770 approved!!!!!!!!!

R

Redneck2009

New member
i highly doubt the ppl at the insurance companies are thinking of it that way. The insurance big shots are going to think of it as having to support the cost of the drug and our "constant" hospitalizations. and with the economy and healthcare on the road its on, they are gunna watch their pennys. HOPEFULLY for our sake i am WRONG. but only time will tell. i see my clinic at the end of the month and am going to get some info from my doctor. hopefully this will lead to a drug to work together with this one for us common ppl. BIG STEP, i cried when i read it online! sent it to my mom and gf. same results. its great news, never thought i would see a potential cure in MY lifetime!
 
R

Redneck2009

New member
i highly doubt the ppl at the insurance companies are thinking of it that way. The insurance big shots are going to think of it as having to support the cost of the drug and our "constant" hospitalizations. and with the economy and healthcare on the road its on, they are gunna watch their pennys. HOPEFULLY for our sake i am WRONG. but only time will tell. i see my clinic at the end of the month and am going to get some info from my doctor. hopefully this will lead to a drug to work together with this one for us common ppl. BIG STEP, i cried when i read it online! sent it to my mom and gf. same results. its great news, never thought i would see a potential cure in MY lifetime!
 
J

jessykt

Guest
I went to Jewish yesterday and signed some papers to be approved by the company to take the med (they want verification that you have G551D). I have Medicare only, and my nurse had met with a Medicare rep last week, and it sounds like my copay should be around $30 a month. I told her I'm worried they'll change their minds and bill me $294,000! She said it won't happen...still, I'm worried.

I should get the drug in a week or two, as only cf specialty pharmacies will have it (like the one that sends my Toby and Cayston). They asked me to participate in a study, and I said yes, so that will require 5 extra trips to the doctor (I live an hour away), but I figure someone is helping me pay for it, and I think this is a huge step to figuring out other mutations, so I owe it to everyone to do the study.

Anyway, thought I'd let you guys know how it went. I guess I'm the first person at Jewish to sign up for the drug that wasn't on the drug trial, so they are still kind of figuring out paperwork, studies and money. It's a process...
 
J

jessykt

Guest
I went to Jewish yesterday and signed some papers to be approved by the company to take the med (they want verification that you have G551D). I have Medicare only, and my nurse had met with a Medicare rep last week, and it sounds like my copay should be around $30 a month. I told her I'm worried they'll change their minds and bill me $294,000! She said it won't happen...still, I'm worried.

I should get the drug in a week or two, as only cf specialty pharmacies will have it (like the one that sends my Toby and Cayston). They asked me to participate in a study, and I said yes, so that will require 5 extra trips to the doctor (I live an hour away), but I figure someone is helping me pay for it, and I think this is a huge step to figuring out other mutations, so I owe it to everyone to do the study.

Anyway, thought I'd let you guys know how it went. I guess I'm the first person at Jewish to sign up for the drug that wasn't on the drug trial, so they are still kind of figuring out paperwork, studies and money. It's a process...
 
J

jessykt

Guest
Oh, and this is INCREDIBLE: my doctor told me only one person who had a double G551D took it. He was ready for a transplant, pfts in the 30s, took the drug and he's in the 60-70s now!!!! I guess it really does work for that particular mutation! If you are that person, give us a story and CONGRATULATIONS!
 
J

jessykt

Guest
Oh, and this is INCREDIBLE: my doctor told me only one person who had a double G551D took it. He was ready for a transplant, pfts in the 30s, took the drug and he's in the 60-70s now!!!! I guess it really does work for that particular mutation! If you are that person, give us a story and CONGRATULATIONS!
 
D

DjFunkyFife

New member
Anybody able to speculate on the possibility of GHPP (the state program here in the financially life-support-stricken state of california) approving this drug?
 
D

DjFunkyFife

New member
Anybody able to speculate on the possibility of GHPP (the state program here in the financially life-support-stricken state of california) approving this drug?
 
