August 7, 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
(Letter also sent to the National Conference of State Legislatures)
Dear Governor Corzine:
I write on behalf of the Infectious Diseases Society of America (IDSA) to bring to the National Governors Association’s (NGA) attention problematic Lyme disease legislation that has been introduced in several states. In making the NGA aware of these legislative efforts, many of which are well-intentioned but therapeutically dangerous, our primary concern is to ensure the best quality in patient care and to protect the public’s health and safety. To this end, we believe it is critically important that you be fully apprised of the widespread consensus within the medical and scientific community about the appropriate treatment of Lyme disease, as well as the medical community’s concerns about unproven, potentially harmful treatments for so called “chronic” Lyme disease that are advocated by a small group of physicians.
IDSA represents more than 8,000 physicians and scientists and is widely recognized as the pre-eminent authority on infectious diseases (ID) in the United States. The Society's members focus on the epidemiology, diagnosis, investigation, prevention, and treatment of infectious diseases in the U.S. and abroad. Our members care for patients of all ages with serious infections, including Lyme disease. In 2006, IDSA published revised practice guidelines for the clinical assessment, treatment, and prevention of Lyme disease. The development of guidelines requires the review of scientific and medical literature. IDSA’s guidelines were developed by a 14-member panel of infectious diseases clinicians and researchers, including physicians with many years of clinical experience treating patients with Lyme disease. Nearly 400 references of papers and studies are cited in the IDSA guidelines and many, many more were reviewed that did not meet rigorous scientific standards.
As you may know, Lyme disease is a tick-transmitted infection that can cause non-specific symptoms such as muscle and joint pain, fevers, chills, and fatigue. Some patients may continue to experience these symptoms even after a course of antibiotic therapy has killed the Lyme disease bacterium. A small group of physicians have diagnosed such patients as having “chronic” Lyme disease and advocate treating them with repeated or prolonged courses of oral or intravenous
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antibiotics. Such diagnoses and treatments are not supported by the IDSA’s practice guidelines, nor are they supported by new Lyme disease guidelines published by the American Academy of Neurology, nor by the vast majority of experts in the field.
Of greatest concern are some states’ misguided attempts to legislate the prolonged use of antibiotic therapy for Lyme disease. There are no convincing published scientific data that support the existence of chronic Lyme disease. Carefully designed and conducted studies of Lyme disease treatments have failed to demonstrate benefit from prolonged antibiotic therapy. Rather, these studies have demonstrated that there is no difference in the measured improvement between patients receiving placebo and patients treated with long term antibiotics.
Furthermore, long-term antibiotic therapy may be dangerous, leading to potentially fatal infections in the bloodstream as a result of intravenous treatment. Also, although the bacteria that causes Lyme disease does not acquire resistance to antibiotics, long-term antibiotic exposure can lead to drug-resistance among other microorganisms, creating “superbugs” that cannot be treated with currently available drugs. In summary, far from improving the patient’s quality of life, prolonged antibiotic therapy may actually increase the patient’s suffering.
While IDSA opposes enactment of legislation that sanctions the use of prolonged antibiotic therapy, we support efforts to hold public hearings on Lyme disease as well as the establishment of legislative commissions to study all aspects of Lyme disease. Such hearings or commissions could play an important role in educating both state legislatures and the general public about the controversy surrounding treatment for Lyme disease. In order to ensure that these educational efforts are science-based, IDSA strongly urges the inclusion of board-certified ID physicians who represent a balanced perspective on Lyme disease.
For more information on Lyme disease and the recommendations by the vast majority of experts in the field, please visit websites for IDSA (www.idsociety.org), the Centers for Disease Control and Prevention (www.cdc.gov), the National Institute of Allergy and Infectious Diseases (www.niaid.gov), the American Academy of Neurology (www.aan.com), or the American College of Physicians (www.acponline.org).
I hope you will contact Mark Leasure at IDSA if you have questions or would like the names of board-certified ID physicians who may be willing to provide further guidance on appropriate treatments for Lyme disease. Mr. Leasure may be reached at (703) 299-0200 or via e-mail at mleasure@idsociety.org.
Best Regards,
Henry Masur, MD, FIDSA
IDSA President
cc:
Matt Salo, HHS Committee Director, NGA
Kathleen Nolan, Health Division Director, NGA Center for Best Practices
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Enclosures:
IDSA’s Practice Guidelines for the Treatment of Lyme Disease
IDSA’s Press Release on Practice Guidelines for the Treatment of Lyme Disease, October 2, 2006
David Whelan. “Lyme Inc. Ticks aren't the only parasites living off patients in borreliosis-prone areas.” Forbes, March 12, 2007.
Jason Feifer. “Combat Zone. There's No Neutral Ground in War Of Information About Lyme Disease.” Washington Post, May 15, 2007; HE01.
Jamie Talan. “A Rift Over Lyme Disease. Experts are split over diagnosis and treatment of the tick-borne illness.” Newsday, May 22, 2007.