Policies for the treatment of Lyme disease are controlled, in large part, by the Centers for Disease and Control Prevention (CDC). The The Mayday Project—a volunteer organization encompassing those touched by Lyme disease – has accused the CDC of violating federal law by participating in secret meetings with the Infectious Diseases Society of America (IDSA).
They have created a petition requesting that the CDC End Preferential Treatment of the IDSA Guidelines for Lyme Disease. The petition states:
“. . . 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.”
The Mayday Project attests that serious and ongoing federal law violations have transpired. Officials responsible for the CDC’s Lyme disease protocols are seriously negligent, costing the U.S Healthcare system billions annually and costing patients thousands of dollars in out-of-pocket expenses due to misdiagnosis and poor treatment of those who suffer from the disease.
The petition also iterates that 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), requested by science writer Kris Newby for the award winning documentary “Under Our Skin,” have shown that the CDC has allowed the Ad Hoc Group to illegally determine federal policy on Lyme disease for the past decade.
Lorraine Johnson, CEO of LymeDisease.org, who reviewed the emails in question and also gave testimony at a congressional hearing, said that the group was:
“. . . 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.”
The Freedom of Information Act emails showed secret meetings were held 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.
No public notice of these meetings was given, and the special interests of these groups were held paramount to public health.
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 disease-related government policy without oversight.
Mayday demands immediate release of all records related to clandestine meetings attended by CDC or NIH employees.