Monday, August 3, 2009

IDSA Hearing on Lyme - Washington, DC

Last Thursday, July 30th, 2009, was a historic day. A hearing took place in Washington DC to consider a broad range of medical opinions with regard to Lyme disease. This hearing came about as the result of another historic event -- the antitrust lawsuit that the Connecticut Attorney General brought against the Infectious Diseases Society of America (IDSA). The Attorney General's investigation identified potential conflicts of interest with regard to the original Lyme guideline panelists and serious flaws with the way in which those guidelines were prepared. And in a 2008 settlement, the IDSA agreed to complete a review of its Lyme disease guidelines, including seeking input from a broad range of stakeholders both in written form and through a 1-day invitation-only hearing.

By year end, the IDSA expects to make public its intent with regard to the 2006 Lyme guidelines -- whether they will stand as is, or be modified in part or in whole. The complete video record of the 1-day hearing, which was broadcast live online during the event, is expected to be available through the IDSA website this week. In the meantime, the IDSA is making all of the presentation materials available for download. The presenters included:
  1. Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, AZ PDF
  2. Lorraine Johnson, JD, MBA, California Lyme Disease Association (CALDA), Ukiah, CA PDF
  3. Daniel Cameron, MD, International Lyme and Associated Diseases Society (ILADS), California PDF
  4. Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD PDF
  5. Ben Luft, MD, The State University of New York, Stony Brook, NY PDF
  6. Allison Delong, MS, ILADS & The Center for Statistical Sciences, Brown University, Providence, RI PDF
  7. Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
    1. Slides PDF
    2. Statement PDF
  8. David Volkman, MD, Nissequogue, NY
    1. Slides PDF
    2. Statement PDF
  9. Sam Donta, MD, Falmouth, MA PDF
  10. Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven, CT PDF
  11. Brian Fallon, MD, Columbia University Medical Center, New York, NY
    1. Slides PDF
    2. Statement PDF
  12. Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY
    1. Slides PDF
    2. Statement PDF
  13. Ken Liegner, MD, ILADS, Armonk, NY PDF
  14. Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA PDF
  15. Steven Phillips, MD, ILADS, Wilton, CT PDF
  16. Arthur Weinstein, MD, Washington Hospital Center, Washington, DC PDF
  17. Raphael Stricker, MD, ILADS, San Francisco, CA PDF
  18. Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NYPDF
This hearing has added to the year's already heightened media focus on Lyme disease as an "emerging epidemic", as it has been referred to by the CDC. Below is an example of recent coverage by ABC News. This particular coverage is noteworthy in that the medical correspondent (Dr. Marie Savard) was herself a Lyme patient not long ago.

Here is a press release issued by the International Lyme and Associated Diseases Society (ILADS) regarding the IDSA hearing, titled HISTORIC HEARINGS ON MOST CONTROVERSIAL DISEASE IN U.S., LYME DISEASE: SPOTLIGHT ON A HIDDEN EPIDEMIC.

In a Greenwich Time article published late last Thursday, Connecticut Attorney General Richard Blumenthal said he felt the hearing in Washington, D.C., on Lyme disease treatment guidelines that he helped bring about, was "unprecedented" and set a standard for transparency and fairness in crafting medical recommendations.

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