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.
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
Meeting with the new Acting CEO of Pharmac
On Friday 11th April 2025 Catherine Isaac, Chair of CLL Advocates NZ and Dr Ruth Spearing, Trustee, met with the new Acting CEO of Pharmac, Brendan Boyle along with the Chief Medical Advisor, Dr David Hughes and the Director of Pharmaceuticals, Geraldine MacGibbon. The aim of the meeting was to follow up on some of the issues that had been raised when Catherine and Ruth had met with Hon Paula Bennett, Chair of Pharmac and her colleagues, along with other members of the Blood Cancer Alliance, back in October of last year.
The major topic was whether Pharmac had made progress with the possibility of working with Health NZ where there was the potential for a particularly valuable nationally run trial which was not possible because of one drug not being funded. Pharmac has in the past enabled the previous DHBs to purchase such a drug enabling a very successful trial for Acute Myeloid Leukaemia to go ahead and is funding a couple of supportive care drugs for the CAR-T cell trials being run out of the Malaghan Institute. Trials will often not only offer cutting edge drugs to patients with great results but will also potentially save Health NZ a considerable amount of money. Unfortunately, the system is so siloed at the present time that this potential partnership between Pharmac and Health NZ does not occur and the huge benefits that could be realised, are lost.
As a result of our meeting and follow-up on this, David Hughes has undertaken to meet with Debra Matich from the Service Improvement and Innovation Directorate of Health NZ in early May to discuss this concept further.
Another topic that was covered was the time it has been taking to get minutes of meetings out - sometimes in excess of five months. The CEO apologised for this and undertook to ensure that the key decisions would be out within six weeks of the meeting and the full minutes within three months. The CEO was congratulated on the effort he had already made in the two weeks that he had been in post to engage with patient groups.
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
‘New Zealanders are dying’: Specialist’s plea for blood cancer drug funding
Pharmac on Thursday opened consultation on allowing asthma patients easier access to inhalers - which if approved would exhaust the record $600 million cancer drug investment announced last year.
But there are already calls for the Government to stump up more.
Blood cancer patients weren’t covered by the promise and 59 haematologists - almost all the blood cancer specialists in the country - have signed a letter to the Government urging them to take urgent action on funding blood cancer medicines in this year’s Budget.
Haematologist Rodger Tiedemann has seen too many patients he can’t adequately help due to a lack of funding.
Read the article here: https://www.stuff.co.nz/politics/360658687/new-zealanders-are-dying-specialists-plea-blood-cancer-drug-funding