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Autism Coalition Takes Secretary Sebelius to Task for Autism Epidemic Inaction

Posted May 01 2012 12:00am

Sebelius pink jacket Barry Segal is Founder and Chairman of Focus Autism , a new charity dedicated to finding answers about autism causation. He founded Bradco Supply, one of the nation’s largest distributors of building materials. The Wall Street Journal recently wrote about Barry’s philanthropy in Sub-Saharan Africa. Last month he wrote a pointed letter from a coalition of autism organizations requesting specific actions of Secretary of Health and Human Services Kathleen Sebelius, whose agency has ignored the urgent issues surrounding the autism epidemic. He received a verbose but insufficient response from Francis Collins , not from the Secretary herself. He responded to the Secretary inquiring about her lack of personal attention to the topic in a letter dated May 14, 2012.

April 4, 2012

Secretary Kathleen Sebelius
U.S. Department of Health and Human Services
200 Independence Ave., S.W.
Washington, D.C. 20201

Dear Secretary Sebelius:

I am writing to you on behalf of a coalition of autism advocacy organizations representing more than 100,000 people. We held a press conference on April 2, World Autism Day, in New York City to respond to the alarming new autism prevalence rate of 1 in 88 children and 1 in 54 boys born in 2000. Here is a link to the video for the live press conference: . Autism is a national health emergency and we believe that HHS should treat it like one. We are deeply dismayed by the federal government’s failure to appreciate this crisis and to respond effectively. We seek the following:

1. That you, Secretary Sebelius, fire those who have been in charge of autism policies in this Administration, including Dr. Insel, chair of IACC. The new members of IACC should all be dismissed, and the new Chair of IACC should commence a new search for committee members.

2. That you, Secretary Sebelius, meet with a group of representatives from this coalition to discuss the autism health emergency. We do not sense that you understand the urgency of this situation.

3. That you and your Administration clearly understand that the federal government’s policies on autism are a Presidential campaign issue. What is more important than the cognitive health of our children? President Obama called himself “the Autism President” in 2008 on the campaign trail and said that he would help to solve the crisis. He will stand on his record. Please recognize that this is an issue that the autism community will vote on.

4. That the General Accounting Office study past autism funding to see why almost all money went to genetic research, which we now know, based on peer-reviewed science, is not the predominant factor – the environment is. We want to understand if corporate interests or other improper interests distorted research priorities.

5. That the Government Reform and Oversight Committee of the U.S. House of Representatives hold hearings in the near future on the role of federal authorities in this crisis. No Congressional committee has looked seriously at the conflicts of interest in federal activity on autism in almost ten years. As part of this process, Congress must examine the Vaccine Injury Compensation Program and how it has been quietly acknowledging autism as a vaccine injury for almost 25 years. We need real inquiry by Congress into this debacle.

The grassroots organizations in the coalition include the Age of Autism, AutismOne, Autism Action Network, The Canary Party, Center for Personal Rights, The Coalition for Safe Minds, Elizabeth Birt Center for Autism Law and Advocacy, and Focus Autism.

Please know that the vast majority of members in these organizations are parents of children with autism. The members of the coalition will not abandon this issue. We cannot. We live with autism every day. We will not stop pushing until we get accountable leadership and until we reverse this devastating epidemic.

I eagerly await your response and will share it immediately with all members of the coalition.
Sincerely yours,

Barry Segal,
Founder and Chairman,
Focus Autism Foundation

on behalf of grassroots autism coalition
Cc: Kim Stagliano, Age of Autism
Ed Arranga, AutismOne
John Gilmore, Autism Action Network
Ginger Taylor, The Canary Party
Louise Kuo Habakus, Center for Personal Rights
Eric Uram, the Coalition for Safe Minds
Mary Holland, EBCALA


Here is the response from HHS's Francis Collins (click to enlarge)


Francis Collins to Segal 5-9-12 (1) Francis Collins to Segal 5-9-12 (2)

Below is Segal's terse response to Secretary Sebeliusm which crossed in the mail with the letter from Collins. If you can't read the photo well it says,  "I'm surprised that I didn't receive a response from you with my first letter. Per the attached,  I see where you're trying to purposely neutralize the press so the truth doesn't come out. Something is rotten in Denmark." 

[The "attached" included an excerpt from Vaccine Epidemic that referenced an interview in Reader's Digest where Secretary Sebelius said that she asked the media to not cover those individuals critical of vaccine safety. Specifically, in March, 2010, Sebelius told interviewer Arthur Allen, “There are groups out there that insist that vaccines are responsible for a variety of problems despite all scientific evidence to the contrary. We have reached out to media outlets to try to get them to not give the views of these people equal weight in their reporting to what science has shown and continues to show about the safety of vaccines.”]

Seagal to Sebelius 5-14-12 (1)

 Stay tuned for more.

Posted by Age of Autism at May 24, 2012 at 5:46 AM Permalink

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