First person I know getting Kalydeco

Avatar for adamsmomplus2
Community Leader
Registered: 09-09-2000
First person I know getting Kalydeco
5
Thu, 02-09-2012 - 4:48pm
My friend's insurance approved Kalydeco for her dd. she has a $50 co-pay, $35 of which Vertex will reimburse as part of their patient assistance program. I'm so happy for her. Her dd has been very sick lately with PFTs in the low 40s so I'm excited to hear about big improvements.
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Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
Fri, 02-10-2012 - 3:59pm
That's awesome! Keep us posted on she does on it.

iVillage Member
Registered: 10-12-2010
Wed, 02-15-2012 - 3:46pm

Oh, please let us know how her daughter does! This drug is so exciting, even though it's not right for Paige.

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Avatar for adamsmomplus2
Community Leader
Registered: 09-09-2000
Thu, 02-16-2012 - 3:25am

I haven't heard anything, yet. I'll keep y'all posted.

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iVillage Member
Registered: 07-17-2005
Thu, 02-16-2012 - 1:20pm
That's AWESOME!! How old is her dd? I thought Kalydeco was for "mild" CF mutations. Hopefully, it will make a big difference!
Avatar for adamsmomplus2
Community Leader
Registered: 09-09-2000
Thu, 02-16-2012 - 4:53pm

Her dd is 12. She is monozygotic G551D. She wasn't diagnosed until she was 3 1/2, though. She's always been one to go in for yearly (sometimes more) inpatient tune-ups and she does overnight tube-feedings because she has trouble keeping her weight up.

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