8 May 2019
Cystic Fibrosis NZ and Kalydeco for Kiwis have just received news that the Pharmacology and Therapeutics Advisory Committee (PTAC) of PHARMAC has recommended Kalydeco be funded with a low priority for the treatment of cystic fibrosis with the G551D mutation.
We’re pleased PTAC has recommended Kalydeco be funded as its recommendation to PHARMAC in 2015 was to decline this life-changing medication.
PHARMAC has ranked Kalydeco against other funding applications, and it’s not known how long Kalydeco will have to wait on the list to be funded and become available. PHARMAC is woefully underfunded with many approved life-saving medications remaining unfunded.
“The CF community has had to battle for access to medications over many, many years but none as life-changing as Kalydeco. The worldwide CF community reeled in disbelief when told two years ago by the then CFF President, that he “could not fathom how a developed country like NZ did not have access to Kalydeco”.
"We have been playing this game a long time and this life changing medication is high priority – therefore access to it should be a given. Anything less in unacceptable. Our people are high priority, their lives matter and Kalydeco works,” says Jane Drumm, CFNZ Board Chair.
Kalydeco for Kiwis, CFNZ and the CF community will continue to put the pressure on until Kalydeco is not only funded, but accessible to all who need it.
Following the announcement, PHARMAC has offered to speak with CFNZ so we have a clear understanding of its decision and the process going forward. We will share any updates with our community and supporters.