Mary Kay Betz had never heard of thimerosal when her son Riley was born prematurely five years ago. So she thought she was doing the right thing by agreeing that he receive early immunizations.
Now she knows too much about thimerosal, a mercury-based preservative used in the vaccines her son received, and believes it may be a significant factor in Riley’s autism. She is so convinced that she is taking on big government to make sure no more children suffer the same fate.
She is not alone. Parents around Illinois and across the country are joining in. One Springfield mom even helped create a bill that, if signed by Gov. Rod Blagojevich, will ban mercury from all vaccines in Illinois. There is not yet a federal law regarding thimerosal. (Although manufacturers agreed to phase out the mercury in routine children’s vaccines starting in 2001, some adult vaccines and influenza vaccines, including those given to kids, still contain thimerosal.)
Even though these parents believe mercury in vaccines is a prime cause of their child’s autism and other parents claim mercury is responsible for the rise in other neurological disorders such as attention deficit disorder, many doctors and scientists say they’re wrong. As evidence, they point to several major studies that have concluded over and over there is no connection between thimerosal and autism or any other neurological disorder.
New book fuels debate
The safety of vaccines is a longstanding controversy. But the debate about mercury in vaccines has grown as the number of vaccines required for children has increased. Before they reach age 2, children now need to be immunized for 11 diseases, in addition to an annual recommended influenza shot. This adds up to a total of more than 20 shots, according to the American Academy of Pediatrics.
In Illinois, immunization is not a choice if your child attends public school. You must present proof of a child’s immunizations to enroll. A family can opt out of the requirements only for a medical condition or for religious beliefs.
“You have to provide a written statement, detailing your beliefs or specific tenets,” says Tammy Leonard, spokeswoman for the Illinois Department of Public Health. “It cannot be philosophical. It cannot just be that we don’t like mercury.” The request to opt out of immunizations is then reviewed by the local school district, which has to approve the request.
Some parents say logic dictates that this large number of shots put into tiny bodies is the cause of escalating autism cases. However, public health officials say there is no scientific evidence proving the link between vaccines containing mercury preservatives and autism.
The confusion, officials say, is compounded by the timing. Some shots are given at the same time symptoms of autism in a child usually appear. And parents, desperate to find a reason for autism, link the two events.
Health officials claim no study has found a scientific link, but parents say the correct studies have yet to be done. And while no link has yet been proven, that doesn’t mean it doesn’t exist.
The debate made headlines with the April publication of the book Evidence of Harm by David Kirby (see review in, Bookshelf).
The book explores thimerosal in vaccines and whether it may be contributing to the epidemic levels of autism in America today. It started when Kirby learned about an attachment to the 2002 Homeland Security Bill, which would have exempted drug companies from liability in lawsuits regarding thimerosal.
Kirby thought the attachment odd, given the claims that thimerosal was not linked to autism. So, he began researching and met parents such as Liz Birt of Evanston, who are battling the federal government, public health agencies and drug companies to remove thimerosal from vaccines. Birt’s story and her fight with Congress are detailed in this moving book about parents of autistic children around the country who are determined to prove thimerosal caused their child’s illness.
The coverage of this book has often fallen to one extreme or the other, with some media outlets characterizing the families and their fight as desperate and misplaced while others have claimed this is a cover-up by the government.
In a June 20 article in Rolling Stone magazine, Robert F. Kennedy Jr. takes on the government’s claim that thimerosal is safe. Like Kirby, Kennedy writes that the government has known for years of the link between neurological disorders and thimerosal, yet has put more effort into covering up this information than studying the dangers. He discounts the studies done as faulty and inconclusive, claiming the Centers for Disease Control and Prevention paid to “whitewash the risks of thimerosal.”
Despite Kirby’s and Kennedy’s claims, the American Academy of Pediatrics and the CDC say no scientific study has ever found a connection between thimerosal in vaccines and autism, says Dr. Julia McMillan, a member of the academy’s Committee on Infectious Diseases and a pediatrics professor at Johns Hopkins University in Baltimore. In fact, the groups say, parents have far more to fear from the diseases the vaccines prevent than from the mercury in the shots.
“Children are hospitalized with influenza [one of the few remaining vaccines with thimerosal] at a greater rate than even senior [citizens] and they do die from it,” McMillan says.
“So, for me and the AAP, we believe the benefits are there, with vaccines.”
