Tuesday, 27 May 2025
On Tuesday, 27 May 2025, The Brain Cancer Group (TBCG) hosted its 8th Annual Awareness Event at the NSW Parliament House, shining a spotlight on the disparities in brain cancer care across regional New South Wales. The evening brought together medical professionals, patients, carers, policymakers, and advocates committed to improving outcomes for those affected by this devastating disease.
The event also featured expert insights from Dr Adrian Lee and Associate Professor Michael Back, Directors at TBCG, who presented data revealing significant gaps in access and outcomes.
The Brain Cancer Group extends its sincere thanks to The Hon. Sophie Cotsis MP, who graciously hosted the event at NSW Parliament House. Her ongoing support for brain cancer awareness and commitment to improving health outcomes is deeply appreciated.
The Brain Cancer Group shared new data and urgent advocacy messages highlighting the inequities in brain cancer care for regional communities in NSW.
Between 2017 and 2021, 44% of patients diagnosed with primary brain cancer in NSW were from regional Local Government Areas (LGAs). Due to being a low incidence cancer there is not the ability to provide specialised services in more geographically remote areas. All neurosurgical procedures took place in metropolitan centres, with none performed in regional hospitals. Furthermore, patients from regional areas had a 15% relative reduction in survival compared to their metropolitan counterparts.
The Brain Cancer Group identified several critical challenges faced by regional patients, including limited access to subspecialised care, fragmented care pathways post-surgery, and reduced opportunities to participate in clinical trials. These disparities are compounded by the low incidence of brain cancer, which makes it difficult to justify duplicating complex services across all regional centres.
To address these gaps, The Brain Cancer Group is calling for new models of care that leverage virtual technologies and stronger partnerships between metropolitan and regional providers. Key advocacy priorities include the development of a centralised Neuro-oncology Nurse Navigator role, streamlined access to clinical trials, and coordinated pathways to deliver specialised care to regional patients without the need for relocation.
These proposals are aimed at ensuring that every brain cancer patient in NSW—regardless of postcode—can access the high-quality care they deserve.
A key highlight of the event was the premiere of a short documentary, “The Long Road: Regional Voices on Brain Cancer Care”, created by videographer Dennis Tritaris of Orama Communications. Dennis spent two days on location in Dubbo and Orange, capturing the lived experiences of regional patients, carers, and health professionals. The video gave voice to stories of resilience, isolation, and determination—underscoring the urgent need for more equitable access to specialised brain cancer treatment.
Dr Jonathon Parkinson, Neurosurgeon and Director at TBCG, closed the evening by reaffirming the organisation’s commitment to bridging the gap in care and ensuring that geography is no longer a barrier to treatment.
Watch the event's proceedings including the premiere of "The Long Road: Regional Voices on Brain Cancer Care" HERE: https://youtu.be/YHGMixt_vRs?si=FHQM8INBjfEv5txG
