Head & Neck Cancer Support Network Trust Community News
A Breakthrough for the New Zealand Head and Neck Cancer Community: Access to Keytruda Begins
It’s a moment to celebrate for the head and neck cancer community across Aotearoa New Zealand! Pharmac has just announced widened access to life-saving cancer treatments, including pembrolizumab (Keytruda), starting from October 1, 2024. This marks a major victory for our community, offering renewed hope for people with advanced head and neck cancers.
For years, patients and advocates have called for better access to innovative treatments that can extend and improve the lives of those living with these challenging cancers. Pembrolizumab, a groundbreaking immunotherapy, has been a beacon of hope for cancer patients around the world, and now it will be fully funded here in New Zealand for eligible people.
More Time for Precious Moments with Loved Ones
The news that pembrolizumab will soon be available means more than just medical treatment; it means time. Time to share stories with friends, create new memories with whānau, and experience the moments that make life meaningful. Pharmac’s Director of Pharmaceuticals, Geraldine MacGibbon, summed it up perfectly: “Access to these medicines will slow down the progression of these cancers and improve survival so that people have more valuable time with their whānau and friends.”
For those in our community who have fought bravely against head and neck cancers, the potential to extend life while maintaining quality is nothing short of transformative. The uncertainty that many patients have faced, and the financial burden shouldered by those who’ve had to self-fund this treatment, will finally be alleviated.
Exciting News: Head and Neck Cancer Support Network Trust Becomes a Registered Charity
We are thrilled to announce that the Head and Neck Cancer Support Network Trust is now officially a registered charity in New Zealand! This is a significant milestone for our organisation, and we want to share what this means for our community and supporters.
What Does Charity Registration Mean?
Becoming a registered charity in New Zealand is not just a formality—it’s a mark of credibility and commitment. It shows that our Trust meets the rigorous standards set by the Charities Services, which oversees the charitable sector in New Zealand. This registration ensures that we are transparent, accountable, and dedicated to connecting, supporting and advocating for patients and whānau affected by head and neck cancer.
Tax Deductibility of Donations
One of the key benefits of our new status is the ability to offer tax deductions for donations. Donating to the Head and Neck Cancer Support Network Trust can now claim a tax credit for 33.33% of your donation, up to the value of your taxable income. This means that your generosity goes even further, allowing you to contribute more effectively to our cause and benefit from tax savings.
⛯ New Explorers Joining Our Community!
A warm welcome to new members, Corlene 'Corey' Greenwood , Heather Reid, and Johannes Andersen 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.
We have a welcome pack for you just click the link here to order. https://forms.gle/oMbvetsdMEjUZot88
Patient Resources
The Head & Neck Cancer Alliance (a USA based organisation) is working to provide webinars focusing on different topics that will help head and neck cancer patients understand what to expect before, during and after treatment and tips on managing side effects from treatment.
https://www.headandneck.org/survivorship-webinars/
Here are some of the recent video resources:
January - Parenting Through A Head and Neck Cancer Diagnosis, Treatment and into Survivorship
- Download Slides Here
May - Head and Neck Cancer: What To Expect the First Year
- Download Resource Slides Here
June - Guiding Light: End Of Life Care For Head and Neck Cancer Patients
- Download Slides Here
🗞️ 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.
Convenient Saliva Test Could Predict Head and Neck Cancer Recurrence
A study evaluated the effectiveness of soluble CD44 and total protein (TP) as biomarkers for monitoring head and neck cancer recurrence. Here, patients were monitored using a point-of-care (POC) salivary test and laboratory-based CD44 and TP level assays.
Singapore doctors may have found a way to make head and neck cancers more receptive to treatment
SINGAPORE – Not all cancers are the same, even when they originate from the same site. This is why some patients respond strongly to some treatments, while others do not.
🌟Shining a Light on Head and Neck Cancer Struggles: Navigating the Storm of Dental Rehabilitation Delays
Living without teeth is not easy. It’s a reality faced by many in our community, and we, as the Head and Neck Cancer Support Network Trust, are working tirelessly to bring about change for those affected. One individual’s story, shared with us, reflects the widespread struggle of patients experiencing delays in receiving dental rehabilitation—a delay that has left many feeling isolated, hopeless, and unheard.
This individual's journey began with multiple biopsies and surgeries to remove a tumour from the top gum. Thankfully, the biopsy revealed it wasn’t cancer, but the emotional and physical challenges continue. The monthly check-ups have become routine, yet the challenge of living without teeth until at least 2025 remains an overwhelming burden.
"I’m a really social person, active in my community, but now I’m just hiding at home. My worst nightmare was having no teeth. It’s hard to stay positive, and even harder to look for work to afford private dental care," shared the patient.
This delay in dental rehabilitation has left many, particularly women, feeling neglected and emotionally drained. The profound impact on mental health and social well-being is often overlooked by both the medical profession and government decision-makers. It's a harsh reality that demands immediate action.
Recognising the severity of this issue, the Head and Neck Cancer Support Network Trust took decisive steps to advocate on behalf of the affected individuals. We wrote to the Minister of Health, Dr. Shane Reti, outlining the unacceptable delays in dental rehabilitation. We aim to raise awareness and push for expedited solutions to address this concern.
Diana Ayling, Chair of the Head and Neck Cancer Support Network Trust, emphasised that our letter highlights the lack of available appointments until 2025 and the significant impact this delay has on people’s lives. "We cannot allow these delays to continue—people deserve to live with dignity and hope, not in silence and despair."
This story serves as a powerful reminder of the challenges faced by our community. It is a call to action for the medical profession and government to provide better support and understanding for those living with the consequences of head and neck cancer. Together, we must ensure that no one suffers in silence.
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🫶🏽 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
🌟 Last Word
We are thrilled to celebrate PHARMAC’s decision to fund Keytruda, bringing renewed hope to those battling head and neck cancer. This milestone is a testament to the power of advocacy and the importance of accessible treatment options. Additionally, the launch of the new Rare Disorders Strategy by Te Whatu Ora Health New Zealand marks a significant step forward in ensuring comprehensive care and support for individuals with rare conditions, including those affected by head and neck cancer.
Help us to help you
Donate Now: https://www.headandneck.org.nz/donations
Thank you for your continued support.
Head and Neck Cancer Support Network Trust
