Lyme Policy Wonk

If you have not read Pam Weintraub's Disappearing a disease: when guidelines are biased, patients suffer I suggest you take a breath and head over to her blog on Psychology Today. Pam Weintraub is the author of "Cure Unknown: Inside the Lyme Epidemic", the seminal book on the politics and science underlying Lyme disease. I recall telling a friend and attorney who simply did not understand why there should be a controversy when so many people were ill–why would any physician, those men in the white coats, deliberately leave patients ill, untreated, and without hope. Since when did medicine become a science of closed doors, double locked against the needs of patients?

The IDSA review panel has announced that the period for the public to submit information to ensure that all points views are taken into consideration is open. Submissions must be received by April 3 and should not exceed 5 pages. The public hearing date has been set as April 27th in Washington DC area. Information on how to apply to be a presenter will be forthcoming.

Some of you are aware that the original list of 10 panel members is now 9 because Weinstein was removed. For convenience, I am posting the current list of IDSA panel members with Weinstein removed.

Gooznews posted an interesting commentary on guidelines, conflicts of interest in guideline development and over reliance on expert panels when there are gaps in evidence. Merrill Goozner is a health care ethicist and this is not the first entry on his blog that has caught my attention. You might want to check it out. His post is premised on the recent article by Sniderman in the Journal of the American Medical Association (recent issue), which does a remarkably job outlining the problems with control in evidence based medicine, how "opinions" of the panel members are recharacterized as "science" in the form of evidence based guidelines. Some of the comments to Goozner's post are interesting. One person responds that "Evidence-based medicine has morphed into pharma-based medicine and HMO-based medicine". I thought Goozner's post was a good opportunity to point out some of the problems with the IDSA guidelines. My comment follows:

Arthur Weinstein's role on the IDSA's Lyme guidelines review panel was short lived. Today's list of panel members posted on the IDSA website excludes him. Patient groups were alarmed when he was included in the IDSA's panel list posted by the IDSA on Monday. Weinstein was at NYMC with Dr. Gary Wormser, who was the chair of the 2006 IDSA guidelines panel, which the Connecticut Attorney General investigated and found had been riddled with conflicts of interest , excluded divergent points of view and suppressed scientific evidence. Weinstein was a co-author on the Klempner study, on the safety monitoring board for the vaccines, and involved in the flawed western blot testing (Dearborn Conference). His removal from the panel is a step in the right direction for Lyme patients.

Many people have questions about the IDSA panel, its selection and where we are in the process. This posting I will attempt to answer some of the more common questions.

The IDSA panel list for the Lyme disease guidelines review panel were announced on Monday. The IDSA has a history of stacking its guidelines panels with like-minded experts and excluding divergent points of view. For patients this has meant limited or no treatment options. Imagine a prostate cancer panel of surgeons only—radiation, hormone treatment and watchful waiting might no longer be viable treatment options. How well-informed would surgeons be of alternatives to surgery? After the antitrust investigation launched by the Connecticut Attorney General, the IDSA was forced, as part of its settlement agreement, to have its 2006 Lyme disease guidelines reviewed by a new panel. The 2006 panel was riddled with conflicts of interest, exclusion of divergent viewpoints, and suppression of scientific evidence. (Click on title to read full article.)

Everyone is entitled to their own opinion. So why do we care about bias in medical guidelines? Because opinion should not dictate patient care. Think of the prostate cancer patient who sees the surgeon who recommends surgery, the radiologist who recommends radiation treatment, and the internist who recommends watchful waiting. Everyone knows that one’s position depends on where one sits. The surgeon may genuinely prefer surgery and when he recommends it to his patient, the patient realizes that he is, after all, talking with a surgeon and that surgeons are likely to favor surgery. He also knows that he can walk down the street a bit and talk with the radiologist and get his perspective. The point is that even though the patient is given conflicting advice, at the end of the day the decision is his. He chooses among treatment options and the physicians respect his decision. This is called autonomy—a recognition that patients are entitled to make choices among health care options.