Photo: Cystic Fibrosis NZ
Cystic fibrosis drugs Trikafta and Alyftrek could become available for all children, regardless of age, with drug-buying agency Pharmac opening consultation on funding the two drugs.
Currently only funded for children aged six and over, Pharmac is consulting on making Trikafta available for all children with an eligible diagnosis, and fund a new treatment, Alyftrek.
It would also make the drug Kalydeco available for everyone with an eligible diagnosis.
If accepted, the proposal would effect from 1 April.
Pharmac said around 35 people were expected to benefit in the first year, increasing to 47 people after five years.
Associate Health Minister David Seymour, who holds minsterial responsibility for Pharmac, said the drugs were "lifechanging" for people living with cystic fibrosis, and their families.
"If approved, this proposal would give children access to these life changing treatments as soon as clinically appropriate. Cystic fibrosis can cause harm very early in life, so waiting to meet age-based eligibility criteria is not an option."
Seymour said the proposal had already received significant support from the cystic fibrosis community, and showed Pharmac's commitment to working with them.
"It is a great example of what is possible when Pharmac works alongside patients," he said.
'Life-changing'
The father of a toddler with cystic fibrosis is relieved he may soon get treatment which could potentially double his life expectancy.
Liam Rooney, his wife Courtenay and their 2-year-old son Luca were at the announcement in Auckland on Thursday with Seymour, Pharmac chair Paul Bennett and representatives from Cystic Fibrosis New Zealand.
"It's just life-changing for us knowing that Luca can have access within the next couple of months, once everything goes to plan," he said.
"It means he has every opportunity to thrive in life."
Some families - unable to afford the $330,000 to $400,000 a year for the drug - have previously moved to Australia, where it has been free for children from age two since 2023.
Australia's Pharmac equivalent, the Therapeutic Goods Administration, approved funding for Alyftrek in November, for patients aged six and older.
Trikafta has been funded for children aged over six in New Zealand since April 2023.
Since then, parents of children younger than six have lobbied for Pharmac to extend eligibility. It was added to Pharmac's Options for Investment List for two-to-five year olds late last year.
Pharmac's pharmaceuticals director Adrienne Martin said over 400 people had benefitted so far.
"Cystic fibrosis starts causing harm very early in life. Funding these medicines for all age groups would help more young children with Cystic fibrosis live longer, healthier lives," she said.
"Funding these treatments would also benefit the health system. People wouldn't need to visit the hospital as often and they'd need less treatment."
Consultation on the funding proposal closes on 11 February.
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