Today I got the expected letter from my insurance company, denying treatment with Rocephin beyond the initial 30-day period. I knew this was going to happen, and I've lined up a supply of the drug and accompanying supplies. While still expensive ($500 - 600/month), it's way cheaper than continuing with the infusion service I began treatment with.
My insurance company explains the denial of coverage as follows: "The clinical rationale is that the length of therapy requested exceeds the recommended duration of treatment for any manifestation of Lyme disease based upon Infectious Disease Society of America (IDSA) guidelines."
If you haven't read about the Connecticut attorney general's investigation into the IDSA, this is worth reading. The doctors who set the guidelines that my insurance company uses to deny my coverage, they also can get paid by insurance companies to consult on cases like mine so that the insurance company deny coverage and save money. Conflict of interest, no?
The IDSA claims they will revisit their guidelines (the review hearing has already taken place) and announce any changes by the end of the year. I don't expect anything to change. They've got an interest in maintaining the status quo. And, frankly, I don't hold much faith in any organization who could say the following: "In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection." [Emphasis mine.]
Yep, they're saying that any symptoms that remain after a month of treatment are clearly something other than the original infection. (Which is like saying that if your sinus infection doesn't go away after 30 days, then you don't have a sinus infection. You've got something else. Or maybe just the aches and pains of daily living.)
Somehow I doubt that memory loss and severe cognitive impairment in a 31-year-old woman is related to the "aches and pains of daily living." But then again, I'm probably just making it all up. Or I'm crazy. Or something. Sigh.