Pharmac is proposing to fund Ibrutinib!!!

I’m very pleased to advise that Pharmac has today asked for feedback (Follow this link) on a proposal to fund ibrutinib for New Zealanders with CLL. At last!

It’s seven years since Janssen (the supplier) first applied to Pharmac for funding for ibrutinib for patients with relapsed or refractory CLL.

CLLANZ as a patient advocacy group, and our founder the late Dr Neil Graham in particular, have battled hard over the last few years to highlight the desperate need for this treatment. I’m only sorry that Neil did not live to hear this news.

While it’s great that Pharmac is finally moving on this, it is disappointing that they’ve significantly narrowed the criteria first sought for this treatment. These were to fund it as an alternative to venetoclax-containing regimens, and for previously untreated CLL patients for whom chemoimmunotherapy is inappropriate, and notably those with 17p deletion, and TP53 and unmutated IgVH.

However the Pharmac proposal now up for consultation is to fund ibrutinib for relapsed/refractory CLL patients only after they’ve had venetoclax, or for patients where venetoclax is intolerable. So it’s not available as an alternative to venetoclax, an option clinicians have been calling for urgently for some time. Importantly, it also means it won’t be funded for patients who are currently self-funding ibrutinib, or patients receiving it on a compassionate access programme or on a clinical trial.  This seems unreasonable and unfair, and we want to seek clarity from Pharmac on what will happen with these patient groups for whom treatment with ibrutinib remains a high priority.

Pharmac is inviting feedback on their proposal until 4pm on Thursday, 29 September. CLLANZ will be providing feedback and we strongly encourage you as patients and whanau to email Pharmac with your own feedback on this to:  But we feel that it would be more effective to have a coordinated response from CLLANZ friends and supporters on this and propose to come back to you with some guidance, once we have had time to absorb the detail of the proposal and its ramifications.

Let’s not detract from the fact that today’s development is undoubtedly great news, and I’m sure we will all want to support the proposal. But we might also wish to comment on the eligibility restrictions. It may be, with sufficient encouragement and evidence from the CLL community, that Pharmac will consider extending funding of ibrutinib for all relapsed/refractory CLL patients and ideally, as a first line treatment, finally putting us in step with the rest of the world.

As you may be aware, following the highly critical report by the independent Pharmac Review Panel, Pharmac has undertaken to be more open to patient voices, and we want to take this opportunity to be heard!

With best wishes

Dr Gillian Corbett (On behalf of CLLANZ Trustees)