A Lower Hutt family have had to move to Australia to access a life-changing cystic fibrosis (CF) medication for their 4-year-old daughter and prevent further irreversible damage to her small body.
Trikafta, described by one user as “the most incredible medical breakthrough that we’ve had for cystic fibrosis”, is not a cure for the condition, but treats the cause instead of symptoms and is estimated to extend users’ life expectancies by decades.
Pharmac told the Herald it was assessing an application to fund the drug for children aged 2 to 6, but didn’t know yet when or if a decision would be made to do so. The previously reported unfunded cost of Trikafta per person in New Zealand was about $330,000, excluding GST, per year.
CF is a genetic condition that causes the body to produce a thick, sticky mucus, causing obstructions primarily in the lungs and pancreas. Those with the condition are more susceptible to lung damage and infections, and issues with their digestive system.
For mum Kayla Delaney, the news her newborn baby had CF was “devastating”, particularly given some earlier New Zealand estimates put the average life expectancy for CF sufferers at 31 years.
Adalyn Delaney was suffering the effects of CF before she was even born, with health staff discovering during a scan that she had a bowel obstruction. The moment she was born, she had to be rushed away to surgery.
Adalyn had to have two surgeries within her first five weeks of life, and another at the age of 1 to get scar tissue removed. She has been hospitalised multiple times, including for pneumonia, a collapsed lung and another bowel obstruction.
She has to go on a nebuliser (a mask-like device that turns medicine into a vapour she can inhale) three times a day when she is healthy, and must take medication when she eats to help her body digest food properly. Before going on Trikafta, she went on antibiotics every time she got a cough.
Since getting to Queensland in June, Adalyn was quickly prescribed Trikafta and has been on what she calls her “special pill” now for several weeks. While it is still early days, the medication appears to be working well so far, with Adalyn experiencing a spike in energy and hunger, and a lack of tummy aches.
Delaney said it was “really heartbreaking” to leave behind their support networks, friends and family, but they had to make the decision for Adalyn’s health.
“Children don’t want to be strapped to nebulisers, they want to be playing and all that.”
Delaney said it was disappointing it was “taking so long” for the drug to be funded for young children in New Zealand.
“It’s definitely a condition that affects things from birth ... the sooner the better that children can go on it for better long-term outcomes.”
The family have thought about whether they would move home once Adalyn turns 6, but Delaney said Australia was funding more medications that may have a better impact on Adalyn.
“We want NZ to keep pace with treatments, not just catch up. We need to be where she’ll get the best care.”
The chief executive of Cystic Fibrosis New Zealand, Lisa Burns, said New Zealand was “just so far behind” other countries in providing Trikafta to children.
Children were suffering irreversible damage to their bodies before the age of 6, she said.
To the best of her knowledge, about 55 children in New Zealand would benefit from the drug being funded for them.
She noted Pharmac’s Pharmacology and Therapeutics Advisory Committee previously said Trikafta could add 27 years to someone’s life. While previous estimates have put the average life expectancy in the 30s, updated figures in Australia, where more medications have been funded for longer, are closer to the mid-50s.
“When children are normally learning to walk and explore, these kids aren’t. They’re going through hours of treatment regimes and having to spend time in hospital, and they don’t get to have the same opportunities, and this medication could drastically help to improve that in this age group. It’s so important,” she said.
“My message to Pharmac is please recognise the value that is being delivered from the patient population ... we want to see equitable, accessible treatment for our children.
“I just don’t understand why we wouldn’t do it, this can change the trajectory of their lives.”
Hanna Meates, 33, went on Trikafta a couple of years ago when Pharmac began funding it for people over 6.
“Everybody should be able to have access to something like that if it’s going to literally save their life ... like, they can avoid all the lung damage and all of that stuff that’s irreversible,” the Lower Hutt woman said.
It was an opportunity for them “to have a normal life right off the bat”.
“I think something like Trikafta is the most incredible medical breakthrough that we’ve had for cystic fibrosis.”
Meates had never expected to have a long life, and upon starting Trikafta, her emotions were “quite indescribable”.
“For the first time, I actually had a future to look forward to and a future that I could plan for and know that I was going to have that and be healthy for at least most of it.
“It was amazing but also scary in a way as well, because like, you grow up and you’re told that ... you’re not probably going to have a long life. So you live your life like that.
“I didn’t plan for anything. I don’t have savings or anything. I didn’t care about what was going to happen, so I was just living in the moment, and then suddenly you do have a future and then you have to start thinking about savings and what you’re going to do for your future.”
Meates said her symptoms were significantly reduced on Trikafta. She still experiences more shortness of breath than the average person and can get quite tired, but aside from that and a persistent cough, she otherwise feels healthy.
“You’re one way your whole life and you don’t really know what you’re missing out on, and then suddenly your life just completely changes.”
Before Trikafta, she couldn’t exercise or hold down a full-time job, or even go for a light walk without running out of breath.
Now she can go to the gym and live life relatively normally, and has a full-time job as an adviser in a government department.
“It was literally life-changing,” she said.
Pharmac’s director of advice and assessment, Dr David Hughes, said when they funded Trikafta for people over 6 in April 2023, Trikafta only had approval for that age group at the time.
“The company obtained Medsafe approval for Trikafta for children aged 2 to 5 years in March 2025, after supplying clinical trial data for this age group,” he said in a statement.
A year ago, a respiratory advisory committee recommended Pharmac fund it with a high priority for people aged 2-6 who met certain criteria.
“Our teams are working hard to finish our assessment of this application, which is well under way. Once our assessment is complete, we will then compare this application against applications for other medicines that people would like us to fund on the Options for Investment list.
“We can’t say if or when a decision about funding this medicine will be made. It depends on things like the budget we have available, the success of negotiations with suppliers, and how we’ve prioritised this medicine against others.”
In a statement, Vertex, which makes Trikafta, said more than 40 countries, including those with a similar funding system to New Zealand, were funding the drug.
“Vertex is keen to explore innovative funding solutions with Pharmac so that eligible children ages 2-5 years can have sustainable access to Trikafta as soon as possible.”
Melissa Nightingale is a Wellington-based reporter who covers crime, justice and news in the capital. She joined the Herald in 2016 and has worked as a journalist for 10 years.