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Kathleen Sebelius Excludes Autism Biomedical Community from IACC

Split table By Katie Wright

I learned a lot at the first full IACC meeting of 2010. When Secretary Sebelius asked each member to introduce themselves and say something about their role on the committee I saw public members in person who I did not know existed! I also learned where some of these previously silent and or invisible public members work and the specific role they play.

As the introductions went around the room the federal members dutifully gave their name, rank and serial number. There was little enthusiasm or talk of any personal connection to autism nor a sense of urgency. The federal part of the panel looked like “Day of the Living Dead.” Is serving on IACC a punishment? Can’t Secretary Sebelius set these federal workers free? Why not parole them early and get more public members in those seats?

The new public members were noticeably more engaged. Marjorie Salomon, PhD spoke animatedly about her work with high functioning individuals on the spectrum.  However, Dr. Salomon does not represent an autism organization nor was she nominated for membership in any of the public feedback. Ari Ne’man introduced himself as the founder of The Autism Self Advocacy Organization serving those with autism HF autism and Asperger's. Geri Dawson, PhD gave a nice overview of AS science and the needs of  addressing  all the needs of those on the spectrum. Dr. Fischbach of the Simons Institute spoke of the depth of Simons’ genetic research. Finally, Denise Resnick of  SARCC, co founder of an Arizona services and behavioral intervention provider and mom to an affected young adult was absent but on the phone.

I just don’t understand the criteria for public membership. Doesn’t public membership mean someone who represents the public? Dr. Janvier and Ms. Christine McKee represent no community, no constituency at all. Why were they chosen? Dr. Janvier doesn’t even believe autistic children have GI problems or any kind of chronic illnesses. And what about that bizarre basement based “Science Foundation” that gives out no budgetary or family membership information? Conversely, TACA and NAA represent 25,000 parents of children with autism (including doctors of affected children!), fund biomedical and environmental research as well as provide families with an enormous range of services. However, TACA and NAA have no voice on IACC. The research recommendations IACC makes are too important to chose names at random and call them “public members.” The entirety of the autism community deserves to have their voices heard.

A few months ago I wrote to Dr. Collins asking him to meet with Autism Speaks and the National Autism Association regarding our frustration over the issue of the public seats. Dr. Collins graciously responded and decided to hold a meeting with community advocates. Dr. Fischbach, Ari Ne'eman, Dr, Geri Dawson, Denise Resnick (on the phone) as well as Wendy Fournier of NAA and Becky Estepp representing TACA, my parents , Bob and Suzanne Wright as well as myself were all in attendance.  Wendy, Becky and I were the only autism Moms in the room with severely and medically affected children. We were also the only members of the biomedical community.

Largely as a result of that meeting, almost every single person in the room (and even one on the phone!) was appointed to IACC, EXCEPT long time autism community leaders/ advocates Wendy and Becky.



Instead, Secretary Sebelius opted to appoint 2 MORE representatives of the High Functioning ASD community, a representative of the genetics only research center, Dr. Dawson (who reclaimed Autism Speaks’ seat), and Denise Resnick of SARCC, Mom and co founder of SARCC.

My intention is not to argue for the removal anyone from IACC, only to illustrate why the deliberate exclusion of the NAA and TACA is so egregious. Our severely affected and medically affected children are already so poorly represented. Only ONE, out of 20, IACC members has any significant experience with biomedical research and treatment issues affecting our children. Most of the federal members’ main interest is early diagnosis. That is the easy part! 95% of the work comes after the diagnosis. Our kids need better services, more therapists, medical help, schools and more intervention research. 

It is now estimated that approximately 40% of children regress into autism, and that % has been increasing at an alarming rate. Linda Birbaum informed IACC about an ongoing study that found that 50% of parents report seeing a definite regression into autism. Last week’s ATN study found that 50% of ASD children have serious GI problems, that % is even higher among regressive kids.  Our children are mainly nonverbal and cannot participate on IACC like Ari Ne'eman or Stephen Shore. IACC has three public members specializing in advocating for the needs of high functioning community, but only one for the severely and medically affected autistic children. Considering the fact that severely affected and regressive children are often living in pain and have the absolute worst long term prognosis, the omission of Wendy and Becky is indefensible.

