SIX MONTHS AND STILL WAITING FOR SYMDEKO LISTING

08 September 2019


Today is Worldwide Cystic Fibrosis day and should serve as a reminder to the Government on their responsibilities to care for the 3,500 Australians living with cystic fibrosis.

Greg Hunt made a promise to those with cystic fibrosis they would have access to new treatment drug, SYMDEKO on the PBS as soon as it was approved.

The drug, which is a form of cystic fibrosis transmembrane conductance regulator, treats the most common cystic fibrosis mutation, extending life expectancy and improving quality of life.

It was approved by the PBAC for listing on the PBSfor those who suffer cystic fibrosis with the F508del mutation gene during the March PBAC meeting.

This means SYMDEKO was approved six months ago, and the Minister still hasnt listed it, despite promising to do so.

SYMDEKO just isnt affordable for the people who need it most without being subsidised on the PBS.

The Minister extended ORKAMBI on the PBS after it was recommended at the March PBAC meeting, why hasnt he done the same for SYMDEKO?

Minister must listen to Australias pharmaceutical experts, listen to cystic fibrosis patients and list SYMDEKO on the PBS.