CEO Update on Orkambi, 23 May 2016
A month ago today we were devastated with the news that the PBAC rejected Vertex’s proposal for the reimbursement of the cost of Orkambi. We have had great support from the community, our clinicians, CF CAN and the media. It's time to contact the Politicians. For more.
CEO Update on Orkambi, 17 May 2016
The PBAC ruling rejecting the reimbursement of Orkambi and the lack of support and interest in healthcare in the Federal Government’s budget have caused a great deal of disappointment and dissatisfaction in the cystic fibrosis community. After recent let downs … what do we do now? To see how you can help, click here.
Carrier Screening Education Campaign
Almost all children born with cystic fibrosis are born into families where there is no known family history. Cystic Fibrosis Victoria has launched a Community Education Campaign on Carrier Screening to help create awareness of CF and the availability of Carrier Screening. For more information, click here.
CEO Update on Orkambi, 27 April 2016
Our health system is ailing and placing Australians at risk. Cystic Fibrosis Australia is calling on the community to find their voice and shout out … “This is not acceptable”. Read the full Communique from CFA CEO Nettie Burke.
Orkambi advocacy supported by Sonia and Evie Marshall. For the full article
PBAC Announcement 22 April 2016
Sadly there are many disappointed Australians today as we digest the news that Orkambi, the latest new generation drug for cystic fibrosis, will not be recommended for reimbursement by the Pharmaceutical Benefits Advisory Committee (PBAC) for Australians with cystic fibrosis (CF). For more...
Cystic Fibrosis CEO, Nettie Burke appeared in an SBS Interview on Friday, Breakthrough cystic fibrosis drug rejected by Australian authorities.
CEO update on Orkambi, 29 January 2016
Canadians over the age of 12 with two copies of the F508del mutation are celebrating this week the approval of Orkambi byHealth Canada. Read the latest from CFA CEO Nettie Burke>
Cystic Fibrosis Australia (CFA)
CFA is a national not-for-profit organisation and the national body supporting people with Cystic Fibrosis. CFA comprises member State/Territory Cystic Fibrosis organisations. CFA's mission is to deliver research, advocacy and quality improvement outcomes supporting people with CF and be the peak national body supporting our State/Territory members with their goals to enhance the quality of life of people affected by CF.
We do this by:
- Collecting and distributing information about CF at a national and international level
- Building networks with acclaimed CF physicians, researchers and CF organisations in Australia
- Organising the biennial Australasian CF Conference
- Developing educational publications to support CF State organisations in their work
- Securing funds for the Australian Cystic Fibrosis Research Trust and assembling the professional expertise needed to administer CF research projects throughout Australia
- Developing a roadmap for CF research in Australia in conjunction with the Australian Cystic Fibrosis Research Trust (ACFRT)
- Sourcing funding support for, and administering the Australian Cystic Fibrosis Data Registry
- Assisting with developing national policy and advocating for change to bring benefits to people with cystic fibrosis and their families
Promote quality improvement in health care
- Facilitate the development and review of national guidelines for ‘Standards of Cystic Fibrosis Care’ and ‘Infection Control Guidelines’
- Resource and coordinate the ‘Peer Review of Cystic Fibrosis Clinics in Australia’
- Publish the Annual Australian Cystic Fibrosis Data Registry Report for use by clinics and researchers
- Organising national fundraising campaigns such as ‘65 Roses’ each May to raise awareness of CF and funds for research and education programs and more.
How you can help
Donations and sponsorships are vital to advance research into CF, conduct advocacy and to ensure improvement in health care services available to people living with CF. You can contribute to helping improve the quality of life of those who live with CF by donating today.