A widow is advocating for legislative changes to eliminate disparities in care for individuals with brain cancer. Ellie James, whose husband Owain passed away in 2024 due to a glioblastoma, is leading a campaign urging for the right for patients to have their tissue frozen and stored post-surgery. This would allow access to personalized treatments and genetic testing, a practice that currently varies within the NHS, leading to inconsistencies in care provision.
Mrs. James is pushing for a legal amendment, known as Owain’s Law, which would empower patients to make decisions regarding the handling of their tissue. She believes that if this law had been in effect during her husband’s treatment, he might still be alive today.
The issue will be deliberated in a Westminster Hall debate scheduled for Wednesday. Mr. James, a father, was diagnosed with brain cancer in September 2022 and underwent surgery to remove half of a 14cm tumor. Following the operation, the family fundraised for personalized treatment, only to discover that insufficient frozen tumor tissue hindered the process.
According to Mrs. James, a portion of the tumor was rendered unusable for treatment due to improper preservation, limiting the number of vaccines that could be produced. Despite initial success with treatments post-surgery, including vaccines, Mr. James eventually relapsed and passed away in June 2024.
Mrs. James emphasizes the importance of patient autonomy and informed consent in deciding the fate of their tissue for future treatments or research. Owain’s Law, in her view, is about providing patients with choices and control over their medical decisions.