[Congressional Record Volume 149, Number 63 (Wednesday, April 30, 2003)]
[House]
[Pages H3535-H3538]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
PROVIDING REMEDIES FOR AUTISTIC CHILDREN
The SPEAKER pro tempore. Under a previous order of the House, the
gentleman from Indiana (Mr. Burton) is recognized for 5 minutes.
Mr. BURTON of Indiana. Mr. Speaker, today we passed the IDEA bill,
which was designed to help children who have learning disabilities to
get the kind of attention they need in the educational systems across
this country. The bill was not a bad bill. It did not go far enough. We
only provide about 21 percent of the funds that are necessary. It
should be 40 percent. That is what we promised the States. We are not
there yet, but hopefully we will get there before too long.
The reason I am here on the floor tonight is because I have received
thousands of letters from parents of children who are autistic, and, as
autistic children, they do have these learning disabilities.
These parents believe, and I believe, after having hearings for the
past 4 years that their children, many, many of their children, have
been damaged by the mercury that was in children's vaccines. We have
been putting mercury from a product called thimerosal in children's
vaccines since the 1930s, and now that we are giving children 25 to 30
vaccinations before they start into kindergarten, you have a tremendous
amount of mercury being built up in their systems.
Mercury has a cumulative effect in the brain. So when you were giving
a child one shot, it might not have been so bad. Obviously, you do not
want mercury in their system, but the mercury was getting into the
brain, and in many cases it was not causing damage. But when you give a
child 30 shots before they start into kindergarten, many, many, many of
those children are going to have brain damage and neurological damage
such as autism.
I have received, as I said, thousands of letters from parents of
autistic children from around the country, and I have been coming down
here showing
[[Page H3536]]
pictures of these children and reading these letters, because the
pharmaceutical companies and the Congress of the United States have a
responsibility to those families who are suffering financially and
mentally from the terrible trauma of autism their children are going
through.
It used to be one in 10,000 children were autistic. Now it is 1 in
200. We have had a 50-fold increase in autism in the last 10 to 15
years. It is an absolute epidemic, and something has to be done about
it. We have been debating how to handle it in the Congress of the
United States.
Every child who is damaged by vaccine should have access to the
Vaccine Injury Compensation Fund, but many of these children and their
families who are autistic have not had access to that fund, and that is
why this debate rages on.
In the other body we have had some real problems, and that is why we
are trying to bring to the attention of the other body, the leader of
the other body, as well as Members of Congress, how deep this problem
is and how important it is to the people of this country that we get it
solved.
I do not have time to read a lot of letters tonight, but I want to
read part of one letter I received. It is many, many pages from a man
named James W. Coll. James is from Hanover, Pennsylvania. He has a son,
Jacob, who became autistic. He says in his letter, ``Jacob is 5. There
is no doubt in my mind that my son Jacob has thimerosal-induced
autism.''
Why does he say that? He says it for the same reason that I say that
about my grandson. My grandson was a very normal child, as Jacob
probably was, and he was speaking and he was laughing and he was a lot
of fun to be around. He actually got nine shots in one day, seven which
had mercury in them, and, 2 days later, he was running around banging
his head against the wall, flapping his arms, had chronic diarrhea and
constipation at the same time, and we lost him. He looked at you
blankly. He would not talk any more. He became incommunicado, if you
will.
That has happened to thousands and thousands of families across this
country. We cannot leave them high and dry. It is costing them hundreds
of thousands of dollars. They are mortgaging their homes, they selling
everything they have to take care of their children. They did not
realize they had access to the Vaccine Injury Compensation Fund until
the 3-year statute of limitations ran out.
We need to reopen that fund so that every person who has an autistic
child has a day in court, if you will, to make their case before the
fund to get money to help their child and help their family.
There is $1.8 billion in that fund. We protected the pharmaceutical
companies by allowing them to put so much money in the fund so that
they would not be sued when people are damaged by vaccines. So the
people who have been damaged by the vaccines ought to have access to
that fund. It should be non-adversarial. It is adversarial right now.
They have been keeping people out, they have been keeping children out,
and damaged children have been suffering, their families have been
suffering, and they have nowhere to turn.
