CT Attorney General versus the IDSA

Back in 2006, the Infectious Diseases Society of America (IDSA) published new practice guidelines for Lyme disease. These caused a bit of a stir in that they blatantly disregarded the significant body of scientific evidence relating to Chronic Lyme disease. In effect, the IDSA took the increasingly untenable position that Chronic Lyme did not even exist. This was devastating to the Lyme community, providing the insurance industry with just what it needed to further marginalize Lyme patients.

The position taken by the IDSA was so incomprehensible, that the Attorney General (AG) of the State of Connecticut took the unprecedented action of investigating the IDSA. The result? The State's antitrust investigation concluded that there were "serious flaws" in preparing the guidelines. In a May 2008 press release, the AG stated "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding Chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science." In an agreement reached with the IDSA, a new conflicts-free panel will be convened to review the guidelines. The new panel will be selected by a mutually-agreed-upon ombudsman. None of the original panelists will be permitted to participate.

Good news, right? Well, in spite of the investigation's successful outcome, the IDSA continues to downplay the whole event, maintaining their process is both "rigorous and transparent". But consider the following. In March 2008, the IDSA lobbied against a bill that would promote improved Lyme prevention, education, treatment, and research activities. Why? Because of "the bill's repeated references, overt and implied, to a condition that has been described inaccurately as 'Chronic Lyme disease'." The position in their letter to the US Senate is abundantly clear -- "the notion that some spirochetes can persist despite conventional treatment courses... is microbiologically implausible." Contrast that with this statement from ILADS: "There is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete." Somebody's out to lunch here.

And reading the IDSA's May 2008 press release, coinciding with the one from the AG's office, one could be forgiven for concluding these two press releases are referring to completely different events. Despite the clearly stated criticisms by the AG, the IDSA denies any wrongdoing whatsoever, and looks forward to putting to rest these "unfounded" assertions. You are encouraged to visit the press release on the IDSA's website, as it provides a convenient opportunity to give your opinion about what they are doing -- just scroll to the bottom of the page and click the score of your choice. You can even add a comment... vent a bit, you'll feel better for it.

Finally, just in December, Infectious Disease News (a medical newspaper for Infectious Disease Specialists) included Settling of the Lyme case with the Connecticut AG in it's Top 10 stories of 2008. In reference to the pending rework of the guidelines, the newsletter's Chief Medical Editor says "I don't expect [the reworked guidelines] to be significantly different...". Nice to see more of the "rigorous and transparent" attitude reflected in this publication.

Ok -- that's all in the United States. What's that got to do with Canada? Quite a lot actually. In the absence of substantive Lyme guidelines in Canada, our medical establishment relies heavily on US guidelines such as those from the IDSA. In correspondence between CanLyme and Canada's top Public Health Officer this past autumn, Public Health's Dr. Butler-Jones states "It is my understanding that the [IDSA] guidelines remain in place during this review process, and we should not prejudge any of the conclusions." So in spite of "serious flaws" in their preparation, the best advice to our medical community is to stay the course; in other words, for now we'll keep letting Canadians fall through the cracks in our medical establishment.

A new glimmer of hope has appeared recently. In subsequent correspondence from Dr. Butler-Jones to several Lyme patients, his more recent talking points have changed somewhat. He now states "The Public Health Agency of Canada is currently drawing up a structure for writing and reviewing revisions to the original guidelines, as recommended by the report of the 2006 meeting." This is in reference to the National Lyme Disease meeting held in 2006 in which CanLyme representatives participated. The Public Health Agency of Canada has neglected to follow up on this conference's recommendations to date. Very similar wording is found in recent correspondence from our new Federal Minister of Health, the Honourable Leona Aglukkaq. The letters do commit to a process to include opinions of stakeholders and advocacy groups. This is critical for its success -- otherwise it is likely we will simply see a repeat of what happened with the IDSA in 2006. You are encouraged to write to both our Chief Public Health Officer and the Federal Minister of Health to make sure this happens in a meaningful way.

Here is hoping that 2009 holds good health for us all, and that we will finally see much needed change in our medical system with regard to Lyme and Chronic Lyme disease.

Happy new year!