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hurry-up-vertex
01-16-2013, 03:00 PM
Has anyone gone to the state level appeal to try to get Kalydeco? I am at the state level in appeal in New York and am fighting their denial. A third party, "neutral" organization denied me while I have two siblings who were approved. One went through the same appeal process and submitted the exact same documents. I would like to speak with anyone else who has appealed all the way to the state level and been denied. I am not G551D.

triples15
01-16-2013, 10:07 PM
Hi and welcome hurry up vertex!! I feel the exact same way!

There is a member on here who took her case to the state appeals level and won. Her name is Martha and her user name is lifeisgood729. She has a residual function mutation, not G551D. I know you said you were looking for others who were denied, but I thought I would mention this in case it helped in any way.

You've prob already read it, but here is a link to a very interesting thread about Kalydeco and class IV mutations that contains lots of good info.

http://forum.cysticfibrosis.com/threads/25362-Kalydeco-and-Class-IV-Mutations/page7

If you have a class IV or residual function mutation there may be more info in there that you could use to submit for your appeal. I have a residual function mutation, and plan to approach my doc with some of the info I learned in that thread to try to persuad him to prescribe Kalydeco. The info looks VERY promising for my mutation, S945L. I am also possibly getting into the Vertex study in Denver for people with residual function mutations. I really want to get my hands on the stuff one way or another!

It's so hard know this stuff is out there and will very likely help for us but we can't try it! I'm glad your siblings were able to get approved but wow, how inconsistent that you submitted the same evidence and were denied. The bureacracy and red tape is so maddening.

Good luck to you and I hope someone can help!

Take Care,
Autumn 32 w/cf

PS. I linked that to page 7 of that thread where Martha talked about taking it to the state appeals level. If you want to read all the info you can go back to page 1 and start at the beginning.

triples15
01-18-2013, 08:56 PM
It's me again!

I just noticed this is posted in the Global Healthcare category. I would suggest you repost this in the CFTR Modulation section and/or the Adults section. Those sections get a lot more traffic and you'd have a better chance of getting more replies.

Autumn