LYMEPOLICYWONK: IDSA Lyme Guidelines—Do they violate the IDSA’s own rules on guidelines?
Patients think that the IDSA guidelines are harmful to their health because physicians, hospitals, and insurers rely on them to deny patients access to the care they vitally need to restore their health. Patients believe that the IDSA guidelines violate one of the cardinal rules of medicine, “First do no harm.” Depriving seriously ill patients of treatment is an egregious harm. But do the IDSA guidelines violate their own rules? Indeed, they do.
I discuss some of the more important guidelines rule* violations below.
1. Panels should “represent a range of experts that is sufficiently broad enough to adequately explore the topic”. To adequately explore the topic, at a minimum, one would need to include divergent viewpoints on the panel and no IDSA guidelines panel has done this. In fact, all physicians who treat chronic Lyme, including some who are members of the IDSA were rejected for previous guidelines panels and this guideline hearing panel.
2. Guidelines should discuss whether the outcomes have been considered from the perspective of the patient, the provider, society in general, or the health care administrator and how competing values were balanced. The patient’s prospective is not included in the IDSA guidelines. In fact, 80% of the patients polled in the CALDA survey of 3,600 patients said that they would never elect to be treated under the IDSA guidelines.
3. Guidelines should reconcile differences from previous guidelines. No attempt is made in the 2006 guidelines to reconcile differences with previous guidelines, including those of ILADS.
4. Panels should include members of relevant professional societies and to work toward consensus in their recommendations. ILADS would be a relevant professional society. Yet it is clear that no members of ILADS have ever been included on a panel. Nor has there been any attempt to work toward consensus with ILADS physicians.
*For those interested in following the breadcrumbs on this, the IDSA has a number of guidelines on the guideline development process itself – that is, the proper procedures for developing guidelines. The two most important are the “Operating Rules for IDSA Guidelines” ( the IDSA has referred to these in correspondence as “the Clinical Practice Guideline Development Handbook”) and Kish MA, IDSA Guidelines: Guide to Development of Practice Guidelines (Clin Infect Dis. 2001; 32(6): 851-4).
You may contact Lorraine Johnson, JD, MBA at firstname.lastname@example.org.