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IACC Issues Statement Regarding Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder

7 Apr

The update of the DSM to the DSM-5 was met with a great deal of discussion by the autism communities. The U.S. Interagency Autism Coordinating Committee (IACC) has prepared a statement “IACC Statement Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder“. The statement can be found online and as a pdf.

The press release for the statement is below.

For Immediate Release
Wednesday, April 2, 2014

Contact: Office of Autism Research Coordination/NIH
E-mail: IACCPublicInquiries@mail.nih.gov
Phone: (301) 443-6040

IACC Issues Statement Regarding Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder (PDF – 115 KB)

Today, on World Autism Awareness Day 2014, the Interagency Autism Coordinating Committee (IACC) issued a statement regarding the scientific, practice, and policy implications of changes in the diagnostic criteria for Autism Spectrum Disorder (ASD) that were made in the most recent update of the Diagnostic and Statistical Manual of Mental Disorders (DSM). This link exits the Interagency Autism Coordinating Committee Web site

In 2013, DSM was revised for the release of its fifth edition, consolidating previous autism-related diagnoses together into a single “autism spectrum disorder” diagnosis defined by two groups of symptoms—social communication impairments and restricted, repetitive behaviors—while including intellectual and language disabilities as additional labels that can be added onto a primary ASD diagnosis.[1, 2] To address a variety of issues surrounding the implementation of the new criteria, the IACC assembled a planning group composed of IACC members and invited experts in the field to advise the IACC on this subject.[3] Based on the group’s findings, the IACC issued a statement, describing a range of scientific, practice, and policy implications that have arisen as a result of the changes in the DSM criteria, and providing recommendations for future research and implementation of the new criteria.

“The new criteria reflect advances in our understanding of ASD. At the same time, many in the community have raised questions about how the changes will affect people in the community,” stated Dr. Geraldine Dawson, who chaired the DSM-5 planning group. “In this report, we considered how the diagnostic changes might affect individuals and families, as well as the future of the field, and tried to anticipate needs that will arise in the research, clinical practice, and services arenas. We hope this report will help address some of the concerns that have been raised and provide valuable guidance to individuals, families and professionals.”

In the statement, the IACC acknowledged concerns about the potential for changes in the diagnostic criteria to impact access to services, urging that, “Any revision of the diagnostic criteria must be made with great care so as to not have the unintended consequence of reducing critical services aimed at improving the ability of persons with autism.” The Committee recommended research to further assess the reliability and validity of the DSM-5 ASD criteria, and to understand the potential impact of these new criteria on diagnosis, prevalence estimates, and access to services.

The IACC also identified several key practice and policy issues that will be important for the community to consider as DSM-5 is implemented in real-world settings, especially with respect to services. As the new criteria have not yet been rigorously tested in young children, adults and ethnically-diverse populations, the Committee cautioned clinicians to pay special attention to individuals with obvious ASD symptoms who narrowly missed being diagnosed with ASD according to the new criteria. In addition, the Committee strongly emphasized that, “Services should be based on need rather than diagnosis; it would not be appropriate for a child to be denied ASD-specific services because he or she does not meet full DSM-5 criteria if a qualified clinician or educator determines that the child could benefit from those services.”

With this statement and its list of recommendations for future research, practice and policy, the IACC endeavors to support implementation of DSM-5 with appropriate caution and rigor. Using these criteria to benefit people with ASD remains the primary goal, ensuring access to interventions, services and supports that will help people on the autism spectrum optimize their health and well-being, and meaningfully participate in all aspects of community life.

References

1 American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Health Disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.

2 Diagnostic Criteria for ASD from the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)

3 Roster of the IACC DSM-5 Planning Group

DSM-5 Resources

Additional resources related to the DSM-5 and autism spectrum disorder can be found on the IACC website.

Note: I serve as a public member to the IACC but my statements here and elsewhere are my own.


By Matt Carey

Presidential Proclamation — World Autism Awareness Day, 2014

6 Apr

April is Autism Awareness month and April 2nd was World Autism Awareness day. Below is the Presidential Proclamation about this.

Presidential Proclamation — World Autism Awareness Day, 2014

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Each year, people across the globe take time to recognize the millions of people living on the autism spectrum, including 1 out of every 68 American children. Americans with autism contribute to all aspects of society and are an essential thread in the diverse tapestry of our Nation. On World Autism Awareness Day, we offer our support and respect to all those on the autism spectrum.

