Kalydeco on verge of PBS listing - CF Buzz

The following extract is a press release released by Cystic Fibrosis Australia on February 5th 2017.

Cystic Fibrosis Australia (CFA) has been reliably informed that Kalydeco will be made available on the PBS to children between the ages of 2 and 5 years who have a CF gating mutation.

CFA would like to sincerely thank the Health Minister, Greg Hunt and his team and the PBAC Chair for accepting the recent Kalydeco submission by Vertex and holding an out of session meeting to review new data that enabled them to make a positive recommendation to the Minister.

Vertex should be acknowledged as well for achieving this outcome and we believe that the Minister and Vertex are working together to enable ‘early access’ until listing. Vertex and the Government are well aware of the pressure that Kalydeco families are under and so CFA is demanding immediate access to Kalydeco and the end to a great deal of waiting. Until the Health Minister makes a formal announcement there is little more we can say but following the declaration CFA will be able to answer many of your questions.

We submitted a list of queries to Vertex so we get the right facts for you in record time. Disappointingly, there has been no further news on Orkambi but CFA can confirm that Vertex will submit a further proposal to the PBAC in March 2017 and hopefully it will be accepted and make it on to the July PBAC Agenda.

Canberra Protest is still happening, as we must support the 1,000 people who need access to Orkambi. Congratulations must go to each and every one of you in the CF community. You are an amazing group of passionate people and this fervor has not gone unnoticed.

Our advocacy efforts have had an amazing, positive result and now let’s fire up again for Orkambi. Please call me on the mobile at anytime if you would like to chat. However there will be a few things I can’t discuss before the Minister’s formal announcement. Yours sincerely


Nettie Burke


Cystic Fibrosis Australia

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