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IACC comment time: No more procrastinating!

21 Aug

If you are like me you have put off submitting comments to the IACC.

If you are like me you need a reminder.

If you are like me you are in danger of missing the deadline.

Any thoughts about autism research? Let them know. Let them know if you think they are doing a good job or a bad job. Let them know if you think they should put more or less effort into any area.

Let them know here.

You don’t have to answer all the questions. You don’t even really have to stick to their format (if you hit “continue a few times, you get to an they even have an “other information” question).

I was going to try to write this without referencing groups that have opinions I disagree with. However, here is a comment from the Age of Autism blog on the IACC:

Answering their questions made me ill. The idea that their research intiatives include “where do I turn for help” and “what does the future hold”. What a ridiculous drain and distraction from important things such as treatment and prevention.

“What the future holds” is the category for adults with autism. Only 5% of research funding goes towards such research.

Even if the research funding wasn’t that small:

If you feel, like I do, that research into areas such as services for autistic adolescents and adults are important. If you feel that there is room for anything beyond just “treatment and prevention”. If you don’t want your opinion dismissed as “..a ridiculous drain and distraction from important things…”, the time to be heard is now.


It only takes a minute.

Autism and Vaccines: IACC and NVAC met on July 15

8 Aug

Do vaccines cause autism? That is a question which dominates much time (some would say too much time) on the Interagency Autism Coordinating Committee (IACC). The last full meeting (July 15) was partially devoted to the question, with a presentation by the National Vaccine Advisory Committee (NVAC).

I try to listen to as much of the IACC as I can. I figured this meeting would be a big one, with time devoted to the vaccine causation question and all.

But this time I just didn’t have the time. When I called in the vaccine presentation was already over. After the meeting I cringed waiting to hear the vaccine spin from certain groups. Oddly, the vaccines-cause-autism groups were silent on the issue. The only discussion I have read so far about the meeting involves the fact that the meeting ended early and some people weren’t able to make public comments (observations about this at the bottom of this post)

One reason I was interested in what NVAC had to say is that people like David Kirby have been cherry picking the NVAC statements and, through artful omissions, helping to keep the epidemic alive.

For anyone who doesn’t know: David Kirby wrote a book: Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy. As time has gone on, the phrases “mercury in vaccines” and “epidemic” are just conveniently left out of Mr. Kirby’s blog posts. That doesn’t mean he has stopped supporting the epidemic notion. He has always had a sort of passive-aggressive approach to the epidemic. He’s just trying to “spark a national debate.” Well, that dodge doesn’t work with me.

Recently Mr. Kirby hasrelied on statements by the NVAC to make his case. In a recent blog post, he opened with:

It is not accurate for members of the media to report that the link between vaccines and autism has been “disproven.” This is especially true in light of recent news from the National Vaccine Advisory Committee – and a series of other news items from the Federal Court of Claims, Federal health agencies, leading universities and top autism researchers around the country.

Given this background, I was expecting the IACC/NVAC meeting to be full of talk about epidemics and mercury…at least from the post-meeting commentary.

Luckily, someone sent me the slides from the meeting.

So, with that long introduction, let’s look at the quotes NVAC used for their own discussion of vaccines and autism in the IACC meeting. Shall we?

“The NVAC also notes the public engagement process identified public concern (Appendix 2) related to thimerosal, particularly with respect to autism/ASD. The NVAC is assured by the many epidemiological studies of the effects of mercury exposure done in a variety of populations, which have demonstrated that thimerosal in vaccines is not associated with autism spectrum disorders in the general population.”

…a small and specific subset of the general population (such as those with mitochondrial dysfunction) may be at elevated risk of reduced neurological functioning, possibly including developing ASD, subsequent to vaccination.

In the context of vaccination research, the ASD clinical subset of particular interest is regressive autism

Vaccination almost certainly does not account for the recent rise in ASD diagnoses; however, public concern regarding vaccines and autism coupled with the prevalence and severity of ASD warrant additional study in well defined subpopulations.

(note, there are four more quotes on page 30, in the “additional slides” section)

I guess I shouldn’t be surprised no one from the vaccines-cause-autism groups was blogging this. It’s pretty clear that NVAC doesn’t support the idea of a vaccine caused epidemic of autism–either through thimerosal or some other means. Not something the vaccines-cause-autism crowd wants to advertise.