Because our whole Nation benefits when Americans with autism succeed, we must ensure our health care and education systems work for them. Thanks to the Affordable Care Act, insurers can no longer deny coverage to people because they have autism, and new plans must cover preventive services — including autism and developmental screenings — at no out-of-pocket cost to parents. My Administration remains committed to eliminating discrimination against students with autism and to giving schools the resources to help them hone unique talents, overcome difficult challenges, and prepare for bright futures.

We must also do more to improve our understanding of the autism spectrum, which is why I was proud to sign legislation that continued critical investments in research, early detection, and support services for children and adults with autism. Last year, I launched the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, a program that aims to revolutionize our understanding of the human mind. By unlocking new knowledge of the brain, we can pave the way for myriad medical breakthroughs, including a greater appreciation for the science of autism. What makes America exceptional are the bonds that hold together the most diverse Nation on earth. Today, let us celebrate our differences — but let us also acknowledge our responsibilities to each other and move forward as one.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim April 2, 2014, World Autism Awareness Day. I encourage all Americans to learn more about autism and what they can do to support individuals on the autism spectrum and their families.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of April, in the year of our Lord two thousand fourteen, and of the Independence of the United States of America the two hundred and thirty-eighth.

BARACK OBAMA


By Matt Carey

IACC Meeting this Tuesday

6 Apr

The U.S. Interagency Autism Coordinating Committee (IACC) will meet this Tuesday, April 8. The meeting will be held at the NIH campus in Bethesda, Maryland. For those who can not attend in person, the meeting is videocast live and a listen-in conference call number is available (Dial: 888-950-8042, Access code: 8689681)

The draft agenda is below.

9:00 AM Welcome, Introductions, Roll Call and Approval of Minutes

Thomas Insel, M.D.
Director, National Institute of Mental Health (NIMH) and Chair, IACC

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination (OARC), NIMH and
Executive Secretary, IACC

9:15 Science Update

Thomas Insel, M.D.
Director, NIMH and Chair, IACC

9:30 CDC Prevalence

Jon Baio, Ed.S.
Epidemiologist
U.S. Centers for Disease Control and Prevention (CDC)

10:00 Birth to 5: Watch Me Thrive!

Linda Smith
Deputy Assistant Secretary and Inter-Departmental Liaison
Early Childhood Development
Administration for Children and Families (ACF)

10:15 Break

10:30 The White House BRAIN Initiative

Story Landis, Ph.D.
Director, National Institute of Neurological Disorders and Stroke (NINDS)

10:45 Autism Research Program (ARP), Congressionally Directed Medical
Research Programs (CDMRP)

Donna Kimbark, Ph.D.
Program Manager, Autism Research Program, Congressionally Directed
Medical Research Programs
U.S. Department of Defense (DoD)

11:15 Teaching a Neurodiversity Course

John Elder Robison
Self Advocate, Parent, Author
Neurodiversity Scholar in Residence
College of William & Mary

11:35 Lunch

1:00 PM Public Comment

1:45 Discussion of Public Comment

2:00 Services Research for Autism Spectrum Disorder across the Lifespan
(ServASD)

Denise Juliano-Bult, M.S.W.
Program Chief, National Institute of Mental Health (NIMH)

2:15 TBD

2:30 Committee Business

Thomas Insel, M.D.
Director, National Institute of Mental Health (NIMH) and Chair, IACC

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination (OARC), (NIMH) and
Executive Secretary, IACC

3:30 Break

3:45 Committee Business – continued

4:00 Round Robin

5:00 Adjournment

Note: I serve as a public member to the IACC but all statements here and elsewhere are my own.


By Matt Carey

Meeting of the Interagency Autism Coordinating Committee

11 Mar

The U.S. Interagency Autism Coordinating Committee (IACC) will meet next month. People are invited to attend in person, by phone or webinar. People are also invited to submit written comments or present comments live.

Note: I serve as a public member to the IACC but all comments and opinions here and elsewhere are my own.

