A widow is urging for legislative changes to eliminate disparities in care for patients with brain cancer based on their geographic location. Ellie James is leading a campaign following the death of her husband Owain in 2024 due to a glioblastoma, a type of brain tumor. Owain faced challenges in accessing tailored treatment as most of his tumor, removed during surgery, was not preserved.
Mrs. James is advocating for patients to have the option to freeze and store their tissue post-surgery, allowing for personalized treatments and genetic testing. The 36-year-old, residing in Caerphilly, South Wales, highlighted the inconsistent practices within the NHS, leading to unequal care provision.
She is pushing for a legal amendment, named Owain’s Law, that would empower patients to make decisions regarding the handling of their tissue. Mrs. James expressed her belief that her husband might have survived had such legislation been in place during his treatment.
The matter will be deliberated in a Westminster Hall debate this Wednesday. Mr. James, a father of one, received a brain cancer diagnosis in September 2022. Following surgery, where half of his 14cm tumor was excised, the family fundraised for personalized treatment.
Unbeknownst to them at the time, to qualify for a specific vaccine, fresh frozen tumor tissue was required. Unfortunately, due to a chemical treatment, 6cm of the tumor became unsuitable for the vaccine production. Mrs. James explained, “He only had a small amount of usable tissue, resulting in just three vaccines instead of the necessary thirty.”
Following the vaccine regimen, alongside surgery, chemotherapy, and radiotherapy, scans indicated complete tumor regression. Mrs. James described this period as miraculous, with nine months of clear scans and normal quality of life for Mr. James.
Regrettably, the tumor recurred nine months later, and the lack of additional vaccines led to Mr. James’ passing in June 2024. Mrs. James firmly believes that with the full set of vaccines initially, her husband might still be alive today.
Expressing her stance, Mrs. James stated, “Patients should have the right to decide on the fate of their tissue, whether for future treatments, research, or testing. Owain’s Law, for me, is about empowering patients with choices and autonomy.”
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