If you have not read the recent article by Brenda Patoine, "Guideline-Making gets tougher: Action by state attorney general over Lyme disease guidelines stirs debate, " I recommend you do. It is a good reminder that reporters can still do the in depth coverage of complex issues and hold their ground on reality based reporting.
How is it possible for the IDSA to have a public guidelines review on Lyme Disease hearing date set for April 27th when it hasn’t notified speakers that they will be speaking at the hearing? When it hasn’t even selected speakers? When it hasn’t even posted applications for speakers on its website? When it hasn’t reserved a room for the event? You’d think this group had never held a conference before—but wait— it holds annual conferences! So this organization KNOWS how to prepare for and hold a big event that will have a number of speakers; it knows how to reserve a room; and even how to select speakers and give them time to prepare. In fact, it has already worked out all of these details for its own annual meeting in October, which is more than 6 months away. They have a list of speakers, the assigned topics and reserved facilities— the whole nine yards.
Merrill Goozner at Gooznews cites a recent JAMA article by Tricoci showing that nearly half of the recommendations in treatment guidelines are not based on clinical trials, but rather, are based on no more than the expert opinion of those on the panel. This leads to the rather obvious conclusion that evidence based medicine is largely bankrupt. Only 11% of recommendations for heart disease were based on multiple randomized trials.
In response to concerns raised by patient's organizations and physicians about the document submission process–which initially tried to limit submissions to five pages–the IDSA has changed its document submission process. The IDSA is now requesting that submissions be 10 pages or less with an acknowledgment that they will consider all submissions regardless of length. For a submission to be considered by the panel though it must specify what recommendation is being contested. This is because the scope of this panel is simply to consider and weigh the scientific evidence for contested recommendations.
A recent article by Sniderman and Furberg, “Why Guideline Making Requires Reform” is a remarkably…
On February 17, 2009, President Obama signed into law a stimulus program that includes $1.1 billion for comparative effectiveness research. The Partnership to Improve Patient Care, a coalition of patient groups, physicians and pharmaceuticals, warned that the research might be inappropriately used to “limit treatment options for patients.” A health care e-list that I’m on has become an active war zone on this issue. (Full disclosure—I am a combatant.)
How is it that one week JAMA publishes an article by Sniderman and Furberg, "Why Guidelines Require Reform", on the urgent need to for guideline reform and the next week they publish a piece by Kraemer and Gostin, "Science, Politics and Values", that could have been written by a PR firm for the IDSA, berating the Connecticut Attorney General for trying to accomplish just that?
A recent publication authored by Feder and correspondence to that publication defined the 'Axis of Evil' in this controversy as physicians who treat patients with needlessly prolonged courses of antibiotics, 'specialty laboratories' that perform 'inaccurate' Lyme testing and the internet, which promotes 'Lyme hysteria'. Dr. Stricker and I published a counter article taking on each of the three elements of the "Axis of Evil", one by one (Future Microbiology, Volume 3, Number 6, December 2008 , pp. 621-624(4)). While this version of the article is available on Pub Med, the full version (which contains footnotes) is available for purchase by the publisher Future Science .
On February 2, 2009, the IDSA announced the opening of the 60-day public input period. The period expires at 5 pm on April 3, 2009. While many issues remain to be sorted out, this posting presents some of the currents Q&A issues that patients are raising.
In another post, I pointed out problems with the composition of the IDSA panel—namely, that the IDSA panel is biased toward the IDSA perspective because physicians who treat chronic Lyme were entirely excluded and some of the panel members have known biases. A number of patients have contacted me who want to do something. This post will let you know who, what, and where you can write to have the best chance of getting your voice heard.
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