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Pharmac Minister David Seymour said he hopes the drug-buying agency will make “the right decision” around funding a “miracle drug” used to treat cystic fibrosis. 

His comments follow news of a Lower Hutt family who made the “heartbreaking” decision to move to Australia earlier this year to get access to the medication before their 4-year-old daughter suffered irreversible harm from the illness. 

Adalyn Delaney was diagnosed with cystic fibrosis (CF) at birth and has had several surgeries to combat its effects, including one straight after being born. 

A medication treating the cause of CF is funded in New Zealand for people aged six and above, drug but remains out of reach for parents of children under 6, despite the importance of early treatment. 

Adalyn and her family moved to Queensland in June because the drug is funded over there for children her age. 

Speaking on Herald NOW this morning, Seymour said he had friends with CF and acknowledged it was a “terrible illness”. 

Pharmac Minister David Seymour has spoken about Trikafta. Photo / File 

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. 

“Trikafta is as close as you get to a miracle drug, it really is a major change,” Seymour told host Ryan Bridge. 

“It’s plummeted the amount of lung transplants done in New Zealand, which I think is a massive saving, but also not just for the taxpayer, but actually for the people who don’t have to go through that and can live normally,” he said. 

• Family's 'heartbreaking' call to leave NZ to get life-changing medicine for 4-year-old

Seymour noted when Trikafta was funded in New Zealand a few years ago, there was not yet safety consent for children under 6 to have it, which is why they were not included in the funding. 

“So as of March this year, Trikafta has been safety approved to be used in New Zealand. Subsequently, they have taken an application to Pharmac, Pharmac have gone through an initial assessment and said, yes, we think this should be funded as a priority, but they have a further meeting next month, where their experts will get together and make a choice.” 

Adalyn Delaney, 4, moved to Australia with her family, including 1-year-old Emily Delaney, to access Trikafta. 

Pharmac will assess the decision around whether to fund Trikafta for younger children, but this will also be weighed against other applications for different medications. 

“There are lots of things and lots of people that may not be in the news that they have to weigh up,” Seymour said. 

“That decision is independent. I will never interfere in Pharmac decision making - what I can do is argue for them to get more money. 

“I certainly hope that they’ll make the right decision for Trikafta.” 

Seymour said they would not give Pharmac money for specific medications to be funded because that would break “the whole model”, but in the Budget coming up next May he said he would go to Finance Minister Nicola Willis and argue for more money for medicines to “make people’s lives better”. 

Adalyn Delaney calls Trikafta her "special pill". 

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 earlier 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. 

For mum Kayla Delaney, the news her newborn baby Adalyn had CF was “devastating”, particularly given some earlier New Zealand estimates put the average life expectancy for CF sufferers at 31 years. 

Alex and Kayla Delaney moved their two daughters, Adalyn, 4, and Emily, 1, to Australia to access the drug for Adalyn. 

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 disappointing it was “taking so long” for the drug to be funded for young children in New Zealand. 

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. 

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. 

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.