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428506 tn?1296557399

IDSA review: Decision against long-term treatment

Today it was reported that the conclusion of the 2009 review of the IDSA guidelines-which support the "Lyme is hard to get, easy to cure" philosophy, is that no changes in the guidelines are warranted.

This is a blow in that it means many patients will continue to not meet the strict diagnostic criteria, and even if they do, they will often only receive the short-term treatment described in the guidelines.

http://www.newstimes.com/news/article/National-panel-concludes-chronic-Lyme-doesn-t-459159.php

http://www.businessweek.com/lifestyle/content/healthday/638398.html


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1210011 tn?1281472365
What it looks like is that the IDSA review panel took it upon themselves to instead recommend changes be made to the next edition of the Guidelines touching on some 20-odd points of concern for examination for the next review in a couple year.
Thus a backdoor admission that something was rotten in Denmark (aka "the process"). I really don't know how they voted passed the hurdle of the extreme insensitivity of available testing when it does not meet the standard criteria to be used as a diagnostic tool - yet the guidelines refer to it as such. I suppose it may have something to do with good faith or lack thereof.

What The Report means IRL, is another flawed process (2) succeeds to further reinforce flawed process 1, making matters worse for people who are suffering from lyme now as well as in the future.

Blumenthal is currently reviewing the IDSA panel's final report to determine if they complied with the terms of the agreement.

_______________________________________________

Connecticut Attorney General's Office

Press Release

Attorney General Statement On IDSA Guidelines Review Panel Report

April 22, 2010

         “My office is reviewing the IDSA’s reassessment of its 2006 Lyme disease guidelines mandated by its agreement with my office. The IDSA agreed to review its Lyme disease guidelines after my office uncovered credible evidence of undisclosed conflicts of interest and other significant flaws in the process that produced the guidelines.

“We will carefully and comprehensively assess the final report and the review process leading to that report to determine whether the IDSA fulfilled the requirements of our settlement.”
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428506 tn?1296557399
Press Release

FOR IMMEDIATE RELEASE:

IDSA panel sticks to its 2006 treatment guidelines despite scientific evidence

Washington, D.C. April 23, 2010  Monte Skall, Executive Director of the National Capital Lyme and Tick-Borne Disease Association said, “It is a sad day for all patients when medical experts turn their backs on medical research when making treatment recommendations.” Skall refers to the fact that the panel of experts that reviewed the guidelines agreed that all of the 69 original recommendations were medically and scientifically justified while ignoring the large body of research that has found prolonged antibiotic therapy to be effective.

Carol J. Baker, MD, chair of the IDSA's Lyme Disease Review Panel, said, “The final report includes more than 1,000 citations.” Nonetheless, the review panel could not point to a single study that supported their recommendation that antibiotic therapy should be withheld from patients who continue to be sick.

Medical societies develop treatment guidelines for a long list of diseases. Insurance companies look to restrictive treatment guidelines to determine which treatments are covered. Treatment that falls outside the guidelines is deemed “experimental” and typically not covered. The I DSA Lyme Disease Review Panel was created as part of a settlement with the Connecticut Attorney General. An investigation found serious flaws in the IDSA’s process for writing its treatment guidelines, including various undisclosed conflicts of interest. The controversial treatment guidelines recommend against re-treatment of Lyme patients who fail the recommended treatment, despite a lack of research supporting their claim that additional treatment is ineffective. Two studies (Fallon et al. 2008 Krupp et al. 2003) found that Lyme patients benefited from additional treatment.

NatCapLyme is disappointed with the result of the IDSA's review of its treatment guidelines. Significant evidence, clinical experience, and expert opinion were presented to the specially appointed IDSA panel to demonstrate that carefully administered long-term antibiotic treatment was beneficial in providing significant relief to many victims of tick-borne disease. The panel erred in turning its back on these impressive submissions in favor of continued reliance on studies and conclusions that have been soundly criticized for their own shortcomings and biases.
There is no justification for relying on flawed science for continuing its recommended guidelines and arming insurance companies to deny health benefits to insured Lyme victims. If the panel was not prepared to recognize the studies that support longer courses of antibiotic treatment for chronic sufferers, it should have included a call for continued scientific study of this topic among its suggestions. It is time for the IDSA doctors to stop defending their reputations and get back to the work of helping sick people to get well.

Skall said, “It is our hope that treating clinicians will continue to exercise good judgment and treat patients based on their experience of what works for them in the clinical environment. Rote obedience to a treatment guideline based on flawed studies is not good medicine.”
The National Capital Lyme and Tick-Borne Disease Association will issue further statements after it has had an opportunity to study the IDSA report in greater detail.
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1210011 tn?1281472365
I 2nd what Jackie said.

but also I feel that it will makes matters worse for us, actually.
That this faux review panel report will make the climate for access to treatment all that much worse. Esp. in states where there are no doctor protection laws.

There is also the possibility that it will spur people into action who otherwise would not have and it could cause change for the better. I still don't think it will be anytime soon. The political road ahead will not be a short one.
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Avatar universal
Thanks for posting this, Wonko.

All I can say is, 'Gee, what a surprise.'  Sigh.
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428506 tn?1296557399
CALDA's (California Lyme Disease Association) take on the situation:

http://www.lymedisease.org/news/lymepolicywonk/402.html
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