LYMEPOLICYWONK: The CDC Definition of HIV: Does History Repeat Itself?

Those who attended the IDSA guidelines hearing were struck by the even-handed tone of the proceedings established by the Chair, Dr. Carol Baker. It was both unexpected and disarming, and not a small accomplishment given the polarity of the debate. At the same time, there was a feeling of cognitive dissonance—this was not the public face presented by IDSA President, Dr. Ann Gershon—who, in the face of the ILADS submission of over 1,600 pages of scientific evidence contradicting the guideline recommendations, steadfastly maintains there is no evidence of persistence. So what gives? Is this a case of “good cop/bad cop”? Are perceptions deceiving? Is this all a matter of managing public perception? Putting on a public face?

The IDSA hearing results were expected by the year end. Then were delayed—until “after the first of the year”. Perhaps the delay was caused by Dr. Duray’s resignation from the panel due to personal illness. We don’t know because we have not been told the reason for the delay or how long the delay will be. Patients are on tenterhooks awaiting the results and with good cause. Revision of the IDSA Lyme guidelines could make a world of difference for Lyme patients. According to a CALDA survey, 53% of patients with chronic Lyme have been treated according to the IDSA Lyme guidelines and 90% of these were not restored to health under the IDSA protocols. Isn’t the point of treatment guidelines to improve patient outcomes? And, if they don’t, shouldn’t they be revised?

Last week, I posted a blog regarding the IDSA stealth front organization, the American Lyme Disease Foundation (ALDF). I pointed out that the organization masquerades as a patient organization or an independent source of information, but is really just the members of the IDSA Lyme guidelines panel and a couple of businessmen. I highlighted the fact that Dr. Phil Baker who was responsible for overseeing the Lyme clinical trials at the NIH prior to his retirement is now the Executive Director at the ALDF. I also raised questions about his management of two NIH trials under his watch, the Klempner trial and the Embers trial. Both trials were funded around the same time. Klempner, which concluded that chronic infection did not persist and that treatment was ineffective, was published in 2004. Embers, which found persistent infection notwithstanding treatment, was not published until almost ten years later. During the interim, the Klempner trial was relied on by the IDSA to deny patients treatment for chronic Lyme and no one mentioned that the companion study, the Embers trial, was still pending. Dr. Baker took issue with my post (see below), and I respond.

Most of you know the hearing on July 30th before the IDSA hearing panel was about "contested recommendations" in the IDSA 2006 guidelines. These are recommendations and language in the IDSA guidelines that we contest or take issue with. They are important because they provide the road map for what the IDSA hearing panel must review. Contested recommendations must be evaluated by the panel. In order to remain in the guidelines, a supermajority (7 of the 9 panel members) must find that the contested recommendation is supported by the medical/scientific evidence presented at the hearing or otherwise submitted.