CDC stands by IDSA Lyme treatment guidelines
The Mayday Project, a Lyme patient advocacy organization, issued the following press release on Dec. 15, 2015:
CDC Refuses to End Preferential Treatment of IDSA Lyme Guidelines; Patient advocates cite CDC/IDSA conflicts of interest
WASHINGTON, DC, December 15—In response to a citizen petition filed with the Centers for Disease Control and Prevention (CDC) on October 14, 2015, the CDC refused to end the preferential treatment it provides to the Infectious Diseases Society of America (IDSA) by endorsing and promoting IDSA’s 2006 guidelines for diagnosis and treatment of Lyme disease, while it continues to withhold information about more recent, peer-reviewed guidelines from the International Lyme and Associated Diseases Society (ILADS).
Since they were first published in 2000, the IDSA guidelines for Lyme disease have been the subject of intense controversy, including an antitrust investigation by the state of Connecticut in 2008 and hundreds of protests. The IDSA guidelines restrict antibiotic treatment to two to four weeks and dismiss the existence of chronic Lyme disease, despite hundreds of scientific studies documenting cases of persistent infection after short-term antibiotic treatment. In contrast, the ILADS guidelines recognize chronic Lyme and recommend that the “duration of therapy be guided by clinical response rather than by an arbitrary treatment course.”
The petition, “End Preferential Treatment of the IDSA Guidelines for Lyme Disease,” claims that CDC’s preferential treatment harms thousands of chronically ill patients, who are frequently misdiagnosed and denied medically necessary treatment because of restrictions imposed by the IDSA guidelines. 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.
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. Instead, she defended CDC’s preferential treatment, 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, a Lyme patient advocacy group that collaborated on the petition, asks, “How can these guidelines represent the best available synthesis of the medical literature? The IDSA guidelines are nine years old and non-compliant with Institute of Medicine (IOM) standards and the GRADE system for rating evidence. On the other hand, 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.”
According to the petition, CDC’s preferential treatment of IDSA, which is a private organization, 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.”
Bruce Fries, a member of the Mayday Project and lead author of the petition says, “Even more troubling is that Dr. Bell, who endorses the preferential treatment of IDSA, is also a member of IDSA—a clear conflict of interest.” Fries added, “It is 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.
About the Mayday Project
The Mayday Project was formed by a group of volunteers who have been touched by Lyme disease. Mayday advocates for more accurate tests, better guidelines, improved access to treatment, improved education for physicians, and more funding for research. For more information, visit www.themaydayproject.org.
The Infectious Diseases Society of America Lyme guidelines: A Cautionary Tale about the Development of Clinical Practice Guidelines
Lyme Retreatment Guidance May be Flawed
Findings of Richard Blumenthal’s Anti-Trust Investigation of IDSA
Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines
Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey