News Type: CEO News

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 Despite important recommendations, no action had been taken in the last five years, leaving the Scheme woefully out of date, and failing those who need it the most.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

Day in and day out, we see the impact of Pharmac’s inaction on cancer treatments for New Zealanders. We know there is a process to follow, applications to be made, advocacy is critical, and the patient voice is needed, in whatever way that is delivered. However, we don’t expect any of this to be trivialised by those running the organisation.

This recent revelation of the culture and nastiness within senior management puts a whole different light on this organisation; and it’s not a positive one. Whether Sarah Fitt’s employment is at risk, is a test of integrity for our Minister of Health and the Chair of the State Services Commission.

What is of greater concern is the impact on everyday Kiwis at the hand of this petty and disgraceful culture within the wider senior management of Pharmac. The lack of professionalism, emotional intelligence, compassion and empathy that these comments show when patients are dying due to being unable to access therapies funded in similar countries/health systems to NZ (UK, Canada, Australia) is, and remains to be a central issue.

At its most simplistic, this behaviour suggests they are out of touch with the community or the impact of their decisions on patients and their whanau; this is a great concern. Pharmac may not be able to fund everything they would like to, or that needs to be funded based on specialist opinion, but that should result in business cases, compassionate approaches and robust requests to the Minister for increased funding – not mockery of the messenger.

New story – https://www.stuff.co.nz/national/health/300985032/calls-to-sack-pharmac-boss-after-sick-sneering-remarks

We have repeatedly called for increased and faster access to up-to-date medication, greater investment into research and clinically led trials, better funding to allow patients to travel for treatment and identified our ongoing concerns with the health workforce capacity in New Zealand, with minimal movement from those in government. We want to see changes happening now, and as a member of CANGO, we are behind this call to arms for political action on cancer.

“For too long now, blood cancer patients have been denied funded access to treatments that would make a marked difference in their quality of life and cancer survival,” Peter Fergusson, CEO of Leukaemia & Blood Cancer New Zealand, and member of CANGO.

The Full CANGO press release and a copy of the CANGO Manifesto are below.

 

An urgent call to arms for political action on cancer

A coalition of New Zealand’s leading cancer charities, CANGO (Cancer Non-Governmental Organisations) has issued an urgent call to our political parties ahead of the election, to take action on cancer.

Cancer remains New Zealand’s single biggest cause of death and 75,000 Kiwis will be diagnosed with it during the next term of government. Although great strides have been made to improve cancer survival in our country, New Zealanders still face vastly different experiences when it comes to their outcomes and the care and treatment they receive.

CANGO’s election manifesto outlines four critical solutions for the next government to act on, in the areas of medicines funding, clinical research, assistance with travel costs, and healthcare workforce.

“Kiwis deserve world-class health care to improve their quality of life throughout treatment, increase their chance of survival and ensure they can get back to their everyday lives after cancer. But this is far from possible while we face stark disparities in outcomes for Māori and Pacific peoples and those in financial distress, slow, unfair and under-funded access to medicines, critical workforce issues in the health sector without urgent solutions, and a lack of investment in innovation, research and clinical trials,” says Philip Hope, spokesperson for CANGO and CEO of Lung Foundation New Zealand, a member of CANGO.

“Any one of us could develop cancer so these issues are important to all New Zealanders. CANGO members are working hard to solve problems, but the big solutions require political leadership and action. In order for cancer to become a ‘good news’ story, we need our politicians to galvanise around current solutions, like they did for Covid-19, while ensuring we are set up for the future,” Philip Hope adds.

The nine member charities are asking the next government to:

• Allocate $300 million a year specifically for Pharmac to implement a fast-track assessment and funding scheme for cancer medicines within 12 months;
• Provide funding of 0.01% in the government’s health budget for clinical research, implement trials NZ-wide and embed cancer research into health sector KPIs;
• Update and implement a fully-funded National Travel Assistance Scheme that is straight-forward, fair and fit-for-purpose by 2024;
• Develop, publish and action an integrated workforce plan for all cancers that is future-focussed while addressing urgent needs, ensuring that a lack of capacity or advancement is not causing harm and resulting in unnecessary deaths.

CANGO is an alliance of nine prominent cancer NGOs, formed in 2007 in an effort to increase collaboration among the charities. CANGO members are;

• Cancer Society of New Zealand
• Bowel Cancer New Zealand
• Breast Cancer Foundation New Zealand
• Gut Cancer Foundation
• Leukaemia & Blood Cancer New Zealand
• Lung Foundation New Zealand
• Melanoma New Zealand
• Prostate Cancer Foundation of New Zealand
• Unicorn Foundation New Zealand

These charities work together with NZ’s health agencies and other stakeholders in the cancer sector to reduce the incidence and impact of cancer on New Zealanders and increase survival.

CANGO Manifesto 2023

The appalling gulf between access to modern Haematology drugs in New Zealand and treatments available as ‘standard of care’ in other countries is succinctly outlined in a letter crafted by Dr Rodger Tiedemann – and endorsed by Leukaemia & Blood Cancer NZ.

This issue has snowballed over the past decade to become a critical failing in our healthcare system. Kiwis, in particular, living with multiple myeloma have not benefited from any of the considerable global progress over the past decade.

The letter specifically requests the urgent review of Daratumumab as a priority – a copy of the letter sent, can be read here

It has been just over a month since the National Service Framework application for an NZ CAR-T service was submitted and endorsed by Leukaemia & Blood Cancer New Zealand (LBC).

CAR T-cell therapies are licensed for certain lymphomas, myeloma and B-cell leukaemias for routine use in other parts of the world, and LBC wants to see this in New Zealand.  Having a national service framework for a CAR T-cell service is a small but critical step in the journey towards creating this new and innovative service – we want to see these steps quicken and continue!

What is CAR T-cell treatment?   CAR T-cell therapy stands for Chimeric Antigen Receptor T-cell therapy and works by redirecting a patient’s own immune cells to target cancer cells. For more information visit the Malaghan Institute’s site  https://www.malaghan.org.nz/our-research/car-t-cell/.

The wheels of government do not move with haste, but by coordinating key ‘voices’, we hope to build momentum and maintain the progress of this application. We are pleased to have these voices behind this, including:

• High-level decision-makers (e.g., Hon. Ayesha Verrall and Dale Bramley) are acutely aware of CAR-T, the benefits to NZ, and the hurdles that need to be addressed to establish a service
• Ian Town (Chief Science Advisor) has confirmed that the National Service Framework is the appropriate framework for a CAR-T service, within the existing policy landscape. This will likely be evaluated and funded by Te Whatu Ora
• The Ministry of Health have met with Australia’s Medical Services Advisory Committee (MSAC) to ascertain how NZ can incorporate formal health technology assessment for our clinical service funding decisions, including decisions for a CAR-T clinical service
• The public consultation on precision health (led by Alex Williams) received extensive feedback. Whilst not a policy piece in itself, it is an essential step to inform policy reform for access to precision health including CAR-T cell therapy
• Te Aho o Te Kahu are across the National Services Framework application for a CAR-T service, with further details regarding their position on a NZ CAR-T service to come