Parikh examines media’s role in vaccine-autism link
In his latest dispatch, Salon.com contributor and pediatrician Rahul Parikih describes the media as the willing enablers of the decade of hysteria brought about by what he describes as “Dr. Andrew Wakefield’s now infamous study linking the MMR vaccine to autism.” Parikh starts by describing exactly how Wakefield artfully manipulated the media from the beginning:
The anti-vaccine hysteria, after all, began like so many other big stories: with a press conference. That’s where Andrew Wakefield first staked his claim that the MMR vaccine caused autism, according to Paul Offit’s book, “Autism’s False Prophets.” Wakefield wasn’t flanked by doctors or hospital officials but by P.R. folks he had hired himself. “One case of [autism] is too many,” he said. “It’s a moral issue for me, and I can’t support the continued use of [the MMR vaccine] until this issue has been resolved.”
The problem, of course, is that a news conference loads a gun that the media usually pulls the trigger on: Headlines like “Ban Three-in-One Jab, Doctors Urge” started rolling off the presses. While measles made a tragic resurgence, few reporters attempted to scrutinize Wakefield or his audacious claim.
Finger successfully pointed, Parikh then goes on to analyze, with the help of AHCJ member Gary Schwitzer, exactly how the media was duped. He finds that it comes down to the fact that science is pretty complicated stuff, while the news cycle is not.
Frankly, progress in science and medicine occurs much more slowly than the news cycle can tolerate. “Science,” says Schwitzer, “is like a slow winding stream. It has ebbs and flows, and twists and changes in its path that, if you don’t follow, can fool you. But too many reporters, unfortunately, like to dip their toe in the water, run back and report about it without following that river to where it leads.”
Parikh also blames the reporters’ technique of adding “balance” to a story by including opposing opinions that may come from discredited fringe elements, but adds that it’s not entirely the media’s fault.
The Lancet, one of the world’s most well-known medical publications, played an enormous role here, showing us how medical journals are at risk for their own kinds of malpractice. Offit’s “False Prophets” details how Richard Horton, then the journal’s editor in chief, seemed enamored of the notion of publishing something muckraking. As Offit writes, “By ignoring the criticisms of several reviewers, the warnings of an accompanying editorial, Wakefield’s history of holding press conferences, a British press primed for controversy, and a public distrustful of pubic health officials, Richard Horton allowed the public to question the safety of a vaccine based on flimsy, irreproducible data. The loss of the public trust that followed was entirely predictable.”
Parikh ends his piece on a positive note, praising Brian Deer’s investigations into Wakefield’s research in The Sunday Times (of London).
CDC: Nearly 1 percent of U.S. kids have autism
An average of one in 110 children have an autism spectrum disorder, according to a new study of the health and education records of 8 percent of 8-year-old children in the United States. In its release, the CDC says “These results reflect data collected in multiple communities throughout the U.S. from 2006 showing an estimated prevalence of ASDs to be about one percent of 8-year-olds in the U.S.”
The study, from the CDC’s Autism and Developmental Disabilities Monitoring Network, looked at the records of 307,790 children in 11 study sites and identified 2,757 with an autism spectrum disorder. ASD prevalence was higher in boys than in girls and varied by race and ethnicity. The study also found that the overall prevalence of ASD has increased since earlier studies.
“These results indicate an increased prevalence of identified ASDs among U.S. children aged 8 years and underscore the need to regard ASDs as an urgent public health concern.” In the report, the CDC acknowledges the need to “understand how complex genetic and environmental factors interact to result in the symptoms which make up the autism spectrum.”
The CDC reports that, based on its examination of the records, most children with an ASD are getting special education services in the public schools, though not all were categorized as having an ASD. Other reasons for them receiving special education included specific learning disabilities, speech and language impairments, other health impairments and intellectual disabilities.
Interestingly, the Age of Autism blog reported the news from this study as early as Wednesday, despite the CDC’s embargo that didn’t lift until noon Eastern time on Friday, bringing to mind earlier questions about embargoes. More about that here.
Media briefing
The CDC is having a telephone-only briefing with Catherine Rice, Ph.D., a behavioral health scientist with the National Center on Birth Defects and Developmental Disabilities, to discuss the data at noon Eastern time. The briefing will be available via listen-only audio web site. The CDC will make a transcript of the briefing available on its Web site.
