The PHARMAC rare disorder subcommittee is due to meet very soon, so it's important we keep the letter writing going. If you haven't already, please show your support and send an email to PHARMAC.
A template letter you can use and PHARMAC's email details are included in our advocacy toolkit. It's a good idea to cc in the Minister of Health and CFNZ as well.
As part of the campaign we're gathering stories about people who will benefit from Kalydeco – stories are a powerful way to get our message across. We hope to create a postcard to send to MPs, media etc. with photos of people to bring home the reality of the campaign. If this is something you can help with or take part in please get in touch.
Tip for taking action this week: "Like" our CFNZ and Kalydeco for Kiwis Facebook pages and help us raise awareness by sharing posts and information online.
For more ideas to support our campaign, check out our advocacy toolkit.
Background
Early September PHARMAC called for applications from suppliers of medicines for rare disorders. Vertex, Kalydeco's manufacturer, put in an application for Kalydeco. A decision is expected early 2019.
Contact:
Eddie Porter, Spokesperson, Kalydeco for Kiwis – 022 638 4738
Jane Bollard, Chief Executive, Cystic Fibrosis NZ - 021 283 0051
