It has been a crazy few weeks and I just realized I hadn't updated my blog in awhile! At the end of May, my CF clinic emailed me just to let me know that the specialty pharmacy that I order my Kalydeco through called to verify my CF mutations.
I assumed this to be VERY bad news - as I am on Kalydeco off label and I don't have the specific mutation that it is approved for by the FDA. However-it is thought to work on my mutation (and we know now that it obviously does) :) I called the pharmacy that day in the hopes of getting it filled and shipped before they cut me off, but they told me it was too early to refill and set up the refill date for the next week.
I was so upset at the thought of not having this med.....I basically had to wait for the denial and then we could start fighting. To my surprise-they shipped out my med the next week! I was amazed and so thankful to have this medication for another month without a fight.
They just called me again today to schedule this month's delivery....I set it up for the soonest date that I could-which is next week. I am expecting them to deny it...but I am really really really REALLY hoping that they don't. I am hoping that it is a good sign that they called to schedule delivery???
I kind of have a plan in place if they do deny me....first my CF doctor will do a peer to peer call with the insurance company - which is where he talks with a doctor at the insurance company and explains what is going on, how good I am doing on the med, etc. If that doesn't work-we will officially appeal using my sweat test results as a marker. I have a friend who knows the insurance commissioner of WA state so that will be helpful too. A few of the state reps in my area we happen to know, which I think will help too. If all else fails there is a study on one of my mutations (R117H) that starts this summer.....
I will update you guys as soon as I know anything! I am feeling great-rarely coughing.....this is truly a miracle medicine!
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