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Ellie James, whose husband Owain sadly passed away from a brain tumour at the age of 34, has expressed that she cannot return to a normal life until there is a significant change in the treatment available to brain tumour patients. Driven by her experience, Ellie has been actively campaigning for a policy that mandates hospitals to freeze brain tumour tissue removed during surgery. The aim is to preserve this tissue so it can be used later for vaccines or scientific research. This cause will soon be the focus of a parliamentary debate led by her local MP, Chris Evans.
Owain James was initially diagnosed with a malignant stage four brain tumour at 34. Surgeons removed half of the tumour, but doctors indicated that further treatment could only manage the remaining tumour for a limited time. Owain and Ellie chose to pursue an immunotherapy vaccine treatment not offered by the NHS, which was derived from his tumour tissue. However, only 1cm of his 7cm tumour was preserved and frozen, limiting the potential for further use. Despite the tumour fully regressing after the vaccine treatment, a new tumour appeared nine months later, and Owain died in June 2024. Ellie believes that if more tumour tissue had been preserved, allowing for the creation of additional vaccine doses, Owain might still be alive today.
Ellie’s campaign for the NHS in Wales to implement what she calls “Owain’s Law” was previously rejected by the Welsh Parliament amid concerns about unintended consequences. Nevertheless, the issue has gained traction, with a Commons debate scheduled to take place soon, offering hope that these changes might be adopted across the UK. Ellie said, “It means everything. It takes all my energy to do it, but I just cannot go back to ‘life’ without getting this changed.” She also shared that Owain would have been deeply proud if his legacy led to better outcomes for others facing similar battles, stressing that the decision about freezing tissue was never offered to them at the time.
The challenges faced by brain tumour patients go beyond Ellie’s story. Matt Collins, diagnosed with glioblastoma in 2023, highlighted the importance of proper tissue storage for personalized vaccine treatments. After his surgery to remove a golf ball-sized tumour, Matt has been pursuing a specialised vaccine treatment funded through his fundraising efforts. Unfortunately, due to the way his tumour tissue was stored, he received fewer doses than planned. He said, “It wouldn’t have cured my cancer, but it could have given me a couple more months,” and emphasised the crucial need for patients to be informed about such treatment options. Meanwhile, brain tumour charity leaders have called for increased capacity to freeze tumour tissues nationwide, recognising that this practice is pivotal in unlocking access to clinical trials and innovative therapies.
In response to these campaign efforts, the Welsh government has stated that current clinical discretion adequately balances diagnostic requirements with research potential, warning that legislating tissue storage could hinder timely diagnosis or create conflicts. The UK Department of Health and Social Care echoed the importance of research in fighting brain cancer and announced an investment of £13.7 million to support advanced brain tumour treatment research through the National Institute for Health and Care Research’s Brain Tumour Research Consortium. While funding and debates continue, families like Ellie’s remain determined to see meaningful change for future patients facing this devastating diagnosis
Read the full article from The BBC here: Read More
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