I received a letter in the mail on Thursday from my insurance company denying me from getting any more Kalydeco. I am trying not to freak out over this. After 6 months of being on Kalydeco-they are yanking it away from me. I am beyond upset at the insurance industry in our country. They don't care that this medication has increased my PFT's (lung function), brought my sweat test results down to NORMAL (from an 81 down to a 36), and showed improvements in my chest X-Ray. Apparently that's not important enough to them.
What is important to them is money. They are able to justify denying me Kalydeco because I don't have the right gene mutation that it is approved for. Who cares that it is actually working for me - that as long as I take 2 little pills per day - I basically don't have any symptoms of CF.
I am so frustrated. I plan on talking to my doctor about it on Monday - he will probably do a peer to peer call with the insurance company (from what I understand, he talks to a doctor at the insurance company). If that doesn't work - then we appeal.
There is light at the end of the tunnel though - they are starting clinical trials on my mutation right now. This means that hopefully within the next year we will have an approval for my mutation (crossing my fingers that it moves quickly). I am also going to talk to my doctor about getting into the trial (50/50 chance I could get a placebo) - but I'm not sure if that will work as I am already on the medication.
I'll post later this week to let you all know what happens......
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