So that is why every night I come down here and show pictures. These
are called ``The Faces of Autism.'' We have thousands of these
children. I have probably 50 or 60 here. Here is a new one we have. It
says on this, ``Vaccines Stole My Health, Childhood and Future. Don't
Steal My Rights.'' I think that is very important. We should not steal
this child's rights, or any child's rights. They should have access to
the Vaccine Injury Compensation Fund, they should have access to
education.
If we do not deal with these children now, they are going to grow up,
they have an average life expectancy, and if they cannot cope with
society and we do not deal with them now, we are going to pay 10, 20,
30 times more to take care of them when they are adults and they cannot
make a living and cannot function in our society. So it is absolutely
imperative.
I say this to my colleagues in the other body and here, we need to
pass legislation this year that will give these people access to the
Vaccine Injury Compensation Fund so that they will have somewhere to
turn and they won't be left high and dry.
I will be back here tomorrow night or several nights in the future to
bring up other cases, and I hope that we will be able to make this case
time and again to the American people until we get the job done.
Mr. Speaker, I include for the Record the letter from James W. Coll.
Dear Sir: I would like to begin this letter by telling you
a little about myself and my wife Christine. We are both 31
yrs old and have two children. We live in Hanover,
Pennsylvania. She is a stay-at-home mom and I am a paramedic
for a private company in Washington, DC. My older son James
is eight yrs old and my younger son Jacob is 5. There is no
doubt in my mind that my son Jacob has thimeroSal-induced
autism. I am going to tell you my family's story the best way
I can. Before I get started I just want to tell you that my
heart goes out to you, your daughter and grandchild. I know
for me it is the most challenging thing I ever faced. I feel
like I can related more to parents of autistic children than
my own distant family.
My son Jacob was born on July 21, 1997 in Pittsburgh, PA.
He was born by cesarean section because he weighed ten pounds
and was too big for a vaginal delivery. His Apgars were
normal at birth and there were no complications after
delivery. He received his first vaccination, which was the
hepatitis one, at the hospital, just like all children in
America. During the first few weeks he was home, we noticed
he vomited his formula a lot. Some took him to his
pediatrician. He was then put on Soy formula and it was
thought he might be lactose intolerant. This did not help
much. He would still gag and vomit. It wasn't all the time.
He was still able to hold enough down to thrive and grow. The
pediatrician told us that this was a problem for some
children and that it would subside in time. During the first
year of his life he learned to crawl. This milestone appeared
normal. There were some things that confused us. He did not
like to be sat down in the grass outside, he would cry
inconsolably and wanted to be picked up. His eye contact with
us was not very good. You could not capture his interest with
toys. He liked to be held close to us a lot and would put his
face next to ours. He was quiet unless he was hungry or
something disturbed him. Sometimes we would push him in the
stroller and he would cry when we tried to push him back
home. He was very hard to console at these times. We just
thought he was different and this was his personality. My
mother told me I was a fussy baby. At this point we never
suspected autism. We didn't even know anything about autism,
outside of the movie Rainman. At a year old he received more
immunizations. They were given at one of his pediatrician's
offices, Dr. Tuchin. After that we noticed that his glands in
his neck, under his armpits and on the back of his head,
swelled up. They appeared like little peas under his skin.
His pediatrician told us he had a virus and that this was
normal because his body was fighting off infection. She did
not feel any testing was necessary. Myself and my wife
thought it was and a blood test was ordered at Children's
Hospital of Pittsburgh. The results were unclear. The CMV
virus was suspected or a virus that closely mimicked CMV.
There wasn't real concern by the physicians in charge of
Jacob's care. In fact, we seemed to bother his pediatrician
because she was not very nice to us about this problem and
wrote little sarcastic notes in his chart about the testing.
