On Thursday, July 30, 2009, the Infectious Diseases Society of America (IDSA) Lyme Disease Review Panel will conduct a daylong hearing, required under an antitrust settlement between the IDSA and the Connecticut Attorney General. Patients, researchers and physicians from both sides of this hotly debated topic will present testimony to the panel in Washington, DC. The Attorney General’s investigation of the IDSA revealed the 2006 guidelines 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 currently deny patients access to antibiotic therapy – the only treatment option available for chronic Lyme disease. Health insurers rely on the IDSA guidelines to deny medical reimbursements. State medical boards use them to launch unprofessional conduct actions, placing physicians who continue to treat chronic Lyme disease at risk of losing their licenses.

The testimony will be aired live over the internet and archived for one year on www.idsociety.org, the IDSA website. Lyme patients and advocates from around the country will be watching.

Patient advocates say the insurance-friendly guidelines are so restrictive they effectively deny people with chronic Lyme disease access to antibiotics, the only medical treatment available to treat their illness and restore them to functional lives. The IDSA counters that there is “no convincing biologic evidence to support a diagnosis of chronic Lyme disease,” dismisses study results showing that chronic symptoms improve with longer antibiotic treatment, and claims antibiotics are dangerous.  Up to half the patients treated according to the IDSA protocol remain ill.

“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.”

Lyme disease is a complicated illness. Since diagnostic testing may fail to identify 50% of the patients with Lyme disease, a physician’s ability to diagnose patients clinically is essential. In addition, many patients remain ill after standard treatment, as disabled as people with congestive heart failure. According to a recent survey by CALDA, many are unable to work or go to school. Physicians need guidelines providing treatment options and permitting them to use their clinical judgment. Instead, the IDSA protocol requires positive lab testing for a diagnosis, restricts physician’s exercise of clinical judgment and denies 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, oppose the IDSA restrictive treatment guidelines. In June, the Connecticut State Medical Society supported legislation unanimously passed by the Connecticut General Assembly and signed into law, protecting physicians from medical censure based on IDSA guidelines. California and Rhode Island have similar laws.

“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.

National and grass roots organizations, such as Time for Lyme, the national Lyme Disease Association and 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.

 “This reminds me of similar efforts by AIDS and breast cancer patients to obtain access to health care,” said CALDA president Phyllis Mervine. “I hope this hearing will be a turning point for our community.”

Time for Lyme,  the national Lyme Disease Association, and California Lyme Disease Association 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.

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