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.
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:
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 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.
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.
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.
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