sound as she started distancing herself from the vaccine message years ago. Instead of being at the forefront of her movement today, ready to force the changes she predicted, she brings handlers to interviews to deflect questions on vaccines. She points people to her nonpology and nosplenation of her views in an op-ed published by the Chicago Sun Times, Jenny McCarthy: The gray area on vaccines

Here’s a defensive paragraph (and a straw man argument) in that op-ed:

“People have the misconception that we want to eliminate vaccines,” I told Time Magazine science editor Jeffrey Kluger in 2009. “Please understand that we are not an anti-vaccine group. We are demanding safe vaccines. We want to reduce the schedule and reduce the toxins.”

Here’s the thing. Many people have called out Jenny McCarthy over the years for her irresponsible statements about vaccines. She spread a lot of fear. One doesn’t read “They’re making a product that’s shit” or a correction of that view at the Sun Times. One doesn’t hear blanket statements that vaccines are all unsafe (“If you give us a safe vaccine, we’ll use it.”) One doesn’t read her statements that vaccines are behind the rise in diagnosed autism rates. One doesn’t hear her state that if she had another child, she wouldn’t vaccinate (a statement she made back when she was more vocal). No, all we get is her “grey area” on vaccines.

Also, not comment about the impending outbreaks.

Which brings me back to: where’s the courage in hiding and dodging the consequences of your actions, Ms. McCarthy? Are you going to point me back to your claim that “it’s not my fault” made on Larry King Live?

KING: Isn’t the problem here, Jenny, that people sometimes listen with one ear are going to panic. And not vaccine at all?

MCCARTHY: Probably. But guess what? It’s not my fault. The reason why they’re not vaccinating is because the vaccines are not safe. Make a better product and then parents will vaccinate.

I didn’t buy it then, I don’t buy it now.

And a similar sentiment

KING: Probably due to you, jenny, and programs like this, the percentage of children getting vaccinations is dropping.
Do you think that’s good?

MCCARTHY: I think it’s only good because it’s the only thing that’s going to shake up the CDC to do something about it.

Yes, they and others have been doing something about “it”. It being the drop in vaccination rates, not the alleged problems with vaccines you were intending. Many people have spent a lot of time trying to prevent or reduce the outbreaks we are seeing now. The question is why weren’t you working on avoiding this?

As I stated at the outset, it’s only courageous to stand up against prevailing opinion if you are willing to take responsibility and fix problems if/when you are proved wrong.

Ms. McCarthy, you were wrong. You were wrong to spread fear. And you can’t get out of it with a simple “it’s not my fault”. It is partly your fault that outbreaks are happening.

And are these outbreaks causing people to accept your position and make the changes you asked for?

No.

And all this doesn’t even touch on the problems of your promotion of unsafe “therapies” for autism, an issue much closer to my heart.


By Matt Carey

Autism and mercury: never held a lot of interest, and now almost none

25 Jan

10 years ago if one went into online discussions about autism, one would find those discussions dominated by parents and one would find a few parents in those discussions trying to dominate the discussions with comments about how autism is caused by mercury in vaccines. David Kirby’s flawed book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy came out in 2006. Robert Kennedy Jr.’s even more flawed article “Deadly Immunity” had come out in 2005. Both caused a stir, no doubt. Kirby got a best seller out of it and there were even talks of a movie. But even then, only small fraction of parents were engaging in chelation of their children (thankfully a small number, but it should have never been used as an autism therapy). But, what the autism/mercury movement lacked in numbers they made up for with volume. Aided by some wealthy people who made sure the idea got publicity.

But, how much interest has there really been in the autism and mercury? And where are we now?

I used a simple method to look at interest: Google trends. Google Trends gives us a measure of how often a search term is used over time.

So, what does the trend look like for the search terms autism mercury? (click to enlarge)

Autism Mercury

One sees those spikes in the 2005-06 time frame. But what since? Aside from some noise, a steady decline. People just aren’t searching on autism and mercury much anymore.

