We went Friday for a regular clinic appt and to discuss getting a trial prescription of Kalydeco. Abby just finished a round of Clindamycin on Wednesday which apparently helped because she had the best PFT's she's ever had!!! So very excited about that!! Her normal range FEV1 stays around 1.25 unless of course she is ill....it was 1.41!!!!! Her normal FEV 25-75 is 1.25...now 1.87!!! Even her Dr was totally surprised by how much they have increased. That being said we have been in our new house for about 4 months now with all of the upgrades that I hoped would help her stay at her best. Hopefully that has something to do with it. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I also took her new Piko 1 spirometer and tested it and it matched theirs, so that is good too. We are still probably 60 days away from finding out what her second mutation is. Our doctor reluctantly agreed to let her try Kalydeco. He took the number to the insurance company and said that he would call this week to try to get it approved. I just pray he really puts his all into it as he was not so thrilled to be doing it in the first place. My fear is that at the first sign of resistance that he will throw in the towel. I guess we will see. Hopefully they won't resist too badly. I have Humana, has anyone else dealt with them getting Kalydeco?
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Dr agreed to give off label prescription for Kalydeco
- Thread starter JENNYC
- Start date
saveferris2009
New member
Each employer has their own contract with each insurance company. So if I have Humana, my employer's contract may be liberal and may let Kaly slide through - but if your employer has a less expensive plan, there may be more road blocks. Each contract is different.
Instead of letting your doc fight the insurance company, why don't you do it? That way you know 100% of the effort that's going in to it. Tell your doc to forward on the prior auth forms to YOU!
Instead of letting your doc fight the insurance company, why don't you do it? That way you know 100% of the effort that's going in to it. Tell your doc to forward on the prior auth forms to YOU!
I have talked with my insurance company and they told me that the doctor is the only one that they will speak with. I would love to fight the fight, and if you think that what they told me is not true, I will call and call until I am blue in the face to get this approved. Thanks so much!! I will do anything!
saveferris2009
New member
.
saveferris2009
New member
.
The Dr just called and insurance told him that there is no prior authorization required!!! He is sending over the prescription right now!!! I am so so so very excited!!!!!! Thank you to everyone who has helped me to get this for her!! If it wasn't for all of the good advice and research and people paving the way I would not be here now!!! Thank you!!!!
saveferris2009
New member
See, like I've said a million times, you do'nt konw what your insurance will say UNLESS YOU TRY.
This is such amazing news. You are one of MANY who have been able to get this drug off label.
GOOD FOR YOU for just trying. I wish more parents were like you.
HUGS!
This is such amazing news. You are one of MANY who have been able to get this drug off label.
GOOD FOR YOU for just trying. I wish more parents were like you.
HUGS!