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Are autism organizations acting in good faith?

19 Jan

As one might imagine, this is a follow up post to Kev’s post, Did the IACC act in bad faith?

Obviously, much damage control is ongoing right now. Some autism organizations were hoping for a document from the U.S. Federal Government indicating that vaccines might be implicated as a causal factor in autism. No surprises there. They managed to get some language and a possible research project into an early approval stage for inclusion in the IACC’s Strategic Plan.

Now, these same autism organizations are crying foul that the vaccine language was removed. Autism Speaks has pulled support for the Plan under the cover story that they are upset at the process–that a “previously voted-on decision” was revisited without “forewarning”.

Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December—would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

Bob Wright, founder of Autism Speaks, stated “Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

So, this wasn’t on the agenda, so it is a “surprise tactic” and this is why the process is “tainted”. Somehow, this just didn’t ring true to me when I read it.

Anyone else check the actual agenda? In case you don’t want to click on the link, here it is:

Time Event
8:00 Registration
9:00 Call to Order and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
9:05 Brief Introductions of IACC Members
9:10 Review and Decisions: IACC Strategic Plan for ASD Research: Introduction
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
10:40 Break
10:45 Continuation – Review and Desicisons: IACC Strategic Plan: Budget Recommendations
12:15 Lunch
12:45 Continuation – Review and Decisions: IACC Strategic Plan: Budget Recommendations
1:15 Review and Decisions: IACC Strategic Plan: Finalizing the Plan
2:00 Break
2:10 Open Session for Public Comment
2:30 Closing Comments and Adjournment

What are the main parts of the agenda? “Review and Desicisons: IACC Strategic Plan: Budget Recommendations” and “Review and Decisions: IACC Strategic Plan: Finalizing the Plan”

Pretty broad agenda item there. Definitely broad enough to cover revisiting the vaccine proposals. Not a “surprise tactic”, not something outside the agenda. Just an action that probably saved the Strategic Plan from being voted down.

TACA is stating that the IACC “rescinds vaccine research initiatives”. Makes it sound like there was a hard commitment to the research initiatives. There wasn’t: the Strategic Plan wasn’t finalized. They also play the “it wasn’t on the agenda” card, like Mr. Wright.

SafeMinds is stating that the action by the IACC defies “wishes of its own scientists”. No kidding, they say that. They say that it also defies the wishes of “Congress”. As Kev has already pointed out, where does the Combating Autism Act state that vaccines should be researched? (hint, it doesn’t). I guess a couple of people speaking in a Colloquy are all of Congress? Because, that’s the only place where this vaccine language is included related to the CAA–the Colloquy–a couple of short speeches given after the Act was voted upon. There were also arguments made before the CAA was voted on about vaccines, including a lot of lobbying by these same autism organizations that are now crying “foul!”

That tells this reader one very important fact: Congress specifically did not include vaccine language in the Combating Autism Act. Seriously, we likely wouldn’t have a CAA if the vaccine language was included. They wouldn’t have had the votes to get it passed. But, hey, that doesn’t make a good press release, does it?

SafeMinds has gone so far as to pull its support for the Strategic Plan. If SafeMinds’ very own Lyn Redwood would like to follow the example set by Alison Tepper Singer and resign (in this case, from the IACC), I’ve got a few really good suggestions for who could fill the seat.

But pull it all together: Autism Speaks, TACA, NAA…all these press releases are damage control. OK, that and they are jockeying for position to complain to the new U.S. administration about how they have been “marginalized”. But, are they being truthful? Are they, as supposed representatives of the “Autism Community”, using their position wisely?

Let’s face facts: the Strategic Plan was going to be voted down. The majority of the members didn’t want the vaccine language included. The options were simple: revisit the sections on vaccines now and get the Plan passed or have the Plan go down in flames now and rewrite the sections on vaccines later.

Either way, the vaccine language was going to be out.

Doesn’t make a good press release, though, does it? “We were going to lose anyway, but we want to pretend like they acted improperly”. Somehow I don’t see Generation Rescue, TACA, SafeMinds, or the NAA issuing such a simple, truthful statement.

Did the IACC act in bad faith?

17 Jan

A slew of Press Releases from Safe Minds and the NAA appeared today decrying the IACC’s re-vote on two pieces of autism/vaccine research. SafeMinds say:

In a highly unusual departure from procedure, government representatives to the Federal Interagency Autism Advisory Committee (IACC) voted this week against conducting studies on vaccine-autism research despite approval of the same studies at their prior meeting. The research was supported by numerous autism organizations and requested by IACC’s scientific work groups and Congress

NAA said:

In an unprecedented move on Wednesday, the Interagency Autism Coordinating Committee (IACC) removed previously approved vaccine safety research from the Strategic Plan for Autism Research objectives…. The committee’s action is in direct opposition to the majority of its public members who support vaccine research, and to the Congressional directive of the Combating Autism Act of 2006 (CAA) which specifically called for research into “potential links between vaccines, vaccine components, and autism spectrum disorder.”

