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Outdated Guidelines for Treating Lyme Disease Should be Removed from Government Web

Discussion in 'Lyme Disease and Co-Infections' started by *GG*, Jan 23, 2012.

  1. *GG*

    *GG* Senior Member

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    Concord, NH
    Site Used by Doctors as Resource for Medical Protocols

    Friday January 20, 2012
    Contact: Dan Scandling
    Joe McNulty
    (202) 225-5136


    OUTDATED GUIDELINES FOR TREATING LYME DISEASE
    SHOULD BE REMOVED FROM GOVERNMENT WEB SITE
    USED BY DOCTORS AS RESOURCE FOR MEDICAL PROTOCOLS

    Washington, D.C. (January 20, 2012) Three members of Congress who have worked to help people with Lyme disease want outdated treatment guidelines removed from a government Web site that doctors use as a resource for medical protocols.

    In a letter released today to the company that manages the National Guideline Clearinghouse (NGC), Rep. Frank Wolf (R-VA), Rep. Chris Smith (R-NJ) and Rep. Chris Gibson (R-NY) said the guidelines have not been thoroughly reviewed in over five years, a condition for inclusion in the database. They urged the company to remove the guidelines until they have been fully reviewed and revised.

    The Lyme disease guidelines of the Infectious Diseases Society of America (IDSA) have been highly controversial and have been responsible for insurance company denials of Lyme disease treatments, the congressmen wrote. We have recently been informed that these guidelines have been re-instated on the NGC Web site, notwithstanding the fact that they are more than 5 years old and, hence, are no longer current. Our constituents are concerned that these guidelines have not been subject to a complete review for currency and that the methodology of any review has not been disclosed as required by the NGCs guidelines.

    Below is the complete text of the letter:

    Vivian H. Coates, MBA
    Vice President, Information Services and Health Technology Assessment
    ECRI Institute
    5200 Butler Pike
    Plymouth Meeting, PA 19462-1298, USA

    Dear Ms. Coates:

    As your organization is currently contracted by the U.S. Department of Health and Human Services U.S. Agency for Healthcare Research and Quality (AHQR) to maintain the National Guidelines Clearinghouse (NGC), we write to you as representatives of areas that have a large and growing Lyme disease problem. Our constituents have again contacted us about an issue that needs immediate attention to protect their welfare.

    As you no doubt know, the Lyme disease guidelines of the Infectious Diseases Society of America (IDSA) have been highly controversial and have been responsible for insurance company denials of Lyme disease treatments. We have recently been informed that these guidelines have been re-instated on the NGC Web site, notwithstanding the fact that they are more than 5 years old and, hence, are no longer current. Our constituents are concerned that these guidelines have not been subject to a complete review for currency and that the methodology of any review has not been disclosed as required by the NGCs guidelines.

    Our understanding is that the recently re-submitted guidelines are based on the July 2010 Final Report of the Lyme Disease Review Panel of the Infectious Diseases Society of America, which specifically was not charged with updating or rewriting the 2006 Lyme disease guidelines. This aforementioned review panel was convened pursuant to an agreement between the Connecticut Attorney General and the IDSA to end the Attorney Generals antitrust investigation into the IDSAs 2006 Lyme disease guidelines. The 2010 panel recommended more than 25 revisions to the guidelines, which have not been addressed. We have been presented with considerable evidence that the NGC process, which requires that guidelines be reviewed for currency and disclosure of the methodology for the process, was not complied with before reinstating the guidelines until 2015.

    We urge you to follow NGC currency compliance procedure and remove the guidelines until they have been fully reviewed and revised. The mission of the NGC is to provide physicians and other health professionals, health care providers, health plans, integrated delivery systems, purchasers, and others an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation, and use. Only a careful and transparent procedure will remove the cloud that has hung over these guidelines.

    Thank you for your serious consideration. We look forward to your reply.

    Sincerely

    Rep. Christopher Smith
    Rep. Frank Wolf
    Rep. Chris Gibson

    http://wolf.house.gov/index.cfm?sectionid=34&sectiontree=6,34&itemid=1861
     
  2. *GG*

    *GG* Senior Member

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    Concord, NH
    Seems like if something happens with this, then we should be able to get the CDC website changed for ME and/or CFS?

    GG
     
  3. Wayne

    Wayne Senior Member

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    Ashland, Oregon
    Thanks much for posting this GG. It's nice to see this critical issue being given some political attention.

    Wayne
     

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