News Type: CEO News

Blood Cancer Patients urge the Government not to forget them, in an open letter.

Patients Sign Open Letter Urging Prime Minister to Honour Promises on Blood Cancer Medicine Funding

More than six hundred patients from across New Zealand have signed an open letter, sent to the Prime Minister’s office yesterday afternoon, calling for action on pre-election commitments to fund cancer medicines.

The letter, penned by blood cancer patient Elvin Tibbs, expresses a growing frustration over unfulfilled promises to address the disparities in medicine access between New Zealand and Australia, referencing the Understanding Blood Cancer Medicine Availability in Aotearoa report recently released by the Cancer Control Agency.

In his role as National’s health spokesperson, Shane Reti stood beside Chris Luxon when announcing their pre-election cancer medicines policy and assured blood cancer patients that they would not be overlooked in efforts to improve access to modern medicines. “We understand, we haven’t forgotten you… we just need that piece of work to be done by the Cancer Control Agency.”

With the report released, the Health Minister and Prime Minister are yet to explain how they will deliver on their commitments. The open letter asks for immediate action.

“This report brings to light the harsh reality that life-saving blood cancer medicines remain unfunded in New Zealand while readily available to patients in comparable countries. For those of us with blood cancers, medicines present our best opportunity for survival, underscoring the devastating impact of this disparity. With the report’s findings now public, we implore you to act immediately to bridge this gap and fulfil the commitments you made to our community.”

The report reveals that many treatments considered standard elsewhere in the world are inaccessible to Kiwis due to underfunding of Pharmac by successive governments. This leaves blood cancer patients in New Zealand with limited options to extend their survival. The co-signed letter highlights that “Every day without access to medicines is a day that brings preventable suffering and reduced quality of life.”

The letter closes with an appeal to the Prime Minister: “We are simply asking you to deliver on your commitments; for the same chance at life that patients in comparable countries already receive.”

The letter: The open letter was published online on 31 October and has since gathered over 600 signatures, with new support continuing to roll in. The letter can be viewed at: https://www.bcam.org.nz/openletter.

Understanding Blood Cancer Medicine Availability in Aotearoa report

On 24 October, the Cancer Control Agency released a report identifying 24 blood cancer medicines that are funded in Australia but not in New Zealand. These treatments are clinically significant options that Kiwis with blood cancer urgently need to ensure they have the same chances at life as their Australian counterparts. Six medicines that significantly improve survival and quality of life for patients are either on Pharmac’s funding waiting list or are in the assessment process.

Impact on Blood Cancer Patients

Blood cancer patients face unique challenges, as there are no prevention or screening options available to them. Their survival relies heavily on timely access to effective treatments, such as those outlined in the Cancer Control Agency’s report. Blood cancer is the third leading cause of cancer-related death in New Zealand, with more than 21,000 New Zealanders currently living with a blood cancer diagnosis.

Leukaemia & Blood Cancer New Zealand welcomes Pharmac’s proposal to widen access to pembrolizumab (Keytruda) for Hodgkin lymphoma and bendamustine for chronic lymphocytic leukaemia, as these are highly beneficial therapies for the patients that need them.

As Pharmac continues to work through the allocation of its recent budget uplift, we hope to see meaningful prioritisation of blood cancer medicines on the Options for Investment list. Many of these medicines have significant clinical benefits and form standard clinical practice internationally.

LBC will be making a submission on behalf of blood cancer patients, but your voice can also be heard by providing feedback directly to Pharmac via email: consult@pharmac.govt.nz by 4pm Friday 26 July 2024.

