Building connections for stronger advocacy
by Chris Tse
Brain Wave, December 2022
Patient advocates gathered at parliament on 14 December 2022 to present the Patient Voice Aotearoa petition
This week I had the pleasure of joining representatives from a range of different patient groups at parliament to hand over a petition urging Pharmac to fund life-saving medicines for all New Zealand children. The nation’s capital had put on a warm, sunny day so we gathered outside at the new children’s playground on parliament’s front lawn (the site of the infamous anti-vaccine mandate riots in March which destroyed the old playground). There was no rioting or violence at our gathering, although no less resolve among the participants.
Expertly marshalled by Malcolm Mulholland of Patient Voice Aotearoa (PVA), the organisers of the petition, members of the brain tumour community stood side by side with people from various groups - muscular dystrophy, Pompe disease, lymphoma, type-1 diabetes among others. Many had come at the invitation of Rare Disorders NZ (RDNZ), a charity which represents a myriad of rare diseases and conditions, including brain tumours.
Photo credit: Rare Disorders NZ
Rare Disorders NZ fills a vital role in providing a voice for the ‘little guys’ – people with rare disorders who may not have the numbers or resources to advocate for themselves. RDNZ allows them to sit at the table with government agencies, speak with Ministers, or have their story told in the media. Brain tumours are rare, and brain cancer patients find it difficult to have their voice heard above the much larger campaigns run by the breast, prostate, bowel and other more common cancer groups.
As chair of Brain Tumour Support NZ, I have always sought to build connections with like-minded organisations such as PVA and RDNZ so that our patient voice can be amplified and our advocacy efforts strengthened.
In 2022 Brain Tumour Support NZ has stepped up its advocacy work in areas such as medicines access, clinical research, service capacity, staffing resources and the national brain tumour registry project.
Some of the advocacy areas we continue to be involved in:
1. Lobbying Pharmac to fund bevacizumab (Avastin) for recurrent glioblastoma
2. Developing a national brain tumour registry
3. Increasing the funding into brain tumour research from government, private sector and philanthropic sources
4. Establishing more brain tumour clinical trials at New Zealand hospitals, including through connections with international clinical trial networks and industry
5. Demanding more funding for clinical nurse specialists or care co-ordinators in neurosurgery/neuro-oncology at our major hospitals
6. Advocating for increased MRI capacity in the public health system
7. Making a submission to Pharmac’s review of rule 8.1b on the funding of paediatric cancer medicines.
It was the threat of Pharmac removing the access to new paediatric cancer treatments which brought me down to parliament for the PVA petition handover. Brain tumours are the biggest cancer killer of New Zealand children 14 years and under, being responsible for 42% of all deaths from cancer in this age group. Childhood brain tumours are devastating diseases which rip the heart out of families. The last thing these families need is to be placed into financial hardship, as all of them will go to great lengths to keep their children alive.
From L to R: Kim McGuiness (Rare Disorders NZ), Samantha Lenik (NZ Pompe Network), Chris Tse (Brain Tumour Support NZ). Photo credit: Rare Disorders NZ
As Brain Tumour Support NZ has begun rolling out its support services for paediatric brain tumours this year, I have learned so much from engaging with parents who have been to hell and back on their child’s brain tumour journey. In many ways, the courage, tenacity and commitment that these parents have shown, underpinned by the love for their children, is a blueprint for the ideal patient advocate. Of course, they had no idea that they were being exemplary patient advocates. To them they were just mum and dad to Ashton, Elyse, Frankie, Freddie, Jemima, Mila, Portia, Riley and others.
The petition was handed over to three MPs: Te Pati Māori co-leaders, Debbie Ngarewa-Packer and Rawiri Waititi, and ACT deputy leader Brooke van Velden. Only a few hours earlier, these MPs had sat in the parliamentary debating chamber to hear Ukrainian President Volodymyr Zelensky’s historic address to the New Zealand parliament.
The President delivered a rousing speech where he urged New Zealand to step up to the world stage and take a lead in the field of protecting the peace. Prime Minister Jacinda Ardern and the leaders of the major New Zealand political parties were united in their show of solidarity with Ukraine. In explaining why, Ardern said: “We asked ourselves the question, what if it was us?”
As patient advocates we are continually posing the same question to the authorities that hold the key to better outcomes for our patients: “What if it was you?”