PUBLIC INPUT needed for NEW IDSA guidelines!!!!!

Discussion in 'Lyme Disease Archives' started by victoria, Feb 4, 2009.

  1. victoria

    victoria New Member

    IDSA Lyme Disease Review Panel Announces Public Input Period and Hearing
    Blog: Lyme Policy Wonk - By: Lorraine Johnson, JD, MBA Executive
    Director California Lyme Disease Association

    February 2, 2009

    IDSA Lyme Disease Review Panel Announces Public Input Period and Hearing Date

    The IDSA review panel has announced that the period for the public to submit information to ensure that all points views are taken into consideration is open. Submissions must be received by April 3 and should not exceed 5 pages. The public hearing date has been set as April 27th in Washington DC area. Information on how to apply to be a presenter will be forthcoming.

    Full story:

    I just read this from another list... now I'm depressed:

    Patient groups voiced concern and disappointment about the new
    Infectious Diseases Society of America (IDSA) Lyme disease guidelines'
    panel, which excludes physicians who treat patients with chronic Lyme
    - -
    Lyme Organizations: New IDSA Guidelines Panel, Unbalanced & Biased;
    Congressman and Patient Groups Voice Concerns
    See the original story at:
    Greenwich, CT (PRWEB) February 2, 2009 --
    Patient groups voiced concern
    and disappointment about the new Infectious Diseases Society of America
    (IDSA) Lyme disease guidelines' panel, which excludes physicians who
    treat patients with chronic Lyme disease. In May 2008, the Connecticut
    Attorney General found the IDSA Lyme disease treatment guidelines' panel
    had conflicts of interest, engaged in exclusionary conduct, and
    suppressed scientific evidence. The investigation resulted in a
    settlement forcing the IDSA to reconstitute a balanced panel free of
    conflicts of interest under the oversight of an ombudsman to monitor
    conflicts of interest. No input from patients or treating physicians was
    permitted in selection.

    "This situation is déja vu all over again," said national Lyme Disease
    Association president Pat Smith about the newly created guidelines'
    panel. "All Lyme disease treating physicians who applied for a seat were
    denied, based on having a "conflict" if they made over $10,000 treating
    Lyme disease. They have confused helping patients get better with 'real'
    competing conflicts such as interests in testing and vaccines, and
    relationships with insurers?a profile found in the original panel.
    Physicians who treat understand what makes patients well."
    Attorney Lorraine Johnson of the California Lyme Disease Association
    points out "The problem is that guidelines conclusions generally reflect
    panel composition. That is why it is critical that a panel be balanced
    and include different points of view. Excluding the point of view of
    physicians who treat chronic Lyme disease makes no sense and biases this

    The current IDSA guidelines recommend against treating Lyme disease more
    than a few weeks, against using specific types of antibiotics, against
    alternative treatments and even supplements. The guidelines are so
    restrictive that physicians are not permitted to use clinical judgment
    in diagnosing or treating Lyme patients. The new panel will review
    controversial recommendations in the guidelines to determine whether
    there is sufficient scientific support for the recommendation.
    According to Diane Blanchard, Co-President of Time for Lyme in
    Connecticut, "Treating physicians must be allowed to make clinical
    judgments about their patients' conditions due to the complexity of
    tick-borne diseases, and there are a number of physicians out there
    nationwide who are knowledgeable enough to recognize the effects of
    coinfections on diagnosis and treatment. Some have been treating for
    over 10-20 years and have tens of thousands of hours of experience
    seeing patients; yet, these physicians were not selected."
    US Congressman Christopher Smith (NJ) co-chair of the House Lyme Disease
    Caucus, told the patient groups "The Settlement Agreement of the IDSA
    requires a balanced panel with a variety of experiences, including
    clinical experience in treating patients with Lyme disease. I share
    concerns raised about exclusion of physicians who treat persisting Lyme
    and the composition of the panel. I know I am joined by colleagues in
    Congress in the hope and expectation that the reassessment of the Lyme
    disease guidelines will be conducted with the highest levels of
    integrity and expertise. Nothing less will protect the rights and
    welfare of patients. We will continue to monitor this ongoing process."

    The three groups are still hopeful, however, that the panel will take
    their responsibility seriously, since they have within their grasp the
    chance to improve the diagnosis and treatment for Lyme patients
    everywhere. Patients are counting on them to ensure that the weight of
    the science is evaluated fairly, which would be reflected in new
    standards that provide help for thousands of children and their families.
    The groups feel patients should be provided with treatment options,
    including the use of long term antibiotics, to fight the disease, which
    has a disability equivalent to that of congestive heart failure. As in
    other areas where science is emerging, patients should have choices, and
    the exercise of clinical judgment by treating physicians should be
    encouraged. Studies of chronic Lyme disease show a failure rate of 26%
    to 50%, using the short-term antibiotic approaches currently advocated
    by IDSA.

    ABOUT: The national Lyme Disease Association,
    the California Lyme Disease Association,
    and Time for Lyme
    are non-profit organizations that were
    founded by individuals who had personal experience with Lyme disease in
    order to address the lack of education and support services available
    for this newly emerging infection.


  2. Nanie46

    Nanie46 Moderator


    Thanks for posting this. You should read Pam Weintraub's latest article/blog in Psycology Today titled "Dissappearing a Disease". It addresses the IDSA's review panel and the absurdity of the way the process is being conducted.

    The chances of anything changing are slim considering the IDSA has way too much control over all aspects of this review. No doubt it will come out in their favor.

    It is sickening to see how skewed it all is and how so many are suffering for it.

    As a poster on another site said...he thinks nothing will change unless all the IDSA docs and insurance co. execs are locked in a room with millions of infected ticks and they all become very ill themselves!!!!!!!
  3. mrdad

    mrdad New Member

    Ya know, Gitmo will be available rather soon. How about there?

  4. Daisys

    Daisys Member

    I figured they'd do something like that. The only way for this disease to get research and insurance support is for the powers that be to come down with lyme disease themselves and find out how miserable it is, and how hard it is to get treatment.

    I would've sent my input, but my computer warned me not to allow it in if I didn't trust the site, and my husband and I don't trust them. I wouldn't be surprised if they misinterpretted the information or tried to use it against the team who have helped me get better. Sorry, I know they need to hear from us, so hopefully folks will show up at the hearing. That stands to make more impact anyway, seeing the people themselves.