CASE OVERVIEW

In most respects, the Jones case is like many other cases brought by medical boards against physicians who diagnose and treat Lyme disease differently from the guidelines of the Infectious Disease Society of America (IDSA). There are, in fact, two schools of thought on how to treat Lyme disease; one promulgated by the IDSA and the other followed by members of the International Lyme and Associated Diseases Society (ILADS) . When a medical board action is initiated, typically by a complaint which may be filed by an insurer, a patient, or another doctor, it is referred out for initial review by an expert in the disease.

Where there are two standards of care, this initial review should be by someone who is familiar with both standards. Otherwise, the reviewer simply pulls the IDSA guidelines and says that the case is not in compliance with those guidelines. The critical point, however, is that the patient having been properly informed, selects the treatment approach that he or she wants to follow. Some states understand this, New Jersey and California, for instance. Other states like New York have taken officially advised their medical boards to not pursue actions against physicians who treat Lyme disease longer term. Some states have enacted physician protection statutes, like California.

Imagine what would happen if every case brought against a prostate cancer physicians were referred for review to a physician who only believed in watchful waiting? Obviously, surgery is more risky than watchful waiting, but it is the patients' choice that should carry the day here. Imagine what would happen if all cases brought against IDSA doctors were referred to physicians who followed longer term treatment approaches, for example the approaches recommended by ILADS physicians.

Most IDSA doctors (or at least those who follow IDSA protocols) do not treat long term, because the guidelines recommend against it. These physicians are not experienced in treating chronic Lyme disease patients who are effectively shuttled out of the office when the IDSA's short term approach fails. The IDSA is so powerful that it effectively has monopoly power to drive a medical standard of care in this country. The IDSA's Lyme treatment guidelines are put together by a research group that receives an enormous amount of federal grants and promote the results of their own research results heavily in their guidelines. They exclude input from treating physicians and patients as well as their own members who disagree with their agenda. Its recommendations frequently carry enormous weight with medical boards and insurers. This means that cases are frequently and unquestioningly referred to review by physicians who simply pull the IDSA guidelines down off the shelf and note that the patient was not treated in accordance with those guidelines.

What is at stake is patients' right to choose the treatment approach that they prefer based on their own unique situations. Most patients who are using longer term approaches have tried and failed with shorter term approaches. The other right at stake is the patients' access to health care. This has become a crisis for those with Lyme disease, who find it difficult to find a doctor--many travel great distances to obtain health care, some are forced to fly great distances to see a physician who will treat them. Each case that is brought against an LLMD affects that physician and all of the patients that that physician treats (and patients of doctors who consult with them). Even worse, each case has a chilling effect on the willingness of other physicians to treat Lyme disease. Doctor Jones has treated over 10,000 children. He is the only physician in the country with in depth expertise in treating children with Lyme disease. His loss to the community would be staggering.

The Jones case was initiated by a father involved in a custody dispute with the mother. The expert witness in the case for the Connecticut Department of Health is Eugene Shapiro, M.D., whose restricted IDSA oriented views are widely known.

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