Off Label Kalydeco-My follow up Appt.

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JoyousMom

New member
Ok, is this drug available to those who just happen to have doctors who are willing and insurance that is willing? Is anyone with DF508 taking this? I've been told by our CF doctor that it is NOT available for my daughter right now. Two years of waiting. But like most of you I would move heaven and earth (or at least take out a big loan!) to find a drug that would not only extend life but take away her symptoms.....
I live in Texas, near Austin---any suggestions? Also, she is on Medicaid/Medically Dependent Children's Program.
 
J

JoyousMom

New member
Ok, is this drug available to those who just happen to have doctors who are willing and insurance that is willing? Is anyone with DF508 taking this? I've been told by our CF doctor that it is NOT available for my daughter right now. Two years of waiting. But like most of you I would move heaven and earth (or at least take out a big loan!) to find a drug that would not only extend life but take away her symptoms.....
I live in Texas, near Austin---any suggestions? Also, she is on Medicaid/Medically Dependent Children's Program.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JoyousMom</b></i> Ok, is this drug available to those who just happen to have doctors who are willing and insurance that is willing? Is anyone with DF508 taking this? </end quote>

I just told you three posts ago that I have DF508 and I'm on it.
 
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saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JoyousMom</b></i> Ok, is this drug available to those who just happen to have doctors who are willing and insurance that is willing? Is anyone with DF508 taking this? </end quote>

I just told you three posts ago that I have DF508 and I'm on it.
 
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marcijo

Guest
As far as I know-you need a doctor willing to write you a prescription and an insurance company that will pay for it. I started by calling my insurance company...they said it would be covered. Then I asked my doctor. Good luck!
 
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marcijo

Guest
As far as I know-you need a doctor willing to write you a prescription and an insurance company that will pay for it. I started by calling my insurance company...they said it would be covered. Then I asked my doctor. Good luck!
 
J

JoyousMom

New member
Is there anyone taking Kalydeco who has Df508 double gene?
If so, please tell me how you obtained it.
Thanks you!
 
J

JoyousMom

New member
Is there anyone taking Kalydeco who has Df508 double gene?
If so, please tell me how you obtained it.
Thanks you!
 
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