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FOIA request to CDC took five years to fulfill

The Centers for Disease Control and Prevention considers itself to be one of the nation’s foremost scientific institutions, dedicated to transparency and evidence-driven policies.  It is fair, therefore, to ask this question: What happens when the CDC brazenly ignores the Freedom of Information Act (FOIA), taking more than five years to fulfill a journalist’s information request, which by law should take “approximately a month”?

Speaking from experience — absolutely nothing.

In July 2007, I submitted a simple request for emails and resumes from three CDC employees. This information was needed for background research associated with the Lyme disease documentary, Under Our Skin.

For five years the agency strung me along with frivolous denials, mysterious delays, shifting explanations and false promises. In essence, the delays became an improper, off-the-books FOIA denial.

Related investigation
The CDC documents, which took five years to obtain via FOIA, were part of an investigation published this weekend in The Poughkeepsie Journal:

Yet no one in the CDC FOIA office went to jail. And no one was fired or reprimanded.

The delays were variously attributed to understaffing, year-end deadlines, and people taking vacation. At one point, unanswered calls were blamed on a phone “dead zone” in the CDC’s new FOIA office. For years I was told that my request was at the top of the FOIA queue, and that it was on the verge of being processed.

In 2009, I realized that the CDC was tracking the progress of the film. I also obtained an email that showed that a CDC Press Officer, Christine Pearson, made an intimidating call to our public television distributor, Gayle Loeber at the National Educational Telecommunications Association, telling her that the CDC was concerned about the film’s content.

I redoubled my efforts to dislodge the FOIA request. My congressperson sent several letters to the CDC. The film’s director wrote a letter to President Obama. The FOIA ombudsman, the Office of Government Information Services (OGIS), repeatedly pressured the agency to fulfill my request. I published blogs about my plight and enlisted the support of a number of government transparency organizations.

Yet my FOIA request was in “final review” for over a year, and among the agency’s top ten oldest unfulfilled requests from 2010 to October 2012. Eventually the documentary was completed without answering an important question — were the three key CDC employees responsible for managing Lyme disease health policy being inappropriately influenced by outside commercial interests?

Finally, after receipt of the 3,000 FOIA pages — long after they were needed — I understood why the CDC wanted to keep us in the dark.

The emails reveal a disturbing picture of a shadow group that has been setting Lyme disease policy and a national research agenda without public oversight or transparency. Investigative journalist Mary Beth Pfeiffer of the Poughkeepsie Journal was given access to these hidden emails, and on May 19 she published an article about this group’s abuse of power.

This group regularly convened online and during government-funded, closed-door meetings, with agendas being driven by academic researchers with significant commercial interests in Lyme disease tests and vaccines. Subsequently, a large percentage of government grants were awarded to group members.

Part of the group’s stated mission was to run a covert “disinformation war” and a “socio-political offensive” to discredit Lyme patients, physicians, and journalists who questioned the group’s research and motives. They exerted pressure on a state health department to launch an investigation into a competitor’s lab. They covertly co-wrote a medical journal article with a psychologist to create the appearance of scientific consensus supporting the  group’s premise that Lyme patients with lingering symptoms may be suffering from psychological problems, rather than a persistent infection. Within the FOIA emails, Lyme patients and their treating physicians were called “loonies” and “quacks.”

Bottom line: What this FOIA request reveals is a top-to-bottom culture of disdain for the FOIA law, for open scientific debate and for the public that these government employees are supposed to be serving.

The Freedom of Information Act was designed to “ensure an informed citizenry, vital to the functioning of a democratic society, needed to check against corruption and to hold the governors accountable to the governed.” But this law is worthless if government employees suffer no consequences for it. The CDC’s FOIA delay tactics were extremely effective in avoiding this negative publicity, as Under Our Skin made its way to film festivals, theaters, the Academy Award shortlist, and finally, public television.

When a government agency such as the CDC fails to provide this transparency, they dismantle the checks against corruption. Agency employees might be influenced by any number of temptations, from the prestige of publication in top-notch medical journals, to lucrative outside consulting jobs. My FOIA request represents a monumental failure of this act as administered by the CDC, and Americans will suffer if we don’t demand better from the government in the future.

Kris Newby can be reached at krisnewby@comcast.netLorraine Johnson can be reached at
CDC Lyme Disease Cases: 1982 to 2012

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