023 CF Finals
20 Dec
Advocacy

December advocacy update

This year we've been focusing on building our capacity for advocacy. We've developed an advocacy strategy that covers many different areas, all with the goal of improving life for people with cystic fibrosis. We’re talking with branches to get their feedback and hear how we can support local advocacy efforts. Once the strategy is finalised we’ll put out a summary so everyone can easily see our advocacy priorities and how we will achieve them.

One of our advocacy priorities is to get more treatments publicly funded, and several months ago we launched a campaign with Kalydeco for Kiwis to get the treatment Kalydeco publicly funded.

 The main focus of the campaign this year was PHARMAC because in early September PHARMAC called for applications from suppliers of medicines for rare disorders. Vertex, Kalydeco's manufacturer, put in an application for Kalydeco.

So we’ve been talking with PHARMAC and politicians about why it's important to fund Kalydeco. We also launched an awareness campaign to highlight the public support for funding Kalydeco – a big thank you to everyone who took part.

Our last meeting for the year was held recently with MP Michael Woodhouse (National Party Health spokesperson), and National MPs Shane Reti and Tim Macindoe. It was a good meeting and they were very interested in the campaign and hearing how it goes.

We expect PHARMAC to announce their decision early 2019, but if the decision is not what we want we're not going to stop there, we'll keep pushing until we see Kalydeco publicly funded.