Fear and misreporting in the vaccine wars

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NEW YORK (Reuters Health) - Kelly Lacek thought her three-year-old son, Matthew, seemed a little off that day in 2006.

First, he complained of a sore throat. Then came a high fever and difficulty breathing. Soon, he was struggling to survive.

Matthew had contracted a deadly bacterial disease known as Haemophilus influenzae type b, or Hib, something that kids usually get a vaccine for, and that hundreds used to die from every year.

It suddenly dawned on Lacek that her decision to start skipping Matthew's shots, after hearing that vaccines were dangerous, might not have been a good idea.

"Choosing to not vaccinate your child is not a risk-free proposition, as any of these parents can tell you," says Seth Mnookin, 38, author of the new book, The Panic Virus: A True Story of Medicine, Science and Fear (Simon & Schuster, January 11, 2011).

The fear that followed British doctor Andrew Wakefield's paper on the supposed link between autism and vaccines was the topic of discussion this week, when Reuters Health executive editor Dr. Ivan Oransky spoke to Mnookin about his book, what went wrong in the media's coverage and how to avoid it in the future. (See live-blogging from the conversation at http://bit.ly/fm8dtd.)

"If you wanted to point to one moment that started the narrative that we're still having today about vaccines and their supposed connection to developmental disorders, that would be the moment," Mnookin says.


Wakefield's 1998 paper specifically spoke of a link between autism and the combined MMR (measles, mumps, and rubella) vaccine. In the press conference that followed, he translated this into something that parents could really understand.

"He said that he recommended that parents split up the MMR vaccine and not take any chances," says Mnookin.

The day after the press release, there were stories in the UK press that talked about a doctor who advised against the MMR vaccine. The separated vaccines weren't available, so parents stopped getting them for their kids instead of putting them at an alleged increased risk of autism.

Absent from most media stories, however, were a number of scientists, some in the same issue of the Lancet as Wakefield's study, who pointed out the numerous problems with the study.

Adding to the problem, says Mnookin, was the amount of attention given to celebrities such as Jenny McCarthy, who based her opinions on her own experience with an autistic child, and not scientific evidence.

"Time after time she was given venues to put out this message, without any opposing views, without the opportunity for public health officials or doctors to adequately explain what was going on and why her theories, which she said she got from 'the university of Google,' were not accurate or reliable," Mnookin says.

And those media outlets who countered that they were just reporting what people said are guilty of misleading the public, he says.

"The media had really irresponsible reporting all the way through," Mnookin says.


Scientists and doctors are still feeling the effects of Wakefield's 1998 paper. It was just last year that the Lancet retracted it, and that Wakefield lost his UK doctor's license.

This month, the British Medical Journal called the paper fraudulent, and Salon.com - after reviewing Mnookin's book - retracted a 2005 piece by Robert F. Kennedy Jr. saying that vaccines were dangerous.

And while these corrections are important, they don't fix the original problem, says Mnookin: the media should have been much more careful about a paper that stood on scientifically shaky ground in the first place.

Talking to outside experts would have also helped put the paper in perspective, he says. The Lancet has been pointing out for years that Wakefield's interpretation of the study and what the study actually said were two different things.

"The story that you should have had right off the bat is 'what is the doctor doing saying this when all he's doing is working off a case study of twelve people,'" Mnookin says, a number considered too small for researchers to draw any meaningful conclusions.

Scientists also need to be more careful of how they present information to the public, Mnookin says. For example, if there's a situation where say, 90 percent of data points to one conclusion, people are going to focus on that remaining ten percent, and use that to claim that what the scientists are saying isn't true.

"One big lesson we can learn from this is there is a concern on part of scientists. The public is unable to understand the nuances of what they do," he says.


Part of the reason that people are so scared is that we know very little about autism, Mnookin points out. The rates of this disorder are on the rise, but nobody knows why. In contrast, diseases that were once common like measles and polio now seem less scary, because we've lost our familiarity with them.

This makes parents see not getting their kids vaccinated as less of a risk, Mnookin says.

"People in our generation have likely not had contact with someone living in an iron lung because they were infected with polio," he explains. "By definition, if you're alive today, you didn't die of a measles or whooping cough infection."

As a new parent himself, Mnookin says he understands these fears, and he feels for the families that think their children have been hurt by vaccines.

Mnookin says it's unfortunate that the vaccine wars have often been set up as a struggle between families who feel that their children were harmed and the public health community.

"It has really not allowed families and advocates for families with a family member affected by autism to find common ground about things that they can all agree are needed," he says.

When Wakefield suggested that there was a link between vaccines and autism, he really scared people, says Mnookin. And it's understandable why parents were scared, since they just wanted to protect their kids.

One of those scared people was Kelly Lacek, whose son Matthew eventually recovered. But not before his harrowing experience with Hib.

"All of these families are coming from a place of good faith," says Mnookin. "They fully believe that (vaccines caused their kids' autism), and I cannot say what my reaction would be if I were in their position. I have no idea what I would feel."
