January 21, 2012- Congressman Christopher Smith (NJ) and colleagues (Gibson, Wolf) recently sent a letter to the National Guideline Clearing House requesting the removal of the highly controversial Infectious Diseases Society of America’s (IDSA) Lyme Disease Guidelines from its website.
For treatment guidelines to remain on the site past the five year cut-off point, they must be reviewed and updated to reflect current science, with a proper review panel in place and charged with that duty. IDSA failed to convene such a panel, attempting instead to pass off the exact same guidelines to the NGC as their updated version, which would remain in effect until 2015.
To support its request to keep the guidelines on the NGC website, the IDSA claimed its guidelines were updated by a panel, yet failed to mention the panel, established as a one-time legal remedy to comply with an anti-trust settlement, was specifically charged with not updating the guidelines. However, with IDSA doing business as usual, once again they felt breaking rules everyone else must follow would be acceptable for them to do.
Recommended changes to the Lyme guidelines, made by the IDSA’s own members and past president after the corruption of the Lyme disease guidelines development process had been exposed, also had not been incorporated.
This is not the first time IDSA members have attempted to by-pass rules regarding their outdated Lyme disease guidelines. In 2005 IDSA members tried to pass them off to officials in Maryland as being appropriate for use on Lyme patients, after the guidelines expired and were removed from the NGC. Volunteers from the Lyme Disease Education and Support Groups of Maryland prevented the IDSA guidelines from being adopted by the Maryland Department of Health and Mental Hygiene as the official “standard of care” in a state where countless people were, and still are, suffering from an uncontrolled epidemic.
Over the years IDSA guidelines and its authors have been accommodating insurers by providing them with a cost-saving approach for treating Lyme patients. Unfortunately, the insurance friendly recommendations- which include unsuccessful diagnostic and inadequate treatment protocols- have contributed to people being denied necessary treatment by insurers, then going on to become chronically ill or disabled, with many dying as a result.
Attorney General Richard Blumenthal (currently US Senator) released a report in May 2008 after a lengthy investigation of the IDSA’s Lyme disease guideline authors/editors and their guideline development process, stating in part:
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.”
Organizations and support groups, including the national Institutes of Medicine (IOM), the CT Attorney General’s Office and members of Congress, have reviewed the IDSA Lyme guidelines at various times and found them to be troublesome, if not deadly. Passing off old, tainted, conflicted guidelines as a new and updated product only further diminishes the reputation of the IDSA, its guideline authors and its editors, some who are affiliated with Johns Hopkins in Baltimore, MD.
Interested parties are currently awaiting a response from the NGC to their request to remove the guidelines from the website. Patients appreciate the efforts by Lymedisease.org, as well as Congressman Smith and his staff for taking an active role in spearheading the efforts to finally lay to rest the egregious and dangerous guidelines before they can cause more harm to innocent people. For more information and to read the letter, please click here.