Autism news raises question: When is an embargo not an embargo?
Filed under: Government, Health journalism, Hot Health Headline, Public records, Studies
Are embargoes yet another quaint tradition that, like so many before them, has been pushed into obsolescence by the weight of the Internet? Do so many people have access to so much information they can share so easily that artificial restrictions on publication are meaningless?
Consider: In a Friday press conference, the Department of Health and Human Services discussed, under embargo, highly newsworthy data indicating a much higher than expected prevalence of autism in the United States. HHS didn’t mention, however, that in an earlier call it had already given the most newsworthy part of that information to members of the “autism community,” and had not restricted them from publishing the info. The incident raises serious questions about giving special interests privileged access to data at the expense of major media outlets, as well as the validity of embargoes in an era of increasing media fluidity.
Routine embargo?
Friday, at 3 p.m., HHS held a press conference announcing (among other things) that according to a CDC study, the prevalence of autism spectrum disorders, previously thought to be about 1 in every 150 children, is actually closer to 1 in every 100 children. This news, big enough that it led Monday’s health coverage, was embargoed until Monday because it reached conclusions similar to Health Resources and Services Administration (HRSA) findings that would be published in the journal Pediatrics that day.
There is some confusion as to where the embargo originated, as a Pediatrics representative said the journal only enforced an embargo of the HRSA study, and that anybody could have published the results of the CDC study. We are still awaiting a CDC response and more information from AAP, but have talked to representatives of the National Institute of Mental Health (NIMH) and this much, at least, is clear: As applied, the embargo covered both studies and every bit of data released to journalists. It was not, however, applied to information about the CDC study released in the autism community call.
“Both the CDC overview and the HRSA study were embargoed, because the subject nature was obviously so similar,” NIMH spokesman Jim McElroy said. “It just wouldn’t be appropriate to not have the CDC following the same set of guidelines as the HRSA study as it relates to the embargo.”
Special access for special interests
The 2 p.m. autism community call, a hastily organized affair for which invitations went out just hours beforehand, featured a brief appearance by HHS Secretary Kathleen Sebelius and gave autism advocates a broad overview of the CDC study, McElroy said. Because few specifics were discussed, the study’s broad conclusion (that the prevalence of autism spectrum disorders was now thought to be nearer to 1 in 100 children) was not under embargo.
McElroy again:
“The embargo was not in place for the advocacy groups but that’s why it was a far more general overview approach on the part of NIMH, HRSA and CDC… whereas with media it was clearly understood that an embargo was in place so media had the opportunity to ask questions.”
“The advocacy groups are very different by nature.. from media outlets whose job is to disseminate information. It’s two very different audiences and that’s why the embargo certainly is in place.”
In other words, the autism community got less information, but they were allowed to do as they pleased with what they got. The media, on the other hand, got much more information, but were not allowed to publish any of it, not even that part which had been given to the autism community without restrictions.
Autism advocates run with the news
Those on the “autism community” call wasted no time in running with the info they’d learned. For example, Dan Olmsted immediately posted the key stat on Age of Autism, and David Kirby posted a more thorough breakdown on Age of Autism and The Huffington Post soon after. About.com also posted the data (with a reference to the Pediatrics article, even), though it seems to have been taken down since (It’s still indexed in Google news).
Adventures in Autism blogger Ginger Taylor joined the call as well; her Friday post reveals a few key facts about the discussion.
“The conference call was not announced to the press or public, but merely in an e-mail sent out at 9 a.m. inviting around 50 people in the autism community (almost exclusively friendly to the administration) to the 2 p.m. call with a ’sorry for the short notice,’” Taylor wrote.
Journal doesn’t budge
Meanwhile, Pediatrics didn’t drop the embargo. In a brief call Tuesday morning Susan Martin, American Academy of Pediatrics’ director of media relations, said that stories like the Age of Autism and Huffington Post pieces hadn’t broken Pediatrics‘ embargo because they only reported on the similar study to be published by the CDC, and not specifically on the journal’s embargoed article, “Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007.” Martin did acknowledge that About.com had broken the embargo.
Readers take “tardy” media to task
The comments on Kirby’s Huffington Post entry show just how much of a debacle the embargo was for major media outlets. Readers didn’t understand the media’s hands were tied, they just knew that major outlets weren’t reporting on what looked like big news. Here are the most telling entries:
“Thanks to HuffPo for covering the autism issues that are being ignored by so many.”
