They used to feel like the children Pharmac forgot. But April 1 was a landmark day for the cystic fibrosis (CF) community, with Pharmac now publicly funding the drug Trikafta for those with CF aged over six. The drug has been widely heralded for turning CF from a life-threatening condition – predominantly affecting the lungs and digestive system – to a manageable one. The Weekly catches up with three of the families affected.
Growing up, Josh Chase never allowed himself to dream about the future. Born with cystic fibrosis, the genetic lung disorder had clipped his wings and much of his childhood was spent in hospital.
“There was a time in my teens when I was being admitted into Starship [Children’s Hospital] almost once a month,” he shares. “I wasn’t looking after myself because it felt like too much effort if I was just going to die early. I thought, ‘If I’m only going to live till 30, then I’m just
