A coalition of Lyme patient advocacy groups will hold rallies and a candlelight vigil on October 9 and 10 during the IDWeek medical conference in San Diego.
IDWeek is organized by the Infectious Diseases Society of America (IDSA).
IDSA publishes guidelines for diagnosis and treatment of Lyme disease, which are followed by many physicians and used by insurers to determine limits on coverage.
Since they were first published in 2000, IDSA’s guidelines have been the subject of intense controversy, including an antitrust investigation by the state of Connecticut and hundreds of protests. The guidelines are in the process of being updated and are expected to receive plenty of attention at IDWeek, where IDSA holds its annual business meeting.
Patient advocacy groups say the IDSA guidelines misrepresent science and restrict access to care for patients with chronic Lyme disease. They say additional harm occurs when patients are denied insurance coverage for evidence-based treatment options that could help them regain their health.
Despite a large number of peer reviewed studies that demonstrate persistent infection in patients who receive the IDSA recommended treatment, the authors of the IDSA guidelines refuse to acknowledge the existence of chronic Lyme.
According to Allison Caruana of the Mayday Project Lyme patient advocacy group, “Hundreds of peer-reviewed studies document the persistence of Lyme in humans and animals, with many providing confirmation by culture and PCR. Good science is ignored and suppressed by guidelines panelists who have staked their reputations on the premise that chronic Lyme does not exist.”
The article, Chronic Lyme Disease: Persistent Clinical Symptoms Related to Immune Evasion, Antibiotic Resistance and Various Defense Mechanisms of Borrelia burgdorferi, describes how Lyme can evade the immune system in several different ways. Mechanisms include varying its outer surface proteins to trick the immune system and forming biofilms that are impervious to antibiotics.
Serious flaws of the IDSA guidelines are documented in the article The Infectious Diseases Society of America Lyme Guidelines: A Cautionary Tale about the Development of Clinical Practice Guidelines, which cites excessive conflicts of interest, overreliance on expert opinion, failure to acknowledge legitimate controversy, and artificial unanimity as key problems.
The IDSA guidelines were last updated in 2006 and do not comply with the Institute of Medicine (IOM) rules for trustworthy guidelines or with the widely used GRADE system for rating the quality of evidence and recommendations.
More recent guidelines for Lyme disease from ILADS (International Lyme and Associated Diseases Society) guidelines were updated in 2014 and are compliant with the IOM rules and GRADE. The ILADS guidelines recognize chronic Lyme disease and recommend that “duration of therapy be guided by clinical response, rather than by an arbitrary treatment course.”
On March 9, IDSA released a project plan to update its guidelines. IDSA says the review process will follow the IOM rules, but according to Caruana and others, the composition of the panel already violates the standards.
“The IOM standards require guideline panels to include representatives of affected groups,” says Caruana. “The current panel includes no Lyme patients and no independent physicians who treat them. We are concerned about lack of transparency, exclusion of key stakeholders, and inclusion of panelists with serious conflicts of interests. IDSA is breaking its promise to follow the IOM rules.”
The Lyme Quilt will be displayed for the first time on the west coast. The quilt represents patients who are battling chronic Lyme, including many who succumbed to the disease. Co-organizers of the event include The Mayday Project, LymeDisease.org, and The San Diego Lyme Disease Support Group.
For more information visit www.facebook.com/events/1457255221263418