HELP IMPROVE THE COMBATING AUTISM ACT 2005

Dear Parents,

This is vitally important. Please read.

The Combating Autism Act (S. 843 and H.R. 2421) will determine:

1. The amount of research money spent on autism for the next five years.
2. Where the money is spent
3. What types of research we can expect to see for our children

The bill is a good start but falls far short of what the autism community needs to help our children suffering now.

The bill allocates a total of approximately $900 million for 5 years (or $180 million per year). Currently autism gets $93 million per year.

Considering that autism is at epidemic proportions and is the largest public health disaster ever to occur among children, this figure is pitifully below the amount needed. (AIDS affects roughly the same number of people in America, yet receives over $900 million for ONE year (or $4.5 BILLION for 5 years). Juvenile diabetes also gets more money than autism as well even though there are more autistic children than children with juvenile diabetes, juvenile rheumatoid arthritis, and cancer combined.) We don’t want to take away money from others. We just want our fair share! We need to stand up for our kids now—or wait another five years.

RE: The Combating Autism Act—Of the $900 million over five years, the CDC will get over $550 million for epidemiology studies, early detection, and early intervention. (Intervention in the bill is described as, “Intervention includes referral to schools and agencies, including community, consumer, and parent-based agencies, and organizations and other programs mandated by part C of the Individuals with Disabilities Education Act (IDEA), which offer programs specifically designed to meet the unique needs of children with autism.” (In other words, the CDC will count our children and diagnose new children with hundreds of millions of dollars, give the new children they find very little or no intervention and have practically nothing left for treating the children suffering now.)

Furthermore, there is no mechanism for oversight stated in the bill. We’ve seen some questionable maneuvering from the CDC in the past, and must have transparency and accountability built into this legislation before giving them any more autism-related funding.

Only $36 million per year (3% of all the money) goes to actual biomedical research. $30 million is to be split among the 10 NIH STAART (Studies to Advance Autism Research and Treatment) centers. And even this inadequate figure includes more screening and data collection activities that already dominate this legislation. There is another $6 million for 3 NIEHS centers. And, there is an additional $14 million allocated to 10 CPEA’s (Collaborative Programs of Excellence in Autism) centers but sadly this money is earmarked for coordination and data sharing between centers – not actual research. Averaged among 23 centers, this means that each center will get LESS than $2.17 million a year to develop treatments for an epidemic of children. If any of this money is used for salaries and overhead, even less will go to help our children. This is just not enough to address the immediate medical research our kids must have if they are to reach their full potential!!

Also, studies by experienced researchers regarding the effects of ethyl mercury / thimerosal exposure are already being turned away by the NIH. We are quite concerned that if the bill doesn’t spell out that research must be done to examine these toxic exposures, such studies will not be done at all. The scientists whose work has shown the most promise for devising real treatments for our injured children are currently receiving NO GOVERNMENT FUNDING to further this most critical research.

What can you do:

Contact the current co-sponsors. Tell them these four things:

1. We need amendments in the bill to provide more money for biomedical research, services and treatments. Less than $36 million earmarked for biomedical research and $14 million for the collaboration/coordination that goes with it – split among 23 centers for 5 years ($2.17 million / autism center/year) is just not acceptable. Even more of an insult is the provision stating that research addressing environmental concerns will start AFTER July 2008. With proposed CDC/HRSA funding at 18 times higher than research funding geared towards developing treatments, we think the scales are overwhelmingly tipped away from what is most promising for our children.

2. We need research in these areas now: developmental neurobiology, immunology, endocrinology, gastroenterology, epigenetics (the study of heritable changes in gene function that occur without the change in sequence of the DNA, i.e. DNA methylation) and toxicology (with emphasis upon researching the environmental factors / mercury / thimerosal connection). Those at US health agencies in a position to help our children must follow the truth—no matter where it leads.

3. We must fund biomedical research of treatments that are actually helping our children. (Methylation protocol, chelation, diet, supplements, etc.) Why are they helping? Is there more we can do in this fruitful area?

4. Current services for autistic individuals are not enough in communities, schools, districts and states to meet the needs of our population. We need help. 80% of all autistic individuals in America are 16 years old and younger. Current housing is inadequate. What are we going to do with all of these children as they get older?

5. We must pass the Mercury-Free Vaccines Act of 2005 – Bills HR 881 and S 1422. The House bill has 70 co-sponsors. The Senate has ZERO.

The list of sponsors and co-sponsors of the Combating Autism Act (S. 843 and HR 2421) are below. Contact information is available by going to http://capwiz.com/a-champ/dbq/officials/ and typing in the legislators’ last names.

S. 843
Sponsor: Sen. Rick Santorum (PA)
Co-Sponsors:
Sen. Akaka, Daniel (HI)
Sen. Cantwell, Maria (WA)
Sen. Clinton, Hillary (NY)
Sen. Cochran, Thad (MS)
Sen. Coleman, Norm (MN)
Sen. Collins, Susan (ME)
Sen. Corzine, Jon S. (NJ)
Sen. Dayton, Mark (MN)
Sen. Dodd, Christopher (CT)
Sen. Isakson, Johnny (GA)
Sen. Jeffords, James (VT)
Sen. Johnson, Tim (SD)
Sen. Kerry, John (MA)
Sen. Landrieu, Mary (LA)
Sen. Lautenberg, Frank (NJ)
Sen. Leahy, Patrick (VT)
Sen. Leiberman, Joseph (CT)
Sen. Pryor, Mark (AR)

H.R. 2421
Sponsor: Rep. Mary Bono (CA)
Co-Sponsors:
Rep. Bishop, Sanford (GA)
Rep. Boswell, Leonard (IA)
Rep. Butterfield, G.K. (NC)
Rep. Calvery, Ken (CA)
Rep. Crowley, Joseph (NY)
Rep. Davis, Tom (VA)
Rep. DeGette, Diana (CO)
Rep. Fortuno, Luis (PR)
Rep. Fossella, Vito (NY)
Rep. Gordon, Bart (TN)
Rep Issa, Darrell (CA)
Rep. Kennedy, Patrick (RI)
Rep. Langevin, James (RI)
Rep. Lantos, Tom (CA)
Rep. Lowey, Nita (NY)
Rep. Lynch, Stephen (MA)
Rep. McCotter, Thaddeus (MI)
Rep. Mollohan, Alan (WV)
Rep. Moore, Dennis (KS)
Rep. Price, David (NC)
Rep. Ros-Lehtinen, Ileana (FL)
Rep. Rothman, Steven (NJ)
Rep. Sanders, Bernard (VT)
Rep. Schakowsky, Janice (IL)
Rep. Schiff, Adam (CA)
Rep. Strickland, Ted (OH)
Rep Van Hollen, Chris (MD)
Rep. Wasserman Schultz, Debbie (FL)

Additionally, if your Senator or Representative isn’t on the list, send them a copy of your concerns. Their contact information is available at http://www.nationalautismassociation.org/congress.php

Please help now by asking co-sponsors and others to add amendments that will go to the heart of need in the autism community. Otherwise this bill may go into effect and it could take another five years to get another opportunity to make such a positive difference in the research, service and treatment allocations needed for our children.

Our community needs to prove once again that we are, as the New York Times said earlier this year, a “potent national force.” Let’s get those Capitol Hill phones and fax machines working overtime! Make your phone calls and write your letters today!

National Autism Association
A-CHAMP
Autism One
Autism Research Institute
Dads Against Mercury
Generation Rescue
Moms Against Mercury
NoMercury
TACA - Talk About Curing Autism

For information, resources and practical strategies,
please visit: www.AutismConcepts.com.