DF508 and Kalydeco

1

1redmom

New member
Hello,

My daughter, 21 G551D & Df508 just received her first bottle of it! The length of time it took for her to get it was due to the requirements of her providers & not Vertex or the pharmacy (CfServices) itself. She is covered by GHPP here in California & SSI disability. They would not cover this med until her gene mutation was verified. Makes sense considering the cost, they have to follow the regulations passed by the FDA for who can receive it. She is on day 3 today & every excited!
 
1

1redmom

New member
Hello,

My daughter, 21 G551D & Df508 just received her first bottle of it! The length of time it took for her to get it was due to the requirements of her providers & not Vertex or the pharmacy (CfServices) itself. She is covered by GHPP here in California & SSI disability. They would not cover this med until her gene mutation was verified. Makes sense considering the cost, they have to follow the regulations passed by the FDA for who can receive it. She is on day 3 today & every excited!
 
J

jessykt

Guest
Saveferris:

There needed to be verification that I had the right mutation. Then a case manager from Vertex called and helped get things moving through insurance and then connected me with the CFAssistance program.

I've been on the drug for a week and don't feel any different other than my cough is very different...

I'm in two GOAL studies, one at National Jewish and one at Children's Hospital in Denver. They are just looking at how things change while on the drug. I was told by the research coordinator at Children's that Kalydeco HAS been studied on other mutations, but the success rate was so low that it wouldn't ever pass through FDA in regards to other mutations. They chose G551D because it had the highest rate of success, and essentially will work backwards to get insurance to cover other mutations, but it won't be as theraputic for those mutations. I guess others could use Kalydeco, but it is a very hefty price tag with little effect for mutations other than G551D.
 
J

jessykt

Guest
Saveferris:

There needed to be verification that I had the right mutation. Then a case manager from Vertex called and helped get things moving through insurance and then connected me with the CFAssistance program.

I've been on the drug for a week and don't feel any different other than my cough is very different...

I'm in two GOAL studies, one at National Jewish and one at Children's Hospital in Denver. They are just looking at how things change while on the drug. I was told by the research coordinator at Children's that Kalydeco HAS been studied on other mutations, but the success rate was so low that it wouldn't ever pass through FDA in regards to other mutations. They chose G551D because it had the highest rate of success, and essentially will work backwards to get insurance to cover other mutations, but it won't be as theraputic for those mutations. I guess others could use Kalydeco, but it is a very hefty price tag with little effect for mutations other than G551D.
 
K

Keepercjr

Guest
Jessykt - it sound vertex wanted proof in order to give you financial assistance, not to fill the drug. I'm guessing your copay with your insurance would have been really high w/o the assistance.

My insurance approved it no problem. I do not have G551D. My copay is $33.33 per month.
 
K

Keepercjr

Guest
Jessykt - it sound vertex wanted proof in order to give you financial assistance, not to fill the drug. I'm guessing your copay with your insurance would have been really high w/o the assistance.

My insurance approved it no problem. I do not have G551D. My copay is $33.33 per month.
 
A

anchorman

New member
Again this is an insurance issue. Yes it was approved for g551because it did the best. Most insurance companies won't pay 25k let alone 300k for something that may or may not work and to unknown degree.
 
A

anchorman

New member
Again this is an insurance issue. Yes it was approved for g551because it did the best. Most insurance companies won't pay 25k let alone 300k for something that may or may not work and to unknown degree.
 
