
Former Wallaby Nathan Charles lives with cystic fibrosis (photo courtesy The Australian)
Government to Cover Cost of $250,000 Life-Saving Drug for Australians with Cystic Fibrosis
The federal government will now foot the bill for a cystic fibrosis treatment that would otherwise cost patients up to $250,000 a year, bringing life-saving access within reach for hundreds of Australians from 1 July.
The breakthrough drug Trikafta, described as a “wonder drug” by doctors and patients alike, will be listed on the Pharmaceutical Benefits Scheme (PBS) for people with rare and ultra-rare cystic fibrosis gene mutations. Under the listing, patients will pay just $7.70 with a concession card or $31 (dropping to $25 in January) without one. The remaining cost — hundreds of thousands of dollars annually per person — will be covered by the government.
Health and NDIS Minister Mark Butler said more than 90% of Australians with cystic fibrosis will now have affordable access to the therapy. “We’re talking about transforming and extending lives — sometimes within days,” he said.
Cystic Fibrosis Australia CEO Jo Armstrong called the announcement a “huge win” after years of advocacy. “Many people never imagined they’d live to see this day. Today, hope has become reality,” she said.
The decision places Australia among the global leaders in equitable access to cystic fibrosis care — not only for those with common gene types, but also for patients with rare variants who were previously excluded from treatment.
Former Wallaby Nathan Charles, who has cystic fibrosis, described the expansion as a “second chance at life.” During a short trial, his lung function jumped 13% in two days. “The only thing that stopped me from accessing it was the cost. That changes today.”
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Trikafta’s Impact: ‘Like a Magic Trick’
Behind the policy is a deeply personal transformation. Dr Claire Wainwright, a paediatric respiratory physician and clinical trial leader, explained the science behind Trikafta: it helps correct the protein dysfunction at the heart of cystic fibrosis. “It’s like a magic trick — the drug recovers the defective protein and helps it function properly,” she said.
The earlier the drug is administered, the more powerful the impact. For children, it can preserve pancreatic function — preventing the need for up to 30 enzyme tablets a day. For adults, it radically improves quality of life and potentially adds decades. “We’re talking about extending life by 20 to 30 years,” Wainwright said.
The announcement means Australia now offers one of the most inclusive access pathways to Trikafta globally, thanks to the Therapeutic Goods Administration, the Pharmaceutical Benefits Advisory Committee, and health department officials who moved decisively on emerging evidence. That evidence included real-world data showing benefits for patients outside the original clinical trial population.
Minister Butler emphasised that the government’s approach to PBS listings is driven by expert advice and evolving science. “When evidence emerges that a new group can benefit, we act,” he said.
However, not all news from the Minister’s press conference was welcome. When pressed on the controversial NDIS pricing cuts for allied health, Butler defended the reforms, citing broader market benchmarking. “We want to make sure that NDIS participants are not paying above the odds,” he said.
Many allied health professionals remain unconvinced of this. They warn these cuts will reduce access to complex care.