CLL Advocates June Newsletter

24 June 2022

Our Thoughts at Matariki

Mānawatia a Matariki

We feel it’s appropriate on this special day to remember and celebrate the life of the founder of CLLANZ, Dr Neil Graham. Neil was a very generous, energetic, and compassionate human being who gave his time freely to help improve the lives of New Zealanders living with CLL. His work helped create a ‘community’ of CLL patients, through his personal engagement with patients, creation of the ongoing private CLL Advocates Facebook Group, and production of the first dedicated CLL Patient Booklet for New Zealanders.  With a relentless focus on advocating for access to CLL treatments, Neil also raised the profile and understanding of CLL among politicians, Pharmac officials and other policy decision makers. He played a vital role in gaining funding for venetoclax.

Looking to the future, as is also appropriate on this day, the fight for better treatments goes on. In particular, after all these years of waiting, we’d like to see funding for ibrutinib for patients in need of it. But at this stage there’s no sign of any progress on that.  While we welcome the release (finally!) of the Pharmac Review Panel report, we’re not greatly confident that it will lead to real change in the nature, speed, and transparency of Pharmac’s decision-making processes.  After a three-month delay, releasing the report on the day Prime Minister Ardern met President Joe Biden suggests the Government may not have wanted it to get much attention! We have noted a change in Pharmac’s language but are keen to see some meaningful change in their processes.

We’re very pleased to say that CLLANZ Trustee Dr Gillian Corbett (see her bio Dr Gillian Corbett) has agreed to take on the role of Medical Director of CLLANZ.

You can contact her at:

Gillian will be able to lead or advise on our advocacy activities, but we are still looking for help to progress the priorities we outlined in our last newsletter. Please do get in touch with us if you can help in any way.

We hope you’re having a happy Matariki with family and friends, and we send our warmest thoughts and wishes to Neil Graham’s family and our thanks for all he did for New Zealanders living with CLL.


CLLANZ Trustees

Pharmac Report - Final Review

The Pharmac report has been released.

Dr Andrew Little has advised that:

“The panel found Pharmac’s model has delivered significant benefits, but to achieve its purpose these benefits need to be shared more equitably across our communities, especially for Māori and Pacific peoples,” Andrew Little said.

“As a result of this Review, Pharmac will have a much greater focus on improving the health of Māori, Pacific peoples, disabled people and other groups who do not yet share equitably in the benefits Pharmac provides.

“Pharmac has confirmed to me that it accepts the Panel’s findings. Pharmac is committed to making the needed strategic and operational changes, and already has work underway to do this.

“The panel made 33 recommendations and the government agrees in principle with most of them. There is a small number of recommendations where the government takes a different view, for example where the health reforms will address the underlying issues now or in the future,”

What are your thoughts on the review?

Here is the link for the Pharmac Review.  Pharmac Review - Final Report

This is the Executive summary: Pharmac-Review-Executive-Summary.pdf

International COVID-19 Blood Cancer Coalition (ICBCC) - Patient Impact Statement and Recommendations

Protecting immunocompromised blood cancer patients during the COVID-19 pandemic

The coalition has prepared a Joint Patient Impact Statement for use in different countries to aid when advocating for the provision of anti-COVID-19 treatment and care for immunocompromised or immunosuppressed (IC/IS) blood cancer patients.

The Statement has to date been endorsed by networks and national organisations of the global patient advocacy community as well as renowned medical societies and representatives from the global clinical community .

There is a total of 71 endorsers to date including CLL Advocates NZ, Dr Gillian Corbett.






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