CLL Advocates Newsletter Issue 10

Dear Friends of CLLANZ

It was very interesting to learn in the news this week of Pharmac’s ‘wish list’ of 73 medicines it would like to pay for, if it had the budget to do so.  It’s the first time Pharmac has released figures for what it calls its ‘options for investment’ list. The cost of funding them would be $417,670,000.00. Newshub got the story from an Official Information Act request – see it here, and see Pharmac’s formal response here.

The wish list is separated into proposals (118) and medicines (73), (as some medicines treat several illnesses) and it comes with a breakdown of how long they’ve been waiting.  Although the list hasn’t been released, we expect Ibrutinib to be on it, as one of the 14 (of the total of 73) that have been waiting the longest, i.e. for 6+ years.

The timing of this is interesting, coming as it does in the lead-up to the Budget (May 20), and with Health Minister Andrew Little confirming to Newshub that any additional funding for Pharmac comes down to a political decision. That reality is also reflected in the government’s decision to exclude funding from the ‘independent’ review of Pharmac that is currently underway.

Filling the budget hole to fund the 73 ‘wish list’ medicines would mean a 40% increase in Pharmac’s funding, an increase that would go some way to bringing us into to line with Australia, the UK, Canada, etc.  We don’t know what Pharmac’s bid has been for this year’s Budget, but last year they didn’t ask for any more money at all!

We in CLLANZ have worked hard over recent years through petitions, submissions, engaging with media, marching on Parliament, appearances at select committees, and actively engaging with Pharmac to advocate for access for CLL patients to Ibrutinib, among other treatments, as well as treatment pathway reforms, and faster, more transparent funding decisions. We’re very proud to have been part of the push to reform Pharmac, which is now seen as losing the PR battle.

We hope this work will bear fruit in the coming Budget, but in the meantime we intend to continue our advocacy as vigorously as possible.  In this regard I warmly encourage you to support the current ‘Lie Down For Life’ campaign running nationwide on 12 May by Patient Voice Aotearoa. And if you haven’t already signed their petition to Reform Pharmac and Double its Budget, you can still do so here. This will be presented to Parliament on 12 May, the same day as we Lie Down For Life!

Kia kaha

Neil Graham