So, there’s a number of issues that need addressing. Lets take them in the easiest to address first.

1) The allegation that the re-vote is ‘highly unusual’ or a ‘departure from procedure’ or ‘unprecedented’.

Well, it may well be unprecedented. Thats because this is only the second time that vote was taken on this issue. The first time they voted one way, this time they voted another. If this was the 300th vote then NAA might have a point. As it is, they don’t. They’re using these as Scare Words to make the situation sound alarming.

I’ve talked to a number of people who attended the IACC meetings both in person and via the phone. The claim that the re-vote was a ‘highly unusual departure from procedure’ is rubbish. Why? *Because there is no procedure* . One person I spoke with said:

[There is]…no requirements other than to vote on approving or not approving the plan. There is not even a requirement to vote on individual initiatives!

Another person said:

[T]here are some rules–e.g they can’t hold a meeting later than the agenda says. In December, Lyn [Redwood] was calling for people to work into the night, but Insel canned it saying the rules are very clear on that.

But in the matters of voting, re-voting etc everyone was in total agreement. There is no procedure. This puts an instant black mark against the NAA and Safe Minds c;aims and reveals it as an attempt to hype up the situation by using Scare Words.

2) The claim that the CAA specifies vaccine specific language

The NAA say in their press release that:

The committee’s action is in direct opposition to…the Congressional directive of the Combating Autism Act of 2006 (CAA) which specifically called for research into “potential links between vaccines, vaccine components, and autism spectrum disorder.”

This is quite simply not true. Nowhere in the CAA is that sentence used. In fact, nowhere in the CAA do the words ‘vaccine’, ‘vaccination’, ‘immunize’, ‘immunization’, ‘inoculate’, inoculation’, ‘thimerosal’, ‘mmr’ etc appear. Don’t take my word for it. Download the Act and search for yourself. I guess somehow, the NAA made a terribly unfortunate accident and confused the CAA itself with this Senate discussion _about_ the act. A discussion which has no bearing whatsoever on the legal _contents of the Act itself_ .

3) The insinuation that because _they_ voted for vaccine specific research, that they speak for the majority of the autism community

The NAA’s press release quotes a Ms. McIlwain as saying:

It’s no wonder parents around the country are questioning vaccines when government agencies refuse to investigate legitimate vaccine safety concerns

Safe Minds Lyn Redwood said:

“Advocacy groups and legislators have been marginalized in this process.”

As we’ve seen, legislators have not been marginalised. Certain advocacy groups may well have been. Boo-hoo. Its about time we asked ourselves the question: do these co-called advocacy groups actually accurately represent individual opinion?

In the Summer of 2008, the NIMH asked for public comments about the IACC’s Strategic Plan. This was following the NIMH’s Director Tom Insel statement to Lyn Redwood of SafeMinds during the Nov 21st 2008 IACC meeting:

We’ve received public comments on both sides and comments that make it clear that vaccines have no place in this report.

If one visits the public comments page (see link above) and does a search for the word ‘vaccine’, this is what you get:

Out of 148 total responses, 52 (35%) specifically mention vaccines, asking for research. 18 (12%) specifically mention vaccines, asking for the IACC in various ways to discount the vaccine idea. This leaves 78 (53%) who are so uninterested in the vaccine idea they don’t even mention it.

Or, to put it another way, 65% of responders did not ask for vaccine research.

I think this is pretty clear. When 65% of people who are interested enough in autism to respond to a request for public comments don’t ask for vaccine research then the 35% who do cannot claim to be in the majority, or to hold the leading opinion on the matter.

So lets recap. The re-vote was not unprecedented. It did not go against procedure. The CAA does not mention vaccines anywhere in the entirety of the bill. The majority of people who are interested in autism aren’t interested in vaccine research.

I object! (Part 3)

20 Nov

If you’ve been reading these past few days, you know that I find a recent letter sent to the IACC by a number of autism organizations to be, well, objectionable (hence the post titles!). I’ve noted that I don’t like the way they claim backing from a united “autism community”. I don’t like the way they are presenting their arguments in their letter (here and here).

And now, for the last part of their letter.

Bullet point (d), or, we want a bigger say

Provisions for accountability and evaluation for the research spending are absent. Adoption of oversight, review and evaluation mechanisms, such as an Autism Advisory Board and a Department of Defense grant review model, should be added to the plan.

They are asking for an “advisory board” or AAB and a grant review system. Generation Rescue attempted (and apparantly failed) to get an AAB put in place by lobbying he Secretary of Health and Human Services. Now they are pushing the IACC to institute an AAB and also add DoD grant review model.

Let’s look at these proposals one at a time, starting with the AAB.

This is not the time to institute the Autism Advisory Board. President-elect Obama will soon be in office. He has specific ideas on autism and disabilities in general. These include an “autism czar” to coordinate autism activities. Let Mr. Obama and his team make the next changes in the structure of how autism research activities are conducted.

