Vertex Meeting Update (3 September 2014)
CFA would like to report that the meeting today with Vertex was postponed, however we are very pleased to advise that the postponement was due to Vertex attending a meeting with the DOH to submit an updated proposal for the listing of Kalydeco (ivacaftor) on the PBS.
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Kalydeco Update (28 August 2014)
As reported last week CFA will be hosting an important meeting with Vertex on the 3rd September to strongly advocate for a timely response to the Summary Statement from the meeting held on the 31st July with the DOH, Australian CF Physicians and CFA regarding PBS subsidy of Kalydeco.
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CFA secures meeting with Vertex
CFA are pleased to advise that a meeting with Vertex has now been agreed for the 3rd September to discuss the new criteria proposed in the Summary Statement document from the meeting held on the 31st July.
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Department of Health Meeting
Vertex Response to DOH Summary Statement - Please click here for Vertex response
A stakeholder meeting was held on the 31st of July 2014 to discuss the Pharmaceuticals Benefits Scheme (PBS) listing of Ivacaftor (Kalydeco) for treatment of cystic fibrosis in patients aged six years and older who have the G551D mutation in the CFTR (cystic fibrosis transmembrane conductance regulator) gene.
The meetings outcome statement reflects the pay for performance framework recommended by the Pharmaceutical Benefits Advisory Committee (PBAC) in March 2014, under which all eligible patients could be treated with PBS-subsidised Ivacaftor but the price paid by the Government varies depending on the magnitude of the benefit gained by patients, in recognotion that not all patients respond equally to treatment. Should the pay for performance framework not be successfully negotiated with the sponsor of the medicine, the criteria for response could be used as stopping rules in a manner similar to many other PBS listings.
The detailed statement is below.
CFA and the CF Federation is acutely aware of the need for this new treatment to be made available and recognise the concern that the delay in the PBS listing is causing our community. We continue to advocate strongly for the CF community on this issue.
Welcome to the CF Federation, Australia
Cystic Fibrosis (CF) is the most common, genetically acquired, life-shortening chronic illness affecting young Australians today.
It primarily affects the lungs and the digestive system, however, it also affects a number of other organs and systems.
Complications increase with age, requiring ever increasing levels of (self) care and support.
On average one in 25 people carry the CF gene (most of whom are unaware they are carriers).
To find out more about CF click ABOUT CF on the toolbar above.
Cystic Fibrosis support services organisations exist in every major jurisdiction of Australia, with the exception of the Northern Territory.
People living with CF in the Northern Territory are often supported by one or more of the adjoining CF organisations.
To contact your nearest CF organisation click CONTACT US on the toolbar above.
Most CF organisations in Australia began as member peer-support and self-help groups, growing over time to member services associations.
Today nearly all of these are modern not-for-profit health support services and research organisations involved with every aspect of living with
Cystic Fibrosis in their jurisdictions, including providing support services, raising public awareness, promoting carrier screening,
supporting research and lobbying for better health and wellbeing outcomes for those living with CF.
To find out more select the relevant entity on the map of Australia at top right of screen.
In 2003 Cystic Fibrosis Australia was incorporated as a company limited by guarantee with a number of the larger CF organisations as founding members and guarantors. Cystic Fibrosis Australia is focussed on national sponsorship, advocacy and awareness raising and on the promotion and funding of research.
All State and Territory CF organisations together with Cystic Fibrosis Australia work together collaboratively in a loosely coupled network to ensure better standards of care and quality of life for all Australians living with Cystic Fibrosis.
Funding for research into Cystic Fibrosis in Australia is through two principal foundations: the Australian Cystic Fibrosis Research Trust (ACFRT) and Cystic Fibrosis Research Limited. To learn more about CF research select RESEARCH on the toolbar above.