As long as we are here, it is worth noting that there was a lot more discussed in that meeting aside from vaccines.

There was a presentation about the Autism Centers of Excellence (ACE). These centers were created as large investments to build a long term autism research infrastructure.

There was discussion of the National Database for Autism Research (NDAR). This database is collecting all sorts of information (genetic, behavioral, diagnostic, etc.) for researchers to share. There was discussion about the cost to enter data into the database (about $5k per research project) and whether this would be an impediment to collecting information. Should NIH make separate small grants to cover the cost of data entry into NDAR? There was discussion comparing NDAR to IAN and whether these two databases could be linked. There was a suggestion that perhaps parents could add data to NDAR, not just researchers. (I’m skeptical that can be done well.) There was a very critical comment that NDAR has been “almost ready” to go for many years.

One very interesting part of the IACC meeting was the discussion of how autism research funding is spent. This was the basis for a blog post I made showing how research on autistic adults is getting a very small fraction of the total.

Most (if not all) of the blogging on this IACC meeting has focused on the end: the was time for public comments. I wish I had known this was going to become a subject of contention; I would have made some notes. As it is, my recollection is that 4 people wanted to give public comments: Jim Moody (attorney and member of SafeMinds), Ari Ne’eman (president of ASAN), and two families with autistic children.

The meeting ended early, and the only person present to make his public comment was Mr. Moody. They called for the other people to comment, but, as I said, they weren’t present.

This is now being played up as excluding families by rushing through the agenda. I was surprised that they ended so early, but I didn’t get the impression they were rushing though it. I also note that it wasn’t just families who didn’t get to speak, Mr. Ne’eman didn’t get his opportunity either.

What I haven’t read is anyone giving an actual solution to the problem of what happens if they finish the agenda early.

Here’s my suggestion: perhaps Dr. Della Hann*as Executive Secretary of the IACC could see that cell phone numbers are taken from the commenters. When it looks like the meeting is ending, someone could send those scheduled to comment a text message via email.

Who knows, there is probably some government rule that bars doing that. But this strikes me as an accommodation issue. Autistics, especially kids, may not be able to sit through the hours of the meeting waiting for their 5 minutes to make public comment.

*There is a misunderstanding being propagated on the blogs lately. For anyone interested, her surname is Hann, not Hamm.

IACC seeking input on the Strategic Plan

29 Jul

If you are interested in how the U.S. government pays for autism research, you should be following the Interagency Autism Coordinating Committee (IACC).  They are, well, coordinating the research efforts of the various U.S. government funding agencies.

A big piece of this effort is their “Strategic Plan”.  That is a document that outlines what research should be done, and gives a budget for the research projects.

The first version of the Plan is out, but it has to be updated every year.  So, here’s your chance to be heard: do you want more money spent on issues concerning adults with autism?  Do you want vaccine/autism research to be incorporated into the Plan?  Let them know.

We discussed research funding for autism recently.  Only about 5% of the total research expenditures in autism are going to understand issues specific to adults.  This is under the category “What does the future hold?”  Yes, that question does speak to parents of children with autism.  For the majority of autistics, the future is now.

Pie chart showing how autism research funding is distributed.

Pie chart showing how autism research funding is distributed.

It is time to call for more research into issues concerning adults.  It’s just wrong to have so little of the funding going into this very important area.

Whatever feedback you may want to give, you can do this through a web based form.

Here is the email I received:

Request for Information (RFI): Updating the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder (ASD) Research

On behalf of the Interagency Autism Coordinating Committee (IACC), the Nation Institute of Mental Health is seeking comments to inform the annual update of the IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research, as required by the Combating Autism Act of 2006 (P.L. 109-416).

The purpose of this RFI is to solicit input from ASD stakeholders to inform the next update of the Strategic Plan. In the RFI form, there will be an opportunity to provide input on each section of the IACC Strategic Plan. Please include suggestions regarding missing or underrepresented knowledge areas, new opportunities needed for advancing research and knowledge about ASD, and suggestions for prioritizing research objectives.

The RFI will close on August 21, 2009.

Responses must be submitted electronically via the web-based form.

