Lyme disease is quickly becoming our nation’s most misdiagnosed and fastest growing infectious disease, growing at a rate more rapidly than AIDS. Chances are, you know someone who is infected with Lyme disease. You might even be infected yourself and not know it. Lyme is a serious and debilitating disease that affects hundreds of thousands of people, but if you were to become ill from it, according to the current medical guidelines, you may not receive any treatment.

When you get sick, treatment guidelines created by the Infectious Diseases Society of America (IDSA), are a significant factor in deciding what kind of treatment you receive for your illness. The Lyme disease guidelines were last reviewed by an IDSA panel in 2006. They determined that Lyme can only be diagnosed with a confirming test. The diagnostic tests for Lyme disease are not only expensive, but they are unreliable, often inconclusive, and frequently show false negatives when patients are actually critically infected with Lyme. Requiring a positive test result means that many people with Lyme disease will not be diagnosed and will not receive treatment for the disease. The tests most doctors use to test for Lyme disease miss 44 out of every 100 infected people. These IDSA guidelines are commonly used by insurance companies to restrict and deny coverage for long-term medical care. They also have a critical influence on how physicians decide to treat their patients.

By signing this petition, you are asking:

For the IDSA to change its guidelines so that patients who are infected with chronic Lyme disease can receive appropriate and adequate treatment, subsequently allowing physicians to diagnose and care for patients more effectively.

 

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Background Information:

The IDSA is supposed to revise its guidelines every five years, but the National Guidelines Clearinghouse (NGC), allowed the 2006 diagnostic standards to remain in place. In spite of all of the emerging research contradicting the current Lyme guidelines, in 2011, the IDSA Lyme panel decided that there were no changes to be made.

The International Lyme and Associated Diseases Society "is concerned that the existing IDSA Lyme guidelines do not reflect the best available scientific and medical evidence for many patients with Lyme disease. To date, the limited clinical trials sponsored by the National Institutes of Health have validated the severity of chronic manifestations of Lyme disease 4.7 to 9 years after onset. ILADS has concluded that the current IDSA Lyme guidelines do not offer sufficient diagnostic and treatment options to improve the outcome for these individuals with Lyme disease." 

In 2008, the Attorney General of Connecticut, Richard Blumenthal, launched an antitrust investigation into the IDSA's 2006 Lyme disease guidelines writing process. According to the Connecticut Attorney General's press release in May 2008, the IDSA did not review any of the panelists for conflicts of interest. A number of these 2006 panelists did have conflicts of interest, such as working for pharmaceutical or insurance companies. The panel chairman, Gary P. Wormser, MD, who chose each member of the panel, holds an incredible bias, believing that there is no such thing as chronic Lyme. In fact, in order to reach "consensus," the 2000 IDSA Lyme panel removed a member who did not agree that chronic Lyme disease does not exist. The panel assembled in 2006 expressly denied the appointment of scientists and doctors with differing views.

In 2010, the CT Attorney General determined that the IDSA violated the Lyme Antitrust settlement agreement and had also violated its own conflicts of interest policy. This antitrust review panel was not empowered to revise or update the guidelines. They recommended over 25 changes to the guidelines-- none of which have been implemented. 

 

For more information on Lyme disease please visit: lymedisease.org OR ilads.org

 

References:

1) author unknown. http://www.lymedisease.org/home.html

2) Bransfield, R. MD. "ILADS Calls on IDSA to Remove Barrier to Lyme Guideline Change" February 5, 2010

3) author unknown, LymeDisease.org. "Sign Petition to Remove IDSA Guidelines from NGC." January 25, 2012

4) Johnson and Stricker.  "The Infectious Diseases Society of America Lyme Guidelines: a cautionary tale about the development of clinical practice guidelines." Philosophy, Ethics, and Humanities in Medicine 2010, 5:9

5) Chefec, Melissa. "IDSA Violates Lyme Antitrust Settlement Agreement With Connecticut Attorney General" February 4, 2010.

6) Press Release. "Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter." May 1, 2008