Your messages really touched me. I want to thank you for your appreciation. It shows me that you understand completely what a lot of work and a sacrifice for me (aka mom) and my family to more than "allow" but to "support" me to leave for a day and a half every 8 wks the last few years was. The placebo was a big blow emotionally and physically. I didn't realize I still had residual feelings/issues with it until your thankful messages stirred up a whole host of emotions in me. I feel such joy that we have this medication but it's been a long road. Strangely the worst part for me wasn't when I got placebo but before that when I had literally transformed in the 28 days on drug and to know I wouldn't get it again for who knew how long. I promise one of these days, I'llwrite more. And of course, I feel the guilt of beingpart of the 4%of cfers that this actually works for. I hope it's just a matter of time for 809or 661 to come out and help the majority of people with cf.
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To those on kalydeco---Lauren (your thoughts, please)
- Thread starter dramamama
- Start date
Your messages really touched me. I want to thank you for your appreciation. It shows me that you understand completely what a lot of work and a sacrifice for me (aka mom) and my family to more than "allow" but to "support" me to leave for a day and a half every 8 wks the last few years was. The placebo was a big blow emotionally and physically. I didn't realize I still had residual feelings/issues with it until your thankful messages stirred up a whole host of emotions in me. I feel such joy that we have this medication but it's been a long road. Strangely the worst part for me wasn't when I got placebo but before that when I had literally transformed in the 28 days on drug and to know I wouldn't get it again for who knew how long. I promise one of these days, I'llwrite more. And of course, I feel the guilt of beingpart of the 4%of cfers that this actually works for. I hope it's just a matter of time for 809or 661 to come out and help the majority of people with cf.
SIcklyhatED
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfsucks</b></i> how come more people aren't chiming in on the drug? are there so few people on it?</end quote>
Probably because it's so bloody expensive. I was just talking with my mother about this and asked her how in the world anyone was supossed to convince their insurance company to pay for it. Unfortunatly, in this case you couldn't really say, "Well, a lung transplant would be more expensive than giving me the meds I need!" Because uh, a transplant just might be "cheaper." :/ poo.
Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img src="i/expressions/face-icon-small-smile.gif" border="0">
Probably because it's so bloody expensive. I was just talking with my mother about this and asked her how in the world anyone was supossed to convince their insurance company to pay for it. Unfortunatly, in this case you couldn't really say, "Well, a lung transplant would be more expensive than giving me the meds I need!" Because uh, a transplant just might be "cheaper." :/ poo.
Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img src="i/expressions/face-icon-small-smile.gif" border="0">
SIcklyhatED
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfsucks</b></i> how come more people aren't chiming in on the drug? are there so few people on it?</end quote>
Probably because it's so bloody expensive. I was just talking with my mother about this and asked her how in the world anyone was supossed to convince their insurance company to pay for it. Unfortunatly, in this case you couldn't really say, "Well, a lung transplant would be more expensive than giving me the meds I need!" Because uh, a transplant just might be "cheaper." :/ poo.
Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img src="i/expressions/face-icon-small-smile.gif" border="0">
Probably because it's so bloody expensive. I was just talking with my mother about this and asked her how in the world anyone was supossed to convince their insurance company to pay for it. Unfortunatly, in this case you couldn't really say, "Well, a lung transplant would be more expensive than giving me the meds I need!" Because uh, a transplant just might be "cheaper." :/ poo.
Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img src="i/expressions/face-icon-small-smile.gif" border="0">
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SIcklyhatED</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfsucks</b></i> how come more people aren't chiming in on the drug? are there so few people on it?</end quote> Probably because it's so bloody expensive. I was just talking with my mother about this and asked her how in the world anyone was supossed to convince their insurance company to pay for it. Unfortunatly, in this case you couldn't really say, "Well, a lung transplant would be more expensive than giving me the meds I need!" Because uh, a transplant just might be "cheaper." :/ poo. Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img src=""></end quote>
More people aren't "chiming in" because there are only a handful of people that have G551D let alone people on this board that have it. You shouldnt be so surprised.
Which brings me to the second point, the people who actaully HAVE G551D should have no problems getting coverage. I'm not sure where the difficulty in this is coming in at. It's the people in here that are wanting to try it that don't have G551D that will have a difficult time and by the isurance companies policy rightly so...
More people aren't "chiming in" because there are only a handful of people that have G551D let alone people on this board that have it. You shouldnt be so surprised.
