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Life-extending cystic fibrosis drug Trikafta made available on PBS to children aged six and over

Posted Thu 6 Apr 2023 at 5:13amThursday 6 Apr 2023 at 5:13am, updated Thu 6 Apr 2023 at 10:57pm

Mum Jaimee Sewell felt "huge relief" when she learnt her four-year-old daughter Mila would soon have affordable access to a key medication for cystic fibrosis, prolonging her life expectancy.

"It just means that we have the confidence that it will be available the moment she turns of age and all the contingency plans that we had in place to get it for her, we now don't have to worry about it," she said.

"She'll still have cystic fibrosis, but it means that it shouldn't affect her life as severely as the previous generation."

Cystic Fibrosis Australia describes Trikafta as a "game changing" treatment for those with the condition.

It was added to the pharmaceutical benefits scheme (PBS) for those aged over 11 in April last year.

In November, the Pharmaceutical Benefits Advisory Committee (PBAC) recommended dropping the age patients could access the subsidised treatment to six years of age.

After months of advocating on the issue, this morning families like Ms Sewell's learnt that from the May 1, the drug will be added to the PBS for eligible children aged six and over.

It means four-year-old Mila can access it when she turns six and starts prep next year.

"She will most likely not ever need a lung transplant, and it'll mean that she can grow old with the confidence that her CF won't really get in the way too much," Ms Sewell said.

Jaimee says having affordable access to medication Trikafta will be life-changing for Mila when she turns six.(ABC Capricornia: Katrina Beavan)

'The best news'

Cystic Fibrosis Australia chief executive Jo Armstrong said without a subsidy the treatment would cost families about $22,000 a month.

She said the medication, from pharmaceutical company Vertex, was a triple-combination therapy, described as "the closest thing to a cure" for people with the condition.

"The whole cystic fibrosis community can celebrate — 500 Aussie kids will have access to Trikafta from May 1," Ms Armstrong said.

"It really is just the best news, [it's why] we've been campaigning all year."

In a media release, federal Health Minister Mark Butler confirmed that on the PBS, the drug would cost a maximum of $30 per script, or $7.30 with a concession card.

"The estimated median survival of a person with cystic fibrosis in Australia is 47 years. Now, treatments like Trikafta are likely to extend life expectancy and improve quality of life for people with cystic fibrosis," Mr Butler read.

However, Ms Armstrong said not everyone would be eligible for the medication and not every patient would respond to it.

"This is why it's important that there's other therapies and our campaigning will continue for those people to ensure that everyone can have access to the therapies they need, and to have a full healthy life."


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