Autism news raises question: When is an embargo not an embargo?

Andrew Van Dam

About Andrew Van Dam

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism, and he has blogged for Covering Health ever since.

Are embargoes yet another quaint tradition that, like so many before it, 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.

23 thoughts on “Autism news raises question: When is an embargo not an embargo?

  1. Tina Cruz

    I am a blogger who has 3 autistic children and I am also LA Special Needs Kids Examiner at Examiner.com. I was one of the first to break the story of the CDC revised numbers, On September 29. At the time, I was not aware of a news embargo, but I followed the evidence and found that the numbers had been changed on the CDC website without any corresponding announcement. I wrote an article about it, and received a lot of response to it.

    http://www.examiner.com/x-9121-LA-Special-Needs-Kids-Examiner~y2009m9d26-CDC-quietly-revises-autism-numbers-to-1-of-US-children

    Tina Cruz

  2. Sullivan

    “The comments on Kirby’s Huffington Post entry show just how much of a debacle the embargo was for major media outlets.”

    David Kirby fanned the flames of conspiracy by introducing his piece with a statement that the government held the briefing on Friday in order to bury the news.

    He further implied that the subject got short shrift, in that the call was only 39 minutes long.

    I read the about.com piece when it was up. Lisa Jo Rudy commented that since David Kirby and Dan Olmsted had broken the embargo, it seemed OK to go forward. She discussed the Pediatrics paper, clearly breaking the embargo. Kirby and Olmsted avoided details of the paper, skirting the issue, while creating the image that the media was ignoring the story.

    The entire story is somewhat more complex

    The existence of the two studies along with details (the one now published in Pediatrics and the CDC’s upcoming MMWR) were leaked to Lee Grossman of the Autism Society of America by someone at CDC. Mr. Grossman informed David Kirby of the details and Mr. Kirby blogged them (this was in August).

    So, David Kirby was taking advantage of a situation that he, himself, helped to create.

  3. AutismNewsBeat

    AHCJ, please note:

    David Kirby is a publicist for a fringe anti-vaccine interest group, Generation Rescue. He is not acting as a disinterested reporter, and is most certainly not an accurate source of information.

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  5. Sullivan

    This is a long and rather messy story. I’ve put the details as best as I can here: http://leftbrainrightbrain.co.uk/?p=3288

    In the end, I don’t think that David Kirby had that much of an impact on the story. No one really picked up his spin.

    What he did do was give autism advocates a black eye. Pretty sad, considering he isn’t an autism advocate. He’s a PR man for a group of organizations that promote the now defunct idea that vaccines caused an autism epidemic.

  6. bensmyson

    Curious how all this has turned into a David Kirby bashing. Last I checked about.com technically broke this story and about.com is owned by the NYT. Does David Kirby work for the NYT?

    And when 1 out of 100 kids are diagnosed with autism that’s news, big news to some people. Others may have missed that story to the day’s lead, doctors squirting live vaccines up their snouts to save millions of lives from this winter’s swine flu plandemic.

  7. Joanna

    you say “[Kirby] is not acting as a disinterested reporter, and is most certainly not an accurate source of information.”

    Um, wasn’t the info he reported – the “new” autism number – accurate?

  8. Terri Lewis

    Vaccines do cause autism (brain, gut and immune system damage), as the federal government has conceded since the introduction of vaccines.

    They just use the phrases “very rare” and “brain damage” rather than “God only knows how many because we deny it when it happens” and “autism.”

    The only thing left to figure out is whether some, many, or most of the cases of autism we see today are caused by our outrageous vaccination practices.

    Embargo, shmembargo–let’s discuss the issue, which is that we now have 1 in every 100 American kids moderately to severely brain damaged (and with other systemic damage).

    Where the heck have the real journalists been?

  9. Sullivan

    “Does David Kirby work for the NYT? ”

    Ironic you should ask.

    No, he does not. However, he has pretend to be working for the NYT while trying to get information from the CDC. Check Autism’s False Prophets, page 151.

    Joanna,

    David Kirby is most certainly not a disinterested reporter. He has his reputation on the line for writing a book that promotes the now debunked idea that thimerosal causes autism. It is unclear what his financial affiliation is with Generation Rescue or their blog. It is unclear who paid for his trip to the UK and to Washington to “brief” lawmakers on his debunked idea.

    David Kirby went on national TV and told the public that since he hasn’t seen any autistics on the subway or in his neighborhood, there must not be any autistic adults. Yeah, the former travel writer is now diagnosing the people on the subway and doing epidemiology based on that. He is irresponsible, and has been for years.

  10. Pia ChristensenPia Christensen

    Thanks for all the comments, folks.

    I’d like to get this discussion back on topic now. The point of this post and the central question concerns embargoing news for a specific date – and whether the tradition still works in a 24/7 Internet environment.

    If you have constructive comments about embargoes, we look forward to your contribution to the conversation.

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  13. Sullivan

    Pia Christensen,

    is it possible to keep an embargo? Yes. I just think sources need to be careful of who is allowed the privileged information.

    For example, SafeMinds appears to be breaking an embargo right now with

    http://www.ageofautism.com/2009/12/-cdc-brings-bad-tidings-40000-children-diagnosed-with-autism-in-this-year-alone.html

    and

    http://www.ageofautism.com/2009/12/cdc-study-expected-to-announce-1-in-100-autism-ratea-startling-50-jump-in-just-.html

    If SafeMinds is correct, the CDC are about to make an announcement. SafeMinds appears to want to be first with the news, embargo or no.

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