[Congressional Record (Bound Edition), Volume 149 (2003), Part 1]
[Extensions of Remarks]
[Pages 303-305]
[From the U.S. Government Publishing Office, www.gpo.gov]




   THE AUTISM EPIDEMIC MUST BE A HIGH PRIORITY FOR THE 108TH CONGRESS

                                 ______
                                 

                            HON. DAN BURTON

                               of indiana

                    in the house of representatives

                       Wednesday, January 8, 2003

  Mr. BURTON of Indiana. Mr. Speaker, as we come back to Washington 
this January and set our priorities for the first session of the 108th 
Congress, I want to remind my colleagues that we have a looming 
crisis--a crisis of spirit, of policies, and of economics. This crisis 
is a looming and immediate economic crisis to the education system, to 
health care systems, to long-term housing and care for the disabled, to 
un-addressed research needs, and most especially to an increasing 
number of families across the country. This crisis is the autism 
epidemic.
  Over the last three years, you have heard me speak many times on this 
issue--and you will continue to hear me speak on this issue because we 
have our work cut out for us. You well know that my own grandson was 
adversely affected by a series of vaccines and became autistic. When I 
looked at what I thought was a rare condition, I found that my grandson 
was one among many similarly injured.
  Our health agencies have spent much of the last decade in denial 
about this problem. To date, they have not replicated clinical studies 
that point to a connection between autism entercolitis and the Measles, 
Mumps, Rubella (MMR) vaccine. Nor have our health agencies adequately 
addressed the dangers of thimerosal in pediatric vaccines and the fact 
that tens of thousands of families feel their children were injured 
from thimerosal-containing vaccines, leaving their child autistic.

[[Page 304]]

  Autism is a condition that has no known cure. Children, whether 
autistic from birth as a result of vaccine injury, genetic defects, or 
as a result of some other environmental influence, require lots of 
special medical and educational attention. The earlier a diagnosis is 
made and interventions are begun, the better the long-term outlook can 
be for a child. This is why the programs such as First Steps in Indiana 
are so important. However, this attention gets to be very expensive. 
Many of the private schools, specifically designed to educate children 
with autism have annual tuitions of $60,000 or more. Many of these 
children, when in public schools, require a full-time one-on-one aide, 
and numerous other special accommodations including speech and 
occupational therapies. Mainstream and Special Education Teachers need 
special autism teacher training. Every child with autism or any 
disability is entitled under Federal law to a free and appropriate 
education.


                          Prevalence of Autism

  Last week the Centers for Disease Control and Prevention (CDC) 
published in the Journal of the American Medical Association their 
Prevalence Study of Autism Rates in metropolitan Atlanta. In this 
report, they acknowledged that autism prevalence rates published prior 
to 1985 were 4 to 5 per 10,000 for autism spectrum disorders and 1 to 2 
per 10,000 for the more narrow definition of autism. In Atlanta in 
1996, the rates in children ages 3 to 10 had skyrocketed to a range of 
19 per 10,000 to 47 per 10,000. Two years ago, the CDC published their 
1998 prevalence study of children in Brick Township, New Jersey and 
found that 40 per 10,000 children were autistic and 67 per 10,000 were 
diagnosed with autism spectrum disorder.
  Let's do the math here. According to our latest Census, there are 
72.3 million children under the age of 18 in this country. If we 
extrapolate the Atlanta numbers nationwide, that would mean that in 
1996 we may have had between 137,370 and 339,810 children under the age 
of 18 with autism in this country. And if we use the newer 1998 Brick 
Township numbers, nationwide we had 289,200 children with autism and 
484,410 children on the autism spectrum.


                        Education System Burden

  The Department of Education tells us that it spends on average 
$12,234 more each year for a child with autism than it does for 
educating a non-disabled child. ($18,790 average cost of educating a 
child with autism compared to $6,556 to educate a non-disabled child.) 
So that would mean our education system needs to find additional 
resources on the magnitude of 3.5 to 5.9 billion dollars each year to 
educate children with autism. Since many of the children in our system 
are not getting the services they really need, the $18,790 is probably 
much lower than it ought to be. Realistically, schools will likely need 
about $40,000 per child with autism to provide the full breadth of 
services needed. So that would mean, the education system needs to 
budget approximately $16 billion dollars a year more just for children 
with autism.
  Most of this additional tax burden falls on the local and state tax 
base. We in Congress need to act quickly this session to keep our 
promise to pay the 40 percent Federal portion to the Individuals with 
Disabilities Education Act (IDEA) Part B. We haven't even come close to 
keeping that promise and local school jurisdictions are feeling the 
strain of carrying this burden. Many children go without services and 
that is a travesty.