McMillan adds that thimerosal contains ethylmercury, a substance not proven to be severely toxic, not the deadly and better-known methylmercury.
Tracing the roots of autism
Betz’s son Riley was born with medical problems. Still, he would look into his mother’s eyes and interact with his older brother. When Riley stopped responding to her at 16 months, Betz thought he’d gone deaf. After extensive therapy, Riley was diagnosed with autism at 28 months.
Since then, Betz’s life has revolved around fighting to help her son. She has spent an equal amount of time trying to figure out why her seemingly normal child would suddenly develop autism. That search led her to thimerosal, a preservative containing almost 50 percent mercury, which was used in most pediatric vaccines for many years.
But in 1999 the American Academy of Pediatrics concluded that, as a precaution, infants’ exposure to mercury should be reduced as much as possible. As a result, the federal Public Health Service (which includes the CDC and Food and Drug Administration), the academy and vaccine manufacturers agreed thimerosal levels should be reduced or eliminated.
“Many studies show there is no risk from thimerosal. But just for the sake of ending this debate, it should be removed from the vaccines,” McMillan says.
However, thimerosal is still present in most vaccines the United States sends to Third World countries.
But Betz had never heard of the controversy surrounding thimerosal until three years ago. She had mentioned to a friend that she was taking Riley for some routine immunizations and her friend advised Betz to make sure the shots were mercury free.
Betz was confused. “I asked her, ‘Why would they put mercury in vaccines?’ ”
Betz started researching mercury and thimerosal. The more she learned, the more she believed there was a connection between Riley’s childhood immunizations and his autism.
Parents such as Betz are convinced that today’s epidemic of autism took root in the 1990s as a direct result of the government’s increase in childhood immunizations. With the additional shots, children were exposed to such high quantities of mercury, these parents believe, that today one in 166 children is diagnosed as autistic. That’s up from one in 2,500 children in 1991, according to the CDC.
Spreading the word
While Betz admits she can’t be sure mercury had a role in Riley’s autism, she says she “knows something happened to Riley after each shot.”
Many parents are further convinced by a 2004 study in which Columbia University scientists studied the effect of thimerosal on mice.
Some mice exposed to thimerosal developed severe brain disturbances and an enlarged region of the brain called the hippocampus—which has been noted in some autistic children.
These studies persuaded parents such as Betz to step up their efforts to convince others that thimerosal has harmed many children.
“I just couldn’t see this happening to any more kids, so I started telling my friends and family to be careful with vaccinations,” Betz says. “But they thought I was a goof. The people who weren’t affected by it didn’t get it.”
Undaunted, Betz joined autism organizations lobbying for accountability from the government and vaccine manufacturers. She’s part of a grass roots organization called Unlocking Autism and, as part of this group, recently took Riley to Springfield for Autism Lobbying Day.
While Betz is a relatively recent recruit to the autism wars, Liz Birt has been fighting for years. This Evanston mother of three, one of whom was diagnosed with severe autism in 1996, has spent the past six years fighting drug companies, politicians and doctors who refuse to acknowledge any connection between thimerosal and autism. Her battle has consumed her life, cost her her marriage and taken her to the top ranks of government officials and politicians responsible for children’s vaccines.
Even so, the fight is far from over.
“This is a huge government cover-up. You’re not only fighting government and bureaucrats, but also drug companies who have a lot at stake,” says Birt, one of the founders of SafeMinds (Sensible Action for Ending Mercury-Induced Neurological Disorders, www.safeminds.org). “And no one’s doing anything. We have a whole wave of kids who will age out of the schools and there’s no place for them to go. There’s no respite care, no long-term facilities. It’s a nightmare.”
Birt admits she initially didn’t know much about the science involved when a friend discussed a possible connection between mercury and autism. But she began using her skills as a lawyer to get CDC files through the Freedom of Information Act. She found documents citing a higher risk of autism in children exposed to high amounts of thimerosal in vaccines.
“In 1999, the CDC had a young guy look at thimerosal and he found 2½ times the risk [of autism] for kids who had multiple vaccines. But instead of stopping thimerosal, they kept going,” Birt says.
Since then, Birt has devoted much of her life to trying to convince Washington, D.C. politicians and officials that thimerosal is dangerous.
