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3 Sep
CFNZ

Update from the Board - September 2020

3 September 2020

The Board met again on the 1st of September – another Zoom meeting which isn’t quite as much fun but does seem to be effective.  Key items on the agenda were the structure review project, Sweat4CF, and advocacy – particularly around Trikafta.  We also spent some time reflecting on the enormous contribution that Sir Bob Elliot made to the clinical treatment of CF in New Zealand and around the world.  Not only did his clinical research have an enormous impact, but he also developed some wonderful and lasting relationships with people over the years as a paediatrician.  He will be sorely missed but his legacy will live on.

We are still in the feedback stage of the structure review project.  After Michele and her team presented to the branch chairs and committee on their findings, some branches are looking for more time to arrange meetings and consider this as a full branch.  We’ve therefore agreed that we should extend the consultation period out to the end of September.  If that means your branch can give this more thought, don’t hesitate to provide more feedback even if you have already given some.  We won’t of course, be able to take a proposal to the AGM but as a critical issue of CFNZ, we feel it needs time for people to carefully consider.  We will bring it to a Special General Meeting later in the year.

The campaign to encourage Vertex to apply for access to New Zealand for Trikafta and for Pharmac to fund it, has gained some great coverage recently, thanks largely to the media stories around Sir Bob Elliot and Bella.  This is a highly complex issue and unfortunately it’s unlikely to deliver us Trikafta overnight.  However, Jane and her team, working in collaboration with “Trikafta for Kiwis”, have made good use of the media coverage and are working constructively with Pharmac and Vertex to help lever open the door.  They are also developing a wider advocacy strategy that will give us the best chance of ultimate success.  It is certainly a tantalising prospect and it will remain one of the Board’s top priorities for the next while.

The Board was also really pleased to see the early progress with the Sweat4CF Campaign.  As of today, the total amount pledged is $59,007.  This is a great result for this early stage so we are very hopeful that this will give us a new and very valuable stream of income.  However, it can still grow more, so please, if you haven’t already, set a challenge for yourself and get your friends and families to sponsor you.  You could encourage them to do the same.