We find it appalling that a respected medical society like the IDSA has chosen to oppose patient interests at every turn. Professional societies have an obligation to promote the welfare of patients by improving the quality of life for those seriously ill.

 September 1, 2007

The Honorable Jon S. Corzine
Chairman
Health and Human Services Committee
National Governors Association
444 North Capitol Street, NW, Suite 267
Washington, DC 20001

Dear Governor Corzine:

We are writing to balance the picture painted by Infectious Disease Society of America (IDSA) president Henry Masur in his August 7 letter to you.

We find it appalling that a respected medical society like the IDSA has chosen to oppose patient interests at every turn. Professional societies have an obligation to promote the welfare of patients by improving the quality of life for those seriously ill. Where significant disagreement regarding treatment protocols exists, responsible medical societies acknowledge the divergence of professional opinion and do not attempt to suppress treatment options. The IDSA is aware that there is considerable controversy regarding the treatment of Lyme disease, but its guidelines do not acknowledge this controversy or provide patients with treatment options.

Two medical societies, the IDSA, and its competitor, the International Lyme and Associated Diseases Society (ILADS) offer divergent treatment approaches. Both societies have published peer-reviewed guidelines that are listed on the National Guidelines Clearinghouse sponsored by the United States Department of Human Health Services. Under the IDSA guidelines—which have a high failure rate for patients with chronic Lyme—those who fail to respond to the IDSA protocols are denied any further treatment.

ILADS physicians remain willing to treat these seriously ill patients and provide the only viable treatment option for these patients.
Patient legislative efforts are primarily aimed at protecting their right to receive effective treatment for their illness. These legislative efforts are essential because not only does the IDSA deny treatment to these patients, it also misuses its position of power in the medical community to drum its competitors out of practice through unprofessional conduct actions. The Connecticut attorney general has launched an antitrust investigation of the IDSA for restraint of trade and exclusionary practices in the formulation of its guidelines.

The IDSA’s response to this investigation has been to step up its efforts to thwart patients’ efforts to obtain care through legislative action. One would be hard pressed to find another medical society that has so pitted itself against patient care. This kind of attack on people with cancer or mental illness would be inconceivable and it should not be tolerated here.

Despite the IDSA’s claim that there is no evidence that longer term treatment works, there are studies supporting both the concept that Lyme bacteria persists in the body after short term treatment and that retreatment is helpful. The most recent NIH-funded study was completed at Columbia University and is pending publication. The IDSA was aware of this study at the time it developed its new guidelines, but refused to consider these findings or delay the publication of its guidelines, even given the caliber of the new study. Moreover, five non-controlled studies support longer-term treatment protocols.

As noted previously, the ILADS guidelines are posted on the National Guidelines Clearinghouse and were required to comply with evidence-based medicine standards to qualify for posting. This debate is not about whether evidence exists, but about who selects and interprets the evidence. After the Connecticut Attorney General launched its investigation into the IDSA, members of the IDSA guidelines panel sought to shore up their beleaguered guidelines by having another medical society issue cookie-cutter guidelines, which the IDSA in turn endorsed.

These guidelines by the American Association of Neurologist were then cited by the IDSA as independent corroboration of the IDSA’s guidelines.

However, the guidelines are hardly independent. Three members of the IDSA panel served on the AAN panel. The overlapping panels are not disclosed and, in view of the pending Attorney General action, represent an extraordinary conflict of interest.

ILADS doctors and their patients have found that longer, more aggressive treatments are effective and relatively safe. Patients accept the risks of treatment because without it their quality of life is equivalent to that of patients with congestive heart failure. We are grateful to the physicians who give us that choice. Many of us are now well. We urge you to resist attempts to limit patients’ access to health care.

Sincerely yours,
Phyllis Mervine
President, CALDA