A widow is advocating for legislative changes to eliminate disparities in care for brain cancer patients based on their location. Ellie James is leading a movement after her husband Owain passed away in 2024 due to a glioblastoma, facing challenges in accessing tailored treatments as most of his tumor was not preserved post-surgery.
Mrs. James is spearheading a drive for patients to have the option to freeze and store their tissue after surgery, facilitating access to personalized therapies and genetic examinations. Highlighting inconsistencies in this practice within the NHS, the 36-year-old from Caerphilly, south Wales, deems it as creating unequal care based on geographical areas.
She is advocating for a legal amendment, named Owain’s Law, to empower patients to decide the fate of their tissue. Mrs. James believes that her husband might have survived if such a law had existed during his treatment.
The matter is set to be deliberated in a Westminster Hall debate on Wednesday. Mr. James, a father, was diagnosed with brain cancer in September 2022, with surgeons able to remove half of his 14cm tumor safely during the operation.
Following the surgery, the family fundraised for a personalized treatment for Mr. James. Mrs. James disclosed that a portion of the tumor deemed unusable for treatment due to being stored in a chemical, limiting the production of vaccine doses. She emphasized the importance of having sufficient tissue for creating multiple vaccines.
Despite initial positive responses to the vaccines, subsequent scans showed complete tumor regression. However, the tumor resurfaced nine months later, leading to Mr. James’ demise in June 2024. Mrs. James expressed regret that due to limited tissue availability, they couldn’t obtain more vaccines, which she believes could have extended his life.
She stressed the need for patients to have informed consent and control over their tissue’s fate for potential future treatments or research. Owain’s Law, in her view, aims to empower patients with choices and options regarding their tissue utilization.