If you don't have a gating mutation and want Kalydeco....

[Incomudrox]

If you don't have a gating mutation and want Kalydeco you better push your doctors NOW before 2nd quarter of 2012. I just spoke with a pharmasist at one of the pharmacies that fills Kalydeco, they are FULLY expecting after Q2 meetings a large amount of insurance companies will require proof of G551D and or other gating mutations (Class 3).

Point being push as hard as possible to get it now that was if you will see an improvement from it you know now and have ammo to fight requirements that may need to be satisfied later down the road. Document EVERYTHING with your clinic.

They also told me that not many insurance companies (including medicaid plans) are not currently denying it. They said the only medicaid plan off the top of her head with issues was in Kansas.

For for thought people.

 

[Incomudrox]

If you don't have a gating mutation and want Kalydeco you better push your doctors NOW before 2nd quarter of 2012. I just spoke with a pharmasist at one of the pharmacies that fills Kalydeco, they are FULLY expecting after Q2 meetings a large amount of insurance companies will require proof of G551D and or other gating mutations (Class 3).

Point being push as hard as possible to get it now that was if you will see an improvement from it you know now and have ammo to fight requirements that may need to be satisfied later down the road. Document EVERYTHING with your clinic.

They also told me that not many insurance companies (including medicaid plans) are not currently denying it. They said the only medicaid plan off the top of her head with issues was in Kansas.

For for thought people.

 

[tumbleon]

I have read a lot of talk about trying to get Kalydeco if you do not have the G551D mutation. I have not seen or heard a lot if any responses or results of people who actually have tried it? Can those people who do not have G551D and have gone on Kalydeco tell us if they have seen any improvement or decline or what has been their experience results? Thank You

 

[tumbleon]

I have read a lot of talk about trying to get Kalydeco if you do not have the G551D mutation. I have not seen or heard a lot if any responses or results of people who actually have tried it? Can those people who do not have G551D and have gone on Kalydeco tell us if they have seen any improvement or decline or what has been their experience results? Thank You

 

[dramamama]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Incomudrox</b></i> If you don't have a gating mutation and want Kalydeco you better push your doctors NOW before 2nd quarter of 2012. I just spoke with a pharmasist at one of the pharmacies that fills Kalydeco, they are FULLY expecting after Q2 meetings a large amount of insurance companies will require proof of G551D and or other gating mutations (Class 3). Point being push as hard as possible to get it now that was if you will see an improvement from it you know now and have ammo to fight requirements that may need to be satisfied later down the road. Document EVERYTHING with your clinic. They also told me that not many insurance companies (including medicaid plans) are not currently denying it. They said the only medicaid plan off the top of her head with issues was in Kansas. For for thought people.</end quote>

HUGE INFO!! You should repost this in other groups you are a part of... wink, wink.
I'll post ot on the praying for success on facebook.

 

[dramamama]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Incomudrox</b></i> If you don't have a gating mutation and want Kalydeco you better push your doctors NOW before 2nd quarter of 2012. I just spoke with a pharmasist at one of the pharmacies that fills Kalydeco, they are FULLY expecting after Q2 meetings a large amount of insurance companies will require proof of G551D and or other gating mutations (Class 3). Point being push as hard as possible to get it now that was if you will see an improvement from it you know now and have ammo to fight requirements that may need to be satisfied later down the road. Document EVERYTHING with your clinic. They also told me that not many insurance companies (including medicaid plans) are not currently denying it. They said the only medicaid plan off the top of her head with issues was in Kansas. For for thought people.</end quote>

HUGE INFO!! You should repost this in other groups you are a part of... wink, wink.
I'll post ot on the praying for success on facebook.

 

[Keepercjr]

Thank you! I just got it wednesday and am waiting to see if I see any improvement. I just came down w/ a cold last night so obviously I can't tell anything yet. I asked my doctor to prescribe me a home FEV1 meter (I tried to order it on drugstore.com but it was backordered and then they cancelled it) so that I can track any changes to have ammo in case I start getting denied.

tumbleon - I think many who are on it are waiting to post any results until they have been on it for at least a few weeks. I know I am. Plus I have no way to say whether it is raising my PFTs or not since I live 3.5 hours from my clinic and don't have a home FEV1 monitor yet.

 

[Keepercjr]

Thank you! I just got it wednesday and am waiting to see if I see any improvement. I just came down w/ a cold last night so obviously I can't tell anything yet. I asked my doctor to prescribe me a home FEV1 meter (I tried to order it on drugstore.com but it was backordered and then they cancelled it) so that I can track any changes to have ammo in case I start getting denied.

tumbleon - I think many who are on it are waiting to post any results until they have been on it for at least a few weeks. I know I am. Plus I have no way to say whether it is raising my PFTs or not since I live 3.5 hours from my clinic and don't have a home FEV1 monitor yet.

