Head & Neck Cancer Support Network Trust Community News
We hope this newsletter finds you well. The newsletter is a little late as we wanted to capture all the news from the recent Patient Voice Aotearoa conference, Valuing Life. In this newsletter, we summarise the conference, and share some recent announcements from Pharmac that may impact those affected by Head and Neck Cancer. There will be no newsletter in May and June as your editor is “taking a break”. See you in July.
Highlights from the Valuing Life Conference
In Aotearoa New Zealand where access to life-saving medicines can spell the difference between precious moments with loved ones and unbearable loss, recent announcement of a multi-million dollar budget boost for Pharmac stirred hope and scepticism. The government's commitment to inject over $6 billion into Pharmac over the next four years appears as a beacon of promise. Yet, echoes of caution reverberate through the medical community and among patient advocates.
At the heart of this debate lies the poignant testimony of individuals like Emma Purchase and Fiona Tolich, whose lives have been profoundly impacted by the inadequacies of drug funding. Emma's poignant narrative, marked by the loss of her husband to bowel cancer, underscores the excruciating choices faced by families navigating the labyrinth of treatment costs. Fiona's journey as a "medical refugee," compelled to seek treatment abroad due to delays in Pharmac's decisions, sheds light on the dire consequences of bureaucratic inertia.
The recent Valuing Life conference, a groundbreaking collaboration between Patient Voice Aotearoa and Medicines New Zealand, served as a platform for voices like Emma's and Fiona's to resonate within the halls of power. Stakeholders from all facets of healthcare converged to dissect the challenges plaguing Pharmac's funding model and to envision a path forward. From discussions on health technology assessments to strategies for bolstering patient engagement, the summit illuminated the intricate web of issues entwined with Pharmac's budget constraints.
While the injection of $1.74 billion over four years offers a semblance of stability, the stark reality remains: this funding is primarily earmarked for sustaining existing commitments rather than fostering innovation. Pharmac CEO Sarah Fitt's acknowledgement that additional funding will be imperative for the introduction of new medicines underscores the precarious balance between maintaining the status quo and embracing medical progress.
The scepticism voiced by figures like Gastroenterologist Richard Stein and Patient Voice Aotearoa chair Malcolm Mulholland reflects a pervasive sentiment within the healthcare community. Despite incremental increases in funding, the spectre of underfunding continues to loom, casting doubt on the feasibility of bridging the gap with international standards.
As the torchbearer of change, incoming Pharmac chairperson Paula Bennett heralds a potential cultural shift within the agency. Her commitment to a patient-centric approach and acknowledgement of global shifts in medicine augur well for the future. However, the onus lies not only on leadership but also on concerted efforts from policymakers, industry stakeholders, and the community to effect tangible change.
The road ahead is fraught with challenges, yet the Valuing Life conference signifies a pivotal moment in the quest for equitable access to healthcare in Aotearoa. As white papers from the summit workshops find their way to decision-makers, the imperative for action grows ever more urgent. The stories of Emma, Fiona, and countless others serve as a poignant reminder that behind every budgetary allocation lies the potential to alleviate suffering, restore hope, and ultimately, save lives.
⛯ New Explorers Joining Our Community!
A warm welcome to two new members who have recently joined our community Facebook page, "The Explorers". Your presence enriches our network, bringing diverse experiences and perspectives. We encourage everyone to engage, share stories, and offer support as we navigate this journey together.
The Head and Neck Cancer Support Network is working closely with Rare Disorders New Zealand to advocate for funding and strategies to improve treatment, care and support of those affected by head and neck cancer. Here is their latest news.
CEO Chris Higgins attended the PVA/Medicines NZ ‘Valuing Life’ conference where he congratulated Paula Bennett on her appointment as Chair of Pharmac. He emphasised the importance of her exercising a leadership role in ensuring that the Pharmac executive values as allies rather than denigrates patient advocates. He offered to talk to her further about the specific issues that are important to the rare disorder community as part of her onboarding and orientation.
A few updates:
Rare Disorders Strategy
RDNZ are advised that Health Minister Hon Shane Reti has considered the Rare Disease Strategy and that work is progressing well towards a final version. There is hope that there there’ll be plenty in there which will require RDNZ to be actively involved in its implementation, and they looking at how they can create and fund the additional capacity that will be required to do this.
Rare Disorders Clinical Advisory Group and Rare Disorders Research Network governance group.
They are finalising the terms of reference for these two new groups and will be inviting expressions of interest soon.