For further details, refer to the Pharmac consultation page:
lymphoma –  https://pharmac.govt.nz/news-and-resources/consultations-and-decisions/proposal-to-widen-access-to-immunotherapy-for-six-types-of-cancer-and-treatments-to-prevent-fungal-infections

leukaemia –  https://pharmac.govt.nz/news-and-resources/consultations-and-decisions/proposal-to-fund-lanreotide-acetate-for-various-indications-and-widen-access-to-four-cancer-treatments

Thursday, 6 June 2024

Rt Hon Christopher Luxon
Prime Minister
Parliament Buildings

Hon Shane Reti
Minister of Health
Parliament Buildings

Hon David Seymour
Associate Minister of Health (Pharmac)
Parliament Buildings

Dear Prime Minister and Ministers of Health,

Re: Ensuring that medicines funding for blood cancer patients will not be forgotten

As the country’s alliance of blood cancer patient advocacy groups (Leukaemia & Blood Cancer New Zealand, Myeloma New Zealand, Chronic Lymphocytic Leukaemia Advocates New Zealand) and consultant haematologists, we were very disappointed to see that the promised $280m for ring-fenced funding of oncology medicines was omitted from last week’s Budget announcements.

While it is encouraging that you have subsequently heard the public outcry and have taken steps to confirm your commitment to delivering these solid tumour medicines for patients this year, we are writing on behalf of the 21,000 blood cancer patients in New Zealand to ensure that your pre-election promise to them is also honoured and delivered.

When announcing the ‘13 medicines’ policy on August 21 last year, Minister Reti (then National’s health spokesperson) told blood cancer patients, “we have not forgotten you”.

“I want to give a shoutout to the non-solid [tumour] cancer sufferers – that’s the people with myeloma and leukaemia [and lymphoma, among other blood cancers] – we have not forgotten you… but where we are now is that the Cancer Control Agency hasn’t done the piece of work like they have done with the solid tumours, to be able to give us that guidance as to what those treatment gaps are. So again, we are sending out a signal to the people with myeloma and the people with leukaemia, we understand, we haven’t forgotten you, we just need that piece of work to be done by the Cancer Control Agency”

The Cancer Control Agency’s report on blood cancer medicines, referred to by Minister Reti, is now only days away, with the advice due before the end of this month.

The importance of this report on blood cancer medicines access in Aotearoa is evident from the Cancer Control Agency’s prior report on solid tumour medicines, where it was noted that “Blood cancer treatment is heavily reliant on the use of medicines, given that other non-medicine options, like surgery or radiotherapy, are often not an option. We suspect that the conclusions of this analysis (which is focused on solid tumour medicines) would be similar if not more compelling for blood cancers.” An identical statement was made in the agency’s Briefing to the Incoming Minister of Health in January.

In March, Minister Reti further reassured blood cancer patients that they would be treated equitably, stating,
“…the blood cancer medicines were not actually assessed. I would like to think that they [Pharmac and the Cancer Control Agency] might incorporate that advice as well.”

In recent days, various Ministers of the Government have given positive reassurance to the public that the Budget Day omission on cancer medicines funding will be put right and the Government will deliver on its promises with urgency. We thank you for that commitment. However, in the media furore surrounding these announcements, a re-commitment from the Government to ensure equitable progress in medicines access for blood cancer patients, alongside solid tumour patients, was unfortunately forgotten.

As you work on the details for funding and implementing the cancer medicines policy and consider the imminent blood cancer medicines report, we ask that you honour your pre-election commitment to all cancer patients across New Zealand – specifically including blood cancer patients – so that they are not left behind.

We thank you for your stated goal to deliver better healthcare for New Zealanders and look forward to receiving your response.

Ngā mihi nui,

On behalf of the following haematologists and blood cancer patient advocacy organisations:

Dr. Rodger Tiedemann
Antony and Margaret Morris Fellow in Cancer Research
Associate Professor of Medicine, University of Auckland
Haematologist, Auckland Hospital
Cancer and Blood Service, Te Whatu Ora Health NZ

Dr. Ruth Spearing
Haematologist
Previous Clinical Lead Adolescent and Young Adult Cancer Service
Companion of the New Zealand Order of Merit
Canterbury DHB

Professor Peter Browett
Haematologist
Medical director, Leukaemia & Blood Cancer New Zealand

Haematology Society of Australia and New Zealand
Dr Annette Neylon
Haematologist/Transfusion Medicine Specialist
HSANZ Councillor for New Zealand