Background:

The IACC was established as a result of The Combating Autism Act.  The act requires that the IACC develop a strategic plan for autism research and update the strategic plan annually. The IACC is composed of both Federal and public members.  The first IACC Strategic Plan for ASD Research was developed through an extensive process engaging a wide range of Federal agencies and public stakeholders.  The Strategic Plan is organized around six questions that are important for people with ASD and their families:

I. When should I be concerned?

II. How can I understand what is happening?

III. What caused this to happen and can this be prevented?

IV. Which treatments and interventions will help?

V. Where can I turn for services?

VI. What does the future hold?

Please Note: The responses that you provide will become part of the public record.  You have the option of posting your responses anonymously or you may choose to have your name associated with your response. In your responses, please do not include personally identifiable information that you do not wish to make public.

For more information about the IACC, please visit www.iacc.hhs.gov.

Now follow the IACC on Twitter (www.twitter.com/IACC_Autism).

Contact Information:

Attention: RFI on Updating the Strategic Plan for ASD Research
Office of Autism Research Coordination
Office of the Director
National Institute of Mental Health
6001 Executive Boulevard, Room 8235, MSC 9669
Bethesda, MD 20892-9669
Email: iacc@mail.nih.gov

IACC services subcommittee meeting tomorrow

23 Jul

The services subcommittee doesn’t get the blogging attention as the full committee meeting. No chance for a discussion of “epidemics” or vaccines. It is well worth the time to listen in, for whatever time you can, to see how this process works. Even more, it is well worth being informed so that you can get involved.

I just got this via email:

A Town Hall Meeting of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee

A Town Hall meeting of the IACC Services Subcommittee will take place on Friday, July 24, 2009 from 10:45 a.m. to 2:00 p.m. CT at the 2009 Autism Society National Conference

Pheasant Run Resort and Spa
4051 East Main Street
St. Charles, IL 60174

The meeting will be open to the public, with attendance limited to space available in the main room and overflow room. The meeting  will begin with a 30 minute presentation by members of the IACC, followed by an open microphone session in which comments may be shared on topics related to services for people with ASD. Topics of particular interest include: Questions 5 and 6 of the IACC Strategic Plan for ASD Research: “Where can I turn for services?” and “What does the future hold?” Additional suggested topics: Services for adults, community issues, family support, school services, provider services, infrastructure, evidence-based services and supports, health and safety, early diagnosis, transition to adulthood, therapies and treatments, and health and dental care.

The latest information about the meeting, including online registration and remote access can be found at: http://iacc.hhs.gov/events/2009/services-subcommittee-town-hall-mtg-announcement-July24.shtml. The meeting flyer can also be found on the IACC events web page.

Remote participation: Written comments on ASD services issues are welcome in advance, during and after the meeting until July 31, 2009 at: iaccservices@mail.nih.gov. Written comments received before or during the meeting may be shared with the audience by the moderators as time permits.

For more information about the IACC, please visit www.iacc.hhs.gov.

The IACC also can now be found on Twitter (www.twitter.com/IACC_Autism).

The Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8200
Rockville, MD 20852
Phone: 301-443-6040
IACCServices@mail.nih.gov

Autism research funding: who is paying and how much?

21 Jul

Ever wonder who is funding autism research and where the money is being spent? If you were watching/listening to the IACC meeting this week, you would have answers to a lot of these questions.

To answer the most basic question, the current annual expenditure on autism research in the U.S. is $225,000,000.

Most of us assume (and we are right) that in the US, the Government is the biggest source of research funding. But as it turns out, fully 35% of the research funding for autism in the U.S. is from private sources. That works out to over $78M in autism research funding is from private sources. Pretty impressive.

Anyone want to venture a guess as to who is the largest private source? Autism Speaks would be a good guess. It was mine. A.S. is a respectable second with $31M, but the number one private source of autism funding is the Simons Foundation, with $43M per year.

In case you want to see the entire breakdown of funding sources, here it is:

Autism Funding by Agency

Autism Funding by Agency

So, now we know where the money is coming from. The next question is “where is it going?” There are pages of detailed information on that in the research portfolio discussed at the IACC, but let’s take the summary view. In specific, NIH collated the research by category. They used the categories from the Strategic Plan:

I. When Should I Be Concerned?
II. How Can I Understand What Is Happening?
III. What Caused This To Happen And Can This Be Prevented?
IV. Which Treatments And Interventions Will Help?
V. Where Can I Turn For Services?
VI. What Does The Future Hold?