Otherwise he continued to grow and thrive, despite his food
sensitivity and everything else (as in his vital signs and
physical appearance appeared normal). His lymph nodes stayed
enlarged for about six months from when he was a year old. We
were just told it takes a while for them to go back down and
it was a good sign because his body was fighting off the
virus. From 1\1/2\ years old to 2\1/2\ years old his food
sensitivity continued to be a problem and a lot of solid food
made him throw up. We were referred to Children's Hospital of
Pittsburgh Occupational Food Sensitivity Clinic. They
observed Jacob eat french fries. They wanted to feed him
pudding, which to this day he dislikes. They told us that he
had some food sensitivities of an unknown cause and that he
needed therapy. The team of therapists who observed him
wanted to send a therapist to our house a couple of times a
week and teach him to eat different foods. This idea, to us,
seemed unnatural. We did not think this would help him. We
decided to just keep on feeding him what he liked and he
would out grow this. The only things he would eat were
chicken and fries, grilled cheese, cookies--basically,
anything dry and tasty. He does not eat any vegetables to
this day, or wet foods. He always coughed a lot too when he
drank liquids. Our doctor told us not to worry, as long as he
did not get pneumonia. His speech was very limited at 2 yrs
old. Sometimes he could say Mom or Dad, but it wasn't all the
time. He would jump up and down a lot and flap his hands in
front of the TV. We thought he was just happy and playing. He
did not have interests or imaginary play with his toys. He
liked only push button toys. In the back of my mind and my
wife's we knew he was a little different, but we thought if
we just gave him some time he would start talking more and
eat more foods, and not be so hyperactive. In February, 2000
we moved to the Washington, DC area because I got a job offer
paying more money. We moved to a small 2 bedroom apartment in
[[Page H3537]]
Woodbridge, VA. The people downstairs complained a lot
because my son jumped up and down and they could hear it. We
lived there six months and the management would not renew
our lease because of the noise of the jumping and Jacob's
tantrums. During this time my wife took Jacob to his new
pediatrician, Dr. John Farber. When he was approximately 3
years. old, Dr. Farber diagnosed Jacob with Pervasive
Developmental Disorder. He told us this term coincided
with autism and that Jacob would improve in time or that
we should go to Child Find Services in the county in
Virginia in which we lived. My wife took Jacob there. It
was a hot day and his evaluation took place in a trailer
which was not air-conditioned. My son tantrumed and did
not like it there. They could not even test him. They
agreed with the diagnosis. We later learned that this term
is routinely used with children when the child is young
and that a physician is not ready to totally label the
child autistic. We then took Jacob to Johns Hopkins
University Hospital in Baltimore, Maryland for a second
opinion. They had a special clinical therapy place called
the Kennedy Krieger Institute. There at approximately 3\1/
2\ years. old he was examined by a Dr. Andrew Zimmerman
who diagnosed him with Autistic Spectrum Disorder. He also
had some bloodwork done which ruled out Fragile X
Syndrome. He told us to find a good speech therapist. At
that time we had moved to Fredericksburg, Virginia where
rent was cheaper and we could afford to live in a nice
rental town-home community. We found a speech therapist,
but we didn't think this was very effective. She was
trying to teach Jacob to talk more with picture cards. We
didn't feel this was intense enough. We then learned of a
therapy called Applied Behavioral Analyses. We tried to
get the Spotsylvania County School District to pay for a
40 hour week program which was recommended by all the six
physicians that examined Jacob. We also had his diagnoses
confirmed by other physicians. We have diagnoses letters
from all of them. We were hoping for a better second
opinion. We were hoping Dr. Farber was wrong. The county
school services would only pay for 20 hours a week of in-
home services. ABA is a therapy that consists of teaching
your child tasks, by breaking them down into smaller steps
and doing them over and over again, until the child
understands. Every verbal sentence is given concrete
meaning the child can associate with. This therapy was
developed by Dr. Lovas of UCLA. I'm sure you probably
heard of it. In September, 2001, we moved back to
Pittsburgh, PA and rented a small house. We did this
because we found out that Pittsburgh had the Allegheny
intermediate unit which payed for these services. This was
funded by the State of Pennsylvania. They had a Lovas
replication site which taught ABA therapy.
We had Jacob evaluated and we are setting up an in-home
therapy workshop for Jacob. After a couple of workshops,
though we decided that we did not like the way he was treated
they wanted to isolate Jacob when he had a tantrum and ignore
him. This seemed very unnatural to us. A lot of people view
this therapy as programming a child like a robot. Myself and
my wife agree. At least in my son's case, we don't feel it's
the answer. After that we decided there was no point in
staying in Pittsburgh. Approximately one year ago we
purchased a new home in Hanover, PA. My job was still in
Washington, DC. When we lived in Pittsburgh, I drove 250
miles to work, stayed the weekend and drove home on Mondays.