                         Family Economic Burden

  We have learned from families that they often spend between $20,000 
and $50,000 each year, much of it not reimbursed to provide care and 
services for their autistic children. This is a huge burden for any 
family to carry. There are no magic bullet approaches to treating 
autism. As yet there is no cure. Half of the children with autism will 
never speak. Many of these children have severe food sensitivities, 
especially to casein and gluten, products that are in almost every 
processed food. Many are highly sensitive to many chemicals--even 
perfumes. Exposure to these foods or chemicals causes a serious 
deterioration in behavior. Many have autoimmune disorders; have enzyme 
deficiencies, and heavy metal toxicities. Some individuals with autism 
will go through bouts of self-injurious behavior. Some, particularly 
autistic boys, as they hit their teen years when all teenage boys 
experience that surge of testosterone, may experience aggressive 
behavior, requiring medication. While some individuals with autism, 
those with higher functioning autism or Asperger's Syndrome may be able 
to go on to college and even live independently, the vast majority of 
today's children with autism will never have that opportunity unless we 
can turn this epidemic around. The vast majority of these boys and 
girls will never have the chance to serve in the armed forces, to 
become doctors, lawyers, teachers, or astronauts. They will never have 
the chance that you and I have had to run for political office.


       Adults with Autism--Long-Term Care and Disability Housing

  We have no good numbers on how many autistic adults there are in this 
country. Many are institutionalized because their parents can no longer 
care for them. Obviously, our current infrastructure for long-term care 
for the disabled is not equipped to manage the more than tenfold 
increase they will be facing in the next decade.


                             Research Needs

  As I mentioned, there is no cure for autism. The research response to 
looking at causes, treatments, and possible cures for autism has been 
vastly inadequate. Out of a twenty-seven billion dollar budget, the 
National Institutes of Health has focused less than sixty million 
dollars on autism. A condition they say affects 1 in 250 children in 
this country and they only invested sixty million dollars to address 
the epidemic. And unfortunately, most of those sixty million dollars 
will never translate into treatments for autism or in answering the 
questions about a possible vaccine injury connection. The CDC, while 
spending over 930 million dollars on AIDS last year invested only about 
$11 million dollars on autism. We must treat this like an epidemic and 
mobilize research and services resources to address the epidemic.
  And most disturbing to families of vaccine-injured autistic children 
is that none of the government agencies have adequately addressed their 
concerns about thimerosal and the MMR vaccine. Instead of a replication 
of clinical evidence indicating low-level measles infection lingering 
in the gastrointestinal tract of children who became autistic after 
receiving the MMR vaccine, they cited CDC funded population-based 
epidemiological studies and used these epidemiological studies to say 
there is no connection between MMR and autism. In fact, epidemiological 
research cannot disprove clinical research. This is like trying to make 
lemonade with apples.
  And in two difference prevalence studies--in New Jersey and Georgia, 
the CDC had an opportunity to do a thorough evaluation of a potential 
link between autism and immunizations and they chose not to. In fact, 
the families in Brick Township requested this analysis. The CDC 
evaluated environmental influences and all other possible causes, but 
they chose not to look at the immunization records and see if there 
might be a link.
  In the CDC's initial evaluation in their Vaccine Safety Datalink 
(VSD) looking at a possible link between thimerosal-containing vaccines 
and any health conditions, they found a statistically significant 
correlation between thimerosal-containing vaccines and attention 
deficit disorder, neurological developmental disorders, speech and 
language delays and tics. After these initial findings, the CDC 
conducted a second evaluation that was in a much smaller population and 
did not find the same correlations. It is obvious that much more 
research is needed. We had to fight for more than two years to get the 
CDC to open up access to the VSD data, and unfortunately we have 
learned that some independent researchers are still having a hard time 
accessing this data. The Department needs to make sure that independent 
researchers can easily access this data to conduct replications of 
existing studies and to conduct new studies that the Department has not 
done.
  We hear repeatedly in Congressional hearings, in media 
communications, and through reports that ``there is no evidence that 
proves a connection between vaccines and autism.'' And of course, if 
the Department of Health and Human Services never funds or conducts the 
right studies, the evidence proving a connection will never exist. But 
the lack of well-designed research asking the right questions does not 
mean that a connection is not there. What it does mean is that our 
health agencies have failed the American public.
  For ten years, the Institute of Medicine has asked for research to be 
conducted in this area--to look at the autism-vaccine connection. This 
independent agency has repeatedly found that there is a paucity of 
studies evaluating vaccine adverse reactions. They found that there was 
inadequate science to rule in or rule out a connection between autism 
and thimerosal, but they also found that is was ``biologically 
plausible'' for such an injury to occur. We continue to see the 
Department of Health and Human Service's agencies stalling on doing the 
right kinds of studies. Vaccines are the only medications that are 
mandated for American citizens to receive as a condition of school and 
day care attendance and in some instances, for employment. Therefore, 
it is even more important that vaccines are as safe as possible, that 
only those vaccines that are really needed are mandated, and that we 
accelerate the level of well designed studies that

[[Page 305]]

actually answer the questions on vaccine adverse reactions.


