A D.C. based citizens action group wants the Centers for Disease Control (CDC) in Atlanta to change its stance on the treatment of Lyme disease in the United States.
The Patient Centered Care Advocacy Group filed a “citizen petition” with the Centers for Disease and Control Prevention calling on it to end the preferential treatment it extends to the Infectious Diseases Society of America (IDSA) guidelines for diagnosis and treatment of Lyme disease. The petition was filed in accordance with the Administrative Procedure Act (APA), which governs the conduct of the federal government.
According to the petition, the CDC provides preferential treatment to IDSA by endorsing and promoting IDSA’s 2006 guidelines for Lyme disease, while withholding information from healthcare providers and the general public about more comprehensive guidelines for Lyme disease published in 2014 by the International Lyme and Associated Diseases Society (ILADS).
Patient Centered Care Advocacy Group founder Bruce Fries notes, “Despite the fact that the IDSA guidelines are not compliant with current standards and are based on outdated science that has been discredited by a growing body of research, the CDC continues to endorse and promote them while withholding information about competing guidelines from ILADS, which contain information on evidence-based treatments that could improve the health of thousands of chronically ill patients throughout the world.”
He adds, “The CDC officials who provide and defend the preferential treatment are also members of IDSA, the organization receiving the preferential treatment—a glaring and long-standing conflict of interest.”
Unlike the ILADS guidelines, the IDSA guidelines do not comply with the National Academy of Medicine Standards for Developing Trustworthy Clinical Practice Guidelines or with the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Working Group standard for rating evidence and recommendations.
The IDSA guidelines also do not reflect evidence that shows persistent infection (chronic Lyme) is common and that the CDC-endorsed two-tier test for Lyme misses more than half the cases. IDSA claims the test is accurate and most patients are cured with 2-4 weeks of antibiotics. By contrast, the ILADS guidelines recognize the existence of chronic Lyme and recommend that the duration of therapy be guided by clinical response, rather than by an arbitrary treatment course.
The National Academy of Medicine report, Clinical Practice Guidelines We Can Trust, cites the 2006 IDSA Lyme guidelines to illustrate the problems of conflicts of interests, lack of transparency, and scientific bias in guidelines development.
Fries says, “because of restrictions imposed by the 2006 IDSA guidelines, thousands of patients are harmed by misdiagnosis and denial of medically necessary treatment. CDC’s failure to provide equivalent exposure for competing guidelines from ILADS compounds the harm by omitting information that could help these severely ill patients recover from this devastating disease.”
The petition points out that CDC’s preferential treatment of IDSA 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 adds, “Because of CDC policy failures, mismanagement and violations of federal law, hundreds of thousands of Lyme patients experience a greatly diminished quality of life—a tragedy compounded by financial hardships from out-of-pocket costs and lost income. The burden on individuals as well as on our economy is enormous, the suffering is widespread and much of this is preventable.”