Getting a script for Kalydeco if you are not G551D

dramamama

New member
OK to further add on to what anchorman said:

I just called Vertex to speak with them about doctor's prescribing Kalydeco off-label.
Here is what I learned~
Any doctor, any where can write a script RIGHT NOW for Kalydeco for any patient with CF regardless of mutation. They (vertex) do not require proof of mutation...that is only important if you have G551D and vertex can help get financial assistance for the drug. The form docs sign is to help G551d get insurance coverage, that is all!!!!
<strong>Vertex is bound by legal obligation to only help (financially) patients who are G551D. There is actually very little they can say to a CF patient who is not G551D because of FDA REGULATIONS because the approval of the drug only covered G551D. They cannot tell you if it might be beneficial (even if it works great in vitro on your mutation) because it is against the LAW and they will get in troulble.</strong>
<strong>However, I was informed that if your doc thinks it is an important drug to try and might be helpful, they are absoltuely allowed to prescribe it off-label. At that point, your pharmacy will do what it can to get the drug covered by insurance.</strong>
If your clinic has a problem with that, have them call this number at vertex:
<span>877-752-5933 Option 2
<span>PLEASE PASS THIS INFO ON TO YOUR DOCTORS!
 

dramamama

New member
OK to further add on to what anchorman said:

I just called Vertex to speak with them about doctor's prescribing Kalydeco off-label.
Here is what I learned~
Any doctor, any where can write a script RIGHT NOW for Kalydeco for any patient with CF regardless of mutation. They (vertex) do not require proof of mutation...that is only important if you have G551D and vertex can help get financial assistance for the drug. The form docs sign is to help G551d get insurance coverage, that is all!!!!
<strong>Vertex is bound by legal obligation to only help (financially) patients who are G551D. There is actually very little they can say to a CF patient who is not G551D because of FDA REGULATIONS because the approval of the drug only covered G551D. They cannot tell you if it might be beneficial (even if it works great in vitro on your mutation) because it is against the LAW and they will get in troulble.</strong>
<strong>However, I was informed that if your doc thinks it is an important drug to try and might be helpful, they are absoltuely allowed to prescribe it off-label. At that point, your pharmacy will do what it can to get the drug covered by insurance.</strong>
If your clinic has a problem with that, have them call this number at vertex:
<span>877-752-5933 Option 2
<span>PLEASE PASS THIS INFO ON TO YOUR DOCTORS!
 

rmotion

New member
Maybe we should put a petition together to use to show our doc's, vertex and insurance companies.
We could base it on the following:
1. Vertex research showed a 5-8% activity with the F508 patients ( this is not enough to get a new drug approved) but could help us somehow.
2. We can base it on a trial basis for 3 months etc to see if there is any benefit, maybe even higher PFT's. They use the pft as the benchmark of efficacy, well maybe we just need some edge to stay out of hospital. Could be a good argument.
3. ANy improvement could stave off decline for future therapy, etc.
 

rmotion

New member
Maybe we should put a petition together to use to show our doc's, vertex and insurance companies.
We could base it on the following:
1. Vertex research showed a 5-8% activity with the F508 patients ( this is not enough to get a new drug approved) but could help us somehow.
2. We can base it on a trial basis for 3 months etc to see if there is any benefit, maybe even higher PFT's. They use the pft as the benchmark of efficacy, well maybe we just need some edge to stay out of hospital. Could be a good argument.
3. ANy improvement could stave off decline for future therapy, etc.
 

saveferris2009

New member
Or you could just ask your doc for an Rx and try to run it through your insurance and see what happens.

I feel like many people just assume their docs will say no or insurance will say no, without even trying.

Why not just give it a try and go from there?
 

saveferris2009

New member
Or you could just ask your doc for an Rx and try to run it through your insurance and see what happens.

I feel like many people just assume their docs will say no or insurance will say no, without even trying.

Why not just give it a try and go from there?
 

JENNYC

New member
If you don't mind my asking, I was just wondering how your experience is going saveferris2009. I try to keep check of your blog and haven't seen anything since day 2. Thanks and hope it is going well!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JENNYC

New member
If you don't mind my asking, I was just wondering how your experience is going saveferris2009. I try to keep check of your blog and haven't seen anything since day 2. Thanks and hope it is going well!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JoyousMom

New member
Great job of researching! Thanks! Question: is it true that each pill costs $1000. apiece? Any word on actual cost?
Next question: has anyone done any journalistic investigation of these pharmaceutical companies to see WHY our medications cost outrageous amounts?! This kind of investigation would make a great documentary...and if the public knew the truth, maybe it would help us find ways to lower the costs and bring regulation to the system (as you can see, I am already insinuating that drug companies are ripping us off...just a hunch).
 

JoyousMom

New member
Great job of researching! Thanks! Question: is it true that each pill costs $1000. apiece? Any word on actual cost?
Next question: has anyone done any journalistic investigation of these pharmaceutical companies to see WHY our medications cost outrageous amounts?! This kind of investigation would make a great documentary...and if the public knew the truth, maybe it would help us find ways to lower the costs and bring regulation to the system (as you can see, I am already insinuating that drug companies are ripping us off...just a hunch).
 
P

petersymons

Guest
Im in australia and my son is D508 i just got a quote to buy 200 g of Ivacaftor (Kalydeco) for $13000 from a chemical company in china. 60 x 150 mg Kalydeco tablets costs $24500 from pharmacies in the USA. The 200 g would last over a year. The 60 tablets are one months supply. A years supply would cost $294000. I want to combine the Kalydeco with VX 809 (lumacaftor) this can also be purchased but seems to be more expensive 50g for $19500. Obviously the larger the amount the cheaper the cost. So there is obviously a big mark up.
 

ccsalema

New member
Can anybody who is using Kalydeco off-label (nonG551D) please tell me what pharmacy you used to fill your 'scrip? Is Foundation Care the only dispensing place? Please help?
 
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