We are proud to announce today that Dr Scott Arthur MP’s Rare Cancers Bill has passed its third reading in the House of Lords. The Bill will now proceed to Royal Assent and be enshrined in law.
A crucial moment for the landscape of rare cancers research, the Bill promises to accelerate research innovation to improve survival rates for rare cancers, including brain tumours.
With rare cancers mentioned more times in 2025 that over the past 20 years, attention has finally been drawn to what we have been persistently campaigning for.
H/Advisors Cicero provides pro bono support for the charity coalition and Dr Scott Arthur MP. The three lead charities in the coalition are Brain Tumour Research, The Brain Tumour Charity, and Pancreatic Cancer UK. Through our campaigning for urgent change, advocating for patients and working closely with parliamentarians to emphasise the importance of new legislation, we’ve helped to shape the Bill with its sponsor Dr Scott Arthur MP.
Dr Scott Arthur (centre) with Baroness Elliott of Whitburn Bay and members of the coalition
There are more than 100 different types of brain tumours and even patients with the same diagnosis can be affected differently. The Rare Cancers Bill prioritises research, legislating the appointment of a named lead responsible for the delivery of rare cancer research, providing greater accountability, facilitating collaboration and long-term coordination for the UK’s research landscape.
Treatments for brain tumour patients are limited; there has not been a new drug for adult brain tumour patients in more than 20 years. Lack of research investment is one reason for this, but the regulatory processes that medicines for rare cancers must pass, contribute to this delay. Furthermore, the Bill sets out a commitment to review the UK’s Orphan Drug Regulations, examining what can be done to improve the regulations to support the development of treatments to enable innovative new treatments to be assessed in a way that is appropriate for a disease that kills more than 5,400 people every year.
Clinical trial recruitment for brain tumour patients is the lowest out of any cancer, and access is unequal across the UK. Plans to ensure patient data from cancer registries across the UK is accessible in a central registry are encouraging, as this will enable trial recruiters to find and contact eligible patients. It will enable more clinical trials to take place in the UK – leading to real outcomes for patients.
Dan Knowles, CEO of Brain Tumour Research said: "Next month, more than 1,000 people will be told they have a brain tumour. The Rare Cancers Bill represents a landmark moment, where the importance and needs of those patients — and thousands more like them — will be enshrined into law. Through a greater focus on research, access to clinical trials and smoother pathways to drug approval, we will see change and improved survival rates for brain tumour patients. But we won't stop here — we will be working to ensure the law, along with other commitments in the National Cancer Plan, is implemented and lives up to its promise for our community."
Dan Knowles and Trustee Sonia Khan
We are also thrilled to announce that our dedicated campaigning for the Rare Cancers Bill has been recognised nationally, with our partner H/Advisors Cicero winning an award for 'Best pro-active lobbying campaign on an issue or cause'.
It received this honour at the ‘In.Comms’ Corporate Affairs awards, in partnership with PRWeek UK, which took place on Wednesday 25th February. These awards recognise and reward outstanding achievement across corporate and financial communications, public affairs, pharma and healthcare PR.
Sonia Khan, a Brain Tumour Research Trustee, won the award for 'Public affairs trailblazer of the year'. Her tireless efforts into advocating for change and calling out inadequacies have helped to demonstrate the urgent need for this Bill.
Related reading:
