Cystic fibrosis drug listed on PBS

Matt Woodley

21/10/2019 3:54:42 PM

While the announcement was welcomed, some have questioned the seven month delay between approval and listing.

Young girl with cystic fibrosis
Access to lumacaftor and ivacaftor will be expanded to include patients aged 2–5 years.

Patients with most common cystic fibrosis mutation (F508del) aged 12 years and older will be able to access the ‘life changing’ medication tezacaftor with ivacaftor (sold as Symdeko) from the Pharmaceutical Benefits Scheme (PBS) from 1 December.
Meanwhile, lumacaftor and ivacaftor (sold as Orkambi) will also be expanded to include patients aged 2–5 years.
Cystic Fibrosis Australia Chief Executive Nettie Burke described the new listing as an ‘amazing milestone’ and said it would add an estimated 20 years to recipients’ lives.
‘We believe that every Australian has the right to have a healthy life and a regular life and a long life, and drugs like Orkambi and Symdeko do just that,’ Ms Burke said.
‘You imagine, you’ve got a young child who might be starting school shortly. If they don’t have these types of drugs they can’t, because they will get sick, they’ll end up in hospital and their life will be shorter.
‘For adults, they can finish their education, they can get a job and work full time, they can get married, they can have babies, they can have sex, you know. It’s great, this is what these drugs give.’
The listing of tezacaftor with ivacaftor will save each patient up to $250,000 per year, with each script now $40.30, or $.6.50 for concession holders.
Federal Health Minister Greg Hunt said the listing is expected to provide new or improved treatment options for up to 1400 patients.
‘This is immensely important news for families. It is literally a breath of life for families and for patients,’ he said.
‘That means real hope, quality of life, extended life and an extraordinary outcome for wonderful cystic fibrosis patients and their families.’
However, Shadow Health Minister Chris Bowen has criticised the length of time it has taken to list tezacaftor with ivacaftor on the PBS, given it was recommended by the Pharmaceutical Benefits Advisory Council (PBAC) in March.
‘While we welcome this announcement today, and are relieved for the Cystic Fibrosis community, we point out that the minister spent seven months ignoring Australia’s pharmaceutical experts and Cystic Fibrosis patients,’ he said.
‘Instead of trying to cover himself with glory and self-congratulations for every listing, [Minister Hunt] should be getting on with the job now of listing the other 60 medicines that have been recommended by the PBAC and have not currently been listed.
‘The Pharmaceutical Benefits Scheme is an important safety need to ensure all Australians, regardless of their wealth, get access to the world’s best drugs. But it depends on the Minister making the listing as recommended by the PBAC.’
Last week Medicines Australia criticised the length of time it takes to list new medicines on the PBS due to what CEO Ms Elizabeth de Somer said is an overly bureaucratic approval process.
However, PBAC Chair Andrew Wilson told newsGP Australia’s approval times are comparable to other countries with similar health systems, while a source close to the PBAC told Fairfax the majority of listing delays relate to price negotiations between manufacturers and the Government.
newsGP requested a copy of the 60 medicines Mr Bowen said had been recommended by the PBAC but not listed, but did not receive a response prior to publication.

cystic fibrosis PBAC PBS Pharamceutical Benefits Advisory Council Pharmaceutical Benefits Scheme

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