Lyme Warriors Surround Infectious Diseases Society of America Headquarters, Issue Demands

Hundreds of Lyme disease patients and activists from around the United States have surrounded the headquarters of the Infectious Diseases Society of America. They are demanding that IDSA update its controversial guidelines for Lyme disease and acknowledge the evidence for a chronic form of Lyme disease that is resistant to antibiotic treatment.

Mayday coordinator Josh Cutler has been fighting late stage neurological Lyme disease for eight years. This condition affects the brain, the central nervous system, and the autonomic nervous system that regulates blood pressure and other vital functions. Cutler was rushed to the emergency room on multiple occasions and at one point was confined to a wheelchair. Despite antibiotic treatment that exceeds IDSA recommendations, Cutler, who was a successful network engineer before he contracted Lyme, remains seriously ill and unable to work.

Cutler says, “IDSA’s refusal to update its guidelines for Lyme disease contributes to the unnecessary suffering of thousands of people like me. We are uniting at Mayday to demand IDSA stop its misrepresentation of science, end its conflicts of interest, and fix its guidelines for Lyme.”

In 2009, the Association of American Physicians and Surgeons wrote an open letter to the IDSA sharply criticizing its guidelines for Lyme. Following is an excerpt.

“AAPS objects to the overly rigid IDSA Lyme Guidelines that were published in 2006… These Guidelines should be revised to recognize that the physician must retain full flexibility in the diagnosis and treatment of Lyme disease. Medical societies do not practice medicine; physicians do. The mandate for specific laboratory confirmation is particularly objectionable, as testing for Lyme disease is notoriously insensitive and unreliable. Patients who do not meet this criterion would often be denied treatment that could mitigate severe chronic disability. In some cases, long-term treatment is required. Physicians must be able to exercise their professional judgment concerning the best treatment for each individual patient, without restraint by one-size-fits-all Guidelines, which amount to mandates and prohibitions.”

In November 2006, Connecticut Attorney General Richard Blumenthal, now a U.S. Senator, launched an investigation of IDSA based on allegations of abuses of monopoly power and exclusionary conduct in the development of their guidelines, in violation of antitrust law.

In a May 2008 press release Blumenthal said, “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”

IDSA reached a consent agreement with Blumenthal’s office calling for creation of a review panel to thoroughly scrutinize the 2006 guidelines and update or revise them. In 2009, the guidelines were reviewed and updated, but no significant changes were made, and Blumenthal charged the IDSA with violating the agreement.

According to Blumenthal, the IDSA used an “improper voting procedure, based on a process of its own design, which blatantly violates the Settlement Agreement and undermines the integrity of the voting process.”

In addition to inflexibility regarding its guidelines, IDSA has consistently opposed patient-centered legislation at the State and Federal levels. At their 2004 annual meeting, the IDSA passed a resolution to oppose patient legislative initiatives, and at their 2006 annual meeting “Defeat Patient Sponsored Legislation” was a top agenda item.

Cutler is concerned about the adversarial relationship between the IDSA and chronically ill patients. “IDSA’s response to the epidemic of chronic Lyme disease is to pretend it doesn’t exist,” he says. “Thousands of people suffer as a result. Instead of working for the benefit of patients, IDSA works hard to block badly needed legislation.”

About the Mayday Project
The Mayday Project was formed in 2011 by a group of volunteers who have been touched by Lyme in some way. They aim to raise awareness about chronic Lyme disease and related tick-borne illnesses. Mayday supporters advocate for more accurate tests, improved access to treatment, increased education for physicians, and more funding for research. For more information visit www.themaydayproject.org.

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