[Congressional Record (Bound Edition), Volume 149 (2003), Part 8]
[House]
[Pages 10066-10069]
[From the U.S. 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,

[[Page 10067]]

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 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

[[Page 10068]]

     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 
     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

[[Page 10069]]

     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 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.

                          ____________________