And “much” is a relative term. Let’s consider autism as a search term on it’s own. (Click to enlarge)

autism

Lot’s of spikes, but interest is relatively flat over time. So the drop in the “mercury autism” search isn’t due to a drop in autism interest. Sure, some people are likely just entering “autism” and looking for autism and mercury, but, still, interest is way down for mercury.

One thing about Google trends is that they normalize their graphs. They take the highest interest level and set that at 100. So the two graphs above don’t tell us how the “autism mercury” search compares with interest in autism in general. Let’s graph them both, shall we? (click to enlarge)

autism and autism mercury comparison

Blue is autism. Red autism mercury. Yes, that line at the bottom that is so small you can’t see the trend at all is autism mercury. And that’s the point that I found most interesting. For all the noise made by the “mercury moms” in the past, the mercury idea was never as big a movement as they would like you to believe.


By Matt

From NIMH: Director’s Blog: Childhood and Beyond – Services Research for ASD

23 Jan

I realized that I forgot to actually publish this. This is an article written by Tom Insel (director of the U.S. National Institute of Mental Health and chair of the IACC). This article was written last year. I copy it in its entirety here. As a government publication, I believe it is OK to reproduce it.

From NIMH: Director’s Blog: Childhood and Beyond – Services Research for ASD


On August 8, President Obama signed into law the Autism CARES Act (for Collaboration, Accountability, Research, Education and Support). The law ensures the continued work of the Interagency Autism Coordinating Committee (IACC), but it also brings new opportunities to focus attention on an area of concern for many parents—what happens when their children with autism spectrum disorder (ASD) mature into adulthood? Navigating the landscape of interventions and services is difficult enough when a child with ASD is at home with his or her parents, but older youth and adults have to find ways to negotiate new and often more complex challenges: post-secondary education, employment, housing, and the evolving demands for social functioning. The problem: services are fragmented, difficult to identify and obtain, and may lack the needed research evidence to qualify for coverage under healthcare plans.

Last year, NIMH solicited grant applications for research to address these problems.1 This month, 12 grants were awarded for projects to develop and test the effectiveness of strategies to ensure that children aged 0-2, youth (within 2 years of leaving secondary education), and adults not only have access to services, but that diagnosis, intervention, and connection to services would be built into routine care. Achieving those outcomes requires coordination across a number of settings—primary care, social services and other community support agencies, education systems, vocational and disability programs, and private health care funding. The models to be developed and tested must be effective across community and cultural settings in order to reach the broadest number of people with ASD and to reduce or eliminate disparities in access to care. The funded projects will evaluate the success of efforts to provide services to the broadest population of people with ASD, including those from ethnically diverse and low-income populations.

Research has shown that early intervention can improve the social and language abilities of children with ASD. Five of these newly funded projects will address the essential next step: how to ensure that every child who would benefit from intervention gets it. The new projects are an effort to show how best practices identified by research can be incorporated into mainstream care.

Connecting children with ASD to interventions and services is an urgent need; so also is providing support for the increasing number of young people and adults with ASD, some of whom were not diagnosed until adulthood, after years of struggling with independent functioning. Among all age groups with ASD there are widely varying capabilities that require personalized supports for optimal functioning. This service delivery challenge is one that the newly funded grants are designed to address: four are aimed at transition age youth; three at adults with ASD.

Exploring the biological underpinnings of ASD is important, but research also has a role to play in testing what services and supports can demonstrably improve quality of life in the short term for people with ASD. Coincidentally, on the same day that we announced the NIMH grants, Drexel University in Philadelphia announced an anonymous gift of $3.6 million to its A.J. Drexel Autism Institute  to launch new initiatives addressing quality of life issues for people with ASD across the lifespan. This work will encompass research on the effectiveness of existing services and look at innovative approaches to providing services for persons of all ages with autism.