Ms. Denise Resnick  is an accomplished professional in advocacy, awareness, public/private collaborations and adult services. Denise should have been chosen as chairperson of the services committee. She excels at everything having to do with adult services, advocacy and awareness.  Ms. Resnick is an amazing parent of an affected young man. However, her main focus is not environmental research, regression, GI disease or biomedical research and treatment.  Those are the issues Wendy and Becky represent.

The commitment required to be on IACC is intense. It is beyond tough to make every meeting, but you need to be there or say no thanks. Unfortunately, Ms. Resnick was unable to take her seat, as the parent rep., for the Strategic Plan subcommittee meetings.  Nor could she attend the NIH community meeting or the first IACC meeting.

Frankly I do not understand why Secretary Sebelius heaped such praise on the committee. Has she even read the public feedback?  This committee took 2 years to make a strategic plan! I wish Sebelius had instead compelled IACC to operate with a sense of urgency, compassion and openness to new ideas. I really wish Sebelius had appointed a researcher in environmental science and autism to IACC! I suggested everyone from Dr. Isaac Pessah to Dr. Martha Herbert, exquisitely qualified candidates. IACC desperately needs environmental expertise, not more psychiatrists. I have to wonder why Dr. Insel did not suggest this. It is apparent from the choices she made, and did not make, that Secretary Sebelius relies on Insel’s input. Last month Insel gave an interview with David Kirby in which he stressed his belief in the importance of investigating environmental factors, how critical such research is, why we need to conduct more… But it seems such words rarely translate into actions.

Secretary Sebelius and Dr. Collins made some very nice remarks at the beginning of the meeting. I believe they really care about this issue and want to see our children make progress. Dr. Collins especially acknowledged our families’ impatience and the gravity of autism. Both Sebelius and Collins spoke with great optimism about recent Fragile X research, how it is being undertaken, results thusfar. Dr. Insel even started the meeting talking about the “exciting breakthrough in the NYT.” Insel was beyond thrilled. Families in the autism community aren’t holding our breath. While Gardiner Harris, the NYT reporter, waxed ecstatically about Fragile X drugs (as he always does), the actual Fragile X researcher, almost comically, tried to talk Gardiner down saying the trial was only on adults, only 50% showed improvement and that it will be many, many years before they conduct a trial on children. 

The researcher seemed to be pleading with Harris to lower his expectations. Meanwhile so many of us with environmentally affected children, whose disease has virtually nothing in common with Fragile X, need help now. So much vitally important short term research is not getting funded because our children barely have a voice on this committee.
During the public input session, no one talked about Fragile X.  Jim Moody was asked to read a statement by NAA Board Chairperson Lori McIiwain. Lori wrote about the need to immediately address the horrible spate of recent child deaths. At least a dozen ASD children have died over the past month. These children had good parents. Many ASD children are highly curious, hyperactive and have no awareness of danger, it is impossible for any one human being to watch such a child every second of the day and night. Almost every day the news reports on yet another horrible story about an autistic child wandering off in the span of a minute, only to be found dead days later. Lori’s words broke my heart as she explained that many of the lost children are nonverbal and cannot respond when they hear rescuers calling their name.

These children die alone and terrified.

Certainly all IACC members are deeply disturbed by these deaths, but it was at the top of the agenda for the NAA and Lori McIiwain, leader in the biomedical community and parent of a severely affected, nonverbal boy.

1) Dr. Yvette Janvier- A  mysterious “public member.” Doesn’t public membership imply that you represent the public? As one of the few physicians on the committee, Dr. Janvier’s main interest is not the pervasive and severe psychical illnesses affecting autistic children but early intervention, an issue already well covered by the 4 psychologists on the committee.

2)Dr. Walter Kornshetz of NINS, is interested in how the brain works. No sense of urgency or enthusiasm.

3)Dr. Marjorie Salomon- spoke with energy and excitement about her research high functioning autism. Public Member

4) Alison Singer- President of an autism science organization focused on genetic and behavioral research, no information on membership or budget.

2) Dr. James Battey of the Institute for Deafness- genetic background. Dr Battey believes autism is primarily a communication disorder. That maybe is true of the highest functioning ASD individuals but for most individuals autism is so much more complicated.

3) Dr. Gayle Poole. I thought she was a new member because I cannot recall ever seeing her at a meeting! So imagine my surprise when. Dr. Poole said she is a founding member! Her main interest is early intervention.

