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Kathleen Sebelius Excludes Autism Biomedical Community from IACC

Posted May 15 2010 12:00am

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.

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