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Kirby blows another irony meter

11 Feb

I need to find a source for militaryp-spec irony meters.

David Kirby has posted a piece on the Brian Deer investigation of Dr. Andrew Wakefield.

Here’s the comment that blew the irony meter:

Imagine if a US journalist sued a doctor for libel or misconduct, and then went to the NY Times and asked to be hired as a freelancer to cover the trial that they themselves had instigated in the first place. It wouldn’t happen.

So, David, you wrote “Evidence of Harm”, massively fanning the flames of the mercury causation theory.

You are now blogging on the Age of Autism blog.

Are you paid for that effort?

I haven’t seen a lot of non-vaccine/autism bylines for you in the past few years. So, if AoA is paying you, it would be a sizable fraction of your “journalist” salary.

If so, couldn’t it be well argued that you created your own “journalist” job?

Ironic, eh?

Ah well…as long as we are discussing Mr. Kirby, here is another of his comments:

In his writing, Deer claimed that Wakefield had made up results about severe MMR reactions in the children just days after receiving the shots, had ignored signs of autism in some kids before they received their MMR vaccine, and changed lab reports on the gut biopsies – among other alleged infractions that have been covered in the two year trial in London of Wakefield et al.

The accusations printed in the Sunday Times are, frankly, outlandish. And they are false.

Hmmm, false? Do you have the facts to back that up? Have you seen the medical records that Mr. Deer has reported on? It seems highly unlikely to this observer.

Let’s look at some of Mr. Deer’s claims:

Supposedly, Dr. Wakefield found measles RNA in the guts of his subjects. From Mr. Deer’s report, the father of child 11 from the Lancet study has stated that he had no fewer than 3 separate tests for measles RNA from the same gut biopsies that Wakefield tested. Three negative results.

Dr. Wakefield claimed that the children were developing normally before the MMR. According to the Deer article, another child from the original 12’s story:

The boy’s medical records reveal a subtly different story, one familiar to mothers and fathers of autistic children. At the age of 9½ months, 10 weeks before his jab, his mother had become worried that he did not hear properly: the classic first symptom presented by sufferers of autism.

Dr. Wakefield claimed that the 12 study subjects were presented sequentially to his hospital, indicating that they were randomly selected. And, yet, none of them were in the Royal Free Hospital’s catchment area–or even the greater London area. That’s one fact that doesn’t take access to the GMC’s records. And it demonstrates a clear non-random nature to the subject choice.

How about the report by Dr. Wakefield that the subjects had regressions shortly after their MMR shot? Again, from Mr. Deer’s article:

This was Child Two, an eight-year-old boy from Peter-borough, Cambridgeshire, diagnosed with regressive autism, which, according to the Lancet paper, started “two weeks” after his jab.

However, this child’s medical records, backed by numerous specialist assessments, said his problems began three to five months later.

A pretty major disconnect between Dr. Wakefield’s story and the medical records.

How about the measles-in-the-gut theory? Dr. Chadwick, working in Dr. Wakefield’s own hospital, testified in the Omnibus proceeding that he told Dr. Wakefield pre-publication that the PCR data directly contradicted the results Dr. Wakefield was publishing. Dr. Wakefield knew when he published that there were good data that showed he was incorrect. How did you sweep that under the rug, Mr. Kirby?

Did Dr. Wakefield fabricate results or is there another reason why he got a lot of very important facts wrong? I don’t know, but I do agree with Dr. Fitzpatrick who asked why Dr. Wakefield’s papers have not been retracted. They should be.

(And I thought Dierdre Imus wrote the worst blog post of the day!)

post-publication note: Dr. Mike Fitzpatrick has written an excellent article on Dr. Wakefield’s studies, including the recent information from Mr. Deer.

Support a Disability-Friendly Stimulus

9 Feb

As noted recently on this blog, the U.S. economic stimulus package may have a big impact on the disability community.

I have concentrated on special education funding, but it goes deeper than that.

