Tania Camplin, left, and Claire Fisher, advocates with relatives who have Cystic Fibrosis celebrating the announcement that Pharmac is going to be funding the live-changing treatment, Trikafta. Photo / Warren Buckland
Tania Camplin, left, and Claire Fisher, advocates with relatives who have Cystic Fibrosis celebrating the announcement that Pharmac is going to be funding the live-changing treatment, Trikafta. Photo / Warren Buckland
Hastings man Joe Voyce has experienced firsthand how life-changing Trikafta is for people with Cystic Fibrosis and he is stoked to know many others will now enjoy the same improvements to their lives too.
Pharmac officially confirmed their proposal to fund elexacaftor with tezacaftor and ivacaftor, also known as Trikafta,on Sunday evening.
From 1 April 2023, people with Cystic Fibrosis will have funded access to Trikafta if they are aged six years or older, have specific mutations, and meet clinical criteria according to the announcement on Sunday evening.
Pharmac estimates that the treatment could give people with the condition up to 27 more years of full health, compared to supportive care.
31-year-old Voyce has been receiving Trikafta through managed treatment on compassionate medical grounds with Vertex Pharmaceuticals for about three weeks before the Pharmac approval and he has already had significant improvements to his quality of life.
“It’s nice to know that there are a lot of kids that won’t have to go through a lot of the things that us older guys with CF have had to go through,” Voyce said.
“Three weeks ago, my real life started. Breathing isn’t a problem, I don’t cough. I can think about other things, instead of worrying about my health, now I can just focus on not wasting the extra time I’ve got, just using it and living my life,” he said.
He has been able to return to completing household tasks without getting puffed and working out at the gym after work.
His sister Tania Camplin said Voyce had reached the point where if he had one more infection, then he may not have been able to recover before the treatment.
Hastings man Joe Voyce has experienced firsthand how life-changing Trikafta is for people with cystic fibrosis. Photo Supplied
“We couldn’t have ever expected that it would work in the way it has done.”
Claire Fisher, secretary of the Hawkes Bay Branch of Cystic Fibrosis NZ, said she had been fighting for funding since her 16-year-old daughter Amber, was born with Cystic Fibrosis and she was “shocked” in a good way to hear the news.
“It has been a long battle to get Trikafta funded in New Zealand but until last night, we thought it would take much longer.”
She said she was thinking of people whose loved ones are no longer around to benefit as well.
“Cystic Fibrosis families all over NZ are incredibly emotional today, as we process the knowledge that our community has finally won.”
She said she was hopeful that the proposed funding would be a start to addressing the country’s lack of access to modern medicines.
“Pharmac’s criteria has to change, they have to be able to take into consideration the wider benefits of funding modern medication,” she said.
“My understanding is that funding Trikafta will ultimately save our country money and it will certainly benefit our mental health system, as well as have the obvious benefits to the physical health of people with Cystic Fibrosis.”
Pharmac estimates more than 360 people in New Zealand would be eligible under the proposed criteria.
There are about 500 people with Cystic Fibrosis in New Zealand.
Consultation on the funding has opened and will close at 5 pm, Monday 16 January 2023.
