The focus of the CFNZ Board at our recent August meeting was on our agreed key priorities of: advocacy, a strong CFNZ and a strong CF community.
As Chair I find it heartening to hear that our new website has had 38,000 'engagements' and that people are engaged for longer than ever before. Along with this, we have already had almost $10,000 in donations through our new website since the beginning of July.
Advocacy and the strengthening of our CF community was also evident as we welcomed Eddie Porter to our meeting where the board discussed with him the work he and his wife Emma have started with the Kalydeco for Kiwis cause. As an outcome of these discussions we as a board left behind our previous position on advocacy for new treatments and I was directed by the board to encourage our CF community to throw their full weight behind both CFNZ and Kalydeco for Kiwis and the campaign that we will undertake together for precision medicines like Kalydeco and Orkambi. With the funding of Orkambi in Australia we see that the time is right to get first Kalydeco and after that all other precisions medicines.
Although it may not seem like it fits the 'stronger CFNZ' priority, CFNZ is working towards the exit from the provision of equipment - primarily neb. Let me reassure everyone that this does not mean that any PWCF will go without the vital equipment that they require. What it does mean is that all DHB’s around NZ have been informed that it is the opinion of CFNZ that over the next two years we will work with DHB’s on a smooth exit as it has long made sense that the organisation that prescribes the treatment also provides the facility for taking that medicine/treatment. This has been our advice from PHARMAC. Please talk to your CFNZ Fieldworker about your equipment if you have any concerns and they will be able to help and advise you.
We are also looking forward to hearing the outcome of our submission on the TOBI Podhaler with PHARMAC which is currently at the stage of getting clinical input from the Respiratory subcommittee.
In the “research” space CFNZ are working with Cure Kids on a strategic session with Researchers which will be a facilitated meeting looking at potential areas for CF research that can be carried out in NZ. This way of working has already identified a very exciting piece of research for Child Cancer and the CFNZ Board see this as strengthening us both as an organisation and as a community.
So, just to recap on our CFNZ priorities for 2018/19, that we focus on at every CFNZ Board meeting – we are working towards gaining access to world-class medicines and treatments, advocating for high quality individualised care, building a strong CFNZ, with PWCF connected to support, information and education resulting in a strong CF community.
These are exciting and challenging times.
- Jane Drumm, CFNZ Board Chair
