ldoadmin

Recently, a group that writes guidelines asked for my input about the role of patients in the development of Evidence Based Medicine guidelines. With universal healthcare now ‘the law of the land’, treatment guidelines have become even more important. Preserving the integrity of the guideline development- process is what matters most. It is essential that patients play a role in the process that can so affect their lives. The question posed to me was why should those developing guidelines involve patients? My response follows.

The Minnesota Board of Medical Practice (MBMP) has agreed to a five-year moratorium on the investigation, disciplining or issuance of corrective action based solely on long-term prescription or administration of antibiotic therapy for chronic Lyme disease. Minnesota joins a growing list of states that provide physician protection either through legislation or agreement, including California, Connecticut, Rhode Island, and New York. The MBMP took the action as a compromise to prevent pending physician protection legislation from passing. Any way you look at it, it was a good day for Lyme patients in Minnesota.

I have gotten a lot of reports from patients that Medco is refusing to dispense antibiotics because of the IDSA guidelines. At $51 Billion, let me repeat that $51 BILLION, dollar in revenue, Medco is the nation’s largest drug dispensing company. And, just for the record, they are over-riding the treatment recommendation of the treating physician and replacing it with, oh yeah, the IDSA “expert opinions” on treatment. This isn’t evidence based medicine, this is “eminence based medicine.” Their mission is to help “clients control the cost and enhance the quality” of prescription benefits. Looks like the IDSA is their friend. Complaints about Medco using these tactics have been becoming more frequent suggesting that this is not an isolated case and may be an across the board policy? If so, its reliance on IDSA guidelines to deny treatment across the board will have a serious adverse impact on patient lives.

Another run away Prius hit the news today. I have one (first year). I share these concerns. Is this car safe? Should I really be driving it? Have they recalled my model? It made me think about the IDSA Lyme guidelines a bit. Why haven’t they recalled these guidelines? They actually harm patients. The real risk to patients is not that they will have the risk of a reaction to their antibiotics, it is that they will be treated under these guidelines. That they will remain ill. That the diagnosis will be missed. That the treatment when it comes will be too little, too late. That the medical society responsible for the high, high treatment failure rates will do nothing more than circle the wagons around their self interests. That patients matter less than vaccine and diagnostic test patents and preserving the reputation of a medical society that does not even have patients on the agenda.