Blood Cancer Patients Urge Government to Honour Drug Funding Promise
In this RNZ Checkpoint segment, blood cancer patients, clinicians, and advocates speak out about the urgent need for the New Zealand Government to fund critical medications for blood cancers, many of which remain unfunded despite pre-election commitments.
Unfulfilled Commitment: The National Party pledged to fund cancer treatments for both solid tumours and blood cancers. While solid tumour drugs received funding after public pressure, blood cancer medications were excluded from Budget 2025.
Clinical Voices:
- Dr. Rodger Tiedemann, consultant haematologist at Auckland Hospital, describes the lack of funding as a “fundamental health policy failure.”
- He and 59 haematologists co-signed a letter urging the government to act, emphasizing that blood cancer patients rely solely on medication, unlike solid tumour patients who may benefit from surgery or radiation.
Patient Impact:
- Patients with chronic lymphocytic leukaemia (CLL), lymphoma, and other blood cancers are left waiting for access to treatments that are funded in dozens of other countries.
- Many are paying privately or going without, while Pharmac’s “options for investment” list continues to grow without action.
Advocacy in Action:
- CLL Advocates NZ and other groups are calling for transparency, urgency, and equity in cancer drug funding.
- The segment underscores the emotional and financial toll on families, and the need for government accountability.
🎧 Listen to the Full Segment here
Help Us Advocate for Better CLL Treatment Options in New Zealand
My name is Rob Crozier. I’ve been living with Chronic Lymphocytic Leukaemia (CLL) since 2001, and in October last year, I became a Trustee of CLL Advocates NZ.
I took on this role after years of correspondence with Hon Shane Reti regarding the urgent concerns of CLL patients. Unfortunately, despite his election campaign promise to fund additional blood cancer treatments, that commitment was abandoned following the formation of the Coalition Government.
This year’s Budget allocated an additional $604 million to Pharmac over four years. Yet, only 10–15 CLL patients are expected to benefit. New Zealand continues to rank at the bottom of the OECD for drug funding when adjusted for GDP per capita.
Around 250 New Zealanders are diagnosed with CLL each year. Most face chemoimmunotherapy (FCR or BR*) as their first-line treatment. While these regimens can be effective for some, they are physically taxing and carry a significant risk of secondary cancers, even for those fortunate enough to achieve long-term disease control. Access to newer, targeted therapies - now standard first-line treatments in many developed countries, is only available here after relapse.
We believe all CLL patients deserve better. Our goal is to ensure that New Zealanders have access to the same treatment options as those in Australia and other comparable nations. To achieve this, we need to amplify patient voices and bring our stories to the attention of politicians and the public.
Next year is an election year, and the time to act is now. We're already working alongside Leukaemia and Blood Cancer NZ, Patient Voice Aotearoa, and the Blood Cancer Alliance to drive this campaign forward.
How you can help:
🔹 1. We’re gathering insights from the CLL community to help advocate for better treatment options in New Zealand. If you're a patient or caregiver, we’d love to hear about your experience and the area you call home.
You can choose to:
- Complete our patient survey here, to help us understand broader needs and trends
- Or simply email us with your personal story, thoughts, or concerns - whatever you feel comfortable sharing: clladvocates@outlook.co.nz
If you're a patient, please include your year of birth, gender, and preferred contact method. This helps us build a clearer picture of our community while respecting your privacy.
🔹 2. Make a Donation: To participate fully in this campaign, we need financial support. If you're able, please consider donating to CLL Advocates NZ: CLL Advocates Give a Little. All donations are tax-deductible.
Together, we can push for change and ensure that every CLL patient in New Zealand has access to the best possible care.
Warm regards,
Rob Crozier Trustee
CLL Advocates NZ
*FCR: Fludarabine/Cyclophosphamide/R
Calling for New Trustees – CLL Advocates New Zealand
These are meaningful times for our CLL community, as the patient voice is now a key part of decisions around medicine funding in Aotearoa.
We're on the lookout for new trustees to help guide our work.
The time commitment is modest, but your passion and life experience are invaluable. Help us share these important messages far and wide.
If you're interested in becoming a trustee, please email: clladvocates@outlook.co.nz before 30 September 2025 to register your interest.
Thank you.
CLL Advocates Webinar in Recognition of World CLL Day
CLL Advocates Webinar
Please join us for a Special Webinar in Recognition of World CLL Day
To mark world CLL Day, we invite you to a compelling webinar featuring Dr Graeme Jarvis, Chief Executive of Medicines New Zealand.
Dr Jarvis will share practical insights into effective advocacy - how to move from being unheard to becoming unstoppable.
As Chief Executive of Medicines New Zealand, Dr Jarvis leads the industry association representing research-based biopharmaceutical companies in Aotearoa. The organisation advocates for the benefits of modern medicines as part of a high-quality public health system,
Webinar Details
Date: Monday, 1 September
Time: 6.00pm – 7.00pm NZST
To register: Please email clladvocates@outlook.co.nz to receive the Zoom link.
We look forward to welcoming you online.
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.
New Zealand’s lack of access to modern medicines
A new poll commissioned by Medicines NZ has ignited political debate over New Zealand’s access to modern medicines, revealing that many citizens feel lives are at risk due to underfunding.
Conducted by Perceptive, the survey of 992 people found that 43% believe the government should fund medicines “much more,” and nearly a third know someone who has paid out-of-pocket for unfunded treatments. Access to medicines is seen as worse than in countries like Australia and the UK, and 36% of respondents said increased funding would influence their vote in the next election.