4) Dr. Geri Dawson, Autism Speaks- Dr. Dawson gave a good overview of the heterogeneity of the spectrum and the service and research that are urgently needed.

5) Dr. Ed Trevathan-CDC, main interest is early intervention. Also studies prevalence.

6) Dr. Stephen Shore- HF autism/ Asperegers community. Shore gave an elegant speech about the importance of ASD individuals leading lives of purpose and dignity.

10)Dr. Henry Claypool- services and support for families.

11) Susan Daniels- I had never heard the sound of her voice before!  It is good to put a face on a name. Ms. Daniels spoke with zero enthusiasm about coordinating autism research.

12) Dr. Van Dyke- spoke quietly in a monotone about serving mothers and children.

13) Dr. Sharon Lewis- another new face! Dr. Lewis coordinates services and support at the HHS.

14) Dr. Larke Huang- yet another mystery voice heard from! Dr. Huang represents Dept of Substance Abuse. Still unclear what this has to do with autism. No enthusiasm.

15) Dr. Cindy Lawlor- National Environmental Health Department. Dr. Lawlor has not been strong advocate for environmental research on this committee. I don’t think I have ever heard her say the words “heavy metals” yet Lawlor claimed that is one of her main areas of interest?

16) Dr. Guttmacher- Eunice Kennedy Shriver Institute- I learned a lot about the Shriver Institute but nothing about what makes the issue important to him.

17) Lee Grossman, President of Autism Society. Public Member.

18) Christine McKee- parent of affected daughter. Represents no constituency.

19) Lyn Redwood- co Founder of Safe Minds- only Redwood spoke at length about autistic regression and environmental triggers. Ms. Redwood cited new environmental research and important questions raised that need to be addressed with a sense of urgency.

20) Ari Ne'eman- President of Autistic Self Advocacy Network.  Serving high functioning autism community. Public Member.

21) Ellen Blackwell- Medicade Services. Mom of young man with autism. Main interest is Adult Services.

22) Denise Resnick

I am going through hell watching this committee! That is why I won’t stop until decent representation is achieved.

Kareem Dale said it is the White House’s goal that the issue of autism gets the highest level of attention. The attention IACC receives is only going to get more intense given the distressing nature of public appointments.

Comments

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With all my heart, thanks Katie

We need to know that the IACC keeps the focus on the children - who need help NOW.

IACC should definitely included TACA and/or NAA!

Also, why not a mitochondrial/metabolic/immune focus?
Brain dysfunction - biologically based and need differing treatments -

Let's get going please.

AL

The IACC meetings should have "Shhhh, Craftsman Convention in Progress" on the outside of the door. It's a room full of tools, save one or two. The first and last meeting I listened to made me feel like that kid in Ben Stein's class, drooling on the desk in Ferris Bueller's Day Off. The government is just patronizing a... cause that they have little to no concern for in a feeble attempt to keep a vocal minority quiet. They know damn well where autism comes from. However they don't call it an "epidemic"................ they call it "collateral damage".

Amy Rhodes

It just goes to show that the "federal representatives" won't wake up until it happens to one of their children/ grandchildren. I pray that these morons never "get" to experience autism on that level, but if that's what it takes...

Anne

Thank you Katie! I am so disgusted with the IACC BS! I agree with those calling for an organised letter writing campaign to an independent oversight committee. Maybe if they hear from enough of us, they will finally look into this travesty. The government will NEVER do the proper studies, because they don't want documented proof of harm. How else could they go on with thier tired argument that "evidence to date shows no connection..."

Amber

I get so tired of this attitude, in this case, the members of the IACC.

Everyone knows autism sucks (except the ari neemans-so let's put them on the panel!), so set up some foundation, govt entity or some other such thing that LOOKS good, "We are doing SO much to help!" It makes everyone feel so good, doesn't it? That K Sebeilius, what a gem, she does so much. The only problem is nothing gets done, except a lot of money wasted and time lost, the war against cancer anyone? We are about to step into the same fate with autism. Good Lord, help us.

