Posted by: thatjen | September 14, 2005

A (s)Tick in the Eye

Remember last week when I said there was bad news on the horizon about Cait’s Lyme treatment? Well, I didn’t know how bad. At the time, I thought we might have to pay about $1500 a month out of pocket to continue the one drug that has shown any signs of working. That now seems like chump change. For the next week alone, we’ve been told we need to pay $854 for the drug, plus at least $90 for nursing supervision. Which, multiplied out, is more like $4000 per month.

After you get your breath back, you may ask “Why?” (Possibly in less polite terms. God knows I swore a blue streak when Cait first called.)

…slight interruption – I am, as usual, multitasking. I’m on the phone with various companies trying to haggle, sell my soul, alter my citizenship, or otherwise find a better price. And I was just on the phone with one of those online Canadian pharmacies with a slightly CLUELESS operator who said, “Oh, that’s 27.38 for 100 grams,” — 50 days worth — at which I practically began crying tears of joy. And then she said, “Oh, that’s the wrong medicine. Sorry. It’s $385.85 for 10 grams.” And I wanted to puke…

Anyway, back to why. Well, the reason is our stupid medical care system. Our insurance will no longer pay for the drug — the ONLY thing that has worked for her in the past three years — because she’s been on it too long. Does this make any sense? Not to me.

We’ve tried the patient assistance program from the drug manufacturer. Nope. Cait makes too much money. Well, at this price, we’d have to pay almost $52,000 for a year’s worth of this drug. Let me tell you, Cait, a public school teacher, does NOT make anything near that amount.

So I am fuming, and scared, and frantically researching anything I can to see if there’s a way to make this work.

I HATE our health care system. It only works if you’re healthy. And wealthy.


  1. Healthy, wealthy, and never have any kind of medical emergency.

    Good thoughts for good financial happenings for you. Ugh. đŸ˜¦

  2. OH FOR F*** SAKE. That’s the STUPIDEST F****ING thing I have ever heard. I wish I could do something for you. My brain has been turned to mush by HOW STUPID that is. I’m so sorry, sweeties.

  3. fuck, fuck, fuck! OK – turning the thinking cap on…

    what’s the name of the medicine?

  4. My outrage is as raw as yours. My father has been unable to walk for the past 5 months, but he refuses to see a doctor because he doesn’t have health insurance and can’t pay a doctor to find out what’s wrong. It makes me want to just….ARGHHHH!!!! This is such bullshit that Cait or anyone should have to suffer because of the greed of others. GRRRRRRRRRRRR.

  5. What?? Excuse me, but I am having some difficulty undertsanding this, probably because I’m not from the US. If this medication seems to be working, why would they stop paying for it?? Also, I know you don’t have a universal health care system like we do here, but doesn’t the State pay for some of it, at least? I have to take a medication for my Chron’s disease and the State pays 90% of it…

    I hope you can find a way, really, because this situation sucks!

  6. I get it – How awful for Cait, and for both of you! Any chance of switching plans during open enrollment or is it this or nothing?

  7. !@#$%!!!!!!!!!



    (I’m at work. My computer might explode if I type expletives on it. But you get the picture.)

  8. There are so many dimensions to this I can’t even explain it all. We’re actually LUCKY to have gotten as much coverage as we have – technically our insurer’s policy is to pay for 4 weeks of this therapy, period. Ever. Over the life of the policy. And they’ve paid for 16 now for Cait.

    I think that even if we had socialized medicine we might be in this boat, because doctors are still trying to figure out how Lyme works and what to do about it. Their “reasoning” is that there’s no scientific proof that this regimen will help. Basically, science hasn’t caught up with the disease yet, and that leaves us in the lurch.

    I have no idea if switching policies would help – it’s an interesting idea – though my gut says it would not.

    Anyway, the frantic investigations continue. We’re now looking at buying the medicine in, um, third-world countries. No joke.

  9. I am so sorry. I have always had psoriasis and not all the meds are covered. And no medical insurance will ever touch it so there are treatments I cannot even try, regardless of how bad it becomes. Our health system is a disgrace as well, Ana is lucky. We have people being finally called for surgery years after they’ve died.

    I am so sorry, you truly did not need this worry now, or the expense of it.

  10. I’m sure you’ve probably thought of this already, but with the new Medicare Modernization Act, there are some new prescription drug discount cards and benefits available to people, even if they already have their own health insurance. I’d suggest checking out and click through to their Prescription Drugs and Other Assistance Programs link and see if there is any extra help you can get there.

  11. Arrgh! That’s just ridiculous! I assume this is Rocephin? Geez.

    Mexico might be a good option. Or sometimes pharmacies in New Zealand have good rates on strange things. I wonder about having a compounding pharmacy make it up for you? Hmmm… If I have a bright idea, I’ll let you know!

  12. That is some sucky ass news, girls. I’m very sorry to hear it.

    It’s the rare thing in this world that is as illogical and wrong-headed as our health care system.

  13. warning potential assvice ahead…
    In my recent experience, I have found dogged persistence to work.
    I have just recently wrought from my insurance company two treatments that they considered too expensive and not medically necessary. I was able to beat them at their own game by going through their on-line medical protocols and giving them a lesson in rhetorical analysis. I called their medical officers each day with new protocol information from medical journals. My HR rep called every other day and insisted that a written daily up-date on the case be faxed to her office. My doctor’s office called twice a week. After 12 days the insurance company caved. My doctor’s office said that no one has forced the company to capitulate on these treatments in the past.

    Viscious pursuit of your insurance company might help.

    Best of luck.

  14. That is just insane. I so hope that someone helps you figure something out. I wish I had thoughts but the only time I had this issue I was uninsured and on disability, which is completely different game to play. It is totally ridiculous that people without health insurance are sometimes better off than people with it.

    Thinking positive thoughts!

  15. I don’t have anything to add, aside from yet another person registering her disgust. $52K/year?!?! That is absolutely insane, and it is shocking that things like this can still go on.

    I hope you find a viable solution.

  16. Kelly and Sam set up a “contribute to our IVF” button – perhaps you could also do a contribute to Cait’s Meds button – I’d give, and I bet others would, too!


  17. I have been reading your blog for a few months now and always look forward to your new posts.

    Don’t know if you are interested in alternative treatments of Lyme disease, but I am currently working with a Naturopath/Acupuncturist in Portland, OR who is having a lot of results treating Lyme. She treats it with Cat’s claw. Have you heard about it? Most of her patients have high Lyme titers and then after 6 – 9 months of treatment their syptoms are significantly reduced and their titers are much, much lower. It is a bit expensive, but nothing like what you are looking at with your lovely insurance.

    If you would like more information, let me know. Hope I am not overstepping the bounds of a lurker by letting you know about this. I just didn’t want to not say anything when maybe it could help.

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