ASAN has an action alert on the change.org website. You can fill out a message and it will be sent to your legislators.

From the website:

Today, the Senate will likely pass stimulus legislation that includes substantial cuts in special education, vocational rehabilitation and other disability-related spending provisions as compared to the House version. Afterwards, the Senate and House will reconcile the bills and come up with a consensus version. This action alert enables you to tell your legislators how important it is to keep disability spending provisions fully funded as in the House version.

Please (PLEASE) take a minute and send the message.

The vaccine-autism org spin on the IACC

2 Feb

The vaccine-oriented autism orgs are claiming that the IACC acted improperly when they removed the vaccine initiatives from the Strategic Plan. They claim that this wasn’t on the agenda. Uh, yeah.

Let’s take a second look at this, eh? Because, from what I can see, not only is there a lot of spin being added to this story, the spin is filled with hypocrisy.

These vaccine initiatives were added at the December IACC meeting. Here’s the agenda for that meeting. I don’t see where it says, “Add new initiatives”.  And, yet, here they are in the draft of the Plan.  Note that the vaccine initiatives are in all red–they were added at that meeting.

That’s not “according to procedure”, if we take the SafeMinds/TACA/GR/NAA spin where it has to be clearly in the agenda.

It isn’t even “according to procedure” in the real sense.  Science based initiatives are supposed to be generated by subcommittees who vet them based on need and whether they have a reasonable scientific basis.

Or, to put it another way–vaccines were added to the Plan at the last minute as part of an end-run around the system by Lyn Redwood. And, now, she and the vaccine-orgs are complaining that the removal of these initiatives is part of a “improper action” or some such nonsense because it wasn’t in the agenda.

Not merely a weak argument, but hypocritical as well.

Let’s take a look at some similar actions.  The January IACC meeting included an attempt by Lyn Redwood to basically rewrite the introduction to the Plan. (By the way, one of the IACC members called Lyn Redwood out (politely) on her constant attempts to rewrite the Plan, noting how this has delayed the entire process considerably. Thank you, whoever you are.)

Let’s take a look at the agenda for the January meeting. Do you see any mention of rewriting the introduction in there? I don’t. So, what do we have here? We have Lyn Redwood attempting to circumvent the procedure and introduce new initiatives outside of the process. Then, when they are removed, she cries foul, claiming that others are working outside of the process?!?

Clearly, this is a political move.  Adding vaccines to the Plan was a political move, not a scientific move.   The complaints lodged against the removal of the vaccine initiatives are political, not reality based.

And, while all this plays out, good research is stalled.

That’s a complete shame.

Strategic Plan: fact and fiction

2 Feb

If you’ve been reading some of the autism blogs lately, you’d think that the only question that the NIH has to consider on autism is whether to study vaccines. That’s because, it’s all the autism organizations seem to be talking about with respect to the IACC and the NIH.

Yes, I’ll admit I’ve contributed to the pervasiveness of the vaccine discussion by responding to those blogs. Just to get that out.

The big stink lately is the fact that the vaccine-specific initiatives were voted out of the IACC’s Strategic Plan in January. Autism Speaks and the small groups like Generation Rescue, NAA, TACA and SafeMinds (as an aside—why are there so many clone orgs? Do they really represent different views?) all issued statements or harsh words about this change.

The story being propagated is basically this: “All the money is going into genetic research. We asked for this small thing and they blocked it”

So, let’s do something different than the vaccine-orgs, eh? Let’s look at some of the initiatives that are still in the Plan. Let’s discuss what is really happening on that front. There is a lot more to discuss about the reality of the Plan, but I figure since no one wants to actually look at the initiatives, it’s fertile ground.

The Plan is divided into section (think chapters) according to “questions”. Let’s look at a few sections and pick a few initiatives out to consider.

Question 1: When should I be concerned?

Identify a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014. Estimated cost: $30,000,000 over 5 years.

Develop at least five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015. Estimated cost: $40,000,000 over 5 years.

