Owain’s story
In August 2022, Owain was diagnosed with a 14-centimetre grade 4 brain tumour in his right frontal lobe. Despite urgent surgery, he was told that the standard treatment of radiotherapy and chemotherapy could only hold the tumour back for a period of time and would not reduce its size. This treatment was the same standard of care Owain’s grandad had in the 1990s.
Determined to fight for his life and for his 18-month-old daughter, Amelia, Owain and his wife, Ellie, explored additional treatment options. They discovered a personalised vaccine that used Owain’s own tumour tissue to train the immune system to recognise and attack cancer cells.
Of the 7 centimetres of tumour tissue removed during surgery, only 1 centimetre had been fresh-frozen, the method required to produce the vaccine. No one had discussed with Owain or his family how the tissue would be preserved or the implications of that decision.
As a result, only three vaccines could be made instead of an estimated thirty. Despite this, Owain’s response was remarkable. Following surgery, radiotherapy, chemotherapy, and the three vaccines, scans showed complete regression of the remaining tumour.
The treatment was successful for nine months. However, when the tumour returned, no further vaccines could be made. Owain sadly passed away on 26 June 2024. His wife, Ellie, now campaigns to ensure no other family faces the same preventable loss.
Charge.Org Petition
Owain’s Law would create a consistent national approach to brain tumour tissue by guaranteeing that any storage or use of tissue is governed by informed patient consent. It would also require every hospital to freeze suitable tumour tissue to a national standard following surgery, in line with guidelines from the British Neuro-Oncology Society (BNOS).
By implementing a consistent legal framework, patients and researchers alike would benefit from accelerated progress in treatment options. This framework is supported by brain tumour charities, advocates and the medical community.
Sign the petition to urge our government to enact Owain's Law, so every brain tumour patient from now on has more options regarding their tissue, whether that be for treatment or research.
Please click here to sign the petition.