Cystic fibrosis relief 'WE NOW HAVE A FUTURE'

Finally funded in NZ, a new drug is tranforming the lives of three inspiring kiwis

- Fleur Guthrie

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 going to live my life how I like.’”

Now, having access to “wonder drug” Trikafta has changed all that and allowed the 29-year-old to start a new version of himself, unburdened and unlimited.

For several years, Josh, along with the CF community, had been rallying for it to be subsidised, after facing an annual price tag of $330,000 or the prospect of moving to one of 31 countries where it was publicly available.

When he and his mum Moninne found out that Trikafta was going to be funded here, she screamed. Then the tears flowed.

“I was speechless!” says Josh, a personal trainer from Whangaparāoa, north of Auckland. “There were too many emotions to put into words – including anger that it didn’t come through sooner – but overall, relief.