Are there any other Australians that did not participate in the trial of VX -770 (Ivacafor - generic name or Kalydeco- brand name) who have successfully accessed this drug? My 22yo daughter has one copy of G551D mutation (the other is delta F508) and is experiencing an exacerbation of her respiratory symptoms. I desperately need to find out how we can access this drug. Anyone that can give advice, including people in other countries please let me know. We are willing to travel.
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VX -770 for Australians
- Thread starter mima63
- Start date
Are there any other Australians that did not participate in the trial of VX -770 (Ivacafor - generic name or Kalydeco- brand name) who have successfully accessed this drug? My 22yo daughter has one copy of G551D mutation (the other is delta F508) and is experiencing an exacerbation of her respiratory symptoms. I desperately need to find out how we can access this drug. Anyone that can give advice, including people in other countries please let me know. We are willing to travel.
Are there any other Australians that did not participate in the trial of VX -770 (Ivacafor - generic name or Kalydeco- brand name) who have successfully accessed this drug? My 22yo daughter has one copy of G551D mutation (the other is delta F508) and is experiencing an exacerbation of her respiratory symptoms. I desperately need to find out how we can access this drug. Anyone that can give advice, including people in other countries please let me know. We are willing to travel.
livinglovinggrace
New member
Hello and welcome<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am unable to answer your question however I am interested to see if there are any aussies that can. Lets hope and pray that we see a fast track of this drug. Incase any people who did participate in the studies read this i would love to know if you were granted access to the drug post study the same as in the US?
Thanks for posting mima63, your daughter is my age<img src="i/expressions/face-icon-small-smile.gif" border="0"> best of luck and please let us know if you find out more.
Thanks for posting mima63, your daughter is my age<img src="i/expressions/face-icon-small-smile.gif" border="0"> best of luck and please let us know if you find out more.
livinglovinggrace
New member
Hello and welcome<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am unable to answer your question however I am interested to see if there are any aussies that can. Lets hope and pray that we see a fast track of this drug. Incase any people who did participate in the studies read this i would love to know if you were granted access to the drug post study the same as in the US?
Thanks for posting mima63, your daughter is my age<img src="i/expressions/face-icon-small-smile.gif" border="0"> best of luck and please let us know if you find out more.
Thanks for posting mima63, your daughter is my age<img src="i/expressions/face-icon-small-smile.gif" border="0"> best of luck and please let us know if you find out more.
livinglovinggrace
New member
Hello and welcome<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am unable to answer your question however I am interested to see if there are any aussies that can. Lets hope and pray that we see a fast track of this drug. Incase any people who did participate in the studies read this i would love to know if you were granted access to the drug post study the same as in the US?
<br />
<br />Thanks for posting mima63, your daughter is my age<img src="i/expressions/face-icon-small-smile.gif" border="0"> best of luck and please let us know if you find out more.
<br />
<br />Thanks for posting mima63, your daughter is my age<img src="i/expressions/face-icon-small-smile.gif" border="0"> best of luck and please let us know if you find out more.
Hi, im not sure how it all works. But, i dont think anyone has access to the drug while its in the trial phase. Unless offcourse you are in the trial. Even then, you may not know whether its the drug or placebo. I too am from Australia, and i think the only place they are running trials is in Queansland. You may want to call CF Australia, as would no a whole lot more on the topic or even your clinic. All the best to your daughter and i hope she gets better soon xx
Hi, im not sure how it all works. But, i dont think anyone has access to the drug while its in the trial phase. Unless offcourse you are in the trial. Even then, you may not know whether its the drug or placebo. I too am from Australia, and i think the only place they are running trials is in Queansland. You may want to call CF Australia, as would no a whole lot more on the topic or even your clinic. All the best to your daughter and i hope she gets better soon xx
<BR>Hi, im not sure how it all works. But, i dont think anyone has access to the drug while its in the trial phase. Unless offcourse you are in the trial. Even then, you may not know whether its the drug or placebo. I too am from Australia, and i think the only place they are running trials is in Queansland. You may want to call CF Australia, as would no a whole lot more on the topic or even your clinic. All the best to your daughter and i hope she gets better soon xx
Thank you all for your responses and advice. I rang Vertex and I believe my daughter will need to join a clinical trial. Cindy, from Vertex was very helpful and directed me to the correct US government website that shows where the trials are being held. I think my daughter will qualify for some of those, but if not, we are willing to travel to anywhere to participate.
Thank you all for your responses and advice. I rang Vertex and I believe my daughter will need to join a clinical trial. Cindy, from Vertex was very helpful and directed me to the correct US government website that shows where the trials are being held. I think my daughter will qualify for some of those, but if not, we are willing to travel to anywhere to participate.
Thank you all for your responses and advice. I rang Vertex and I believe my daughter will need to join a clinical trial. Cindy, from Vertex was very helpful and directed me to the correct US government website that shows where the trials are being held. I think my daughter will qualify for some of those, but if not, we are willing to travel to anywhere to participate.
Im in Australia (my son has been in the trial but my other two havent) and contacted Vertex about the expanded access. It isnt possible to get onto the drug yet, we will have to wait til the FDA apporves it and than see how we can get it here. We need to get it onto the PBS too or it will cost a fortune. Otherwise here's only the trials, but I think they're all running...dont know. If your daughter gets into a trial she may not be given the drug anyhow and might receive a placebo (something to keep in mind). All the best. We're in NSW and my son has been particpating in a trial at Westmead (Sydney).
Im in Australia (my son has been in the trial but my other two havent) and contacted Vertex about the expanded access. It isnt possible to get onto the drug yet, we will have to wait til the FDA apporves it and than see how we can get it here. We need to get it onto the PBS too or it will cost a fortune. Otherwise here's only the trials, but I think they're all running...dont know. If your daughter gets into a trial she may not be given the drug anyhow and might receive a placebo (something to keep in mind). All the best. We're in NSW and my son has been particpating in a trial at Westmead (Sydney).