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).
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VX -770 for Australians
- Thread starter mima63
- Start date
okay <img src="i/expressions/face-icon-small-smile.gif" border="0"> I've been having trouble posting on here. I did write a response to you the other day but it didnt work <img src="i/expressions/face-icon-small-sad.gif" border="0"> Mima are you on FB? Someone has set up a great page on FB where people are posting lots of updates regarding the conference in the US and the success of the v770 (now known as Kalydeco). It's all go, go, go from what Im reading <img src="i/expressions/face-icon-small-smile.gif" border="0">
What we will need to do here is get this drug on to the PBS so we can afford it. I think it will go to market in the US around June 2012 (not sure), and dont know when we will get it here. I'm thinking of writing lobbying letters to my local member (Greg Combet) and trying to get CF Australia on board too fo rthe PBS. If we cant get it on PBS it might cost $60K a year (I dont know but this is one estimate I read somewhere).
The problem we will have with Kalydeco is that it only works for a small percentage of the cf population (at this time), which may impact on the success of getting the drug on PBS (unitl theey are successful with the 809x770 for DF508). Let me know if you're on FB and I'll add you to this FB group (praying for success 809/770). Im in Newcastle.
What we will need to do here is get this drug on to the PBS so we can afford it. I think it will go to market in the US around June 2012 (not sure), and dont know when we will get it here. I'm thinking of writing lobbying letters to my local member (Greg Combet) and trying to get CF Australia on board too fo rthe PBS. If we cant get it on PBS it might cost $60K a year (I dont know but this is one estimate I read somewhere).
The problem we will have with Kalydeco is that it only works for a small percentage of the cf population (at this time), which may impact on the success of getting the drug on PBS (unitl theey are successful with the 809x770 for DF508). Let me know if you're on FB and I'll add you to this FB group (praying for success 809/770). Im in Newcastle.
okay <img src="i/expressions/face-icon-small-smile.gif" border="0"> I've been having trouble posting on here. I did write a response to you the other day but it didnt work <img src="i/expressions/face-icon-small-sad.gif" border="0"> Mima are you on FB? Someone has set up a great page on FB where people are posting lots of updates regarding the conference in the US and the success of the v770 (now known as Kalydeco). It's all go, go, go from what Im reading <img src="i/expressions/face-icon-small-smile.gif" border="0">
What we will need to do here is get this drug on to the PBS so we can afford it. I think it will go to market in the US around June 2012 (not sure), and dont know when we will get it here. I'm thinking of writing lobbying letters to my local member (Greg Combet) and trying to get CF Australia on board too fo rthe PBS. If we cant get it on PBS it might cost $60K a year (I dont know but this is one estimate I read somewhere).
The problem we will have with Kalydeco is that it only works for a small percentage of the cf population (at this time), which may impact on the success of getting the drug on PBS (unitl theey are successful with the 809x770 for DF508). Let me know if you're on FB and I'll add you to this FB group (praying for success 809/770). Im in Newcastle.
What we will need to do here is get this drug on to the PBS so we can afford it. I think it will go to market in the US around June 2012 (not sure), and dont know when we will get it here. I'm thinking of writing lobbying letters to my local member (Greg Combet) and trying to get CF Australia on board too fo rthe PBS. If we cant get it on PBS it might cost $60K a year (I dont know but this is one estimate I read somewhere).
The problem we will have with Kalydeco is that it only works for a small percentage of the cf population (at this time), which may impact on the success of getting the drug on PBS (unitl theey are successful with the 809x770 for DF508). Let me know if you're on FB and I'll add you to this FB group (praying for success 809/770). Im in Newcastle.
okay <img src="i/expressions/face-icon-small-smile.gif" border="0"> I've been having trouble posting on here. I did write a response to you the other day but it didnt work <img src="i/expressions/face-icon-small-sad.gif" border="0"> Mima are you on FB? Someone has set up a great page on FB where people are posting lots of updates regarding the conference in the US and the success of the v770 (now known as Kalydeco). It's all go, go, go from what Im reading <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />What we will need to do here is get this drug on to the PBS so we can afford it. I think it will go to market in the US around June 2012 (not sure), and dont know when we will get it here. I'm thinking of writing lobbying letters to my local member (Greg Combet) and trying to get CF Australia on board too fo rthe PBS. If we cant get it on PBS it might cost $60K a year (I dont know but this is one estimate I read somewhere).
<br />
<br />The problem we will have with Kalydeco is that it only works for a small percentage of the cf population (at this time), which may impact on the success of getting the drug on PBS (unitl theey are successful with the 809x770 for DF508). Let me know if you're on FB and I'll add you to this FB group (praying for success 809/770). Im in Newcastle.