Tim Edmonds
Chief Executive Officer, Leukaemia & Blood Cancer New Zealand

Catherine Isaac
Trustee, Chronic Lymphocytic Leukaemia Advocates New Zealand

Nichola Oakenfull
Trustee, Myeloma New Zealand

Dr. Sarah Poplar
Clinical Haematologist | Kaimātai Toto
Cancer & Blood services / Te Tai Tokerau / Northern Region

Dr. Laura Chen
Haematologist
Middlemore Hospital

Dr. Sarah Hartley
Haematologist
Tauranga Hospital

Dr Fionnuala Fagan
Haematologist
Southern Blood and Cancer Service

Dr Bridgett McDiarmid
Haematologist,
Dunedin Hospital.

Dr. Samar Issa
Chair, Lymphoma Network of New Zealand
Haematologist
Middlemore Hospital
Te Whatu Ora Health NZ

Dr. Anna Ruskova
Haematologist
Clinical lead Haematology
Pathology and Laboratory Medicine
Te Toka Tumai | Auckland

Dr Eileen Merriman
Clinical Director Haematology
Waitemata DHB

Dr Imogen Caldwell
Haematologist
Pathology and Laboratory Medicine
Te Toka Tumai | Auckland

Dr. Clinton Lewis
Haematologist
Auckland Hospital
Te Pūriri o Te Ora | Te Toka Tumai
Te Whatu Ora Health NZ

Dr. Francisca Reed MD
Haematology Research Unit Manager
Te Whatu Ora Waitemata

Dr. Leanne Berkahn
Haematologist
Clinical Lead Haematology
Auckland Hospital

Delaine Smith
Chief Executive Officer
Australasian Leukaemia & Lymphoma Group

Dr. Suchitra Kirshnamurthy
Clinical Haematologist
Whangarei Hospital

Dr. Rory Bennett
Haematologist
Te Whatu Ora Health New Zealand
Waitemata

Dr. Peter Ganly
Haematologist
Christchurch Hospital

Dr Andrew Butler
Haematologist
Canterbury Health Labs
Christchurch

Raewyn Broady
Locum Consultant Haematologist
Nelson, Marlborough

Henry Ngu
Haematologist
Auckland Hospital
Te Whatu Ora Health NZ

Nicole Chien
Haematologist
Auckland City Hospital

Philip George
Haematology Consultant
Wellington Blood and Cancer Centre

Dr Bart Baker
Haematologist
MidCentral DHB
Te Whatu Ora Health NZ

Dr. Jared Williams
Haematologist
Dunedin Hospital

Dr. Kathryn Forwood
Haematologist
Two Whatu Ora Southern

Dr. Anna Byrne (she/her/ia)
Consultant Haematologist
Southern Blood and Cancer Service/Te Whatu Ora – Southern

Dr. Nicola Eaddy
Haematologist
Auckland Hospital

Dr. Kern Chai,
Haematologist
Christchurch

Dr. Tom Sapsford
Clinical Haematologist
North Shore Hospital

Dr. Richard Doocey
Haematologist
Director Auckland City and Starship Hospitals Stem Cell Transplant Program

Dr. James Liang
Haematologist
Middlemore Hospital
Te Whatu Ora Health NZ

Dr Anna Elinder-Camburn
Haematologist
Te Whatu Ora Waitemata

Amelia Turnwald
Clinical Research Coordinator Team Lead
Haematology Research
Waitematā

Dr. Anup George
Consultant Haematologist
Wellington Blood and Cancer Centre

Emma-Jane McDonald
Haematologist
Christchurch Hospital

Dr Matthew Mackey
Consultant Haematologist
Waikato & Tairāwhiti

Dr. Sophie Leitch
Consultant Haematologist
Department of Haematology
North Shore Hospital

Dr. Catherine Neal
Haematologist
Christchurch Hospital

Dr. Laura Young
Haematologist
Auckland Hospital
Te Whatu Ora Health NZ

Dr. Gordon Royle
Haematologist, Middlemore Hospital
Senior lecturer, Auckland School of Medicine.

