Campaign for Brain Tumor Tissue Storage
A woman whose husband passed away from a brain tumor at the age of 34 feels she can’t return to normal life until she reshapes treatment options for patients. Ellie James, 36, is advocating for hospitals to preserve brain tumor tissue removed during surgeries for potential use in vaccines or research. This matter is set to be discussed by MPs in Parliament on Wednesday.
James shared that her husband, Owain, wished his experience could lead to better outcomes for others. His access to an immunotherapy vaccine was limited due to only a small portion of usable tissue being stored for future treatment. In response, the UK government announced an investment of £13.7 million to develop new brain tumor therapies.
James, residing in Caerphilly, had previously seen her advocacy for “Owain’s Law” turned down last year in the Welsh Parliament. Officials there cautioned that implementing such a law could lead to unintended consequences. However, James’s local MP, Chris Evans, plans to initiate a debate in the Commons on the subject, sparking hope that changes can be adopted nationwide.
She expressed, “It means everything.” The effort is, quite frankly, draining, but she insists, “I cannot go back to ‘life’ without making these changes happen.”
Owain James was diagnosed with a malignant stage four tumor at 34. While half of the tumor was surgically removed, the medical team indicated only temporary measures could be taken for the rest. The couple opted for an immunotherapy vaccine based on his tumor tissue, despite it not being available through the NHS. Ultimately, only 1cm out of 7cm of tissue was frozen for this purpose.
After starting this treatment, the remaining tumor initially regressed. Unfortunately, another tumor was identified nine months later, leading to his death in June 2024. James believes that if more tissue had been frozen, they could have created more vaccine. “I believe he would still be here today,” she reflected.
She believes her husband “would be absolutely elated” should the law ensure that patients consent in writing before surgeries and that the tissue remains their legal property, automatically stored post-operation. “He’d be hugely proud,” she said, adding that if they had been fully informed, they would have opted to freeze the tissue right away.
Another individual battling a terminal brain tumor, Matt Collins from Cardiff, conveyed to the BBC how Owain’s Law could have aided him in extending his life expectancy. Diagnosed with glioblastoma in October 2023 following a stroke, Collins underwent surgery for a golf ball-sized tumor only to find out it had begun to grow again by July.
With the help of fundraising efforts, he managed to raise £100,000 for a treatment unavailable through the NHS—DcVax-L, a personalized vaccine derived from the patient’s own tumor cells. Unfortunately, due to how his tissue was stored post-surgery, he received only four doses instead of the intended ten. “It wouldn’t have cured my cancer, but it could have given me a couple more months,” he shared, regarding his prognosis of 12-18 months to live.
The charity Brain Tumor Research has called for increased capacity for frozen tissue storage throughout the UK, emphasizing the importance of preserving tissue to facilitate personalized treatments based on genetic information gathered after surgery. Dr. Karen Noble, its director of research, pointed out the critical nature of storage methods, warning that improper handling could prevent access to vital information needed for cutting-edge treatments.
Government Response
In response, the Welsh government stated that a strong case for new legislation has yet to be established. A spokesperson emphasized that clinical teams already exercise expert judgment, balancing diagnostic needs with research possibilities. They noted that legislation could interfere with timely diagnoses and potentially create conflicts when tissue volumes are limited.
The UK’s Department of Health and Social Care emphasized the significance of innovative research in combating brain cancer, disclosing their investment of £13.7 million in the National Institute for Health and Care Research’s Brain Tumor Research Consortium to foster groundbreaking studies aimed at developing new treatments.
