News Type: CEO News

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

The Alliance of Cancer NGOs (CANGO) is calling on Prime Minister Jacinda Ardern to urgently adopt the same hard-line, “zero tolerance” approach to cancer deaths that she is to COVID.

“Recently, the Prime Minister made it clear that a principled approach to COVID means zero tolerance for preventable deaths,” Peter Fergusson, Chair of CANGO, said. “Why wouldn’t we take the same approach to the 10,000 cancer deaths we have each year in Aotearoa New Zealand, so many of which are preventable?”

The Prime Minister’s declaration came in response to a media question during the September 23 COVID briefing about what is an acceptable level of deaths from COVID.

“I’ve always said that I don’t want a situation in New Zealand where we simply shrug our shoulders and accept that we have an infectious disease that takes lives when that can be prevented,” the Prime Minister replied. “That has been our principled approach all the way through and that hasn’t changed. And so that’s why you’ll hear, in the way that we’re talking, we want to continue to take that zero tolerance approach.”

CANGO believes that if the zero tolerance principle applied to cancer, the number of cancer deaths could be drastically reduced. “The Government will spend whatever is needed to prevent COVID causing the devastation that cancer wreaks on Kiwi families every single day,” said Fergusson. “Furthermore the learnings from New Zealand’s COVID response should be applied to cancer, specifically equitable access for Maori & Pacifika,” said Fergusson.

We’ve seen what New Zealand can do when we put our hearts, minds and budgets into it. So our hope is that the PM and Government will not shrug their shoulders, and will do for cancer what we’ve done for COVID. Let’s have the same zero tolerance approach to the 50% of cancers that are preventable, driving and investing in the early detection of cancers, which will save thousands of lives a year at substantially less cost to the Government and economy than is being spent on COVID.

The key priorities that the collective CANGO group have identified to Government are captured in this Manifesto (provided to the Minister of Health last year). These issues reflect a roadmap towards ensuring the world class cancer care that New Zealanders deserve.

https://covid19.govt.nz/alert-levels-and-updates/latest-updates/covid-19-media-conference-23-september-2021/

The recently announced Pharmac review is fatally flawed. While the Government may feel it can claim the moral high ground, listening to public concern and acting on their election promise of a “review”, they have also knowingly hamstrung the process by restricting the parameters of the review itself.  “This is political intervention at its finest,” Peter Fergusson, CEO Leukaemia & Blood Cancer NZ (LBC).

In short – it’s a review of Pharmac’s operations. It covers three areas: timeliness, transparency, and equity of access; sure, it will identify a raft of improvements, making it operate more efficiently and nothing more.

The critical factor missing, that would make a measurable difference to New Zealanders’ lives, is a review of the budget. “Pharmac may make decisions faster and with transparency, but due to budgetary restrictions, they will continue to be constrained to making the same decisions over and over again and New Zealanders will continue to die.” Peter said.

The fact is that the gap is widening in our lag behind every other OECD country when accessing new treatments; people are paying for this lag with their lives.  The Government’s response to bringing the COVID-19 vaccine to NZ as quick as it has is a clear example of what is achievable when funds are an essential part of the equation. Cancer remains this country’s most prolific killer – much more needs to be done.

“Nothing excuses the shameful loss of life when proven treatments already exist and can make incurable cancers something Kiwis live with rather than die from. We deserve better than this review!!” said Peter.

About Leukaemia & Blood Cancer New Zealand: Every day, seven Kiwis will discover they have a blood cancer such as leukaemia, lymphoma or myeloma. Leukaemia & Blood Cancer New Zealand (LBC) is the national charity dedicated to supporting them. The organisation aims to ease the emotional and practical burden carried by patients and invests in research to find a cure. With no direct government funding, fundraising is essential to allow LBCs life-changing work to continue. Charity # CC24498

Peter Fergusson, Chief Executive

It was obvious when the first reports started to come in of a novel coronavirus taking hold across the globe that life would change radically for many of us, and that blood cancer patients would be particularly vulnerable to the infection.  We knew that we would need to change our plans, increase the help we give to patients, and adjust the way we deliver support to ensure patients are kept safe. As a designated Essential Service, the team here at LBC has been working round-the-clock through all levels of lockdown to change the way we do things and maximise the care, support and practical help we offer. We have increased the help we give to the most vulnerable patients during this tough time by keeping in close contact by phone, text, and online. We have also provided online support groups and live

Q & A sessions with haematologists, pharmacists, and other health specialists for patients and families. Some of these sessions were recorded so, please contact your Support Services

Co-ordinator if you would like to view.  We’ve also updated our website with information on  Covid-19 and blood cancer, so please take a look www.leukaemia.org.nz.

Take care and look after each other,

Peter Fergusson

Peter Fergusson, Chief Executive

These days I’m often reminded of the John Lennon quote “Life is what happens to you while you’re busy making other plans”.

I know many of you will have experienced the uncertainty and stress that unexpected life events can bring, perhaps through your own, or a loved one’s cancer journey – or because of other life challenges.

It was obvious when the first reports started to come in of a novel Coronavirus taking hold across the globe that life would be changing radically for many of us and that blood cancer patients would be particularly vulnerable to the infection.

We knew that we would need to change our plans, increase the help we give to patients, and adjust the way we deliver support to ensure patients, families, and staff are kept safe.

In addition, the fundraising events we rely on for income to run essential support services would be postponed indefinitely – leaving a substantial hole in our budget.

As a designated Essential Service, the team here at LBC has been working round-the-clock through all levels of lockdown to change the way we do things and maximise the care, support, and practical help we give – especially to those who are most isolated and alone. Just a few examples of this work are:

• Increasing the help we give to the most vulnerable patients by keeping in close contact by phone, text, and online.
• Providing emergency financial support to people who are struggling with the basics like nutritious food, help with transport to treatments, and parking costs at hospital.
• Stepping in and organising deliveries of groceries and essentials to the most vulnerable patients.
• Providing online support groups and live Q & A sessions for patients and families with haematologists, pharmacists, and other health specialists.

Maintaining this support comes at a financial cost, and we are doing all we can to ensure it can continue – because as we all know, virus or no virus, cancer will not rest.

With this in mind, if you are in a position to donate, and would like to do so, I would ask that you please complete and return the enclosed form or donate via our website at www.leukaemia.org.nz/donate.

Any donation of any size is especially appreciated in these difficult times, every dollar makes a difference and will be put to immediate work ensuring our patient services and blood cancer research continues.

Thank you for your consideration and generosity. Stay well,

Peter Fergusson, Chief Executive

For more information, or to subscribe to the newsletter, email sarahf@leukaemia.org.nz