We chose Hanover because it's the closest you can be to the
DC area, and still be in PA. If we ever decide in the future
that PA is the way we want to go, we will still live in PA,
which will pay for it. After we moved to Hanover in March
2002 we learned there were doctors who specialized in
biologically treating children with autism. They follow a
protocol that the Autism Research Institute in San Diego
California developed. It's called the Don Protocol. The
Autism Research Institute sent us a list of doctors
nationwide who were trained by the Autism Research Institute
and attend the lectures. Most of these doctors are into
homeopathic medicine and don't take health insurance. I make
about $70,000 a year. I definitely didn't have the money left
over to privately pay for a physician. We were fortunate and
found a doctor in Baltimore, MD which is about 35 miles south
of Hanover. His name is Arnold Brenner. He has been treating
children with autism and other disabilities for 20 yrs. When
we first took Jacob he ordered blood work and a hair
analysis. The purpose behind this was to look for a cause of
Jacob's autism. Then you can give supplements or change the
diet so the child's nervous system is not irritated, thus
improving the symptoms. We found out that Jacob was allergic
to gluten and casein, and that he had an abnormal reading of
mercury in his hair. We were shocked! My son's mercury
reading was in the low medium range. Most people don't have
any in their body. This also proves that Jacob's body could
not detoxify the thimerosal from the immunizations. I feel
like my child has been assaulted by the pharmaceutical
industry. Mercury is toxic to humans. Science has known this
for a long time. Why then has the Ely Lilly Company produced
it (thimerosal) for the pharmaceutical manufacturers? They
have knowingly poisoned our children. The only thing that
keeps me from going crazy is the fact that I love my son and
my family. Jacob is being treated with a medication called
Chemet. It was previously used to treat lead poisoning. The
goal of the therapy is to remove the mercury from the body.
His urine is tested every four weeks and sure enough,
there are traces of mercury in it. Our doctor told us the
only other way he could have gotten mercury in his body
was from eating fish, and we don't eat any fish. He also
takes daily vitamins that come from a place called
Kirkmans Labs, which are specially formulated for artistic
individuals. In addition to this, he takes about ten other
supplements which support his liver and supplement any
other abnormalities in his blood work. We also learned
that mercury poisoning can cause allergies to casein and
gluten. My son now is on a case/gluten-free-diet, which is
also recommended during the chelation process. We don't
know if the chelation is really working yet. The Doctor
tells us that the 20 other children that he is chelating
are all making improvements. I don't know if this will
work in my son's case. I am hoping and praying. Chelation
is a relatively new therapy. It has only been in use for
about two years. Jacob's doctor feels Jacob was not born
this way and that the immunizations may have caused it. He
told me that he has found that when you remove the
mercury, the symptoms improve. The Chemet costs about $500
for a one-month supply. Fortunately my insurance covers
it, the blood work, and some of the urine testing. The
vitamins are not covered. So far I've spent approximately
$700, in all. My son is going to be six years old in
July--July 21st. He is not potty-trained and doesn't
understand to go to the bathroom when he has the urge. We
are trying to work at this. His speech consists of loudly
saying what he wants. Examples are: Cookies! Drink!
Chocolate! We can understand it, but it's not real
pronounced. He says ``stair,'' to get help over the gate,
which is in the doorway of his room. He eats with his
fingers and throws the food he doesn't want on the floor.
He rocks on a kitchen chair when he sits in it, on his
knees. He'll rock the chair as he kneels on it, while
holding onto the backrest with his hands. You have to tell
him all day long to turn around and sit down. He'll
listen, but thirty seconds later he'll get right back up
and rock again. He also likes to jump on the couch and
stand on the armrest. Again you have to tell him to get
down all day long. He will get right back up and keep
doing it. He doesn't understand about danger. Examples
are: a hot stove, hot water, falling from heights, such as
the couch. He needs to be watched and constantly
supervised all day long. He doesn't understand the
reasoning behind everything. Examples of this are: ``Jacob
don't rip the pages out of your book,'' ``Jacob, don't run
out in the street.'' He cannot bathe himself. He cannot
write his name or draw simple pictures. We buy him toys
that are at a 2-yr-old level. He cannot brush his teeth by
himself. He will put it in his mouth, but usually just
sucks the tooth paste off it. Sometimes he screams at the
top of his lungs for no apparent reason. We know it's a
nervous impulse he cannot control. If I tell him to shut
the refrigerator door, he might go and do it, but it's
after I say it 5 times. He can understand simple
instructions, such as ``stand up,'' ``sit down,'' ``Jacob,
come here'' (sometimes). He walks on his tiptoes,
frontwards and backwards all day long. When he's home, he
takes all his clothes off. He won't sit at our dinner
table through the whole meal. He'll get up and run around
with food in his mouth. Sometimes he's aggressive and
he'll bite or pinch you if he's upset about something.
