In June 2024 my constituent, Owain James, passed away at 35 from a glioblastoma, the most common type of malignant brain tumour in adults. He is survived by his widow, Ellie, and their young daughter.
During his treatment, half of Owain’s 14cm tumour was surgically removed. Only 1cm of the removed tissue was ‘fresh’ or ‘flash’ frozen. The frozen tissue was used to treat Owain with a form of advanced immunotherapy, which developed a vaccine using the DNA contained in the frozen tissue.
After three rounds of the vaccine, doctors could not make more because they ran out of frozen tissue. The other tissue removed during his surgery could not be used, because it was stored in paraffin. Owain’s family only learned how small a proportion of the removed brain tissue had been frozen after it had run out.
Owain’s story is truly devastating. It stands out that if only more of his tissue had been frozen, he might have had more time with Ellie, his daughter, and the rest of his friends and family.
His story is, sadly, not unique and we know others who have passed away in similar circumstances. It is important that we learn from their stories, particularly about the importance of informed consent from patients and their families regarding treatment, and the storage of brain tissue. That is why I recently led a Westminster Hall debate on patient access to tissue freezing for advanced brain cancer treatment, diagnostics and research.
I am impressed and inspired by Ellie’s powerful campaign for Owain’s Law. It would require every NHS hospital to freeze suitable brain tissue the right way, nationwide, and guarantee the tissue stays the patient’s property under informed consent.
Ultimately, there are procedures surrounding brain tissue freezing which can be changed to improve the outcomes of those diagnosed with a glioblastoma and other less survivable cancers.
Firstly, the NHS needs more freezers that can be used to store fresh frozen tissue. The lack of freezer space is often a reason why brain tissue freezing is not done.
It is estimated that, for a cost-effective £250,000 to £400,000, all NHS trusts could have the right capacity and capabilities for flash freezing. This would ensure every brain cancer patient could access the latest treatments, research, and accurate genome sequencing techniques. This could go a long way to improving outcomes.
Secondly, attitudes and guidance protocols around brain tissue freezing must change. In Owain’s case, while there was capacity to freeze brain tissue, a decision was made not to. This had irreversible consequences for his treatment options. Lack of suitable brain tissue also limits options for medical research.
This should change, and I am asking the Government to establish national standards so that every suitable brain tumour sample is routinely frozen.
Next, it is simply not good enough that 40% of people with cancer in the UK have struggled to access treatment or care simply because of where they live. For only a few hundred pounds, this postcode lottery could be ended.
I am also calling on the Government to clarify the law about ownership of tissue post-extraction. It is incredibly difficult for a patient to have control over their tissue, and there is constant confusion over who technically owns it. In Owain’s case, it has been challenging for Ellie to retrieve the remaining tissue for further testing and research.
Brain cancer patients and their families should have the absolute right to be consulted on, and give informed consent on, how their tumour and brain tissue is stored.
These are common-sense, cost-effective changes that I strongly urge the Government to consider as part of the upcoming National Cancer Plan in England. The UK Government must also work with the Welsh Government and other devolved governments to ensure consistency of rights and practice across the UK.
Once again, I want to pay tribute to Ellie James and everyone else involved in the Owain’s Law campaign. The recent Westminster Hall debate was a positive step towards making the necessary changes that could save lives.
I am pleased by many of the Minister’s comments in reply to the debate, and I look forward to meeting her, along with Ellie, to press for action. If Ellie’s campaign succeeds, which I know it can, we can take another step towards making stories like Owain’s a thing of the past.
Owain’s Law would ensure every patient has access to tissue freezing for advanced brain cancer treatment