          No More Conflicts of Interest in Research and Policy

  It is important for individuals and institutions that are going to 
conduct this research not to have financial ties to the manufacturers 
of vaccines. It is a travesty that the NIH and CDC only seem to fund 
those institutions that also receive a lot of pharmaceutical funding 
and do not fund those researchers who have chosen not to accept 
industry money and who are in the trenches answering the tough 
questions. Some of those researchers have been before the Committee on 
Government Reform. They had long histories of receiving NIH funding, 
but as soon as they started looking at vaccine injury issues, their NIH 
funding dried up. This is a clear indication to me that out health 
agencies are more devoted to the vaccine industry than to the vaccine 
injured. This must change. It is also a travesty that so many of the 
experts that HHS agencies appoint to sit on advisory committees are 
individuals who have financial ties to the pharmaceutical industry.


                The Vaccine Injury Compensation Program

  Late in the 107th Congress, we as a Congress failed this same 
community, Mr. Speaker, by tacking provisions into the Homeland 
Security Act which cut off the ability of families to seek legal 
recourse to the manufacturers of thimerosal, while not including 
provisions to include those families whose statute of limitation had 
expired, in the Vaccine Injury Compensation program. We as a Congress 
have failed this community. This retroactive provision was not about 
homeland security.
  We tripled infants' exposure to thimerosal through their vaccines for 
the first six months of life in the late 1980's. And yet it was not 
until 1999 that the FDA realized what they had done. It was more than 
ten years before they realized the dramatic increase in infants' 
exposure to mercury. Many families realized that their child became 
autistic after receiving vaccines, but they had nowhere to turn. 
Doctors discounted the possible connection because they were not 
informed until late 1999 of this thimerosal/mercury exposure in 
vaccines. Many of these families were not aware that the Vaccine Injury 
Compensation Program existed until well after their three year statute 
of limitations had expired. The Department of Health and Human Services 
acknowledges that their media campaigns on this program were 
inadequate. In fact it has been the advent of the Internet and online 
autism and vaccine injury discussion groups that first informed most of 
these families of this program.
  We must work quickly this year to first repeal the provisions of the 
Homeland Security Act that cut off families' legal options and second 
to pass legislation that will improve the Vaccine Injury Compensation 
Program for these families and for all individuals who face an injury 
from a covered vaccine. There is over 1.3 billion dollars in the trust 
fund. It is wrong that families have to fight for five, seven, even ten 
years to be compensated. It was not supposed to be a fight or a long 
process. The over-zealous government lawyers and program managers have 
lost sight of what this program is about. The Compensation program was 
supposed to be compassionate and non-litigious. When it was a close 
call, the program was supposed to rule in favor of the injured. 
Instead, the government goes to battle on many of the close cases and 
challenges the special masters when they lose. Oftentimes, when the 
Special Master rules in favor of the injured, Justice Department 
lawyers and HHS program managers call it a ``bad decision by the 
Special Master.'' They see this as litigation and not compensation and 
because of that mindset, in many instances; it has become exactly what 
Congress was trying to avoid--a difficult, litigious, drawn-out 
process.
  Mr. Speaker, in November I wrote the President and asked him to host 
a White House Conference on Autism to address many of these issues. 
Today the families of vaccine-injured children are in Washington to 
protest the loss of their legal options as a result of the Homeland 
Security Act provisions. I hope that my colleagues will take the time 
to listen to these families--their constituents--as they come around to 
their offices this week. Many of my colleagues are already members of 
the Autism Caucus and will be actively working on autism issues this 
year. Every member of Congress needs to pay attention to this issue. 
Autism and vaccine issues are not partisan issues. I am pleased that in 
the last congressional session we set aside partisanship and focused on 
the issues. I hope that as we bring legislation through committees and 
to the floor for votes, that I can count on all of your support to put 
the families first, to do the right thing, and pass effective, 
compassionate legislation. I am introducing legislation today to repeal 
the provisions in the Homeland Security Act and I hope to have all of 
your cooperation in getting this done quickly. These families deserve 
justice and the opportunity to seek compensation.

                          ____________________