First published on Wednesday 14th January. Last updated on Friday 16th January.
We are thrilled to announce that the Rare Cancers Bill has passed its second reading in the House of Lords.
The real theme of the debate in the House of Lords today (Friday 16th January) was one of hope. Hope for patients, hope for their families and hope for the future.
Welcoming the news, Dr Karen Noble, our Director of Research, Innovation and Policy, said: “We are getting closer to a day when a smoother pathway for research into brain tumours and access to clinical trials will be written into law. The proposals set out in the Bill will deliver a 'Rare Cancers Champion' empowered to interrogate decision making and current processes that leave patients with brain tumours and other rare cancers behind. Our work won't stop here - when this Bill hopefully becomes law, we will be working to ensure it is implemented and lives up to its promise for our community.”
Nicola Wharton’s son, Aaron (pictured below), died at the age of seven, of a high-grade ependymoma. Despite undergoing multiple surgeries, radiotherapy and chemotherapy, Aaron ran out of treatment options and passed away on Easter Sunday 2023.
Nicola, 41, from Flintshire, said: “Brain tumours and other rare cancers have been neglected for far too long. It brings us hope to see real progress towards a Government commitment to bringing about change for the brain tumour community though research, clinical trials and regulatory reviews. Nothing prepares you for losing your child. Aaron was robbed of his life because there is so little available for those diagnosed with this cruellest of diseases. It’s time we saw recognition of brain tumours and other rare cancers in law.”
What is a Private Members’ Bill?
A Private Members’ Bill is a suggestion for a new law or a change to an existing one. It is proposed by a backbench MP who doesn’t have a role in the Government – for example they are not a Minister or a Secretary of State. At the start of each parliamentary session, 20 MPs are selected at random to put forward Private Members’ Bills.
The Rare Cancers Bill was put forward by Scott Arthur MP. Having lost his father-in-law to a brain tumour, Scott understands first-hand the devastating impact of this disease and the urgent need for reform. Brain Tumour Research has worked with Scott from the outset to shape the Bill.
How does a Bill become law?
A Bill must pass through several stages in the House of Commons and the House of Lords before it can become law. These stages are known as ‘Readings’ and they allow MPs and members of the House of Lords to debate the proposals. Once both Houses approve the wording of the Bill, it is given the Royal Assent (approval by the King) and made law.
What’s the difference between a Bill and an Act?
A Bill is a draft law – it is still being debated and amended. An Act is a law that has been passed following approval by both Houses and Royal Assent.
What is in the Rare Cancers Bill?
The Rare Cancers Bill includes proposals that will help bring about change for the brain tumour community.
- Appoint a named responsible lead for the delivery of rare cancer research, providing greater accountability, facilitating collaboration and long-term coordination for the UK’s research landscape
- Commit the Government to review the UK’s Orphan Drug Regulations, examining what can be done to improve the regulations to support the development of treatments for rare and less common cancer treatments
- Ensure patient data from cancer registries across the UK is shared with the ‘Be Part of Research’ Registry with a new tailored service for rare cancers, collating all UK patient data in a single, accessible point. This will enable more clinical trials to take place in the UK – leading to real outcomes for patients
What difference will this make to the brain tumour community?
Brain tumours have been underfunded and neglected for too long. The proposals set out in the Bill will mean that there is a Champion for our community, who can interrogate decision making and current processes that leave patients with brain tumours and other rare cancers behind.
The proposals in the Bill align with our campaigning priorities to increase Government investment in research into brain tumours, build the research ecosystem to stimulate innovation and widen access to clinical trials.
How have we been involved?
We have been working with charity partners including The Brain Tumour Charity and Pancreatic Cancer UK, along with political consultants Havas/Cicero to help shape the Bill and to provide briefings for parliamentarians to help explain the importance of the Bill and the impact it could have on patients. You, our supporters, have played a critical role in this this – writing to your MPs and telling your stories. You have made this issue impossible to ignore.
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