LYMEPOLICYWONK: Should the IDSA take a Tip from Toyota and Recall the Guidelines?

Dr. David Resnik at the University of Wyoming is a plainspoken public health care policy ethicist. When he describes the obligation that governments and others with positions of authority in health care have when communicating with the public, he may sound a bit like your mother. It is "to tell the truth, the whole truth and nothing but the truth". The obligation is to tell the public the information that they need to be able to make individual choices. This includes not exaggerating or preying upon fear to manipulate people-even if you do so with good intention. A recent case study, anecdote if you will, violates each of these tenets, one by one. . . More after the jump.

50% of the 272 speakers at the October 2009 IDSA annual meeting who disclosed conflicts, had ties to one or more of the five leading vaccine companies: Merck, GlaxoSmithKline, Sanofi Pasteur, Wyeth, and Novartis. Vaccine related financial ties with key members of the IDSA Lyme panel prompted the Connecticut Attorney General antitrust investigation into the development of the IDSA Lyme guidelines. Patients remain concerned about these interests because the IDSA guidelines placed commercial interests of vaccine manufacturers above patient care.

Lyme disease patients have trouble with insurance coverage. They have trouble getting health insurance if they have ever had Lyme disease, on the one hand. On the other hand, they have trouble getting the disease treated because insurers rely on the IDSA guidelines to take a "free pass" on treatment reimbursements. This is an area that is clearly governed by something other than providing quality health care to patients. Have you ever wondered what happens–really happens–when Lyme patient appeal an insurance denial? What happens is we succeed 9% of the time, while other diseases succeed 40% of the time. What is going on here? How can that be?

We are all concerned about the latest report from the IDSA statement that they plan to issue their final report regarding the IDSA guidelines review panel by the end of April. We are particularly concerned about whether the IDSA has corrected its voting violations. There may be other actions for the community to take as this unfolds, but right now, it is critical that we continue keeping the pressure on for other state AG’s to send letters to the IDSA (IMPORTANT: cc the CT AG) expressing concern about the voting violations and asking for compliance. Letters from legislators would also help spotlight the importance of the issue. Information on how to do this is posted on CALDA’s website along with the press release issued by CALDA, TFL and the LDA.

Over 6,100 responded to our IDSA survey within one month! That’s YOU being engaged. Everyone who has worked on this project has been deeply touched by your responses. In addition to answering our survey questions, over 1,700 patients offered their thoughts in a tiny comment box. I have to say, I was unprepared for the depth of responses offered. I know that those of us who reviewed the comments teared up. You may too.