Australians with cystic fibrosis benefit from life changing expanded listing

More Australians living with cystic fibrosis (CF) will have affordable access to a life changing treatment option under the Pharmaceutical Benefits Scheme (PBS) from 1 July 2025.

The Hon Mark Butler MP
Minister for Health and Ageing
Minister for Disability and the National Disability Insurance Scheme

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General public

More Australians living with cystic fibrosis (CF) will have affordable access to a life changing treatment option under the Pharmaceutical Benefits Scheme (PBS) from 1 July 2025.
 
The PBS listing for Trikafta® (elexacaftor/tezacaftor/ivacaftor and ivacaftor) will be expanded to include CF patients who have at least one CF transmembrane conductance regulator (CFTR) gene mutation that is responsive to treatment.
 
As a result, patients, including children, diagnosed with rarer mutations of CF will now be able to access Trikafta through the PBS.
 
Around 180 Australians each year are expected to benefit from this expansion to Trikafta’s PBS listing. Without the PBS subsidy, they could pay more than $250,000 for a year of treatment.
 
Trikafta was first listed on the PBS by the Australian Government in April 2022 for patients aged 12 years and older who have specific gene mutations. The 1 July change will be the third expansion to the listing.
 
Through the PBS they will pay a maximum of $31.60 per script, or just $7.70 if they hold a concession card. The price will be even cheaper from 1 January 2026 when the maximum patients pay for PBS medicines will drop to just $25 per script.
 
CF is an incurable genetic disease which causes an abnormal amount of thick and sticky mucous in the lungs, digestive and other systems. Over time, this can cause irreversible damage to lungs and other organs.
 
Trikafta and other similar drugs, together with improved treatment and care, have increased the life expectancy for people with CF from 47 to 60 years in the past two decades.
 
Since July 2022, the Australian Government has approved funding for 339 new and amended listings on the PBS.
 
Quotes attributable to Minister Butler:
 
“This expansion to Trikafta’s PBS listing is great news for hundreds of Australians who live with rare mutations of CF, including children, and their families.
 
“It will give them access to a more effective treatment which until now would have cost $250,000 a year – an impossible price for most people.
 
“The government subsidy applied through the PBS will reduce the cost to as little as $7.70 per script for concessional patients.
 
“As a result, these people will be able to lead longer and better-quality lives.”
 
Quotes attributable to Jo Armstrong, CEO Cystic Fibrosis Australia:
 
“As the national peak body for cystic fibrosis, Cystic Fibrosis Australia is proud to see our voices being heard as our country takes a bold step forward in expanding access to Trikafta.
 
"This decision places Australia as a global leader for equitable access to CF therapies, a position made possible by the government’s pragmatic approach to real-world data, in vitro studies, and clinical evidence.
 
“This decision means that hundreds of Australians living with Cystic Fibrosis will now have access to a therapy that was previously out of reach, a treatment that can dramatically improve quality of life and life expectancy.
 
“For those who’ve waited, hoped, and campaigned, this is more than a policy decision, it’s a transformational outcome."

 

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