<br />
<br />What we will need to do here is get this drug on to the PBS so we can afford it. I think it will go to market in the US around June 2012 (not sure), and dont know when we will get it here. I'm thinking of writing lobbying letters to my local member (Greg Combet) and trying to get CF Australia on board too fo rthe PBS. If we cant get it on PBS it might cost $60K a year (I dont know but this is one estimate I read somewhere).
<br />
<br />The problem we will have with Kalydeco is that it only works for a small percentage of the cf population (at this time), which may impact on the success of getting the drug on PBS (unitl theey are successful with the 809x770 for DF508). Let me know if you're on FB and I'll add you to this FB group (praying for success 809/770). Im in Newcastle.
ps to you question livingloving...we accessed the trial because I tracked it down due to posts on here by Lauren (Loulou) and Amy (Noexcuses) back a couple of years ago. Lauren had been in the ph2b and I read about her experiences. They alearted everyone ot the ph3 trial starting up...I am so incredibily grateful for the internet <img src="i/expressions/face-icon-small-smile.gif" border="0">
Anyhow, my three children all tried to get in the trial and could have except my daughter fell pregnant and my then 13 year old couldnt face the onthly blood tests so he didnt continue with the trial. My oldest son did and was on the drug all the way through. He knew almost immediately that he was on the drug (that tells you how different he felt).
He is still on the drug because that was part of the deal. He is on Open label trial, where everyone who participated originally (whether they received the real drug or placebo) got to continue to receive the real drug until it comes to market. My other two ar enot on the drug and we cant access it (unless we steal it off my older son hahaha).
Anyhow, my three children all tried to get in the trial and could have except my daughter fell pregnant and my then 13 year old couldnt face the onthly blood tests so he didnt continue with the trial. My oldest son did and was on the drug all the way through. He knew almost immediately that he was on the drug (that tells you how different he felt).
He is still on the drug because that was part of the deal. He is on Open label trial, where everyone who participated originally (whether they received the real drug or placebo) got to continue to receive the real drug until it comes to market. My other two ar enot on the drug and we cant access it (unless we steal it off my older son hahaha).
ps to you question livingloving...we accessed the trial because I tracked it down due to posts on here by Lauren (Loulou) and Amy (Noexcuses) back a couple of years ago. Lauren had been in the ph2b and I read about her experiences. They alearted everyone ot the ph3 trial starting up...I am so incredibily grateful for the internet <img src="i/expressions/face-icon-small-smile.gif" border="0">
Anyhow, my three children all tried to get in the trial and could have except my daughter fell pregnant and my then 13 year old couldnt face the onthly blood tests so he didnt continue with the trial. My oldest son did and was on the drug all the way through. He knew almost immediately that he was on the drug (that tells you how different he felt).
He is still on the drug because that was part of the deal. He is on Open label trial, where everyone who participated originally (whether they received the real drug or placebo) got to continue to receive the real drug until it comes to market. My other two ar enot on the drug and we cant access it (unless we steal it off my older son hahaha).
Anyhow, my three children all tried to get in the trial and could have except my daughter fell pregnant and my then 13 year old couldnt face the onthly blood tests so he didnt continue with the trial. My oldest son did and was on the drug all the way through. He knew almost immediately that he was on the drug (that tells you how different he felt).
He is still on the drug because that was part of the deal. He is on Open label trial, where everyone who participated originally (whether they received the real drug or placebo) got to continue to receive the real drug until it comes to market. My other two ar enot on the drug and we cant access it (unless we steal it off my older son hahaha).
ps to you question livingloving...we accessed the trial because I tracked it down due to posts on here by Lauren (Loulou) and Amy (Noexcuses) back a couple of years ago. Lauren had been in the ph2b and I read about her experiences. They alearted everyone ot the ph3 trial starting up...I am so incredibily grateful for the internet <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Anyhow, my three children all tried to get in the trial and could have except my daughter fell pregnant and my then 13 year old couldnt face the onthly blood tests so he didnt continue with the trial. My oldest son did and was on the drug all the way through. He knew almost immediately that he was on the drug (that tells you how different he felt).
<br />
<br />He is still on the drug because that was part of the deal. He is on Open label trial, where everyone who participated originally (whether they received the real drug or placebo) got to continue to receive the real drug until it comes to market. My other two ar enot on the drug and we cant access it (unless we steal it off my older son hahaha).
<br />
<br />Anyhow, my three children all tried to get in the trial and could have except my daughter fell pregnant and my then 13 year old couldnt face the onthly blood tests so he didnt continue with the trial. My oldest son did and was on the drug all the way through. He knew almost immediately that he was on the drug (that tells you how different he felt).
<br />
<br />He is still on the drug because that was part of the deal. He is on Open label trial, where everyone who participated originally (whether they received the real drug or placebo) got to continue to receive the real drug until it comes to market. My other two ar enot on the drug and we cant access it (unless we steal it off my older son hahaha).