Myself and my wife understand because we love him and we
know he has a disorder. Our day consists of getting up,
bathing him, getting him to take all his vitamins and
Chemet. We use a syringe because he can't tolerate a spoon
in his mouth. All his food has to be made and purchased at
Health Food Stores. On top of this, you have to watch him
while you do all this to make sure he doesn't fall and
break his leg or something worse. He likes to take a ride
in the car and he'll let you know he wants to, by carrying
an article of clothing he wears, over to you, because he
usually just walks around at home in his diaper. He knows
he has to put clothes on to go outside--although the
article of clothing he brings you may not always be his
own. He cannot dress himself. You have to help him with
zippers and buttons. He may, in the summer, be able to put
a pair of stretch elastic shorts on, but he may put them
on backwards. You cannot explain to him that the tag on
the shorts goes in the back. His joints in his wrists are
weak and he has poor muscle tone in his arms. Sometimes
his wrists crack. He is very affectionate and will hug me
and his mom. His brother, too. He likes to be around us
and likes when I wrestle with him. He will say ``mom,''
but sometimes has difficulty saying ``dad.'' I took him in
my backyard a couple of days ago and he will toss a big
ball with me, if we stand about 3 feet apart. He looked in
the sky, saw some birds and said ``birds.'' This gives me
hope that the Chemet is working. I hope this gives you a
picture of what my son is like. This disorder has also
affected my older boy greatly. I can't spend time with
James because I have to help my wife watch Jacob. My wife
watches Jacob by herself for 72 hours, Friday,
Saturday, and Sunday every week. During that time I'm
working a 72 hour shift in Washington, DC. I'm a paramedic
and work for a private ambulance company. The company is
not that busy at night so I am able to get sleep. I'm off
Monday through Thursday every week, which is
[[Page H3538]]
spent watching Jacob and changing his diapers. This works
out well because it gives my wife a break and a chance to
go out with my son James. Jacob takes melatonin at night,
which helps him sleep. Ninety-five percent of the time now
he sleeps a full night. Before he would stay up till 3
a.m. and wake up at 7 a.m. This was exhausting for me and
my wife. He goes to bed at midnight now and wakes up at 10
a.m. To change jobs now would be very hard for me. I would
like to, but my family needs this break every week. This
disorder has limited my career, but I greatly appreciate
the flexibility of my employer. When I found out a bill
was sneaked into the Homeland Security Act, I was outraged
that someone would try to cover this up. I am glad it was
removed. As for a 3 year statute of limitations, this
should not apply in thimerosal-induced autism. Nobody
knowingly decided to inject a harmful substance into their
child. We immunized our children because it was
recommended to us by the health care industry. I am not
proud to be an American. Our standard of living is good
and this is also not just a U.S. problem, but a world-wide
problem. Our country should have made sure that these
immunizations were not given to children. Mercury is
toxic! That's why it's not in thermometers. That's why
they don't let kids play with it in science class anymore.
As soon as they made this discovery about mercury, it
should have been removed from the immunizations. I have
heard they found out mercury was toxic to humans 20 years
ago. But our country still let the Ely Lilly Co.
manufacture it to be used in multidose vials of
immunizations. Why is it recently that all the
manufacturers removed thimerosal from the immunizations?
Simply because they know it causes autism. I will only
believe in this country again if every family in my
situation is compensated, and I don't mean thousands, I
mean millions of dollars for each family. And if chelotion
does work, it needs to be paid for by our government, NO
QUESTIONS ASKED. Whoever put thimerosal in immunizations
and knew it could cause autism, needs to be punished to
the fullest extent of the law! A life sentence for these
people would be getting off easy. Congressman Burton, if
you need any copies of my son's testing or medical
records, please let me know. I hope the good people on
your side of the government are able to overcome the
people who knew about this and didn't care about hurting
innocent children like my son Jacob.
Yours truly,
James W. Coll.
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