Another new set of autism figures, another botched CDC embargo: An Embargo Watch tick-tock
From an October 2009 press release by the Association of Health Care Journalists — where I’m on the board of directors — announcing that the AHCJ was objecting to how the U.S. Centers for Disease Control and Prevention (CDC) had handled an embargo about new autism statistics:
On Oct. 2, the CDC and the NIMH held a briefing with reporters about a government study on autism prevalence. Reporters were instructed that the information released during that briefing was embargoed until Monday, Oct. 5, when a related study, also embargoed, was to be published in the journal Pediatrics.
An hour before that briefing, HHS held a telephone conference with advocates and organizations concerned with autism, releasing similar information, although with fewer details. Advocates immediately blogged about the conference and the headline news was soon posted on the Huffington Post and About.com. But even after reporters alerted Pediatrics that the news had become public, the journal refused to lift the embargo.
You can read more details about what happened here.
The incident happened a few months before Embargo Watch launched, but it helped nudge me along to start the blog. This week, a very similar story has been evolving about another new prevalence figure, this one saying one in 88 children has the diagnosis. Here’s what happened this time:
Yesterday, several autism advocacy groups ran with the one in 88 figure (thanks to Liz Ditz for bringing these to the attention of Embargo Watch.) Although the CDC had given a heads-up to at least some reporters that they would be releasing new numbers this week, but didn’t give them the specific figures. It’s unclear how the groups obtained them.
This morning, at 9 a.m. Eastern, the CDC sent out a press release labeled “immediate release:”
March 29, 2012
Contact: CDC Division of News & Electronic Media
CDC estimates 1 in 88 children in United States has been identified as having an autism spectrum disorder
CDC data help communities better serve these children
The Centers for Disease Control and Prevention estimates that 1 in 88 children in the United States has been identified as having an autism spectrum disorder (ASD), according to a new study released today that looked at 2008 data from 14 communities. Autism spectrum disorders are almost five times more common among boys than girls – with 1 in 54 boys identified.
Then, at 9:14 a.m. Eastern, they sent out the same exact release, still saying “immediate release” in the body of the text, but with this slapped on top:
**Please note that this is EMBARGOED until Noon ET today, March 29, 2012.
But by then, news organizations — including my own, Reuters — had already filed stories that were making their way through editing. So those started going online.
Meanwhile, I asked the CDC press office to clarify whether this was embargoed or not. At 9:46 a.m. Eastern, they wrote:
The embargoed time is still Noon today.
CDC News Media Branch
By 10:13 a.m. Eastern, that story had changed. The press office wrote me:
A corrected press release was sent out noting an embargo of Noon. Given the amount of coverage, the embargo has been lifted.
At 10:32 a.m. Eastern, the CDC sent an email to its press list:
**This is EMBARGOED has been lifted. There will be a telebriefing at Noon ET today.
If the only thing that had gone wrong here was what now appears to have been a mistaken 9 a.m. “immediate release,” this would be irritating and a reminder that the CDC should be more careful. These things happen, but we all make mistakes. Journalism organizations did nothing wrong by running with stories once the 9 a.m. “immediate release” email went out.
But that’s not the only thing that went wrong. The question that remains: How did the advocacy groups learn the specific figure, and under what conditions? And why didn’t the CDC lift the embargo yesterday once the numbers starting circulating?
The CDC isn’t saying, at least not in response to Embargo Watch questions. And given how similar this is to what happened in October 2009, those are the questions we need answered. Again, comments in AHCJ’s 2009 release ring true two and a half years later:
AHCJ is asking the agencies and academy to clarify embargo policies, saying that once an embargo is broken – once the news is out in any public forum, whether it’s a radio report, a public meeting, a Web site or a newspaper – the embargo must be lifted.
“This incident was disturbing to journalists around the country,” said Felice Freyer, chair of AHCJ’s Right to Know Committee. “Federal officials and a major medical journal failed to uphold their end of the deal, threatening a system based on trust. Reporters need to have faith that those who impose embargoes will play by the rules, as we do.”
Freyer said AHCJ is asking HHS for its assurance that it will apply embargoes fairly, not muzzling reporters with one hand while spreading “embargoed” news with the other.
I’ll update with anything I hear.