Life changing medicine for children with cystic fibrosis

Australian children with cystic fibrosis now have access to cheaper medicines earlier under the Pharmaceutical Benefits Scheme (PBS) thanks to the Australian Government.

The Hon Mark Butler MP
Minister for Health and Aged Care

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Australian children with cystic fibrosis now have access to cheaper medicines earlier under the Pharmaceutical Benefits Scheme (PBS) thanks to the Australian Government.

Trikafta® (elexacaftor/tezacaftor/ivacaftor and ivacaftor) will be expanded to include children aged 2 to 5 years with cystic fibrosis who have at least one F508del mutation on the cystic fibrosis transmembrane conductance regulator (CFTR) gene, the most common CF-causing mutation worldwide.
 
In Australia, a baby is born with cystic fibrosis every four days.
 
Cystic fibrosis is an inherited disease where mucus in the lungs (and other organs) becomes very thick and sticky. Over time, this can cause persistent lung infections, limited ability to breathe and often, irreversible lung damage.
 
Trikafta was first expanded by the Albanese Government to treat children aged 6 to 11 years on 1 May 2023. The inclusion of 2- to 5-year-olds will provide for earlier access to this life changing treatment for children living with cystic fibrosis.
 
This listing is expected to benefit an additional 330 children each year.
 
Without subsidy, Trikafta might cost families more than $250,000 per year.
 
On the PBS, they will pay no more than $31.60 per prescription, or $7.70 if they have a concession card.
 
Quotes attributable to Minister Butler:
 
“Trikafta is a life changing drug for children living with cystic fibrosis.
 
“This treatment was far too expensive for most families to contemplate.
 
“Now, thanks to our world-leading PBS system, families with a diagnosis of CF can literally breathe easier.
 
“For kids who reap the full benefit of these treatments, they will be able to live and play, and plan for long, happy lives, just like their friends who weren’t born with a faulty gene.
 
“I want to acknowledge all those parents and families that have campaigned and called for this. Your advocacy and your voices have been heard, loud and clear.”
 
Quotes attributable to Jo Armstrong, CEO, Cystic Fibrosis Australia:
 
“The CF community has been campaigning tirelessly for Trikafta to be made available and subsidised for younger kids, so that the families can afford it.
 
"Today we have the great news that the life changing medication Trikafta will be made available from 1 August for children aged 2 to 5.
 
"A huge thank you to Minister Butler and the Department of Health, and Vertex Pharmaceuticals for making this available.
 
"As a community we can celebrate: our voices have been heard and another 330 Aussie kids will now have the opportunity to live healthier, longer lives. It's not a cure, but it's a great step in the right direction.”

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