Cystic fibrosis sufferer spends $25k travelling to UK for life changing drug

Source: 1News

A Kiwi living with cystic fibrosis has spent her life savings in an attempt to lengthen her life expectancy. 

The condition affects the cells that produce mucus, sweat and digestive fluids, making it hard to go about a normal day. 

Kirsty Parsons is one of the few Kiwis travelling regularly overseas at the moment, having just arrived back into MIQ from the UK. 

She’s spending her life savings to do so and, as a cystic fibrosis sufferer, risking her life. 

The 27-year-old was living in the United Kingdom when she got picked to trial the drug Trikafta in 2018. 

 “Going to the supermarket, carrying groceries was really really tricky. I’d almost save up my entire day just to spend all my energy doing that job,” she told 1 NEWS. 

“Then with Trikafta, it was almost like getting picked up and put in a whole brand new body that was clean, sparkling and worked. Nothing wrong with it.”

Covid-19 forced her to move back to New Zealand but giving up the drug was out of the question. 

Since September last year, she’s gone back to the UK four times and has more planned, but other cystic fibrosis suffers haven’t been as lucky. 

For 20-year-old Angus Drumm, he’s been relying on what’s already subsidised. 

“It would be a remarkable drug if I could have it… If I could wave a magic wand and bring it for myself,” he said. 

“I tend to not think I am defined by my Cystic fibrosis but it’s still there, so for me, it’s about how it works within my life accepting the limitations it puts on me.”

The Government’s drug buying agency says it’s been speaking with the drug’s supplier Vertex and has encouraged it to make an application for funding but it’s yet to receive one. 

Despite Pharmac receiving $200 million in this year’s budget, those affected by cystic fibrosis say more money for Pharmac would help them. 

For Angus, the wait for Trikafta could be shortening his life expectancy. 

“You know, that’s a tough thing to grapple with is having a lower life expectancy that would improve my general health, it would enable so much more freedom. 

"That’s the crux of this, it’s the ability to do things you already otherwise would do.” 

He like many others are hopeful they can get their hands on the drug sooner than later.