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. Together, we have the power to create a brighter future where people with cystic fibrosis can live a life unlimited, so let’s speak up and make it happen, sooner.
Explore our campaigns and advocacy priorities below, and find out what's happened so far on our advocacy timeline.
If you have any questions or want to help out, contact email@example.com – we'd love to hear from you!
In NZ people with cystic fibrosis (CF) experience a decline in health from birth and a short life expectancy. Trikafta is a medication that has been designed to treat the underlying cause of CF slowing the decline and increasing life expectancy. Clinical trials have shown significant improvement in health outcomes for patients with the most common genetic mutation that people with CF in NZ carry. Publicly funding Trikafta in NZ will improve quality of life for people with CF and their families. The campaign to fund Trikafta also includes seeking access to other CF modulator therapies and CF medications e.g. Tobi Podhaler.
CFNZ is working with Patient Voice Aotearoa and other charities to seek reform of Pharmac and increased funding for medicines, in particular for rare disorders. This also includes supporting the development or Rare Disorders Strategy under the new health system arrangements.
CFNZ is supporting the Petition of Sue Haldane for Rare Disorders NZ, urging the government to commit to developing a National Rare Disorder Framework.
There are around 300,000 Kiwis living with a rare disease. NZ lags behind most OECD countries in supporting people living with rare disorders and their families to access the best healthcare. A shift in mind-set is needed for rare disorders to stop being considered in isolation, and instead to be regarded as a significant factor within health policy frameworks. This is in alignment with the global rare disease movement headed by Rare Disease International.
To add your voice, please sign the petition to develop a National Rare Disorder Framework.
On 26 February 2020, PHARMAC announced its decision to fund Kalydeco for people with cystic fibrosis with the G551D mutation.
Creon Micro is a modified-release granule formulation of pancreatic enzymes. This formulation allows for smaller doses of the medicine to be administered.
PHARMAC’s began funding of Creon Micro from Monday, 1 June 2020, through an agreement with Mylan New Zealand Limited.
Prior to funding, many parents and caregivers were portioning out the amount needed from the funded capsules into a child’s food. This led to wastage of the leftover medicine and the possible risk of giving the child the wrong amount.
The dose can be measured with the special scoop prior to mixing with food or fluids, for use in infants and children who are unable to swallow capsules.
Cystic Fibrosis NZ submitted a letter of support earlier in the year, outlining the benefits that access to Creon Micro would have on our young Kiwis with CF and their family.
Contacting your local member of Parliament is a powerful way to help raise awareness of cystic fibrosis and some of its challenges.
Anyone can contact their local MP, all you need to do is ring their local office and make a time to meet.
MP’s have a responsibility to meet the needs of people in their electorate and are sensitive to what their electorate needs as they need the support of local people to get re-elected.
Our advocacy toolkit we used for our Kalydeco campaign has great information about meeting and writing with decision makers.
Having a personal story has the greatest impact and are a powerful way to get a message across.
You can find the contact details for all New Zealand MPs on the New Zealand Parliament website (scroll to the bottom to download the contact spreadsheet).
Our four regional Community Support Leads (Social Workers) are personal advocates 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 the CFNZ Fieldworkers.
Often peoople with a persistent 'CF cough' get unfairly targeted, with people assuming they have a virus, or their cough is contagious. CFNZ created a set of "compassion pins" to help minimise those situations, and educate people about CF.
The badges available say:
Please email firstname.lastname@example.org with your name, address and which badge(s) you'd like. These are free of charge to individuals with CF and their families.