5 December 2022
Yesterday was a day that we will remember forever - it was announced that PHARMAC and Vertex have reached a provisional agreement to fund Trikafta for people with cystic fibrosis aged six years and over who are eligible. We know there would have been lots of celebrating last night, but this news could take a while to sink in. But... Together, WE DID IT!
We'd like to say a heartfelt thank you to you, our community and supporters. For having the courage to share your personal stories, for elevating the campaign - a massive team effort is what got this over the line.
Cystic Fibrosis NZ Media Release:
CHRISTMAS MIRACLE FOR CYSTIC FIBROSIS COMMUNITY
Pharmac announces agreement to fund Trikafta for those aged 6 years and over.
After two and a half years of advocating for public funding of Trikafta[1] Cystic Fibrosis NZ is absolutely thrilled that Pharmac and Vertex have reached a provisional agreement to fund Trikafta for people with cystic fibrosis aged 6 years and over who are eligible.
Lisa Burns, Chief Executive for CFNZ says “There just aren’t the words to convey what this means for our community. Funding Trikafta will bring life-changing benefits to people with CF, their families, whānau, the wider community, and our health system.”
In August 2022, Pharmac acknowledged that Trikafta could give people with CF benefits equivalent to 27 more years at full health when compared to current supportive treatments, with real world data reinforcing that Trikafta reduces the risk of hospitalisations, lung transplants, and premature death. People with CF can now thrive and have a future where they live life on their own terms.
Lisa said “Today is a major milestone that will deliver access to a medicine which will prolong the lives of hundreds of Kiwis with CF. New Zealand will now join the more than 30 other countries where Trikafta is 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.”
Vertex applied to Pharmac in July 2021 to have Trikafta funded in New Zealand for people with CF aged 6 years and over. “The last 16 months has been a rollercoaster for our CF community… But this latest news means there is now light at the end of this tunnel,” said Lisa.
Wellington mum, Nicci Hughson whose 10 year old daughter Nora will be eligible for Trikafta once it’s funded said “We are totally overwhelmed by the news; we’d given up on thinking Trikafta would be funded in New Zealand in the next few years. Nora is ten, and we’d talked about the prospect of moving overseas to get access to Trikafta if it wasn’t funded by the time she turns 12. It’s a huge relief knowing that our little girl will have fewer chest infections, hospitalisations, less treatment, her sinuses could improve meaning she’ll get more sleep. Knowing she will live for longer, and feel better while she does that. Nora is old enough to know what CF is, she knows she’s different, and knows that without medication like Trikafta, she might not live as long as her friends.”
Cystic Fibrosis NZ wants to acknowledge the collective effort of the CF community for the extraordinary amount of commitment, and courage in sharing their very personal experiences with the public, Government, Pharmac and Vertex to help get this over the line.
“An incredible amount of resilience, aroha and mahi has gone into campaign. The news will be overwhelming, and it will take time for the reality to sink in about what it means for people with CF and their families, and the additional years they will now have ahead of them,” said Lisa.
“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. 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.”
[1] Trikafta is a medicine that treats the cause of cystic fibrosis for around 90% of those with the condition.
Sunday 4 December
- Newshub 6pm story here
- TVNZ 6pm story here
- Stuff article here
- NZ Herald article here
- Scoop - NZ Government Press Release here
Monday 5 December
- Newstalk ZB Early Edition interview with Lisa here
- RNZ Morning Report interview with Lisa here
- RNZ article here
- TVNZ Breakfast interview with Lisa, Jake and Pharmac here
- AM Show interview with Lizzie and Alex here
- NZ Herald article, Ed Lee and Lisa here
We will keep this list updated as more media rolls in!