Second, the IACC is already an advisory board. Why are people asking for a second layer, when the IACC process has been working well? OK, you got me, it’s a good bet that these people don’t think the process has been working well. If I were to venture a guess, they are unhappy about the lack of a prominent statement about the “epidemic” and/or “vaccines” within the Plan.

Would an Advisory Board change that? Let’s look at how the Advisory Board is mentioned in the report that accompanied the CAA (note that the “autism advisory board is not mentioned within the CAA language itself):

[congressional report] The committee further re-examined the Interagency Autism Coordinating Committee (IACC). In particular, the committee wanted to increase the amount of public participation (from two individuals) to at least six. In addition, the IACC has been tasked to make recommendations to the Secretary regarding the public participation in decisions relating to autism spectrum disorder. For instance, the committee notes that the IACC may recommend providing other, additional, formal mechanisms, such as an Autism Advisory Board, to provide additional public feedback and interaction. Further, the Secretary may opt to provide such a mechanism without the recommendation of the IACC.

The committee expects that the IACC will be the primary mechanism for the coordination of all research, surveillance, and early detection activities within the Department of Health and Human Services. As agencies implement specific activities related to autism spectrum disorder, they should strongly consider those activities outlined in the Autism Research Matrix.

So, even if an Advisory Board were formed, it would still be the IACC that has the task of coordinating autism activities within HHS.

That would seem to me to be a potential reason why they are now asking for something akin to the DoD grant review process–to add some actual power–oversight and control–to the new “advisory” groups they are proposing.

Again, perhaps someone can correct me here in what I am about to say. But from my perspective I can’t see why the NIH needs a second layer of grant review. For the DoD, an agency that is not primarily involved in medical research, I can see a review board. For the NIH, an agency whose functions already include a peer-review grant process, I don’t see that the case is very clear at all for an additional review board. Let the NIH do what it is chartered to do.

Let’s look at that last bullet point from the letter:

[Letter]The planning process diminished the voices of important segments in the autism community. Future activities related to the SP should ensure integral participation of the diverse community representing families and individuals with autism.

First, I’d switch the wording in that last sentence to “….representing individuals with autism and their families.” (and I wouldn’t object at all to people who would change it to “…representing autistics and their families”)

Second, the very segments of the autism community who are signing this letter were given ample opportunities to be heard. IACC meetings have been dominated by a very few with a vary narrow message. An entire “Town Hall” meeting was held on the West Coast to obtain more input. Letters have been sent, investigations mounted and pressure applied. It is quite a stretch to state that voices were “diminished”.

Having your voice “heard” and having your requests acted upon are very different things, however. And that is the flaw in the logic of this letter: the voices were heard, but it appears that they carried a message that didn’t meet the basic criteria for inclusion in the Strategic Plan: a basis in sound science.

To take a recent example: People can say over and over, “we want research into chelation”. But, if (a) there is no reason to suspect chelation would help as autism is not heavy metal poisoning, (b) there is a possibility that chelation could hurt as demonstrated by recent rodent studies

Conclusion, or, tell them again

[letter]We ask that the IACC approve these specific action items: (a) adoption of amendments to the plan responsive to the above 5 concerns; (b) specification that research spending be at least the CAA minimum and establishment of a workgroup to be convened in January 2009 to develop recommendations to the IACC for increasing the research spending to at least that minimum and adding objectives which will bolster research on the environment, gene-environment and treatment; (c) inclusion of oversight provisions including an AAB and DOD-model review process; and (d) specification that oversight bodies and workgroups have strong and diverse community representation.

Which pretty much summarizes the bullet points above. My eye was drawn to the idea that a workgroup be convened in January 2009. Why? Could it be that they would like this workgroup to be a fait accompli when President Obama takes office? Again, let Mr. Obama put his plans into action.

The final short paragraph caught my eye as well:

[letter]Each day, decisions are being made on autism research by NIH and other federal agencies which are outside of the SP. It is imperative that the plan be improved in the areas noted above at the November 21, 2008 IACC meeting.

The strategic plan (SP) is not approved yet. By definition, decisions are being made that are outside of the Plan. Also, I sincerely hope that decisions continue to be made outside of the Plan. Who can predict what may happen in the next few years that may require action outside of the Plan? As the old saying goes, if we knew what the answers were going to be, it wouldn’t be “research”. I really have a hard time figuring out why they included that sentence in this paragraph.

The letter is then signed:

Autism New Jersey (formerly COSAC)
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

Much speculation could be had about what tradeoffs were made in order to get all these groups to sign the above letter. It isn’t much of a stretch to say that the letter doesn’t go nearly as far as many of the signatories would have gone on their own in the area of mercury and vaccines.

It is notable that Autism Speaks signed on to a letter with a number of groups that have been quite negative towards AS (to put it mildly). It is also notable that at least one, and this one major, autism research organization is not represented on this list.

I realize it is just one rather short letter, and my responses have been rather long in comparison. I also realize that many of these points are probably obvious to those at NIH and/or working on the IACC. And, yet, I somehow had to do this!