–Theresa Conrick (Oct. 4)
“I sent this link to all TV news stations in our viewing area,both newspapers and the most popular Newstalk..…silence.”
–KFuller (Oct. 4)
“Stakeholders are just crying this weekend that no news source picked up this story. Thank you from the bottom of my heart Huffington Post and David Kirby.”
–TannersDad (Oct. 4)
The fallout: Do embargoes work anymore?
In the case of the bungled HHS autism release, mainstream outlets with explicit standards and institutional policies were hamstrung while less-established outlets nimbly skipped out front of a major story. It’s a somewhat unique situation that underscores the growing weakness of the embargo process.
Do embargoes work when they don’t apply to everyone equally? What about when they’re not followed by everyone? Is it “good enough” to keep mainstream media off the news while it multiplies with impunity throughout the blogosphere?
A related consideration: How big must an embargo-breaker be before everyone else follows suit? About.com, for example, gets more American traffic than any media outlet but CNN, ESPN and The New York Times and is the 27th most popular site among American Web users. It’s even owned by The New York Times Company, though the independently contracted “guide” who posted the news wasn’t under the control of the Times‘ editorial staff, of course. Despite all that, About.com still wasn’t considered influential enough to have killed the embargo.
Everybody needs to be under the same rules
AHCJ president and ProPublica senior reporter Charles Ornstein said that “If they’re going to be sharing information, it should be shared with the premise that everybody’s under the same rules.”
“I think it’s unfair to hold an embargoed briefing for the media and a non-embargoed briefing for advocates,” Ornstein said. “In a way, I think this punishes the media for abiding by embargoes in an era where information is easily shared by blog posts and by Twitter. When information enters the public domain, embargoes should be lifted.”
“While many people believe that embargoes play a vital role, events like this should cause us to make sure they’re fair to the media, and, even more than that, ask whether they help or hinder the process of conveying information to our readers, viewers and listeners,” Ornstein said.
UPDATE: Pediatrics explains why they didn’t lift embargo
Having made clear that the organization’s embargo only extended to the HRSA study, and not the CDC study discussed on the autism community call, the AAP’s Susan Martin provided AHCJ with the following statement:
The American Academy of Pediatrics (AAP) was notified of an embargo break by About.com on Saturday, Oct. 3, by a journalist for another news organization. The AAP evaluates embargo breaks on a case-by-case basis. In the About.com case, the AAP denied a request to lift the embargo early. Lifting the embargo over the weekend would have only added to the confusion, especially as the About.com post was removed as soon as the reporter learned she had broken the embargo, and many journalists had scheduled their news reports on the study to run Monday, Oct. 5.
In a similar vein, the just-distributed Pediatrics‘ media mailing for the Oct. 12 issue contained an “Editor’s Note” laying out the terms of AAP embargoes and reminding journalists of the sanctions the academy can impose upon outlets who violate those guidelines. The note also reminds folks that “Any decision to lift an embargo early is at the sole discretion of the AAP.”
UPDATE: CDC says no numbers were given to advocates
CDC spokeswoman Artealia Gilliard told AHCJ on Tuesday afternoon that everything in the 3 p.m. press call was under embargo, while nothing that would have been covered by that embargo was mentioned in the earlier call with the autism community. In particular, Gilliard said, no specific prevalence rate numbers were given out on the call.
“We basically said ‘On Monday, two studies will come out. They will update the prevalence estimate we previously had.’ … It didn’t actually have any of the information that was embargoed.”
Gilliard, who was on both calls, specified further: “I know they didn’t put out numbers in the advocacy call. I know we didn’t say 1 in 100. What we’ve been saying is ‘approximately 1 percent of children.’”
The difference between “1 in 100″ and “approximately 1 percent” is up for debate, but via e-mail, Adventures in Autism blogger Ginger Taylor outlined exactly how she and other autism-community bloggers were able to report the numbers without sitting in on the embargoed call: They’ve known them for a while.
Taylor first noted rumors of the new rate in a July blog post, David Kirby confirmed the rate and published conclusions of both the HRSA and CDC studies on the Huffington Post in August, and Tina Cruz noticed relevant changes to the CDC site late last month. So, even if the phrase “1 in 100″ was never uttered, those in the know were quick to connect the dots. Kirby confirmed this via e-mail, here’s an excerpt:
According to my notes for the community call, this is what Dr. Insel said:
“Preliminary analyses indicate an increase in estimated prevalence, to around 1% of children affected.”