Here is the announcement:

Meeting of the Interagency Autism Coordinating Committee

Please join us for an IACC Full Committee meeting that will take place on Tuesday, April 8, 2014 from 9:00 a.m. to 5:00 p.m. ET at the National Institutes of Health, 31 Center Drive, Building 31, C Wing, 6th Floor, Conference Room 10, Bethesda, MD 20892. Onsite registration will begin at 8:00a.m.

Agenda: The committee will discuss committee business, agency updates and issues related to autism spectrum disorder (ASD) research and services activities.

Meeting location:
National Institutes of Health
31 Center Drive
Building 31, C Wing, 6th Floor, Conference Room 10
Bethesda, MD 20892

Nearest Metro stop:
Medical Center – Red Line

In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus. All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit.

Pre-Registration:
The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Please visit the IACC website for access and information about registering.

Public Comment – Deadlines:
Notification of intent to present oral comments: Tuesday, April 1st by 5:00p.m. ET
Submission of written/electronic statement for oral comments: Wednesday, April 2nd by 5:00p.m. ET
Submission of written comments: Wednesday, April 2nd by 5:00p.m. ET

Remote Access:
The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will only be able to listen to the meeting.

Conference Call Access
USA/Canada Phone Number: 888-950-8042
Access code: 8689681

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least five days prior to the meeting. If you experience any technical problems with the conference call, please e-mail at helpdeskiacc@gmail.com or call the IACC Technical Support Help Line at 415-652-8023.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about prior IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

More Canary Party financial documents

2 Mar

The Canary Party grew out of the “vaccines caused an autism epidemic” movement. It’s a small group based in Minnesota. They bill themselves as:

The Canary Party is a movement created to stand up for the victims of medical injury, environmental toxins and industrial foods by restoring balance to our free and civil society and empowering consumers to make health and nutrition decisions that promote wellness.

Last July I wrote about their financial documents in Financial documents for the Canary Party. In that article I made the incorrect statement: “The Canary Party is not a charity, so they do not file form 990′s with the IRS.”

It turns out that they do file form 990. I can’t find them on Guidestar (perhaps because they are new?), but I found this one online. It’s for 2011, when the party formed.

When I wrote last July about the Canary Party, I noted that the financial statements on the Minnesota State Websites indicated that in their founding year (2011) they were largely funded by donations from Canary Party members/officers/founders Jennifer Larson ($40,665) and Mark Blaxill ($15,000).

The form 990 linked to above was an amended form, filed in July of 2013. Coincidentally, filed 10 days after my article about their financials. Per that amended IRS tax form for 2011, those amounts were not donations but loans.

The description of the organization’s mission is given as:

The time has come for a change. The mounting crisis in the health of children and other vulnerable groups has not only been ignored by medical authorities, it has been suppressed. As parents, citizens and advocates for the health of future generations, we must rise up to call attention to this crisis and take action to end it. In nominally democratic societies, which sadly are increasingly corrupted by the power of entrenched interests and economy of influence that surrounds the medical industrial complex, we can most effectively effect change by mobilizing for political action in order to take action against these corrupt forces. It is time to come together to form the Canary Party.

There’s another description as well, but you get the point. It’s a bit much, in my view, but not really out of line with their statements since.

At the time I wrote my previous article, it looked like the revenue to the Canary Party was decreasing. I wrote, “The Canary Party pulled in $72,000 in 2011 and $49,000 in 2012.” (at the time I didn’t know that a large part of the 2011 cash might be from loans). I noted that in 2012 a large fraction of their revenue came from a single donor, one Barry Segal, who apparently has since become disaffected with the Canary Party. I noted:

Per another comment posted to Respectful Insolence, the association between the Canary Party and Mr. Barry Segal appears to be strained. As Mr. Segal accounted for $30,000 of the party’s $49,000 revenue in 2012, one does wonder what 2013 revenue will look like.

Well, from the State of Minnesota site, here is the 2013 financial report on the Canary Party.

The Canary Party took in $17,245 in 2013. Of that, $15,000 was from Mr. Segal on January 2nd. The Canary Party started the year with $15,562.14 and, after $32,300.02 in expenses, ended the year with $687.12 in the bank.

To recap revenue in the last three years:

2011: $72,000 (of which $55,665 may have been in the form of loans)
2012: $49,000
2013: $17,245

Year-end assets

2011: $9,259.07
2012: $15,694.19
2013: $687.12

In other words: revenues and assets are way down. One does wonder how long the Canary Party will last, given these trends.