On to more important topics soon!

I Object! (Part 2)

19 Nov

It’s amazing that a relatively short letter could be so objectionable as to take multiple blog posts to discuss.

And, yet, here I am, on my third post. You can read the other two, I Object (Part 1) and Why should the Strategic Plan include vaccines.

Continuing on with bullet points (b) and (c)…

Bullet point (b), or “you are leaving money on the table”

[Letter](b) The plan fails to allocate commensurate resources. The CAA authorized $645 million for NIH research over five years. The plan falls short by close to $200 million. Given the urgent situation, we consider the CAA allocation to be a minimum requirement for federal agencies and feel that even greater resources are needed.

Who is going to say no to “we should apply more resources to the situation”? Certainly not I. But I’m not an MBA. I count resources in terms of how many good research groups are doing quality research in relevant areas. Counting the money, that comes second.

This is similar to the method used by the IACC. People tend to think–and this letter helps perpetuate–the idea that the CAA appropriated money and that the IACC worked from that budget to create the Plan.

Both ideas are incorrect.

First, in admittedly confusing language, the CAA authorized the appropriations. The CAA states, “…there is authorized to be appropriated..”, not, “this amount is appropriated”. Another way to look at it is to see how often “subject to the availability of appropriations” is used in the text of the CAA. It isn’t as though there is a bank account with $645M waiting to be tapped into.

Second, the IACC did not work from a budget and then decide on a Plan. They didn’t say, “Well, we’ve got $645 million, how will we spend it?” What they did was say, “what needs to get done?”. Near the end of the process, they passed the Plan on to the implementation subcommittee to draft the budgets for the various projects.

This sounds like the much more defensible method. The IACC can go to congress and say, “this is what we need to get the job done.” Had they come up with a budget higher than the CAA allocated, they would have been in a good position to ask for more. They are (I hope) in a good position to get their budget fully funded–they can defend why they came to the total cost in their budget.

That said, of course I’d like to see more research funded. But, I’d like to stay on a friendly partnership with the NIH too. Presenting their actions inaccurately (as this letter appears to do) doesn’t accomplish that in my mind.

let’s look at what the CAA authorized to be “appropriated“:

[Combating Autism Act]`SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.
(a) Developmental Disabilities Surveillance and Research Program- To carry out section 399AA, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $15,000,000.
`(2) For fiscal year 2008, $16,500,000.
`(3) For fiscal year 2009, $18,000,000.
`(4) For fiscal year 2010, $19,500,000.
`(5) For fiscal year 2011, $21,000,000.

`(b) Autism Education, Early Detection, and Intervention- To carry out section 399BB, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $32,000,000.
`(2) For fiscal year 2008, $37,000,000.
`(3) For fiscal year 2009, $42,000,000.
`(4) For fiscal year 2010, $47,000,000.
`(5) For fiscal year 2011, $52,000,000.

`(c) Interagency Autism Coordinating Committee; Certain Other Programs- To carry out section 399CC, 409C, and section 404H, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $100,000,000.
`(2) For fiscal year 2008, $114,500,000.
`(3) For fiscal year 2009, $129,000,000.
`(4) For fiscal year 2010, $143,500,000.
`(5) For fiscal year 2011, $158,000,000.’.

So, the $645 million number comes from section c. Two things to notice. First, there are large sums in sections (a) and (b) as well. I hope they are getting appropriated. Second, notice that there is money budgeted for 2007 and 2008 in that number. Remember that the CAA hasn’t been funded yet? Has NIH been sitting on their hands, waiting for the budget before they do autism research? Hardly.

The NIH budget for autism in 2007 is estimated at $127 million ($27M more than the CAA called for all IACC sponsored research, which includes CDC and other agencies). Similarly, $128M is the estimated budget for 2008 ($14M above the IACC budget).

Perhaps I am missing something. It is quite possible. But it appears to me that the NIH is working in good faith here.

Again, given the urgent need–to identify and serve the underserved in this country–I would consider there to be a great reason to increase resources applied by the IACC. I just don’t think that is want the signators of that letter had in mind. Consider the next point they make:

Bullet point c, More environmental research, or, what happened to the “V” word?

[Letter]Research on the environment, gene-environment interaction, and treatment are underrepresented in the draft plan. The plan should apply additional resources to these areas.

As already discussed, I found this statement interesting for what it doesn’t say, far more than what it says. What it doesn’t say explicitly is “mercury” or “vaccines”. As noted in that previous blog post: if the signatories of that letter are OK with this wording, it should be OK in the Strategic Plan.

Sullivan’s take

The order of these two bullet points sends a clear message: The Plan doesn’t use all the money “appropriated” and, yet, the Plan should put additional resources into environment and treatment.

Or, “why don’t you take some of the $200 million and spend it on these areas?”

It would be a good question if that was the way the process worked. (A) the money wasn’t appropriated (so there isn’t $200M sitting unused) and (b) the Plan was built on a “what needs to be done” basis, not “how much do we have to spend” basis. The push for more environment/treatment really needs to be justified in terms of “what needs to be done”.

