As court debates vaccine-autism link, groups are challenged in getting out accurate information
When the parents of 12-year-old Michelle Cedillo appeared in federal court this month, they asked for a precedent-setting decision that could alter much about the way America perceives routine vaccinations for their children. Cedillo suffers from severe autism, which her parents asked the court to find was caused by common childhood vaccines.
A decision in favor of Cedillo's parents could open the door for thousands of autistic children to receive compensation from a government fund set up to help people injured by the shots. Created in 1986, the federal vaccine court has paid out $750 million for vaccine injuries, but never before has it tried an autism case.
It could also have a second, possibly even greater consequence. No major scientific studies have concluded that pediatric vaccination is linked to autism. But even without the potential ruling, groups involved in vaccine awareness outreach and disease control already worry about accurate information getting into parents' hands.
"We've got plenty to worry about [already] when it comes to getting them into the clinics on time," says Amy Pisani, executive director for Every Child By Two, a nonprofit aiming to protect children from preventable disease by raising parental awareness. Pisani points out that "2.1 million children aren't being immunized on time in our country."
Even if the ruling isn't handed down, the importance of the trial has led to scores of news outlets mentioning the possibility of a vaccine-autism link despite the science refuting the possibility.
"Sound bites are the worst thing," says Pisani. "You might hear something on the preview for the news and not actually watch the story, or miss the details. It's so confusing to parents."
A number of nonprofits and governmental agencies work every year to ensure parents and guardians receive the necessary information about pediatric vaccines. Outreach campaigns have been largely successful, Pisani says, with the vast majority of American children receiving their vaccinations on time. Still, many remain concerned that recent news can muddy the water.
"If I hadn't been working here for 10 years, I'd be confused," says Trish Parnell, executive director of Parents of Kids with Infectious Diseases. "The science has been saying there's no connection, and now the science is going to court."
In recent months, a very public family spat has highlighted just how sharp the divisions within the autism community are. Recent stories, including one in The New York Times, detail former NBC chairman Bob Wright's efforts to find the cause for the disease, which affects his grandson Christian, through his charity Autism Speaks. In April, Christian's mother, Katie, appeared on The Oprah Winfrey Show and asserted that not enough was being done to discover the potential links between vaccines and the disease. The organization did not return requests for comment.
The charity later issued a blunt statement assuring volunteers and donors that Katie Wright did not speak for the family. But the divide illustrates just how personal a quest to find autism's cause can become.
Government organizations are pushing ahead with awareness outreach while the court decides. Curtis Allen, senior press officer for the Centers for Disease Control and Prevention, which holds, per the CDC Web site, that "currently available scientific evidence does not support the hypothesis that vaccines cause autism," says it's not always about providing more information, but about ensuring the information they do provide is concise and clear.
"I think many parents are confused not by a lack of information, but by too much," Allen says. "There's any number of Web sites out there. The key is they go to sites that are credible."
Allen points out that older generations may have a better understanding of the importance of vaccines because they remember outbreaks of polio and rubella. The concern, Allen says, is that parents might become complacent over vaccinations and eradicated diseases that could return to American shores.