On the evening of November 14th, the Centers for Disease Control invited parents to hear about their work and in turn give their input. What resulted was parents confronting officials and demanding answers to the ongoing controversy over vaccines and autism

by Ela Schwartz

The atmosphere in the auditorium at the Mount Sinai School of Medicine in Manhattan was charged with emotion.What was supposed to be a listening session held by The Centers for Disease Control and Prevention (CDC), in which parents were invited to give their input on the CDC’s autism research and activities, turned into a heated conflict between frustrated parents and CDC officials.

One by one, parents stepped up to the microphone. They told stories of lives and families devastated by autism. They related how they no longer trusted the CDC, government or traditional medical practitioners, and in some cases, were turning to alternative and homeopathic remedies. They accused the CDC and other agencies of hiding findings or manipulating data and suppressing efforts to uncover the truth. Some expressed gratitude just to be heard. Others spoke of hope for a cure for autism. They implored the doctors sitting uneasily at a desk onstage for answers but were told by a professional moderator that this was a listening session only.

The issue that overwhelmingly came to the forefront was the use of thimerosal in vaccines. One parent after the next told of seemingly typical infants who experienced a severe reaction to the vaccines and then regressed into autism.

Concern about a link between thimerosal, a mercury-based component added to vaccines to prevent contamination, and autism, attention deficit hyperactivity disorder (ADHD) and speech delay is nothing new. As a result, the amount of thimerosal in childhood vaccines has been reduced from 25 micrograms per shot prior to 1999 to trace amounts today, although it is still used in greater amounts in influenza vaccines and there are older vaccines still on the market.

But autism advocates have been pursuing the culpability of thimerosal and those who allowed its use for years, even after the Institute of Medicine (IOM) released a follow-up report in 2004 refuting any correlation between thimerosal and autism and recommending that funding be reallocated to more viable areas of research.

This evening’s event reiterated that the thimerosal issue is not going away and is likely to heat up even more with the publication in April of Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy (St. Martin’s Press) written by David Kirby, a journalist and contributor to The New York Times.

The CDC Presentations

The listening session had started quietly enough. One by one, three doctors from the CDC stepped up to the podium and gave presentations on the agency’s efforts being conducted under the Interagency Autism Coordinating Committee (IACC), a group of government agencies and parents directed by Congress to coordinate autism activities throughout the federal government in a 10-year research agenda.

"We at the CDC feel that autism is a devastating illness," said Dr. Dixie Snider, MD, MPH, chief of science for the CDC. "We and our colleagues feel this is a crisis situation. The CDC is committed to working with state and community partners." He outlined how the CDC is working with the National Institute of Mental Health to monitor the prevalence of autism, define trends over time, and identify potential causes and groups at highest risk.

Dr. Roger Bernier, Ph.D., M.P.H, associate director for science, National Immunization Program (NIP), said that research is being done with the NIP looking into a link between the measles vaccine and autism, as well as further studies examining the role of thimerosal and neurological conditions, and the incidence of autism cases prior to and after cessation of use of thimerosal and vaccines.

Dr. Marshalyn Yeargin-Allsopp, MD, epidemiologist and pediatrician with the CDC’s National Center of Birth Defects and Developmental Disabilities, spoke about tracking autism rates, risk factors and causes, and the Centers of Excellence for Autism and Developmental Disabilities Research and Epidemiology (CADDRE), which will track prevalence rates and look into nutritional, lifestyle, genetic and environmental factors.

A professional moderator then asked parents to step up to the microphones stationed on either side of the auditorium to give their feedback, which would be recorded and presented to the coordinating committee.

"My confidence in the CDC is severely diminished," said one mother of two children on the spectrum. "I believe in public health. I’m not against vaccines, but they have to be safe."

"The signs of autism are similar to mercury poisoning," said a mother of two children with autism who are now undergoing chelation therapy to push metals out of the system.

"I will no longer expose my son to mercury," said another mother, explaining that since her 12-year-old autistic son will not be permitted to attend school without being updated on his vaccines, she will most likely have to homeschool him as a result.

One father likened eradicating childhood diseases to fighting a war, "and in any war, there will be casualties. But you ruin the career of anyone who comes against you. I’m begging you, establish a coalition researcher with no conflicts of interest."

"You squandered the public trust," said John Gilmore, president of the National Autism Association’s New York metro chapter, and he, like many others, implored the CDC to release their original data on how more likely children who received vaccines with thimerosal were to develop autism.

"It was an odd event," Gilmore reflected when interviewed later. "It was strange to have bureaucrats just sitting there and not responding to a roomful of angry, well-informed parents."

According to Von Roebuck, CDC spokesperson, the reason the doctors didn’t respond is that "This was designed to be a listening session to explain the research CDC is doing. We thought if the event were an interaction, not everyone would get to be heard. We wanted to let everyone talk so we could understand as much as possible and then forward information to other agencies."

The New York event was the final in a series of four; the other meetings were held in Florida, California and Indiana. Roebuck said vaccines were not as major an issue at these other meetings. "We did get questions about vaccines, vaccine safety and the connection between vaccines and autism," he says, but that this concern was more evenly balanced with those of the importance of early detection, diagnosis and intervention; provider education; insurance coverage; research into environmental and genetic linkages; and alternative therapies.

"There has been ongoing research in regards to vaccines and autism," he adds. "Thus far we do not see any link. We are doing more long-term projects and continuing to gather more information."

