First let me say thanks to the many on this board...There was lots of info flying around about getting a prescription for VX770 Kalydeco. I called Vertex Pharma and asked would they fill a prescription if I did not have the G155 mutation. The answer YES!. As long as my DR. will prescribe it and insurance or I am willing to pay for it ie. cash, they will fill that script through one of thier pharmacies that has it. Now when they put in the order there is a form that asks do you have g155...Feel free to check no if you don't have it. It is then up to your insurance company to go ahead and pay for it or not. Again this is coming from Vertex. The way I asked my question is by offering to pay cash.So taking all the insurance and financial asssitance out of the picture the company will sell it as long as you have a prescription....
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Clarification
- Thread starter anchorman
- Start date
First let me say thanks to the many on this board...There was lots of info flying around about getting a prescription for VX770 Kalydeco. I called Vertex Pharma and asked would they fill a prescription if I did not have the G155 mutation. The answer YES!. As long as my DR. will prescribe it and insurance or I am willing to pay for it ie. cash, they will fill that script through one of thier pharmacies that has it. Now when they put in the order there is a form that asks do you have g155...Feel free to check no if you don't have it. It is then up to your insurance company to go ahead and pay for it or not. Again this is coming from Vertex. The way I asked my question is by offering to pay cash.So taking all the insurance and financial asssitance out of the picture the company will sell it as long as you have a prescription....
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 doc s sign is to help G551d get insurance coverage, that is all!!!!
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 trouble.
However, I was informed that if your doc thinks it is an important drug to try and might be helpful, they are absolutely allowed to prescribe it off-label. At that point, your pharmacy will do what it can to get the drug covered by insurance.
If your clinic has a problem with that, have them call this number at vertex:
<span style="font-size: large;">877-752-5933 Option 2
<span style="font-size: large;">PLEASE PASS THIS INFO ON TO YOUR DOCTORS!
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 doc s sign is to help G551d get insurance coverage, that is all!!!!
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 trouble.
However, I was informed that if your doc thinks it is an important drug to try and might be helpful, they are absolutely allowed to prescribe it off-label. At that point, your pharmacy will do what it can to get the drug covered by insurance.
If your clinic has a problem with that, have them call this number at vertex:
<span style="font-size: large;">877-752-5933 Option 2
<span style="font-size: large;">PLEASE PASS THIS INFO ON TO YOUR DOCTORS!
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 doc s sign is to help G551d get insurance coverage, that is all!!!!
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 trouble.
However, I was informed that if your doc thinks it is an important drug to try and might be helpful, they are absolutely allowed to prescribe it off-label. At that point, your pharmacy will do what it can to get the drug covered by insurance.
If your clinic has a problem with that, have them call this number at vertex:
<span style="font-size: large;">877-752-5933 Option 2
<span style="font-size: large;">PLEASE PASS THIS INFO ON TO YOUR DOCTORS!
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 doc s sign is to help G551d get insurance coverage, that is all!!!!
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 trouble.
However, I was informed that if your doc thinks it is an important drug to try and might be helpful, they are absolutely allowed to prescribe it off-label. At that point, your pharmacy will do what it can to get the drug covered by insurance.
If your clinic has a problem with that, have them call this number at vertex:
<span style="font-size: large;">877-752-5933 Option 2
<span style="font-size: large;">PLEASE PASS THIS INFO ON TO YOUR DOCTORS!
CrisDopher
New member
Most important --- for those of you who do not have G551D, please report back as to whether Kalydeco is making a difference!
CrisDopher
New member
Most important --- for those of you who do not have G551D, please report back as to whether Kalydeco is making a difference!
musclemania70
New member
And if you report back with any findings please also report your mutation(s).
musclemania70
New member
And if you report back with any findings please also report your mutation(s).
P
petersymons
Guest
HI Dramamama, I would love to please hear about your experiences with microcyn.
regards Peter
regards Peter
P
petersymons
Guest
HI Dramamama, I would love to please hear about your experiences with microcyn.
regards Peter
regards Peter