The Barrett family is advocating for increased brain cancer funding following the death of their 11-year-old daughter, Abbey, 18 months ago. Abbey died a year after being diagnosed with a fist-sized brain tumor at age 10, having experienced tiredness, hand tremors, and vision issues. She underwent two brain surgeries, chemotherapy, and radiation. Her mother, Justine, described the difficulty of navigating her care and witnessing her final hours, leading the family to question the lack of voluntary assisted dying options for children. The family copes by honoring Abbey daily and discussing her openly.
Brain Cancer Impact and Statistics
Brain cancer accounts for approximately 2% of all cancers, yet it caused 1,579 deaths in Australia in 2023, surpassing road accident fatalities (1,254). It is the leading cause of cancer death among Australian children under 14. Five-year survival rates have shown only marginal improvement in three decades, increasing from 19% (1990-1994) to 23% (2015-2019). Craig Cardinal from Brain Tumour Alliance Australia described these statistics as concerning.
Research and Treatment Challenges
Dr. Rosemary Harrup, a medical oncologist and researcher, highlighted that glioblastoma, a highly aggressive brain cancer, leaves only about a quarter of patients alive after two years. While surgical techniques have improved, residual cancer cells often lead to regrowth. The blood-brain barrier, which protects the brain from foreign materials, presents a significant obstacle for effective drug delivery. An international study utilizing ultrasound to temporarily open the blood-brain barrier for chemotherapy is currently showing promise.
Associate Professor Phillippa Taberlay and her team at the Menzies Institute are investigating epigenetic dysregulation in childhood medulloblastoma. Their research aims to identify altered gene expression and specific proteins or chemical tags that are not functioning correctly, which could lead to new genetic tools or pharmacological treatments for various cancers.
Funding and Advocacy
Funding for clinical trials in brain cancer is limited, often leading to disparities in access based on geographic location. Brain Tumour Alliance Australia estimates the economic cost of brain cancer in Australia to be $850 million in 2025, projected to reach $3.2 billion by 2050. The alliance is requesting $200 million over 10 years for brain cancer research and trials, along with up to $10 million to enhance clinical care, including funding for specialized nurses.
Historically, direct research funding for brain cancer has lagged behind other cancers. From 2003 to 2020, brain cancer received $111.6 million in total project funding, significantly less than breast cancer ($431.6 million) and leukemia ($234.7 million). The Australian Brain Cancer Mission, initiated in 2017, invested $126 million over 10 years, with $50 million from the government and $76 million from philanthropic organizations. Federal Health Minister Mark Butler has indicated a commitment to further action as the mission concludes and to expedite the availability of new brain cancer treatments, especially for children, on the Pharmaceutical Benefits Scheme (PBS).