Which brings me to the second point, the people who actaully HAVE G551D should have no problems getting coverage. I'm not sure where the difficulty in this is coming in at. It's the people in here that are wanting to try it that don't have G551D that will have a difficult time and by the isurance companies policy rightly so...
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SIcklyhatED</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfsucks</b></i> how come more people aren't chiming in on the drug? are there so few people on it?</end quote> Probably because it's so bloody expensive. I was just talking with my mother about this and asked her how in the world anyone was supossed to convince their insurance company to pay for it. Unfortunatly, in this case you couldn't really say, "Well, a lung transplant would be more expensive than giving me the meds I need!" Because uh, a transplant just might be "cheaper." :/ poo. Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img src=""></end quote>
More people aren't "chiming in" because there are only a handful of people that have G551D let alone people on this board that have it. You shouldnt be so surprised.
Which brings me to the second point, the people who actaully HAVE G551D should have no problems getting coverage. I'm not sure where the difficulty in this is coming in at. It's the people in here that are wanting to try it that don't have G551D that will have a difficult time and by the isurance companies policy rightly so...
More people aren't "chiming in" because there are only a handful of people that have G551D let alone people on this board that have it. You shouldnt be so surprised.
Which brings me to the second point, the people who actaully HAVE G551D should have no problems getting coverage. I'm not sure where the difficulty in this is coming in at. It's the people in here that are wanting to try it that don't have G551D that will have a difficult time and by the isurance companies policy rightly so...
Ditto everyone Lauren - thank you so much for taking the time for participating in the trial. I so, so wish that you had not gotten placebo.
And ditto Incomudrox - I have not heard of anyone with G551D who has had a difficult time getting the drug (in the US). There just aren't that many people out there who can take it.
And ditto Incomudrox - I have not heard of anyone with G551D who has had a difficult time getting the drug (in the US). There just aren't that many people out there who can take it.
Ditto everyone Lauren - thank you so much for taking the time for participating in the trial. I so, so wish that you had not gotten placebo.
And ditto Incomudrox - I have not heard of anyone with G551D who has had a difficult time getting the drug (in the US). There just aren't that many people out there who can take it.
And ditto Incomudrox - I have not heard of anyone with G551D who has had a difficult time getting the drug (in the US). There just aren't that many people out there who can take it.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>SIcklyhatED</strong></em><em>. Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img alt="" /></end quote></em>
Easy - you prevent one or two hospitalizations a year, and the med is paid for.
Lauren said herself - she was in the hospital every 8 weeks and now it's much less. Insurance company saves LOTS of money by allowing her to take the med.
The pharmacoeconomics are pretty clear to the insurance companies.
Easy - you prevent one or two hospitalizations a year, and the med is paid for.
Lauren said herself - she was in the hospital every 8 weeks and now it's much less. Insurance company saves LOTS of money by allowing her to take the med.
The pharmacoeconomics are pretty clear to the insurance companies.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>SIcklyhatED</strong></em><em>. Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img alt="" /></end quote></em>
Easy - you prevent one or two hospitalizations a year, and the med is paid for.
Lauren said herself - she was in the hospital every 8 weeks and now it's much less. Insurance company saves LOTS of money by allowing her to take the med.
The pharmacoeconomics are pretty clear to the insurance companies.
Easy - you prevent one or two hospitalizations a year, and the med is paid for.
Lauren said herself - she was in the hospital every 8 weeks and now it's much less. Insurance company saves LOTS of money by allowing her to take the med.
The pharmacoeconomics are pretty clear to the insurance companies.
S
semperfiohana
Guest
i have tricare (military insurance) and had no problem getting it covered. covered at my standard co-pay. it took about a week from the time the pharmacy received my prescription to it getting the approval for coverage. i know i'm lucky with my insurance and i'm hoping that people don't have an issue getting it covered. i know vertex was taking your information and going through you insurance company to see if you needed any kind of finical assistance.
S
semperfiohana
Guest
i have tricare (military insurance) and had no problem getting it covered. covered at my standard co-pay. it took about a week from the time the pharmacy received my prescription to it getting the approval for coverage. i know i'm lucky with my insurance and i'm hoping that people don't have an issue getting it covered. i know vertex was taking your information and going through you insurance company to see if you needed any kind of finical assistance.
