LYMEPOLICYWONK: SIGN THE PETITION TO REMOVE THE IDSA GUIDELINES FROM THE NGC!

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?

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.

The IDSA Lyme disease guidelines review hearing on Thursday was an historic event both in medicine and in the Lyme community. It is the first time an organization has been required to hold hearings and review treatment guidelines that were created by a panel with conflicts of interest. It is also the first time that a broad debate of both sides of the Lyme controversy over diagnosis and treatment with physicians and researchers has been held.