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

https://clladvocates.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


Perspectives on current and future CLL management in New Zealand by Prof. Dr Robert Weinkove 11 April 2025

Perspectives on current and future CLL management in New Zealand

A presentation by Prof. Dr Robert Weinkove, Haematologist at Wellington Hospital and Clinical Director at the Malaghan Institute.

Dr Weinkove was invited by the CLLANZ Trustees to join our strategic planning workshop held last week in Wellington to present his perspectives on current and future CLL management in New Zealand.

The following is a summary of his presentation:

  1. Pharmaceutical expenditure in NZ is relatively low compared to some other countries (e.g. Australia, the UK, the USA), and that NZ haematology services and Day Units are under pressure. He highlighted the July 2022 Te Aho o Te Kahu (Cancer Control Agency) report, “A vision for cancer treatment in the reformed health system”, which described a doubling of systemic anticancer therapy dispensing between 2011 and 2020. He also noted that due to population changes projected by Stats NZ, particularly a growing number of people > 65 years in the coming decades, the incidence of CLL can be expected to rise significantly.
  2. PHARMAC’s mandate requires them to contain medicine costs, and that for CLL this might favour fixed-duration therapies. PHARMAC will also consider other factors, such as hospital resources saved and equity of access, in their funding decisions. He noted that PHARMAC is not necessarily restricted to funding medicines within their formal license – for example, first-line venetoclax for TP53-disrupted CLL and obinutuzumab for relapsed CLL are both ‘off-label’ but are PHARMAC-funded. Pharmaceutical companies may be unwilling or unable to request PHARMAC reimbursement for off-label indications, but clinicians or patient groups can make applications for PHARMAC funding in these situations.
  3. Funding criteria are sometimes widened during PHARMAC consultations, citing the removal of the requirement for relapse within 36 months for PHARMAC-funded VenR for CLL, which was adopted during a recent consultation for venetoclax for AML.
  4. International 1st line CLL treatment recommendations from various organisations including ESMO, BCSH and the NCCN, either do not recommend chemoimmunotherapy at all, or restrict chemoimmunotherapy recommendations to FCR for fit CLL patients with mutated IGHV (and even then FCR is not the top recommendation).
  5. The European 2024 ESMO CLL recommendation which states, “…chemoimmunotherapy such as fludarabine–cyclophosphamide–rituximab (FCR) should only be considered for patients with a good genetic risk profile [defined as mutated immunoglobulin heavy chain variable (IGHV) status and no TP53 aberrations] and a non-complex karyotype and if targeted therapies are not reimbursed.” – and the IGHV mutation status test is not currently available in NZ.
  6. Australasian CLL treatment guidelines (last issued in 2023) are currently being reviewed, and the next update is also likely to recommend against chemoimmunotherapy.
  7. Data from the GLOW and FLAIR trials, found that ibrutinib & venetoclax is superior to chemoimmunotherapy (obinutuzumab/chlorambucil or FCR, respectively) in terms of progression-free survival (PFS).
  8. While FCR and ibrutinib/venetoclax had similar PFS within the subgroup of patients with mutated IGHV (N Engl J Med 2024; 390: 326-37), it may take many years (e.g. a decade or longer of follow-up) to know whether or not the two treatments result in differences in durable response rate within this subgroup. He noted that the fraction of patients this represents is low – only approximately 20% of patients getting first-line CLL therapy in NZ are likely to be (A) fit for full-intensity FCR, and (B) have IGHV mutation, and (C) lack TP53 mutation/disruption. He noted that there are now prospective clinical trial data suggesting that FCR is associated with a higher risk of secondary cancers than the newer targeted therapies such as ibrutinib and venetoclax. He felt that while there is equipoise in terms of efficacy of FCR versus ibrutinib/venetoclax for this group at present, many experts internationally feel that selecting a therapy of known carcinogenicity for this subset of fitter younger patients may not be appropriate.
  9. Data from a recent manuscript indicates that Māori have a higher age-adjusted incidence of CLL, and a higher CLL-specific mortality, than do Europeans in New Zealand (Cancer Epidemiology 2024; 93: 102656. doi:10.1016/j.canep.2024.102656). He noted that the July 2022 Te Aho o Te Kahu (Cancer Control Agency) report included a section on access barriers for Māori and specifically recommended systemic anticancer therapies that can be self-administered (e.g. oral therapies), to allow treatment closer to home.
  10. In terms of funding gaps in CLL treatments in New Zealand, the lack of funded first line targeted (non-chemotherapy-based) treatments is a major deficit.

