creon v3
19 Dec

Social & Economic Cost of living with CF in NZ

19 December 2019

CFNZ has appointed Deloitte to research and prepare a report on the Social and Economic Cost of CF in New Zealand. Responses will help provide insight into the impact for people who are living with CF in this country and their carers.


How will the report be used?

The report will provide a significant and valuable tool in our efforts to secure Kalydeco, Orkambi, Symdeko, and eventually Trikafta in New Zealand. To date there has been no economic or social cost data to provide to Pharmac or the Government, so the ability to present this powerful argument could be a game-changer.

The information will also be used by Rare Disorders NZ who, in conjunction with Medicines NZ, are developing a paper to show the Ministry of Health and the Government where the barriers are within the current health services.  Both organisations will use this data to advocate for better access to treatments and care.


Who is the survey open to?

The survey is open to anyone living with CF AND their family members and carers. Feel free to pass this email on to anyone you think should complete it.


How do I take the survey, and how long will it take?

You can access the online survey via this link

It should take no more than 25 minutes to complete. All responses are anonymous.


When does the survey close?

Please complete the survey no later than the 21th February 2020.


Thank you for participating in the most important survey for 2019/20!