Fwd: Update on the Combating Autism Act of 2006

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Update on the Combating Autism Act of 2006

Last Thursday, August 3, the Combating Autism Act was passed in the Senate. Since this time, NAA has discussed and analyzed the bill with others in our community, giving special attention to the accompanying legislative history. We believe the CAA will make a positive difference for our children, and is worthy of our watchful support.

The significant funding for environmental research, the first acknowledgement by the federal government that environmental factors are related to the epidemic of neurological disorders among our children, is the most promising aspect of this legislation. Through the CAA legislative history, the $45 million designated for environmental research is now more clearly directed where we need it most: the impact of environmental factors upon our kids, including the risks posed by vaccines and thimerosal.

From the beginning of this process, there were three critical areas that we believed should benefit from this legislation:

- FUNDING FOR ENVIRONMENTAL RESEARCH

- TREATMENT

- GREATER RESEARCH OVERSIGHT FROM THE COMMUNITY

In pursuit of the best provisions possible to address these areas, we offered several suggestions to maximize the report language and colloquy to the HELP committee. These were addressed as follows:

1. Our unwavering request that as much money as possible be channeled into biomedical research for our children that will directly impact their lives through treatments.

The Combating Autism Act will:

Provide $500 million to the NIH over 5 years

Provide $195 million to the Autism Centers of Excellence over 5 years

Fund basic and clinical research in developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, neurobehavioral development, endocrinology, gastroenterology, psychopharmacology or toxicology

Support continued investigations into causation, diagnosis, early detection, prevention, control, intervention and cure

Authorize $45 million to the National Institutes of Environmental Health over 5 years for clinical research of environmental factors

2. Our request for autism community oversight of NIH research including an Autism Advisory board and more membership from the community on the NIH Autism Interagency Coordinating Committee. The report language accompanying the Bill provides:

IACC recommendations to the Secretary regarding public input in research decisions

IACC may recommend an Autism Advisory Board for additional public participation

The Secretary may independently provide an Autism Advisory Board

3. The need to have “Rule-out” clarified, used in the bill several times and creating confusion regarding intent.

Report language accompanying the Bill clarified that the phrase “rule out” is used only as paired with “diagnosis” to

“distinguish between the particular disorder and other potential issues, hence, the need to pair ‘diagnosis’ with ‘rule out.’” It does not apply to determining best treatment practices.

4. Concerns that Environmental Research Centers would be consolidated within other centers.

Report language accompanying the Bill gives the NIH authority to consolidate program activities when necessary for efficiency, but to retain a separate, distinct focus on environmental health factors.

5. The need to clarify definition of " Intervention " which could be interpreted as applying only to non-medical therapies such as Applied Behavior Analysis.

Report language accompanying the Bill clarified that the term “encompasses a broad range of activities, including biomedical interventions (such as pharmaceuticals), behavioral interventions and therapies.

6. The need for a definition of " diagnosis, " " comprehensive medical care, " and " evidence based. "

Beyond the potential diagnosis of autism, co-occurring conditions and other health aspects are to be considered. These aspects include developmental, psychosocial, behavioral, nutritional, neurological, immunological,

endocrinological, gastrointestinal, metabolic, and toxicological parameters.

Comprehensive medical care " should include diagnosis and evaluation of disabilities identified during a complete history and physical examination and through appropriate laboratory evaluations.”

" Evidence based " is stated to be the " conscientious, explicit, and judicious use of current best evidence in making decisions about care and services for individuals. The practice of evidence-based care and services means integrating individual expertise with the best available external evidence from systematic research. "

Clearly defining these areas provides assurance that evaluations and treatments will be based on thorough physical examinations and biomedical interventions such as chelation therapy.

7. Broaden colloquy (floor statement to accompany the Bill) to include vaccines, not just thimerosal.

The colloquy specifies areas of research to include “biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder.”

The last paragraph of the colloquy states that all biomedical research areas can be pursued including “environmental research examining potential links between vaccines, vaccine components and ASD.”

The coming weeks and months provide a critical time frame for successful passage of the CAA. Here are the next steps in the process, and what you can do to help:

With the bill now headed to the House, visit with your Congressman while back in your district during August recess, when legislators vacate Washington for the month. Add this to the list of legislative support requests as outlined in NAA’s Put a Face on Autism campaign. Learn more here:

www.putafaceonautism.org

Be prepared to follow-up with phone calls and faxes when Congress reconvenes in September.

If passed in the House, the CAA will then be sent to Appropriations. We’ll need to stay closely involved to ensure that funding is provided as specified in the bill.

The progression of the Combating Autism Act has transpired in what we believe are unprecedented challenges to those of us that support the vaccine/autism connection. Its passage in the Senate is a milestone, but just one step of many to get the money our children deserve for research. NAA will work to pass the CAA in the House and if passed, work with appropriations to get the funding as outlined in the bill.

From the early stages of the bill through today, we believe that the interests of our vaccine-injured children are best served when we remain engaged in the process with influential Congressional staff to fight for the very best research, treatments, and services this legislation can provide.

The NAA Team

Resources:

Combating Autism Act of 2006:

http://www.nationalautismassociation.org/pdf/CAA.pdf

CAA Colloquy:

http://www.nationalautismassociation.org/pdf/CAAColloquy.pdf

CAA Report Language:

http://www.nationalautismassociation.org/pdf/CAAReport.pdf

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