1%, obviously, is 1 in 100.
Cruz also notes in the comments on this post that she noticed changes to the numbers on the CDC’s Web site.
So, while the cat may already have been out of the bag, the CDC did not release embargoed information on the autism call because, Gilliard said, “There’s no such thing as embargo with the general public. The only people who respect embargoes are journalists.”
In the autism advocate call, Gilliard said the CDC carefully walked the line between respecting Pediatrics‘ embargo and alerting parents and advocates to the upcoming changes as soon as possible.
Autism and vaccines: A failure to communicate
When it comes to vaccine safety, findings that scientists regard as proven facts haven’t been strong enough to shake public suspicion about a link between childhood immunizations and autism.
Photo by slideshow bob via Flickr
One in four Americans still believes vaccines cause autism, notes an exhaustive and fascinating analysis of the enduring controversy over vaccine risk published by PLoS Biology. An unfortunate fact is now indisputable: As parents shun vaccines, infectious diseases ranging from measles to whooping cough have mounted a comeback.
Medical anthropologist Sharon Kaufman finds profound meaning in the persistence of belief in the vaccine-autism theory. To her, the PLoS article says, the problem illustrates a broader, profound erosion of trust in experts. “People think if you blindly follow experts, you’re not taking personal responsibility,” Kaufman says.
The media is part of the story, says one of the world’s foremost vaccine experts. Paul Offit, chief of infectious diseases at Children’s Hospital of Philadelphia, tells PLoS the vaccine myth is kept alive in part by the “journalistic mantra of ‘balance,’ ” when science supports only one side.
Tribune: Lupron to treat autism is ‘junk science’
Filed under: Hot Health Headline, Pharmaceuticals
The Chicago Tribune’s Trine Tsouderos reports on the growing use of Lupron, a drug sometimes used to chemically castrate sex offenders, to treat autism in children. The practice’s proponents, a father and son duo with clinics across the country, call it a “miracle drug.” Mainstream scientists are not convinced. Tsouderos chronicles their ire:
Four of the world’s top pediatric endocrinologists told the Tribune that the Lupron protocol is baseless, supported only by junk science. More than two dozen prominent endocrinologists dismissed the treatment earlier this year in a paper published online by the journal Pediatrics.
The story includes warnings that the drug can “disrupt normal development, interfering with natural puberty and potentially putting children’s heart and bones at risk,” according to experts in childhood hormones. The treatment involves regular, painful shots.
Tsouderos pulls no punches — in the story the Lupron treatment is referred to as “junk medicine” that spreads “false hope” — and takes on several alternative treatments and theories surrounding autism, including links with mercury or vaccination. In addition to interviewing disapproving scientists, she also details the marketing practices of the doctors behind the Lupron treatment and questions their success stories.
Anger at radio host shapes autism performance
Writing for The Women’s Media Center, Emily Wilson tells how a mother’s outrage over conservative talk radio host Michael Savage’s comments on autism shaped the one-woman performance “Confessions of a Refrigerator Mother” she is giving in San Francisco.
Michael Savage, a San Francisco-based host known for railing against “hippies, communists and perverts,” labeled children with autism “brats” whose fathers need to tell them: “Don’t act like a moron.” After hearing of the remarks secondhand, Carolyn Doyle attempted to get Savage taken off the air and even contacted the radio personality directly.
Doyle decided to put that anger at Savage and his remarks into a show she was developing at the Marsh Theater in San Francisco, Confessions of a Refrigerator Mother, about daily life in her family with Joaquin (her son, who suffers from severe autism), her daughter Amelia and her husband Leo. The show plays through April, which is Autism Awareness Month.
“Michael Savage made me feel marginalized,” she says. “And I didn’t want to feel marginalized.”
Doyle says her show includes a humor and a personal perspective aimed at changing public perceptions of autism.
CDC working to uncover cause of autism
This is a guest post from Elizabeth Fernandez of the San Francisco Chronicle. Fernandez is among the first class of AHCJ-CDC Health Journalism Fellows who are spending the week studying public health issues at two Atlanta campuses of the Centers for Disease Control and Prevention.
