Vertex application to FDA

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Treble

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> even if it was called rinky dinky poo.</end quote></div>

<div><br></div><div>You won't catch me puttin any rinky dinky poo in my mouth any time soon. XD</div><div><br></div><div>I think that VX77 would be a sick name for it to have tho honestly. Especially for what this drug actually does. </div><div><br></div><div>A hardcore drug deserves a hardcore name, imo. :></div>
 
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Treble

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> even if it was called rinky dinky poo.</end quote>

<br>You won't catch me puttin any rinky dinky poo in my mouth any time soon. XD<br>I think that VX77 would be a sick name for it to have tho honestly. Especially for what this drug actually does.<br>A hardcore drug deserves a hardcore name, imo. :>
 
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Treble

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> even if it was called rinky dinky poo.</end quote>

<br>You won't catch me puttin any rinky dinky poo in my mouth any time soon. XD<br>I think that VX77 would be a sick name for it to have tho honestly. Especially for what this drug actually does.<br>A hardcore drug deserves a hardcore name, imo. :>
 
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LouLou

New member
hmm. interesting I thought they'd already submitted and that we were just awaiting approval. I've been in this study since 2008 and am on open label (which means I have drug). I look forward to this drug being approved so that my 4 year old can start it (off label use). I also want it approved so that total focus can be put on DF508 for the many with it. I too have DF508 and hope to get on that drug too!
 
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LouLou

New member
hmm. interesting I thought they'd already submitted and that we were just awaiting approval. I've been in this study since 2008 and am on open label (which means I have drug). I look forward to this drug being approved so that my 4 year old can start it (off label use). I also want it approved so that total focus can be put on DF508 for the many with it. I too have DF508 and hope to get on that drug too!
 
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LouLou

New member
hmm. interesting I thought they'd already submitted and that we were just awaiting approval. I've been in this study since 2008 and am on open label (which means I have drug). I look forward to this drug being approved so that my 4 year old can start it (off label use). I also want it approved so that total focus can be put on DF508 for the many with it. I too have DF508 and hope to get on that drug too!
 
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bigstar

New member
Those that are on the drug right now can share indo with us? How their lives changed? Their routine as far as meds are concerned? They continue doing other drugs? God i have so many questions!

PS is the price estimated yet?
 
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bigstar

New member
Those that are on the drug right now can share indo with us? How their lives changed? Their routine as far as meds are concerned? They continue doing other drugs? God i have so many questions!

PS is the price estimated yet?
 
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bigstar

New member
Those that are on the drug right now can share indo with us? How their lives changed? Their routine as far as meds are concerned? They continue doing other drugs? God i have so many questions!
<br />
<br />PS is the price estimated yet?
 
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LouLou

New member
Bigstar, The open label is considered an extension of the trial and they had us sign another confidentiality agreement. Soo...I am not able to answer questions about the trial. That said I can tell you about myself as I would anyway on this site. I have no problem qualifying for disability as I still require nebulized antiobiotics prophylactically and IV meds periodically. My med routine and care routine has not changed. My life is good. My FEV1 is in the mid 60s. Perhaps that's not that helpful but I believe I've answered your questions and I can't give you before and after data.

Regarding the price I can tell you that is completely up to the pharma co. and not involved with the CFF at all. I've heard between $125,000-250,000 annually.
 
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LouLou

New member
Bigstar, The open label is considered an extension of the trial and they had us sign another confidentiality agreement. Soo...I am not able to answer questions about the trial. That said I can tell you about myself as I would anyway on this site. I have no problem qualifying for disability as I still require nebulized antiobiotics prophylactically and IV meds periodically. My med routine and care routine has not changed. My life is good. My FEV1 is in the mid 60s. Perhaps that's not that helpful but I believe I've answered your questions and I can't give you before and after data.

Regarding the price I can tell you that is completely up to the pharma co. and not involved with the CFF at all. I've heard between $125,000-250,000 annually.
 
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LouLou

New member
Bigstar, The open label is considered an extension of the trial and they had us sign another confidentiality agreement. Soo...I am not able to answer questions about the trial. That said I can tell you about myself as I would anyway on this site. I have no problem qualifying for disability as I still require nebulized antiobiotics prophylactically and IV meds periodically. My med routine and care routine has not changed. My life is good. My FEV1 is in the mid 60s. Perhaps that's not that helpful but I believe I've answered your questions and I can't give you before and after data.
<br />
<br />Regarding the price I can tell you that is completely up to the pharma co. and not involved with the CFF at all. I've heard between $125,000-250,000 annually.
 
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