LYMEPOLICYWONK.ORG: When it’s a matter of opinion, whose opinion counts?

Some more light reading for those late nights when nothing is on the tube and you’re wondering how IDSA got ensnared in antitrust law with its Lyme disease guidelines. Just how flawed was its guidelines development process? Why is it important to democracy that opposing viewpoints be heard before vital freedoms—like your ability to choose among treatment options—are taken away. When do medical societies have an obligation to not suppress legitimate medical controversies? And, what is the drill for the settlement process anyway?

If you have comments on the article, send them to me at johnson.lorraineb@gmail.com

It’s easy to get confused. You have the “Lyme Disease Foundation” (LDF), and you have the “American Lyme Disease Foundation” (ALDF). They both sound like patient advocacy organizations, but they are not. Welcome to the world of astroturf organizations—false grass roots organizations where names are intended to sound alike and offer no hint of special interests behind them. Until its recent demise, the LDF was a patient organization that was founded in 1988. And, the ALDF? Well, the ALDF was founded in 1994. It is a stealth front group for the Infectious Diseases Society of America (IDSA). Stealth front groups are seemingly independent third-party organization designed to deceive audiences as to the sponsor’s actual intentions.

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.

I have been getting calls lately from patients who go to the website of the American Lyme Disease Foundation (ALDF), mistakenly believing it is a patient website. It’s not, and it’s easy to get confused. You have LymeDisease.org (LDo), the “Lyme Disease Foundation” (LDF), and the “American Lyme Disease Foundation” (ALDF). All three sound like patient advocacy organizations, but the ALDF is not.

Labor HHS 2010 appropriations language directed the National Institutes of Health (NIH) to“sponsor a scientific conference on Lyme and tick-borne diseases” and mandated that the conference represent the broad spectrum of scientific views…and provide a forum for public participation and input from individuals with Lyme disease.” Rather than conducting this review themselves as an NIH State of the Science conference as anticipated, the NIH subcontracted the work out to the Institute of Medicine. Looked at in the most kindly light, perhaps they regarded the Lyme controversy as “too hot to handle” or “not in my backyard”. A less charitable viewpoint would characterize the shunt to the IOM as “forum shopping”—a way of selecting a process that is most likely to favor a desired outcome.