But, again, I’d agree that more resources would be welcome. And, again, I would suggest attempting to meet the great need of serving the underserved. Research into services like the Taft Transition to Independent Living program comes to mind.

more to follow…

I object! (Part 1)

18 Nov

If you’ve been reading LeftBrainRightBrain lately, you know about “The Letter“. If you haven’t, here’s a quick introduction: A number of autism organizations drafted a letter and submitted it to the members of the Interagency Autism Coordinating Committee (IACC). The letter attempted to invoke “the autism community” (see the AoA blog post for more on that) and that was objectionable to me. Kev took up the idea of Who makes up the autism community. It is clearly an important discussion–there are over 100 comments for those two blog posts.

I’ve been told that the letter marks an achievement in advocacy–bringing together all these groups. And it was–someone got Generation Rescue to accept a document that didn’t explicitly call for research on vaccines. Whatever underling who told the top people there, “this is the best you are going to get” was pretty brave.

But, Let’s get back to the letter itself. Because, believe me, I for one have many more objections to that letter. Going through point-by-point takes some, but I present below my views. I’d suggest this: take a look at the letter, see what you may agree with or disagree with, and check back here to see if you agree or disagree with my take.

I’ll be frank. Every section had something objectionable in it.

Let’s take a closer look at the letter, shall we? I’ll add my thoughts section by section, starting in this post with the introduction and the first bullet point.

Introduction, or, “we are united”

[Letter]November 12, 2008

RE: Concerns on Draft IACC Strategic Plan

Dear Members of the IACC:

The Combating Autism Act required the IACC to prepare a strategic plan for autism research in order to enhance the quality, effectiveness, and overall benefits of autism research spending within HHS agencies. While the 2008 planning activities reflect improvements relative to earlier Autism Matrix efforts, ultimately the draft plan and the planning process have fallen short. Autism advocates have identified a range of deficiencies and each may place priorities on different concerns. Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here.

Ouch–there it is: “Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here”. For any confused as to what “community” means can read the title of the Age of Autism blog post, “Autism Community “United in Expressing Our Disapproval” of the NIH Strategic Plan for Autism Research.”

That’s been discussed a lot (feel free to join in) here and here.

But, let’s look at the substance of the Letter. They make a number of bullet points, (a) through (e).

Bullet Point (a), or “no Urgency”

[Letter](a) The plan fails to communicate a sense of urgency reflecting the alarming increase in prevalence and autism as a national health emergency. The beginning pages of the plan should embody urgency and the critical need of the government to apply the resources to address a crisis situation.

Variations on the word “urgent” are used at least 5 times in the Draft Strategic Plan.

What do they want? They want the Plan to specifically state that autism causes “considerable human and financial toll”, as support for the greater need for “prevention and treatment”. Those are speculations, those are statements from SafeMinds in complaining about the “Strategic Plan” in a previous letter.

Sullivan’s take on “urgency”
When I think of “urgent” in regards to autism, claiming an epidemic is not high (or anywhere) on the list. Finding better ways to help people with autism, yes, that would be high. In terms of the “alarming increase in the prevalence of autism”, I also see things differently that the authors of this letter. I see great strides in identification more people with autism. But, I see a job that is not complete. Racial and ethnic minorities are vastly under-represented in the current autism counts. Autism counts vary significantly by geography. Lastly, but certainly not least in importance, there is likely a vast pool of undiagnosed, underserved adults in this country. But, that is a topic where the mantra “absence of evidence is not the same as evidence of absence” is ignored in place of promoting an epidemic.

Ignoring the underserved is a truly shameful position that these organizations have taken.

However, I am pleased to see that within the Plan, ethnicity, race and lifespan issues are prominent. There is even a prominent statement in the introduction of the Plan on lifespan issues:

[Strategic Plan] Lifespan Perspective: Historically, ASD has been characterized as a disorder of childhood. Although most individuals with ASD will not outgrow their diagnosis, their symptoms will change in form and severity over time. There was great support during the development of this Plan for more research on ASD in older individuals, especially the need for practical strategies for increasing the quality of life and functioning of adolescents and adults with ASD. As individuals with ASD advocate for themselves and expand our knowledge of their experiences and needs, they become partners in the research effort.

Does that rise to the level of “urgency”? I don’t know, I’ll take “great deal of support” happily.

Urgency or politics?
The issues noted above highlight what I see as a big problem with this letter: it is attempting to make the Plan a political document, possibly acknowledging the “epidemic” of “vaccine injury” autism. I am not naive enough to think that there are no politics involved in government sponsored medical research, but the backbone of the NIH process is scientific peer review of research proposals. I’d rather see the Plan document stay closer to that ideal than become political fodder in a struggle that is ripping our community apart.

Such a short letter, so much to discuss. And, we are only at the first bullet point! But, even at this point, it is clear that this is a letter that doesn’t come close to representing the views of this member of the greater autism community.