All of these categories are important and each of us will have a different view on the priorities. The issues I want to see get more funding involve figuring out how best to support autistics. In order to do so, I feel the research community has to fill a big gap in their knowledge when it comes to adult autistics.

Or, to put it in Strategic Plan categories, I think category V (where can I turn for services) and, mostly, VI (What does the future hold) need more attention and funding. As autism research funding grows, we should be expanding funding in these areas.

How is funding divided now? Well, here’s a pie chart:

Pie chart showing how autism research funding is distributed.

Pie chart showing how autism research funding is distributed.

Obviously the funding agencies don’t agree with me on priorities. Category V gets 1% of the funding, and category VI gets 5%.

Let’s put this another way: there are by some estimates roughly 1.5M autistics in the U.S. (I know that’s debated, but let’s go with it for a rough estimate). We are spending about $9M on understanding adults with autism. Roughly, $6 per autistic. Does that make sense?

Or, to put it another way, we have 300M people in the U.S.. Each of us is spending, what, $0.005 (one-half cent) a year on studying adults with autism? Surely we can do better than that.

It is worth stopping for a moment to acknowledge that the Strategic Plan is just getting started. The funding levels shown in the pie chart are going to change as the Plan is implemented. But, will research on adults be given high priority?

There are a lot of blog posts and news stories lately talking about how we as a society are not prepared for the “tidal wave” of autistics about to become adults. If that is your position, why not call for better research on adults? Why not call for the sorts of papers that will help you and your soon-to-be-adult children advocate for better services?

A vaccinated vs unvaccinated study

6 Jun

For as long as I can recall, this has been one of the clarion calls of the autism/antivaccine/pro-disease groups – that the only way to know if vaccines cause autism is to do a ‘simple’ study of vaccinated vs unvaccinated populations. Indeed, Generation Rescue carried out an ill-fated phone survey that in reality meant absolutely nothing so badly was it put together and carried out. But even if it _had_ been well designed and carried out the results were not good for pro-disease anti-vaccine autism believers:

Number of boys and girls with Aspergers
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 2%

Conclusion: you are 1% more likely to have Aspergers if you have been partially vaccinated than unvaccinated. If you are fully vaccinated your chance of being Aspergers is no greater than if you were unvaccinated.

Number of boys and girls with PDDNOS
Unvaccinated: 2% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have PDDNOS if you are unvaccinated. If you are fully vaccinated your chance of being PDDNOS is 1% less than if you were unvaccinated.

Number of boys and girls with Autism
Unvaccinated: 2% of total
Partially vaccinated: 4% of total
Fully vaccinated: 2%
Fully and Partially combined: 2%

Conclusion: you are 2% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is no greater than if you were unvaccinated.

Number of boys and girls with all ASD’s
Unvaccinated: 4% of total
Partially vaccinated: 6% of total
Fully vaccinated: 3%
Fully and Partially combined: 3%

Conclusion: you are 2% more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is 1% less than if you were unvaccinated.

Overall conclusion: the best way to avoid being diagnosed with an ASD is to be fully vaccinated according to the CDC schedule.

And in September of last year, you may recall the announcement of yet another study that demonstrated there was no link between MMR and autism. During the press conference that launched that study David Kirby asked the lead author – Ian Lipkin – what his thoughts were about a vaccinated vs unvaccinated study. His answer was:

http://webjay.org/flash/dark_player

Very difficult if not impossible.

Given that, the US NVAC vaccine safety group released a draft of their latest thinking on the issue of vaccine safety which touched on the idea of doing this sort of study. The entire section related to this is quoted in full below:

Feasibility study of Vaccinated/Unvaccinated/Alternatively Vaccinated Children

Members of the public, stakeholders, and the Interagency Autism Coordinating Committee (IACC) have articulated interest in a study of vaccinated vs. unvaccinated children to determine if there are differences in health outcomes between groups with varying exposures to vaccines. The Working Group considered drafting a recommendation for an IOM review of the science, epidemiology and feasibility of studies of unvaccinated, vaccine delayed, and vaccinated children. The Writing Group Draft Document on Gaps in Research Agenda further developed this idea. The Working Group wishes to clarify several points on this topic. *First, the Working Group believes that the strongest study design, a randomized clinical trial that includes a study arm receiving no vaccine or vaccine not given in accord with the current recommended schedule, is not ethical, would not pass IRB review, and cannot be done*. The type of study that is being suggested would be an observational study of populations looking at natural variation in vaccination schedules including some children where vaccination is declined through parental intent. All children in the study should be recommended to receive the standard immunization schedule. The Working Group endorses the Writing Group’s recommendation for an external expert committee, such as the Institute of Medicine, with broad methodological, design, and ethical expertise to consider “strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs to examine outcomes in unvaccinated, vaccine delayed and vaccinated children and report back to the NVAC.”

