CALDA sent this statement:Statement by Phyllis Mervine, President, California Lyme Disease Association, an affiliate of the national Lyme Disease Association
Two standards of care have arisen in the treatment of Lyme disease, both of which are reflected in peer-reviewed, evidence-based guidelines posted on the National Guidelines Clearinghouse (NGC) maintained by the US Department of Human Health Services. The guideline promulgated by the Infectious Disease Society of America (IDSA) specifies treatment for 30 days only and assumes that remaining symptoms that patients may have reflect a self-perpetuating autoimmune response. The International Lyme and Associated Disease Society (ILADS) guideline, in contrast, assumes that unresolved symptoms reflect on-going infection and gauge the duration of treatment by the patient's individual clinical response. Many, if not the majority, of physicians treat Lyme disease with a maximum 14-30 days of oral antibiotics based on the IDSA treatment guideline. In contrast, most patients with chronic Lyme disease are treated longer term in accordance with the ILADS guideline, frequently traveling great distances to their physician. The ILADS guideline also addresses the importance of diagnosing and treating co-infections documented in the literature.
Almost half the people (49%) responding to a CALDA survey assessing the impact of the CDC case surveillance definition had their diagnosis of Lyme disease delayed an average of 4.4 years because doctors misused the CDC surveillance definition for diagnostic purposes, contrary to the CDC's own admonitions. The misuse of the CDC criteria is primarily spurred by insurance guidelines, which favor cost containment at the expense of long-term health outcomes. Delayed diagnoses in Lyme disease allow the disease to progress from one that is generally treatable to one that is more resistant or unresponsive to treatment, with devastating consequences to the patient. Patients with delayed diagnoses usually need long-term treatment in order to regain health.
Once diagnosed, insurers hold patients to their cost-preferred treatment guidelines that permit only short-term treatment protocols. Patients who remain ill are forced to seek medical treatment outside their networks. This process is part of an effort by managed care organizations to intentionally encourage chronically ill patients to disenroll, leaving the organization's profitable base consisting of those individuals healthy enough to survive cost containment. Many such patients end up on state disability rolls.
In addition, some state licensing boards have commenced actions against the community-based Lyme disease experts who treat the majority of patients with persistent Lyme disease, alleging that their treatment protocols fall below the standard of care. While all such actions have found that two standards of care exist regarding the treatment of persistent Lyme disease, a spate of actions continues to be brought forward. Medical board actions pose a much greater threat to physicians than the threat of a civil malpractice action because (a) the consequences of a single action can destroy a career, (b) the due process protections are substantially weakened, (c) actual injury or damages are not required to prove the case, and (d) the cost of litigation is state funded. Beyond this, medical board actions are subject to misuse by special interest groups, like insurance companies, who use the anonymity to operate under cloak of darkness beyond public scrutiny.
Even when the investigating body hears cases and recognizes the validity of the standard of care used by the physician, these proceedings can still become tools for intimidation, as medical boards are known for holding physician's feet to the fire on ``basic medicine procedures.'' Few physicians survive the type of scrutiny unscathed, and the chilling effect of such actions has a ripple effect throughout the medical community, deterring many physicians from treating Lyme disease. This consequence is devastating to the Lyme community, which is already underserved medically.
Doctors who take on the challenge of a new, evolving and complicated disease should be supported, not persecuted. Doctors are increasingly unwilling to take on the challenges of not only a complex disease like Lyme, but also to risk collegial blacklisting, censure, and investigation by medical boards if their patients require more than three weeks of antibiotics. CALDA is sponsoring legislation that will protect doctors who treat people with persistent Lyme disease by providing that a physician and surgeon is not subject to discipline for unprofessional conduct solely for the treatment of persistent Lyme disease. CALDA also was instrumental in passing legislation that allows the state health department to add emerging diseases to their list of lab reportable diseases. The health department has agreed to add Lyme disease to that list.
Thank you for the opportunity to make this statement.
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