Monday, March 1, 2010

IDSA NOT GOOD ON THEIR LYME DISEASE AGREEMENT


Blumenthal says group not complying with Lyme disease agreement


Written by Ken Borsuk, Staff Reporter Thursday, 18 February 2010 00:00
Connecticut Attorney General Richard Blumenthal has sent a warning shot across the bow of the Infectious Diseases Society of America (IDSA), saying he is concerned that it is not complying with terms of a settlement reached with his office over an antitrust investigation.

Mr. Blumenthal, a Greenwich resident and a candidate for senate, sent a letter from his office Feb. 1 claiming the Virginia-based organization did not appear to be honoring an agreement to have what he considered to be an impartial, fact-based review of guidelines for Lyme disease practices. The IDSA is an organization of physicians, scientists and health care professionals that specialize in infectious disease and its view that Lyme disease needs only a few weeks of treatment has come under fire from advocates claiming that it’s too narrow and doesn’t acknowledge the true scope of care and treatment needed.
Mr. Blumenthal said the IDSA appears to be violating an agreement made with his office last year after an investigation into the organization’s 2006 clinical practice guidelines for Lyme disease turned up what he called “significant procedural deficiencies” that raised the question of whether the best scientific and medical evidence were being used in determining those guidelines.
After agreeing to what is known as an “action plan” with his office, Mr. Blumenthal said the IDSA became obligated to essentially create a new review panel that would determine whether the original panel “got it right” in making its recommendations and then vote to determine whether simple changes should be made to the 2006 guidelines or if a whole new set of recommendations should be made.
As part of this action plan two levels of voting became required, the first to determine if the original 2006 recommendations were “medically and scientifically justified in light of all the available evidence collected through an open collection process” and the second then to determine whether revisions or completely new guidelines were made. But Mr. Blumenthal charges that a review of minutes and records of the review panel’s meetings determined that the principle vote on the medical and scientific justification of the original recommendations never took place and that instead the IDSA voted only on whether changes needed to be made to them, effectively skipping the first step to get to the second.
Mr. Blumenthal said that was not part of the agreement and therefore the vote was improperly done. He said there was no way to determine if changes had to be made since no one had studied the guidelines to determine whether they were justified in the first place.
The Greenwich-based Time For Lyme says that it supports Mr. Blumenthal in his efforts. Diane Blanchard, the group’s co-president, told the Post on Tuesday that there is “major concern” among advocates for Lyme disease that the IDSA isn’t using the best data for its positions and the effect that will have as a result.
“The IDSA is a very influential group not only in America but all over the world and it will affect hundreds of thousands of patients,” Ms. Blanchard said. “Other countries will follow what they do. This is a real concern.”
Ms. Blanchard said that the IDSA’s attitude toward Lyme disease is “fairly cavalier” because it says that its easy to diagnose and easy to treat even as data comes in saying just the opposite. Ms. Blanchard and Time For Lyme said that even though Lyme disease starts out as an infectious disease it spreads throughout the body, making it more of a disease that should be treated by general practitioners or a combination of specialists, not just infectious disease specialists.
Additionally, Ms. Blanchard said that IDSA’s stance has curtailed Lyme disease patient’s rights and their access to care and made it easier for insurance companies to deny more extensive care, something she said is “criminal.”
Mr. Blumenthal told the Post on Tuesday that he has not received a response from the IDSA to his letter. Any further action from his office, he says, will depend entirely on what kind of response is given.
John Heyes a spokesman for the IDSA told he couldn’t speak to any response that would be forthcoming from the organization, but confirmed to the Post that Mr. Blumenthal’s letter has been reviewed.
“IDSA knows its responsibilities under the settlement and the action plan and takes them very seriously,” Mr. Heyes said. “We are committed to ensuring the review panel does its work according to the requirements of the action plan.”


2 comments:

  1. It's been 3 long years since the AG's office began investigating the IDSA's Lyme guidelines process and the conflicts of interests of its authors.

    In the meantime, as the number of U.S. Lyme cases grows by about 30% per year, Lyme patients are trapped between a broken health care system and biased medical guidelines that are being used by insurance companies to deny treatment.

    We all hope that the AG pressures the IDSA to make swift and meaningful changes to their flawed guidelines.

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