Advocacy Hub

We advocate on behalf of the CF community on issues that matter - access to medicines and equipment, better welfare assistance and equal care for all – and the more people join in, the louder our voice will be. Explore the different issues we're tackling below, and see the progress on our advocacy timeline.

View advocacy timeline

Campaign Timeline

Campaign for Kalydeco

New Zealand is the only country in the OCED (with a high incidence of CF) that does not fund Kalydeco for people who have the G551D gene (approx. 32). We're lobbying hard to get this medicine funded.

Join the campaign
Kalydeco

TOBI Podhaler Application

This is a product that delivers the antibiotic tobramycin by aerosol. It takes CF patients just one minute to inhale this compared to around 20 on the conventional nebulisers. This is available in Australia and the United Kingdom. CFNZ has applied to Pharmac for this product to be listed on the Pharmaceutical Schedule. Pharmac has referred this application to its Respiratory Sub-Committee for consideration.

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Fight for Orkambi

Orkambi is another high-cost medicine that has been effective for treating patients with the common F508del gene (approx. 162 people). This is funded in the US and Ireland. The CF community in the UK and Australia have been lobbying for a number of years to get this medicine publicly funded, with Australia recently being successful.

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PHARMAC funding

CFNZ is working with other rare disorder groups to increase funding for rare medicines. At this stage, the majority of people with CF don’t qualify for rare medicine funds because their genetic type of condition is considered too common by Pharmac’s criteria. It's also impossible to argue that cystic fibrosis medicines will benefit a large percentage of the general population which is what Pharmac’s main budget is for. 

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Funding of medical equipment

CFNZ is probably the only charity in New Zealand that funds medical devices for patients. In July 2017 we met with Pharmac to see if they could take over the funding of nebulisers and compressors which are not funded by many DHBs. We have been informed we will need to approach each DHB individually to ask them to take over the funding of these devices and this is a work in progress.

Tailen nebulising 2018

Personal advocates

Our regional field workers act as personal advocates for people with cystic fibrosis. They help them navigate multiple systems, including school, employment, welfare support, clinical care and any other issues that arise.

Meet the fieldworkers
Jude Dad Yaam