Lyme Patients Watching IDSA Meeting with Optimism & Caution

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July 30th meeting to revisit IDSA Lyme guidelines.

On July 30, 2009, the Infectious Diseases Society of America (IDSA) Lyme Disease Review Panel will hear testimony in a daylong hearing in Washington, D.C. Patients, researchers and physicians from both sides of this heatedly debated topic will present testimony at the hearing, which is required under an antitrust settlement between the IDSA and the Connecticut Attorney General.

The Attorney General's investigation revealed the 2006 panel members had widespread commercial conflicts of interests and had excluded peer reviewed scientific evidence supporting chronic Lyme disease. The new panel is charged with evaluating the scientific basis of the guidelines, which deny patients access to antibiotic therapy--the only treatment option available for chronic Lyme disease. The IDSA guidelines are relied upon by health insurers to deny medical reimbursements and form the basis for unprofessional conduct actions, which place physicians, who continue to treat chronic Lyme disease, at risk of losing their license.

The testimony will be aired live over the internet and archived for one year on http://www.idsociety.org, the IDSA website. Further details will be available a week before the hearing. Lyme patients and advocates from around the country will be watching with optimism and caution as this important and powerful medical association reconsiders its controversial guidelines and the consequences for people and families with Lyme disease.

"These guidelines are so restrictive they effectively deny chronic Lyme disease patients access to the only medical treatment available to treat their illness and restore health. Guidelines need to place the interests of patients over the profit motivations of commercial interests in vaccines, Lyme test kits and insurers, which were widespread on the 2006 panel. Even this process, with IDSA selected panel members and presenters, is not impartial. Still, we hope the new panel will seize this opportunity to set things right by patients and alleviate the needless suffering these guidelines cause." commented Attorney Lorraine Johnson, Executive Director of the California Lyme Disease Association and one of the presenters.

"What we need is the establishment of a broader set of guidelines that reflect the latest science rather than guidelines that ignore an entire line of scientific reasoning, and we need guidelines that offer options for both diagnosis and treatment," adds Pat Smith, President of the national Lyme Disease Association, "since the current guidelines deny patients access to antibiotics, which is currently the only treatment option that can restore patients back to functional lives."

Lyme disease is a complicated illness. Diagnostic testing may fail to identify up to 50% of patients with Lyme disease which means that the ability to clinically diagnose patients is essential. In addition, many patients remain ill after standard treatment, suffering a disability equivalent to that of congestive heart failure. According to a recent survey by CALDA, many are unable to work or go to school. Physicians need guidelines that provide treatment options and permit them to use their clinical judgment to restore health to these patients. The IDSA protocols require positive lab testing for a diagnosis, restrict the exercise of clinical judgment of physicians and deny patients treatment options.    

There is growing opposition to the IDSA guidelines. A number of researchers, physicians and medical societies, including the American Association of Physicians and Surgeons, have opposed the IDSA restrictive treatment guidelines. The Connecticut State Medical Society supported legislation which unanimously passed the Connecticut General Assembly and was signed into law, protecting physicians from medical censure based on IDSA guidelines. California and Rhode Island have similar laws. This is reminiscent of the legislative effort for AIDS and breast cancer that patients pursued to obtain access to health care.

Although the CDC reported over 27,000 cases of Lyme disease in 2007, it admits reported numbers are probably 10 times higher, meaning 270,000 new cases of Lyme disease in 2007 alone. That figure does not even count cases diagnosed clinically by doctors (without a rash or positive test).

"Policymakers have created diagnostic and treatment guidelines that box physicians into an unworkable paradigm. This is a complex illness, with poor diagnostic tests. The current guidelines have unacceptably high failure rates for all stages of the disease and leave many patients suffering with no treatment options. Physicians need guidelines that give them the flexibility to treat these patients and restore them to health." adds Harriet Kotsoris, MD, Time for Lyme Medical Advisor.

What is needed to combat Lyme disease?

Facts, rather than polemics. Research for better diagnostic tests and treatments. Clinical judgment for Doctors. Treatment options for patients. Education for the public. President Obama told the AMA "You entered this profession to be healers - and that's what our health care system should let you be."

National and grass roots organizations, such as Time for Lyme, the national Lyme Disease Association and The California Lyme Disease Association are raising awareness, scrambling for much-needed research dollars to get definitive answers, and supporting legislation to allow clinicians greater treatment flexibility. We welcome a spirited and fair debate: a debate which acknowledges the existing inconvenient truths and the thousands who suffer from this latest mystery disease.

Time for Lyme, http://www.timeforlyme.org, the national Lyme Disease Association http://www.LymeDiseaseAssocation.org, and California Lyme Disease Association (http://www.lymedisease.org) are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this newly emerging infection.

Contact:

Melissa Chefec
MCPR Public Relations
203-968-6625
http://www.timeforlyme.org

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MELISSA CHEFEC
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