Small groups band together to attempt to derail autism research funding

21 May

The law that sets in place the structure to steer autism research is up for renewal this year. Public Law 109-406 was introduced as The Combating Autism Act in 2006. It was reauthorized in 2011. And it is up for reauthorization again this year.

The law authorizes congress to appropriate $190,000,000 per year for autism research. But there are those who would like to scuttle this effort.

A number of groups have banded together to form the “Autism Policy Reform Coalition” to oppose continuing with the law funding autism research. From The Hill:

But an upstart group known as the Autism Policy Reform Coalition (APRC) is against the bill, arguing a drastic overhaul is needed in order for the money to be used effectively.

Who are the “Autism Policy Reform Coalition”? Readers to Left Brain/Right Brain will likely recognize many of these groups. And quickly put together the link that ties them together. In case you haven’t already guess it, yes, it’s vaccines. With science against them on vaccines, they are trying to legislate their views into existence.

Many of these groups are very small. Well funded, but small. None has a truly large membership. Most if not all do not allow for their leadership to be selected by a vote of membership. In fact, for most it seems one can not join them as a member, so it’s difficult to understand how they claim to represent a large part of the autism communities. As far as I know, none have an autistic in any prominent position, much less as a leader. And yet they purport to represent the “autism community”.

While many of these groups have toned down their public statements on vaccines over the years, they are still heavily invested in the idea. One marker of their support for the idea and their lack of scientific rigor is their support for Andrew Wakefield. Mr. Wakefield is the disgraced former academic surgeon who lost his medical license for unethical behavior and whose work attempting to link the MMR vaccine with autism was declared one of the great science frauds by Time Magazine. Much more, his work has been shown to be wrong (for one example, here).

Here are the groups in the Autism Policy Coalition:

Autism is Medical

Appears to be involved with Andrew Wakefield and the failed vaccine-causation notion. They are relatively new having just received 501(c)(3) status this year.

Defending Academic Integrity and Research Foundation
Again, a new group. They appear to be in place in large part to give financial assistance to Andrew Wakefield’s lawsuit against Brian Deer and the BMJ (replacing the “Doctor Wakefield Justice Fund”).

Here’s a recent Facebook page post

D.A.I.R. Foundation is committed to integrity in academics and research and exists to support scientists, doctors, and researchers working in the best interest of the public health whose efforts have come under intense and unfair scrutiny.

At the heart of this is Dr. Andy Wakefield whose work challenged special interest groups who responded with opposition and injustice. The Weston A Price Foundation awarded Dr. Wakefield the prestigious Integrity in Science award at the 2013 Wise Traditions Conference where he was also keynote speaker at the banquet. The DAIR Foundation Fundraiser seeks to provide legal support for Dr Wakefield and others in similar situations. We welcome your support. Tickets are tax deductible and attendees receive cocktails, dinner from a Paleo-style buffet, and a copy of Dr Wakefield’s latest book. Dr. Wakefield will speak to dinner guests about his research and his documentary movie.

To purchase tickets visit the DAIR Foundation website and click on the envelope icon next to the text Orlando Fundraiser Event

It is unclear how one would become a member, voting or not, of DAIR, nor how their leadership is selected.

Generation Rescue

Generation Rescue is currently run by Jenny McCarthy, who has been very vocal in her support of the vaccine/autism link. When Andrew Wakefield lost his job at Thoughtful House, Generation Rescue stepped up with a $100,000 donation to his “Strategic Autism Initiative”.

Generation Rescue’s founder wrote:

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.

I can not find from their website whether one can join as a member (voting or not) or how their leadership is selected.

National Autism Association

Recently ran into controversy over a fundraiser for their stance on vaccines. Supporter of Andrew Wakefield. They state on their website:

The National Autism Association believes:
Vaccinations can trigger or exacerbate autism in some, if not many, children, especially those who are genetically predisposed to immune, autoimmune or inflammatory conditions.

One can become a dues-paying member of the NAA. Their most recent IRS form 990 shows that they took in $4,775 in dues. That would be fewer than 150 dues paying members at their $35 tier.

