LYMEPOLICYWONK: Artful Dodgers, 1,2,3 : the IDSA, the NIH and the IOM Makes Three

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.

There is a lot of flurry in the Lyme light about the IDSA recent letter in opposition to the physician protection bill pending in the New Hampshire physician protection legislation. This legislation follows on the heels of legislation already passed in California, Connecticut, and Rhode Island. Like breast cancer patients before them (who passed legislation in 20 states to secure the right to make treatment choices), Lyme patients are appealing to legislators to preserve their right to receive treatment for Lyme disease. The IDSA claims that its guidelines are not mandatory, but to my ears this sounds like double-speak. And, the newly elected President of IDSA, Dr. Whitley essentially admits as much when he complains about lab tests that are not “regulated” by the IDSA guidelines. What makes IDSA think that it has the “right” to regulate lab tests? Who says? How genuine is IDSA when it claims that its guidelines are really just “discretionary”? Come on, guys, one or the other, but you can’t play both sides of this issue with a straight face. Maybe we have to fall back to Lincoln or Bush, take your pick, about how many people you can fool.

The IDSA panel list has been revised to reflect the fact that Dr. Paul Duray has resigned from the panel. The IDSA does not post this type of information as a stand-alone announcement. Instead, they revise their prior notices. So you have to keep a close watch on their website for changes. What they did was add to his listing the following: Resigned from the Panel on October 7, 2009, due to a family illness. I am sure that everyone’s heart goes out to Dr. Duray and we wish him and his family the best during this trying time. Let’s light a candle for Dr. Duray and his family.

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.)

The Infectious Diseases Society of America’s new Lyme disease guidelines review panel will hold a one day hearing on July 30. This hearing is part of the antitrust settlement that the Connecticut Attorney General negotiated. Of the 18 speakers selected to testify, two are patient advocates, including me. The testimony will be aired live on the internet on July 30 so stay tuned.

STAND UP AND BE COUNTED

CALDA is conducting a survey of individual Lyme experiences to give you a chance to have input. Results of the survey will be included in my testimony to the IDSA panel.

Lyme patients take a lot of heat, frankly too much heat. Sometimes reporters make errors, don’t have enough facts, and aren’t fully informed. And that is rough. But it is even rougher when reporters are informed and given the correct information and then ignore half of it. So what do you do? Well, CALDA has written the Chicago Tribune protesting the highly biased reporting in its December 8, 2010 article on Lyme disease. We have asked them to publish an Op Ed piece by CALDA. We believe that reporters have an ethical obligation to report on stories in a balanced manner. They also owe it to patients to set out both sides of a scientific debate. To do otherwise, puts the lives and health of thousands of sick people in danger. What do you think? If you are interested in supporting this effort, please write the Tribune (emails below). Ask them to publish an Op-Ed by CALDA to set the record straight. A tip of the hat to Ellen and the NYC Lyme Activism group for their wonderful work on this project. More information after the jump. . .