More to follow…

Who makes up the autism community?

16 Nov

On a recent post, Sullivan asks why vaccines should be included in any strategic plan when ‘vaccines-cause-autism advocacy organizations can’t ask for it?’

Its a good point. What _I_ want to pick up on is the claim that some of the groups who co-signed the letter Sullivan refers to are in any way (as they claim to be) ‘the autism community’. Lets take a look at some of the biggest news events of the last five years related to autism.

The top stories from 2003 came in July of that year. Of the top 100, less than 10 mentioned vaccines. Of the other 90% of stories Generation Rescue mention none, SafeMinds mention none, ARI mention none, NAA mention none, OAR mention none, TACA mention none, Unlocking Autism mention none.

The biggest month for 2004 autism news was May. Non-vaccine stories (on page 1) accounted for 87%. Again, none of the above organisations discussed any of these stories.

The biggest month for autism news in 2005 was August. Of page 1 results, 19% mentioned vaccines (4 were from AoA and about 6 were about the death of Abubakar Nadama). Of the other 81%, none were mentioned by the above groups.

2006 and October is the busiest news month. 3% mention vaccines. Of the 97% of stories that don’t, the organisations above mention none.

2007 sees the busiest news month as April. Of the 93% that do not talk about vaccines, none of the above groups comment on their websites.

2008 – so far April is the busiest news month with 9 mentions of vaccines in the top 100 stories. Of the 91% not talking about vaccines, yep, you guessed it, none of the above organisations talk about the stories.

The single top story regarding autism this year was World Autism day. No mention of this on the websites of Generation Rescue, SafeMinds, NAA, ARI, OAR, TACA or Unlocking Autism.

And these are the people who claim to be the autism community?

The truth is that these people are a series of single issue groups concentrating on vaccines and autism. The truth is that fully 7 out of the 11 (63%) groups who co-signed this letter have no interest in autism beyond vaccines/toxins.

These groups do not, in any way shape or form represent the autism community. I hope the IACC see this clearly.

Why should the strategic plan include vaccines…

14 Nov

…if all the vaccines-cause-autism advocacy organizations can’t ask for it?

I’ve been watching the process for the IACC fairly closely. You may have noticed my obsession. One issue that has come up is…you guessed it, vaccines. IACC meetings have been available to listen to by phone. (thank you NIH!) I’ve listened to long…long…long…speeches about the importance of research on vaccines and mercury. It’s had very broad support from…well…Lyn Redwood and Mark Blaxill. Pretty much silence from the rest of the IACC.

That said, I can’t say I am not surprised that an 11th hour attempt to change the process. Yes, according to a letter sent to members of the IACC, “we as a community community” are “united” expressing disapproval for for the Strategic Plan in the current form. This isn’t new. In person and in letters, members of these organization have co-opted my rights into an “autism community” that supports their vaccine/mercury agenda.

But, it’s worth taking a look at the letter. Alternatively, you could trust me to tell you what I found. Better yet, let me tell you what I didn’t find: vaccines. No mention of the word vaccines…or mercury…or thimerosal…or immunization…or epidemic. I seriously had to check that the search function was working as I read that document.

Why point this out? To jab a little fun at our good friends? No, there is a much more important message here:

Take a look at the organizations that signed this letter:

Autism New Jersey
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

If they can’t agree on including “vaccine”, “mercury”, “epidemic” or any variation of those words—

WHY SHOULD THE IACC INCLUDE THOSE WORDS IN THE STRATEGIC PLAN????

Seriously, there has been a big push to get the IACC to make a strong statement on the vaccine issue. And yet, these words are missing from their own letter.

So, I’ll say it again: if Generation Rescue, SafeMinds and the rest can’t agree to put “vaccines” or “epidemic” in a letter, why should the IACC bow to their wishes and include these terms in the Strategic Plan?

David Kirby – Thimerosal does not cause autism

29 Oct

In something of a jaw-on-chest admission, David has finally admitted that thimerosal does not cause autism:

David Kirby, a journalist and author of “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy,” said he believed that thimerosal, which still exists in trace amounts in some childhood vaccines, was no longer the “smoking gun.” Several national studies have found no connection, and a California study found that, even after thimerosal was removed from vaccines, diagnoses of autism continued to rise.

I would go on to say then that the claim that mercury in vaccines ever caused a never-established autism ‘epidemic’ needs to be retracted also. I would further like to see David (who has appeared on TV, Radio and in the press speaking as if thimerosal was definitely the cause) question his previous belief that this was ever a medical controversy.

We need to be clear on this issue. In the US, the idea that mercury in vaccines cause autism is the reason so many parents are not vaccinating their children. David was the chief media spokesperson in this belief and whilst it is gratifying to hear him publicly admit thimerosal does not cause autism – it needs to be proclaimed widely and David needs be much more public than this.

However, its not all good.

But, he said, the links between vaccines and conditions like autism are still strong and more research is needed.

Conditions like autism or autism?

