Friday, May 2, 2008

Liz Birt and her advocacy for her child, autism

I am doing some back-reading on some of the autism blogs, and found this on Adventures in Autism (thanks again, Ginger). Liz Birt did some amazing work for the cause of autistic, vaccine-injured children while she was alive. She died tragically in 2005, and it is clear that the autism community was devastated. Her story of the regression of her son and her journey into making a difference deserves a thorough read. ... This is what I am talking about when I say vaccines need a harder look. These are the families. Hear them.

November 17, 2005
Illinois General Assembly
KidCare, Human Services Subcommittee 94th General Assembly
Testimony of Elizabeth Birt

Thank you for convening this hearing today regarding the issues facing Illinois families with autistic children. Because of the need for full disclosure and transparency regarding all issues before the Illinois General Assembly and the grave importance of this matter and its implications for public policy I would like to start off my stating that I have no financial conflicts of issue regarding autism, other than as the parent of a severely affected child, and that I receive no benefit directly or indirectly from pharmaceutical companies. I strongly urge that you require all individuals providing testimony to your subcommittee including those present today and those who have testified in the past to fully disclose all conflicts of interest.

I am the parent of an 11 year old child who was developmentally normal until he received two vaccinations, a thimerosal containing Hib and an MMR at approximately 15 months of age. Prior to his receipt of these vaccinations, my son could count to ten and said many words such as “mamma”, “daddy”, “ball”, “go”, Sasaa for his sister’s name; he pointed at objects of interests and played games like peek a boo and hide and seek. He loved to be held and had excellent eye contact. He had a history of ear infections but no serious medical problems. After the receipt of these immunizations, he ran a high fever. I gave him Tylenol as directed by his pediatrician.

After the vaccination, he developed a rash on the trunk of his body. I didn’t think that anything was seriously wrong and believed that all was normal with my adorable little boy. Within a few weeks of these immunizations my son developed chronic diarrhea; at first I believed it was the babysitter’s fault for giving him too much juice. As the weeks and months went by his gastrointestinal problems worsened. He also stopped acquiring language and insidiously he slipped away from me. We initially thought that he had hearing problems and had tubes inserted into his ears. We waited and watched and hoped. My son’s condition only worsened. Hestarted screaming uncontrollably and rubbing his stomach. It was like watching a fire die out ember by ember and there was no professional who could tell me how my child who had been so full of life and interactive was now in a world of his own.

Eventually my son received a diagnosis of PDD/NOS from a physician at Rush. The physician assured me that because my son still had skills left like stacking blocks that he would be “fine” and recommended speech therapy. This therapy was not covered by his father’s insurance company so we picked up the cost personally. My son then stopped sleeping through the night. He would awaken every night at around 3:00 A.M. screaming, smearing feces over himself, the carpet and walls. It was in one simple word “hell”. My husband and I took him to see a physician, Dr. Bennett Leventhal atUniversity of Chicago who diagnosed him as autistic. I will never forget that day. I had my son’s medical records with me from Dr. Michael Chez a neurologist, and asked him why his IGA was so low. IGA is the first line of defense in a person’s gastrointestinal and mucosal tract. I was told point blank that it wasn’t important. I asked him about my son’s behavioral issues such as rubbing his stomach, lying on the floor with his hands pressed against his stomach, and night time screaming. He didn’t say anything except it was perhaps a part of his autism-in other words his behavior was a psychotic result of his autism. I left the appointment feeling a sense of doom and that there was nothing that could be done for my son except to put him into an institution. It was one of the worst days of my life.

My son’s condition began to deteriorate further; he developed shingles, was chronically sick, had “shiners” under his eyes. Exasperated by the lack of medical care I set out on a journey to find out what exactly was wrong with my child. This journey led Matthew to the only treatment available for his chronic diarrhea. The care and compassion of a physician at the Royal Free Hospital in London, England by the name of Dr. Andrew Wakefield. His group had identified in a small study published in The Lancet in 1998 a group of 12 children who had been referred to the Royal Free Hospital by their local pediatricians. Much has been made of this study and of Dr. Wakefield’s work. You should know that Leo Kanner, the individual who first identified autism relied only on 11 case reports. I have included Dr. Wakefield’s CV with your handouts; he has published 133 peer reviewed studies. This is not the work of a “mad scientist”; this is the work of a dedicated researcher who trusted parents when they told him the story of their child’s illness.

