28 April 2022


The Cancer Control Agency’s analysis of the gap between Australia and New Zealand in funding 18 selected medicines with substantial clinical benefit is a welcome way of drawing attention to the plight of NZ cancer patients desperate for treatments that are funded across the Tasman, but not here, says Myeloma NZ Chief Executive Dr Ken Romeril.

“It’s good to see the Agency weighing in on this issue, but their findings are not news to anyone involved in cancer treatment, and this kind of analysis is surely part of Pharmac’s job in evaluating medicines.

Dr Romeril said the release of the report raises a number of important questions:

  1. Why is it necessary for another government agency within the Ministry of Health to spend what must be a very large amount of money on work that should be done by Pharmac, and might have been better spent on funding medicines?
  2. How does the release of this report fit with the withholding of the final report of the Independent Pharmac Review Panel?
  3. What has become of the Review Panel’s report, which must surely examine whether Pharmac’s model and methodology is keeping NZ in step with the rest of the world in terms of access to modern medicines?
  4. How does this list of 18 ‘gold standard’ medicines line up with Pharmac’s Options for Investment list of 78 medicines?

Dr Romeril said the most important question is what this report might mean for those NZ cancer patients who right now are struggling with desperate and severe unmet need for treatment.

“In that regard a further concern I have about this report is that it reinforces the idea that there are only two types of treatment: curative and life-extending.  That is a crude distinction and sows the idea that funding a medicine that extends life by a short time is not worthwhile.

“In fact many cancers have been cured in our lifetime. And for a number of cancers there are cures on the horizon, with life-extending treatments often becoming the bridge that keeps the patient alive and well until the next breakthrough or the cure has arrived.

“Approaches to treating multiple myeloma are a good example of this point. Transformative, life-extending treatments have been available and funded throughout the Western world for several years. And a cure is in fact in sight. But in NZ myeloma is one of the most neglected areas in terms of access to new treatments, with no new treatments having been funded for in NZ for the past 7 years”, said Dr Romeril.

Myeloma patient and young mother Nichola Oakenfull says seeing the Agency’s report just highlights the pain of her predicament.

“It’s pretty demoralising as a patient to read the report talking about curative and non-curative cancers. It feels like we are cast aside because there is no cure for us.

“There’s no cure for diabetes. But we accept the cost of continuing to treat diabetics as the right thing to do. Should we decide not to treat them because they are going to die anyway?

“Overseas, people with my cancer are living long and productive lives because they have access to drugs that manage their cancer for long periods, and when one drug stops working they move to the next option. Here in New Zealand we only have two lines of treatment for transplant eligible patients, and then it’s game over.

“As shown in the report, Australia has carfilzomib, daratumumab and pomalidomide funded for myeloma, while these three are not funded in New Zealand at all.  These are not fancy, new, unproven drugs. They are standard of care overseas. People are shocked when I mention in international groups that we don’t have these medicines here in NZ.

“The Malaghan Institute in Wellington is doing amazing work with CAR T-cell trials.  I want to be around for when they start using them for myeloma patients.

“I have an eight year old son I need to stay alive for, but I potentially won’t with the currently approved drugs.  Knowing that it could all be so different if I lived across the Tasman is honestly heart-breaking, and so unfair”, said Ms Oakenfull.

Dr Romeril said Myeloma NZ was disappointed that blood cancers had not been included in the report, but noted that the Agency intended to produce a separate report on these.

“We will look forward to that with great interest,” said Dr Romeril.



For further information:

Dr Ken Romeril

Chief Executive, Myeloma NZ

0274 432 624


Nichola Oakenfull

Patient, and Trustee, Myeloma NZ

027 454 9682


Joy Wilkie

Patient, and Trustee, Myeloma NZ

027 415 5460

Myeloma New Zealand

PO Box 25162, Wellington 6011

Registered Charity  CC53924


Myeloma New Zealand focuses specifically on multiple myeloma and improving the lives of patients affected by it. Our mission includes campaigning for the best patient care, gaining new, improved treatments, and enabling support for affected families.