Theresa O

spacekitty, you're right. There is a forum for this. It's the Office of the Inspector General (OIG), part of the Commerce Department: "OIG is an independent, nonpartisan agency committed to protecting the integrity of the more than 300 programs administered by HHS. OIG’s mandate is to protect the integrity of the programs of HHS, as well as the health and welfare of the beneficiaries of those programs." (http://www.hhs.gov/asl/testify/2009/06/t20090625a.html)

Here is the online hotline URL: http://www.oig.doc.gov/oig/hotline/000016.html

Veronica

I attended the meeting for the first time. I am a parent of a 6 year old non-verbal son with Autism. I do have to say I did see that the committee is geared toward the higher functioning. However, I was highly encouraged by the presentation of the non-verbal workshop at Boston University and the forth coming paper on their findings.

spacekitty

There must be a way to sue Selibus for negligence. All people in charge of autism who don't look at recovered and recovering children are negligent. Ignoring that they are there should be a crime. Surely there is some legal forum for this.

JenB

Thank you, Katie, for your efforts to attend and keep us aware of the "actions?" of the IACC.

It may be nearly pointless to continue to "coordinate" with them. I believe the biomedical community will do more for preventing injury and healing and assisting those on the spectrum without the IACC's help than with it.

Teresa Conrick

Thanks, Katie for your thoughts and feelings about a very important issue.

I just want to point out the part about Gardiner Harris- you wrote:

"While Gardiner Harris, the NYT reporter, waxed ecstatically about Fragile X drugs (as he always does), the actual Fragile X researcher, almost comically, tried to talk Gardiner down saying the trial was only on adults, only 50% showed improvement and that it will be many, many years before they conduct a trial on children."

..and some may have missed Gardiner's article in the NYT so I felt we needed to show that, here, as it was an insulting infomercial for genetic and Phrma influence and money, including the circa 1950's title:

"Promise Seen in Drug for Retardation Syndrome"

http://www.nytimes.com/2010/04/30/health/research/30fragile.html?hpw

michael framson

Following on Allison MacNeil's great comment/suggestion: I think it would be a step in the right direction for AoA,Katie Wright to lead, in the development of a Strategic Plan(SP)that addresses the areas which are currently unrepresented, unresearched, or inadequately addressed(by the IACC), but urgently needed.

Katie, it is so clear how empty and hollow the IACC is. They really have no skin in this effort except their own.

A solid working SP, spelled out in black in white signed by all those who understand what's not happening.

We really have more potential than we exercise.

Sarah

I think we have more power than we realize... what do we care what the IACC
thinks?

The IACC and Sebeliius can carry on the charade pretending they care about the autism crisis but our power exist through social networking..it's very effective.

Sebllius must have been pissed about the
$8 billion H1N1 vaccine campaign FLOP... which tells me the masses are waking up and not buying the hype and not listening to these empty suits anymore.

People are starting to take charge of their own health care decisions and not entrust it to these lunatics. The trust in gov't, particularly when it comes to health care, is at an all time low and it's their own damn fault.

Next time they throw another Pandemic and noone gives a rats a--, maybe they'll get the message.

Jan Randall

Katie I read this with an ever increasing sense of disgust. What the hell is going on here?
I watched my son regress into Autism at the age of 20 months, in 1987. Over the last 23 years I have watched him struggle and done my damnedest to help him make progress, to help him feel well and educate those around us at every opportunity.
I am beyond sad that with all of the knowledge and all of the families suffering today, the people in power, the ones could make real change, are still seemly sitting on their hands.
It is always up to us, the tired overwhelmed and ever more stressed out parents to push, and yell and nag, so that something, eventually, will done.

cmo

The basic goal of the IACC is to keep "Autism a mystery" at least 20 years longer than the tobacco/ lung cancer mystery.

debbie voss

I am just sick right now...........nobody cares.....now I am just depressed. What a bunch of **&^%$# bullshit! Thank you Katie for being able to report this.......

rileysmom

Along with stomping on the First Amendment Rights of parents with vaccine injured children, Kathleen Sebelius takes it upon herself to hand pick the board for IACC. This is the transparency in government that Obama was talking about?
Thanks again Katie. Your hard work is appreciated greatly.

Bob Moffitt

Katie .. I thank you for keeping us informed of the IACC's continuing failure to address, with any sense of urgency, nor any sense of purpose .. what has happened and continues to happen .. to children who are not at the higher end of the autism spectrum.

We are lost if we must rely upon the IACC .. so .. how about organizating a letter writing campaign to elected representatives occupying influential seats on various Senate and Congressional committees .. demanding public hearings to assess performance of the IACC:

What have they accomplished .. What have they failed to accomplish.