Holy Moly! I’d expect end-zone victory dances over something like that–$30M for biomarkers? Another $40M that includes biological heterogeneity? Isn’t this exactly what these organizations claim they want—recognition and research into the biological underpinnings of autism?

Instead of victory dances, we get silence from the vaccine-orgs on these initiatives. It’s all “what happened to vaccines!”

Here’s one that I wouldn’t expect them to trumpet, but my eye was captured by this:

Validate and improve the sensitivity and specificity of new or existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012. Estimated cost: $5,000,000 over 3 years.

My eye was captured, but that’s because I am really into the idea of identifying underserved populations like adults, and racial and ethnic minorities. I don’t expect the vaccine-orgs to support this since admitting there are underserved populations threatens the “epidemic”, so I didn’t expect the vaccine-oriented organizations to comment on that.

OK, let’s move on to the next “question”:

Question 2: How can I understand what is happening?

Support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the central nervous system that may underlie the development of ASD during prenatal-postnatal life by 2010. Estimated cost: $6,000,000 over 4 years.

Whoa! Did I read that correctly? $6M for studies on immune system interactions in the development of ASD? And, from the vaccine-orgs that called for this research? The sound of one hand clapping?

OK, the really big study for this section is this one:

Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of children, with a special emphasis on females, youths, and adults with ASD change over time as compared to typically developing individuals by 2020. Estimated cost: $50,000,000 – $100,000,000 over 12 years.

Again, they are tracking the “biological” side of autism. Not a word of welcome from the vaccine-orgs.

The study above is one of the most critical that the Plan can call for, in my most humble opinion. How many times have we all asked or read others ask, “how will things look into the future?” Wouldn’t that really help answer questions about who “recovers”? Won’t Seriously, wouldn’t it be nice to understand how many people show large gains? Although lets face it, it happens even without “biomed”.

And, yes, I am very glad to see the extra emphasis on adults and females as well, by the way.

Question 3: What caused this to happen and how can it be prevented

This is the section where the vaccine initiatives were shoehorned in. Let’s take a look at what is still in.

Check out this big one:

Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. Estimated cost: $40,000,000 over 5 years.

Wow! $40M in gene/environment interactions. How much closer to the supposed agenda of the vaccine-orgs can one get? And yet, once again, the vaccine-orgs aren’t talking about it.

How about two more initiatives:

Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. Estimated cost: $10,000,000 over 5 years.

Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. Estimated cost: $10,000,000 over 5 years.

Another $20M on environmental issues.

I think the point is made—just in this list there are something like $100M to $200M in funding for the biology of autism and environmental factors.

Why don’t the vaccine-orgs talk about these initiatives? One could speculate that it hurts their political maneuvering complaining about the removal of the vaccine initiatives. “Senator, they gave us $100M for exactly what we asked for, but we didn’t get everything”. Doesn’t sound so good, does it?

But, and this is important, these same vaccine orgs weren’t trumpeting the inclusion of all these biology and environment initiatives even before the vaccine initiatives were removed.

That’s why I keep referring to them as “vaccine-orgs”. It seems vaccines are the one and only issue they care about. Sure, they gave some lip-service to environment and biology. But now it’s as if these initiatives don’t exist and aren’t important. If you listen to their spiel: “Poor us, we asked for this small vaccine initiative, but all we got was genetics”.

Genetics? Yep, it is in the Plan. And rightly so, I will add. There is real evidence for genetic links to autism. If we are to understand autism, even environmental causes, we need to have the genetic information. Take this initiative, for example:

Identify genetic risk factors in at least 50% of people with ASD by 2014. Estimated cost: $30,000,000 over 6 years.

That’s a big project, and that’s what the vaccine-orgs would like everyone to think is the core of the Strategic Plan. But, as we’ve seen, it just isn’t fair to paint the Plan as emphasizing genetics while ignoring environment and biology.

