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I don't have $6,000 a month, are you kidding?


In my last blog I discussed Transplants! I really hope everyone saw the stories/videos I shared about two CFer's Tranplants! I wanted to discuss something more serious, since lately I hadn't talked about anything CF too much.     Then I received this in the mail:

Nothing new, just insurance not wanting to pay for a Med!


I have been on Tobi since I was a teenage! It is highly effective with CFers who have Psuedomonas Aeruginosa (the only CF bug I have). And my doctor, and many other doctors believe it in rotation with Cayston (the newest nebulizer) can greatly help our lung function. I have been on Cayston and Tobi alternating months now, for at least 2 years. We (my doctors and I )both believe these two nebulizer treatments together are really contributing to my improved lung function (over 20% increase)! I'm up to 61% and now, because there isn't enough research supporting the two together, they won't allow it.

I love the part (where I highlighted) that says " future studies will hopefully explore the question whether the combination of them is more efficient than current treatments... But today, these studies haven't been performed yet..."

So, in other words, hopefully, one day you can prove they are helpful and will save other lives, but until you can prove they will save you, we won't pay for them, so good luck on your lung function.

Well, this isn't over! My doctor is amazing and has gotten my insurance to pay for  MANY prescriptions they have been refusing!

Dear Insurance Companies,
I'd be careful, if These "future tests" do reveal that the combo of treatment improves lung function then:
 1. By denying us them, we are probably going to get sicker, costing you hospital stays, long term oxygen, etc. 2. AND if my lung function goes down and I find out later this drug I was refused could help, oh, there will be hell to pay. (sorry, kids for the cuss word) but I mean it!

Haha, my favorite part on the back of the letter it said I was more than welcome to pay for the treatment out of pocket. Both of these drugs EACH cost $6,000 a MONTH! um, yeah sorry, I can't afford that. So insurance we will be duking it out over the next few months!

Anyway, even though this really makes me mad, I'm used to it and it is nothing new. But, it is an obstacle we deal with all the time! And it time I shared that info with all of you!
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