I find redefining the initial donations as loans to be very interesting. I don’t see evidence that the Canary Party paid back any portion of the loans in 2013. And, given their financial status, I don’t see the possibility of paying back the loans as highly likely. I do have a speculation as to why they might redefine the donations as loans, but I’ll hold off on that for now.

edit to add: here’s the part of the form 990 where they state that they are correcting the original to classify the contributions from the board members as loans.

CP Form 990


By Matt Carey

Meeting of the Interagency Autism Coordinating Committee January 14, 2014

17 Dec

Below is the announcement emailed by OARC (the Office of Autism Research Coordination) announcing the next Interagency Autism Coordinating Committee meeting. The meeting will be held on January 14th. Deadline for submission of comments is January 7th.

Note: I serve as a public member to the IACC but my comments here and everywhere are my own.

Meeting of the Interagency Autism Coordinating Committee
Please join us for an IACC Full Committee meeting that will take place on Tuesday, January 14, 2014 from 8:30 a.m. to 5:00 p.m. ET at the National Institutes of Health, 31 Center Drive, Building 31, C Wing, 6th Floor, Conference Room 6, Bethesda, MD 20892.  Onsite registration will begin at 8:00a.m.

Agenda: The committee will discuss and finalize the 2013 IACC Strategic Plan Update and discuss committee business, agency updates and issues related to autism spectrum disorder (ASD) research and services activities.

Meeting location: National Institutes of Health

31 Center Drive

Building 31, C Wing, 6th Floor, Conference Room 6

Bethesda, MD 20892

Nearest Metro stop:

Medical Center – Red Line

In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus.  All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit.

Pre-Registration:

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Please visit the IACC website for access and information about registering.

Public Comment – Deadlines:

Notification of intent to present oral comments: Tuesday, January 7th by 5:00p.m. ET

Submission of written/electronic statement for oral comments: Wednesday, January 8th by 5:00p.m. ET

Submission of written comments: Wednesday, January 8th by 5:00p.m. ET

Remote Access:

The meeting will be remotely accessible by videocast  (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will only be able to listen to the meeting.

Conference Call Access
USA/Canada Phone Number: 888-769-9402
Access code: 4632869

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least five days prior to the meeting. If you experience any technical problems with the conference call, please e-mail at helpdeskiacc@gmail.com or call the IACC Technical Support Help Line at 415-652-8023.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about prior IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Yes, that $29,800 donation is going to Congressman Issa too

15 Sep

I recently wrote about what appears to be another hearing by the U.S. congress’ Committee on Oversight & Government Reform. If the internet chatter is to be believed, this hearing will be on the National Vaccine Injury Compensation Program. I also noted that internet chatter was pointing to $40,000 in donations made by one Jennifer Larson to the chair of the Oversight Committee. I could find $40,000 in donations from Ms. Larson this year, but I didn’t see the direct connection of the bulk of that amount ($29,800) to Congressman Issa. As I stated in One year and $40,000 later and another hearing:

I found a total of $40,000 donations to Congressman Issa, his PAC and the Republican National Committee though Ms. Larson and her company Vibrant Technologies (click to enlarge):

Larson-OpenSecrets

The bulk went to the Republican National Committee. I’d love to see what, if any, arrangements the RNC has to support Issa with those funds.

Well, I found out about the donation to the Republican National Committee. The Federal Elections Commission shows that that $29,800 donation was earmarked: JFC ATTRIB: DARRELL ISSA VICTORY FUND

larson RNC

Looks to this observer like those funds are going to support Congressman Issa through the “Darrell Issa Victory Fund“.

So we have funds donated to

Invest in a Strong and Secure America ($5,000) Darryll Issa’s political action committee.

Two donations of $2,600 to Darryll Issa directly

and $29,800 to the Republican National Committee, apparently to be used by the Darryll Issa Victory Fund.

As noted by frequent commenter lilady, Congressman Issa appeared at the AutismOne parent convention this year.

