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14 Aug

Advocacy Update - August 2020

14 August 2020

Thanks to Sir Bob Elliot, and Bella, we have had a huge amount of publicity for Trikafta over recent weeks. This has resulted in Vertex publicly stating that they plan to apply to the appropriate government agencies, using their available pathways, to achieve Pharmac-funded access in the fastest possible way. 

In a meeting yesterday Vertex reiterated that they are fully committed to exploring access for people with CF in New Zealand to future Vertex medications. As a next step they plan to engage with the appropriate government agencies to gain their feedback into this process.

This is great news, a big step forward and we anticipate an update as soon as the process is determined. 

CFNZ is excited to be working on the Trikafta campaign with Trikafta for Kiwis, a group led by Carmen Shanks and supported by Eddie Porter, and set up to advocate for Trikafta. 

We are excited to be working closely with Vertex and with Trikafta for Kiwis, a group led by Carmen Shanks and supported by Eddie Porter, and set up to advocate for Trikafta. 

You can access their updates on the Trikafta for Kiwis Facebook page, here >

As with the campaign for Kalydeco, 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.


Recently Jane attended the Medicines NZ dinner hosted by the Minister of Health, Hon. Chris Hipkins, with a panel discussion on Medicines Inequity - the problems & potential solutions. Medicines NZ advocates for better access to NZ patients to modern medicines through the public health system by supporting:

  • An updated to the medicines policy and strategy, which CFNZ participated in the consultation process.
  • Collaborative implementation of a rapid access scheme for modern medicines
  • A defined separate medicines budget appropriations process leading to better transparency and governance of the budget.


We’re continuing to collaborate with Medicines New Zealand, Patient Voice Aotearoa and Rare Disorders NZ, to ensure that the ‘access’ conversation remains front and central to key stakeholders. Thank you to the thousands of people who supported the ‘Reform PHARMAC and Double the PHARMAC budget’ petition following recent publicity.  The petition closes soon on 22 August so there is still time to add to the 33,000 odd signatures. 

You can add your voice by signing the petition here.

Christine Perrins, who has worked closely with Jane over recent months on strategic advocacy issues including input into a new medicines policy and strategy, will be putting her focus into the development of the Trikafta campaign strategy in conjunction with Trikafta for Kiwis, and to helping CFNZ address some of the wider issues that hamper access to medications for kiwis with CF.

You can find updates on all our advocacy efforts on the website or Access for Aotearoa Facebook page here >