Lyme Victims from Around US to Gather at IDSA Headquarters and Demand Changes to Guidelines for Lyme
Lyme disease is the fastest growing infectious disease in the US, with cases far outnumbering those of HIV/AIDS, West Nile virus, swine and avian flu combined. Lyme disease, especially in its late-stage or chronic form, continues to be downplayed, overlooked and dismissed.
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 a dozen occasions and at one point was confined to a wheelchair. According to the IDSA, Cutler cannot possibly still have Lyme because he was treated according to their guideline’s recommendations.
Cutler says, “IDSA’s guidelines for Lyme disease contribute to misdiagnosis and denial of treatment for thousands of people like me. We are uniting to demand that IDSA stop its misrepresentation of science, end its conflicts of interest, and fix its guidelines for Lyme. IDSA needs to put our health first.”
Controversy about Lyme disease has divided the medical community and led to the creation of the International Lyme and Associated Diseases Society (ILADS), which has published its own guidelines for Lyme. ILADS and IDSA guidelines disagree about virtually everything including: testing, diagnosis, treatment, and the very definition of Lyme disease.
A growing number of physicians, legislators, and legal experts are speaking out against the IDSA guidelines for Lyme.
According to Lorraine Johnson, an attorney/advocate for issues related to the medico-legal and ethical aspects of Lyme disease, “Doctors rely on guidelines to determine how best to treat their patients, and insurance companies use them to decide what treatments to pay for. The IDSA guidelines for Lyme define the illness so narrowly that many people otherwise determined to have Lyme disease are denied access to medical care. Frequently, those given treatment are limited to a “standard course” of antibiotics (often 2–3 weeks) even when they remain ill. Furthermore, insurance companies often won’t pay for anything beyond what’s stipulated in the guidelines.”
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-
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.”
Mayday Project coordinator Cutler calls on Lyme victims and others touched by Lyme to stand together and make a difference.
“We expect hundreds to attend. They are suffering and angry about the handling of the Lyme epidemic. They want access to treatment. They want better tests. They want insurance coverage that doesn’t end when treatment fails. They want doctors to stop telling them it’s all in their heads. And most fundamentally, they want the IDSA to place the health of patients ahead of professional biases and self-interest.”
The 2014 Mayday Project protest will take place on the public sidewalks surrounding IDSA headquarters at 1300 Wilson Boulevard, Arlington, Virginia.
The protest will begin 7:00 a.m. Thursday, May 22, and continue through 5:00 p.m. Friday, May 23. A press conference is scheduled for May 22 at 11:00 a.m.
About the Mayday Project
The Mayday Project was formed in 2013 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, better guidelines, improved access to treatment, increased education for physicians, and more funding for research. For more information visit www.themaydayproject.org.