After a decade of controversy, the Infectious Diseases Society of America (IDSA) guidelines for treatment of Lyme disease, first posted in 2006, have lapsed and been removed from the National Guideline Clearinghouse (NGC). Lyme patients and advocates are calling on the CDC to follow suit and remove references to the IDSA guidelines from all CDC publications.

With its abdomen engorged with a host blood meal, this image depicts a lateral, or side view of a female blacklegged, or deer tick, Ixodes scapularis/CDC

During a January 26-27, 2016 telethon, Lyme patients and advocates from more than 45 states called on their representatives and senators in Congress to compel CDC to end its preferential treatment of theIDSA guidelines and investigate how conflicts of interest have influenced Federal policy on Lyme disease.

The position paper for the telethon describes how CDC provides preferential treatment to IDSA by promoting IDSA’s 2006 guidelines for Lyme disease while withholding information from the public about the more current and more comprehensive 2014 Lyme guidelines from the International Lyme and Associated Diseases Society (ILADS).

According to Allison Caruana, co-founder of the Mayday Project Lyme patient advocacy group, “It has been 40 years since Lyme disease was identified, yet CDC has failed to protect the public health and has made matters worse by endorsing outdated treatment guidelines that misrepresent science and restrict access to care for chronically ill patients.”

Unlike the ILADS guidelines, the IDSA guidelines do not comply with the Institute of Medicine (IOM) 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.

“What’s more troubling,” says Caruana, “is that CDC officials who provide the preferential treatment are also members of IDSA, the organization receiving the preferential treatment— a glaring and long-standing conflict of interest.”

Caruana 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.”

In response to CDC’s refusal to end its preferential treatment of IDSA, The Mayday Project has scheduled a solidarity rally May 19-20 at CDC headquarters in Atlanta.