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Thank you so much, Mr. Blumenthal

A press release from the Connecticut Attorney General's Office:  Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter.

From the article:
  • The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions. Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.

  • Under its agreement with the Attorney General's Office, the IDSA will create a review panel of eight to 12 members, none of whom served on the 2006 IDSA guideline panel. The IDSA must conduct an open application process and consider all applicants. The agreement calls for the ombudsman selected by Blumenthal's office and the IDSA to ensure that the review panel and its chairperson are free of conflicts of interest.
        Blumenthal and IDSA agreed to appoint Dr. Howard A. Brody as the ombudsman. Dr. Brody is a recognized expert and author on medical ethics and conflicts of interest and the director of the Institute for Medical Humanities at the University of Texas Medical Branch. Brody authored the book, "Hooked: Ethics, the Medical Profession and the Pharmaceutical Industry."

  • IDSA sought to portray a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings. In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines a the same time -- a violation of IDSA's conflicts of interest policy. The resulting IDSA and AAN guidelines not only reached the same conclusions regarding the non-existence of chronic Lyme disease, their reasoning at times used strikingly similar language. Both entities, for example, dubbed symptoms persisting after treatment "Post-Lyme Syndrome" and defined it the same way.
        When IDSA learned of the improper links between its panel and the AAN's panel, instead of enforcing its conflict of interest policy, it aggressively sought the AAN's endorsement to "strengthen" its guidelines' impact. The AAN panel -- particularly members who also served on the IDSA panel -- worked equally hard to win AAN's backing of IDSA's conclusions.

  • View the entire IDSA agreement - (PDF-2,532KB)
  • Here's another article posted to the LymeNet forums, and the reactions of the many patients who frequent there.  This investigation began soon after the revised guidelines were released back in late 2006, at which point diagnosis and treatment of Lyme disease was already a serious problem with many detractors.  I've met a growing number of people aside from myself who have struggled to get treatment for their Lyme disease, many of whom have yet to see even small success.  I cannot express how grateful I am that this investigation has proven successful.

    Thank you so much, Mr. Blumenthal.  Even if the good that should come of this doesn't, I am so very grateful for for the work you and your colleagues have done for us.  You need a Person of the Year award as far as I'm concerned.

    Comments

    ( 1 comment — Leave a comment )
    rmash1948
    May. 3rd, 2008 09:41 pm (UTC)
    ( 1 comment — Leave a comment )

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