CLL Advocates Pharmac Submission
CLL Advocates NZ has made a formal submission to Pharmac supporting the proposal to fund two time‑limited treatment combinations for first‑line CLL care: Venetoclax with Ibrutinib, and Venetoclax with Obinutuzumab.
This represents an important step toward giving New Zealanders access to modern, internationally recognised therapies. Our submission welcomes the proposal, outlines several refinements to ensure equitable access for patients who have been self‑funding treatment, and highlights the need for flexibility where side‑effects or clinical circumstances require alternative options.
Here is a link to the submission: CLL Pharmac Submission
Here a link to the flowchart for the Proposed Funded CLL Treatment Pathway: Treatment Pathways
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
Expressions of Interest for CLL Advocates positions
These are exciting times for our CLL community as the 'patient voice' becomes an essential factor in determining which drugs receive funding here in New Zealand. We are currently seeking at least one more patient trustee to join our team. While the time commitment is minimal, a strong passion for our cause is highly valued.
At our recent CLL Advocates Trustees meeting, we decided to establish a patient working group, which Diane Ward, a CLL Advocates Trustee, is enthusiastic to lead. This initiative aims to enhance patient input in our advocacy efforts.
World CLL Day is on September 1, a day that holds significant meaning for all of us. We need your support to spread these important messages to as wide an audience as possible. If you are interested in becoming a trustee or a member of the working group, please complete the form below and submit it by 10th August 2024.
Expressions of Interest for CLL Advocates positions
Incidence of Non-Melanoma Skin Cancers in Patients with CLL: A Retrospective Study in Bay of Plenty New Zealand Population
CLLANZ provided some assistance for a research project to be done as a summer studentship, by then fifth year medical student, Andrew Weston, on “second primary malignancies in NZ CLL patients”.
Here is the link to the abstract published at the 63rd ASH (The American Society of Hemotology) Annual Meeting.
Second primary malignancies are important in CLL, where the impaired immune system is not as able to deal to developing malignancies as people with normal immune systems can. As a consequence, about one third of CLL patients die of a second primary malignancy, such as melanoma, colon cancer, and pancreatic cancer. Some of these cancers have well-recognised screening procedures to detect early stage cancers, which can have a better outcome to treatment then, compared to when they are picked up when symptoms develop.
Regular skin checks, and colonoscopy are two good examples of this screening approach.
MyLifeMatters campaign: find an event near you
MyLifeMatters is a collective of patient advocate organisations representing more than 1 million patients with cancers, rare disorders, diabetes, and other life limiting conditions calling for the New Zealand Government to tackle the issue of investment and timely access to new and breakthrough medicines for the people of New Zealand.
At the heart of this campaign lies a shared vision: a New Zealand where every Kiwi patient has the opportunity to lead a healthy life, unhindered by poor investment, and access to life-saving medicines that are available in other countries.
Through awareness, your advocacy, and courage, we aim to shape a brighter tomorrow for patients in Aotearoa.
Please find out how to take action here: My Life Matters Event Dates