To my astonishment, the children in Dr. Wakefield’s original study had a history of normal development and then lost language, social skills and had chronic intestinal problems following the receipt of an MMR vaccination. For me, it was the only path I could follow to find relief for my child. I took him to London and there he was actually worked up clinically for his gastrointestinal disease. He was seen by seven doctors including Dr. John Walker-Smith who is regarded as the foremost pediatric gastroenterologist at that time in the world. Using a simple xray which could have been ordered at any hospital in this country, the doctors found that my son was completely constipated. The mass in his colon was the size of a small cantaloupe. He was scoped and found to have inflammatory bowel disease and put on appropriate medication for his physical condition. Immediately he started sleeping through the night. His non stop diarrhea abated and he was a much happier child.

Unfortunately, for Matthew his gastrointestinal disease has worsened and he is now on immunosuppressive treatment because he developed lesions in his esophagus. He has had several grand mal seizures. He has documented measles virus infection in his intestine and cerebral spinal fluid that matches the vaccine strain. In addition, his body is unable to detoxify. He has antibodies to myelin basic protein which acts as a conductor for nerves in his brain. His immune system is dysregulated; he has high levels of inflammatory cytokines. He is currently being evaluated for kidney stones. In short, his body is a train wreck.

Matthew, given all of these physical problems is a sweet little boy; he is affectionate and likes to be with other children. He is mischevious; he knows the rules in the house likes to push them. He is not mentally retarded; he understands everything that is said to him; he can not however, communicate verbally and relies on his caregivers, sign language and guttural sounds to get by. He has learned how to snow ski through a program offered by Challenge Aspen and has participated in a camp for autistic children founded by myself and another parent in Colorado called Extreme Sports Camp. At this camp Matthew has learned to rock climb, ice skate, and loves white water rafting. To see his smile at camp is worth a million dollars.

What children and parents of autistic children need is enormous. There is no respite care; no medical care; and the insurance companies pay nothing for services unless you are clever in coding the claims. Our children have behavioral issues that must be managed but they are also chronically ill. We don’t even know how many children and their families desperately need services not just for today but for the future. The cost of lifetime care for an autistic child in unknown but some estimates peg the national cost to be 7 TRILLION DOLLARS. There are no group homes to put these children in when their parents can not care for them at home. My fear as parents age they will take the life of their child and their own. This has already happened in England.

I am here today not just for my son but for every family in Illinois who has been affected by the devastating disorder. I worked for over two years investigating the relationship between autism and neurodevelopmental disorders as an attorney for the House Committee on Government Reform. My job was to review thousands of pages of subpoenaed documents from our federal health agencies and pharmaceutical companies. The sad story is laid out in a book called “Evidence of Harm” by David Kirby; I urge everyone to read this book.

In 2004 the Institute of Medicine issued a report stating that there was no credible evidence of a link between neurodevelopmental disorders, including autism, and vaccines AND THAT NO FURTHER RESEARCH SHOULD BE CONDUCTED. This study has been highly criticized because it relied solely upon epidemiological studies that were questionable. The committee did not include the studies of researchers including Dr. Mady Hornig at Columbia University whose work on mice with autoimmune problems found that these mice exhibited obsessive compulsive disorders and had brain abnormalities similar to autistic individuals after the administration of thimerosal containing vaccines. It did not examine the presence of measles virus in the cerebral spinal fluid and not in healthy controls by Dr. Wakefield. It did not consider the work of Dr. Richard Deth of Northeastern University and Dr. Jill James of University of Arkansas demonstrating the ability of thimerosal at low levels to disrupt important metabolic pathways in cells nor the observation of these abnormalities in autistic children. In fact, none of these researchers were invited to present their findings.

One study in Denmark the IOM relied on reported an increase in the number of individuals diagnosed with autism following the removal of thimerosal containing vaccines from the vaccination schedule. What was not stated in the press and report is that the reason for the increase is that the Danish switched methods of counting autistic individuals to include both outpatient and inpatient cases. The famous CDC study authored by Thomas Verstraeten went through at least 5 “generations” of data manipulation. The author himself wrote in Pediatrics in April of 2004 that his study “does not state that we found evidence of an association, as a negative study would. It does state, on the contrary, that additional study is recommended, which the conclusion to which a neutral study must come.” The raw data from this study has apparently been destroyed and the CDC has denied access to the VSD database to independent researchers. I have personally as counsel to SAFEMINDS and for the Committee on Government Reform sought access with appropriate patient confidentiality safeguards to the database since 2001. The debate recently reached the floor of the United States Senate where Senators Lieberman and Harkin called for access to the data. In addition, this year an independent panel convened by the Institute of Medicine issued a report entitled “Vaccine Safety Research Data Access and Public Trust”. This report criticizes the CDC’s handling of this data which was bought by the taxpayers and questions why the data was moved to an independent non governmental entity in 2001 which would not only coincide with the removal of thimerosal containing vaccines from routine immunization schedules but remove it from FOIA. Many in Congress as well as respected scientists from all parts of this nation are urging that further research in this area continue; those scientists include two former heads of the National Institute of Enviornmental Health.