David seems to have moved from targetting thimerosal to simply targeting vaccines in general. Contrary to his statement that there are strong links between autism and vaccines, the fact is that there are none. No decent science supports this hypotheses and (with apologies to David) he has a now self-admittedly bad track record when talking about ‘strong links’ between vaccines and autism. David’s ‘strong link‘ between thiomersal and autism was CDDS data and we all know how that one turned out. I’d ask David to please consider very carefully his ideas about ‘strong links’ of today turning around to bite him in the future. Does international public health really need another three/four year gambol through the wilderness based on a non scientific ‘strong link’ which in reality is simply an opinion?

We all know the recent makeover the vaccine hypotheses has been getting. Generation Rescue now no longer claim that autism is simply mercury poisoning for which the cure is two years chelation resulting in a child 100% neurotypical, no different from their peers. SafeMinds – an organisation dedicated to Mercury in their very name – attack MMR, a vaccine that has never contained mercury. Jenny McCarthy is now on board and gives credence to the idea that an average parent (such as myself) knows more about the sciences of medicine, epidemiology, toxicology etc etc than specialists who have spent years in their field. Whilst at the same time Ms McCarthy simply cannot keep her story straight about incidents from her book or even when her son was recovered or not.

The inconsistencies mount and mount and whilst I am glad that David has admitted the non-role of thimerosal in autism causation this is simply the tip of the iceberg. Are Generation Rescue, SafeMinds, NAA, TreatingAutism, A-CHAMP queuing up to admit the same? Are these same organisation prepared to go back onto the same TV/Radio stations they first proudly proclaimed they knew the cause and had the cure and admit they were wrong? Or will it all continue to be held behind the Emerald City of the new ‘Green Our vaccines where we are urged to never, ever look behind the curtain in case we see the simple, obvious truth about the grand machinations?

Good Information being spread on Capital Hill

2 Oct

Last week, there was a briefing for U.S. legislators by Mr. David Kirby and Mr. Mark Blaxill. As you can imagine, the topic was vaccines and autism. As you can imagine, there were some inaccuracies and there was at least one outright misrepresentation.

I applauded an effort by Amy Pisani of Every Child By Two, who wrote the staffers ahead of the meeting. I was also appreciative of a letter by Voices For Vaccines.

Well, now I give a great big thank you to Congressman Waxman. Congressman Waxman is the chair of the Congressional Committee on Oversight and Reform. To put that in perspective, “Oversight and Reform” is the committee that Congressman Dan Burton used to investigate autism and vaccines. (a very good discussion of what went wrong there is in Autism’s False Prophets).

Congressman Waxman’s office sent out a “Dear Colleague” letter. It is a good, succinct discussion of autism and vaccines, and, as such, I think it worth posting. And forwarding to people who may have questions about this issue.

It’s also worth thanking Congressman Waxman for taking the time to work on autism issues.

Resources Regarding Vaccines and Autism

October 1, 2008

Dear Colleague,

Since 1998 some people have been raising concerns that there may be an
association between childhood immunizations and autism spectrum
disorder. I am writing to let you and your staff know that there are a
number of resources available to understand what the science says
about whether vaccines could contribute to autism.

Institute of Medicine report on vaccines and autism

In 1999 the Department of Health and Human Services contracted with
the Institute of Medicine (IOM) to review a number of different
vaccine safety issues and to make recommendations about future
research needs. IOM convened a committee of experts that was carefully
vetted for conflicts of interest. The committee issued nine reports,
all of which are available on line at: http://www.iom.edu/CMS/3793/4705.aspx.

In 2004, the committee issued its final report, which analyzed the
studies, published and unpublished, that looked at two theories:
whether the Measles-Mumps-Rubella (MMR) vaccine could cause autism;
and whether the mercury-containing vaccine preservative thimerosal
could cause autism. The committee concluded that the “evidence favors
rejection of a causal relationship between thimerosal-containing
vaccines and autism” and the committee also concluded that the
“evidence favors rejection of a causal relationship between MMR
vaccine and autism.” This report is available at:
http://www.iom.edu/CMS/3793/4705/20155.aspx.

Other resources on vaccines and vaccine safety

Since the IOM report was published there have been additional studies
that looked at a possible link between vaccines and autism. Below are
several other links to government or private organizations with
helpful information about the latest research into vaccines, vaccine
safety, and autism and vaccines:

The Centers for Disease Control and Prevention
http://www.cdc.gov/ncbddd/autism/vaccines.htm

National Network for Immunization Information
http://www.immunizationinfo.org

Institute for Vaccine Safety at Johns Hopkins University
http://www.vaccinesafety.edu

American Academy of Pediatrics
http://www.aap.org/healthtopics/Immunizations.cfm

Information regarding mitochondrial disorders and vaccines

Another concern that has received some attention is whether people
with mitochondrial disorders are more susceptible to vaccine injury.
This issue was in the media after it became public that in 2007, the
Vaccine Injury Compensation Program (VICP), the no-fault compensation
program for people who have been injured by immunizations, compensated
nine-year-old Hannah Poling for injuries she sustained from her
immunizations. Hannah Poling suffered from a mitochondrial disorder,
which is a genetic or acquired defect in the part of each cell that
helps produce energy. People with these disorders are susceptible to a
number of stressors, including fever, illness, dehydration and certain
kinds of medication. In Hannah Poling’s case, after her immunizations
she developed a fever, lethargy, irritability, and other symptoms of
encephalopathy. These symptoms worsened over a period of months to
includ! e muscle weakness and features of autism. Instead of taking
this case to the vaccine court, the VICP conceded the case and agreed
to compensate Hannah Poling.

