Australian wanting to get Kalydeco from USA or UK (or anywhere!)

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Shani

New member
Hi all. Unfortunately Kalydeco (Ivacaftor) is not yet available in Australia. Well it is, but it is $300,000 per year (well outside the price range we can afford unfortunately). We are desperately seeking a way of getting the drug from USA or UK. Does anyone know if this is possible? Has anyone done it? Can anyone work out a way it can be done? It is unbearable to know that Kalydeco is out there and can help my daughter lead a normal life, but we can't get it. Any offers of information would be most appreciated. We are prepared to do what needs to be done to get access to this life saving medication. Thank you
 
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Gibson75

Guest
Hi Shani,
I'm with you!
We are in Australia too and even though my boy is too young at the moment, in years to come he would benefit as well. Goodluck!
 
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dasjsmum

New member
Hi

Kalydeco is currently being reviewed by the PBAC (outcome due 23/8/13). Hopefully it will be placed on the PBS. We have an Aussie FB group which is also connected to the CF Ass to lobby for the drug.

PS you cant obtain the drug in the manner you're asking about. If you have 40% or less FEV1 you can obtain K in Australia through Vertex on complassionate grounds. Otherwise we are lobbying the government to get it. Your other option is to move to the UK or US!

https://www.facebook.com/groups/343431685698805/
 
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GenH

New member
Shani said:
Hi all. Unfortunately Kalydeco (Ivacaftor) is not yet available in Australia. Well it is, but it is $300,000 per year (well outside the price range we can afford unfortunately). We are desperately seeking a way of getting the drug from USA or UK. Does anyone know if this is possible? Has anyone done it? Can anyone work out a way it can be done? It is unbearable to know that Kalydeco is out there and can help my daughter lead a normal life, but we can't get it. Any offers of information would be most appreciated. We are prepared to do what needs to be done to get access to this life saving medication. Thank you
Click to expand...

Hi Shani, I'm pretty sure that I have spoken to you on facebook, but I'm responding just in case anyone else has the same question.

As dasjsmum mentioned, there is a program called the Named Patient Program, designed for those under 40% FEV1. There is also a new trial in Victoria. I am not aware of other options to obtain Kalydeco in Australia before PBS listing. We will know more about when Kalydeco may be available after the November PBAC meeting.

In order to access Kalydeco in another country, I would imagine you would need a passport/to be living there.

There is more information on our facebook and twitter pages: https://www.facebook.com/groups/343431685698805/ and https://twitter.com/KalydecoAus

Anyone from outside of Australia is welcome to join the facebook group or follow our campaign on twitter.
 
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