Weintraub to IDSA: Listen to the steady heart beat of true science, leave the past behind, and move toward the future
If you have not read Pam Weintraub's Disappearing a disease: when guidelines are biased, patients suffer I suggest you take a breath and head over to her blog on Psychology Today. Pam Weintraub is the author of "Cure Unknown: Inside the Lyme Epidemic", the seminal book on the politics and science underlying Lyme disease. I recall telling a friend and attorney who simply did not understand why there should be a controversy when so many people were ill–why would any physician, those men in the white coats, deliberately leave patients ill, untreated, and without hope. Since when did medicine become a science of closed doors, double locked against the needs of patients?
I told him “We’re not in Kansas anymore, Toto”. Medicine has taken a sharp left turn as researchers, insurers and other vested interests grabbed for their share of the pie. In the economic equation, patients truly are all but invisible. Unless strong pharmaceutical interests push for treatment, the interests of insurers prevail. In Lyme disease, the pharmaceutical have an interest, but it is not in treating. The real monied market in Lyme disease is in vaccines and the research interests funded are for vaccines. Little wonder then that the researchers who are experts in this arena have little interest in patient needs. Vaccines are about the much larger pre-patient market.
Weintraub makes a passionate plea for those on the panel to listen to the steady heart beat of true science, leave the past behind, and move toward the future:
The panel has been reconstituted, but patient groups don’t have much faith it will expand its vision or open its mind. Already an effort to prosecute treating doctors has been pursued in Connecticut. The rubber stamping of the narrow old guidelines is anticipated far and wide.
Yet as the new panel gathers, I’d like to make a plea: This time examine, really analyze, the science. New research published in major journals from the Proceedings of the National Academy of Sciences to Emerging Infectious Diseases challenges the current panel conclusions. Do not turn a blind eye.
Is the new panel up to the task? Can they ignore the dogma of the past? Bias has no place in medicine. In truth, the IDSA guidelines are more opinion than science, with 39 of 72 (54%) of their recommendations based on the lowest level of evidence–opinion. A number of the panel members are known to have walked in the door with a predisposition towards denying patient treatment options, others are known to have strong IDSA affiliations. One can only hope that patient care does not get relegated to the back seat in deliberations and that recommendations are based on science, not beliefs.