Our meeting was to talk about Trikafta for children aged 2–5. As this medicine received a high priority recommendation last year, and we wanted to understand how things are progressing. Pharmac confirmed that the application is moving through their internal process and is still on track to be considered at their September 2025 prioritisation meeting. However, even if it reaches that stage and moves to the Options for Investment (OFI) list, there’s still no guarantee it will be funded.
One of the main issues discussed was how Pharmac is weighing the cost of the medicine against its benefits. The challenge here, is that there isn’t much traditional data available for children this young. Pharmac also asked us to help show the unmet need for 2–5-year-olds, since standard lung function tests don’t apply to our younger ones and it’s harder to measure the benefits in the usual way.
We have repeatedly raised concerns that the current process doesn’t take into account the full impact on families — things like early trauma, frequent hospital visits, long-term damage, and the emotional toll. We also pointed out that Trikafta for this age group is already available in over 40 countries, and some New Zealand families are or have already moved overseas to access it. This situation is urgent and unfair.
“Our families live with the weight of uncertainty every day, and we know you deserve better. We are committed to walking this journey with you, advocating for timely, equitable access to treatments that we know can make a difference. Every person with CF deserves equitable access to treatments that work, and we will keep fighting until that’s a reality for every member of our community.”
— Lisa Burns, Chief Executive, CFNZ
We know the delays in accessing life-changing medication like Trikafta are not just numbers on a page — they’re lived experiences. They’re missed milestones, hospital stays, and moments of fear and frustration for families across our country.
To help amplify our voice, we need your help! We are asking our community to rally behind our little ones and share your story about the impacts delayed access to treatment has and causes. We have created an advocacy toolkit and letter template to make it easier for our community to share their stories.
Whether you are a parent, grandparent, sibling, or someone with CF, your voice can help continue the conversation and keep the needs of our vulnerable young ones, top of mind. Simply click the below links and download the resources to assist you with your letter and help every decision maker in this application process, understand the real impact of delayed access to Trikafta.
DOWNLOAD THE TRIKAFTA 2-5 YRS ADVOCACY TOOLKIT
Once done, please make sure you sign your letter and email it to:
community@cfnz.org.nz by Friday 29 August 2025.
We will collate all letters and ensure they are delivered together - in strength and united like the community we are.