The Working Group does not necessarily agree with all of the language in the Writing Group’s statement, but with its general intent. The process should be open and transparent, engaging individuals from a broad range of sectors. Considerations as outlined by the Writing Group and modified by the Working Group are as follows:

– This review should consider strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs and report back to the NVAC

– Consideration should be given to broad biomedical research including laboratory studies, and animal studies.

– Consideration should also be given to study designs comparing children vaccinated by the standard immunization schedule with unvaccinated children (by parental intention), and possibly partially vaccinated children or children vaccinated by alternative immunization schedules

– Outcomes to assess include biomarkers of immunity and metabolic dysfunction, and outcomes including but not limited to neurodevelopmental outcomes, allergies, asthma, immune-mediated diseases, and other developmental disabilities such as epilepsy, intellectual disability and learning disabilities.

– The inclusion of autism as an outcome is desired. This review should also consider what impact the inclusion of Autism Spectrum Disorders (ASD) as an outcome would have on study designs and feasibility, as referenced in the IACC letter to NVAC.

– This review should be conducted expeditiously, in a transparent manner, and involving broad public and stakeholder input.

So, as per a straight ‘vaccinated vs unvaccinated’ study, Ian Lipkin and NVAC Working Group agree that it can’t be done in the most scientifically accurate way and even if it could, it wouldn’t be ethical due to the requirement of excluding children from vaccination.

What they are saying is that a group like the IOM therefore should write up a feasibility study as to how such a study _could_ be done. Without this, its extremely unlikely that a vax vs unvax study will ever fly.

Amusingly, the way that the NVAC Working Group words a possible solution – vaccinated vs unvaccinated via parental choice – sounds pretty much like the Generation Rescue phone survey. And we know how that ended up.

Why Generation Rescue shouldn’t be on the IACC

27 May

I have been very critical of the lobbying efforts of Generation Rescue. I have found their actions to be far from helpful in the struggle to obtain quality research for people with autism. One issue I haven’t covered is the fact that Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, one “short term goal” listed on the Strategic Plan is:

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

We need a lot more research like that if we are to serve our existing adult population and prepare for the kids of today to transition into adulthood.

This sort of research, oddly enough, isn’t supported by many of the autism advocacy organizations. Instead, they see the IACC as a pathway to their singular goal: recognition of the supposed link between vaccines and autism.

The fact of the matter is simple–Generation Rescue should not hold a seat on the IACC. The reasons are simple, and are below:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally mind you, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

Ms. Redwood is ably assisted in steering all discussions towards vaccines in one of the working groups by Mark Blaxill. Again, I have never heard anyone from Generation Rescue say, “Dang, that Mark Blaxill just doesn’t get our point of view!”

So, if the Generation Rescue position is already represented, why give GR an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment—why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to representation on a government body, why should every faction of what is, really, one big vaccines-cause-autism group be given a seat at the table?

Yes, this is much like item (1)—all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Please, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise. We don’t need to hear twice as much (or more) vaccine-oriented discussions.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue. Moreover, I really don’t see how Generation Rescue can lead the way in directing autism research given their demonstrated lack of understanding of the principles of research.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again—they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

And, once again, why should all the different heads of the same beast (TACA/Generation Rescue/SafeMinds/NAA) be treated as separate entities?

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though

The problem with the IACC is…

27 Apr

…that Tom Insel is too nice.

OK, that is as oversimplification, but bear with me. Dr. Insel is the director of the NIMH (National Institutes of Mental Health) and the chair of the IACC (Interagency Autism Coordinating Committee). As chair, he gets to run the meetings. Lucky him!

I say that with tongue planted firmly in cheek. Dr. Insel has a tough job trying to manage the IACC.

Let’s back up a little bit. The IACC committee meets regularly to work on producing a plan for the government’s research effort in autism. The idea is simple–gather together a lot of people who can bring their expertise to the table and work together to build a good plan.