There is a big push right now to stall the Strategic Plan (as though it hasn’t been delayed enough already by the constant attempts to rewrite the Plan by Lyn Redwood. If you think I am the only one who thinks this, listen to the last IACC meeting.) Yes, the same organizations who called for research into the environment and gene-environment interactions are willing to stall that research for one reason: vaccines.

Who thinks that TACA or Generation Rescue or any of the other small orgs would sit quietly by and see all this research stalled if it weren’t for the possibility of getting vaccines into the Plan?

Why should the rest of us sit quietly and let them stall progress towards a Strategic Plan that includes good research projects on topics like lifespan issues?

We shouldn’t.

Autistic and in New Jersey? Governor Corzine needs your input

26 Jan

Autism is too often characterized as being something affecting children or families with children with autism. New Jersey has established an “Adults with Autism Task Force”. This is a great opportunity to be heard. The survey below gives those in New Jersey exactly this opportunity.

ASAN highly encourages eligible people to fill out this survey.

NJ Adults with Autism Task Force Informational Survey

From the survey page:

In September 2007 Governor Corzine signed into law legislation establishing the New Jersey Adults with Autism Task Force (NJAATF). The purpose of the NJAATF is to develop a comprehensive and actionable plan for meeting the various needs of adults with autism living in the State of New Jersey. This survey will provide valuable insight in forming the recommendations included in this plan.

If you reside in New Jersey and are 1) an individual with autism over 12 years of age, or 2) a parent or guardian of an individual with autism over 12 years, please consider taking a few minutes to answer the following. If you are a parent or guardian, please answer all questions with respect to the individual on the Autism Spectrum. For example, the address should be that of the Autism Spectrum Disorder (ASD) individual. The average time for this survey is 10 minutes. If you receive this survey more than once, please respond only once.

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.

Disability Groups Send Recommendations to Obama

16 Jan

I got the below through Ari Ne’eman at ASAN. This is the sort of advocacy I like to see: broad in scope, broad in support. I like seeing Autism organizations working with other disability org’s.

____________________________________

Disability Groups Send Recommendations to Obama

Dear President-elect Obama,

Congratulations on capturing the hearts, minds, and hopes of our nation! As grassroots, community-based, consumer-controlled disability organizations, which collectively represent over 50 million Americans with the full spectrum of disabilities, we look forward to working with you and your administration to make cost-effective policy changes to enhance the lives of and restore the civil liberties Americans with disabilities.

Attached you will find nine summaries of the top policy issues facing Americans with disabilities. Taking action on your commitment and these policy measures will not only benefit citizens with disabilities, our nation’s wounded warriors, and the ever-growing aging population, it will benefit all Americans and save our government millions of dollars as individuals with disabilities become full participants in society.

They include:

· Employment: Reversing the persistently high percentages of people with disabilities who are not working but are ready, willing and able to work;

· Education: Increasing access and opportunities for physical activity, and improving quality;

· Health Care: Improving access and decreasing disparities and inequities;

· Home and Community-based Services (HCBS): Promoting effective community-based services as alternatives to costly nursing homes and other institutions and increase the FMAP to states;

· Disability Research: Promoting a quality of life and participation-based research agenda;

· Civil Rights: Reinvigorating civil rights enforcement, extending access requirements to new technologies, and continuing to restore protections stripped away by hostile courts;

· Human Rights: Protecting human rights of individuals with disabilities at home and abroad;

· Emergency Preparedness, Response and Recovery Needs: Planning, coordinating, and providing resources to support people with disabilities before, during, and after a crisis; and

· Genetic Science and Technology: Promoting ethical use of new technologies.

Like you, we stand and sit on the shoulders of so many who have come before us. As our nation approaches the 20th anniversary of the Americans with Disabilities Act in 2010, we embrace the disability rights principle, “Nothing About Us, Without Us.” For too long others claimed the need to speak for us, but no other group – professionals or relatives – speak for us.

