Cheaper treatment for children with cystic fibrosis

A “life changing” medication for cystic fibrosis will be extended to toddlers and preschoolers living with the condition, at a fraction of the price families would normally pay.

The drug Trikafta, which would cost $250,000 a year without subsidies, will be placed on the Pharmaceutical Benefits Scheme from Thursday for children aged two to five-years-old.

The medication had been previously listed on the PBS for those aged six and up with cystic fibrosis, but Health Minister Mark Butler said the extension would see an extra 330 families gain access to the subsidised treatment.

“It will allow families to get the benefits of Trikafta earlier than otherwise would be the case, instead of waiting till the child’s sixth birthday,” Mr Butler told reporters in Canberra on Monday.

“Because this disease is progressive, the earlier you’re able to get the life-changing impacts of this Trikafta drug, the better their lifelong chances are going to be.”

One baby is born every four days with cystic fibrosis and more than 3700 Australians had the inherited condition as of 2022, according to Cystic Fibrosis Australia.

It causes mucus in lungs and other organs becoming thick, leading to breathing issues, infections and damage.

The price of a prescription for the treatment will be capped at $31.60 or $7.70 for concession card holders.

Cystic Fibrosis Australia chief executive Jo Armstrong said the subsidy expansion would greatly benefit children with cystic fibrosis.

“Access to early intervention is critical for young children. We know that it does slow the disease progression and improves the trajectory so that, ultimately, children will have longer, healthier lives as a result,” she said.

“Today’s announcement means that it will be affordable for families, which is great news.”

Ashley Hayes, whose four-year-old son Heath lives with cystic fibrosis, said the PBS listing would make a difference.

“(The listing) means hope, hope that every time he coughs, we don’t need to worry ‘is two weeks hospital coming? Do we need to do more treatment?’” she said.

“Our family will sleep a lot better tonight. And we just can’t wait to keep planning the long life for Heath that we know he’s going to have.”

 

Andrew Brown and Rachael Ward
(Australian Associated Press)

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