LYMEPOLICYWONK: Institute of Medicine Cuts on the Bias for IDSA
Finally, the Institute of Medicine (IOM) came out with its agenda for their “State of the Science Hearing”after much hemming and hawing. Patient groups (including CALDA) who asked for transparency in the study process received a mere “no comment” response. Well, we never got transparency, and we only got the agenda after it was finalized and released to the public. So, here’s the score: its 3 for 3 in the ‘Final Inning’ in favor of the IDSA.
Four of the 6 IOM panel members are IDSA members.
10 of the 14 physician speakers were authors on the IDSA guidelines or the copycat guidelines issued by members of the IDSA panel or members of the IDSA.
Zero ILADS physicians have been chosen to speak. Let me repeat: ZERO, zip, nada, not a single ILADS physician was chosen to speak!
Dr. Gary Wormser, poster boy of the Connecticut IDSA antitrust investigation, is kicking off the game.
Oh, there’s window dressing to be sure. A personalized tour of the Agenda after the great leap forward. . .
Let’s look at the agenda in terms of the key topic areas—those where each speaker gets 25 uninterrupted minutes to record their position on a subject.
- State of the Science for treatment in Lyme disease: Dr. Wormser, past-chair of the IDSA guidelines panel, is one of the key Lyme researchers with a vested reputational interest in his research. In a kick-off and frame-the-issue time slot– he’s first up. No opposing viewpoint will be presented. (How’s that for balance?)
- Diagnostic issues: Dr. Maria Aguero-Rosenfeld, IDSA guidelines author who, until recently, worked with Dr. Wormser at NYMC, AND has well established polemic views. No opposing viewpoint will be presented. (Now I’m getting uncomfortable for sure.)
Ten of the speakers are past-authors of the IDSA guidelines (or copycat guidelines) or are current members of the IDSA. [By way of background, the Connecticut Attorney General found that the guidelines of the American Academy of Neurology (AAN) were essentially copycat guidelines of the IDSA put out with panel members from the IDSA guidelines with the intent of creating an appearance of “independent corroboration” of the IDSA guidelines. Since then similar overlapping guidelines have been developed, including those published in the New England Journal of Medicine (NEJM). Another bread crumb for the detail oriented, IDSA fellow hold a higher ranking within the IDSA than other members.] Here is the detail:
- Dr. Gary Wormser (IDSA fellow and panel member of guidelines by: IDSA, NEJM, and AAN
- Dr. Peter Krause (IDSA fellow and panel member of guidelines by: IDSA, NEJM ad hoc international working group)
- Dr. Stephen Dumler (Panel member of guidelines by: IDSA, NEJM ad hoc international working group)
- Dr. David Weber (IDSA fellow)
- Dr. David Walker (IDSA fellow)
- Dr. Maria Aguero-Rosenfeld (panel member of IDSA guidelines)
- Dr. Richard Jacobs (IDSA fellow)
- Dr. Linda Bockenstedt (panel member of following guidelines: IDSA panel, NEJM ad hoc international Lyme disease working group)
- Paul Mead (member of the NEJM ad hoc international Lyme disease working group)
- Dr. Susan O’Connell (member of NEJM ad hoc international Lyme disease working group)
These people who have an established viewpoint biased toward the IDSA constitute 10 of the 14 physician speakers. The remainder of the speakers consists of patients, vets, ecologists, pathologists and epidemiologists.
Contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.
Any chance of going back to the original impetus for this and addressing it at that level, that we want a balanced approach including both standards of care, ie including ILADS pov?
This is going to be a sham game.
This is a mockery: not at all what the federal appropriations language instructed. The Institute of Medicine's website stated, "The workshop will represent the broad spectrum of scientific views on Lyme disease." Yet not a single ILADS physician will speak? OUR tax dollars are paying for this one-sided affair! Someone should be fined for wasting tax dollars during this recession.
Why do they appear to be afraid to invite those with opposing viewpoints and scientific data to present and debate with them, if they are so confident that they are right?
And all that time in June we southeasterners spent preparing and speaking by teleconference with the IOM panel members who were planning the agenda for October's Lyme conference? Wasted. Our comments seem to have fallen on deaf ears. Despite advocates from South Carolina, Kentucky, Tennessee, Georgia, and Florida spending 1-1/2 hours describing to the IOM panel members how thousands of southeastern patients are coming forward with Lyme disease here (where Lyme isn't supposed to be!) and how our cases are dismissed, unrecognized, and not counted, not a single southeastern advocate was invited to address these issues at the actual conference. In fact, I don't see any advocate from a so-called "non-endemic" area on their agenda for the October conference, at all. Who will address this issue of drastically under-reported case numbers due to the very unusual state reporting practices and the misdiagnoses caused by these flawed statistics? This problem poses a serious health threat – doctors see low case numbers and think Lyme is rare in a region, never guessing that reporting practices are completely different than in the Northeast.
If the conference includes discussion about how to prevent it, the presence of Lyme and other TBDs must be acknowledged first. As we told IOM panel members, our southeastern medical providers need to be better educated about tick-borne diseases. I choose to believe that the IOM members didn't listen to us, because, surely it cannot be that they don't care whether our citizens are being disabled by unrecognized, misdiagnosed Lyme?
How can IDSA devise cookie-cutter guidelines for a disease that presents differently in each individual?
If they can't decide on guidelines, um, after some embarrassing-long 30+ years (re Lyme disease & tick-borne diseases in general) maybe they should try something more creative???
Maybe a legitimate scientific conference where both sides are at the same table, actually listening to each other, etc.
I guess that's just another delusion I have.
But, seriously: No other disease takes 30 years to be recognized and then semantically dismissed by a panel of so-called, self-annointed "authorities".
I hate to tell you this Lorraine but here it comes. I am working with a scientist that is working on better testing for Lyme disease and other tick borne diseases.
I asked him if he was considering to go to the IOM presentation has he had been invited: His response "Unfortunately these meeting tend to be policy focused and not scientific."
The IOM meeting came out of a mandate from congress for a balanced, transparent process for developing a hearing to discuss “a broad spectrum of scientific views” leading to new directions for Lyme disease research. It makes sense for patients to contact their Congressmen to alert them to the fact that this process has been corrupted and the federal dollars allocated for this hearing are being misused.
I attended the conference.The speakers were all researchers who have studied Lyme, Babesia, Erlichia, Anaplasma. They each spoke briefly on the findings of their past research and made recommendations for the direction that they thought research should take in the future. It was 18 grueling hours of reports with some time for questions and comments. The focus was on acute not chronic disease. There was no discussion of treatment guidelines. I learned alot and am grateful that I was able to witness it.