Additionally, we urge you to embrace the fundamental principles for sustainable change, which are essential elements to building healthy, resilient, empowered communities. As you move forward with deliberate speed and consideration, we urge your administration to:

· Provide oversight of federal agency public policy, regulatory, and enforcement actions, and collaborate with consumer and community-based disability organizations as partners to better serve the ever-expanding population of more than 50 million Americans with disabilities;

· Hire qualified professionals with disabilities, who have expertise in policy areas, throughout the administration, including a Special Assistant to the President on Disability Policy;

· Include individuals with disabilities in policy formation in all areas addressed by the administration, and integrate representatives of our community on all advisory boards of all major agencies;

· Provide services that serve people with disabilities across the life span, from cradle to grave, and all those with increased needs for health care, health promotion, and long-term services and community-based supports;

· Incorporate consumer-directed services and include consumers in policy development;

· Embrace the disability experience as part of culturally competent policy and diversity at all levels of planning, policy formulation, implementation, and evaluation; and

· Focus on “universal design” as a cost-effective innovative way to enhance the quality of life and level of participation of all Americans in community life and incorporate it into infrastructure changes in the economic stimulus package so we upgrade the infrastructure for all to use;

Thank you for your support of the need for the federal government to be “diligent about making sure the states enforce the rights affirmed by the Olmstead decision.” Enabling people with disabilities to live independently in their own homes and communities, rather than being forced into costly Medicaid-funded nursing homes and other institutions will ensure civil liberties, enhance the quality of life and full participation of all Americans by creating stronger, sustainable communities of inclusion and acceptance to honor the 10th Anniversary of the Olmstead decision.

As a community of individuals with disabilities, we ask for nothing more than what other Americans expect and already have. We seek inclusion. We seek a voice for the disability rights message in the change you create. As you create more jobs for Americans, include jobs for Americans with disabilities. As you improve education for America’s students, include students with disabilities. As you improve the healthcare system, include the healthcare needs of individuals with disabilities. As you restore civil rights to Americans, include the civil rights of individuals with disabilities. To paraphrase your now immortal words, – We are not a nation of disabled and non-disabled Americans. We are the United States of America.

We stand ready to work with you and look forward to an opportunity to discuss our priorities with you personally in the coming months.

Sincerely,

American Association of People with Disabilities (AAPD)

Access Living

American Disabled for Attendant Programs Today (ADAPT)

Autistic Self Advocacy Network

Boston Center for Independent Living (BCIL)

California Foundation for Independent Living Centers (CFILC)

Disability Rights Education and Defense Fund (DREDF)

Generations Ahead

Little People of America

Metro-West Center for Independent Living (MWCIL)

National Association of the Deaf (NAD)

National Coalition for Disability Rights (NCDR)

National Coalition of Mental Health Consumer Survivor Organizations

National Council on Independent Living (NCIL)

National Empowerment Center

National Federation of the Blind (NFB)

Self Advocates Becoming Empowered (SABE)

Special Olympics

Texas State Independent Living Council (TX SILC)

World Institute on Disability (WID)

For Policy Recommendations on each policy issue click links above

—
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

IACC Plan has no vaccines, Alison Singer resigns from Autism Speaks

16 Jan

There was just no way I could listen in to the last IACC meeting. I have been keeping up with all the meetings, but yesterday it was not to be.

I knew it was going to be big, but it was way big. David Kirby tipped the hand when he blogged about how the Strategic Plan was going to include vaccine related research. Strange move–why blog about it before it was set in stone? Why not blog about it right after the December meeting when the language was discussed? A suspicious person would think that Mr. Kirby got wind that the vaccine language was in danger.

And, so it was. Here is a press release:

ALISON SINGER ANNOUNCES HER RESIGNATION AS EXECUTIVE VICE PRESIDENT OF AUTISM SPEAKS

Disagreement on Vaccine Research Prompts Departure

NEW YORK, NY (January 15, 2009) – Alison Tepper Singer, executive vice
president of communications and awareness for Autism Speaks, today
announced that she has resigned from her position with the advocacy
organization, effective next month.