Dr Weinkove’s personal view on priorities for funding of CLL treatments in NZ is as follows:

    1. Priority 1 (most urgent): First-line fixed-duration venetoclax and ibrutinib for all patient groups. Alternatives to venetoclax/ibrutinib could be obinutuzumab/venetoclax (but this requires intravenous administration, with Day Unit and Inpatient Ward resource implications), or venetoclax with a 2nd generation BTK inhibitor.
    2. Priority 2 (urgent): A funded treatment for patient's refractory to both venetoclax and a BTK inhibitor. This is likely to represent a growing group with high unmet need. Non-covalent BTK inhibitors (e.g. Pirtobrutinib or Nemtabrutinib) or BTK degraders (e.g. BGB-16673) appear to be very effective oral treatments in this setting.
    3. Priority 3 (strong preference): Funding of an alternative (2nd generation) BTK inhibitor instead of ibrutinib (e.g. Zanubrutinib or acalabrutinib), since these agents offer lower cardiac toxicity +/- improved efficacy.
    4. Other options (not as urgent but would offer benefits for many patients): Option of VenR re-treatment (would defer some non-covalent BTKi demand, see Priority 2); Option of a first-line continuous BTK inhibitor for frailer patients instead of fixed-duration venetoclax & ibrutinib; Choice between VenR or a continuous BTK inhibitor at first relapse.

Dr Weinkove:

  • noted that others might express different priorities
  • reported that he has participated in Advisory Boards, and/or acted as a speaker for, Janssen, Abbvie, MSD and BeiGene within the past 3 years.

CLL Advocates Facebook Group

Join the CLL Advocates Community – Support, Knowledge & Connection

The CLL Advocates private Facebook group is a dedicated space for individuals affected by Chronic Lymphocytic Leukaemia (CLL).

Whether you're newly diagnosed, undergoing treatment, a caregiver, or simply seeking reliable information, this group is here to offer support, shared experiences, and up-to-date insights.

We’re building a stronger, more informed community - but we need YOU! Connect with others, exchange knowledge, and be part of a network that empowers and advocates for better CLL care.

Join today and be part of the conversation. Together, we make a difference!

For more information please email: clladvocates@outlook.co.nz


Take a look at our CLL DIAGNOSIS & TREATMENT PATHWAY IN NZ

 

This flow chart outlines the diagnosis and treatment pathway for Chronic Lymphocytic Leukaemia (CLL) in New Zealand, including the staging process, risk assessment, and available treatment options.

Key Points:

  • Diagnosis & Staging: Initial testing includes full blood count (FBC), immunophenotyping, and cytogenetic testing. Staging methods include Binet (used in NZ, UK, and Europe) and RAI (used in the US) to assess disease extent.
  • Treatment Pathways:
    • First-Line Treatments: Options vary based on patient fitness, including chemo-immunotherapy (FCR, Bendamustine-Rituximab) and targeted therapies like Ibrutinib, Idelalisib, and Venetoclax for certain genetic mutations.
    • Second-Line Treatment: Requires a different approach from the first-line therapy and includes targeted therapies, stem cell transplantation, radiotherapy, and corticosteroids.
  • Watch & Wait: For patients with stable disease, monitoring includes regular blood tests, skin cancer tests, physical exams, psychosocial support, and fatigue management.
  • Clinical Trials: Some new treatments being explored include CAR T-cell therapy, cyclin-dependent kinase inhibitors, histone deacetylase inhibitors, and second-generation BCR/BCL-2 inhibitors.
  • Funding Status: Certain treatments are funded in NZ, while others remain unfunded.