I can not see how leadership is selected; whether the membership is allowed to vote in open elections.

SafeMinds

One of the first organizations formed around the idea that vaccines cause autism. In specific, SafeMinds is focused on thimerosal in vaccines. The leadership has many of the same people over the past decade and I can’t see where one could join and whether if members are allowed, if they are allowed to vote for leadership.

Talk About Curing Autism

Another org that is strongly behind the vaccine-autism link.
(and here). It’s unclear if or how one would become a voting member. The leadership has been largely unchanged since founding.

The Thinking Mom’s Revolution

While I’m very fond of blogs, I don’t see them as organizations. Again, where does one join or vote for leadership? How does this blog count membership? Facebook likes?

I believe every one of the above groups considers Andrew Wakefield to be a hero, ignoring his proved ethical lapses (he was stripped of his medical license and the fact that his ideas on vaccines and autism have been shown to be wrong (e.g. Lack of Association between Measles Virus Vaccine and Autism with Enteropathy: A Case-Control Study to select one of many)

I am a public member to the IACC, which was set up by the reathorization in 2011. All views above (and anywhere) are my own. While there are certainly things I would hope could be done differently in the way the U.S. manages autism research, handing control over to a few small groups so they can push a failed agenda on vaccines is not the direction we should go. Scuttling the reauthorization because support is not going into further research on this failed idea is also not the direction we need to take. Not at all.

It’s very telling that these groups for the most part hide or downplay their position on vaccines. The NAA, for example, recently ran into controversy about their stance and lost a fundraising opportunity with the national restaurant chain Chilis. The NAA leadership paid lip service to effect that the statements on their website are old views, but those statements remain. They know this position is a liability in public. But rather than accept that the view is a liability for good reason, they chose to downplay their views.

I don’t know if many in the legislature are giving them a serious listen, but I hope not. These groups do not represent the autism communities. They certainly are not showing an effective leadership, working to scuttle a law and lose hundreds of millions of dollars in funding if their own failed ideas are not supported.


By Matt Carey

9 Responses to “Small groups band together to attempt to derail autism research funding”

  1. Vincent Iannelli, MD May 21, 2014 at 23:51 #

    Thank you. It is certainly nice to know who is behind that coalition. It offers a great insight into what their agenda will be in getting any new legislation passed.

    • Sullivan (Matt Carey) May 22, 2014 at 00:08 #

      They put together a coalition for the last reauthorization:

      http://www.ageofautism.com/2010/10/announcing-the-combating-autism-act-reauthorization-coalition.html

      Age of Autism
      Autism Action Network
      Autism One
      The Autism Research Institute
      The Autism Society of Connecticut
      The Autism Society of Greater Phoenix
      Elizabeth Birt Center for Autism Law and Advocacy
      FoggyRock
      Generation Rescue
      Greater Brunswick Special Families
      National Autism Association
      SafeMinds
      Talk About Curing Autism
      The Pilot House

  2. psychtld May 22, 2014 at 01:29 #

    Sadly, my only question here is: why am I not surprised?

    It’s the same old idiots again with the same stupid ideas and, if they get their (collective) way, than the same shitty stuff will happen again that happened before – and was chronicled in detail on this very blog and others.

  3. Science Mom May 22, 2014 at 01:43 #

    Another incestuous mashup of the same awful people who have co-opted autism advocacy to further their warped, self-serving agenda. We have Lisa Goes of “Autism is Medical” aka “The Rev” on Thinking Moms’ Revolution who was at the helm of exploiting Alex Spourdalakis, aided and abetted by none other than Andrew Jeremy Wakefield. We have Katie Wright, Vice President of National Autism Association and incessant whiner about Autism Speaks. And on it goes; same shitty players, different day.

    I would also like to add that in addition to the zombie vaccine causation of autism they keep pushing, they are also the most outspoken and purveyors of abusive “biomed treatments” inflicted on autistic children in hopes of “recovering” them. These people need to be kept far away from any decision-making regarding funding for autism research and any politician dumb enough to take up their cause should be marginalised.

