At the Gala

LymeDisease.org and the national Lyme Disease Association filed comments on behalf of 67 patient groups across the nation. LymeDisease.org also launched a patient survey on March 28 to solicit patient views. It drew more than 5,500 responses. We included findings from the survey in the formal comments we filed with the IDSA.

Most guidelines panels are heavily populated by academics. Why is that? Take the IDSA guidelines Lyme disease panel in 2006—all academic researchers. Researchers are good at science, but what about medicine? Does good science make good medicine? Not necessarily.

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.

Have you ever noticed how the IDSA says one thing, but really means and does another? For instance, how they say that their guidelines are there to protect patients when in fact they amount to medical abandonment? They are so stringent that sick patients are left completely without treatment options? Or how they say they are all about scientific evidence when in fact their guidelines are based primarily on expert opinion–the expert opinion of researchers with commercial ties to vaccine manufacturers, Lyme tests, and insurers? Or how they say their guidelines are not mandatory, but their members enforce their guidelines by testifying at unprofessional conduct hearings and the IDSA opposes physician protection legislation that would essentially make compliance with their guidelines truly voluntary? Or how they say they are worried about doctors who treat chronic Lyme making money off of sick patients, but they are not concerned about conflict of interest on their guidelines panels? This is called double speak. Saying one thing, doing another. George Orwell described this type of practice "newspeak"–words "deliberately constructed for political purposes: words, that is to say, which not only had in every case a political implication, but were intended to impose a desirable mental attitude upon the person using them." I'd say we could all use a little more plain talk.

Today, the Institute of Medicine released a new report “Clinical Practice Guidelines We Can Trust”. I haven’t read the entire report (217 pages), but this emphasis on the word trust is important. Lyme patients have a number of complaints with the treatment guidelines developed by the Infectious Diseases Society of America. Mainly, we don’t trust them. Over 80% of the roughly 4,000 respondents to CALDA’s 2009 survey said that they would not choose to be treated under IDSA guidelines. That’s a boatload of dissatisfaction and distrust. Chief among the complaints about the IDSA guideline development process was that the panel was not balanced and excluded those who would be most affected by the guidelines—patients with chronic Lyme and the physicians who treat them. The IOM new report seeks to change this by recommending involvement in the guidelines process by “clinicians and populations expected to be affected by [the guidelines]” and by recommending that a patient or patient advocate be represented in the guideline development. That’s welcome news.