Advocacy Hub

We advocate on behalf of our CF community on issues that matter, including access to medicines and equipment, improved welfare assistance and healthcare equality. The more people join in, the louder our voice will be. Explore our top advocacy issues and keep up-to-date with our progress on our advocacy timeline.

View advocacy timeline

Campaign Timeline

Funding of Trikafta

CFNZ is committed to advocating for Trikafta for Kiwis.

Following on from the success of our Kalydeco campaign, we continue to engage with Vertex and PHARMAC about the next steps to secure funding. We look forward to developing a campaign and using the support from our community.

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PHARMAC funding

CFNZ is working with Patient Voice Aotearoa and 35 other charities and rare disorder groups to help change the way PHARMAC funds medications for rare disorders. 

CFNZ currently supports the Double the PHARMAC budget petition.

Sign the petition
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TOBI Podhaler

In February 2018, CFNZ submitted an application to PHARMAC for TOBI Podhaler to be listed on the Pharmaceutical Schedule.

The application was reviewed at the Pharmacology and Therapeutics Advisory meeting in February 2020 and recommended it be listed with a cost-neutral priority. It now moves into the under assessment stage and further analysis may now be conducted by PHARMAC regarding the cost effectiveness and budget impact of its funding.  

Application tracker
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Funding of Orkambi

Orkambi is a precision medication for PWCF with the common F508del gene (about 162 people in NZ). Other countries including the USA, Ireland and Australia have successfully lobbied for its funding and CFNZ is committed to NZ joining the list.

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Funding of Creon Micro

CFNZ submitted an application to PHARMAC for funding of Creon Micro in late 2015.

In April 2020 we submitted a letter of support for its funding during the open consultation period. 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.

Application tracker
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Personal advocates

Our four regional fieldworks are personal advocate for people with cystic fibrosis.

They ensure PWCF and families receive financial, practical and emotional support and provide advice and information about school, employment, work, welfare support and other issues.

Meet our fieldworkers
Jude Dad Yaam

Campaign for Kalydeco

On 26 February 2020, PHARMAC announced its decision to fund Kalydeco for people with cystic fibrosis with the G551D mutation.

Cystic Fibrosis NZ and Kalydeco for Kiwis ran a joint campaign, lobbying to get Kalydeco publicly funded in NZ.

Our campaign
Kalydeco

Contacting an MP

Contacting your local member of Parliament is a powerful way to help raise awareness of cystic fibrosis and some of its challenges.

Find out how you can help.

Find out more
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