  4. Lawrence May 22, 2014 at 13:22 #

    You’d think, that if the “issue” was as big as the anti-vax militia claims, that they would have a lot more people involved, instead of all of the usual suspects….

  5. Sarah Collett May 22, 2014 at 15:02 #

    I have 14 y/o and 10 y/o sons with autism. I never believed the whole vaccine thing since the older one had his mmr vaccine after he got high fevers and regressed. That said…I have been doing my own research ever since.

    Did you know that when metals are in ground sprayed with Roundup, that it takes over 20 yrs for half of it to be eliminated? As opposed to 47 days without metals in ground (and there are metals in almost all soil). And causes kidney failure? This article explains well – http://www.sott.net/article/274682-Monsantos-Roundup-may-be-responsible-for-the-deaths-of-tens-of-thousands-of-farmers-around-the-world

    Roundup is made by Monsanto who has had many executives become higher ups in the FDA. Monsanto is also a huge player in the GMO field (watch movie Fed Up). China, who puts lead in our babies’ toys, won’t import our GMO foods. Most other countries dont want anything to do with them either!

    So our FDA is run by producers of toxic foods and toxic herbicides. And also by Big Pharma reps who are raking in billion$ each year. If we’re healthy, how much do they stand to lose when we no longer need their meds? And vaccines? And WHY do they need to add aluminum and thimerosal to those? In Science its a huge deal if a thermometer breaks, but not a huge deal to inject it in ourselves and our newborn babies???

    Now put it all together – we’re injecting ourselves with metals (in the name of health) and eating modified foods that are sprayed with a chemical that causes kidney failure when mixed with…metals. All of this done by our safety regulatory agency which appoints those from the same businesses it’s supposed to regulate!!!

    I used to think the whole vaccine stuff was crap, along with the metal chelation and gluten and gmo theories. But honestly this adds up correctly more than anything else I’ve seen. Some real “food” for thought….

    http://nsnbc.me/2013/05/10/the-vaccine-hoax-is-over-freedom-of-information-act-documents-from-uk-reveal-30-years-of-coverup/

    One last point – in the 1400s scientists KNEW the world was flat. Wasn’t the first or last time they were wrong (proof – just look at all the medical lawsuit commercials). When politics and business are involved in science, there will be the accompanying misinformation and propoganda. Still not liking my view? Look up the Tuskegee Syphilis experiment and then tell me you still believe the FDA, CDC, Big Pharma and Big Brother have our best interests in mind….

  6. Nicole Boullé Diolot July 1, 2014 at 20:45 #

    Never heard of this coalition beforebut thanks for the info.

    Is one mother who does think vaccines are the cause with regression on video AFTER the SECOND MMR vaccine.

    Why do people here think vaccines and associateddrugs are not responsible?

    And what do they think is responsible?

    Bear in mind it took more than 100 years to find the cause of PINKS DISEASE.

    And maybe there were other as yet unrecognised other adverse health effects such as POLIO?

    Again the research was done and it appears EVERY vaccine caused problems.

    The second MMR being the final straw that left changes impossible to ignore.

    The child has since been recovered but not I think from an autism vaccine cure which is being developed!

    • Chris July 1, 2014 at 21:24 #

      “Why do people here think vaccines and associateddrugs are not responsible?”

      Vaccine Safety: Examine the Evidence

      “ear in mind it took more than 100 years to find the cause of PINKS DISEASE.”

      Do you seriously think science and medicine are the same now as it was in the 1960s? Do please explain why there has been no scientific progress in the past fifty years.

      “Again the research was done and it appears EVERY vaccine caused problems.”

      Please provide the PubMed indexed studies by reputable qualified researchers that show that vaccines carry more risk than the actual diseases. YouTube videos are not scientific evidence.

Trackbacks/Pingbacks

  1. Has the National Autism Assocation left the Autism Policy Reform Coalition? | Left Brain Right Brain - July 11, 2014

    […] There’s a group working to change the law reauthorizing Federal autism research. They haven’t been very successful so far and, frankly, that’s OK with me. That group, or coalition, calls itself the Autism Policy Reform Coalition. The coalition’s member groups are small and focused on the idea that vaccines cause autism. […]

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