Fighting for Matthew: A Parent’s Activism

By Liz Birt
Issue 115, November/December 2002

Maurice Lopez, Liz Birt, and children, Andrew, Sarah, and Matthew Lopez.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?

One sign that the FDA may have had a plan in place prior to 1999 is an e-mail, entered as Exhibit 15 in the June 19, 2002, hearings of the US House of Representatives Committee on Government Reform on “The Status of Research into Vaccine Safety and Autism.” On June 29, 1999, FDA scientist Peter Patriarca wrote to two CDC employees, Roger Bernier, PhD, and Jose Codero, MD, “The fact of the matter is that an ‘interim plan’ (for potential removal of thimerosal) has already been in place for many years we just need to ‘speed up’ the existing plan not create a ‘new’ interim plan.” The e-mail also stated that one of the negative results of announcing an immediate removal of thimerosal from vaccines by the FDA and CDC would be that the FDA would be subject to criticism for being asleep at the switch for decades, by allowing a potentially hazardous compound to remain in many childhood vaccines, and not forcing manufacturers to exclude it from new products. Will also raise questions about the various advisory bodies about aggressive recommendations for use. We must keep in mind that the dose of ethylmercury was not generated by ‘rocket science’: conversion of the percent thimerosal to actual ug of mercury involves ninth grade algebra. What took the FDA so long to do the calculations? Why didn’t CDC and the advisory bodies do these calculations while rapidly expanding the childhood immunization schedule?

As a parent, I continue to be appalled by the lack of oversight at the FDA. There must be personal accountability for the FDA’s failure to act. In the past 30 years, the prevalence rate for autism in the US and UK has grown from 1 in 2000 in children born before 1990 to 1 in 150, according to the CDC’s own study from Brick Township, New Jersey. In the UK, the National Autistic Society reports that 1 in 86 children are now diagnosed on the autistic spectrum. We need independent research into the causes of autism, for without determining the cause, there can be no cure.

NOTE
1. S. Bernard et al., “Autism: A Novel Form of Mercury Poisoning,” Medical Hypothesis 56, no. 4 (2001): 462-471.

FOR MORE INFORMATION
Medical Interventions for Autism (MIA)
www.miaautism.org

Liz Birt, a corporate attorney by training, lives in Wilmette, Illinois, with her husband, Maurice Lopez, and their three children: Sarah (10), Matthew (8), and Andrew (6).

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