“It has been an honor and a pleasure to help to build this
organization into the preeminent autism advocacy group — the group
that has, in fact, elevated the word “autism” to the global
vocabulary,” said Singer. “I am grateful to Autism Speaks founders Bob
and Suzanne Wright for their leadership, insight, commitment and for
the tremendous support and love they have shown to my family and me.”

“However, for some time I have had concerns about Autism Speaks’
policy on vaccine research. Dozens of credible scientific studies have
exonerated vaccines as a cause of autism. I believe we must devote
limited funding to more promising areas of autism research.”

Singer resigned prior to the January 14th Interagency Autism
Coordinating Committee (IACC) meeting, at which the discussion of
vaccine research was to be continued from the December meeting, at the
request of one of the public members. Knowing she might cast a vote
with which Autism Speaks might disagree, she resigned from Autism
Speaks prior to the meeting. Singer serves as a public member of the
IACC and will continue to serve until 2011. She was appointed to the
IACC by outgoing HHS Secretary Michael Leavitt in 2007.

The IACC, created via the Combating Autism Act of 2006, is responsible
for coordinating all efforts within the Department of Health and Human
Services (HHS) concerning autism spectrum disorder, including drafting
a Strategic Plan for autism research with budgetary requirements. At
the January meeing, the IACC voted to seek input on two proposed
studies of vaccines and autism from the National Vaccine Advisory
Committee Safey Working Group (NVAC), an HHS group specifically
charged with undertaking and coordinating scientific review of the
federal vaccine safety system, prior to including the proposals as
specific objectives in the strategic plan. Singer voted in favor of
this motion.

Singer was the first professional hired by Autism Speaks when it
launched in 2005. She served as interim CEO for three months, then as
senior vice president and later as executive vice president. She also
served as a staff member of the board of directors until her
resignation. Singer has been responsible for directing the
organization’s award-winning awareness and strategic communications
programs, including its work with the Ad Council which was awarded
aprestigious “Effie” award in 2008 in recognition of the 43 percent
increase in overall autism awareness directly attributable to the
campaign. She also serves on the Executive Committee of the YaleChild
Study Center and on the board of directors of Autism Spectrum News, as
well as on numerous state and local autism advocacy committees. She
has appeared on Oprah, The Apprentice, NBC Nightly News, Good Morning
America, CBS Early Show and numerous other news programs discussing
autism issues.

“My work with Autism Speaks and within the advocacy community has been
exceptionally rewarding, and I will continue to advocate on behalf of
my daughter, my brother and the millions of others affected by autism
spectrum disorder,” said Singer.

Autism Speaks has its own press release.

NEW YORK, NY (January 15, 2009) – 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.

IACC met yesterday at the NIMH in Bethesda, MD, to finalize the Strategic Plan. As mandated by the Combating Autism Act of 2006, IACC must develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder (ASD) research, including proposed budgetary requirements.

“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

Five of the six public members voted against this revision. Autism Speaks Executive Vice President Alison Tepper Singer was the sole public member to cast a vote in support. The evening prior to the vote, Singer submitted her resignation to Autism Speaks – which was accepted – based on her intention to vote on certain Strategic Plan vaccine safety matters in a way that diverged from Autism Speaks’ position on this issue. Thus, in casting votes on January 14, she was acting as an individual public member of IACC and no longer as a representative of Autism Speaks.

“We are hopeful that the new administration will fulfill the intent of the Combating Autism Act and truly value and respect the input of the autism community,” added Wright. “It is imperative that we move forward and ensure that there is a Strategic Plan that meets the needs of the autism community. Autism Speaks is committed to being part of that process.”

Wow.

I have to point out something rather odd in the Autism Speaks version. Note that they claim

“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”

This is given as the reason why they are withdrawing their support for the Plan, by the way.

