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Newcastle Herald
Newcastle Herald
Health
Anita Beaumont

Well played: Cause for celebration as cystic fibrosis drug added to the PBS

HUNTER musician Mark Wells is celebrating the news that a "game-changing" new drug for people with cystic fibrosis (CF) will be added to the Pharmaceutical Benefits Scheme (PBS) within days.

Mr Wells, who has CF, thanked everyone who signed a parliamentary petition calling to make "Trikafta" more accessible and affordable for Australians living with the condition.

Without PBS subsidy, around 1,900 Australians would be up for more than $250,000 a year to access the drug.

Mr Wells had previously told the Newcastle Herald that he had accessed the drug via a clinical trial and it had changed his life.

He called Trikafta a "bonafide" game-changer, which was why he advocated for the drug to be added to the PBS.

Mr Wells, 40, said it had allowed his lungs to function a "hell of a lot closer to normal", and had kept him out of hospital. This year, he had been able to complete his first triathlon - an achievement he never thought possible because of the condition.

Mr Wells said he had not been expected to live beyond his teens when he was diagnosed with CF. But progressions in the research and development of treatments and medications had gradually improved in that time.

"I'm in disbelief and over the moon because I know this means that overnight thousands of lives will be changed," he said in a Facebook post this week.

"Now the idea of living a long, full and happy life with CF is no longer preposterous - it will just be normal - very different to 1981.

"A miracle of modern science driven by the persistent work of some very clever people, and the hopes of everyone affected by CF. Unbelievable stuff."

The federal Health Minister Greg Hunt announced on Sunday that Vertex's triple combination therapy for CF, Trikafta - elexacaftor/tezacaftor/ivacaftor and ivacaftor - would be listed on the PBS for Australian patients aged 12 years and older from April 1.

Minister Hunt said the treatment was out of reach for most Australians, but now that it would be available on the PBS, eligible CF patients would only pay a maximum of $42.50 per script, or as little as $6.80 with a concession card.

Sabrina Barbic, of Vertex Pharmaceuticals Australia, said it was a "great day" for Australian cystic fibrosis patients and their families.

"We are delighted that Vertex's triple combination cystic fibrosis therapy, Trikafta, will be listed on the PBS for more than 2,200 eligible patients aged 12 years and older," she said.

"Thanks to the federal government, Australia now joins other countries around the world to publicly fund this critical therapy for cystic fibrosis patients.

"Vertex has dedicated more than 20 years to cystic fibrosis research and for many in the company, their life's work has been trying to find a cure. While Trikafta acts on the most common genetic mutation, which affects 90 per cent of CF patients, we won't stop working until all patients with CF have access to transformative medicines, regardless of genetic mutation or age."

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