Parents of children with cystic fibrosis will no longer have to pay $250,000-a-year to keep their children healthy, with treatment Orkambi recommended for government subsidy.
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Late Friday, the Pharmaceutical Benefits Advisory Committee recommended the drug be listed on the Pharmaceutical Benefits Scheme, with Health Minister Greg Hunt confirming the government would fund all drugs recommenced.
Albury mum Kyleen Marheine has two children with cystic fibrosis, Carissa, 18, and Connor, 16.
“It gives the majority of the cystic fibrosis population a better chance at having a healthier life,” she said.
“Unless you’re a multi-millionaire I don’t think you could afford it.
“You’d find a way for your child but you’d definitely have to go without a lot, the average person couldn’t afford it.”
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Both her children have a different mutation on the CFTCR gene so would not need Orkambi, instead being treated with Ivacaftor which is made by the same company.
The majority of people with cystic fibrosis – which affects the lungs, digestive system and shortens lifespans – have the mutation Orkambi treats.
It was drug-creator Vertex’s fourth attempt at getting Orkambi recommended for the PBS, with three previous attempts failing as the company and the PBAC were unable to agree on price.
Cystic fibrosis organisations feared Vertex would pull Orkambi from the Australian market if they were not successful a fourth time.
Kylee’s daughter Carissa said after being on Ivacaftor her life has improved drastically and she was pleased other people with cystic fibrosis would be able to get the same level of treatment.
“This means people who didn’t have enough money can now go out and access treatment,” she said.
“They can start taking it and hopefully it boosts their health dramatically.”
Ms Marheine said since her children started taking Ivacoftor they’d been able to be more active socially, spent less time in and out of hospital and become more confident.
She said it was disappointing it took four attempts for Orkambi to be recommended for the PBS as for some people it meant years without the drug.
“It’s really sad because I know how much of a difference Ivacaftor had for my children,” she said.
“Hopefully [Orkambi] will make people healthier and then they’ve got a better chance at a future.”
Carissa said the amount of time it took to put Orkambi on the PBS was not fair, especially as it was out of the control of people living with cystic fibrosis.
“It’s disappointing it took this long to make a simple decision,” she said.
“But I’m still very pleased!”
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