UPDATE: Ellie James, 36, is taking her emotional fight for “Owain’s Law” to the UK Parliament today, aiming to transform how brain tumour tissue is handled after surgery. Her husband, Owain, died from a brain tumour at just 34 years old, and she believes better treatment options could save others like him.
In a powerful statement, Ellie revealed that her husband was not informed that more of his brain tumour tissue could be preserved for vaccine development before his death in June 2024. “I cannot go back to ‘life’ without getting this changed,” she asserted. Her campaign seeks to mandate that all hospitals freeze brain tumour tissue removed during surgery for future use in vaccines or research.
The debate in Parliament, led by James’ local MP, Chris Evans, comes after her previous attempt to pass “Owain’s Law” in the Welsh Parliament was rejected last year. The health secretary had warned of “unintended consequences,” but James remains undeterred, calling the changes essential for patients across the UK.
“It means everything,” James stated, emphasizing the urgency of the issue. “My husband wanted his experience to change things for the better for others.”
Owain underwent surgery that initially reduced his tumour, but a second tumour emerged nine months later. The couple opted for an immunotherapy vaccine based on his tumour tissue, which was not available on the NHS. Despite the initial success of the treatment, his condition deteriorated, and he passed away last June.
James believes that if more tissue had been frozen, Owain could have had access to additional vaccines, potentially prolonging his life. “Had we been properly informed, we would have chosen to freeze the tissue,” she lamented.
Another patient, Matt Collins, diagnosed with glioblastoma in October 2023, echoed James’ sentiments. After a six-hour surgery to remove a tumour, he learned it had started to grow again. Due to improper storage of his tissue, he received only four doses of treatment instead of the planned ten. “It wouldn’t have cured my cancer, but it could have given me a couple more months,” he reflected, highlighting the critical need for proper tissue storage.
The charity Brain Tumour Research supports increased frozen tissue storage capacity across the UK. Dr. Karen Noble, the charity’s director of research, emphasized, “Personalized treatments for brain tumours rely on gathering detailed genetic information about the tumour following surgery.” She warned that improper storage risks losing vital information that could pave the way for innovative treatments.
The UK’s Department of Health and Social Care stated, “Innovative research is vital in our fight against brain cancer.” They are investing £13.7 million into research aimed at developing new brain tumour treatments.
As the debate unfolds today, the outcome could have a profound impact on the lives of countless patients battling brain cancer. With a growing community rallying behind her, Ellie James is determined to ensure that no other family has to face the same heartbreak she experienced.
This developing story highlights the importance of informed consent in medical procedures and the potential to save lives through legislative change. Stay tuned for updates as this urgent campaign progresses in Parliament.