By Matt Carey

One year and $40,000 later and another hearing

14 Sep

Last year the U.S. Congress’ Committee on Oversight & Government Reform held a hearing. The buzz on the web was that this prompted by lobbying by people and groups who promote the idea that vaccines have caused the rise in autism diagnoses. In other words, the hearing was supposed to be a hearkening back to the “good old days” when the Committee under Dan Burton held hearings promoting the idea that vaccines cause autism. Instead, the hearing became “1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism“. The hearing originally did not include autistic representation but, after a phone/fax/email campaign, that changed. Ari Ne’eman of the Autistic Self Advocacy Network and Michael John Carley of GRASP were invited to speak. The Committee then were presented with the false dichotomy of “Parents who believe in the vaccine epidemic” vs. “Autistics who don’t and want a focus on improving the lives of autistics”. Also a long session where Members of Congress berated government public health employees.

All in all a waste of my tax dollars, if you ask me.

The people who lobbied for the hearing apparently were not pleased with various aspects of the hearing.

The buzz has been building that another hearing is in the works. We were told that $40,000 had been donated the Political Action Committee (PAC) for the chair of the Oversight committee, Darryl Issa. The original source for that information (Patrick “Tim” Bolen) is far (far, far, far) from reliable. Also, there are limits on campaign donations and it seemed unlikely to me that $40k could be donated to his PAC. But, with the chatter rising on the hearing to the point that people are claiming it is scheduled for November, I thought I’d check.

The donations were reported to have been made from Jennifer Larson, who is with the tiny “Canary Party”. Tax documents indicate that Ms. Larson is a large financial backer of the Canary Party. Searching for what donations Ms. Larson has made (using OpenSecrets.org, the Center for Responsive Politics) I found a total of $40,000 donations to Congressman Issa, his PAC and the Republican National Committee though Ms. Larson and her company Vibrant Technologies (click to enlarge):

Larson-OpenSecrets

The bulk went to the Republican National Committee. I’d love to see what, if any, arrangements the RNC has to support Issa with those funds. If you think that the $10,200 given directly to ISSA and his PAC is not enough to get noticed, keep in mind that this is the 5th highest amount given to the Congressman this year (click to enlarge):

vibrant

Ms. Larson is quoted in a press release:

“We are thrilled that Rep. Darrell Issa will be holding a second round of vaccine hearings this fall in the Committee on Oversight and Government Reform, to examine just what is happening in the VICP,” said Canary Party President Jennifer Larson. “We are eager for Congress and the American people to see just how far the program has strayed from what it was intended to be when Congress put it in place in the 1980s. It has failed families and become nothing more than a tool to protect vaccine makers and cover government malfeasance in the vaccine program, to the detriment of countless children.”

Notice that the first hearing has been redefined. It wan’t about autism. I suspect in her view it never was. And that is sad. Last year’s hearing and the proposed hearing this year are about vaccines.

Last year’s hearing was preceded by donations from Gary Kompothecras (a Florida chiropractor) to Congressman Issa. Mr. Kompothecras was pictured at the hearing. If internet reports are to be believed, it appears that Mr. Kompothecras is part of the groups that split after the hearing last year. He has not donated this year to Congressman Issa or others on the committee. He and his wife did donate last year, about the time that it was reported that Congressman Issa agreed to hold the hearing.

If the buzz is correct, a hearing will be held soon. It won’t be about autism (and, thus, parents can be in the spotlight without sharing it with those inconvenient autistics). But, as we’ve seen, last year’s hearing wasn’t about autism either, right?

Did last year’s hearing have any impact on the lives of autistics? Can I say that my kid will have a better future because of that hearing? No. Absolutely not. Has congressman Issa joined the Congresional Autism Caucus? No. Has he sponsored or supported autism-relevant legislation? No. We have three bills, stalled in committee, one of which is a vaccine-study bill. None have his support.

And this year’s hearing will be even less relevant.

By Matt Carey

Another attempt at legislating an autism-vaccine study

4 Aug

Last week someone forwarded to me an email from the SafeMinds lobbyist. SafeMinds promotes the idea that vaccines, and specifically thimerosal which was formerly in vaccines, caused the rise in autism diagnoses observed in the past decades. The email asked for support for proposed bill in the U.S. House of Representatives, HR 1757.

