LYMEPOLICYWONK: IDSA Hearings Delay has Lyme Patients on Tenterhooks

The patients who were not restored to health under the IDSA treatment protocol required additional treatment—treatment which the IDSA protocols prohibit.  Yet when these patients received additional treatment, according to the CALDA survey, they improved significantly.  More than 70% reported feeling much better or somewhat better with respect to fatigue.  Across the board, more than 60% of patients reported feeling much better or somewhat better with respect to headaches, muscle aches, joint pain, neuropathy, and concentration difficulties after receiving additional treatment.  Isn’t the message clear?  When treatment approaches fail, patients need alternatives and medical societies need to ensure that patients are granted treatment options under their guidelines.

You can follow additional comments on Lyme policy at www.lymepolicywonk.org.  You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.

Similar Posts

  • IDSA Virtual Lobby Now Open – VIEW LIVE WEBCAST

    The IDSA Virtual Lobby is now open (see link below). In addition, the IDSA has posted a terms of use on the virtual lobby–these terms are the IDSA's one-sided view of how copyright restrictions etc should play out. You do not need to read the terms before viewing the presentations and you SHOULD NOT. The IDSA is not entitled to post any restrictions on viewing, period, beginning and end of story. I would not want to give them any argument that people read their terms before viewing and the best way to ensure that is to simply not view the terms before viewing.

  • LYMEPOLICYWONK: Pat Smith’s Comment before IOM

    I am posting the written speeches of those who commented during the public comment period of the IOM. The speech below is that of Pat Smith, President of the national Lyme Disease Association, who addressed process issues with the IOM hearing and raised concerns regarding the lack of transparency of the process and the need for a greater opportunity for patients and other viewpoints to participate in the hearings. Her testimony is available as a downloadable pdf by clicking the link at the bottom of this blog post.

  • Stimulating distrust?

    On February 17, 2009, President Obama signed into law a stimulus program that includes $1.1 billion for comparative effectiveness research. The Partnership to Improve Patient Care, a coalition of patient groups, physicians and pharmaceuticals, warned that the research might be inappropriately used to “limit treatment options for patients.” A health care e-list that I’m on has become an active war zone on this issue. (Full disclosure—I am a combatant.)

  • LYMEPOLICYWONK: IDSA Voting Procedures under Review by the Connecticut Attorney General

    The Connecticut Attorney General is reviewing the IDSA report to determine whether the IDSA has complied with the terms of the antitrust Settlement Agreement. Attorney General Richard Blumenthal's initial review of IDSA voting procedures on the guideline recommendations found the IDSA violated the agreement by rigging the vote to favor no change in the guidelines. We have been informed that both Washington State Attorney General and the Attorney General in Pennsylvania have sent letters to the IDSA requesting that they comply with the Settlement Agreement voting procedures. In addition, US Legislator Chris Smith and US Senator Chris Dodd also wrote the IDSA expressing "deep concern" regarding the IDSA voting procedures. Faced with this scrutiny, the IDSA recast its vote on all recommendations to comply with the agreement–with a major exception. They refused to redo the vote on the one recommendation that required that diagnosis of Lyme could only be made if there is a positive blood test. This vote is critical because even under the initial flawed voting procedure the vote split 4 to 4 which means there was no consensus on the requirement that diagnosis be confirmed by positive lab tests. The Attorney General is currently reviewing the IDSA report to determine whether the IDSA has complied with the Settlement Agreement. The press release of the CT AG is set forth below. I encourage those concerned to contact the CT AG Office and let them know that you want the vote redone on the major issue of lab test confirmation for diagnosis. Details follow.

  • LYMEPOLICYWONK: A Question of Ethical Reporting–Chicago Tribune/Los Angeles Times.

    Biased reporting harms the credibility of journalism, harms patients, and misleads the public. The recent Tribune piece, which is now being republished in other Tribune outlets (including the Los Angeles Times) distorts and manipulates reality and makes a ‘good story’ at the expense of professional journalism. It does this by ignoring science, and by characterizing patients as hapless victims and their physicians as frauds. It was called to task for its profound lack of professionalism by Knight Science Journalism Tracker. Articles on science that do not present both sides of a legitimate controversy in science do a serious injustice and may violate the canons of journalist ethics established by the Society of Professional Journalism. Today, I look at some of those canons and point out how the Tribune article fell short. More after the jump. . .