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August 11, 2006
e-NEWS
BL Fisher Note:
For the past six months, representatives of autism advocacy organizations
have been working with Congress on federal legislation which will allocate
nearly one billion dollars in congressional appropriations to autism
research and educational and social service support for autistic children.
Some of the autism advocacy organizations represent parents who believe
their children's autism was vaccine-induced and other advocacy organizations
either take no position on the hypothesis that autism is vaccine-related or
disagree that vaccines play a role in development of autism in some
children.
On August 3, 2006, the Combating Autism Act (S. 843) was passed by the U.S.
Senate. It still must pass the House and then be signed into law by
President Bush.
According to Shelley Reynolds, co-founder and president of Unlocking Autism,
who has been working on the legislation, "Politics is a tricky business.
Sometimes things must be positioned in a certain way to get the end result
passed. It is a constant procedure of negotiation until the bill is signed
into law. In this case, the word vaccine had to be removed from the bill
itself and substituted with the less inflammatory word, "environmental."
Senator Enzi assured the organizations concerned that he would submit what
is called a colloquy when the bill was passed that would define that the
intention of the use of the word "environmental."
Below are statements by Senators Enzi (R- WY) Rich Santorum (R-PA), Edward
Kennedy (D-MS) and Christopher Dodd (D-CT) made on the floor of the U.S.
Senate on Aug. 3 explaining the intention of the language in the bill.
Colloquy of Sen. Enzi, Santorum, Sen. Kennedy, and Sen. Dodd
Senate
passage of S 843, Combating Autism Act
August 3, 2006
Mr. ENZI: Mr. President, I rise today in support of S 843, the
Combating Autism Act. I’m pleased to note that the Senate will pass this
bill today.
This legislation, which was recently reported out of the Senate Health,
Education, Labor, and Pensions Committee, focuses on expanding autism
spectrum disorder research and coordination at the National Institutes of
Health (NIH). It also increases awareness of autism spectrum disorder and
its symptoms through the Centers of Disease Control and Prevention (CDC).
Additionally, the bill integrates our various health, education, and
disability programs that serve individuals and families affected by autism
spectrum disorder and ensures that the community of people affected by this
disorder have a voice in all of this.
No one knows exactly how many individuals are affected by autism spectrum
disorder, but some studies suggest it could be as high as 1 out of every 166
American individuals.
But there are many things we do know about autism spectrum disorder. We know
we need to begin intervention as early as possible to help individuals with
autism spectrum disorder reach their full potential. And given the
importance of early intervention, we need further research into the possible
causes of autism spectrum disorder.
We need to understand more about the various forms of autism spectrum
disorder to improve our ability to provide the right kinds of intervention
and support. And, we need to provide better integration of the health,
education, and disability programs already available to meet the increased
demand for these interventions, supports and services.
I believe the “Combating Autism Act” is an important step toward addressing
these needs and finding some solutions that will improve the lives of
individuals and families whose daily lives have been turned upside down by
autism spectrum disorder.
This bill is the result of a tremendous amount of work across party lines. I
want to thank the original bill cosponsors, Senators Santorum and Dodd for
introducing this legislation and for working with me to fine-tune it. I
would also like to express my deep appreciation and thanks to the Ranking
Member, Senator Kennedy, for his hard work during this process. Of course,
in providing thanks to the members, I would be remiss if I did not mention
the staff. Specifically, I want to thank Jen Vesey with Sen. Santorum; Jim
Fenton, Ben Berwick, Tamar Magarik, and Elizabeth Hoffman with Sen. Dodd,
and Caya Lewis with Sen. Kennedy’s office, as well as my staff – Steve
Northrup, Aaron Bishop, Tec Chapman, Martina Bebin, and Shana Christrup.
I also want to thank the various groups and individuals who work on behalf
of individuals and families affected by autism spectrum disorder. I
appreciate the way in which this community of advocates has come together to
work with me and my colleagues on this. If they had not worked together so
well -- with each other and with us as our Committee worked on this bill --
I doubt we would be here today.
Mr. SANTORUM: Chairman Enzi, first let me express my sincere
gratitude to you and your staff for investing so much time and thoughtful
effort in this important legislation, as well as thank Senators Dodd and
Kennedy, and their staffs. Few things are more important than the health and
happiness of our nation’s children, and the Combating Autism Act will go a
long way to helping those diagnosed with Autism live up to their full
potential. We have a tremendous opportunity to make a real difference in the
lives of children with autism and their families. This federal investment
will lead to better understanding of autism, increase awareness, diagnosis
and intervention - all things that will make a profound impact on families
struggling for answers and hope.
