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Thousands of people with cystic fibrosis are one step closer to accessing a ‘lifesaving’ drug, after it was recommended for inclusion on the Pharmaceutical Benefits Scheme (PBS).
The medication Trikafta has been credited with helping people with cystic fibrosis avoid lung transplants and live longer lives.
But, at a cost of about $300,000 a year, the drug is out of reach for most patients.
The Pharmaceutical Benefits Advisory Committee (PBAC) has now recommended Trikafta be added to the PBS for people aged over 12 with cystic fibrosis, in a decision published last Friday.
Adelaide woman Genevieve Handley, who has cystic fibrosis, has been campaigning for Trikafta to be added to PBS, with a parliamentary petition she started last year attracting 35,000 signatures.
Ms Handley said the PBAC decision was good news for the 2200 people waiting to access the drug.
“There’s been widespread celebration as we’re now much closer to accessing Trikafta,” Ms Handley said.
However, there were still some hurdles to get through before the drug was added to the PBS, including price negotiations between drug company Vertex Pharmaceuticals and the Federal Government, Ms Handley said.
A spokesperson for Vertex Pharmaceuticals said the company also welcomed the PBAC decision, but hinted price negotiations could become a stumbling block.
“We are pleased the PBAC has now recognised that all eligible CF patients should have access to Trikafta,” the spokesperson said.
“However, it is disappointing that despite providing recent additional clinical data that supports the long-term effect of Trikafta and applying health economics methodology consistent with prior PBAC advice, the outcome has come at the expense of recognising the value of the medicine and its impact on patients.”
There are 3500 Australians living with cystic fibrosis, the country’s most common genetic disease.
The condition causes mucus to build up in the lungs and airways, leading to irreversible lung damage.
Around half of those with cystic fibrosis currently pass away by the age of 30.
Matt Dickinson, from South Australia, is one patient whose family say he would benefit immensely from Trikafta being added to the PBS.
Matt, who also has autism as well as cystic fibrosis, spent the five out of eight weeks in hospital, including his birthday.
Matt’s mother Cassandra Day said Trikafta would give her son his life back.
“We are beyond excited and grateful to have received the news that Trikafta has finally been ‘recommended’ to be listed on the PBS,” she said.
Ms Day said she hoped both Vertex Pharmaceuticals and the Federal Government would move swiftly to add the drug to the PBS.