Roebuck says that the CDC "tries to be as open and transparent as possible on all public health issues. We want to say and continue to say this issue does have concern for us and we do want to understand and help."

Not all parents are convinced. Gilmore says he does not trust the CDC, the FDA, other government agencies or pharmaceutical companies and points to medications such as Prozac, Vioxx and hormone replacement therapy, that are approved for use and then shown to have serious side effects.

Gilmore believes that autism is environmentally caused, not purely genetic. "There is a lot of talk about genetics but no meaningful research into environmental causes. Real genetic diseases like Down’s syndrome or cystic fibrosis occur at consistent rates and do not increase over time."

The autism community is a divided one—some agree with Gilmore, some are more inclined to believe in a genetic basis for the disorder, while others are open to either possibility.

Peter Bell, CEO of Cure Autism Now, says, "Our position is that we don’t know what causes autism and have not seen evidence that has been terribly convincing either way." He does say that he feels the IOM’s 2004 report was premature.

Bell is not as hard on the CDC and other government agencies. "I do think these are people just like you and me; we’re all trying to do our jobs and we’re all constrained by the resources we have. We try hard to have good working relationships and are big believers in creating partnerships. We all have the same goal and have come from thinking autism was something you couldn’t do much about to knowing that if we catch it early and provide good, sound therapies, we can change the outcome."

Alternative therapies

For some parents, sticking with traditional therapies or waiting for the possibility that the medical establishment will research and approve a promising new treatment isn’t enough. Parents at the event spoke about alternative methods such as dietary modifications and chelation therapy, a process in which drugs are administered to draw mercury and other metals out of a child’s system.

Chelation is traditionally used to treat mercury poisoning, but the theory as far as autism is concerned is that autistic individuals, perhaps because of a genetic predisposition, are unable to excrete mercury at nearly the same rate as their non-autistic counterparts.

Many of these alternative treatments do not have official medical approval and are rarely, if ever, covered by insurance, meaning parents take a leap of faith when they decide to try them.

"It’s good to hear when something works, but what may work for one person may have no impact on the next," says Roebuck, noting the importance of proving these methods scientifically.

Only time will tell if 2005 will resolve the mystery of what causes autism, whether or not government agencies and drug companies had anything to hide, if autism will get the awareness and funding it deserves or a cure will be discovered. But one thing is for sure—it looks like we’re in for an interesting year. Stay tuned.

This April will see publication of a book that’s a must-read for parents of children with autism and, for that matter, anyone concerned about our country’s public health. Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy (St. Martin’s Press, April 2005) by David Kirby explores the thimerosal debate and how a group of parents took on the government and the medical establishment in their quest to find an explanation for the rapid increase in autism.

In 2002 Kirby, a journalist and frequent contributor to The New York Times, was researching alternative autism treatments when he came across the thimerosal theory. Shortly afterward, his interest was piqued when the House of Representatives passed the Homeland Security Act, which includes a provision at the end granting Eli Lilly and other pharmaceutical behemoths immunity from liability for damages caused by thimerosal used in vaccines.

The book presents the argument of parents and researchers that CDC data from the federal vaccine database that originally found a high correlation between mercury exposure and autism was manipulated until the risk was shown to not be statistically significant.

Kirby notes that although he tried to equally present both sides of the controversy, the book is skewed to the parents’ viewpoint due to the fact that public officials were unwilling or unable to speak on the record. He notes that "evidence" should not be interpreted as "proof" and invites readers to reach their own conclusions.

He hopes the book will encourage the government and the National Institutes of Health to look into thimerosal as well as the activities of the CDC and the FDA and raise awareness of the importance of solving the mystery of rapidly increasing autism rates.

"If thimerosal is not responsible for the apparent autism epidemic in the United States, then it is incumbent upon our public health officials to mount a full-scale quest to identify the actual cause," he says. "At the very least the thimerosal debate has compelled the scientific community, however reluctantly, to consider an environmental component to the disorder, rather than looking for a purely genetic explanation. Autism, by most accounts, is epidemic. And there is no such thing as a genetic epidemic."

Kirby says that even if thimerosal is not the cause, there is still the issue of how mercury is permeating our environment. "We’re swimming in it," he says. "The EPA has established that it’s in our lakes, rivers, and the fish we eat and is much worse in areas where there is a coal-burning plant."

Hope for the future

But there are bright spots on the horizon. "I think we’re getting closer to pinpointing the causes and potential cures for autism," he says.

Richard A. Buttar, DO, vice chairman of the American Board of Clinical Metal Toxicology and Visiting Scientist at North Carlolina State University, is using a new, more aggressive chelating agent called DMPS, which Kirby says is "a sulfur-based substance and cousin of DMSA, the oral chelation treatment that most parents use on their autistic children." Children undergoing treatment have shown a remarkable improvement in behavior and cognitive skills.

Another promising treatment is giving children injections of methyl B-12, especially when combined with chelation, Kirby says. "A new study in the American Journal of Clinical Nutrition showing low levels of glutathione in autistic children is hugely signficiant in the effort to link mercury exposure to childhood disorders such as autism," he notes. "The work of Jill James of the University of Arkansas, which shows how a genetically altered metabolism can play a role in blocking the body’s ability to excrete heavy metals such as mercury, is one more piece of this complicated puzzle that is dovetailing into a workable theory."

Reprinted from Spectrum magazine, February/March 2005. Copyright© all text 2005 by Ela Schwartz