A letter to Rt Hon Jacinda Ardern - I want hope for my son with Cystic Fibrosis
My name is Ingrid and I am the mother of a two-and-a-half-year-old with Cystic Fibrosis (see the cutie below). I also host a podcast called What The CF! all about this cruel condition where I share what it's like being a parent of a child with CF. Creating this podcast has helped me process what was a very devastating diagnosis.
Cystic Fibrosis is a life-limiting incurable genetic condition that affects around 540 New Zealanders and more than 70,000 globally. My son has it. He has it because I have a CF causing gene, and so does my husband. We didn’t know this (as most don’t) before he was born, but now, sadly, we do. Many of those with Cystic Fibrosis don't see their 30th birthday, never mind their 40th - well, as it stands today anyway.
My son Orson who has Cystic Fibrosis
As time has passed, we've learned all we can about CF, and overall, the outlook is positive for the future, but (this is where you come in) only if governments are able to provide CFers with the life-changing medications that are now available.
The creation of drugs for CF known as CFTR modulator therapies have been helping our community for a decade, one of which, Kalydeco, is currently funded by Pharmac (albeit with restrictions) but can only help a small % of CFers.
Today, there's a drug known in NZ as Trikafta. It has the potential to help 90% of people with CF and it really is a 'miracle' drug (see Patrick Gower's brilliant coverage on Trikafta with Bella's story and Izaeah's story).
In December 2021, Medsafe gave consent for the use of Trikafta and in February this year, Pharmac recommended funding it. The problem is money.
We know you're aware of our particular plight as you name-checked our community during your 2020 election debates. I voted for you as my MP and PM and I think you're a brilliant politician and leader who has seen us through some tough times here in Aotearoa. I also know you're being pulled in a thousand different directions with many priorities - but our small group of Kiwis really need you right now.
This is life and death for Kiwis with Cystic Fibrosis and Trikafta means the difference between a happy healthy childhood or one spent in and out of hospital, missing school, friends and missing out on being a 'normal' kid with a future to plan for.
I'm asking you to think about our small and dedicated Cystic Fibrosis community when you're considering your budget for Pharmac and the huge impact that widely funding Trikafta will bring to these New Zealanders and their families. Think about my two-year-old son Orson who is just like any toddler if it wasn't for those two nasty genes of his.
Please consider giving us hope for the future, one where we can all breathe a little easier, a future where our kids have a 40th birthday and many more after that. Thank you for reading and we eagerly await the budget decisions.
Today, I received a response (see below). Let's keep up the noise for our small community.