LYMEPOLICYWONK: ILADS Calls on IDSA to Remove Barriers to Lyme Guideline Change
Responding to patient concerns, the President of ILADS, Dr. Robert Bransfield today delivered a letter to the IDSA calling upon the organization to remove barriers to guidelines change. The letter follows patient complaints to ILADS about the IDSA voting process, which were uncovered by the Connecticut Attorney General in the oversight of the IDSA Lyme guidelines review process. According to the Attorney General, the voting process used by the IDSA was in violation of the terms of the antitrust Settlement Agreement. The Attorney General has called upon the IDSA to redo the vote using the proper voting procedures. Text of the ILADS letter follows the jump.
You can read the background on the AG letter to the IDSA here.
February 5, 2010
Richard J. Whitley, MD, FIDSA
Infectious Disease Society of America
1300 Wilson Boulevard
Suite 300
Arlington, VA 22209
Dear Dr. Whitley:
Patient organizations have raised new concerns that the IDSA Lyme guidelines review panel might not address the needs of individuals with Lyme disease. These organizations had hoped that their written and oral submissions to the IDSA review panel would lead to changes in the 2006 IDSA Lyme guidelines regarding diagnostic and therapeutic options aimed at benefitting individuals with Lyme disease. Instead, the IDSA panel appears to be ignoring the proper voting procedures, thus making it harder for necessary changes in the guidelines to occur.
ILADS is concerned that the existing IDSA Lyme guidelines do not reflect the best available scientific and medical evidence for many patients with Lyme disease. To date, the limited clinical trials sponsored by the National Institutes of Health have validated the severity of chronic manifestations of Lyme disease 4.7 to 9 years after onset. ILADS has concluded that the current IDSA Lyme guidelines do not offer sufficient diagnostic and treatment options to improve the outcome for these individuals with Lyme disease.
ILADS has raised concerns that physicians experienced in treating Lyme disease based on divergent evidence and dissenting opinions were excluded from the 2006 IDSA Lyme guidelines review panel. IDSA also excluded these physicians from membership on the current guidelines review panel if they reported more than $10,000 income per year treating Lyme disease. The review panel made this decision despite the fact that, as a general rule, practicing clinicians participate in guidelines formulation for other conditions.
ILADS presented the divergent evidence and dissenting opinions about Lyme disease in July 2009 to the review panel, including 300 pages of analysis and over 1,300 pages of relevant peer-reviewed research. ILADS respectfully requests that you ask the review panel to remove any barriers to panel members who might recommend diagnostic and treatment options aimed at improving the outcome for individuals with Lyme disease.
Sincerely,
Robert Bransfield, MD, DLFAPA, President, ILADS
You can follow additional comments on Lyme Policy at lymepolicywonk.org. You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org
lorrine,
thank you for posting the ilads letter to idsa regarding the review panel upcoming vote. we appreciate it.
lorraine, i've NOT seen the letter or whatever showing us the vote was taken to be 50-50; can you post that too?
we're hearing about this thru calda and lda's pat smith, and i've read every bit of what you 2 have sent.
great 18 pages of info from yesterday or so.
thanks for keeping us updated; we appreciate it.
bettyg, iowa lyme activist
Betty
The process for vote taking is described in the Action Plan–which is part of the antitrust Settlement Agreement, which is attached to the letter by the AG that I posted yesterday. Hope this helps–it's in that packet.
Lorraine
lorraine, so it's 2 different things here. it's summarized in ACTION PLAN, part of antitrust settlement agreement.
there is NOT anything in 18 pages showing the review panel voted and it was even numbers vs. an odd number.
now i understand; thanks lorraine.
iowa lyme activist
If a further panel member were to leave for any reason – what would happen – as a minimum of 8 members are needed to constitute a chorum?
Why is it that doctors who make > $10,000 annually on treating Lyme disease were excluded? Is that because they are presumed to be specialists and perhaps have a vested interest in the outcome of such things? That would make sense, but I'm just curious what the reason officially is.