Amid a seeming explosion nationally in rates of autism, advances are emerging in science’s understanding of the illness, but no cause has yet been found to explain the profoundly puzzling disorder, a government researcher said Thursday in Atlanta.
Multiple causes — a combination of complex genetic and environmental interactions — are likely responsible, said Catherine Rice, Ph.D., of the Centers for Disease Control and Prevention’s National Center for Birth Defects and Developmental Disabilities.
Marshall Allen, of the Las Vegas Sun, asks Catherine Rice if the prevalence of autism is increasing or just more easily diagnosed. (Photo: Christy Stretz)
Vaccines have become the focus of concern in recent years among some parents as a possible trigger, but studies generally have found no connection between the two, Rice said.
“There is a strong genetic component, but genes don’t explain everything,” she said.
Autism Spectrum Disorder is the term for a variety of developmental disorders including autism, atypical autism, Asperger’s disorder, and Rett Syndrome — Rett alone has a biologic confirming test.
An estimated 560,000 youths in the U.S. have the disorder. It’s far more prevalent among boys: three to seven boys are affected with the illness for every girl with autism.
“Our best estimate is 1 in 150 or 6-7 per 1,000 children have autism,” Rice said.
Despite a hike in rates over the past quarter-century, attributed to better assessment tools and to a broadening of the diagnostic category, researchers are “more concerned that children are being under-identified than over-identified,” Rice said. She expects a “leveling off” in rates over the next 12 years.
The disorder typically begins to unfold during the first two years of life, often noticed through a lack of interest in interacting with family. The child may engage in repetitious play behavior, may not respond to the parents’ voice “but would respond to, say, the opening of the refrigerator,” Rice said.
By age three, the disorder becomes much more evident. The median age of formal diagnosis is between 4½ and 5½.
Some children with autism have a wide range of impairments; they may have ADHD or self-injurious behaviors. Some children become overwhelmed by sounds, sights, smells. They may suffer from gastrointestinal problems, food sensitivities and sleeping disorders. Preoccupied within their “own world,” some children lack a sense of safety, and may wander into streets or other hazards.
“Children can have a lot of frustration because of their difficulty communicating,” Rice said. “It’s a lifelong disorder. We consider autism an urgent public health concern.”
Newspaper: Landmark autism study used fixed data
An investigation by the Times of London finds that “The doctor who sparked the scare over the safety of the MMR vaccine for children changed and misreported results in his research, creating the appearance of a possible link with autism.”
Andrew Wakefield’s research was published in The Lancet in 1998 and involved just 12 children. However, once it was published, the paper reports that rates of inoculation fell from 92 percent to below 80 percent.
The Times‘ investigation, which it says has been confirmed by evidence presented to the General Medical Council:
“In evidence presented to the GMC, however, there has emerged potential explanations of how Wakefield was able to obtain the results he did. This evidence, combined with unprecedented access to medical records, a mass of confidential documents and cooperation from parents during an investigation by this newspaper, has shown the selective reporting and changes to findings that allowed a link between MMR and autism to be asserted.”
Review finds no link between vaccines, autism
A review of 20 studies has concluded that there is no link between vaccines and autism. The review, “Vaccines and Autism: A Tale of Shifting Hypotheses,” is published in the Feb. 15 issue of Clinical Infectious Diseases.
In an invited article (PDF), Jeffrey S. Gerber and Paul A. Offit, Division of Infectious Diseases, The Children’s Hospital of Philadelphia, report that:
“Twenty epidemiologic studies have shown that neither thimerosal nor MMR vaccine causes autism. These studies have been performed in several countries by many different investigators who have employed a multitude of epidemiologic and statistical methods. The large size of the studied populations has afforded a level of statistical power sufficient to detect even rare associations.”
The review looked at three common theories about how vaccines are linked to autism:
- the combination measles-mumps-rubella vaccine causes autism by damaging the intestinal lining, which allows the entrance of encephalopathic proteins
- thimerosal, an ethylmercury-containing preservative in some vaccines, is toxic to the central nervous system
- the simultaneous administration of multiple vaccines overwhelms or weakens the immune system
Offit says that fears about vaccines are pushing down immunization rates and having a real impact on public health. “Parents should realize that a choice not to get a vaccine is not a risk-free choice. It’s just a choice to take a different, and far more serious, risk.”
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