Secretary Sebelius came to address the 2012 Inaugural Interagency Autism Coordinating Committee. Over and over again Sebelius has failed to connect with the concerns affecting the 2 million American families affected by autism, and this time was no different. By any stretch of the imagination autism is a national crisis, a national emergency, an epidemic. 1 in 88 American boys have autism. That is an astounding number, a number with tremendously negative implications for the continued success of our country.
More American children have autism than those with all pediatric cancers and HIV combined. So how did Secretary Sebelius and NIH director Dr. Francis Collins describe this epidemic? “Autism is a national health challenge.” “A health challenge?” That sounds like a good thing! Does anyone remember the President’s National Physical Fitness Health Challenge of the 1980s? School aged kids who met minimal Phys Ed requirements earned a “diploma” from President Reagan. I remember proudly hanging my “health challenge” certificate on the wall. It was a “challenge” to do the arm hang for 30 seconds. Autism is not a “challenge,” autism is a national health emergency.
However, what disturbed me more about Sebelius’s speech was its primary focus on the Affordable Care Act, rather than autism. Sebelius talked about how difficult insurance reform has been for the administration, how the Congress is trying to repeal the Affordable HealthCare Act…the subject of children and families suffering with, not just celebrating, autism barely came up! The only stakeholders Sebelius acknowledged were the 4 IACC members with HF Aspergers. None of them even campaigned for the CAA, the act that made IACC possible. Even worse, at least one of Sebelius’ appointees campaigned against the CAA!
I would like to see Secretary Sebelius praising Democratic Congressman Matheson for voting against President Obama’s Affordable Health Care Act. Matheson not only voted against the law but is fighting to repeal it. Matheson brags, “I will vote against the Affordable Health Care Act at every opportunity!” Now imagine Secretary Seblius rewarding the Congressman with a seat on the HHS health insurance committee after publically thanking him for lobbying against the Affordable Health Care Act in the first place.
Secretary Sebelius failed to demonstrate that she understands: a) for many families autism involves tremendous suffering, b) too many people with ASD have disabling medical problems, c) the majority of ASD families want more environmental and less genetic research and d) the CAA was passed and the NIH has money to spend on autism research thanks to the tireless lobbying work of ASD families throughout the country. Easy stuff to understand and validate. Nothing controversial here. It would have cost Secretary Sebelius nothing to acknowledge these points. And it would have been the smart thing for her to do.
Then we heard from NIH Director Dr. Francis Collins. Immediately Collins complained about the paucity of research funds. Listen, we are realists. The autism community is not fighting for more research money; we just want to better utilize the money we have! There is too much waste and redundancy in NIH financed autism research and families want to put an end to it.
Let’s begin by ending the ACE program and use that money for innovative autism treatment research. The Autism Centers for “Excellence” are a disaster. Way too much of the ACE budget goes to overhead. I found all these tricky NIH autism research grants for “special ACE supplementation" or “ACE core supplementation.” Translation: supplementation=bureaucracy. ACE does not adhere to IACC’s Strategic Plan priorities and does almost no environmental or medical treatment research. ACE performs no cutting edge research, in fact almost no research marginally useful to those living with autism. 90% of ACE research involved genes, brain imaging (to the 10th power! Redundancy galore) and early diagnosis. Stakeholders play no role in the running either of ACE centers or in the choosing of the grants or setting research priorities. There is no accountability mechanism at all. ACE is the ultimate autism pork: a giant employment project for university geneticists and psychologists. Let’s end it, now, today, goodbye, good riddance.
Autism parents know a lot more about how to stretch a dollar than the NIH. Parents from SafeMinds, the NAA or Generation Rescue would squeeze 100x the value out of ACE money and actually help people living with autism in the process. Dr. Collins, I urge you to get these organizations involved in NIH autism research and I promise you that we will see transformative progress.
Dr. Collins did display an understanding of the need for treatment research and the failure of the NIH to make progress in this area. However, Collins went on to point out what he considered some modest NIH funded research successes. Yes, the usual learn the signs campaigns (we learned the signs now what?), better diagnosing and the obese Moms cause autism research! I remember sitting there thinking, “no he did not just say that.” The “fat moms cause autism” research has been thoroughly ridiculed by families and scientists alike. The fat moms study is a perfect example of inane and wasteful autism research. Let’s be serious and do some real environmental research instead of Mom blaming nonsense.
I mean this is autism 101. Autism is strongly linked to inflammation. Obesity = inflammation. It isn’t healthy for ANY Moms to be obese while pregnant. OK, now let’s actually learn something new.
Congressmen Chris Smith and Congressman Michael Doyle showed Secretary Sebelius how it is done; how to address autism as the national health emergency it is. The congressmen came to IACC and gave heartfelt speeches about what autism means to their constituents and why we need answers. Doyle and Smith spoke with a real sense of urgency and actually talked about the need to prevent autism. Smith recounted New Jersey’s history of environmental contamination and how hard NJ families worked to get the CDC to research the giant autism hotspot in Brick Township. Smith discussed foot-dragging at the CDC and why consumer advocacy is essential. Smith and Doyle spoke about how difficult it was passing the CAA and how essential our grass roots campaigns were.
Congressman Doyle spoke about the need for bipartisanship. Autism is not a republican or democratic issue. It is about serving the constituents. No re election speeches here- it was all about autism.
Finally Michael Strautmanis spoke. Mr. Strautmanis is a special counselor to the President. Strautmanis spoke movingly about his own experience with his ASD teenage son and the struggle to maintain safety in the home. It was a poignant speech from a loving father and compassionate man. However, it was a speech we had heard before. Mr. Strautmanis is not interested in autism research. Listen, my husband isn’t either, that’s fine. However, we desperately need someone in the White House or the HHS who closely follows the autism research and can hold the NIH accountable for progress. We cannot continue from this place of research stagnation, with the same people in charge, doing the same things the same way, investing in the same lackluster research and failing our families.
I appreciate Mr. Strautmanis’ empathy very much. However, we don’t need him making apologies for our families because we are fed up with the NIH’s failure. Strautmanis told the committee that he understands that it must be hard to hear all the criticism about their actions regarding the state of autism research. He asked them to hear these concerns as they remember ASD parents haven’t had a good night sleep in a while. Gosh, isn’t that like saying don’t listen to no-nonsense breast cancer advocates because they are probably menstruating? I think Mr. Strautmanis meant well, trying to make the committee understand the tremendous challenges our families face. However, what about the research? Where are the calls for change, excellence or real consumer representation when it comes down to actually choosing the grants? What is he going to do about the fact only 5% of ASD research money studies environmental factors or the fact that less than 1% of ASD research money studies medical interventions? I don’t have the power to fix that Mr. Strautmanis, but you do.
Despite what the CDC and the NIH may believe we cannot early-diagnose and “learn-the-signs” our way out of this epidemic. The NIH needs to send out RFAs on environmental science, medical treatment and yes, vaccine/regression research. This NIH passive “I’ll fund the research I like” no matter how unimportant, redundant or dumb (fat moms) behavior has to end.
Katie Wright is a Contributing Editor.