CLL Advocates Newsletter May 2025
Greetings
We are very pleased to let you know that CLL Advocates NZ is up and running again, reset and refreshed with new trustees and a sharp focus on our mission. After losing three of our five founding trustees it’s taken us some time to rebuild, but we’re pleased to introduce and welcome our three new trustees, Rob Crozier, Marc Pearce and Lisa Ryan, all New Zealanders living with CLL and with great skills to bring to our mission. Read about them here on our ‘About us’ page.
We’re also very fortunate to have Amy Holmes, Consultant Haematologist at St George’s Cancer Care Centre in Christchurch, as our Medical Director, in addition to the very valuable support of Ruth Spearing, a highly distinguished New Zealand haematologist and leading light in the world of clinical trials.
Our thanks for their contributions go to founding Trustee Dr Gillian Corbett, and Trustee Diane Ward who retired from their respective roles as Medical Adviser and Trustee last year.
Strategy workshop
Our board met last month in Wellington in person and with two via video link. Discussions centred round the future direction of CLLANZ, maintaining our focus, strengthening our alliances, increasing the number of people we reach and what our immediate activities should be.
Our meeting included two very helpful in-person sessions:
Dr Rob Weinkove, one of NZ’s leading CLL experts and a pioneer in CAR-T cell treatment, spoke on current and future CLL management in New Zealand and what we can do to help, and Todd Stephenson, ACT MP, who works closely with David Seymour on Pharmac, Medsafe and related health matters, updated us on ongoing Pharmac changes and opportunities to advocate for improvements in medicines access.
See a summary of Rob’s talk here
As a result of this latter discussion, we are preparing a submission in support of the Medicines Amendment Bill which proposes to speed up the process whereby Medsafe approves medicines for use in New Zealand if they have been approved by two recognised overseas jurisdictions. The bill would also enable more flexible approaches to the prescription and administration of medicines so that patients can get access to the medicines they need more efficiently. Submissions are due on 19 May.
Clinical trials
Our page on clinical trials is now being updated regularly, most recently on 15 April, so keep an eye on these if this is of interest to you.
Participation
Our organisation would benefit greatly from an influx of new people either by joining our Facebook page or by registering on our website. Although our Facebook group membership has doubled in the last two years (to 227) we are still only reaching about 10% of New Zealanders living with CLL. It’s important for us to get more people involved, be they patients or caregivers, as that adds weight to our voice when we’re lobbying for access to new treatments etc. Word of mouth is probably our most effective way of getting the message across. If you know of others with CLL please advise them of either or both of these options – our website and our CLL Facebook page and group.
Finally, we’re in the process of refreshing and updating our website, so if you have any ideas on how we can make this more useful please do get in touch at: info@clladvocates.org.nz
Till next time…. Stay well.
Catherine Isaac
On behalf of the Trustees
CLL Advocates NZ