What’s the vision? Every and any child or adult with ASD will be connected to appropriate and state of the art interventions and services. The ability to access care should ultimately depend not on the savvy, resources, and tenacity of families but on the broad availability of high quality, evidence-based service systems addressing unmet needs. With new funding from NIMH and from an anonymous private donor, we are beginning to realize that vision.

References

1 National Institute of Mental Health. RFA-MH-14-100. Services Research for Autism Spectrum Disorder across the Lifespan (ServASD): Research on Early Identification and Linkage to Services for ASD (R01) . 2013 May.

National Institute of Mental Health. RFA-MH-14-101. Services Research for Autism Spectrum Disorder across the Lifespan (ServASD): Pilot Research on Services for Transition-Age Youth (R34) . 2013 May.

National Institute of Mental Health. RFA-MH-14-102. Services Research for Autism Spectrum Disorders across the Lifespan (ServASD): Pilot Studies of Services Strategies for Adults with ASD (R34) . 2013 May.

No, gastrointestinal symptoms are not a sign that autism is environmentally caused

21 Jan

There is a great deal of misinformation in the vaccines-caused-an-autism-epidemic message. The most commonly discussed misinformation is the fear that is spread about vaccines. But there is also a great deal of misinformation about autism causation and biology. For example, it is often stated that environmentally derived disabilities can be treated and that genetically derived disabilities can not. Some of the recent proposed treatments for autism have come from studies of fragile-X syndrome (a genetic condition with a high prevalence of autism). People with Down Syndrome are living longer and more healthy lives due to improvements in treatment. Another misunderstanding that get promoted is that co-morbid conditions, especially gastrointestinal symptoms, in an individual indicate that his/her autism is a result of environmental influences. Much of this impression likely results from the work of Andrew Wakefield, who tried to tie autism, GI disease and the MMR vaccine together.

While it has been long known that this “GI disease means environmental causation” idea is false, a recent paper helps to illustrate that. Gastrointestinal problems in 15q duplication syndrome discusses how gastrointestinal problems are very prevalent in individuals with the genetic 15q duplication syndrome. 15q duplication syndrome, like fragile-X, is a condition with a high prevalence of autism. About 80% of people with 15q duplication syndrome have GI problems, and this number is the same whether or not the individuals also have an autism diagnosis.

Chromosome 15q duplication syndrome (Dup15q syndrome) is a neurodevelopmental disorder involving copy number gains of the maternal chromosome 15q11.2-q13 region, characterized by intellectual disability, developmental delay, autism spectrum disorder (ASD), and epilepsy. Gastrointestinal (GI) problems in Dup15q syndrome have been reported only rarely, mostly focused on neonatal feeding difficulties. A retrospective review of the medical records of 46 patients with Dup15q syndrome was conducted to assess GI issues and their treatments in this population. GI symptoms were present in 76.7% of subjects with an isodicentric duplication and 87.5% with an interstitial duplication. There was no clear association between GI issues and ASD, with symptoms occurring in 78.9% of all subjects and 78.2% of ASD subjects. The most commonly reported symptoms were gastroesophageal reflux (56.7%) and constipation (60%), with 30% of subjects reporting both. The most common treatments were polyethylene glycol for constipation and proton pump inhibitors for reflux. Behaviors such as irritability and aggressiveness improved with treatment of GI symptoms in several subjects. The results indicate that GI symptoms are common in Dup15q syndrome and may have an atypical presentation. Diagnosis may be difficult, especially in individuals who are nonverbal or minimally verbal, so increased awareness is critical for early diagnosis and treatment.

Genetic conditions are frequently multisystemic. Consider Down Syndrome:

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives -

It seems to be a relatively small point I know. It is a topic that I see come up a great deal. And given the guilt that is instilled in parents and the way that the vaccine-causation idea is used as a hook for people selling useless and often risky alternative treatments, it really isn’t such a small point.


By Matt Carey

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