Trikafta is a paradigm-shifting, breakthrough treatment widely heralded as having the potential to turn cystic fibrosis from a life-threatening condition, to a manageable condition. It's currently not funded in New Zealand. Help us campaign for this treatment - Kiwis with CF simply can't wait any longer.
Pharmac’s assessment of Trikafta clearly demonstrates it would bring lifechanging benefits to Kiwis with CF by substantially improving their quality of life and life expectancy and enabling them to live almost normal lives. Trikafta would also deliver major benefits to the NZ health system, through significant reductions in medical treatment, hospitalisations, and lung transplants.
Real world data recently published by Vertex covering more than 16,000 CF patients in the US reinforces Trikafta’s effectiveness, and the life-changing benefits it could bring to Kiwis with CF*:
• 84% reduction in the risk of lung transplant
• 77% fewer pulmonary exacerbations (serious lung infections)
• 74% reduction in the risk of death
• no reduction in lung function after 96 weeks (almost 2 years) on Trikafta.
The high priority recommendation from Pharmac’s clinical advisors, the positive economic assessment and the compelling evidence of benefit, mean that Trikafta needs to be funded as soon as possible. CFNZ urges Pharmac to engage with Vertex to agree a fair and reasonable price for Trikafta
CFNZ urges Government to make funding available to Pharmac to ensure everyone in New Zealand who would benefit has access to Trikafta. Kiwis with CF deserve a future to look forward to.
*View source in Key Messages pdf below.Download a PDF of the Key Messages
“Seven weeks ago, my life was pretty different. My lungs were only functioning at 22%, I was on oxygen 24/7, and I couldn’t walk to the letterbox. I could barely keep enough weight on to be considered for transplant.”
“Then I got a phone call from my CF nurse. She told me I had been approved for the Managed Access Programme for Trikafta. Two days later I took my first dose. By day three I no longer required oxygen and my appetite was coming back. After two weeks, I had the energy to enjoy life again. And that’s just the start.”
Read Ashley's full story here >
Pharmac’s respiratory experts concluded that Trikafta could:
Last week we (virtually) sat down with a young adult with CF and his Mum, to chat about his experience on Trikafta. As you'll read, this story is a little different from those we've shared in the last year. While he maintains a good lung function, Trikafta is treating his severe pancreatitis. And the impact it has had is life changing.
Read his story here >
Trikafta for Kiwis had a petition calling for public funding of Trikafta for all eligible Kiwis with cystic fibrosis.
The petition closed on 28 February 2022, with an amazing 43,234 signatures.
We will keep you updated on social media with the details of when and where the petition will be presented.
A huge thank you to everyone who signed and shared the petition.
View the petition for Trikafta
Try to get your personal story in the local media. Coverage in local media can help to raise awareness that CF is something that can happen to anyone.
To help with information and background on CF and Trikafta for local media, you can use the key messages. Make clear that Kiwis with CF can’t wait any longer for Trikafta.
Many people have already posted their stories on social media and we thank them for doing so. Now we need as many people as possible to share their stories – and make clear that Kiwis with CF can’t wait any longer for Trikafta.
While the primary focus of this campaign is to get Trikafta funded, CFNZ’s goal is to ensure that everyone with CF who would benefit has access to a CF modulator therapy. This includes seeking to widen the existing criteria for access to Kalydeco, and securing access to Orkambi or Symdeko for those who would not benefit or could not access Trikafta.
Keep an eye on our advocacy timeline to track how this campaign is progressing.
We'd love to know just how many emails or letters are being sent to MPs - please let us know by emailing email@example.com or by copying us into the email. If you get a photo with your MP, please send this too!