LYMEPOLICYWONK: Video of Dr. Stricker’s MyLymeData Conference Presentation

This is a chart of the relative importance of different stakeholders to big Pharma. (Click chart to enlarge.)
I was really struck by how little weight patients were given (9%) compared to specialists (47%) and compared to key opinion leaders (21%).
So if you take specialists and add key opinion leaders to that, 68% of drug companies thought that key opinion leader who are specialists would have the
most influence on their company over the next 2 years. Wow! And, look at the lowly role of the general practitioner

The IDSA recently reaffirmed its beleaguered Lyme guidelines with a panel it selected of IDSA members. (Aren’t we all surprised?) Turns out the CDC can’t be quick enough to endorse the IDSA after the IDSA vindicated itself. Overly clubby, don’t you think? The IDSA’s cavalier dismissal of 1600 pages of peer reviewed evidence rebutting its guidelines recommendations actually took my breath away. Now, it seems that the NIH is handing the “hot potato” of a “state of the science” review of Lyme disease that it is mandated to do by law to an “independent” government group, the Institute of Medicine— which, also, surprise-surprise, is composed mostly of IDSA members (according to my sources 4 of 6 members), in what seems like a saga of deniable accountability. (I would so love to be wrong on this.)

Now that two studies have shown that IDSA guidelines are generally long on opinion and short on evidence, what should the IDSA guideline panel do? The study by Lee, discussed in yesterday's blog, found that IDSA frequently makes strong recommendations, but that these strong recommendations are supported by strong evidence only 15% of the time. Dr. Maloney found that the majority of recommendations in the IDSA Lyme guidelines were based on the weakest level of evidence–expert opinion. Shouldn't clinical judgment only be suppressed when there is strong evidence? That's what the American Academy of Pediatrics says in its guidelines on making guidelines.

I suppose it was inevitable. The IDSA, due to inattention (hey, it happens with age), lack of oversight, control, or, shall we say, “iron fist” over its members, permits not one, but TWO poster sessions at its last annual meeting that point out that—drum roll—the IDSA guidelines across the board (not just Lyme guidelines) are just—well, not based on science or evidence for the most part. Thomas File, the author of this article, is on the board of the IDSA and he is with Summa Health System: He takes the IDSA defense and explains why evidence is not necessary for evidence based guidelines..

I am posting the written speeches of those who commented during the public comment period of the IOM. The speech below is that of Helene Jorgensen, the author of “Sick and Tired: How America’s Health Care System Fails Its Patients”. Helene Jorgensen presented her own encounter with Lyme disease and addressed the flaws in the clinical treatment flaws to date. Her testimony is available as a downloadable pdf by clicking the link at the bottom of this blog post.