CLL Advocates August Newsletter
CLL Advocates August Newsletter
Greetings
Your Trustees have been active since we sent out our last newsletter.
Catherine Isaac, Chair, has resigned and we wish to pay tribute to her:
Thank You, Catherine Isaac
We extend our heartfelt thanks to Catherine Isaac for her dedicated service to CLL Advocates NZ since its inception. Catherine has recently retired from her role as Chair.
Her commitment, insight, and leadership have made a lasting impact on our work and the lives of those affected by CLL. From championing access to life-changing treatments to advocating for systemic change in the Pharmac model, Catherine has been a steadfast advocate and a source of wisdom and encouragement for the team. Catherine’s contributions have left a lasting legacy and we are grateful for the time and energy she has devoted to our cause.
Thank you, Catherine, for everything you’ve done.
Trustees update
Ruth Spearing (CLL Advocates Trustee) has been acting as de facto Chair and keeping us all busy! Ruth has now been elected as Chair.
Rob Crozier made a submission on the Medicines Amendment Bill in May, a copy of which is available on our website: www.clladvocates.nz
Rob was also present at the reading of the budget in Parliament at the invitation of Malcolm Mulholland (Patient Advocate Voice Aotearoa) and managed to make the case about the lack of funding for blood cancer medicines to Radio NZ. The media release has been posted on our website.
Rob has also taken on the role of participating in monthly online meetings of the Pharmac Consumer Advisory Committee which is attended by the Pharmac CEO and senior executives. Pharmac has recently established a Patient Advocacy Network chaired by Malcolm Mulholland with Tim Edmonds, CEO of Leukaemia and Blood Cancer NZ as a member.
The current key concern for us (and for haematologists) is getting Pharmac to approve the use of Venetoclax and Ibrutinib in combination. We are waiting for an update as to where it sits on the priority list. Tim Edmonds raised the need for a Modern Medicines Access Strategy — an idea that we should get behind.
Marc Pearce (Trustee) has taken on responsibility for keeping the clinical trials information on our website and Facebook page accurate and has been researching comparative international data on the proportion of Budget: Health being spent on new medicines.
Lisa Ryan (Trustee) is taking responsibility for our website, alongside Melanie Murray, our valued administrator.
TRUSTEE’S MEETING 6 August
Trustees met in an online meeting and began with a lengthy presentation from Matt Tyson, Janssen, reporting on the stalled approval process for Ibrutinib + Venetoclax for CLL. We had a long discussion about strategy for moving this forward and are now working on implementing that strategy. If you are currently self-funding this treatment or either of the drugs separately we’d like to hear from you.
Trustee vacancy
Trustees decided to defer discussion re adding an additional Trustee to the next meeting — scheduled for 8 September. If you’re reading this and feel you have something to offer watch this space…
Declaration calling for urgent government action
New Zealand’s health system is in real trouble, and a group of passionate health organisations is asking Kiwis to help turn things around.
They’re inviting everyone to sign a Declaration calling for urgent government action, and you can add your name at one of the 16 special events near you on Tuesday, 18 November 2025.
The campaign is backed by Patient Voice Aotearoa, NZNO, RNZCGP, BHAG, Hauora Taiwhenua, and ASMS. Keen to help?
Below is a flyer with information on the Wellington event.
For the other 15 locations, please head to https://www.patientvoice.nz/petition-locations to learn more.