22 August 2022

Our CF clinicians have told us that they are seeing increasing numbers of people who are privately accessing CFTR modulator therapies from a range of sources, including by donation and from overseas. 

Unfortunately, some people with CF will not be able to safely take CFTR modulators, while others may have significant drug interactions which need to be avoided or managed.  It is also important that dosages are not changed without clinical advice.

CFNZ completely understands that some people will want to access CFTR modulators in any way they can while we wait for Trikafta to be funded and access to Kalydeco widened.  However, it’s essential that no one puts themselves at further risk by doing so and also that any use of CFTR modulators is optimised to ensure maximal potential benefit.

So, please - if you are intending to seek access to a CFTR modulator, please talk to your CF clinician before you do so. And if you have access to or you receive any CFTR modulators that have not been prescribed by your New Zealand CF clinician, please do not take them until you have consulted with your CF team.