NAA and co. Write to Barton About CAA

Update on the Combating Autism Act – November 30, 2006

The following letter has been sent to Chairman Barton in an effort to reiterate the need for the mandate of specific environmental research in the Combating Autism Act.

November 29, 2006

The Honorable Joe Barton
2109 Rayburn House Office Building
Washington, D.C. 20515-4306

Re: Combating Autism Act: New Study Supports the Need for Urgent Action.

Dear Chairman Barton,

Thank you for your ongoing efforts to complete work on the Combating Autism Act before the end of the current session. Attached please find a pre-publication release from a group at University of Texas Southwestern Medical Center that supports the urgent need for a significant increase in funding for research on the role of environmental factors (including vaccines) in causing autism spectrum disorder (ASD): “Evidence of Toxicity, Oxidative Stress, and Neuronal Insult in Autism” (Journal of Toxicology and Environmental Health, Part B, 9:985-999 (2006)).

We ask that your bill include (1) a specific authorization to NIEHS (leaving centers a matter of discretion); (2) the Autism Advisory Board (to provide a more hands-on tool for community and researcher feedback and recommendations to ensure the most useful and strategic research), and (3) a subject matter mandate that research topics specifically include vaccines, other biologics, and their preservatives. These latter two items were addressed in the Senate report and colloquy but are of such importance that they should be included in the statute itself. We also urge adoption of the floor statement submitted on behalf of the community two weeks ago, a copy of which is also attached for your convenience.

S. 843 authorized $45 million over five years for Centers of Excellence in Environmental Health and Autism. The bill was the product of months of detailed negotiations and compromises involving dozens of organizations in the ASD community, federal agencies, and a lot of hard work by Senate staff. The specific authorization reflected the need for a significant increase in funding for environmental research for two simple reasons.

First, the nation is confronting with the leading edge of a costly and debilitating ASD epidemic (1:166 affected children). As with any epidemic, while there may be underlying genetic susceptibilities, there must be an environmental cause (virus, fungus, heavy metals, pollutants, etc.). Once the cause is discovered, immediate steps can be taken to prevent new cases and abate the epidemic.

Second, as is the case with lead poisoning, many cancers, and several other chronic disorders, knowledge of the environmental cause or triggers leads directly to effective treatments. These will provide those with ASD the best possible quality of life and the ability to make the greatest possible contributions to society.

Even with the more comprehensive list of subject matter topics for research focusing on the cause, prevention, and treatment for ASD which you have included in your draft, whether the research in fact gets done depends on the money actually spent. We recognize that as an authorizing bill this is just the first step, and that the ultimate research agenda depends on appropriations and discretionary decisions. However, clear Congressional direction at the authorizing stage will give the community an important tool, and Congress a point of reference for oversight, to work with the appropriations committees and the administration to implement the needed research agenda.

The federal officials most responsible for funding research into the cause and treatment for ASD provide the best – and frankly scariest – justification for a Congressionally mandated significant increase in funding, accountability, and oversight. CDC Director Dr. Gerberding was recently quoted in a November 22 UPI story (“Autism Picture Still Incomplete”): “We just simply don’t have answers to the cause of this disorder or the disorders that fall into the autism spectrum, . . . we don’t have a complete picture of the scope of the problem.” NIMH Director Insel was quoted in the same article: “We don’t really understand that whole landscape very well, . . . There's just a whole series of questions that we need to begin to define answers to much more precisely.” “Ironically,” Insel admitted, “this is such a high priority for the National Institutes of Health -- and we have a large hospital and a huge clinic, with 18,000 people here in Bethesda -- (but) there has not been an autism program here until now. . . . As it is, autism has arrived at the stage where polio stood in the mid-1950s.” Dr. Gerberding conceded in an earlier article (“Autism Research Stance Shifting?): “"When you're dealing with a problem as complicated as this one and as important to so many children and so many families across the United States, we have a responsibility to be open to any and all hypotheses.” Exactly so, but Congress must direct, appropriate, and oversee funding to make sure that no stone is left unturned.

Solutions to the many ASD puzzles must be based upon sound science. But the urgency of the need coupled with a lackluster track record of NIH discretionary decisions underfunding needed research in the past demands more active Congressional direction and oversight. We fully support your overall NIH initiative for improved transparency and accountability, and want these principles applied against the ASD epidemic immediately.

The enclosed critical review article, from Congressman Barton’s own district – the University of Texas Southwestern Medical Center, provides an excellent roadmap and summary of recent research, much of it privately funded, on the environmental causes and the various biological dysfunctions associated with ASD. The existence of an epidemic indicates environmental causation:

The increase in public awareness and broadening of the criteria may be possible contributing factors; however, the substantial increase in the rate of autism revealed by epidemiological studies and government reports implicates the importance of external or environmental factors that may be changing (USDE, 2003; Chakrabarti and Fombonne, 2001; Palmer et al., 2006).

Several environment-based mechanisms of causation are set forth:

Many theories were postulated regarding the underlying cause of autism. For example, autism was implicated to be related to the measles, mumps, and rubella vaccine (Wakefield et al., 1998, 2000; Wakefield, 2003); mercury in vaccines (Bernard et al., 2002; McGinnis, 2001); immune system dysfunction (Cohly and Panja, 2005; Warren et al., 1990, 1992, 1995; Singh et al., 1993; Weizman et al., 1982); fungal infection (Shaw et al., 1994; Shaw, 1996), toxicity (McFadden, 1996); metabolic abnormalities (Waring and Klovrza, 2000; Waring and O’Reilly, 1990; Alberti et al., 1999); and “leaky gut syndrome”(Vantrappen and Geboes, 1993). Most recently, studies have suggested that decreased glutathione levels and increased oxidative stress may play a role in the pathology (James et al., 2004). Which of the many theories may be correct and/or how the various theories may fit together remains unclear. It is important to note that these theories are based on small studies and much more research is needed.

But this orchard of low-hanging fruit will not get picked without a clear authorization from Congress.

The review cites several studies demonstrating that children with ASD have difficulty eliminating metals including mercury from vaccines and the environment. The review cites reports from the “real world” of families coping with ASD:

The Autism Research Institute collected data from over 22,300 parents of children with autism on the behavioral effects of biomedical interventions. The survey includes a list of 45 medications, 23 non-drug supplements or biomedical treatments, and 9 special diets. The parents were asked to rate the treatment on a 6-point scale. Of these 77 choices, parents rated chelation therapy (or the removal of heavy metals) as the highest. Seventy-six% of parents said that their child “got better” on this treatment. The next most effective treatment was a gluten and casein free diet at 65% (ARI, 2006).

Yet NIH has only recently announced but not yet begun a clinical trial of chelation that has been used by the few families that can afford it for years.

The article’s conclusion offers an ominous warning:

The evidence presented in this article suggests that some of these children may be experiencing neuronal cell damage sometime after birth as result of insult. The evidence also suggests that these children may be selectively vulnerable to the impact from external or environmental factors. Some children with autism may be like the canary in the coal mine, exposing policy and/or environmental issues that need to be addressed.

We hope that Congress will be able to say that it has done everything possible to stop and treat this epidemic.

The following organizations represent a broad range of families, advocates, and researchers involved with ASD. We appreciate your efforts and look forward to working with you to pass – and implement – a law that will truly make a meaningful difference for those with ASD and their families.

Sincerely,

The Deirdre Imus Environmental Center for Pediatric Oncology
Autism One
Generation Rescue
National Autism Association
SafeMinds
Talk About Curing Autism (TACA)