Dr. (Maria) Rhida Bautista
Consultant Haematologist
Southern Blood and Cancer Services

Dr. Helen Moore
Laboratory Haematologist
Waikato

Dr. Paul Ockelford
Clinical Haematologist
Auckland

Dr. James Campling
Consultant Haematologist
Lakes and Waikato district

Dr. Shahidul Islam
Consultant Haematologist
Waikato Hospital

Dr. Travis Perera
Haematologist, Wellington Blood and Cancer Centre, Wellington Hospital
Chair, New Zealand Haematology Research Group

Dr. Matt Wheeler
Associate Chief Medical Officer
Haematologist | Acute and General Physician

Dr. Marie Hughes
Haematologist
Te Whatu Ora, Hauora a Toi Bay of Plenty

Dr. Kirsty Marshall
Haematologist Middlemore Hospital
Cancer and Blood service, Te Whatu Ora Health NZ

Today’s Budget is a significant setback for cancer patients across New Zealand. With no new funding for Pharmac, the Government has backtracked on National’s pre-election pledge to provide an additional $70 million for cancer medicines over the coming year.

 The absence of additional budget means that no new medicines will be funded by Pharmac, for any condition, over the next 12 months beyond those already under consultation. This reality was confirmed by Pharmac’s Chief Executive, who recently noted that current funding only allows Pharmac to “keep the lights on”.

 We are deeply concerned about the implications of this decision to delay the implementation of the cancer medicines funding policy by at least a year. It denies access to potentially life-prolonging and life-saving treatments for thousands of patients.

 Delaying and deprioritising funding for medicines directly impacts the quality of care and health outcomes for those living with cancer. The number of New Zealanders with cancer waiting on Government funding for medicines that Pharmac has already favourably reviewed has grown by 24% over the past 18 months to more than 6,800.

 In the case of myeloma patients, it will be another year that the life-prolonging benefit of Daratumumab goes unfunded in New Zealand, while it is funded as a standard of care treatment option in 48 other countries.

 New Zealand spends less on medicines as a percentage of GDP than any other OECD country, and today’s budget fails to address our outlier status.

 We will be engaging with the Government to urgently seek clarity on the timing and specifics of their plans for delivering on their pre-election commitments to cancer patients and their longer-term plans for medicines funding reform.

Leukaemia & Blood Cancer New Zealand agree with the proposal to expand access to generic lenalidomide and pomalidomide. This decision will bring New Zealanders one step closer to the international standard of care and will enable New Zealand haematologists to practice in closer alignment with internationally recognised clinical treatment pathways.

It is important to recognise that – despite this proposal – an urgent unmet need persists for myeloma patients, who have not seen a new mode of action funded in the last decade. Myeloma is a relapsing and remitting disease, meaning that access to several treatment options with different mechanisms of action is required to keep people living.

Daratumumab represents a new mode of treatment, and both daratumumab and carfilzomib are clinically and cost-effective therapies that form part of the established standard of care internationally. Not having access to these medications means that New Zealanders are ineligible for some clinical trials.

These modern medicines continue to await funding on Pharmac’s Options for Investment list and highlight a broader issue where New Zealanders have to wait for the patent life of medicines to expire before they are publicly funded. This is unacceptable for blood cancer patients whose survival is wholly reliant on access to innovative medicines and who cannot afford to wait. LBC will continue to lobby for improved decision-making and faster access to standard of care therapies.

For all the details in this proposal, please visit the Pharmac site – here

This is your opportunity to have your say. Email your feedback to: consult@pharmac.govt.nz by 4 pm, Friday 17 May 2024

We are very pleased to see these positive outcomes following the Drive for a Change campaign to improve the National Travel Assistance (NTA) scheme. This is a step in the right direction. However, we want to ensure that blood cancer patients’ needs are adequately met, so LBC will continue to push for improvements and change alongside our NGO collective and our community.

