We have just received the amazing and totally unexpected news that Pharmac has agreed to fund Kalydeco! This is huge news for the CF community and I’m so, so pleased for all those with the G551D mutation (not Rachael). We believe this will pave the way both for drugs for other CF mutations and for other rare disorders (I may be wrong, but this may be the first time Pharmac have funded a drug across the board that will benefit such a small number of individuals - less than 30)
Pharmac will have been in negotiations with Vertex for a while so, I’m afraid, we can’t take any credit for this decision but short of doubling Pharmac’s budget if there was, for us, a single realistic outcome from our trip that would make it all so worth while, this decision would be it.
So, once again, I would like to thank all our supporters. Please know that today, unlike Wednesday, there is a smile on my face and a lightness in my heart that can’t be erased.
I’ve rightly been critical and hard hitting during this trip but credit where it is due… Thank you, Pharmac, Vertex and anyone else behind the scenes who pushed this decision through - yes even any MPs involved - genuinely. I suspect they would have loved to make this announcement this a few days earlier.
So, that’s another one off the wait-list only something like 98 to go. For all those who were part of our story who aren’t in the CF community, we will continue to work with PVA to see that one day you too can enjoy similar uplifting news yourselves. We just pray it is not too late.
Kia Kaha - together we are strong.