Funding ivacaftor for rare cystic fibrosis mutation
In March, we added ivacaftor – a treatment for cystic fibrosis – to the Pharmaceutical Schedule following Medsafe’s approval.
We checked in with Bruno Cettina, a teen who had been living his best life thanks to the Pharmac-funded medicine. Despite being one of 35 New Zealanders with the rare cystic fibrosis mutation, Bruno’s mum Ana Waalkens told us he’s taking life with vigour.
“Without Pharmac’s funding of ivacaftor and support, Bruno would be in a whole different ball game”, says Ana.
Bruno used to be admitted to Starship Hospital about three times a year. Since starting ivacaftor in March 2020, Bruno
hasn’t been admitted to Starship at all.
His lung capacity, damaged by the cystic fibrosis, has responded well to ivacaftor, and his cystic fibrosis-related diabetes is more stable than it has ever been.
Around 85% of the Government's budget for pharmaceuticals is spent on medicines used by just 10% of New Zealanders.
“Bruno’s life and ours has improved significantly because of this medicine,” Ana told us. It has changed our outlook for the future, which we wouldn’t even have considered before.”
Ivacaftor is an expensive medicine, costing $383,225 at market pricing per person per year.
Around 85% of the Government’s budget for pharmaceuticals is spent on medicines used by just 10% of New Zealanders, like Bruno, each year.