Unfortunately, Lyn Redwood apparently didn’t get that memo. Ms. Redwood represents her organization (Safe Minds) as well as the views of a number of other autism organizations who promote the idea that vaccines caused an epidemic of autism.

Lyn Redwood spends each meeting as though it is held for everyone to listen to her talk about vaccines. I know that sounds like an exaggeration–it isn’t. Here is a quote from another member of the IACC committee from a recent meeting, speaking about an effort by Lyn Redwood to insert a large amount of new language into the Strategic Plan.

I’m just a little perplexed as to why we are actually looking at this. Because we worked so hard over many months as a committee and..you know..and as one person in the field who is constantly seeing more and more children with autism this sense of urgency seems to sabotaged by this constant barrage of another opportunity for one person of this committee to constantly try to rewrite the Plan. It doesn’t seem to be the correct process.

Dr. Insel then commented “There are heads shaking here.” “Heads Shaking” is what Dr. Insel says when people are nodding in agreement during a meeting. In other words–a large portion of the IACC agreed with the idea that Lyn Redwood was hijacking the process again!

The problem is, to say it again, Tom Insel is too nice. He gives Lyn Redwood a LOT of leeway to talk about…well, whatever she wants to talk about. Unfortunately, she spends a lot of time talking vaccines. Lots of time. The IACC doesn’t have lot’s of time to spend on any one subject. Especially a subject like vaccines that the rest of the committee clearly isn’t interested in discussing. To make matters worse, many of the discussions are nearly meaningless. “Should we phrase this noncommittal statement this way or that way?”

Another person draining a lot of valuable time from the IACC is Mark Blaxill. Mr. Blaxill is not on the main IACC committee. He is in one of the working groups (think advisory group to the main committee). While, luckily, he doesn’t get to vote in the main committee, in his own way he is worse than Ms. Redwood. He makes long speeches, filled with insults to the other committee members, calling those who don’t agree with him “Epidemic Denialists”.

It strikes this listener that Ms. Redwood and Mr. Blaxill are trying desperately to engage the other IACC people in a debate on the autism vaccine question. Ms. Redwood has offered to bring in papers supporting her position. Thankfully, Dr. Insel avoided that mess. I can easily imagine many of the researchers on the IACC thinking, “Gad! I already wasted part of my life on that junk science when I read it the first time. Can’t we just get something accomplished for people with autism here?” I mean, seriously, does Ms. Redwood think that people haven’t read the papers she leans on? The implications sounds like, “You don’t agree with me. That means you haven’t read these studies.” What she doesn’t understand is that pretty much everyone has read the studies she uses as support for the “mercury and vaccines caused an autism epimic” idea. Everyone has read them, and most who have read them find them to be really bad science. The academics could use them as examples of bad science for their students. Those studies are that bad.

Here’s some much needed background. The IACC committee is made up of a number of professionals and stakeholders. People fly in from all over the US to attend meetings–most of which are only a day long. The agendas are packed; there isn’t much time to waste.

Rather than accept that IACC meeting time is limited and precious, with many topics to cover, both Ms. Redwood and Mr. Blaxill act as though they are in one of Senator Dan Burton’s hearings, where the goal was to get as much of the idea that vaccines cause autism into the public record as possible–whether the science was good or not.

So, what’s happening while Ms. Redwood or Mr. Blaxill are talking? This is where the “Tom Insel is too nice” bit comes into play. Dr. Insel, chair of the IACC, allows them all the time they want to take (and they want a lot of time) to talk about vaccines. I don’t know how much of it is Dr. Insel being polite or how much is an effort to stave off future complaints that the vaccine lobby was excluded from the process. There are likely multiple reasons. Net result–lots of time taken up talking about vaccines.

Well, that’s not really accurate. There is a lot of time lecturing about the supposed vaccine/autism link. You see, there is almost no discussion amongst the commitee. Just the one-sided presentations by Lyn Redwood and Mark Blaxill. The rest of the IACC members often (almost always) remain silent. My guess is that they are just too smart to get dragged into the discussions. Yes, too smart. What purpose would it serve?