J

jessykt

Guest
DjFunkyFife: ask your clinic nurse or social worker; there are financial aid programs out there.
 
J

jessykt

Guest
DjFunkyFife: ask your clinic nurse or social worker; there are financial aid programs out there.
 
A

Allansarmy

Guest
This is great news indeed!
Just because of this thread, I called my wife (who had a sister pass away from CF at age 27). She was thrilled. We are now getting my son Genotyped who is 15 years old. I just need to know what kind of mutation he has. I always day dream about stuff like this, I always day dream of the nurse calling us up and say "They must have had a mix up at the sweat test lab, your son doesn't even have CF" I know... weird eh? Just a silly day dream, but it makes me smile none the less.<img title="Tongue out" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-tongue-out.gif" alt="Tongue out" border="0" />
 
A

Allansarmy

Guest
This is great news indeed!
Just because of this thread, I called my wife (who had a sister pass away from CF at age 27). She was thrilled. We are now getting my son Genotyped who is 15 years old. I just need to know what kind of mutation he has. I always day dream about stuff like this, I always day dream of the nurse calling us up and say "They must have had a mix up at the sweat test lab, your son doesn't even have CF" I know... weird eh? Just a silly day dream, but it makes me smile none the less.<img title="Tongue out" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-tongue-out.gif" alt="Tongue out" border="0" />
 
P

patrish22

Guest
Blessings to You!!!! Our family will keep you in our thoughts!
 
P

patrish22

Guest
Blessings to You!!!! Our family will keep you in our thoughts!
 
M

Mallymookcf

New member
how do you know if you have a gating mutation? i have one that is DF508 and my other is 1898+1G->A
so is it a gating mutation if it has a "G". does anyone know how to ditinguish that?
 
M

Mallymookcf

New member
how do you know if you have a gating mutation? i have one that is DF508 and my other is 1898+1G->A
so is it a gating mutation if it has a "G". does anyone know how to ditinguish that?
 
T

triples15

Super Moderator
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mallymookcf</b></i> how do you know if you have a gating mutation? i have one that is DF508 and my other is 1898+1G->A so is it a gating mutation if it has a "G". does anyone know how to ditinguish that?</end quote>

I have been trying to figure out the same thing with my second mutation, S945L (my other is DF508). I emailed my CF nurse, who asked the doctor, who then deferred the question to the research coordinator. The research coordinator emailed me back and said she does believe that S945L is one that Vertex is slated to look at in a future study but did not answer whether it is a gating mutation. I've emailed her again and am still waiting to hear. I checked the Toronto Sick Kids database but it does not say whether or not it is gating so I'm at a loss of where else to find this info. If anyone knows how to find this info please let me know. <img src="i/expressions/face-icon-small-smile.gif" border="0"> If I do have a gating mutation it would bring hope that eventually, when I can get my hands on it, Kalydeco alone could potentially help me and I wouldn't need to hang my hat quite as much on the other "correctors" in the pipeline.
 
T

triples15

Super Moderator
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mallymookcf</b></i> how do you know if you have a gating mutation? i have one that is DF508 and my other is 1898+1G->A so is it a gating mutation if it has a "G". does anyone know how to ditinguish that?</end quote>

I have been trying to figure out the same thing with my second mutation, S945L (my other is DF508). I emailed my CF nurse, who asked the doctor, who then deferred the question to the research coordinator. The research coordinator emailed me back and said she does believe that S945L is one that Vertex is slated to look at in a future study but did not answer whether it is a gating mutation. I've emailed her again and am still waiting to hear. I checked the Toronto Sick Kids database but it does not say whether or not it is gating so I'm at a loss of where else to find this info. If anyone knows how to find this info please let me know. <img src="i/expressions/face-icon-small-smile.gif" border="0"> If I do have a gating mutation it would bring hope that eventually, when I can get my hands on it, Kalydeco alone could potentially help me and I wouldn't need to hang my hat quite as much on the other "correctors" in the pipeline.
 
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