G551D Australian coming to the US for Ivacaftor (Kalydeco)

[kirstynkoffs]

You should contact the prince charles hospital in brisbane i think they have a patient who is purchasing the drug and im fairy sure they are not going to the states for the script. They may have found a dr who will write it up as they are so well connected.

 

[kirstynkoffs]

You should contact the prince charles hospital in brisbane i think they have a patient who is purchasing the drug and im fairy sure they are not going to the states for the script. They may have found a dr who will write it up as they are so well connected.

 

[fly30]

Hi Mima, it's not the facebook page I was referring to. The site is cysticfibrosisnsw.org.au
You may have to register to log into the forums. It's one of the first few topics in the adult section.
Krstyn is right, I also read a thread posted on the same forum about a guy from Bisbane on Kalydeco. Although I think he is on the trail, hence the reason he has access to the drug.

Best of luck!

 

[fly30]

Hi Mima, it's not the facebook page I was referring to. The site is cysticfibrosisnsw.org.au
You may have to register to log into the forums. It's one of the first few topics in the adult section.
Krstyn is right, I also read a thread posted on the same forum about a guy from Bisbane on Kalydeco. Although I think he is on the trail, hence the reason he has access to the drug.

Best of luck!

 

[Aboveallislove]

I woke this am with another thought: From some of the things I've read (see <a href="http://saltyspark.blogspot.com/2012/03/kalydeco-for-class-i-and-class-ii.html">http://saltyspark.blogspot.com/2012/03/kalydeco-for-class-i-and-class-ii.html</a> ), it seems that some of those struggling have some discomfort and/or lots of mucus plugs releasing right after starting Kalydeco, but then rather quickly get an energy boost/feel much better. You mentioned getting the meds and jumping back on the plane. I wonder if it is at all possible that you stay for 2weeks since the Phase 3 studies showedthelung-function improvement happened quickly--by 2 weeks--and stayed at that level then for the entire length of the study (48 weeks). That might give your dear daughter a chance to recoup from the long flight before getting back on the plane. If not, maybe it makes sense not to start until arriving again in Australia. I'm hoping you don't need to make the trip from some of the other posts and that you can get there, but if you do, wanted to through those ideas out FWIW.

 

[Aboveallislove]

I woke this am with another thought: From some of the things I've read (see <a href="http://saltyspark.blogspot.com/2012/03/kalydeco-for-class-i-and-class-ii.html">http://saltyspark.blogspot.com/2012/03/kalydeco-for-class-i-and-class-ii.html</a> ), it seems that some of those struggling have some discomfort and/or lots of mucus plugs releasing right after starting Kalydeco, but then rather quickly get an energy boost/feel much better. You mentioned getting the meds and jumping back on the plane. I wonder if it is at all possible that you stay for 2weeks since the Phase 3 studies showedthelung-function improvement happened quickly--by 2 weeks--and stayed at that level then for the entire length of the study (48 weeks). That might give your dear daughter a chance to recoup from the long flight before getting back on the plane. If not, maybe it makes sense not to start until arriving again in Australia. I'm hoping you don't need to make the trip from some of the other posts and that you can get there, but if you do, wanted to through those ideas out FWIW.

 

[Taylersmom]

I would not recommend Loma Linda University in San Berdino , California.. They are not RXing it to anyone! I am beyond frustrated!

 

[Taylersmom]

I would not recommend Loma Linda University in San Berdino , California.. They are not RXing it to anyone! I am beyond frustrated!

 

[GenH]

mima63- fly30 is talking about the cfa forums, I started the topic there (and also here) over a month ago. Not many people visit the cfa site & the info on the facebook page is much more up to date than the forum now! Fly30- Idis (distributor outside of the US) have said that Vertex need to speak to the TGA (like the FDA) before Kalydeco can be distributed in Australia. So neither company is distrubuting here, even for people below 40%. Vertex have said they will approach the TGA this year. Our TGA process takes at least 9 months, and then it has to get listed on our PBS (government subsidy scheme for medications, otherwise we would have to pay $294,000- our private health does not pay this), so we are looking at the second half of next year. There is a person who is at 25% (and I am sure there are others below 40%, in 2009 there were 159 G551D people), so hopefully they will get it soon.

 

[GenH]

mima63- fly30 is talking about the cfa forums, I started the topic there (and also here) over a month ago. Not many people visit the cfa site & the info on the facebook page is much more up to date than the forum now! Fly30- Idis (distributor outside of the US) have said that Vertex need to speak to the TGA (like the FDA) before Kalydeco can be distributed in Australia. So neither company is distrubuting here, even for people below 40%. Vertex have said they will approach the TGA this year. Our TGA process takes at least 9 months, and then it has to get listed on our PBS (government subsidy scheme for medications, otherwise we would have to pay $294,000- our private health does not pay this), so we are looking at the second half of next year. There is a person who is at 25% (and I am sure there are others below 40%, in 2009 there were 159 G551D people), so hopefully they will get it soon.