I am once again saddened that such a vocal minority of the autism communities are focusing their attention on vaccines. Consider that right now there are three bills before congress that come up on a search for “autism”:

Autism Understanding and Training in School Methodologies for Educators Act of 2013
(which is stalled in committee)

H.R. 1757, Vaccine Safety Study Act
(the one that prompted this article, also stalled in committee)

and a Bill introduced just this week (so recent that the text of the bill isn’t online yet)

To establish a health and education grant program related to autism spectrum disorders, and for other purposes.

Three proposed bills on autism, two attempting to improve the lives of autistics and one on vaccines. Surely as a Country, we can do better than this?

Are we hearing a call for support for the other bills from these parent advocate groups promoting autism as vaccine injury? Not that I’ve seen. Are the sponsors of the vaccine bill (Members of Congress Posey and Maloney) cosponsoring the other two bills? No.

As noted, the text of the last bill (health and education grant program) is not up, but the sponsors are Representatives Christopher Smith and Michael Doyle. These are people who were instrumental in getting the Combatting Autism Reauthorization Act passed. These are people with autism on their radar.

By contrast, the main sponsor of the vaccine related bill is not a member of the Congressional Autism Caucus. The cosponsor, Representative Maloney is.

The point I’m trying to make here is this: there are two autism related bills which are not strongly supported by the vaccine-focused parent groups, nor the Members of Congress who are sponsoring the vaccine bill.

Back to the vaccine bill. Bills like this are not new, the bill is similar to ones that have been proposed before:

Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2006
Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2007
Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2009

All were proposed by Member of Congress Maloney. In 2006, the bill had 15 cosponsors. In 2007, 21 cosponsors. In 2009, 9 cosponsors. The present proposed bill has one sponsor (Representative Posey) and 1 cosponsor (Representative Maloney). Support for this bill, while never strong, peaked 6 years ago.

To put this in historical perspective, Robert Kennedy Jr.’s “Deadly Immunity” article (now retracted by Salon.com but still on Rolling Stone) and David Kirby’s “Evidence of Harm” were published in 2005. So it isn’t surprising that the bill enjoyed some support in the early iterations.

Most proposed bills do not get out of committee. The previous incarnations of this bill did not. Fewer bills become law. For example, in her tenure in the House, Member of Congress Maloney appears to have one bill make it to a public law. That bill was a reauthorization of an existing law (changing “dollars and dates”) Some motions by Representative Maloney, such as honoring ex President Clinton have been agreed to by the House.

I already mentioned that Congressman Posey is not cosponsoring the other two autism bills presently before the House. Nor is he a member of the Congressional Autism Caucus. In fact, Representative Posey, the sponsor of the current bill, was not a cosponsor of the 2009 bill, the year he was first elected to Congress. I don’t see him as a cosponsor of CARA. For whatever it is worth, he has received donations from a wealthy Floridian who has worked in the past to get autism vaccine research legislated (Crist backer Gary Kompothecras bullies Florida health officials)

So, with all due respect to Congressman Posey (and a request that he consider a broader support for autism related issues) I’m not seeing H.R. 1757 as an autism focused bill, but a vaccine focused bill. The name says it: H.R. 1757: Vaccine Safety Study Act.

How about the text of the bill? It was rebranded as the “Vaccine Safety Study Act” rather than the previous “Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2009″. It starts with some simple findings:

(1) Securing the health of the Nation’s children is our most important concern as parents and stewards of the Nation’s future.
(2) The Nation’s vaccine program has greatly reduced human suffering from infectious disease by preventing and reducing the outbreak of vaccine-preventable diseases.

I wonder how few people currently calling for support of H.R. 1757 would support a House Resolution making only point 2. I suspect the number is small. Vanishingly small. That before we even add point 4 “(4) Childhood immunizations are an important tool in protecting children from infectious disease.”

Then we get to the proposed findings which are more to the core of the views of those promoting this bill:

(5) The number of immunizations administered to infants, pregnant women, children, teenagers, and adults has grown dramatically over recent years.

(6) The incidence of chronic, unexplained diseases such as autism, learning disabilities, and other neurological disorders appears to have increased dramatically in recent years.

You get both the “scary correlation” and the rather interesting use of the word “dramatically”. We saw a “greatly” reduced human suffering in point 2, not a “dramatically reduced” human suffering.

Here’s another interesting proposed “finding”

(9) Childhood immunizations are the only health interventions that are required by States of all citizens in order to participate in civic society.

