A widow's campaign to change the law and end what she calls a 'postcode lottery' of care for brain cancer patients is set to be debated in Parliament.
The Campaign for 'Owain's Law'
Ellie James, 36, from Caerphilly in south Wales, is leading the charge for 'Owain's Law', named after her husband who died in June 2024. Owain James passed away from an aggressive brain tumour known as a glioblastoma.
The proposed law would give patients the legal right to consent to having tumour tissue frozen and stored after surgery. This process is crucial for accessing emerging personalised treatments and genetic tests, but Mrs James says its availability across the NHS is inconsistent and depends on where you live.
"I think patients should have control and informed consent over what happens to their tissue," Mrs James stated. "For me, Owain's Law is really about just allowing patients to have options and choice."
A Lost Chance for Treatment
Owain James was diagnosed with brain cancer in September 2022. Surgeons removed a 14cm tumour, but only half could be safely taken out. Following the operation, the family raised funds for a personalised vaccine treatment.
However, they discovered a critical issue. Most of the removed tumour had been preserved in a chemical, making it unusable for the vaccine, which requires fresh frozen tissue. Only a tiny portion had been frozen correctly.
"That meant that we only had a tiny little bit of tissue that could be used to make this vaccine," Ellie James explained. "The more tissue you've got for the vaccine, the more vaccines you can get. But because he only had a little bit, he only had three vaccines, where really he should have had around 30."
A Temporary Miracle and a Heartbreaking Loss
After receiving the three vaccines alongside chemotherapy and radiotherapy, a scan showed the tumour had completely regressed. For nine months, Owain enjoyed a normal quality of life with clear scans.
Tragically, the tumour returned. With no more tissue available to create additional vaccines, Owain James died in June 2024.
His widow is convinced the outcome could have been different. "If we'd had those 30 vaccines at the beginning, I fully believe he probably would still be here today," she said. "I feel like that choice for us was taken out of our hands by a decision made by a pathologist who had no idea what we were going to do."
The issue will be discussed in a Westminster Hall debate on Wednesday, putting the campaign for consistent, patient-consented tissue storage firmly on the political agenda.