Around 360 New Zealanders are diagnosed with this form of blood cancer every year. Myeloma New Zealand wants to provide support and information to help them and their families and loved ones to understand the myeloma ‘journey’ from diagnosis to treatment. We want to help them through the milestones they may encounter along the way and the likely options and choices they may have.  But most importantly, we want to help beat this cancer by identifying and supporting strategies and research initiatives that will both improve the quality of life of those living with myeloma and extend their lives.

Our Advocacy Priorities for 2022 - CLL Advocates April Newsletter

Our Advocacy Priorities for 2022

CLL Advocates April 2022 Newsletter


April 2022


Dear Friends,


The year is well under way, and we’re firmly focused on where we need to direct our energies and resources this year.  We’ve agreed on the following as the key priorities for improving outcomes for CLL patients:

  1. Access to new treatments, notably BTK inhibitors, for relapsed CLL
  2. Reform of first line therapy
  3. Equitable access to clinical trials of unfunded CLL treatments
  4. The availability in NZ of testing to identify the IgVH mutation
  5. Prevention and management of infections in CLL patients, and
  6. Prevention or early detection of secondary malignancies in CLL patients.

As well as these CLL specific goals, we want to pursue the broader goal of achieving an effective, more meaningful patient voice in medicines funding decisions in NZ. (More on this in a future newsletter).

This is an ambitious agenda!  And we are a very small group, but we believe with your engagement and support, and the help of our donors, we will be able to make some headway.

We have a workplan for the year, and early on in the agenda is a series of patient focus groups to identify the specific issues of most importance to you, and how we can best help you with these. We’re also keen to hear any experiences you’ve had that can help us focus our advocacy efforts effectively.

These would initially be small groups of, say, four to six, and would be on Zoom, depending on the Covid environment and geographic constraints. They would be facilitated, friendly, café style discussions. Caregivers and family members would also be welcome.

We will get in touch with you soon to set up these discussions, but in the meantime please can you get in touch with us at to let us know if you’re interested.


Help required!

We’re also still greatly in need of help to keep CLLANZ going, so if there’s any task you’re willing to take on, no matter how small, please let us know!


Best wishes

CLL Advocates NZ Trustees

Pharmac Review Panel Interim Report

Decision on access criteria for oral COVID-19 treatments:

The Access Criteria for the oral antiviral COVID-19 treatments, nirmatrelvir with ritonavir (Paxlovid) and molnupiravir (Lagevrio) has been announced.

These Access Criteria have been developed with the advice of our clinical expert advisors. Supply of the oral treatments will be arriving throughout 2022 and the criteria have been designed to help support prescribers to target available supply to those most in need and most likely to benefit. The evidence continues to change quickly in the COVID-19 treatment space and we will continue to review the criteria and consider any changes as required.

Approvals are valid for patients where the prescribing clinician confirms the patient meets the following criteria and has endorsed the prescription accordingly.

For more information please click on this link:


Added support for use of Brukinsa in relapsed or refractory CLL/SLL

An interesting study on a drug, Brukinsa that is not yet in New Zealand, although we and Australia had 9% of patients enrolled in the trial. Hopefully the drug will make it to New Zealand at some stage in the future.

"China-based biotech BeiGene (HKEX: 06160) has announced results from the Phase III ALPINE trial showing BTK inhibitor Brukinsa (zanubrutinib) demonstrated superiority versus ibrutinib in overall response rate (ORR) as assessed by an Independent Review Committee (IRC) in adult patients with relapsed or refractory (R/R) chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL).

A total of 652 patients were enrolled in the ALPINE trial across:

Europe (60%) ; USA (17%) ;  China (14%) ; New Zealand and Australia (9%) and were followed for a median of 24.2 months. The next planned analysis of ALPINE data will be the PFS final analysis.

Brukinsa, which is cleared in markets such as the European Union, USA, China, Brazil and Canada for the treatment of marginal zone lymphoma (MZL) and mantle cell lymphoma (MCL) in some markets.