Really? Vaccines are “required” for children and then up to the point that you can say “I don’t want to do that to my kid” in 19 states (philosophical exemption) or “it’s against my religion” in 48 states (religious exemption) or “my kid has a doctor’s note saying he/she can’t be vaccinated” (medical exemption) in all states. How much income tax would be collected if the “required” taxes had the same out as vaccines? Also, “childhood immunizations” are required by “all citizens in order to participate in civic society”? Really? So, since I didn’t get, for example, a chickenpox vaccine, the MMR (or, my guess, M, M or R vaccines), or, really most of the childhood vaccines, I am somehow barred from participating in civic society?

Let’s limit this just to kids. What is meant by “civic society”? Unvaccinated children are allowed in schools, they are allowed in public places, they can’t vote (neither can vaccinated kids…they are kids after all). That’s what exemptions mean. What restrictions are there on unvaccinated children that Representative Posey is talking about here?

Let’s go on:

(10) Public confidence in the management of public health can only be maintained if these State government-mandated, mass vaccination programs–

(A) are tested rigorously and in their entirety against all reasonable safety concerns; and

(B) are verified in their entirety to produce superior health outcomes.

Makes us accept a few unsupported assertions. Let me approach it like this: vaccine uptake has remained, on average, high for decades. This without the study proposed in this bill. Evidently, vaccines are tested rigorously and in their entirety against all reasonable safety concerns and are verified in their entirety to produce superior health outcomes. At least as far as the US public is concerned.

Then we get:

“(11) There are numerous United States populations in which a practice of no vaccination is followed and which therefore provide a natural comparison group for comparing total health outcomes.”

If you think one of the “numerous” populations considered are the Amish, you’d be correct. They are mentioned later in the bill. They’ve been mentioned in previous versions of the bill. Even though the Amish do, indeed, vaccinate. There was some very poor journalism promoting the idea that the Amish don’t vaccinate (and that their are no autistic Amish, another incorrect statement).

The bill then goes on the instruct the Secretary of Health and Human Services to initiate a study of health outcomes in vaccinated and unvaccinated populations. The bill proposes dictating how the study will be undertaken. For example, here are the proposed qualifications for the investigator (why only one?):

(c) Qualifications- With respect to each investigator carrying out the study under this section, the Secretary shall ensure that the investigator–

(1) is objective;

(2) is qualified to carry out such study, as evidenced by training experiences and demonstrated skill;

(3) is not currently employed by any Federal, State, or local public health agency;

(4) is not currently a member of a board, committee, or other entity responsible for formulating immunization policy on behalf of any Federal, State, or local public health agency or any component thereof;

(5) has no history of a strong position on the thimerosal or vaccine safety controversy; and

(6) is not currently an employee of, or otherwise directly or indirectly receiving funds from, a pharmaceutical company or the Centers for Disease Control.

OK. From now on when the vaccine/autism groups promote a study supposedly linking autism with vaccines, I’ll ask if said investigator “has no history of a strong position on the thimerosal or vaccine safety controversy”. Many such studies are by individuals or teams with clearly strong views favorable to the autism/vaccine hypothesis. I note that people funded by or members of vaccine/autism groups are not barred from the proposed study. No, just people receiving funds from pharmaceutical companies or the CDC, or public health employees, or people who are on any committee which is interested in vaccines…

Then there’s the “Amish” clause:

(d) Target Populations- The Secretary shall seek to include in the study under this section populations in the United States that have traditionally remained unvaccinated for religious or other reasons, which populations may include Old Order Amish, members of clinical practices (such as the Homefirst practice in Chicago) who choose alternative medical practices, practitioners of anthroposophic lifestyles, and others who have chosen not to be vaccinated.

Why would the named groups be any more valuable to researchers than “…others who have chosen not to be vaccinated”?

It’s a useless clause. It’s worse than useless. One would want to study populations as similar in all respects save vaccination as possible. In their press release SafeMinds stated, ” Every 7th grader knows you cannot do a proper experiment without a rigorous control group that can be compared with the exposed group.” Choosing a group which is specifically different from the study group in areas other than the variable of interest would be, by definition, non rigorous. I’ll leave it to the reader whether every 7th grader would understand that, as some well educated adults do not.

