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NatalieB, thanks for the well wishes for my daughter! Yes, we only got approved on a temp basis for 3 months. I believe the phamacist who helped me must have offered this as a solution to the review team. He personally called me the day I got approval and told me that I would be getting a...
Hi NatalieB,
I'm so sorry to hear about your denial. My 14 yo daughter with CF is on Kalydeco off label as well. She is F508del and 621 +1G>T (splicing mutation). She was on Kalydeco for one month in April before prior authorization was required through BCBS. Her FEV1 went up 11% in one...
Thanks, JennyC, your post truly touched my heart and it really helps to know others care. I did contact our congressmen and got a nice personal phone call from one assistant. She basically said without FDA approval, there was not much they could do to force the issue for coverage. I am...
Very interesting thread. Thanks to all who have contributed. My daughter is the person referred to above that increased 11% on Kalydeco as monotherapy off label.
@pjammer65-Keep asking for the prescription and change doctors if you don't get it!
My daughter is 14 yrs old with F508del and...
Hi! I ordered PharmaNAC for my 14 yo daughter w/ CF and received it today. She had one tablet in water around noon and didn't mind the taste at all. Does anyone know the recommended dose for CF patients in order to see the best results? Thanks!
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