BeiGene has submitted results from the ALPINE trial in support of marketing authorization applications for Brukinsa in CLL in the USA, EU and other markets around the world. In February 2022, BeiGene announced that the US Food and Drug Administration and European Medicines Agency have accepted supplemental new drug applications for Brukinsa in CLL".

For more information on the trial, please click on this link: Added support for use of Brukinsa in relapsed or refractory CLL/SLL (

Blood type may predict which cancer patients are prone to clots

Cancer and its treatments increase the risk for venous thromboembolism (VTE). That includes deep-vein thrombosis (DVT, a blood clot that typically forms in the deep veins of the leg) and pulmonary embolism (PE, a life-threatening condition that occurs when a blood clot breaks free and travels to the lungs' arteries).

Factors such as tumours or cancer types are now used to identify cancer patients at high risk of VTE, but many go unidentified. This study concluded that cancer patients with non-O blood types, such as types A, B and AB, are at increased risk for VTE.

For more information please click on the link: Blood Type May Predict Which Cancer Patients Are Prone to Clots - Consumer Health News | HealthDay

COVID-19 information for patients and whānau with cancer.

This link here: Te Aho o Te Kahu – Cancer during COVID-19 contains information for patients and whānau with cancer. Cancer treatment continues at all phases of the Ministry of Health’s Omicron Response Plan.

Pharmac Review Final Report – Update

In a radio interview today, Health Minister Andrew Little said the final Pharmac Review report will be publicised “in a matter of a few weeks.”

The Pharmac Review panel was expected to hand over the final report to Minister Little by 28 February 2022 – he received it last week.

Click below to listen to the interview on 95bFM The Wire. Fast forward the audio recording at the bottom of the page to approximately 10 minutes to hear Andrew Little speak about the report.

The Wire with Joe and Emilia: March 10, 2022 | 95bFM

CLL Advocates Network´s March Newsletter

The CLL Advocates Network´s latest newsletter (March edition) where the first article is on the “International COVID-19 Blood Cancer Coalition" (ICBCC).

You can access the newsletter HERE.

There is also a page with ICBCC Success Stories and Access News.

In this section you will find a list of success stories that have been reported to the ICBCC following the launch of the International COVID-19 Blood Cancer Coalition´s (ICBCC) Joint Patient Impact Statement on 21 February 2022.

Let me take the opportunity to remind you of our next Coalition Update Meeting which is taking place this Thursday 10 March from 18:00-19:30 CET / 5:00-6:30 GMT.

Here is the Zoom link for those who wish to join:

Join Zoom Meeting

Meeting ID: 884 3681 3708
Passcode: 669124

On behalf of: Nicole Schroeter

International COVID-19 Blood Cancer Coalition (ICBCC) Secretariat

Endorsers of the ICBCC Patient Impact Statement

Last Thursday 24 February the ICBCC Policy Strategy Working Group met to discuss on the Policy Strategy to address the specific impact of the pandemic on immunocompromised blood cancer patients (both acute and chronic) in a workshop-style setting. The meeting was facilitated by our partner Patvocates.

During the 2 hour workshop the group managed to define the actionable objectives from the impact statement and define the primary stakeholders and the level of lobbying needed (international/country level) for each of the objectives. In order to finalise the policy strategy and prioritise the creation of the tools and with the aim of eliciting a broad representative sample, we want to ask all statement endorsers to please vote their top 5 priorities when it comes to objectives. You can do this by adding votes in the Online Tool Groupmap which you can access via the following link: submit your votes by end of business Thursday 3rd of March.

As final step, we ask you as well to add suggestions on which tools you would consider most useful for you for each of the actions (template letters, social media images, flyers, etc.). To do so, you can add comments in each of the boxes.

Your input will help us provide tools that really suit your needs.

 We thank you in advance for your speedy response to the above request!

On behalf of the CLLAN Steering Committee and the International COVID-19 Blood Cancer Coalition" (ICBCC)

CLLANZ trustees present to Pae Ora Committee

On 8 February CLL Advocates trustees appeared before the Parliamentary Select Committee that is considering the draft Pae Ora legislation that will establish the new health system. Watch it here and see our full submission here