Isn't that what "oversight" is supposed to mean? Shouldn't HHS Sec Selbeius be called before Congress periodically .. so she can be given the opportunity to publicly explain her decisions on "who" serves on IACC .. "what" credentials they should have?

From what I have been reading in the media .. every encumbent up for re-election this year has reason to worry. Now might be the perfect time to exercise a little pressure on these people.

Anne McElroy Dachel

It's with a deep sigh that I finished reading this latest news the IACC. Autism is a national emergency consuming our children like nothing else before, but the IACC is still working on the seating arrangement. I too am disappointed that so much emphasis is placed on HF kids. It's not disturbing to see a three year old interacting with a therapist, but it's another thing entirely to watch a video of a non-verbal 18 year old young man banging his head on the table.

The IACC seems intent on continuing to delude the public that autism really isn't anything to worry about. We have all the time in the world to act bemused. This is the most sinister deception of all. Despite the hoopla from the IACC, they have done nothing for children with autism. I'm sure few parents are even aware of their existence. Meanwhile, the numbers reaching adulthood continue to grow. I can't wait to see how the IACC tries to deal with the disaster when one percent of adults, as well as children are autistic.

Anne Dachel
Media


htbenz

Katie:

Priceless comment....

The federal part of the panel looked like “Day of the Living Dead.”

Tanners Dad

@Aneeman I am now the President of #APAN #Autism Parents Advocacy Network Can I Join the #IACC Where is Biomeds Representation #AutismOne TannersDad Tim

Mary

Katie,
Which Dr. Van Dyke is this? Is it Dr. Kyle Van Dyke, the DAN! dr.?

Nick

Could it be that there is a certain type of mindset that feels sympathy towards disadvantaged people, but ultimately likes the idea of a class that is dependent on them?

Would this be manifested in an attitude that no cure is urgent and therapies must be ordained through those with this attitude? This would leave most of those they "treat" dependent, albeit often more capable.

Alison MacNeil

Chinese proverb: "Talk doesn't cook rice",

That sums up my feelings about the inertia going on at the IACC. I'm so bone weary tired of hearing about Early Intervention and Early Diagnosis.

I think many of you would say, that's the point; keep the dog chasing it's tail, no real work will get done, spend down the clock on a few people's careers (Insel), let them exit gracefully before the shit hits the fan.

I'm so naive in saying this but I'll say it anyway. If you kept Lynn Redwood, scrapped the rest of the group, stripped Insel of his leadership and right to participate, and then filled the committee with 20, AofA frequent commentators, in three weeks there would be a strategic plan in place, vax vs non-vax studies moving forward, and a total sense of urgency fully replacing the existing inertia. That urgency fueled by the passion of heartbroken parents.

If I ran the IACC I would sequester the committee like a jury. No one leaves the room until we get this thing figured out.

AutismComic

Katie,
What can we do to change this? As always, I'm ready to get naked in the reflecting pool for the cause. This is a great analysis, thanks!

dan olmsted

Katie -- thank you so much for your continued documenting of what a ball looks like as it's actually being dropped. -- dan

Maurine Meleck

Kudos to you Katie, for having to watch this charade march on. I think I would have pulled all my hair out by now. Thanks a million times over for all your efforts on behalf of our children.
Maurine

Heather White

I feel your frustration in this post and understand it well. Most people enjoy the status quo. I did before my son's injury. To suggest there is an environmental factor and the benefit of chelation points the needle directly to vaccines. This rocks the very foundation these people stand on. Takes them from their confront zone.

I've been a pessimist for a long time regarding enlighten research that would benefit my baby. But now I feel the tide is beginning to turn. Corruption is easily seen these days regarding the FDA, CDC and Pharma. Even-though the media is not reporting it, the word is out on the web.

Thank you for holding their nose to the grindstone and keeping us informed.

Tanners Dad

I was disturbed by Kathleen Sebelius's Joke about the number of people who were fighting to get on the committee. How can Parents take her seriously in that setting when she asks media to downplay our voices, Spends her entire time thanking & Getting thanks, and had the least to say during Autism Awareness month than any of her lame predecessors TannersDad Tim ( Great Review as always thank you Katie... See you at Autism One! )

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