The IDSA panel list for the Lyme disease guidelines review panel were announced on Monday. The IDSA has a history of stacking its guidelines panels with like-minded experts and excluding divergent points of view. For patients this has meant limited or no treatment options. Imagine a prostate cancer panel of surgeons only—radiation, hormone treatment and watchful waiting might no longer be viable treatment options. How well-informed would surgeons be of alternatives to surgery? After the antitrust investigation launched by the Connecticut Attorney General, the IDSA was forced, as part of its settlement agreement, to have its 2006 Lyme disease guidelines reviewed by a new panel. The 2006 panel was riddled with conflicts of interest, exclusion of divergent viewpoints, and suppression of scientific evidence. (Click on title to read full article.)

The IDSA panel list for the Lyme disease guidelines review panel were announced on Monday. The IDSA has a history of stacking its guidelines panels with like-minded experts and excluding divergent points of view. For patients this has meant limited or no treatment options. Imagine a prostate cancer panel of surgeons only—radiation, hormone treatment and watchful waiting might no longer be viable treatment options. How well-informed would surgeons be of alternatives to surgery? After the antitrust investigation launched by the Connecticut Attorney General, the IDSA was forced, as part of its settlement agreement, to have its 2006 Lyme disease guidelines reviewed by a new panel. The 2006 panel was riddled with conflicts of interest, exclusion of divergent viewpoints, and suppression of scientific evidence.

The settlement agreement requires that the IDSA establish a panel of 8-12 members (including the chair) “who, as a group, reflect a balanced variety of perspectives and experience across a broad range of relevant disciplines, ranging from clinical experience in treating patients with Lyme disease to experience in investigating the best methods to diagnose and treat Lyme disease or other infectious diseases” to review the recommendations in its guidelines.  A medical-ethicist, Dr. Howard Brody, was selected by the Attorney General and the IDSA to ensure that panel members were free of conflicts of interest.

The IDSA panel list:

Carol J. Baker
Houston, Tx

William A. Charina, MD
Peabody, MA

 Paul H. Duray, MD (retired)
Westwood, MA

Paul M. Lantos, MD
Duke University Medical Center
Durham, NC

Gerald Medoff, MD
Washington University School of Medicine
St. Louis, MO

Manuel H. Moro, DVM, MPH, PhD
National Institutes of Health
Bethesda, MD

David M. Mushatt, MD, MPH & TM
Tulane University School of Medicine
New Orleans, LA

Jeffrey Parsonnet, MD
Dartmouth ]Hitchcock Medical Center
Lebanon, NH

Cmdr. John W. Sanders, MD
U.S. Navy
Naval Medical Research Center Detachment, Peru

Arthur Weinstein, MD
Washington Hospital Center
Washington, DC

We are concerned that a number of the panelists may have a bias against longer term treatment.  The Chair of the panel is the past president, two of the physicians appear to have an IDSA bias, and Weinstein has a well known bias against chronic Lyme disease.  Fortunately, Weinstein has been removed from the panel.  Bear in mind that having a bias does not mean that one must act on it.  And, it must be hoped that decent people endeavor to put reign their potential biases when something larger, like patient care, is at stake. 

The ethicist determined to exclude  all physicians who treat Lyme disease and receive income of more than $10,000 per year were excluded from the panel.  To put this in perspective, if a physician saw more than one patient per week, he would be excluded for bias.  This means the panel will have no expertise on the treatment of chronic Lyme disease. Excluding treating physicians from serving on this panel is as absurd as excluding cardiologists from serving on a cardiology panel and will result in panel that is biased toward the IDSA viewpoint.  On the one hand, there will be no physicians who treat according to the ILADS approach, but on the other hand, the only physicians who can pass this $10,000 threshold either do not treat Lyme or are chronic Lyme denialists who diagnose and treat “not Lyme” (e.g. CFS, FMS, or palliative care).  So this rule alone will result in a panel that is predisposed toward “IDSA speak”. 

Physicians who did not exceed this $10,000 threshold and who believe in longer term treatment were excluded on the basis that they lacked experience sitting on guideline panels, IRB boards, or the peer review boards of medical boards.  All of these requirements favor academicians and specialists over community treating physicians and internists.  IDSA physicians could sit on other IDSA guidelines panels.  In addition, the IDSA is primarily academicians who would normally sit on IRB boards.  The peer review requirement is troubling because for years the IDSA has controlled the peer review boards of medical journals. The net results is that no ILADS physicians were chosen for the panel.  And, the systematic application of these rules seems designed to acheive that result.

We are watching this closely, monitoring the situation, and voicing patient concerns.  If you have information on any of the proposed panelists that you believe impairs their ability to serve on the panel impartially, please email me privately at lbjohnson@lymedisease.org.