Over the last month a Named Patient Program has been developed in Australia and people below 40% FEV1 now have access to Kalydeco prior to TGA approval & PBS listing. The next step is TGA approval (like the FDA and EMA), hopefully Vertex will apply later this year. The TGA process is normally 9 months. After that it needs to be listed on the PBS so we can access it at a cheaper price! The PBS listing process is at least 4 months. So hopefully we are looking at the second half of next year...The updates from Cystic Fibrosis Australia have been uploaded here:http://www.cysticfibrosis.org.au/nsw/kalydecoinaustralia/There is also lots of information about Kalydeco & how we are trying to speed up the approval process for Kalydeco at the 'Kalydeco for Australians' facebook group. Anyone is welcome to join, particularly those from Australia!www.facebook.com/groups/343431685698805/
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Kalydeco in Australia Update
- Thread starter GenH
- Start date
In Australia people can buy it now for $234,000 & its apparently 180,000 euros in Spain (someone on the Vx770/809 facebook group said this), with the exchange rate they are about the same. In Australia not many can afford it at $234,000 though! (aus and us dollar are pretty much the same) We dont know what the official price will be until it goes through the TGA and PBS, I imagine the price would be negotiated over here as $234,000 is much higher than any other CF medication and it will make it hard to get listed on the Australian health system (PBS)...
Interesting, will have to wait and see what happens with the approval process. I'd imagine it would have to come down from 234K for the PBS. I'd always imagined it would have to be priced at some multiple of average hospital admission costs to make it practical - which as I understand it are significantly less than the US.
Will be watching intently.
Thanks again for the great info GenH.
Will be watching intently.
Thanks again for the great info GenH.
A paper came out last year that said the average cost in Australia was $22,366 per cf per year. This was based on data from 03, 04 and 05, so it is probably more now (we now have tobi and tadim so they would increase the cost). G551D people above age 6 would also be likely to cost more on average (older and a relatively 'severe' mutation). Even if it is 40,000 to 50,000 now that still makes $234,000 much higher...
http://www.chere.uts.edu.au/pdf/wp2011_1.pdf
http://www.chere.uts.edu.au/pdf/wp2011_1.pdf
The 2010 data from Cystic Fibrosis Australia says there are about 240 people with G551D & 200 above age 6, so there are a reasonable amount of people (and hence total cost). I think there are about 3000 people total so that makes it 8%- probably due to a large number of us coming from Ireland & the UK many years ago. This data includes about 80% of the patients so it may be higher than 240.