Key changes announced

The following will take effect from 1 April 2024:

• mileage rates will rise from 28c to 34c a kilometre
• nightly accommodation rates will rise from $100 to $140 a night.  The rate for those staying with friends or whānau will increase from $25 to $35 a night.
• Also, NTA applicants can now email their claims through to claimsmanagement@health.govt.nz
• Details linked here NTA Frequently Asked Questions      NTA Information Sheet

The work isn’t over yet, so to keep up-to-date and to lend your voice to this, please visit the campaign website and help to keep this moving forward: www.letsdrivechange.org.nz

For more details on the NGOs’ full response, please see below:

Advocate groups welcome changes to travel assistance scheme

A collective of health charities has welcomed today’s announcement by Health New Zealand – Te Whatu Ora to introduce changes to the National Travel Assistance (NTA) Scheme as an “important step in the right direction”.

The NTA was set up in 2005 to provide vital financial assistance for people who need to travel long distances, or frequently, to receive specialist health services. A Ministry of Health review of the Scheme in 2018 highlighted it was underfunded, inaccessible and inequitable. Despite important recommendations, no action had been taken in the last five years, leaving the Scheme woefully out of date, and failing those who need it the most.

This motivated NGOs to push again for meaningful change to the Scheme, uniting under the banner of a Cancer Society-led NTA: Let’s Drive Change campaign at the end of 2023. This campaign culminated in an Open Letter sent to Health Minister Dr Shane Reti in December signed by 30+ organisations and more than 1000 individuals all calling for much-needed change.

Health New Zealand today announced changes to the Scheme that include an increase to overall funding, increases to reimbursement rates for petrol and accommodation, easier payment methods including up-front payments, and changes to eligibility criteria.

Speaking on behalf of the NGO collective, Cancer Society Chief Executive Dr Rachael Hart says while these initial changes are welcome, the next steps will be crucial.

“We need reassurance from Government around timely implementation of improvements to the NTA as well as a commitment to work alongside advocacy groups and patients to ensure the full set of changes truly meet the needs of those the Scheme was designed to support.

“These are steps in the right direction for rates, but we are keen to understand both the rationale behind the travel rate and whether it provides enough assistance to support those needing to get to life-saving medical treatment – so that people are not falling through the gaps”.

NGOs say these changes can’t come soon enough for the New Zealanders they collectively represent. Along with signing the Open Letter, NTA consumers shared their stories and reasons for backing this call for change.

They told the campaign team that the costs can be “crippling”, that the Scheme puts up barriers that feel “insurmountable” and many echoed the sentiment that one consumer shared: “With the rising fuel cost and with my cost-of-living expenses I have second thought my treatment at times. There is enough stress just knowing you are fighting cancer without the added stress of the added expense to get to treatment.”

Dr Hart says the Cancer Society and partner agencies are keen to work alongside health officials as they develop a clear implementation plan for changes.
“We remain united behind driving change for those who need to travel to treatment, their whānau, friends and supporters across the motu. We will continue pushing for significant change to take place this year.”

For a full list of those organisations who have partnered on the NTA: Let’s Drive Change campaign

All of us at Leukaemia & Blood Cancer New Zealand (LBC) were heartbroken today to learn of the passing of Blair Wingfield.  Blair has been an essential thread in the core fabric of LBC.

Blair lived an incredible life and was hugely influential in LBC’s history. His involvement began with his own blood cancer journey in the 1980s. A father to two young boys, Blair was just 39 when he was diagnosed with acute myeloid leukaemia (AML). At that time, treatments for AML were limited, and survival rates were low. Despite the odds, and with the help of a new chemotherapy drug called Amascrine, Blair survived – and earned himself the nickname ‘Miracle Man’.

Fueled by his personal experience, Blair was instrumental in moving LBC forward and shaping it into the organisation it is today. He was a trustee on LBC’s board for 20 years – from 1999 to 2018 – including time as Chair. LBC had a small budget and two part-time staff when he started in this role. By the time Blair retired from the board, LBC had grown to over 20 full-time staff members and achieved many significant milestones – including the establishment of the Leukaemia & Blood Cancer Research Unit at the University of Auckland.

