Parliamentary Event – 31 March 2026

By Simone Brown, Executive Lead, CFNZ

Tuesday 31 March was a day to remember.

CFNZ had the privilege of bringing together Health Ministers and Under Secretaries, government department heads and key decision makers within our healthcare system, our Wellington branch committee, and – most importantly – members representing many families within our Wellington community. We gathered to recognise the funding of Alyftrek and the widened access to Trikafta and Kalydeco – medicines that we know can fundamentally change the trajectory of our younger ones lives.

It was a moment that had been long awaited. The event was intimate and reflective, acknowledging those who came before us and those who follow. It created space to pause and take stock of the journey so far. There were many tears of joy, grief, and of relief.  

Sarah Ryan on behalf of her family gave a beautiful speech on the emotional toll, the challenges, and the realities of cystic fibrosis.  She spoke of the impact that early intervention and a proactive approach to healthcare can have on her child’s future, and the future of many other families. Throughout, she held wonderful composure, even as her two young boys, Cooper and Beau joyfully tore around the room just as little boys should – a nice reprieve in an emotion-filled room.

Alongside the Ryan family, many others helped make the event what it was. We are grateful to Professor Cass Byrnes, CFNZ Wellington Branch Chair Paula, Kim from Rare Disorders NZ, the Chair and CEO of Medicines New Zealand, representatives from Health NZ, the Board of Pharmac and its Chair Paula Bennett, representatives from Vertex and many others. You each contributed to making this a moment to remember.

A special thank you to Minister Todd Stephenson for hosting the event at Parliament and acting as MC; to Deputy Prime Minister David Seymour and Minister Simeon Brown for speaking; and to Kirsty Parsons who could not attend due to cross-infection risks but sent a beautiful video in support. It truly rounded out the event.

In my speech, I shared a reflection from a conversation I’d had just days prior with a CF clinician from Denmark:

“We are standing on the shoulders of the giants who came before us”

That sentiment captured the tone of the day.

Our event was not just a celebration of a funding decision – it was a recognition of the years of advocacy and perseverance. It honoured those we have lost and those who are still without access. It acknowledged the families who have pushed and fought for better health outcomes, the clinicians who never stopped advocating for progress, and the community who have stood firm beside us all.  

While it was a positive day, our mission remains the unchanged: to be the consistent thread in the lives of those living with cystic fibrosis, and their families, walking beside them and ensuring quality of life. That means continuing to search for options for those who do not yet have access and remaining closely connected to our community to ensure that we evolve with the needs of those we support.

To everyone who has contributed to this moment, and to those who continue to walk alongside the CF community: thank you.

We are truly standing on the shoulders of giants.