Why Abbey Barrett's Mum Wants More Federal Government Help Funding Brain Cancer Research
The Barrett family's daily ritual is a poignant reminder of their loss. Each evening, they place a colorful sticker on their lounge room wall, symbolizing their resilience in the face of their daughter and sister, Abbey's, tragic death from brain cancer 18 months ago. At just 11 years old, Abbey's life was cut short, leaving her mother, Justine, father, Rick, and sisters, Willow and Tasmin, grappling with profound grief.
Justine, a pillar of strength, shares her family's story with the hope of advocating for change. She emphasizes the emotional toll of witnessing her child's suffering, questioning why voluntary assisted dying for children isn't an option. The Barretts, despite their resilience, struggled with the decision-making process surrounding Abbey's care, highlighting the immense responsibility placed on families during such crises.
Abbey's passing was marked by a desire to normalize death and grieving within the family. Justine recalls drawing pictures and writing messages on her daughter's body as a poignant farewell. The sisters continue to navigate the weight of their grief, facing challenges that have impacted their mental health and academic pursuits.
The statistics surrounding brain cancer are alarming. Despite being described as 'rare,' it accounts for approximately 2% of all cancers. In 2023, 1,579 Australians succumbed to brain cancer, surpassing the number of road crash fatalities in the same year. This disease disproportionately affects children under 14, making it the leading cause of death for Australian children in this age group.
The five-year survival rates for brain cancer have only slightly improved over the last three decades, from 19% (1990-1994) to 23% (2015-2019). This grim reality underscores the urgent need for enhanced funding and research.
Dr. Rosemary Harrup, a medical oncologist, highlights the devastating impact of brain cancer, particularly glioblastoma, which affects about a quarter of patients two years after diagnosis. The complexity of brain cancer treatment is further complicated by the blood-brain barrier, a protective network that hinders the effectiveness of most treatments.
However, there is hope on the horizon. Dr. Harrup praises an international study utilizing ultrasound to temporarily open the blood-brain barrier, allowing chemotherapy to reach the brain. This innovative approach offers a glimmer of optimism in the fight against brain cancer.
The Brain Tumour Alliance Australia is working tirelessly to address the burden and economic cost of brain cancer, estimated at $850 million in 2025, with projections of $3.2 billion by 2050. The alliance advocates for increased funding, requesting $200 million over 10 years for research and trials, and up to $10 million for improved clinical care, including specialized nurses.
The disparity in funding for brain cancer research is stark. From 2003 to 2020, brain cancer received a mere $111.6 million in project funding, significantly less than breast cancer ($431.6 million) and leukemia ($234.7 million). The Australian Brain Cancer Mission, launched in 2017, allocated $126 million over a decade, with $50 million from the government and $76 million from philanthropic organizations.
Federal Health Minister Mark Butler acknowledges the need for continued commitment to brain cancer research, especially for children. He emphasizes the importance of making new treatments accessible to families through the Pharmaceutical Benefits Scheme (PBS) as quickly as possible.
The battle against brain cancer demands a unified front, with research and funding taking center stage. The Barrett family's story serves as a powerful reminder of the urgent need for action, urging the Australian government to prioritize brain cancer research and support families like theirs.
