News Type: CEO News

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

With the introduction of the new Cancer Agency, the recently appointed head Professor Diana Sarfati outlined her 3 funding priorities; needless to say there was a clear indication of what was not of immediate concern. “One thing not on that priority wish list is more money for the stream of high-cost, life-prolonging drugs for terminal cancer, which prompt patient petitions and marches to Parliament.”

Here’s the considered response from Peter Fergusson, CEO of Leukaemia & Blood Cancer New Zealand.

“The challenge facing blood cancer as we consult and develop a National Cancer Plan is ensuring that many of the common assumptions relating to solid tumour cancers are not automatically applied or assumed to be appropriate for blood cancers by health policy decision-makers. The cause of blood cancers is not currently known, and effective screening programmes do not exist.

This key difference of blood cancers from solid tumours means that screening programs and preventative measures to reduce the incidence of these cancers is not available.Hence the resources to manage blood cancers need to be directed at accurate diagnosis, treatments and treatment outcome surveillance and monitoring.

Unfortunately, blood cancer data is often captured by disease type, which does not reflect the broader incidence of blood cancers and subsequent burden to the health system.

This inevitably leads to health policy decision-makers also under-estimating the impact and real cost to both the health system, individuals and their families.

Blood cancers (combined data) are our fifth most common group of cancers affecting all age groups. Blood cancer has the second-highest mortality rates just behind lung cancer).

Blood cancers (more-so than most another cancer group) have a heavy reliance on access to drug treatments such as systemic therapies including cytotoxic chemotherapy, antibody therapy, targeted agents and immunotherapy.

Drug development is occurring extremely fast, and new therapies are being proven in clinical trials and approved in overseas regulatory environments at an increasing pace.

Surgery and radiation, the most common tools for treating solid tumour cancers, are less likely to affect blood cancer patients’ survival, which relies heavily on access to drug regimens and stem cell transplantation.

Blood Cancer patients, understandably, have a keen interest in Pharmac budget levels and approvals – because unlike most other Cancers – this is often their only lifeline to survival. In many instances, these treatments can cure or render a condition chronic, rather than becoming fatal.

Access to these treatments is literally a matter of life or death for many blood cancer patients and their families.”

Learn more about our CEO Peter Fergusson here.

We welcome the Government’s Cancer Action Plan and the Pharmac announcement that Venetoclax will finally be funded for Chronic lymphocytic leukaemia – great news!

But there is more to consider. Here’s how our CEO Peter Fergusson has reflected on the announcement.

“There are aspects of the plan that deserve celebration, like the creation of a National Cancer Control Agency and additional funding for Pharmac.

However …beyond those two specific items the remainder feels like a ‘plan to have a plan’. My initial exuberance is tempered by the realisation that there are few targets, few timeframes and minimal investment identified.

New Zealand has one of the highest cancer rates in the world with 46% of men and 33% of women developing cancer before age 75.

As our population ages, these numbers become even more daunting, with cancer diagnosis expecting to double over the next 15 years.

The agency will be tasked with ensuring consistency of care; equitable survival outcomes; fewer cancers and better cancer survival overall.

An immediate priority will be establishing performance indicators to measure cancer care across DHBs.While the agency provides centralised leadership, it needs investment at ground level to deliver these improvements.

This investment is not yet evident and remains my key concern.

With your support, I’ll continue to ensure the voices of blood cancer patients are heard and kept at the forefront of policy changes and cancer investment decisions made by Government.”

Learn more about the Government announcement of a Cancer Action Plan

Learn more about our CEO Peter Fergusson here

Hello, my name is Peter Fergusson and I am delighted to introduce myself as the new Chief Executive Officer of Leukaemia & Blood Cancer New Zealand (LBC).  My predecessor Pru Etcheverry has left me some very big shoes to fill as CEO, but I am excited to join an organisation that has helped so many New Zealand families affected by blood cancer.

