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30 Apr

Advocacy Update April 2020

30 April 2020

Advocating for people with CF still remains one of our top priorities, even during COVID-19.

We continue to support the work of Patient Voice Aotearoa (PVA). PVA was formed as a collective of patients, caregivers, whanau, advocates and charitable organisations, campaigning together for the rights of New Zealanders. PVA aims to provide a unified patient voice to help inform better health policy and improve access to healthcare.

In late March, Jane Bollard coordinated a facilitated day with PVA and the charities who support PVA to develop a strategy and action plan around the Double the PHARMAC budget petition. CFNZ felt it’s important to harness the collaborative voice of all charities seeking medications and to be clear about what the 35 agencies supporting PVA could action to get results. 

Immediately after this meeting we went into lockdown and PVA developed its open letter to Jacinda Ardern for increased funding of medications for people with pre-existing health conditions across a range of rare disorders, chronic illnesses and cancers.

Read the open letter 

During April, Jane met with PVA representatives again to discuss progress following the open letter. PVA reported good success with getting stories in the media. Our advocate Lisa Woods continued to work with PVA to develop a communications plan, including charities talking with local media about the impact of COVID-19 for vulnerable people. PVA is keeping a watching brief on the impact of Covid-19 on PHARMAC’s funding of medications and we will support any collective action needed if it appears medicines funding is being diverted towards the coronavirus response. PVA is also looking to revise the closing date of the Double the PHARMAC budget petition.

We continue to engage with PHAMAC and Vertex Pharmaceuticals for access to Trikafta, of which its funding in New Zealand is our most important advocacy project. Following the recent success with Kalydeco we’ve written to both organisations to urge collaboration towards making Trikafta available to everyone who needs it in NZ.

Jane attended a virtual meeting this month with the new country manager of Vertex, Lauren Carey, who’s based in Australia. Top of the discussion was the need for funding of Trikafta. Jane and Lauren will meet again once Lauren has met with PHARMAC and has established the next steps for precision medicines in New Zealand with Vertex. 

The CFNZ Board is totally committed to getting Trikafta but what steps Vertex is envisaging to that point have yet to be shared. Once clear on this we’ll develop a campaign which will require everyone’s support to reach milestones along the way. We don’t envisage it to be a quick journey, but it’s one that needs to start now. We’ve recently reviewed the Kalydeco campaign and we will look to use a similar model for the next campaign and ensure we build on our successes of which there were many.

Unfortunately Lisa Woods has accepted a full-time role rather than contracting so will no longer be working as our advocate. We thank Lisa for all her hard work advocating for our CF community, especially for the funding of Kalydeco. We are looking to replace Lisa as soon as possible.

We also submitted a letter of support to PHARMAC for the funding of Creon Micro during its consultation period. We first submitted an application for Creon Micro in late 2015. If successful, this will mean from 1 June 2020 people who have pancreatic insufficiency would have funded access to a new modified-release granule formulation of pancreatic enzymes and would make a difference to young babies and children with cystic fibrosis.

Find out more

Keep up-to-date with our advocacy work on our advocacy timeline