Blair’s hard work on behalf of LBC was recognised in 2015 when he was appointed as an officer of the New Zealand Order of Merit for his contribution to health and sport.

After stepping down from his official duties, Blair remained in regular contact with staff, CEO and Board members, offering plenty of friendly advice and ideas (and cake!).

Pene Milne, Chair of the LBC board, says, “Blair is remembered with gratitude for his many, many years of service on the board. He was a fundamental driver through the early years, a source of knowledge and history, and a connector between LBC and the wider community.

“His sense of humour, kindness and generosity of spirit were the qualities that made us all adore him, and he will be sorely missed.”

We have lost a shining light but are grateful for him, his life, and the difference he made to blood cancer research and support in New Zealand.

Our thoughts are with Jean and the rest of Blair’s family.

Farewell and Gratitude for our Departing CEO

Kia ora,

I write to you today with mixed emotions as we bid farewell to our CEO, Peter Fergusson. After six years of dedicated service, Peter is now starting a new chapter in his life.

I wanted to take this opportunity to thank Peter for all he has done for Leukaemia & Blood Cancer NZ (LBC). Under his leadership, LBC has thrived and grown, establishing a solid foundation for sustained success. The strategic vision and efforts have laid the groundwork for LBC’s continued future growth.

During his time, the world has faced a global pandemic, and Peter has been the steady hand guiding us through some turbulent times. His resilience, foresight, and strategic decision-making have been instrumental in steering LBC through and ensuring our continued development.

An exceptional achievement during Peter’s time with LBC is our continued ability to deliver what we do and increase investment in research; this is particularly impressive given we receive no government funding. This accomplishment reflects his commitment to fiscal responsibility and long-term sustainability.

The global challenges brought about by lockdowns tested our resilience, and Peter skilfully led us through these unprecedented times. His commitment to maintaining operational excellence and prioritising the well-being of our team was a guiding light during this period.

We extend our deepest gratitude to all the supporters and donors who have been instrumental in our journey under Peter’s leadership. Your unwavering support has been a cornerstone of our success, and we express our sincere thanks for believing in our vision and our mission and contributing to our achievements.

One of Peter’s enduring legacies is the positive and inclusive culture he has fostered within LBC. His commitment to creating a workplace where everyone feels valued and heard has contributed significantly to our success. It will remain a vital part of our organisational identity.

As we bid farewell to Peter, we express our deepest appreciation for his leadership, vision, and dedication to LBC and its staff. While we will miss his empathy and guidance, we are confident that the foundation he has laid will serve as a springboard for our continued success.

You will be keen to know the continuity in leadership is secure, and Tim Edmonds (from Well Foundation) has been appointed and will join on 30 January 2024. We will welcome him and introduce you at that time.

In the meantime, we wish Peter every success in this next chapter of life with his family.

Pene Milne
Chair

Leukaemia & Blood Cancer New Zealand supports a campaign to ensure that the National Travel Assistance (NTA) Scheme works better for patients and whānau we care about.

You might also be interested in lending your support to it. It only takes a couple of minutes to sign up and/or you may like to share your own personal experience.

The NTA was set up by the government in 2005 to provide a vital travel subsidy Scheme to support people who need to travel away from home for medical treatment. The Scheme is now very outdated and is failing those people who this was set up to support, those who need this the most. For example, many people cannot afford to meet the significant shortfall in travel and accommodation subsidies, so they are missing out on life-saving treatment. An open letter to the new Minister of Health has been drafted, asking the new Government to prioritise urgent changes to the Scheme.

We are conscious that many people are impacted by the current NTA in various ways. One very powerful part of this campaign is individuals and whānau sharing their own personal experience of NTA through the media. The Cancer Society communications team would work closely with you to capture and share your story in a way that feels comfortable and safe to you. Let us know if you would be interested in doing this/or you can signal your interest through the website sign-up form.

You can read more about it and sign up as an organisation/individual here www.letsdrivechange.org.nz