TOUCHED BY LYME: When teenagers have Lyme disease
Dealing with Lyme disease and other tick-borne infections is a miserable ordeal at any age, but it offers unique challenges when the person going through it is a teenager.
Author | LymeDisease.org
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Weintraub to IDSA: Listen to the steady heart beat of true science, leave the past behind, and move toward the future
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?
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Lyme panel: Selection and exclusion bias
Most patients who write me share my concern about the composition of the IDSA panel, and with good cause. Our reasons for concern are two-fold. We are concerned about who was selected for the panel. And, we are concerned about who was rejected from the panel.
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TOUCHED BY LYME: Lyme in them thar zip codes
A steady stream of responses has flowed into my email box regarding my previous blog post “No Lyme in (your zip code here).” What follows are quotes from your different emails:
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IDSA Lyme Disease Review Panel Announces Public Input Period and Hearing Date
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.
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IDSA guidelines panel list as of 2/1/09
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.
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Lyme Organizations: New IDSA Guidelines Panel, Unbalanced & Biased: Congressman and Patient Groups Voice Concerns
Greenwich, CT, January 28, 2009-Patient groups voiced concern and disappointment about the new Infectious Diseases Society of America (IDSA) Lyme disease guidelines’ panel, which excludes physicians who treat patients with chronic Lyme disease. Last May, the Connecticut Attorney General found the IDSA Lyme disease treatment guidelines’ panel had conflicts of interest, engaged in exclusionary conduct, and suppressed scientific evidence. The investigation resulted in a settlement forcing the IDSA to reconstitute a balanced panel free of conflicts of interest under the oversight of an ombudsman to monitor conflicts of interest. No input from patients or treating physicians was permitted in selection.
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TOUCHED BY LYME: A whole ’nother ballgame
In the chaotic early days of my daughter’s illness, when we trying to make sense of her bizarre symptoms and the equally bizarre reactions we were getting from the medical establishment, I didn’t want to read about the history and controversy surrounding Lyme disease. I just wanted somebody to figure out what was wrong with her and fix it.
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Lyme Organizations: New IDSA Guidelines Panel, Unbalanced & Biased Congressman and Patient Groups Voice Concerns
Greenwich, CT, January 28, 2009-Patient groups voiced concern and disappointment about the new Infectious Diseases Society of America (IDSA) Lyme disease guidelines’ panel, which excludes physicians who treat patients with chronic Lyme disease. Last May, the Connecticut Attorney General found the IDSA Lyme disease treatment guidelines’ panel had conflicts of interest, engaged in exclusionary conduct, and suppressed scientific evidence. The investigation resulted in a settlement forcing the IDSA to reconstitute a balanced panel free of conflicts of interest under the oversight of an ombudsman to monitor conflicts of interest. No input from patients or treating physicians was permitted in selection.
Greenwich, CT, January 28, 2009-Patient groups voiced concern and disappointment about the new Infectious Diseases Society of America (IDSA) Lyme disease guidelines’ panel, which excludes physicians who treat patients with chronic Lyme disease. Last May, the Connecticut Attorney General found the IDSA Lyme disease treatment guidelines’ panel had conflicts of interest, engaged in exclusionary conduct, and suppressed scientific evidence. The investigation resulted in a settlement forcing the IDSA to reconstitute a balanced panel free of conflicts of interest under the oversight of an ombudsman to monitor conflicts of interest. No input from patients or treating physicians was permitted in selection.
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Medical antitrust actions–Does “might make right”?
Antitrust law is concerned with constraints of trade that foreclose consumer choice. Guidelines developed by medical specialty societies that have monopoly power (like the IDSA) can become de facto legal standards for the practice of medicine. When they foreclose treatment options and the exercise of clinical judgment, they constrain consumer choice.
Typically, laws are passed in the United States through a democratic process that allows many groups to have a voice in the law before it is passed. Antitrust laws make an exception to guidelines or standards that are developed by groups that have expertise in an area (for instance, computer chips and medicine) so long as they play fair. The reason for this exception is that the level of expertise required in these areas makes it reasonable for "experts" rather than laymen to be setting the rules.
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