Whangarei teenager Logan Webb is pleased he'd be able to afford Trikafta to better his lifestyle. Photo / Michael Cunningham
Whangarei teenager Logan Webb is pleased he'd be able to afford Trikafta to better his lifestyle. Photo / Michael Cunningham
A provisional agreement to reimburse the cost of medication used to treat cystic fibrosis is slated to prolong Whangārei teenager Logan Webb’s life by 27 more years.
Pharmac intends to fund elexacaftor, tezacaftor and ivacaftor - sold under the brand names Trikafta and Kaftrio - for cystic fibrosis patients aged six and up from April 1 next year, pending public consultation. The provisional deal was struck with Vertex Pharmaceuticals.
Cystic fibrosis is an ultimately terminal condition that affects about 400 people nationwide and around 12 Northlanders. Specialists believe the average life expectancy of a person with cystic fibrosis is mid-to-late 30s.
Trikafta treats its underlying cause and has previously been described as a “miracle drug” by cystic fibrosis sufferers and their families, but it costs around $330,000 per person for a year in New Zealand.
Webb, 16, is pleased with the provisional agreement to fund Trikafta, and said the move would stop Northlanders leaving for countries where the drug is publicly funded.
The Whangārei Boys’ High School student has been using Kalydeco, which has been publicly funded for the past two years, and that has reduced his coughing.
He said early this year, a young cystic fibrosis patient in Northland had to move to the United Kingdom to access publicly-funded Trikafta.
Webb’s father Mike Webb said savings from the public funding of Trikafta would be massive in terms of hospitalisations and associated care. The results of taking Trikafta were instant— within half an hour patients felt better, he said.
“He’s been into Starship Hospital once when he was about 10. They had to scrape his lungs. He’s also had a couple of rounds of intravenous when he was younger. He’s lucky. Other people have spent weeks and weeks in hospital at times, every year.”
He said the biggest issue for people with cystic fibrosis was that they have trouble breaking down the mucus which builds up in their lungs and they can’t get it out.
“[It causes] a lot of chest infections, and then they have to spend a lot of time in hospital. It also affects the pancreas. They have to take pills which break down fat.”
Pharmac has reached a provisional agreement with Vertex Pharmaceuticals to reimburse the cost of Trikafta.
Mike Webb said Logan didn’t eat well. He has a feeding tube in his stomach. Every night, he plugs in and has a sachet of stuff that makes him grow, basically.
Apart from losing his appetite, he said Logan was unaffected in his day-to-day living. He’s in the Whangarei Boys’ High School 1st XI hockey team.
He has an older sister and brother, and neither have cystic fibrosis.
Cystic Fibrosis New Zealand chief executive Lisa Burns said real-world data reinforced the fact Trikafta reduced the risk of hospitalisations, lung transplants and premature death.
“People with CF can now thrive and have a future where they live life on their own terms. Our community no longer need to leave Aotearoa to access this medicine, and those who have already left can now come home to be with their families and whānau,” she said.
Vertex Australia and New Zealand senior country manager Sabrina Barbic said her company was pleased Pharmac has recognised that every eligible patient should have access to the drug and acknowledged the value Trikafta could bring, not only to people living with cystic fibrosis and their caregivers, but also to wider society.
On finalisation of the process, New Zealand will join more than 35 other countries - including Australia, Canada, Denmark, Finland, Spain, Germany, Austria, Slovenia, Croatia, France, Italy, and the United Kingdom - where Trikafta is broadly reimbursed for eligible CF patients.