From what I can see, the rest of the IACC “gets it”. They “get it” in the fact that they already understand the vaccine debate. I don’t see the point in taking up committee and working group time with Lyn Redwood or Mark Blaxill pretending to be trying to educate the other members. The rest of the IACC also “gets it” in the fact that they understand to avoid getting sucked into the debate. Mark Blaxill would likely enjoy some blog fodder. The likes of David Kirby and Robert Kennedy Jr. would love to take everything out of context and misinterpret it for their own blog readers. All this would come at the cost of people with autism.

Dr. Insel could, I guess, limit the time that Ms. Redwood and Mr. Blaxill use. To be honest, he does manage their time somewhat, but much more would help keep the meetings productive. Dr. Insel is in a hard spot–even a reasonable level of limiting the discussion would obviously be used to fuel complaints that the vaccine debate is being quashed or the process is corrupt.

So, in the end, Dr. Insel plays the nice guy. What else can he do? Lyn Redwood and Mark Blaxill take advantage of it and, in the end, it is people with autism who pay the price when the IACC meetings are hijacked and the sense of urgency is lost as one person tries to rewrite the strategic plan.

Thrown under the bus…but for a good cause, right?

21 Apr

America is a wonderful place. Where else can someone publish absolute garbage, refuse to retract it, accuse the government of being involved in a massive conspiracy–and still end up on a government committee?

I am speaking of Lyn Redwood. She is one of the coauthors on ‘Autism: a novel form of mercury poisoning’. This was ‘published’ in Medical Hypotheses. I put ‘published’ in quotes because Medical Hypotheses is a pay-to-publish pseudo-journal that has no review (peer or otherwise) at all. OK, the editor does check that the authors are talking about something medical, and makes sure that some sort of narrative is put together. But, scientifically? No review. Too many people, especially those parents with new autism diagnoses for their children, are unaware that “Medical Hypotheses” ‘papers’ have no place next to actual research papers.

If that piece of junk science wasn’t enough, Ms. Redwood was also a co-author on another less-than-worthless Medical Hypotheses ‘paper’, Thimerosal and autism? A plausible hypothesis that should not be dismissed. The first author on that “paper” was Mark Blaxill. Truly, one of the scary moments in the Omnibus proceeding came when the research head of ARI (Autism Research Institute) referred to Mark Blaxill as “brilliant”. No exaggeration–that was a frightening thought to this listener. Mr. Blaxill is probably rather bright and likely good at whatever he does professionally. But the idea that the information is traveling from him to the research head of the Autism Research Institute rather than the other way around is just scary.

The time to pay-to-publish retractions of these papers was years ago. Yet, both papers are still out there, and new parents usually won’t find out for a long time that those papers a junk.

Besides promoting bad science, what do Ms. Redwood and Mr. Blaxill have in common? Well, the Interagency Autism Coordinating Committee, for one thing.

Ms. Redwood sits on the Interagency Autism Coordinating Committee. This group helps coordinate the US Government’s research efforts on autism. Rather that fight for better understanding and services for, say, adults, the poor, or minorities with autism, Ms. Redwood filled meeting after meeting (after meeting) with struggles to get the wording of the Strategic Plan as close as possible to a government admission that vaccines cause autism.

Mark Blaxill sits on one of the working groups for the IACC, probably placed there by Ms. Redwood. Mr. Blaxill, also a co-author on a number of papers that any reasonable person would have retracted by now, has wasted considerable meeting time with long, insulting ramblings. I know there are people who appreciated Mr. Blaxill’s speeches, but I consider likening the other people on the committee to holocaust denialists insulting. Maybe I misinterpreted his repeated use of the phrase “Epidemic Denialists”. If so, I bet I’m not the only one. Somehow, I don’t think I’m wrong. It appears to be an insulting and deliberate choice of phrases.

Unfortunately for the undercounted communities like adults with autism, the poor with autism, minorities with autism–a number of our own–they present an “inconvenient truth” to people like Mark Blaxill and Lyn Redwood. They demonstrate that the numbers groups like SafeMinds use to promote the faux autism epidemic are terribly flawed. If we are still under counting people with autism in the U.S., how can we use the counts from the California Regional Centers or from education data so far as “evidence” of an “epidemic”?

I know I wrote about this issue recently. But, reading the expert report by Dr. Rodier, and writing about it, I realized anew that a few individuals have caused this harm. And, those few individuals could (and should) work hard to correct that harm.