Patient Resources
The Auckland Cancer Society and the Counties Cancer Network created resources for those affected by cancer in the Auckland region. We have attached a comprehensive list of the Cancer Support Specialist Nurses by suburb, and and invitation to attend a series of events to support those affected by cancer in the Auckland region. These events are held at the Auckland Botanical Gardens each month. For all the details see this link for copies of the flyers. https://www.headandneck.org.nz/externalresources/auckland
🗞️ News: International Head and Neck Cancer
We know that you and your whānau and friends, who share your journey, want to have access to the latest reliable information on head and neck cancer treatment advances. We have created a catalogue of new developments for you to view. We will keep adding to these resources as time goes on. Please feel free to share; there is much advancement in treatments and hope.
United Kingdom patients test personalised mRNA jab for melanoma
The world’s first personalised mRNA cancer jab for melanoma — which also has the potential to stop lung, bladder and kidney cancer — is being tested in British patients.
The jab, which offers hope of a cure, is custom-built for each person in just a few weeks.
It works by telling the body to hunt down cancer cells and prevent the deadly disease from coming back.
Guiding Light: New Advances in Sinonasal Cancer Treatment
This article explores the importance of integrating innovative treatment modalities and leveraging advancements in precision medicine to optimise patient outcomes in managing sinonasal cancers. The multifaceted approach discussed underscores the evolving nature of cancer treatment and the promise it holds for improving patient care in this challenging clinical landscape.
Researchers discover urine-based tests to detect head and neck cancer
Researchers from the University of Michigan Health Rogel Cancer Center have created a urine-based test that detects pieces of DNA fragments released by head and neck tumors. The test could potentially facilitate early detection of this cancer type, which currently does not have a reliable screening method.
💬 Member Chat
This month’s member chat is from one of our Auckland members. Like many of us he did not expect to be in the health system being treated for head and neck cancer. He talked to us ans shared his experiences.
🌟 Navigating the Maze: A Cancer Patient's Reflection on New Zealand's Health System
As I sit here, gazing out at the Auckland harbour, I can't help but reflect on my journey through the tangled web of our country's healthcare system. Five years ago, I was diagnosed with head and neck cancer, a diagnosis that not only shook me to my core but also opened my eyes to the harsh realities of our healthcare infrastructure.
Let me take you back to a time when my days were filled with the hustle and bustle of a physically demanding job. I worked hard, providing for my family, and never once did I imagine that I would one day be battling a life-threatening illness. But cancer doesn't discriminate, and it certainly doesn't care about your plans.
Since my diagnosis, I've encountered firsthand the shortcomings of our healthcare system. One of the most glaring issues is the shortage of health professionals. From oncologists to nurses, the demand far outweighs the supply, leaving patients like myself waiting weeks, sometimes even months, for essential treatments and appointments. It's a frustrating reality, knowing that every minute counts in the fight against cancer.
But it's not just the lack of manpower that's plaguing our healthcare system; it's also the disjointed nature of its various components. Coordinating between different specialists, departments, and even hospitals often feels like navigating a maze without a map. Vital information gets lost in the shuffle, leading to delays in diagnosis and treatment, and ultimately, putting patients' lives at risk.
And then there's the issue of funding—or rather, the lack thereof. Despite being a developed nation, New Zealand's healthcare system is severely underfunded. The government must allocate more resources to ensure everyone has access to timely and quality care, regardless of their socio-economic status. After all, health is a fundamental human right, not a privilege reserved for the fortunate few.
Perhaps the most disheartening realisation is that many Kiwis are oblivious to the dire state of our healthcare system. They go about their daily lives, blissfully unaware of the enormous funding needs required to bring our healthcare system up to par with international standards. It's a silent crisis, overshadowed by other pressing issues, but one that affects each and every one of us, directly or indirectly.
As I continue my journey as a cancer patient, I am hopeful that change is on the horizon. We need to start talking about the shortcomings of our healthcare system openly and honestly. We need to advocate for more government funding, better coordination between healthcare providers, and increased public awareness of the challenges we face.
Because until we address these issues head-on, countless lives will continue to be lost, and the promise of a world-class healthcare system will remain nothing more than a distant dream. It's time to demand better—for ourselves, for our loved ones, and for the future generations of New Zealanders.
🫶🏽 Community Resources
If you are new to head and neck cancer, or back in treatment, we have a support pack for you. You can find all the details here. https://www.headandneck.org.nz/patient-planner
🫶🏽 Contact us
We welcome contact from our head and neck cancer community, including whānau and friends. Please feel welcome at any of these contact points. https://www.headandneck.org.nz/contact-us
🌟 Our Wish for You
As we embark on these initiatives and celebrate our growing community, we extend our warmest wishes to every one of you. Your strength, resilience, and support continue to inspire us, and together, we are making a difference in the lives of those affected by head and neck cancer. Please feel free to make a donation to support our work at any time. https://www.headandneck.org.nz/donations
Let's continue to support each other, learn together, and ensure that no one walks alone in this journey. Together, we are a source of strength, understanding, and hope for those affected by head and neck cancer. Thank you for being an essential part of our supportive community!
Head and Neck Cancer Support Network Trust