She says that until now, most politicians and doctors dismissed parents such as her as overwrought people looking to blame someone for their family’s troubles.
What makes Birt and Betz think people may finally listen to them? The answer: Evidence of Harm.
“We’re making a difference with this book. And with the science being published [about thimerosal’s effects], it helps people to listen,” Birt says.
Doctors: No mercury-autism link
Despite hopes that Evidence of Harm may spark change in the attitude toward thimerosal, it has yet to move the American Academy of Pediatrics.
“Nothing has changed regarding our policy on vaccinations. When we recommend vaccinations, we recommend them with all the consideration of effectiveness, side effects and appropriate time to give them,” says McMillan. “Into that consideration, there is no known risk of thimerosal as it was contained in previous vaccines.
“It’s important to think about the motives of the families who have autistic children,” McMillan continues. “This is a terrible, terrible thing to deal with and understandably you want to find an answer. But as a pediatric infectious disease expert, I’ve looked at all the articles regarding thimerosal risk and there appears to be none.”
McMillan says despite the academy’s belief that thimerosal does not harm kids, academy members did ask for vaccines without thimerosal.
While they don’t think thimerosal is harmful, they do believe all mercury exposure should be reduced whenever possible. McMillan also says if mercury in vaccines caused the rise in autism, the rate should have dropped after thimerosal was phased out of vaccines beginning in 2001. It has not, she says.
But Birt says there’s a good reason for that: “There are thimerosal-containing vaccines that are still on the market, some with shelf lives extending into 2005. So it’s way too early to see any drop in the rate of autism because the average age of diagnosis is age 4. They put the spin on it that all the thimerosal-containing vaccines are gone and that’s just not true,” she says.
McMillan disputes that. She says any thimerosal-containing vaccines would have expired by now and should no longer be used.
Birt thinks McMillian and others don’t want to acknowledge the link between thimerosal and autism because they have too much to lose.
“This is perhaps such a horrible mistake that maybe the people who did it can’t come to terms with it,” Birt says. “Everyone needs to wake up and realize what happened. If we had one in 166 kids with leukemia, it’d be on the news every night.”
Making the case in Springfield
Laura Cellini of Springfield is another mom working to change attitudes toward thimerosal and autism—one politician at a time. Major changes in Illinois laws regarding thimerosal are in the works, thanks in part to her.
Cellini was already familiar with politics—she lived in Springfield and studied political science in college. But she’d never been an activist until one of her two sons was diagnosed with autism.
“When we were affected, I became an activist. I met with legislative leaders in 2000 to propose a pilot project to enhance diagnostics for autism and better training for those working with autistic children, which has happened,” Cellini says. “They listened and they were very kind.”
This year Cellini helped with a bill, HB 511, which, if signed by the governor, would reduce the amount of mercury in all vaccines for children and adults beginning Jan. 1 and would ban mercury from all vaccinations, including influenza, by 2008.
The bill passed the Illinois House and Senate May 29 and, at press time, was awaiting the governor’s signature. Spokesman Gerardo Cardenas says the governor plans to sign it.
“We had support from all the legislators,” Cellini says. “They were determined to get a bill passed this year and we ended up with one of the best bills in the country.”
State Sen. Don Harmon (D-Oak Park) is a sponsor of the bill and a father of three children, all of whom have been vaccinated. “Whether you’re a skeptic or not [about the autism link], what possible good comes from injecting kids with a mercury-based preservative? It just doesn’t make much sense.”
But Elaine Frick of Chicago, the mother of a son with autism, thinks the pediatrics academy and government officials already know what is right. “In 1999, the Centers for Disease Control [and Prevention] and the [American Academy of Pediatrics] suggested removal of thimerosal from childhood vaccines. The Environmental Protection Agency has listed safe levels of mercury in vaccines and [the current amount] is only safe for people who weigh 500 pounds,” Frick says. “It’s time to get this done already because it’s been six years. Bush gave a written promise to Unlocking Autism to remove thimerosal and now he’s not doing it.”
Frustrated by the government’s inaction, Frick and other parents have been calling the White House, senators and representatives. Frick knows she’s only one voice, but with other Illinois parents, she thinks there’s hope for change.
“I think it’s like, every person is a little piece in a movement,” Frick says. “And it’s the force of everyone working together that will make a difference.”
Liz DeCarlo is freelance writer who lives in Darien with her husband and three children