My husband Owain was just 35 when aggressive brain cancer took his life. 

Half of his tumour was removed – but only 1 cm was stored correctly, robbing him of life-extending vaccines and robbing our daughter of her dad.

If an appropriate amount of the samples taken from his tumour were frozen in the right way to allow him to benefit from emerging cancer treatments that ‘train’ the body’s immune system to fight the cancer, Owain could still be here today.

Owain’s Law would stop this needless loss. It will:

• Require every NHS hospital to freeze suitable brain-tumour tissue the right way, nationwide.
• Guarantee that the tissue stays the patient’s property under informed consent.

Owain’s Story:

Owain was diagnosed with a 14cm grade 4 brain tumour in his right frontal lobe in August 2022. The devastating impact of such a diagnosis is difficult to convey, especially when options for treatment are limited. 

We also found it horrifying that Owain was offered pretty much the same standard of care as his grandad had in the 1990s when he was also diagnosed with a brain tumour.

Owain was told if nothing was done he would have just weeks to live. So he was rushed in for surgery and they were able to remove half of the tumour. Owain's oncologist was very clear that the standard treatment of radiotherapy and chemotherapy would not reduce the size of the tumour, it would simply hold it back for a period of time until it would start to grow again. 

Owain made clear that his determination to prolong his life and to beat this disease was for his daughter Amelia, who was just 18 months at the time. 

In order to do this, we had to look for other options alongside the NHS treatment. We found a personalised vaccine that used tumour tissue to educate the immune system, essentially so the immune cells would recognise the cancer cells and hopefully eliminate them.

However, for this vaccine, we needed to use Owain's tissue and the tissue needed to be fresh-frozen. We discovered that, of Owain's 7cm tumour tissue that was surgically removed, only 1cm of this was fresh-frozen. No one had a conversation with us about how the tissue would be preserved and the implications of that. 

Because of this, we were only able to have three vaccines, which was the absolute minimum they could make.  Given the amount of tissue removed, we should have been able to make 30 vaccines. Nevertheless, we continued with the three. 

Despite the odds, following surgery, radiotherapy, three cycles of chemotherapy and three vaccines, Owain's first scan was phenomenal. The remaining tumour had fully regressed. He continued to have clear scans for nine months and a completely normal quality of life. It was a dream within our worst nightmare. 

But the tumour did come back. We were unable to have any further vaccines made and unfortunately, despite huge effort, Owain passed away on 26th June 2024. 

As his wife, I now live with the regret that, had his tissue been stored properly, he could well still be with us today.

Why we need Owain's Law:

Currently, storage regulations for tumour tissues vary significantly. In many regions, tissues that could be vital for research and treatments are either discarded or not optimally stored, resulting in lost opportunities for both scientific breakthroughs and personalised medical approaches. This inconsistency and lack of standard procedure delays progress that is crucial for moving things forward for brain cancer.

Owain's Law would mean standardising the process for storing and using brain tumour tissues, ensuring that patients must consent to any dealing regarding their tissue, and that following surgery, tissue is frozen to a set standard. 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.