To those on kalydeco---Lauren (your thoughts, please)

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musclemania70

New member
Jessica, thank you so much for sharing your experiences!! That is nothing short of AMAZING AND MIRACULOUS!! We are so happy for you!!!!!!!! Please continue to keep us posted on your improvements and your experiences. I love hearing about these victories and improvements as I'm sure most people do. As hard as it is that we ALL can't participate, I'm still thrilled for you and look forward to hearing about your new life <img src="i/expressions/face-icon-small-smile.gif" border="0"> Amy, that would be great if you kept us updated as well and let us know how its going. We would all like to hear about your experiment.
 
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musclemania70

New member
Jessica, thank you so much for sharing your experiences!! That is nothing short of AMAZING AND MIRACULOUS!! We are so happy for you!!!!!!!! Please continue to keep us posted on your improvements and your experiences. I love hearing about these victories and improvements as I'm sure most people do. As hard as it is that we ALL can't participate, I'm still thrilled for you and look forward to hearing about your new life <img src="i/expressions/face-icon-small-smile.gif" border="0"> Amy, that would be great if you kept us updated as well and let us know how its going. We would all like to hear about your experiment.
 
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saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> JAmy, that would be great if you kept us updated as well and let us know how its going. We would all like to hear about your experiment.</end quote>

I will most likely post most details on my blog. But I'll for sure keep everyone posted! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> JAmy, that would be great if you kept us updated as well and let us know how its going. We would all like to hear about your experiment.</end quote>

I will most likely post most details on my blog. But I'll for sure keep everyone posted! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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musclemania70

New member
I found out my insurance covers Kalydeco, no further verification or letters from Doctor needed, just a script.
No additional costs except the regular copay.
I also spoke with Vertex on the phone and they said as long as your doctor gives you a prescription for it, then you are good to go.
Last hurdle to be conquered is getting the doc to say yes......
 
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musclemania70

New member
I found out my insurance covers Kalydeco, no further verification or letters from Doctor needed, just a script.
No additional costs except the regular copay.
I also spoke with Vertex on the phone and they said as long as your doctor gives you a prescription for it, then you are good to go.
Last hurdle to be conquered is getting the doc to say yes......
 
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sue35

New member
Did you call your insurance company? What exactly did you ask? I just got new insurance but don't know what to ask them about covering it.
 
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sue35

New member
Did you call your insurance company? What exactly did you ask? I just got new insurance but don't know what to ask them about covering it.
 
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saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> I found out my insurance covers Kalydeco, no further verification or letters from Doctor needed, just a script. No additional costs except the regular copay. I also spoke with Vertex on the phone and they said as long as your doctor gives you a prescription for it, then you are good to go. ...</end quote>

Ya same happened to me.
Not sure who started the rumors that you had to provide documentation of mutation or there was a very limited amount. As you saw from my earlier posts, I thought this was bogus.
Glad that you and I both found out that it's not true <img src="i/expressions/face-icon-small-smile.gif" border="0"> Best of luck with your doc! Let me know if you need negotiation tips <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> I found out my insurance covers Kalydeco, no further verification or letters from Doctor needed, just a script. No additional costs except the regular copay. I also spoke with Vertex on the phone and they said as long as your doctor gives you a prescription for it, then you are good to go. ...</end quote>

Ya same happened to me.
Not sure who started the rumors that you had to provide documentation of mutation or there was a very limited amount. As you saw from my earlier posts, I thought this was bogus.
Glad that you and I both found out that it's not true <img src="i/expressions/face-icon-small-smile.gif" border="0"> Best of luck with your doc! Let me know if you need negotiation tips <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Incomudrox

New member
I called my insurance but it's not even in their formulary yet, the rep said they'd just have to send a letter with ANY type of supporting information and they should approve it... hmm.
 
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Incomudrox

New member
I called my insurance but it's not even in their formulary yet, the rep said they'd just have to send a letter with ANY type of supporting information and they should approve it... hmm.
 
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sue35

New member
Why wouldn't a doctor prescribe it? I know it might not do anything but as long as insurance covers it it doesn't hurt them. Although I know my doctor won't say yes. I have horrible negotiating skills!
 
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sue35

New member
Why wouldn't a doctor prescribe it? I know it might not do anything but as long as insurance covers it it doesn't hurt them. Although I know my doctor won't say yes. I have horrible negotiating skills!
 
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Incomudrox

New member
The way I see it is, I live in a city that 1. Had the first hospital in the country, and 2. at one point had the most hospitals in the US. 3. It still has almost 9 hospital in the city. 4. there are about 15 CF centers within 100 miles of me. If my doctor doesn't want to go along, I'll find one that will! For me this is about my life, not his pay check. That being said I haven't brought the subject up with my doctors yet, but fully intend to on Tuesday. I live 5min from my clinic now, but I am not opposed to driving the extra 50min to John Hopkins, it's not going to kill me or break my heart to walk away.
 
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Incomudrox

New member
The way I see it is, I live in a city that 1. Had the first hospital in the country, and 2. at one point had the most hospitals in the US. 3. It still has almost 9 hospital in the city. 4. there are about 15 CF centers within 100 miles of me. If my doctor doesn't want to go along, I'll find one that will! For me this is about my life, not his pay check. That being said I haven't brought the subject up with my doctors yet, but fully intend to on Tuesday. I live 5min from my clinic now, but I am not opposed to driving the extra 50min to John Hopkins, it's not going to kill me or break my heart to walk away.
 
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