The bill ends with:

(f) Transparency- To facilitate further research by the Secretary or others, the Secretary shall ensure the preservation of all data, including all data sets, collected or used for purposes of the study under this section.

This is essentially the “We want an objective researcher to perform this study but if his/her results go against what we hope for, we want the chance for our own people to work with the same dataset” clause.

One site I saw put the chances of this bill becoming law at 1%. In the email that was forwarded to me one thing I don’t recall being stressed was this. “http://thomas.loc.gov/cgi-bin/bdquery/z?d113:h.r.01757:

Sponsor: Rep Posey, Bill [FL-8] (introduced 4/25/2013) Cosponsors (1)
Latest Major Action: 4/26/2013 Referred to House subcommittee. Status: Referred to the Subcommittee on Health.

Yes. The bill was introduced 3 months ago (4/25/2013) and was referred to a subcommittee (4/26) and has not moved, nor collected additional sponsors in that time. Sure, it’s summer and things move slowly in Washington in the summer. But this has the markings of another failed bill. A waste of efforts. Efforts that could go towards supporting some other legislation, or creating some new bill which has the chance to impact the well being of today’s autistic population. But we aren’t seeing a call to action for that. Nor, I suspect, will we.

edit to add:

What’s missing from HR 1757? In my view, any mention of appropriations. The bill does not mention setting aside any money for this study. Sure, HHS probably can move money around and fund another study. But it makes me wonder whether anyone is serious about this getting out of committee.

The bill is essentially the same as the previous incarnations. The “transparancy” clause is new. Also new is this:

(b) Rule of Construction- Nothing in this Act shall be construed to authorize the conduct or support of any study in which an individual or population is encouraged or incentivized to remain unvaccinated.

Yes, they are making it clear that they are not asking for a prospective double-blind study where one group would be intentionally unvaccinated. I’d love to know how that new clause was inserted. It’s probably the simple reality that such a study is unethical and would make this bill dead on arrival.


By Matt Carey

Financial documents for the Canary Party

12 Jul

There seems to be a large number of groups promoting the idea that vaccines cause autism. A large number of groups who share the same principle members. SafeMinds, the National Autism Association, Generation Rescue and others come to mind. A few years ago, another group was formed, this time as a political party: the Canary Party.

The Canary Party is not a charity, so they do not file form 990′s with the IRS. They appear to not be a national political party a they are not listed with the FEC. Recently, a commenter at the Respecful Insolence blog (Narad)found that the Canary Party is organized in Minnesota and files their financial reports there.

Forms have been filed for 2011 and 2012.

The Canary Party pulled in $72,000 in 2011 and $49,000 in 2012. The major contributors are (assuming I did my sums correctly):

2011:

Jennifer Larson (Canary Party President), $40,665
Mark Blaxill (Canary Party Chairman), $15,000

2012:

Barry Segal (founder of Focus Autism): $30,000
Mark Blaxill (Canary Party Chairman), $10,000

The largest expense is for a “media consultant”, Jennifer Taylor (apparently Ginger Taylor, a blogger).

$36,600 in 2011
$9,000 in 2012

Plus many expenses for advertising and other promotional expenses.

In 2012, travel became a larger expense. For example:

On January 26, 2012, $3,399.79 for expenses with Hyatt/Four-Seasons/Hyatt
(February 2nd 2012 was the date of the “Health Freedom Expo”, where other expenses were incurred)

On February 2, 2012, $1,841.43 for expenses with Hyatt/Ritz

It’s difficult from this to tell how many people were lodged at these hotels for these dates. One expense seems more clear: On 6/15/2012, expenses attributed to Canary Party president Jennifer Larson amounted to $1,541.42 for another Health Freedom Expo hotel stay, this time at the Hilton. Health Freedom Expos are typically 3 day events.

On 10/22/2012 the party hosted a convention, with apparently a tab of $11,382.02 for Hotel/Beverages/Hotel Fees.

Nothing particularly interesting. Per another comment posted to Respectful Insolence, the association between the Canary Party and Mr. Barry Segal appears to be strained. As Mr. Segal accounted for $30,000 of the party’s $49,000 revenue in 2012, one does wonder what 2013 revenue will look like.


Matt Carey

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