CLL Advocates March Newsletter
CLLANZ News
Since our last report to members your Trustees have been busy.
We attended our usual online briefings with Pharmac and the Blood Cancer Alliance and also spoke with Blood Cancer NZ to provide feedback on a State of Blood Cancer Report, which is scheduled to be released in Parliament this April.
More on these items later.
Ibrutinib + Venetoclax
Our biggest news in recent times has been the announcement by Pharmac that I+V will be a funded frontline treatment for treatment-naïve CLL patients with the expectation being that, on average, 80-90 people will benefit from this every year. This signals the end of chemo-immunotherapy (FCR) for all newly diagnosed patients.
It has, however, caused some anxiety among those CLL patients who have already been treated at least once. It is not yet clear what treatment options will open up for these people, and we will be seeking clarification from Pharmac.
We managed to get some good media coverage at the time.
We will also continue lobbying vigorously for treatments not yet available in NZ but available and funded in many other countries.
State of Blood Cancer Report
This is a comprehensive document which will be a useful source of information for some time to come once it is published. BCNZ is going through the final pre-production process now.
The Report will be a useful lead into the Election.
Election Campaign
A collection of Cancer NGOs plus organisations such as Myeloma NZ and CLLANZ is funding what will be a very slick campaign aiming to draw the public’s attention to the bareness of NZ’s medicine cupboard. We will provide further updates as the process takes shape.
Trustee News
Ruth Spearing, Haematologist, Christchurch has returned to the role of Chair following the sad death of her husband in early January. We sent a tribute to Ruth on behalf of you all.
Lisa Ryan, CLL patient, Auckland has taken the role of Deputy Chair.
CLLANZ Website
We’re working towards refreshing the CLLANZ website to improve usability and presentation, and we have funding applications underway to help make this possible. If you have skills in web design or development and would like to contribute, we’d be grateful to connect with you.
Global Survey
The Lymphoma Coalition has put together an international survey for people with lymphoma or CLL. This will help create information as to how New Zealand is doing compared to other countries. Where a country has more than 100 responses, the Coalition will collate the country’s data and send it back – in our case to Blood Cancer New Zealand, who we work very closely with on all sorts of issues. For the data to be meaningful – and therefore usable – for CLL, it would be great to have as many people as possible with CLL to respond to the survey.
Here is a link to the survey: lymphomacoalition.org/global-patient-survey/
Please note that the survey closes on 31 March 2026
It takes 20- 30 minutes to do the survey, depending on how many treatments you have had, so make yourself comfortable, make yourself a coffee, and thank you for filling it out!
Please feel free to pass it on to other people with CLL – or any form of lymphoma.
Data help us advocate more successfully so thank you for doing this!
Rob Crozier
On behalf of the Trustees CLL Advocates NZ