 

[jmiller]

Another FYI-- my doctor spoke w the cf foundation after I asked to try it. They are going to formally take a stance of strongly discouraging off-label prescriptions for it. So this reinforces the time sensitive nature of trying it. If I get my hands on it we are going to do a pre and post sweat chloride test with the assumption that pre and post pft's arent necessarily enough to demonstrate concretely that it is or isn't working.

 

[jmiller]

Another FYI-- my doctor spoke w the cf foundation after I asked to try it. They are going to formally take a stance of strongly discouraging off-label prescriptions for it. So this reinforces the time sensitive nature of trying it. If I get my hands on it we are going to do a pre and post sweat chloride test with the assumption that pre and post pft's arent necessarily enough to demonstrate concretely that it is or isn't working.

 

[saveferris2009]

FYI the Kaly Phase III study showed that change in sweat chloride didn't necessarily correlate with magnitude of FEV1 difference. So a sweat test is a nice to know, but it's not your sweat chloride # that predicts your health with CF - it's your FEV1.

Sad that the CF Foundation might take a stance - it's amazing what's out there for how widely this drug can work for people. We'll see what they say! Won't change what I'm doing, though.

But then again, I'm a bit more of an independent type - using the eFlow back in 2006 way before Cayston was approved; using NAC; using the InCourage Vest instead of the heavily promoted HillRom vest, pushing to do a blood sugar diary even though my OGTT came back normal and of course then being diagnosed with CFRD, using Magnesium to help MDRPA, etc. (influenced heavily by dramamama of course!)

So that's just me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

FYI the Kaly Phase III study showed that change in sweat chloride didn't necessarily correlate with magnitude of FEV1 difference. So a sweat test is a nice to know, but it's not your sweat chloride # that predicts your health with CF - it's your FEV1.

Sad that the CF Foundation might take a stance - it's amazing what's out there for how widely this drug can work for people. We'll see what they say! Won't change what I'm doing, though.

But then again, I'm a bit more of an independent type - using the eFlow back in 2006 way before Cayston was approved; using NAC; using the InCourage Vest instead of the heavily promoted HillRom vest, pushing to do a blood sugar diary even though my OGTT came back normal and of course then being diagnosed with CFRD, using Magnesium to help MDRPA, etc. (influenced heavily by dramamama of course!)

So that's just me <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jmiller]

Amen sister!!

 

[jmiller]

Amen sister!!

 

[dramamama]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jmiller</b></i> Another FYI-- my doctor spoke w the cf foundation after I asked to try it. They are going to formally take a stance of strongly discouraging off-label prescriptions for it. So this reinforces the time sensitive nature of trying it. If I get my hands on it we are going to do a pre and post sweat chloride test with the assumption that pre and post pft's arent necessarily enough to demonstrate concretely that it is or isn't working.</end quote>

This devastates me... I cannot believe they would take this stance. so sad

 

[dramamama]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jmiller</b></i> Another FYI-- my doctor spoke w the cf foundation after I asked to try it. They are going to formally take a stance of strongly discouraging off-label prescriptions for it. So this reinforces the time sensitive nature of trying it. If I get my hands on it we are going to do a pre and post sweat chloride test with the assumption that pre and post pft's arent necessarily enough to demonstrate concretely that it is or isn't working.</end quote>

This devastates me... I cannot believe they would take this stance. so sad

 

[Anomie]

How will they know which mutations it is effective against if they don't want to let people try it?

 

[Anomie]

How will they know which mutations it is effective against if they don't want to let people try it?

 

[Incomudrox]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anomie</b></i> How will they know which mutations it is effective against if they don't want to let people try it?</end quote>

Through more long and gruling clinic trails that are expensive and drive the need for more fund raising so the CFF can keep exsisting! Also cell line in vitro testing will be a large part. CFF is a crooked as the rest of them. We live in a capitolist system you will never see a "once and done cure" they don't want it.

 

[Incomudrox]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anomie</b></i> How will they know which mutations it is effective against if they don't want to let people try it?</end quote>

Through more long and gruling clinic trails that are expensive and drive the need for more fund raising so the CFF can keep exsisting! Also cell line in vitro testing will be a large part. CFF is a crooked as the rest of them. We live in a capitolist system you will never see a "once and done cure" they don't want it.