The “good” news is that despite this pronouncement by the IOM research is ongoing. Dr. Thomas Burbacker’s research demostrating that thimerosal in the brains of primates converted to inorganic mercury at a much greater rate than methylmercury (fish mercury) is in Phase II of funding despite the efforts of the federal government to stop this research. Phase I of this study concluded that “Knowledge of the toxicokinetics and developmental toxicity of thimerosal is needed to afford a meaningful assessment of the developmental effects of thimerosal-containing vaccines.” This study was published in Enviornmental Health Perspectives, an NIH peer reviewed publication in August of 2005. The IOM had full access to Dr. Burbaker’s research during the time they wrote their report. They never asked him to present his research.

Studies have been recently published demonstrating a breakdown of myelin in children with developmental disorders and just how toxic thimerosal is at minute quantities. I have included them in your handouts. As these studies are released the CDC is recommending that every pregnant woman and every child at 6 and 23 months receive a flu vaccine knowing that there is not enough manufacturing capacity to provide this vulnerable population with a thimerosal free vaccine. This action is at best negligent; to me it is immoral.

So how does my statement impact your committee? You have a lot of work to do to understand the scope of this problem and be assured that if vaccines are implicated that no one will help you pay for it. Today, there are ten bills before the Congress which would give blanket immunity to drug companies for vaccine injuries if the Secretary of HHS declares that the drug is necessary for a pandemic or epidemic. Further, if a citizen is injured they may not be able to access the Vaccine Compensation Act, as broken as it is, unless the Secretary of HHS allows them to do so. All meetings on vaccine matters will not be subject to FACA or FOIA; in other words all of this will be in complete secrecy.

One of the reasons that this legislation is being urged is the spin that liability issues have forced the manufacturers out of business. This is simply not the case and has been refuted in published reports. In fact, last year during the presidential election, Dr. Tony Faucci of the NIAID was quoted by the AP as stating “But that is only a very small part of the problem (liability for manufacturers)…More significant, are the low-profit margin vaccines provide, unpredictable demand and the complexity of the manufacturing process… The fragility of the vaccine enterprise is an issue that has been present for decades”. So now why is it all of a sudden a problem for the manufacturers? The answer is money and the more that the manufacturers can close off the liability exposure for products then the better. The only remaining hope for families of children who were lucky enough to know of the Vaccine Compensation Act’s three year statute of limitations from date of first symptoms limitation is to opt out. There are thousands of cases pending in Vaccine Court that will probably not be heard in my lifetime. The only chance they have is our trial system and a state court.

I believe in the concept of herd immunity; I support a vaccine program that is grounded in credible science; I believed in that system when I vaccinated my children; after 8 years I do not believe that this is the case. There are too many unanswered questions and so many injured children.

I urge this subcommittee to recommend that autism is a public health emergency in Illinois and to ask the Governor to declare it so. I urge Attorney General Lisa Madigan to utilize the talents of her staff to gain full access to the VSD. I urge this subcommittee to develop a comprehensive plan to identify affected children, provide meaningful support to their families; and to sit down with parents at the table and strategize on the best possible living arrangements for the children who are severely affected.

There is hope; I have included in your handouts an article recently published in the San Francisco Chronicle about a child who received appropriate medical and educational intervention for his “autism”; he has recovered and no longer has this diagnosis. Researchers at UC Davis Mind Institute, Mass General and other prestigious institutions are taking note and starting clinical studies to determine whether these treatments are effective. It may be that we have a constellation of “autisms” caused by not one gene but complex gene and environmental influences, including but not limited to vaccines.

We as a civilized society have an obligation to care for these children. If a portion of them were injured due to negligence on the part of federal health officials and pharmaceutical companies then so be it; what I have personally witnessed over the past eight years has been horrifying. I believe in our country and in the strength of its determination to overcome adversity. We must work together to solve this problem; I stand ready to help in any manner with the work of this committee.

Respectfully,
Elizabeth Birt
Founder, Medical Interventions for Autism Founder, SAFEMINDS Board Member
A-CHAMP Board Member NAA

1 comment:

Alicia said...

That's so sad.