CDC Draws Ire for Secret Meetings on Lyme Disease Policy

“The Centers for Disease and Control Prevention (CDC) group in charge of policy for Lyme disease violates federal law by participating in clandestine advisory meetings with the Infectious Diseases Society of America (IDSA),” says The Mayday Project—a volunteer organization comprised of those touched by Lyme disease—who collaborated on a petition calling on CDC to End Preferential Treatment of the IDSA Guidelines for Lyme Disease.

The petitioners claim that “because of restrictions imposed by the critically flawed IDSA guidelines, which are endorsed and promoted by CDC, thousands of chronically ill patients are harmed by misdiagnosis and denial of medically necessary treatment.” According to a Johns Hopkins study, these poor outcomes cost the U.S. healthcare system $1.3 billion annually. Patient out-of-pocket expenses and burdens to Medicare and Medicaid cost our economy billions more.

The petition documents what advocates claim are serious, long running violations of federal law by officials responsible for CDC’s Lyme disease program.

According to the petition, the Ad Hoc International Lyme Disease Group (Ad Hoc Group) was formed in 2005 by CDC and NIH employees and authors of the IDSA guidelines. Emails released in response to a Freedom of Information Act (FOIA) request by science writer Kris Newby for the award winning documentary Under Our Skin, show that CDC has allowed the Ad Hoc Group to illegally determine federal policy on Lyme disease for the past decade.

According to Congressional testimony by Lorraine Johnson, CEO of LymeDisease.org, who reviewed the emails, the Ad Hoc Group “composed of members of the Infectious Diseases Society of America (IDSA), a medical specialty society, along with members of the Centers for Disease Control & Prevention (CDC) and the National Institutes of Health (NIH), has been acting in violation of fundamental principles of ethics. This group has been covertly setting government Lyme policy, intentionally excluding other stakeholders, running afoul of government open meeting standards, and deliberately subordinating the public interests to those of a private medical society.”

CDC emails show that a clandestine conference of the Ad Hoc Group was held in May 2005 at Westchester County Medical Center in Valhalla, NY. Attendees included CDC employees Barbara Johnson and Paul Mead, Susan O’Connell of Britain’s National Health Service, and IDSA guidelines panelists Mario Aguero-Rosenfeld, Paul Auwaerter, Johan Bakken, Linda Bockenstedt, Raymond Dattwyler, Stephen Dumler, Durland Fish, John Halperin, Mark Kempler, Peter Krause, Robert Nadelman, Eugene Shapiro, Sunil Sood, Gerold Stanek, Allen Steere, and Franc Strle.

According to Johnson:

No public notice was given and the meeting was clandestine. The participant list for the meeting, chaired by Dr. Wormser included principally IDSA researchers and CDC employees…” the Ad Hoc Group, “which subsequently added two members of the NIH, Drs. Phil Baker and Ed McSweegan, to its membership ranks, proceeded to work on IDSA projects and government policy projects regarding Lyme disease.

Participation of CDC and NIH employees in clandestine advisory committee meetings violates The Federal Advisory Committee Act, which says:

“Each advisory committee meeting shall be open to the public,” and “records, transcripts, minutes, appendixes, working paper, drafts, studies, agenda, of other documents shall be available for public inspection.

The FOIA request period ended in 2007. Other than documents obtained via FOIA, no records have been made available for public inspection. Petitioners believe the Ad Hoc Group has continued to set Lyme-related government policy without oversight. They call for the immediate release of all records related to Ad Hoc Group meetings attended by CDC or NIH employees.

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