Minister pledges action to address brain cancer tissue-freezing inequalities
A health minister has instructed NHS England to address the disparities in freezer capacity across the country
The Campaign for Owain’s Law has achieved a significant ministerial commitment to tackle the postcode lottery faced by brain cancer patients needing access to frozen tumour tissue.
Campaigners say the availability of fresh-frozen tumour tissue is 'vita'l for advanced testing and treatment options.
Following a debate at Westminster Hall, the Minister has instructed NHS England to address the disparities in freezer capacity across the network.
The Minister stated that NHS England had completed a gap analysis and is looking to support equitable expansion efforts.
Future actions include examining how trusts can expand their freezer capacities, collaborating with professional bodies, such as the Royal College of Pathologists, on national tissue-retention guidance and consent, and updating colleagues on progress by autumn.
Prompted by a Parliamentary petition led by Brain Cancer Justice and supported by over 109,000 people, the debate attracted around 35 MPs discussing broader issues impacting brain cancer patients, including clinical trial access, research funding, and improved national leadership.
Chris Evans MP, advocating for change on behalf of his constituent Ellie James, noted the necessity of national guidance to ensure patients have access to future treatment options, proposing the changes be named “Owain’s Law.”
"We have to keep going until every suitable patient, in every part of the country, has the same chance.”
Ellie James, campaign lead for Owain’s Law, highlighted the importance of correctly frozen tumour tissue and expressed hope that ministerial commitments would be the start of ending the postcode lottery affecting brain cancer patients.
“When Owain was diagnosed, we did everything we could to find hope. Surgery, radiotherapy, chemotherapy and personalised vaccines made from his tumour tissue. Against all odds, his remaining tumour fully regressed, giving him months of clear scans and normal life that was a blessing at the time.
"But because all of his tumour tissue had not been correctly frozen, doors that should have been open were already partially closed. I strongly believe that if all his tumour tissue had been correctly frozen, Owain would still be here today. No family should have to find out too late that where their loved one was treated meant they missed out on future options.
"The Minister has listened, and these commitments could be the start of ending this postcode lottery. But we have to keep going until every suitable patient, in every part of the country, has the same chance.”
Ruth Jones MP echoed the sentiment, stating that Owain’s Law aims to eliminate postcode disparities in accessing brain tumour tissue freezing.
As health, and consequently Owain's Law is devolved in Wales- the previous Welsh Government said:
“Our position is that the case has not been made for legislation. Clinical teams already use their expert judgment to balance diagnostic needs with the potential for research and novel therapies, and overriding that clinical discretion with legislation could compromise timely diagnosis or create conflict where tissue volume is limited.
“We will continue to work with All-Wales Medical Genomics Service and other bodies, to ensure NHS Wales practices in tissue archiving and access to genomic testing remain in the best interests of our patients.”
The current Welsh Government are expected to publish a cancer action plan over the next few weeks.