I am committed to growing our services to ensure we reach more people that need our help. This includes personalised patient support, comprehensive information and education, advocating on behalf of patients and funding research into better treatments and potential cures for blood cancer. Now as we look to the future of our organisation, these are the ways that LBC will meet the growing needs of our patients and families.

Reaching more people

We believe that no one should have to face blood cancer alone, and we know that over the coming years there will be increased demand for our services. We have recently opened a new office in Dunedin, and have employed two new Support Services staff, but we are also committing to ‘future proofing’ our services by launching our Endowment Fund.

Helping people get the best possible care

We are committed to patient care, and often in collaboration with many other health agencies, we advocate on behalf of our patients to ensure that they get the best treatment. Over the coming years, as we increase the number of patients we support, we aim to grow our advocacy service to provide a voice for our patients when they need it.

Support for life

We know that living with cancer doesn’t always end with the ‘all clear’. Being diagnosed with cancer or a blood condition can be life-changing, and even when a patient is in remission, it is often difficult or even impossible to pick up the life they had before diagnosis. We help patients and their families to cope with the long-term impact of their diagnosis by offering one-to-one support or counselling, financial help, or providing assistance with learning new skills to re-enter the workforce. This is an area of care that is often under-explored by health agencies, and over the coming years we will do more to raise awareness and provide help for those who need it.

Research

We are committed to improving the quality of life for patients and their families living with blood cancer or a blood condition, and this also means working to find the causes of these diseases and to improve patient outcomes.

We fund the Leukaemia & Blood Cancer Research Unit at the University of Auckland, where 18 researchers are undertaking ground-breaking genetic research into the causes and treatment for blood cancer. Our core funding of the unit has also helped to attract other funders and researchers looking for a cure. Over the coming pages you will read more about our plans around patient services and research, and hear the stories of how every day Kiwis and businesses are helping us to make a difference to those who need us most. Thank you for choosing us as an organisation that you want to support. We have only come this far with the assistance of people like you, and I hope that you will continue to help us as we look to the future.

Peter Fergusson – CEO Leukaemia & Blood Cancer New Zealand

Leukaemia & Blood Cancer New Zealand (LBC) is delighted to announce the appointment of Peter Fergusson as CEO.

LBC was established in 1977 and has grown substantially to become New Zealand’s leading organisation dedicated to supporting patients and their families living with leukaemia, lymphoma, myeloma and related blood conditions.

Former CEO, Pru Etcheverry, who was instrumental in growing the organisation, made the decision to leave the organisation earlier this year to pursue other interests. The Board has taken the appointment of finding a new candidate very seriously, making sure that LBC’s  values are upheld and the organisation continues to grow and thrive.

LBC’s Chair, Tony Wilding, said that with a vision to cure and a mission to care, LBC is committed to improving the quality of life for patients and their families living with leukaemia, lymphoma, myeloma, and related blood conditions. With Peter’s experience of over twenty years as a successful CEO, and with a wealth of experience across the health and disability sectors, most recently as CEO of YMCA Northern, we are confident that he can continue to uphold these values and lead the organisation into future growth.

Previously a CEO of Independent Living Services, Franchise Association of New Zealand, New Zealand Squash and Northland Rugby RFU, Peter brings strong commercial skills to the organisation.

Peter plans to utilise these skills as well as those he has developed from many years of governance, especially that as Chair of the Cerebral Palsy Society of New Zealand, which he has a personal connection to.

“While this differs from the challenges specific to Leukaemia and Blood Cancer – the impact on individuals and families, the need for sound research, advocacy, individual and family support, creative funding channels, resilience, health, business and government networks and the need for factual information – is ‘all too’ familiar and very transferable,” said Fergusson.

Peter also plans to draw on his experience and networks developed as Director of the New Zealand Recreation Association and as part of the Advisory Panel for Sport and Exercise Science at Auckland University of Technology.

“I know that Pru has left LBC in excellent shape and am looking forward to the opportunity to lead a highly functioning organisation through to its next stage of evolution,” said Fergusson.

Peter commences in the position on the 14^th of May and will be looking forward to getting started in the role.