Friday, October 23, 2009

In denial

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.


  1. Hey again.

    I completely agree with you that there's conflict of interest at IDSA, and when I was researching lyme it bothered me too (and still does). Of course, conflict of interest doesn't prove wrongdoing or incorrect conclusions, as the CT A.G.'s document admits.

    That quote about "aches and pains" certainly sounds apallingly dismissive. All I can say is that after talking to several mainstream doctors last yr about lyme, most of them were not nearly so dismissive. Their position was that they believed I was sick, but that there wasn't sufficient evidence that I had lyme, or that lyme was causing my symptoms even if I did have it. Maybe that was wrong, maybe it was right. But the good ones didn't think I was making it up. (I did run into 1 or 2 bad ones.)

    My impression is that both sides of the lyme debate tend to accuse the other side of holding extreme positions and motivations they don't really hold. It was eye-opening for me when I started tracking down and reading journal articles written by docs on the IDSA/CDC side of the fence. There was more "there" there than the more vocal critics on the ILADS side would have led me to believe.

    This article: was sent to me last yr by a public health doc, a very open-minded and non-dismissive guy. He didn't tell me I didn't have lyme, just wanted me to have some mainstream research to look at. I thought it was helpful at laying out that side's position, and unraveling some of the rhetoric. The tone is overly strident in places, but I think they make clear where some real differences in approach/philosophy/conclusions are, apart from politics. I thought the follow-up letters and response were also very interesting:

    I don't think either side has a monopoly on the truth, and I don't think either side is an opressive force uninterested in patient welfare.

    Anyway, once again please accept my wishes for your improved health.

    Matthew in Bellingham

  2. I have very little understanding of how insurance works.

    But obviously you have some virus in you which is causing you grief. I believe you also have test results to show that. Can a doctor stop calling this a Lymes and just call it infection and prescribe you medications for that? Seems like most of the medications you are having are common with most other infections.

    Wishing the best for you.

  3. Have you been tested for the retrovirus that has recently been linked with chronic fatigue syndrome?

    The only thing they can find wrong with me (fainting, fatigue, vitamin deficiencies) is Celiac disease. Bleah. I mean, if that's all it is, I can live with no gluten in addition to no dairy. Hooray, easy fix. But I'm not looking forward to eating out ever again.

    Keep fighting!

  4. Anon--Lyme disease is a bacterial infection, not a virus. But point taken. Sadly, insurance companies require a diagnosis in order to pay for treatment.

    Kathy--I haven't been tested for the retrovirus yet. The news about it broke just after my last doctor appt. I imagine we'll be discussing it next time I see him. However, I also imagine that, for now, the goal will be to kill off the bacterial infections and hope that then my immune system will have a better shot at fighting viruses (EBV, HHV6) and maybe the retrovirus, if I have it.

  5. hi. so sorry about your denial. it's unsurprising but infuriating every time.

    can i ask, how do you get IV abx for 500 or 600 a month? that's insanely cheap (relatively speaking, anyway). if you're not comfortable answering here, please feel free to email me at letlovebe(at)gmail.

    thanks so much, and best wishes with your treatment.

    peace & healing,
    (a fellow lyme-warrior who just moved to seattle from nyc) :)

  6. Heather-- My LLMD has found a good supplier in town (Rxtra Care Pharmacy) that sells the ceftriaxone powder vials with vials of sterile water for injection. This is much cheaper than buying pre-mixed.

    You have to mix the solution yourself, but that's not hard. Add in the cost of syringes and needles (to do the mixing, not injecting, because I've got a PICC). Then add in the cost of PICC dressing change kits. And I think it comes out to somewhere around $500 - 600 per month.

    It kind of depends on what supplies I eventually decide I prefer, mostly in dressing kits and sterile gloves.

    To get exact numbers, I spent $457 on a one month's supply of ceftriaxone powder, sterile water for injection, syringes, needles, saline for flushing the line, and heparin lock solution.

    Dressing kits are about $15 - 20, and I change the dressing once per week, or more often if needed.

    I also bought a case of sterile gloves because the ones that come in the dressing change kits don't fit my husband's hands.

    The downside to all of this is that I'm not using the infusion service. So no home nurse visits. My husband has to do the dressing changes himself. Still, it's pretty cheap, relatively speaking.