IDSA Virtual Lobby Now Open – VIEW LIVE WEBCAST

Labor HHS 2010 appropriations language directed the National Institutes of Health (NIH) to“sponsor a scientific conference on Lyme and tick-borne diseases” and mandated that the conference represent the broad spectrum of scientific views…and provide a forum for public participation and input from individuals with Lyme disease.” Rather than conducting this review themselves as an NIH State of the Science conference as anticipated, the NIH subcontracted the work out to the Institute of Medicine. Looked at in the most kindly light, perhaps they regarded the Lyme controversy as “too hot to handle” or “not in my backyard”. A less charitable viewpoint would characterize the shunt to the IOM as “forum shopping”—a way of selecting a process that is most likely to favor a desired outcome.

I’ve been getting a lot of email lately about the IDSA. Most of it is about the voting issues, but some of it is about other things they have done to “game the system”. Here’s a list of the top 10 questions patient ask me about the IDSA that begin with the word “why”? As Mark Twain says, “few things are harder to put up with than the annoyance of a good example”—or in this case, ten good examples of why the Lyme community should question the advice to “trust us, we’re the experts” when it comes to the IDSA. Let me know if you think there are any “whys” I left off the list.

One of the problems with the IDSA reviewing its own guidelines is that it is not an independent process. The IDSA selected the panel, paid the ethicist, and sets the ground rules. And, now we have the IDSA manipulating the voting process to achieve a goal–protection of the IDSA professional reputation–that conflicts with the goal of providing quality patient care. Think about it. The vote on the lab test requirement for diagnosis was 4 to 4. 4 to 4 means there was NO consensus. Yet the IDSA chalked this up as a victory on its side by ignoring the two step vote requirement and flipping the supermajority vote in its favor. The IDSA is essentially saying 4 to 4 means the IDSA wins on this point. To the fox guarding the chicken coop, this makes perfect sense. Let me drill down into the detail so that what the IDSA did here is clear.