CFV Press Note

Banner - Press Note

Our Health System is ailing and leaving Australians at risk.

April 2016: The recent decision by the PBAC defies belief and leaves the 1,000 Australians with the two copies of the F508del cystic fibrosis gene mutation stranded. This is a health peril that must be addressed and the Cystic Fibrosis community says… “This is not acceptable”.
Australia is a country that prides itself on an equitable and fair health system, but people who need life changing drugs are sadly refused access due to cost and the “evidence of substantial benefits”. Meanwhile, Orkambi has shown to positively influence lives of people with CF who need it the most:

  • Improved lung function: Clinical trials in Australia and across the world provided solid evidence that Orkambi, a new generation drug for cystic fibrosis, improved lung function and reduced exacerbations, hospitalisation and antibiotic use.

  • Better nutrition: Trial participants reported improved nutrition and subsequent BMI increases, both of which have the capacity to stave off diabetes.

  • Better mental health: Orkambi had a positive effect on the mental health of people with CF leading to social inclusion and a reduction in personal and family stress. 

Click here for more on the clinical trial results.

What more do the drug funding adjudicators need?

Vertex, the pharmaceutical company that developed Orkambi, is now required to resubmit to the PBAC meeting in November this year. Delays of this nature are unacceptable as each day a person is denied access to Orkambi is another day of potential life limiting lung damage. Orkambi has been approved in the United States and Cystic Fibrosis Victoria believes that Australians should be granted the same access.

Get involved

FOR MEDIA: With a Federal election two months away, it is time to make sure our local politicians know the issues that are important to the CF community and we have a wealth of amazing stories that prove the determination of our people. If you would like to interview member(s) of the VIC community with CF, please contact Cystic Fibrosis Victoria on or call (03) 9686 1811.
Click here for more information on Orkambi
FOR COMMUNITY MEMBERS: With a Federal election two months away it is time to make sure your local members know the issues that are important to the CF community. Cystic Fibrosis Australia has prepared some arguments that support our case and prepared a sample letter, which you can customise and use to appeal to you local politicians.

Click here for the letter template 

Click here for more on CF advocacy