6 October 2020
Making Trikafta available in New Zealand is CFNZ’s highest priority and the major focus of its advocacy programme. To ensure there is one coordinated voice for the CF community, CFNZ has joined with Trikafta for Kiwis to work to secure public funding for Trikafta as soon as possible. We are in regular communication with the key parties, including Vertex, and are currently exploring how the approval and funding process can be progressed quickly.
We’re not yet in a position to advise a potential timeline for approval, but we will do so as soon as we possibly can. CFNZ is very much aware of the urgent need to secure this medicine for the benefit of the CF community, as well as the health system.
Leaders agree to inquiry into PHARMAC model
If you missed it, during the 30th September Election 2020 Leaders' Debate, we were pleased to see Jacinda Ardern mention cystic fibrosis unprompted during the segment on access to medicines.
Cystic fibrosis is our entire world - but to the world cystic fibrosis is just one issue amongst a plethora of conditions, injustices, social, economic, and welfare problems. It means CFNZ works incredibly hard on behalf of the CF community to have our voices heard... it's a long and relentless process.
To see our PM mention CF unprompted speaks volumes. It's an acknowledgement that the many years of raising awareness, campaigning for access to treatments, the community sharing their stories, and shouting about how the Pharmac model disadvantages CF, is paying off and the message is being heard loud and clear.
CFNZ has built up a good relationship with Vertex over many years and behind the scenes we continue to support them with their application to PHARMAC for Trikafta. But this is only half of the picture.
Getting Trikafta and other precision medicines is made infinitely more difficult due to the medicines funding model. The model means New Zealand ranks amongst the worst in the OECD for access to modern medicines, and this has to change.
We are pleased to see both parties agree to an inquiry into the PHARMAC model, and CFNZ will continue to put pressure on the successful party to ensure this happens.
In the meantime, the most positive way of supporting the campaign for Trikafta is to sign the PHARMAC Reform petition, which currently sits at over 37,000 signatures. A larger budget and funding model more in line with that of other OECD countries is an essential prerequisite for the funding of Trikafta and other CF medications.
Sign it here: PHARMAC Reform Petition
As always, we are incredibly grateful to Patrick Gower for being a champion for the CF cause.
Election 2020 Leaders' Debate 30 September 2020
