Life-changing medicines listings to save cystic fibrosis patients up to $250,000 a year

November 22, 2019

People with cystic fibrosis now have access to life-changing medicines through the Pharmaceutical Benefits Scheme (PBS), saving them and their families up to $250,000 a year.

Federal Member for Wide Bay Llew O’Brien today welcomed the announcement, which will provide new or improved treatment options for more than 1400 patients.
From 1 December 2019, the life-changing cystic fibrosis medicine Symdeko® will be listed on the PBS for patients with cystic fibrosis over the age of 12, who have specific gene mutations.
The current listing of Orkambi® will also be expanded for children aged 2-5 years of age, allowing earlier access to this life changing medicine.
Patients can gain access to Symdeko® and Orkambi® immediately, with the manufacturer agreeing to the Government’s request to provide early access, until the medicine is listed on the PBS on 1 December.
“The addition of these drugs will make a world of difference for people affected by cystic fibrosis. They will previously have paid up to $250,000 a year for Symdeko® or  Orkambi®, or gone without those drugs, but with the Morrison Government’s investment they will now only pay a maximum of $40.30 per script, with concessional people paying just $6.50,” Mr O’Brien said.
In Australia, one in 2,500 babies are born with cystic fibrosis, and there is currently no cure.
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. A defective gene causes a thick, sticky build-up of mucus in the lungs, pancreas, and other organs.
The average life expectancy for Australians with cystic fibrosis is 38, still less than half that of the average Australian.
“This is why it is so important to provide access to new medicines that can extend the lives of people with cystic fibrosis,” Mr O’Brien said.
The Pharmaceutical Benefits Advisory Committee (PBAC) recommended these medicines be listed on the PBS.
PBAC is independent of Government by law and in practice. By law, the Federal Government cannot list a new medicine without a positive recommendation from PBAC.
Since 2013, the Government has listed more than 2,200 new or amended items on the PBS.
This represents an average of around 30 listings per month – or one each day – at an overall cost of around $10.6 billion.
Mr O’Brien said the Coalition Government’s commitment to ensuring that all Australians can access affordable medicines remains “rock solid”.
“Our plan for a strong economy continues to deliver record funding for essential health services that saves lives and changes lives for everyday people across Australia.”
More information these new PBS listings:

  • Symdeko® will be made available through the PBS for the treatment of people with cystic fibrosis who have two copies of the f508del mutation in the CFTR gene, and are 12 years or older.                            
  • Symdeko will also be made available for people with cystic fibrosis who have only one copy of the f508del mutation, and have one other residual function mutation, and are 12 years or older.                  
  • The current listing of Orkambi®, used to treat people with cystic fibrosis who have two copies of the F508del mutation in the CFTR gene, will be expanded so that children can commence subsidised treatment from two years of age, instead of six years of age.



Media Contact:
For Mr O’Brien:  Clementine Norton (07) 4121 2936


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