So, in place of calling on the IACC to fund research that could help the under counted, Ms. Redwood and Mr. Blaxill got this paragraph:

Research on environmental risk factors is also underway. An Institute of Medicine workshop held in 2007 summarized what is known and what is needed in this field (Institute of Medicine of the National Academies, 2007). Numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury based preservative, thimerosal (Immunization Safety Review Committee, 2004). These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the research literature. Some do not agree and remain concerned that ASD is linked or caused by vaccination through exposure to Measles Mumps Rubella (MMR), imposing challenges to a weakened immune system, or possibly due to mitochondrial disorder. Public comment to the Committee reflected opposing views on vaccines as a potential environmental cause. Those who are convinced by current data that vaccines do not play a causal role in autism argue against using a large proportion of limited autism research funding toward vaccine studies when many other scientific avenues remain to be explored. At the same time, those who believe that prior studies of the possible role of vaccines in ASD have been insufficient argue that investigation of a possible vaccine/ASD link should be a high priority for research (e.g., a large-scale study comparing vaccinated and unvaccinated groups). A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

Let’s just pull that last sentence out for emphasis, shall we?

A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

It’s odd to me–I would have fought that language if I were Lyn Redwood. I would have pointed out that I have a broader perspective than just vaccines, and that I also care about development of effective treatments, services and supports. Isn’t it just a little sad that the people who are pushing the vaccine connection don’t have the view that effective treatments, services and supports for those with ASD’s are a top priority?

But, it wasn’t their top priority. It still isn’t. In the end, Lyn Redwood and Mark Blaxill, people who are on the IACC to represent the interests of the entire stakeholder community, threw the underrepresented autistic communities under the bus.

The vaccine debate has a real cost

31 Mar

Of course, this isn’t news. But usually the cost is characterized in the danger to public health.

What about the cost to people with autism? Here’s a blog post from the Simons Foundation. (as an aside–there is a real autism organization). They are quoting Cathy Lord and Paul Shattuck.

Given the diversity of the panel’s members, the strategic plan was, unsurprisingly enough, hotly debated, and continues to be scrutinized.

Most of the debate centers around the plan’s emphasis on environmental risk factors. Lord says this came at the cost of research on more worthwhile topics, such as how to expand treatment services to low-income families — a project for which she was hoping to be funded.

“It’s gone, just gone. I was pretty astonished to see that that had disappeared,” she says.

The report also doesn’t emphasize studying autism’s course beyond childhood, notes Shattuck. “The amount of money that goes into understanding services and aging and supporting people in their daily lives seems disproportionately small,” he says.

One of the problems with the vaccines-cause-autism groups is that they really don’t advocate for people with autism. They have abandoned entirely people of low income and minorities (except where they can be used for political gain).

It isn’t just that groups like SafeMinds, Generation Rescue and the rest can’t be bothered to spend the time worrying about minorities or adults. It’s the fact that the data those groups use to support the “epidemic” makes ZERO sense when you consider minorities.

Consider this: the “rate” of autism is 0.3 per 1,000 for Hispanics in Wisconsin, but 10.6 for Whites in New Jersey.

Why isn’t Generation Rescue calling for an investigating the Hispanics of Wisconsin? Shouldn’t they want to know what is “protecting” that subgroup from autism?

They don’t care, they don’t want to bring attention to the Hispanics in Wisconsin (or the under represented minorities across the nation), because it blows a big hole in the “epidemic”. Obviously we still aren’t counting all the people with autism in our prevalence estimates. How can we rely on the historical data that shows an “epidemic” if we aren’t doing a good job even now?

We’ve covered this many times in the past. It is one thing when the damage caused is more abstract. But when it become very real, when minorities are being left out in the cold, it is an outrage.

Hours and hours were spent in the IACC meetings wordsmithing the vaccine language. To groups like SafeMinds and people like Lyn Redwood, the Strategic Plan was a political document. It was a statement by the government, and it was critical to get as much “admission” of autism being caused by vaccines as was possible. So what if another generation of minorities gets mislabeled with Intellectual Disability or some other Special Education category when SafeMinds was able to get the IACC to admit that many parents think vaccines cause autism?

This is what happens when psuedo “Vaccine-injury” advocates pretend to be Autism advocates and take seats at the table. Lyn Redwood put her own interests and those of her organizations ahead of the well being of people with autism.

That’s just plain wrong.

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