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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.
NZ Herald
