The Mayday Project Lyme patient advocacy group announced a response from the Centers for Disease Control and Prevention (CDC) to the citizen petition, End Preferential Treatment of the IDSA Guidelines for Lyme Disease.
The petition, filed October 14, 2015, claims that CDC provides preferential treatment to the Infectious Diseases Society of America (IDSA) by promoting IDSA’s 2006 guidelines for diagnosis and treatment of Lyme disease while withholding information from the public about more recent guidelines from the International Lyme and Associated Diseases Society(ILADS).
In an email response to the petition, Beth P. Bell, MD, Director of CDC’s National Center for Emerging and Zoonotic Infectious Diseases (NCEZID), declined to take action, saying, “CDC believes that IDSA guidelines currently represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease.”
Allison Caruana of the Mayday Project asks, “How can the IDSA guidelines represent the best available synthesis of the medical literature? These guidelines are nine years old and non-compliant with Institute of Medicine (IOM) standards and the GRADE system for rating evidence. In contrast, the guidelines from ILADS were published in 2014, are compliant with the IOM standards and GRADE, and have been accepted and published by the National Guideline Clearinghouse.”
Bruce Fries, a member of the Mayday Project and lead author of the petition says, “Even more troubling, according to the CDC website, some of the officials who endorse the preferential treatment of IDSA are also members of IDSA.”
The petition claims that “CDC’s preferential treatment of IDSA harms chronically ill patients, who are frequently misdiagnosed and denied medically necessary treatment because of restrictions imposed by the IDSA guidelines.” It adds that “CDC’s failure to provide equivalent exposure for the ILADS guidelines compounds the harm by limiting access to information about evidence-based treatments that could help these severely ill patients recover from this devastating disease.”
According to the petition, CDC’s preferential treatment of IDSA also violates the Standards of Ethical Conduct for Employees of the Executive Branch, which states: “Employees shall act impartially and not give preferential treatment to any private organization or individual.”
Fries says, “It’s unacceptable that when a federal government agency is presented with evidence of improprieties, the official response is to confirm the improprieties and indicate they will continue.”
In response to the reply from CDC, signers of the petition are contacting their Congressional representatives and requesting assistance to compel CDC to end its preferential treatment of the IDSA guidelines for Lyme disease.
Press release provided by The Mayday Project