The findings have prompted finger-pointing among political parties, especially as National previously campaigned on improving access to cancer treatments. Despite a budget boost for Pharmac, New Zealand still lags behind other developed nations, and the issue is expected to be a major election-year flashpoint
Please read the article here: https://www.stuff.co.nz/nz-news/360780977/lives-are-risk-new-poll-thats-sparked-political-debate-and-finger-pointing
Zanubrutinib remains unfunded in New Zealand
Zanubrutinib has been publicly funded and accessible for the treatment Chronic Lymphocytic Leukaemia (CLL) in Australia for more than two years, offering patients a targeted therapy option with proven efficacy and tolerability.
Its availability across the Tasman highlights the growing disparity in access to innovative blood cancer treatments between Australia and New Zealand.
In light of the Government’s failure to deliver on its pre-election commitment to fund blood cancer medicines, this is a clear priority for advocacy ahead of next year’s general election.
Read more here: https://healthtree.org/cll/community/articles/zanubrutinib-leads-in-covalent-btk-inhibitors?
Budget 2025 leaves blood cancer patients behind
Blood cancer patients and advocates are outraged after Budget 2025 failed to allocate new funding for life-saving medicines. Despite last year’s $604M boost for Pharmac, no additional resources have been provided - leaving thousands without access to vital treatments.
Leukaemia & Blood Cancer NZ, the Blood Cancer Alliance, and the Cancer Society warn that the government is simply "re-celebrating" old funding while ignoring a growing backlog of unfunded medicines.
Patients like Rob Crozier, 77, CLL Advocates Trustee, continue to pay thousands for private insurance, while experts call this a "fundamental health policy failure" leading to avoidable deaths.
New Zealand ranks among the worst in the OECD for access to modern medicines. Advocacy groups demand urgent action - blood cancer patients cannot afford another year of waiting. #FundCancerMedicines #Budget2025Fail #NZHealthCrisis
Read more of the article here: https://www.rnz.co.nz/news/national/561987/budget-2025-leaves-blood-cancer-patients-behind
No funding for new blood cancer drugs in the foreseeable future
Rob Crozier, Trustee, sat in on the Budget yesterday in the faint hope that the Government would keep National’s promise to fund new cancer drugs. Rob was invited to join a group convened by Malcolm Mulholland of Patient Voice Aotearoa. We were all bitterly disappointed!
The Budget projects out for 4 years and there is no intention to fund new blood cancer drugs.
Rob spoke to Radio NZ yesterday and posted the following comment on both Stuff and NZ Herald websites:
“There is nothing in this budget for new blood cancer drugs. A promise was made to fund 13 new cancer drugs during the 2023 election campaign. In 2024, 13 of these drugs were funded - however they were all for solid tumours. Shane Reti, then Minister of Health, said that decisions on blood cancer would be delayed until the Cancer Control Agency had reported. They did so in October 2024. There are 24 blood cancer drugs funded in Australia that are not funded here. The absence of any increase for blood cancer drugs simply extends the broken promise made soon after the election”.
CLL Advocates Submission to the Health Select Committee on the Medicines Amendment Bill
Introduction
This submission is made by CLL Advocates NZ, an organisation representing the interests of Chronic Lymphocytic Leukaemia (CLL) patients and their families.
In New Zealand, approximately 2,800 people are diagnosed with blood cancer each year. This number encompasses leukaemia, lymphoma and myeloma. Leukaemia accounts for around 700 cases annually — the majority of these being CLL.
Part 1. Consent to distribute medicines by verification
We welcome this Bill and believe its introduction to be long overdue.
Implementing the proposed changes will speed up the verification pathway for medicines to be approved by Medsafe for use in New Zealand — reducing the time frame from as long as 2 years to 30 days where a particular medicine has already been approved by 2 recognised jurisdictions.
This will be of immense benefit to blood cancer patients who may be able to access medicines recommended by their haematologist, but which have not yet been funded by Pharmac. Regrettably, though, this access will only come about through self-funding, Give-a-Little pages, or health insurance where applicable.
There are many new drugs under development as CLL is the most common blood cancer world-wide and we therefore hope that this proposal might lead to a speedier process for such drugs to be funded by Pharmac. This will, of course, require political will along with appropriate funding for Pharmac.
As an aside, we urge the Government to give greater recognition to the fact that most of the new blood cancer drugs are self-administered at home leading to offsetting savings in the hospital system as fewer people need to be accommodated in Medical Day Wards occupying chairs and nurses’ time.
Part 2. Other amendments
Here we focus only on aspects of the Bill which directly impact blood cancer patients.
Nurse Practitioners: We welcome the proposed change whereby other medical professionals such as nurse practitioners will be able to prescribe approved medicines. We consider this to be of potential benefit to people living in rural areas but would caution that such approvals should only be made in consultation with a suitably trained medical specialist.
Funded Alternative Medicines: We welcome the proposal to allow the prescribing of alternative drugs listed on Pharmac’s pharmaceutical schedule when other funded drugs are in short supply.
Section 29: Again, we welcome the overall thrust of what is being proposed here. It is sometimes necessary to prescribe unregistered medicines for compassionate or other reasons and these amendments seem to facilitate that.
The proposed requirement for the importer or manufacturer to carry more of the burden of reporting on the prescription of unregistered drugs will also lighten the bureaucratic workload of our hospital specialists.
We are pleased that the proposed amendments do not appear to add impediments or burdensome reporting requirements to the prescription of off-label drugs. Off-label prescription is becoming increasingly important as the new generation drugs are able to target subgroup malignancies.
Here is the link to the Medicines Amendments bill: Medicines Amendment Bill
May 16 2025