29 August 2019
Kalydeco for Kiwis spokesperson Eddie Porter is continuing his tireless effort to ensure New Zealanders aren’t left behind in access to precision medications for people with CF.
This month, Eddie launched a petition to the Government for the public funding of Kalydeco for New Zealanders aged two and over with the G551D mutation. In May, Kalydeco was recommended for funding with a low priority, which means it may linger for years on the funding waitlist.
Eddie has been working closely with CFNZ and Patient Voice Aotearoa as part of a wider project that urges for more funding for PHARMAC and an overhaul of its funding model.
As a collective, our CF community has been hugely supportive of the Kalydeco for Kiwis campaign, which has been instrumental in ensuring the voices of people with CF in New Zealand are heard.
“Since its launch, the Kalydeco campaign has been covered by the media through television, radio, print and the internet and we’ve seen the status of Kalydeco upgraded to now be on PHARMAC’s list of medicines awaiting funding,” Eddie says.
“But the most exciting aspect of the campaign has been the work done by everyone in our community. The writing of letters, the meetings with MP’s, the sharing of stories, it’s all been critical to the success so far,” he says.
“None of it has been easy, but it’s given a compelling and real human narrative to the campaign and one that’s not always easy to get across.”
With the petition now open and accepting signatures, our CF community – people like you – can make a huge impact to its success. Please sign the petition and share with your network of friends, family and colleagues.
For Facebook users, you can follow the Kalydeco for Kiwis page and share the petition pinned to the top of the page.
You can also find out more about the campaign to have Kalydeco funded on our Kalydeco campaign page.
And for Instagram users, Kalydeco for Kiwis has set up an Instagram page.
Malcolm Mulholland for Patient Voice Aotearoa has also launched a petition to Parliament to reform PHARMAC and double the PHARMAC budget. Patient Voice Aotearoa is a national collective of disease and illness advocacy organisations, as well as individuals throughout New Zealand. The primary function of the group is to advocate for the rights of New Zealanders. Sign the petition