This case raised concerns that there may be an association between
mitochondrial disorders and autism. Mitochondrial disorders are poorly
understood and there is much research that needs to be done. However,
according to the United Mitochondrial Disease Foundation: “There are
no scientific studies documenting that childhood vaccinations cause
mitochondrial diseases or worsen mitochondrial disease symptoms. In
the absence of scientific evidence, the UMDF cannot confirm any
association between mitochondrial diseases and vaccines.” This
statement is available at: http://www.umdf.org/site/c.dnJEKLNqFoG/b.3616911/apps/s/content.asp?ct=5087517.

Following this case, NIH, HHS, and CDC organized a workshop entitled
“Mitochondrial Encephalopathies: Potential Relationships to Autism.”
The workshop was held on June 29, 2008 in order to explore this
complicated topic and panelists included experts from around the
country. The proceedings from this workshop state that because
acquired infections and the associated inflammatory responses are a
known trigger for mitochondrial disease, “the workshop panelists
strongly encourage vaccinations in the hundreds of children they treat
for mitochondrial disease.” A summary of this workshop is available
at: http://www.ninds.nih.gov/news_and_events/proceedings/20090629_mitochondrial.htm

CDC has additional information on its website at:
http://www.cdc.gov/ncbddd/autism/mitochondrial.htm

I hope you find these links useful. If you are interested in other
resources, please do not hesitate to call Sarah Despres or Dr. Stephen
Cha on my staff at 5-5056.

Sincerely,

/s
HENRY A. WAXMAN
Member of Congress

Vaccines on the Hill III

26 Sep

Somehow I never thought there would be a “Vaccines on the Hill II”, much less III. That said, a question from Lisa (from about.autism.com) got me thinking and, well, I’d rather do this a post than a response.

I admit, this isn’t directly related to her comment, who commented on how David Kirby makes a point of stating he is not “anti-vaccine”.

Instead this is about frustrations with Mr. Kirby. As an example, let’s discuss how Mr. Kirby “quoted” a response that the CDC made to an NEIHS report in his congressional briefing. Yes, “quoted” is in quotes for a good reason.

On his presentation, page six, Mr. Kirby “quotes” (there’s those quotation marks again!) the NIEHS report:

NIH: “We identified several areas of weakness that were judged to reduce the usefulness of the VSD for addressing the potential association between exposure to thimerosal and risk of ASD.”

With the response from Dr. Gerberding at CDC of:

Gerberding General Response: CDC CONCURS

What was the real quote?

The panel identified several serious problems that were judged to reduce the usefulness of an ecologic study design using the VSD to address the potential association between thimerosal and the risk of AD/ASD.

Emphasis mine.

Yep. Mr. Kirby left out the fact that the NIEHS was specifically talking about ecological studies.

Makes a BIG difference in how that phrase is interpreted. This was a major part of two epiwonk blog posts, here and here. Mr. Kirby’s original blog post on this was retracted, so Mr. Kirby is well aware of the importance of the fact that the NIEHS limited the statement to ecological studies.

By the way, the real CDC response?

CDC Response: CDC concurs with this conclusion and does not plan to use VSD for ecological studies.

They did most certainly not concur with the statement that Mr Kirby “quoted”. Instead, they see the limitation for ecological studies. There is strength in using the VSD. They don’t see it as valuable for discussing the thimerosal/autism question, as we’ve discussed before.

Here’s the NEIHS report, and here, the CDC response.

Mr. Kirby’s “quote” of the NIH was incorrect. This isn’t incorrect in the way Dan Olmsted thinks that “has” vs. “have” is an important difference. No, the quote by Mr. Kirby completely changed the very meaning of the statement that NIEHS made and implied the CDC concurred with.

It sounds like Mr Kirby was caught red-handed trying it too, by a staffer who obviously came in very well informed. The bright side is that the legislature got an idea of Mr. Kirby’s tactics. The down side, they may not realize that the entire autism community is not represented by Mr. Kirby and his tactics.

This misinformation effort has already had an effect. Mr. Kirby’s original treatment of the CDC response made people think that the CDC position is that the Verstraten study was flawed. As epiwonk makes very clear, the opposite is true. The NIEHS panel suggested expanding the Verstraten study (which was not ecological) with additional years.

And people wonder why I get frustrated with Mr. Kirby.

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