Season’s Greetings from CLL Advocates

As we approach the festive season, we want to take a moment to wish you and your families the very best for the holidays.

We hope that you are finding comfort in the support around you during this special time of year.

Your support and involvement in the CLL community mean the world to us, and we look forward to continuing our shared journey in 2025.
We are working on several updates and initiatives, and we aim to send out a full newsletter early next year with all the latest news and developments.
In the meantime, please take care, and we hope the season brings you peace, happiness, and moments of joy.
Warm wishes,

The CLL Advocates Team


Understanding IGHV Mutational Status in Chronic Lymphocytic Leukaemia (CLL)

This document here, IGHV Mutational Status Testing in Chronic Lymphocytic Leukaemia explains the role of IGHV mutational status testing in CLL and its impact on treatment in the New Zealand therapeutic landscape.

The IGHV mutational test checks how much the DNA in a specific part of the immune system's gene has changed in a group of Chronic Lymphocytic Leukaemia (CLL) cells compared to normal, healthy DNA. This helps doctors understand how the cancer might behave and what treatment options are best.

IGHV mutational status is a factor in determining the prognosis and treatment options for patients with Chronic Lymphocytic Leukaemia (CLL). Testing for IGHV mutations helps classify CLL into two categories: mutated or unmutated, influencing both the disease’s progression and response to therapy. This valuable information aids doctors in creating personalised treatment plans, improving patient outcomes.

Introduction to IGHV Mutational Status Testing in CLL

This paper here, IGHV-Mutational-Status-Testing-in-Chronic-Lymphocytic-Leukemia.pdf explores in greater depth the role of IGHV mutational status as a biomarker in chronic lymphocytic leukaemia (CLL). By predicting patient outcomes and informing treatment choices, IGHV testing helps guide decisions between chemoimmunotherapy and novel therapies.


Cancer Control Agency releases analysis on funding of cancer drugs in Aotearoa

A new report, Understanding Blood Cancer Medicine Availability in Aotearoa New Zealand, has been released, examining the disparities in publicly funded blood cancer medicines between Australia and New Zealand.

This follows the 2022 report Understanding the Gap, which analysed the availability of general cancer medicines in Aotearoa.

Key findings from the 2024 report show that, as of January 2024, 24 blood cancer medicines were available in Australia but not in New Zealand, covering 42 treatment indications. Among these, 12 had substantial clinical benefits, including two intended to cure blood cancer.

However, since the report was conducted, Pharmac has funded four medicines, reducing the gaps to 36.

The report identifies remaining gaps for cancers such as acute lymphoblastic leukaemia (ALL), acute myeloid leukaemia (AML), and chronic lymphocytic leukaemia (CLL), and mentions Pharmac's ongoing considerations to fund some of these treatments.

You can find a full and summary version of the report, along with frequently asked questions on their website


Advocating for Better Access to Modern Medications for CLL

CLL Trustee, Dr. Ruth Spearing features in this One News interview explaining why New Zealand lacks funding for modern medications, which restricts access to the latest treatments and prevents the country from meeting international standards of care.

Although Pharmac, New Zealand’s drug-buying agency, recently expanded access to certain blood cancer treatments, it operates under a constrained budget.

New Zealand's spending on medicines is less than a third of what other countries invest.

The call is for more funding to improve access to updated treatments and reduce long-term healthcare costs.

Jodie White, who was diagnosed with chronic lymphocytic leukaemia, shares her experience of moving from chemotherapy to a clinical trial for a new treatment that has no side effects, dramatically improving her quality of life.

We are grateful to Ruth and Jodie for advocating to improve treatment options for CLL.

https://www.loom.com/share/17ee4a215fba4868a42f887961b627f6?sid=3b4774e9-9897-412a-9f27-b07268667629