Autism raises complex and emotional issues. All of us who worked so hard on
this legislation sought to keep the primary focus of the bill on autism
research and awareness. However, in addressing the key issues within S 843,
some have raised concerns regarding a potential link between vaccines,
vaccine components (such as thimerosal), and autism. Mr. Chairman, can you
clarify your position on this issue?
Mr. ENZI: I’m happy to do so. In 2004 the Institute of Medicine’s
Immunization Safety Review Committee concluded that the body of
epidemiological evidence “favors rejection of a causal relationship between
the MMR vaccine and autism spectrum disorder” and also “favors rejection of
a causal relationship between thimerosal-containing vaccines and autism
spectrum disorder.” The IOM committee also found that “potential biological
mechanisms for vaccine-induced autism spectrum disorder that have been
generated to date are theoretical only.”
However, the IOM committee also acknowledged that “[a]bsent biomarkers,
well-defined risk factors, or large effect sizes, the committee cannot rule
out, based on the epidemiological evidence, the possibility that vaccines
contribute to autism spectrum disorder in some small subset or very unusual
circumstances.” The IOM committee also noted that “experiments showing
effects of thimerosal on biochemical pathways in cell culture systems and
showing abnormalities in the immune system or metal metabolism in people
with autism spectrum disorder are provocative,” and suggested that “the
autism spectrum disorder research community should consider the appropriate
composition of the autism spectrum disorder research portfolio with some of
these new findings in mind.”
I agree with the IOM committee’s recommendation that “available funding for
autism spectrum disorder research be channeled to the most promising areas.”
The HELP Committee reported this bill without making the determination for
the autism spectrum disorder research community of what are the “most
promising areas” for investigation. Instead, the bill reported by the HELP
Committee contemplates key research activities, including environmental
research, that focus on a broad range of potential contributing factors,
with meaningful public involvement and advice in setting the research
agenda.
However, I want to be clear that, for the purposes of biomedical research,
no research avenue should be eliminated, including biomedical research
examining potential links between vaccines, vaccine components, and autism
spectrum disorder. Thus, I hope that the National Institutes of Health will
consider broad research avenues into this critical area, within the Autism
Centers of Excellence as well as the Centers of Excellence for Environmental
Health and Autism. No stone should remain unturned in trying to learn more
about this baffling disorder, especially given how little we know.
I also want to note that this broad statement is appropriately limited to
biomedical and not epidemiological research. Although S 843 provides for
specific centers of excellence to examine epidemiological issues related to
autism spectrum disorder, there is currently no expectation that the Centers
for Disease Control and Prevention should further pursue additional
epidemiological research regarding the link between autism spectrum disorder
and vaccines or vaccine components, unless new biomedical research provides
additional information about specific at-risk subpopulations. At this point,
given what we know and what has already been done in this area, no new
epidemiological research is required.
Mr. SANTORUM: I agree with your comments, Mr. Chairman. Thank you for
clarifying, and again for all of your hard work on this legislation.
Mr. KENNEDY: I also agree with your comments, Mr. Chairman.
Mr. DODD: As my colleagues are well aware, the prevalence of ASD in
the U.S. is 10 times greater than a decade ago. In my own state of
Connecticut, ASD diagnoses have increased by close to 1100 percent since
1993. What these numbers tell us is that ASD diagnoses are rising at truly
alarming rates and we simply must provide more answers to all those affected
by this devastating condition.
We must also create a larger pool of experts in the field so that families
can be directed to nearby specialty clinics for confirmation of diagnosis,
care and services. Waiting lists at the nation’s top developmental
disability centers are as long as 2 to 3 years, and families are often
forced to travel far from home to receive needed care and to participate in
clinical research studies. Increasing the number of trained physicians and
allied health professionals who can provide a medical home for individuals
with ASD will enable all those affected to receive the optimal and timely
care that they deserve.
It is my sincere hope and expectation that by expanding the federal response
to ASD and other developmental disabilities through the Combating Autism
Act, we will see improved research on ASD, including its causes, and
families across America will get the services they so urgently need. In our
search for the cause of this growing developmental disability, we should
close no doors on promising avenues of research. Through the Combating
Autism Act, all biomedical research opportunities on ASD can be pursued, and
they include environmental research examining potential links between
vaccines, vaccine components and ASD.
NVIC E-News is a free service of the National Vaccine Information Center
and is supported through membership donations.
NVIC is funded through the financial support of its members and does not
receive any government subsidies. Barbara Loe Fisher, President and Co-
founder.
Learn more about vaccines, diseases and how to protect your informed consent
rights at
http://www.nvic.org
NVIC
National Vaccine Information Center
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email: news@nvic.org
phone: 703-938-dpt3
web: http://www.nvic.org
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