Lockie’s dad Frazer Jones said they were absolutely ecstatic about the news.
“For a young guy, he’s had a lot of stuff thrown at him.”
He said his wife Anna Scoullar-Jones also would have been elated by the news.
“She passed away four years ago quite suddenly so that was something we also had to deal with.”
Jones said his wife was a huge advocate for people with cystic fibrosis, and the chair of the Central Districts branch of Cystic Fibrosis New Zealand (CFNZ).
“Anna fought for this for a long time and was incredibly proactive. This is what she fought for,” he said.
“Lochie was born with CF, and when he wasn’t feeding properly for 12 hours they shipped us off to Wellington and after they ran some tests that’s when our journey began.”
Jones said managing the condition was quite the regime.
“There are many hospital visits and antibiotics courses, sometimes involving two weeks of IV antibiotics where he has to stay in a hospital room for two weeks at a time.”
He said Lochie, now 22, had strong lung functions compared to many others with cystic fibrosis.
“We know the rollout [of Trikafta] is in April but we’re not quite sure what it all entails yet.”
CFNZ Central North Island community support lead Beverley Darlow said the drug meant decades more good health for Lochie.
“It’ll improve his lung function, digestive system and quality of life,” she said.
Darlow said the funding news had been a long time coming.
“Many families have tried really hard to get funding for Trikafta and have been rejected, so this is amazing news,” Darlow said.
“I’m a social worker, so you’re usually dealing with the sadder aspects of things and for now things are a lot more positive.
“Now I can support more people to get jobs and to study, so we have many more things to focus on other than just getting through the next hospital visit.”
She said she works with over 100 families through her work.
“Now many of them can look forward to the future.”
Darlow said in the past she had worked with families who moved overseas to places where Trikafta was already funded.
“Especially to Australia, but there’s still a waiting game for them.”
CFNZ has been advocating for public funding of Trikafta for two and a half years, CFNZ chief executive Lisa Burns said.
“There just aren’t the words to convey what this means for our community,” Burns said.
“Funding Trikafta will bring life-changing benefits to people with CF, their families, whānau, the wider community, and our health system,” Burns said.
She said New Zealand was joining over 30 other countries where Trikafta was funded.
“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.”
Burns said the news would be overwhelming and would take time for the reality to sink in about what it means for people with cystic fibrosis and their families, and the additional years they will now have ahead of them.
“Trikafta should now be the trailblazer to show how modern medicines like this can be funded in New Zealand. We cannot forget those who are still desperately waiting for life-saving medicines,” she said.
“We need to urgently work towards a framework that delivers a fair and equitable system where funding medicines is seen as an investment rather than a cost.
“CFNZ and our CF community have held on tight to the hope that one day this would happen and now we have the Christmas miracle we hoped for.”
Cystic fibrosis is an ultimately terminal condition that affects about 540 people in New Zealand in which the glands that produce mucus, sweat and intestinal secretions do not function properly.
The condition causes thick mucus to accumulate in the lungs, leading to breathing difficulties and infections.
Trikafta is a cystic fibrosis transmembrane conductance regulator (CFTR) modulator that helps defective CFTR proteins work more effectively.
