Lyme Disease Patients Denied Treatment Following New 2006 IDSA Guidelines: Connecticut Attorney General Launches Anti-Trust Investigation

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Connecticut State Attorney General, Richard Blumenthal, files a Civil Investigative Demand (CID) in an unprecedented move following the October 2006 release of the Infectious Diseases Society of America (IDSA) Lyme Disease Treatment Guidelines that are already being used to deny Lyme disease patient care. Under the new IDSA Guidelines, treatment is significantly more restrictive despite an extensive body of medical research that clearly documents persistent chronic Lyme disease and the benefits of long-term Lyme treatment. The new IDSA Guidelines are being used as the basis to deny medical care by physicians and deny insurance coverage for treatment. A Lyme Rights Protest against the new IDSA Guidelines is scheduled for Thursday November 30, 2006 from 12-3PM at Westchester Medical Center/New York Medical College.

guarantee people will not be diagnosed and treated in time, empower insurance companies to deny treatment coverage, and threaten your physician's ability to treat.

In an unprecedented move, Connecticut State Attorney General Richard Blumenthal filed a Civil Investigative Demand (CID) on the Infectious Diseases Society of America (IDSA) following the October release of the 2006 IDSA Lyme Disease Treatment Guidelines. The Attorney General is investigating possible anti-trust violations by the IDSA in connection with exclusionary conduct and monopolization in the development of the Lyme guidelines. "These guidelines may have a serious anticompetitive effect, insofar as they prevent competing forms of diagnosis and treatment," he says.

The new guidelines deny the existence of chronic, infectious Lyme disease and list as "not recommended" most of the conventional medical treatments prescribed by physicians as well as alternative treatments often chosen by patients. Even some nutritional supplements should not be an option, they state. Dr. Daniel Cameron, a New York internist and Lyme specialist, worries that the IDSA guidelines do not offer an answer for the thousands Lyme patients left with a poor quality of life after their three- or four-week treatment. "How can we, as scientists and physicians, turn our backs on all the things we do not yet know about this complex emerging disease and its long-term effects on individuals and our communities?" he asks.

Clinical guidelines from powerful medical societies, like the IDSA, now determine the legal standard of care that physicians must follow in treating patients. The Centers for Disease Control (CDC) provide a link to the IDSA guidelines on their official website. Many patients treated under IDSA guidelines continue to be sick and disabled. The guidelines are being used by insurers to deny treatment reimbursement and by medical boards to revoke physician's licenses. However, patient advocates say that access to care under the guidelines will be the central issue as the guidelines prohibit the exercise of clinical discretion.

Lorraine Johnson, an attorney and the executive director of the California Lyme Disease Association (CALDA), stated, "It is important to keep in mind that these guidelines were drafted by a private medical society. This is a private organization mandating matters of public medical treatment policy in a restrictive, exclusionary and closed manner." The IDSA refused to allow patient or chronic disease-treating physician input into the guidelines through the Lyme Disease Association (LDA) and the International Lyme and Associated Diseases Society (ILADS), although both organizations requested to be a part of the process.

According to the CDC, Lyme disease is the leading cause of all vector-borne illness in the US. During the last twenty years, the annually reported number of adults and children diagnosed with Lyme disease has increased 25 times, reaching 23,305 cases in 2005. However, under-reporting is generally believed to be ten-fold.

CALDA joins the LDA in applauding Blumenthal's action. Pat Smith, president of the LDA, explained that since the 2006 guidelines claim that Lyme disease is easily treated with 21 to 28 days of antibiotics, health insurance companies use them to deny treatment reimbursement to people with chronic Lyme disease who sometimes need extended treatment and patients nationwide are having claims denied. "In the last two months I have received hundreds of emails from patients and almost 18,000 people have signed our petition," she said.

The new IDSA guidelines do not acknowledge that complex bacteria like Lyme disease spirochetes can survive in the body and the brain, evading the immune system and short-term courses of antibiotics, nor do they acknowledge any other professional diagnostic or treatment guidelines such as those published by ILADS, which discuss chronic disease testing and treatments. After the guidelines were published, ILADS requested their immediate retraction, saying that the guidelines committee selected research that agreed with their opinion and ignored opposing views. Of 18,537 articles about tick-borne diseases listed on National Library of Medicine website, the committee looked at only 400, the letter said.

"Many recommendations in the IDSA guidelines are based on the weakest evidence, namely opinion rather than scientific fact," said San Francisco physician Raphael Stricker, MD, president of ILADS. "The guidelines will make doctors afraid to diagnose or treat Lyme disease, and this chilling effect will harm patients and patient care."

A patient-run website called Lyme News summarizes the current crisis from the patient perspective. They say the new IDSA Guidelines "guarantee people will not be diagnosed and treated in time, empower insurance companies to deny treatment coverage, and threaten your physician's ability to treat." They have organized a Lyme Rights Protest against the new 2006 IDSA Guidelines at Westchester Medical Center/New York Medical College on Thursday, November 30, 2006 from 12-3PM. Go to http://www.LymeNews.org for details.

To review and/or sign the LDA petition, go to http://www.lymediseaseassociation.org/referral/Petitions/Petition.php?id=1.

A copy of the ILADS retraction letter is available at http://www.ilads.org/press_releases.html
Choose October 25, ILADS Demands Retraction of IDSA Lyme Guidelines]

About California Lyme Disease Association (CALDA)

CALDA, an affiliate of the Lyme Disease Association, is a non-profit corporation that acts as the central voice for all tick-borne disease issues in California and a supporting voice for national issues. Through advocacy, research and education of the public and health care professionals, CALDA seeks to prevent tick-borne diseases, encourage early diagnosis, and improve the quality of healthcare provided to people with tick-borne diseases. CALDA publishes the Lyme Times, a lay journal that is distributed nationally and internationally. For more information, visit http://www.lymedisease.org

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