6 October 2022
Pharmac stealing 10,456 years from people with CF
In August we shared a message with you following the Medicines NZ Dinner that we had done everything that could be done in preparation for the Pharmac ranking meeting in September. We just had to wait.
On the 13th and 15th of September, CFNZ met with Pharmac to discuss the Trikafta application, the expansion of access to Kalydeco, and the outcome of the ranking meeting.
As we know, this wasn’t the news about Trikafta we wanted to hear - Pharmac had made the decision not to prioritise funding of Trikafta at this time.
All the information to this point was encouraging, including Pharmac’s media release in August with the outcome from PTAC, and the Technology Assessment Report, which that highlighted Trikafta would provide benefits equivalent to 27 more years at full health, when compared to current treatments.
We are shocked about this decision, and it defies logic that given the significant positive impact that Trikafta can have on the life of a person with CF, it doesn’t make the cut.
So, it’s time for us to go in to battle ahead of the December Pharmac ranking meeting. We have taken a zero-tolerance policy in the way the process is being handled to progress the Trikafta application, and we'll continue to ask the tough questions, but we need your help.
Now is the time for us to ramp up the campaign to get accountability, decisions, and action. We want our CF community to take a loud and active role in helping with this. The time for playing nice has passed and the gloves are off.
To support you with the tools you need, you can download the Advocacy Toolkit here – this contains information about the Trikafta Campaign including key messaging, tips and ways to answer common questions. The toolkit also includes our Media Kit and the press release from the 16th of September.
If you have any questions at all please get in touch with Christine Perrins, our Advocacy Adviser on firstname.lastname@example.org or email Lisa Burns our Chief Executive on email@example.com
We are in this together and we will be relentless in our determination to be heard.
Media Kit 2022 - here
Press Release 16 Sept 2022 - here