B
bethylove
Guest
I just sent in paperwork to get the ball rolling! I'm very excited to see what changes in my day to day life I experience. I'll chime back in once I get the actual drug. =)
B
bethylove
Guest
I just sent in paperwork to get the ball rolling! I'm very excited to see what changes in my day to day life I experience. I'll chime back in once I get the actual drug. =)
I want to say that after reading this thread I have renewed hope my son in on vx809. we just started a trial with 809/770. they are testing dosage for the deltas (my son is a double delta508). as of today he has been taking three 809's a day. we have a 1 in 4 chance they are all placebo. 1 in 4 one is 809, 1 in 4 two are 809 and so on. since he started taking it i have noticed him coughing MUCH more than usual. I have been thinking he is getting sick and may need to end the trial and go on IV. now im thinking he may be on the drug. a week from today he starts taking the 770 (or placebo) with the 809. He is 20 btw.
my son is saying he is actually short of breath. im thinking from the increase in coughing up old stuff maybe. he certainly has been spiting more. did anyone notice uncomfort from the increase in coughing from the trial in the beginning?
my son is saying he is actually short of breath. im thinking from the increase in coughing up old stuff maybe. he certainly has been spiting more. did anyone notice uncomfort from the increase in coughing from the trial in the beginning?
I want to say that after reading this thread I have renewed hope my son in on vx809. we just started a trial with 809/770. they are testing dosage for the deltas (my son is a double delta508). as of today he has been taking three 809's a day. we have a 1 in 4 chance they are all placebo. 1 in 4 one is 809, 1 in 4 two are 809 and so on. since he started taking it i have noticed him coughing MUCH more than usual. I have been thinking he is getting sick and may need to end the trial and go on IV. now im thinking he may be on the drug. a week from today he starts taking the 770 (or placebo) with the 809. He is 20 btw.
my son is saying he is actually short of breath. im thinking from the increase in coughing up old stuff maybe. he certainly has been spiting more. did anyone notice uncomfort from the increase in coughing from the trial in the beginning?
my son is saying he is actually short of breath. im thinking from the increase in coughing up old stuff maybe. he certainly has been spiting more. did anyone notice uncomfort from the increase in coughing from the trial in the beginning?
musclemania70
New member
For the Deltas--our CF education night is coming up at the end of March with updates to be given on the 770/809. (we already know the 661 trial has started recruiting) Does everyone have an education day/event at their center? If so, I'm sure they will be having updates for you as well.
I will post any info I get from there when I return. We all know this info isn't posted on the CFF website.
I will post any info I get from there when I return. We all know this info isn't posted on the CFF website.
musclemania70
New member
For the Deltas--our CF education night is coming up at the end of March with updates to be given on the 770/809. (we already know the 661 trial has started recruiting) Does everyone have an education day/event at their center? If so, I'm sure they will be having updates for you as well.
I will post any info I get from there when I return. We all know this info isn't posted on the CFF website.
I will post any info I get from there when I return. We all know this info isn't posted on the CFF website.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SIcklyhatED</b></i><i>. Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img alt="" /></end quote></i> Easy - you prevent one or two hospitalizations a year, and the med is paid for. Lauren said herself - she was in the hospital every 8 weeks and now it's much less. Insurance company saves LOTS of money by allowing her to take the med. The pharmacoeconomics are pretty clear to the insurance companies.</end quote>
Does it really cost $100,000 + for one hospital stay? I saw someone say that on here and I was shocked, so I started googling, and most of the info I found said it's more like $20,000 for the average hospital stay for someone with CF, but a lot of the info was outdated. I haven't been in the hospital in 23 years, so I have no idea how much it costs.
Does it really cost $100,000 + for one hospital stay? I saw someone say that on here and I was shocked, so I started googling, and most of the info I found said it's more like $20,000 for the average hospital stay for someone with CF, but a lot of the info was outdated. I haven't been in the hospital in 23 years, so I have no idea how much it costs.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SIcklyhatED</b></i><i>. Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img alt="" /></end quote></i> Easy - you prevent one or two hospitalizations a year, and the med is paid for. Lauren said herself - she was in the hospital every 8 weeks and now it's much less. Insurance company saves LOTS of money by allowing her to take the med. The pharmacoeconomics are pretty clear to the insurance companies.</end quote>
Does it really cost $100,000 + for one hospital stay? I saw someone say that on here and I was shocked, so I started googling, and most of the info I found said it's more like $20,000 for the average hospital stay for someone with CF, but a lot of the info was outdated. I haven't been in the hospital in 23 years, so I have no idea how much it costs.
Does it really cost $100,000 + for one hospital stay? I saw someone say that on here and I was shocked, so I started googling, and most of the info I found said it's more like $20,000 for the average hospital stay for someone with CF, but a lot of the info was outdated. I haven't been in the hospital in 23 years, so I have no idea how much it costs.