HMN 2025: How Brain tumor patients miss out on new treatments due to unequal access to tumor freezing and genetic testing

Molecular and genetic testing has become a game-changer in brain tumor care—shaping diagnosis, guiding treatments and opening doors to new therapies. Once available to a handful of patients, these tests are now rapidly being adopted across the NHS, according to a new study led by Professor Kathreena Kurian at the University of Bristol and the Tessa Jowell Brain Cancer Mission. The findings, published in Neuro-Oncology Practice, mark long-awaited progress in a field that has seen few new treatments in over two decades.

But the study also exposes deep regional inequalities. Access across the UK still depends on postcode, with some hospitals hampered by transport and processing delays, and others lacking the means to freeze tumor samples after surgery—a basic requirement for advanced testing.

The study lead, Professor Kurian from the University of Bristol and North Bristol NHS Trust, said the issue is both scientific and personal. She said, “My husband, Gerard, was able to access cutting-edge treatment through a trial at the Royal Marsden. This was only possible because his tumor was frozen and underwent whole genome sequencing. The genetic data revealed a match with a new trial, and Gerard was able to have precious extra time with us as a result.

“Unfortunately, not all patients are given that same opportunity—often unaware that something as simple as how tissue is stored can determine what treatments or trials they might later access. It is my mission to change this.”

The study was conducted in collaboration with the Tessa Jowell Brain Cancer Mission, a national convening body of cancer charities, the Department of Health and Social Care and 47 NHS hospitals, committed to promoting equitable access to brain tumor care.

Using data collected as part of the Tessa Jowell Centre of Excellence from NHS centers covering 84% of the UK population, the research team found that although genomic testing has expanded rapidly—with a 291% increase in whole genome sequencing (WGS) since 2021—many services are struggling to keep pace.

Two key findings include:

• Tissue is not being frozen for many patients, blocking access to sequencing and clinical trials.
• By 2024, only 71% of centers offered WGS, with particularly limited access in Scotland and Wales. In some cases, patients wait up to 150 days for results.

As well as the need for equitable investment and adoption of new innovations highlighted by the study, Professor Kurian sets out three practical steps that can be taken to achieve equity of access:

• Talk about it: Greater awareness that patients can decide whether their tumor tissue is used for advanced diagnosis, future treatments and research—one conversation could help save lives.
• Protect what matters: A simple Patient Tissue Charter that clearly articulates patients’ rights, ensuring that every tumor sample in the UK is properly preserved and used to help both current and future patients.
• Make it easy: Consent should be simple—one tap on the NHS App to give permission and power to patients.

Dr. Nicky Huskens, CEO of the Tessa Jowell Brain Cancer Mission, commented: “We have seen extraordinary progress in brain tumor genomics over the past few years, thanks to the hard work of staff in our hospitals and the NHS’s commitment to commissioning these advanced tests for brain tumor patients. But it is vital that this transformation benefits not just some but all patients, irrespective of where they are diagnosed.

“The Tessa Jowell Brain Cancer Mission will continue to work with our charity members, the NHS, researchers and policymakers to close the gap between innovation and access, ensuring that every brain tumor patient has the opportunity to benefit from cutting-edge diagnostics and treatments.”

The study was possible thanks to the dedicated efforts of the 21 NHS teams who provided data, the Centre of Excellence committee.

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