Why point this out? How did Alison Singer know the night before to resign if there was no forewarning? How did Autism Speaks accept the resignation if there was no forewarning? And, in the speculation realm, why did David Kirby blog about the vaccine provisions if there was no idea that those provisions were in danger? As I noted above, the natural time to blog it was right after the December IACC meeting, but he delayed for some time. Come on, Autism Speaks. Admit it, you are pulling support because you wanted vaccine language, not because this was a surprise.

It took guts to do what Ms. Singer did. I know I can expect comments pointing back to the Autism Speaks video that Ms. Singer participated in, but I’d like to stress: it took a lot of guts to do what she did.

Oh yeah, Autism Speaks: You don’t speak for the “autism community” any more than Generation Rescue does. You certainly don’t speak for me on this issue.

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Paul Offit in the New York Times

13 Jan

Paul Offit is in the NYT today talking about his book:

A new book defending vaccines, written by a doctor infuriated at the claim that they cause autism, is galvanizing a backlash against the antivaccine movement in the United States.

which is true. For the first time in the nearly six years I’ve been blogging about autism and vaccines, things are happening beyond the stale, jargon filled denouncements appended to the end of news pieces about autism and vaccines. Doctors in the US and UK are wising up to the very real health dangers – and dangers posed to autism research – posed by the antivaccine/autism lobby. I’ve seen health experts on TV over here, read many interviews with actual doctors and scientists in both countries and am aware of plans to carry the message much, much further and harder than ever before. Its about time.

Offit again mentions the threats he’s received and Dr. Gregory A. Poland mentions threats his kids, something that Offit has also received, as have I and several other autism parents who don’t believe vaccines cause autism. Some scoff at that according to the NYT article. I would suggest that that displays a level of arrogance and head-burying that is unhealthy.

However, I think some of the scientists involved are naive or simply don’t understand the level of blind fanaticism they are dealing with:

If the surgeon general or the secretary of health or the head of the C.D.C. would come out and make a really strong statement on this, I think the whole thing would go away,” said Dr. Peter J. Hotez, president of the Sabin Vaccine Institute, who has a severely autistic daughter…

With respect to Dr Hotez, thats living in a fantasy world. What would happen is that certain factions would simply do what they try to do to Dr Offit, Dr Poland, Dr Shattuck, him (if he knew it), me, Kathleen, Kristina, Amanda, Orac, Joseph, Do’C (the list goes ever on) and now Josh and Ben from Change.org – they would suggest that the Surgeon General had become a pharma shill. They would wheel out the same tired old statements from ex-heads of NIH etc, people who have no relevance and no ideas and the whole thing would just go around and around.

To be 100% honest, the best thing to do with these people is buy them an island somewhere, transport them to it and let them live out their lives totally organically and naturally. Two birds, one stone.

But seriously, you will never, ever get through to these people. They cannot be reasoned with. To quote Lord Byron:

Those who will not reason are bigots, those who cannot are fools, and those who dare not are slaves.

Leading members of Generation Rescue are quoted in the piece:

We have hundreds of fully recovered children. I’m very frustrated that Dr. Offit, who’s never treated an autistic child, is spending his time trying to refute the reality of biomedical recovery.

He…condemned threats generally, saying he had received some himself. “No one should ever do that to another human being,” he said.

This is a constant source of puzzlement to me as I keep hearing about these ‘hundreds of full recovered children’ (didn’t it used to be thousands?) and yet a search of PubMed for these case studies show nothing at all.

So where are they? Much like David Kirby with his claim HHS have said vaccines caused Hannah Poling’s autism when they have not, this is yet another soundbite with no substance at all to back it up. How long can one keep making such wild claims without a shred of evidence to support them? How long before one’s own conscience starts to trouble you?

Many doctors now argue that reporters should treat the antivaccine lobby with the same indifference they do Holocaust deniers, AIDS deniers and those claiming to have proof that NASA faked the Moon landings.

I agree. But whilst we live in a society that thinks Jenny McCarthy is capable of offering medical advice and the media love celebs more than people it ain’t going to happen. Medical science needs to carry on fighting and fighting harder.

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