Fighting for Matthew: A Parent's Activism

By Liz Birt
Issue 115, November/December 2002

Liz Birt's son, Matthew, was diagnosed with pervasive developmental disorder/autism in December of 1996. In 1999, she and her husband took Matthew to the Royal Free Hospital in London for treatment. She described this trip in an article that appeared in the May-June 2000 issue of Mothering.

When we returned to the US from London in December of 1999, I was determined to get to the bottom of what caused Matthew's regression and inflammatory bowel disease and to do whatever I could to further the research of Andrew Wakefield, MD, the British gastroenterologist who made such a difference in my son's life and the lives of thousands of children suffering with abdominal pain like Matthew's.

I founded Medical Interventions for Autism (MIA), a section 501(c)(3) charity, to raise money for this important research. We have four fundraising groups, located in Chicago, Detroit, Ft. Lauderdale, and Boulder; these groups operate with no administrative overhead, employ no professional fundraisers, and are completely staffed by volunteers. Many of our volunteers are parents of autistic children, although having a child with autism is itself a 24/7 job; for many of us our "free time" starts at 10:00 p.m. Since its inception in December of 1999, MIA has raised over $300,000 for autism research, our Detroit chapter has received support from the Ted Lindsay Foundation, and we have established a goal to raise another $200,000 before the end of 2002. I also became involved in the creation of a research and clinical center for the treatment of children with developmental disabilities, including autism. The center, which will be located in South Florida, is a unique model for autism research and treatment. The principal participants are physicians Andrew Wakefield and Jeff Bradstreet. Dr. Wakefield brings to the project a wealth of research abilities in the fields of gastroenterology, virology, and immunology. Dr. Bradstreet is clinical director of the International Child Development Resource Center (ICDRC) in Palm City, Florida [see his article in this issue of Mothering].

I also have been using my skills as a lawyer to advocate for children with autism. In May 2000 I received a phone call from Lyn Redwood, a nurse practitioner from Atlanta and coauthor of a research paper entitled "Autism: A Unique Type of Mercury Poisoning." [See Lyn Redwood's articles in this issue of Mothering.] This paper, which was published in the peer-reviewed journal Medical Hypothesis, chronicles in detail the similarities between mercury poisoning and autism.1 The authors had met with the FDA and the Centers for Disease Control (CDC) to express their concerns regarding the continued use of pediatric vaccines containing thimerosal, but Lyn believed that their message fell on deaf ears. She asked me to become involved as a lawyer with this issue. I agreed, and thus SAFEMINDs was born.

SAFEMINDs--Sensible Action For Ending Mercury Induced Neurological Disorders--is primarily an advocacy and information group, although it has also funded several studies. Through the Freedom of Information Act, the group helped to uncover evidence that federal agencies have engaged in systematic distortion of the truth on this issue. We found a CDC document dated February 2000, based upon the Vaccine Safety Datalink Project, which cited a 2.48 relative risk of autism in children who were exposed to 62.5 mcgs of thimerosal from their vaccinations. [This was previously reported in Mothering no. 111, March-April 2002.] By June 2000, the CDC had amended this finding to 1.69 through what we believe to be a gross manipulation of the dataset.

We have asked the CDC repeatedly to allow independent researchers access to this database in order to perform vaccine safety studies. Thanks to advocacy groups such as SAFEMINDs and to the assistance of Congressmen Dan Burton (R-IN) and Dave Weldon (R-FL) and the Committee on Government Reform, the CDC recently changed its position and has agreed to allow access to this database by independent researchers, utilizing standard institutional controls to protect the confidentiality of the patients.

SAFEMINDs also uncovered documentary evidence that the issue of thimerosal came to the attention of government regulators well before the summer of 1999, when a decision was made to postpone the birth dose of hepatitis B because it contained thimerosal. The movement to ban thimerosal actually originated in Europe in the 1990s. The European Medicinal Evaluation Agency, the equivalent of our FDA, is on record favoring the removal of thimerosal from vaccines and biologics in 1998 due to concerns regarding its effect on an infant's developing neurological and immune systems. Here is one of the questions we would like answered: when did the FDA first become aware that thimerosal in pediatric vaccines was a health risk? In 1982, a panel of 15 experts convened by the FDA found that the use of mercury-containing ingredients in over-the-counter products was not safe or effective. But it was not until 1997, with the passage of the Food and Drug Modernization Act, that the FDA compiled a list of products that contained mercury. What was the FDA doing from 1982 until 1997 about the use of mercury in medicinal products, given that it had been advised by a panel of experts that the continued use of these products was dangerous?