23 February 2022
Today our CF community received disappointing news.
Pharmac published a media release alongside the minutes from November’s PTAC meeting with their recommendations regarding funding for Trikafta.
These recommendations are inconsistent with those from the Respiratory Subcommittee where their expert clinical advisers recommended a high priority for funding Trikafta for people with cystic fibrosis aged 6 years and older.
PTAC has recommended to Pharmac that Trikafta be listed with a medium priority for 12 years and older, and the decision deferred for those under the age of 12, pending the availability of further data.
Despite the claims that further data is required, Pharmac has been provided with more data and evidence than any other country to support the application, which is why it is hard to understand the reasoning behind PTAC’s recommendations.
We are very concerned about PTAC’s recommendation to defer funding Trikafta for age 6 to 11 year olds. We recognise that many of our CF community in this age group have significant ill health and the importance of early treatment to reduce long term damage.
Trikafta is now funded in 25 countries, meaning New Zealand is lagging behind the rest of the world when it comes to accessing life-saving treatments that would make a real difference for Kiwis living with cystic fibrosis.
CFNZ acknowledge that this latest news will have created uncertainty around the priority and ranking of Trikafta and what this will mean in terms of a pathway forward.
We have a meeting scheduled with Pharmac next week. We will be reviewing what options are available to us in responding to the PTAC minutes, seeking further clarification on PTAC’s recommendations.
Most importantly we are not giving up. We know that today’s news will feel like a set-back, and your feedback about how you feel has been overwhelming. Keep sharing this with each other, take heart that we’re in this with you and we know how important it is.
Hold on to hope.