D

dramamama

New member
Kalydeco had even greater success in some other gating mutations. One or two of them even functioned normally when kalydeco was added....that is BETTER than with G551D. G551D is the most common of the gating mutations which allows more people to get it right off the bat. Until there is some kind of trial that can approve many mutations at one time (which will happen no doubt) they are choosing to test mutations that affect the greatest number of people....
It is not the other way around. For example S1251N was restored very close to normal function with 770...but it is incredibly rare! They would never have a trial on that mutation which affects .000? percent of the population vs G551D which affects 3% although the CFTR restoration was a bit less. Vertex is a business even before it is interested in helping people....
Much of the info on how mutations responded in Class III are available online <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
D

dramamama

New member
Kalydeco had even greater success in some other gating mutations. One or two of them even functioned normally when kalydeco was added....that is BETTER than with G551D. G551D is the most common of the gating mutations which allows more people to get it right off the bat. Until there is some kind of trial that can approve many mutations at one time (which will happen no doubt) they are choosing to test mutations that affect the greatest number of people....
It is not the other way around. For example S1251N was restored very close to normal function with 770...but it is incredibly rare! They would never have a trial on that mutation which affects .000? percent of the population vs G551D which affects 3% although the CFTR restoration was a bit less. Vertex is a business even before it is interested in helping people....
Much of the info on how mutations responded in Class III are available online <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jessykt</b></i> Saveferris: There needed to be verification that I had the right mutation. Then a case manager from Vertex called and helped get things moving through insurance and then connected me with the CFAssistance program. </end quote>
Exactly as I stated. They needed your mutation to help with assistance - NOT to fill the drug. No mutation documentation is needed to just fill the Rx.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jessykt</b></i> Saveferris: There needed to be verification that I had the right mutation. Then a case manager from Vertex called and helped get things moving through insurance and then connected me with the CFAssistance program. </end quote>
Exactly as I stated. They needed your mutation to help with assistance - NOT to fill the drug. No mutation documentation is needed to just fill the Rx.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anchorman</b></i> Most insurance companies won't pay 25k let alone 300k for something that may or may not work and to unknown degree.</end quote>
We have found that this isn't true on this forum. Looks like many have paid for it at a reasonable co-pay even though people don't have G551D. <img src="i/expressions/face-icon-small-smile.gif" border="0">
You never know unless you true! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Many have made assumptions ..... but they have been incorrect.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anchorman</b></i> Most insurance companies won't pay 25k let alone 300k for something that may or may not work and to unknown degree.</end quote>
We have found that this isn't true on this forum. Looks like many have paid for it at a reasonable co-pay even though people don't have G551D. <img src="i/expressions/face-icon-small-smile.gif" border="0">
You never know unless you true! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Many have made assumptions ..... but they have been incorrect.
 
A

anchorman

New member
Save agreed that's why I said most I think so many are saying that vertex is requesting info when it is insurance. Most insurances want a prior auth. Or won't pay for off label. Not all ins as you and others have proved. By the way you and drama mama are owed a great deal of thanx....
 
A

anchorman

New member
Save agreed that's why I said most I think so many are saying that vertex is requesting info when it is insurance. Most insurances want a prior auth. Or won't pay for off label. Not all ins as you and others have proved. By the way you and drama mama are owed a great deal of thanx....
 
C

cfsucks

Guest
are threre any canadians on here who have gotten it? ive called vertex and they said they can get it to canada but the cost i imagine would be far too much- insurance companies here i doubt would cover the cost. i also called the canadian version of the fda to see if its being fast tracked but no one responded to me either- such a struggle! (i dont have g551d)
 
C

cfsucks

Guest
are threre any canadians on here who have gotten it? ive called vertex and they said they can get it to canada but the cost i imagine would be far too much- insurance companies here i doubt would cover the cost. i also called the canadian version of the fda to see if its being fast tracked but no one responded to me either- such a struggle! (i dont have g551d)
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anchorman</b></i> Not all ins as you and others have proved. By the way you and drama mama are owed a great deal of thanx....</end quote>
I'm just following Mandy's footsteps. All thankgs belong to her 100%! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anchorman</b></i> Not all ins as you and others have proved. By the way you and drama mama are owed a great deal of thanx....</end quote>
I'm just following Mandy's footsteps. All thankgs belong to her 100%! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
You must log in or register to reply here.
Top