On June 26, 2007, we, the producers of the documentary, “Under Our Skin,” submitted a Freedom of Information Act (FOIA) request to investigate possible conflicts-of-interest of three Centers for Disease Control (CDC) employees who control public health policy for Lyme disease. Almost four years later, we’re still waiting for this information, and we’ve just learned that our request is among the ten oldest unfulfilled requests awaiting action at the CDC’s parent agency, the Department of Health and Human Services (HHS).

(Click on the image below to see the timeline.)

The Freedom of Information Act (FOIA) is a federal law that establishes the public’s right to obtain information from federal government agencies. The basic purpose of FOIA is 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.”

For the purposes of our documentary, this FOIA request is essential in answering some of the most puzzling questions surrounding Lyme disease — why has the CDC been endorsing an outdated symptom list and unreliable testing protocol on their website? Why has the CDC been underreporting Lyme cases for the last decade? Are these CDC employees really working in the interest of the tax-paying public or are they being influenced by hidden commercial influences?

Communicating the government’s point-of-view in our film was a top priority, but lack of cooperation and transparency by the organizations in charge of setting Lyme disease policy in the U.S. made this virtually impossible.

At a 2005 infectious disease conference, the director of the CDC Lyme disease group, Lyle Petersen, MD, MPH, refused to speak with us on or off camera. “Talk to media relations,” he said angrily.

When we called the National Institutes of Health to request an interview with a tick-borne disease expert, the media relations person told us, “We can only let you interview our experts if you have a broadcast date for your film.”

I explained, “But we can’t get a broadcast date for our film until we have a film to show the broadcasters.”

“Sorry, we can’t help you,” the media handler replied.

Undaunted, we flew a crew to the Montana home of retired NIH Lyme disease expert, Willy Burgdorfer, Ph.D., M.D., the discoverer of the Lyme bacterium. While setting up the cameras, an NIH representative showed up uninvited, and said, “I’ve been told that I need to supervise this interview. This comes from the highest levels. There are things that Willy can’t talk about.”

That left a FOIA request as the next logical step in trying to understand the government’s reluctance to talk about Lyme disease.

So, why has our FOIA request been stuck in the system for years?

We honestly don’t know.

Initially we were told that our request for three resumes and some email records would cost $27,515 out-of-pocket, because whomever handled our request mistakenly decided that our educational film production company was a “for-profit commercial interest” that “does not publish current news of current interest to the general public.” It didn’t matter that our appeal showed that we were granted status as a non-profit 501 (c) (3) documentary producer in 2005, or that we had a website that proved that we had produced a number of educational medical films on AIDS, cancer, and dystonia.

Our request, still under appeal, has been stuck in some dark drawer in HHS or CDC, and we don’t know when — or if — it will ever be answered.

Along the way, we’ve been told that the delays are due to understaffing, year-end financial deadlines, and people taking vacation. We’ve been told that our calls remain unanswered because there’s a phone “dead zone” in the new CDC FOIA office in Atlanta. Several times we’ve been told that we’re at the top of the FOIA queue, and that our request is on the verge of being handled. When we had the president of a D.C. Lyme disease foundation ask a visiting CDC representative, Ben Beard, Chief of Bacteriology and the Lyme disease program, about our FOIA request, he said, “It is our policy not to respond to such letters. We consider the accusations in that FOIA to be slanderous.”

This week — 3 years and 8 months after our original FOIA filing — we received the first glimmer of hope in the FOIA process. The good news: HHS assures us that there will be a ruling on our appeal and fee waiver within the next six weeks. The bad news: HHS has no idea how long it will take the CDC to send us the requested files once our FOIA request leaves the appeals desk.

In the meantime, Lyme disease continues to grow at an alarming rate, doubling in the last five years. The CDC remains mum on the controversies surrounding Lyme disease, venturing out of their Ft. Collins, Colorado enclave to speak to patient groups only once or twice a year. Their website content is tightly aligned with the Lyme disease doctrine endorsed by the quasi-commercial medical society, the Infectious Diseases Society of America, and it’s unclear what personal or commercial interests ties exist between the CDC and the authors of the controversial IDSA Lyme disease guidelines, until our FOIA request is answered.

We hope someday to be able to provide answers to these questions on the “Under Our Skin” website. But until then, we continue to wait.

For a detailed timeline of our FOIA request: Film-FOIA-Detailed-Timeline

For the CDC’s Lyme disease case numbers: http://underourskin.com/blog/?p=916

For a transcript of the Willy Burgdorfer interview: http://underourskin.com/blog/?p=191