Act Now: The Rare Cancers Bill is at Risk
We need your help to ensure the Rare Cancers Bill passes its third reading.
After months of cross-party support and progress, the Rare Cancers Bill is now at serious risk of collapsing. We urgently need your help to make sure it passes.
On Friday 11 July, the Bill returns to the House of Commons for its Third Reading the final opportunity for MPs to back this transformational piece of legislation. But a last-minute amendment has been submitted that could trigger a vote, and if not enough MPs are present in the chamber, the Bill could collapse.
About the Bill
The Rare Cancers Bill sets out to remove systemic barriers to research and innovation by:
1. 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.
2. 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.
3. 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, registry.
Introduced by the Scott Arthur MP, the bill will be crucial to improving access to clinical trials for those living with rare and less common cancers - including childhood cancers like neuroblastoma.
Please write to your MP
Please email your MP today using the template letter below, and urge them to attend the debate and vote in favour of the Bill. Every MP’s presence counts!
The Rare Cancers Bill - Letter to your MP
RE: The Rare Cancers Bill
[Your Name]
[Your Address]
[Your Postcode]
[Your Email]
Dear [MP Name],
As your constituent, I am urging to you to declare yourself supportive of the Rare Cancers Bill, Dr Scott Arthur MP’s Private Members’ Bill.
Rare and less common cancers account for 47% of all UK cancer diagnoses, and 55% of all cancer deaths. Despite these stark figures, these cancers are disproportionately underdiagnosed and opportunities for patients to register for clinical trials for new medicines are few and far between.
Other countries have taken measures to incentivise pharmaceutical companies to invest in clinical trials for rare cancers and the UK has fallen behind. This means that Rare Cancer patients in the UK are missing out on potentially life saving clinical trials, with a recent survey from Cancer52 showing a staggering 82% of those with rare and less common cancers were not consulted on joining a clinical trial.
With the complex nature of these tumour types, and the limited patient population, if we want to take the fight against rare cancers to the next level, the UK needs to provide better encouragement to pharmaceutical companies to run trials.
This Bill offers new hope for those diagnosed with rare cancers, with a plan to incentivise new, cutting-edge research.
The Rare Cancers Bill will:
1. 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.
2. 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.
3. 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, registry.
As your constituent, I strongly believe that supporting this Bill is a crucial step toward improving outcomes for those affected by rare cancers. I urge you to represent the voices of those living with these devastating conditions and declare yourself supportive of the Rare Cancers Bill.
Please CC campaigning@braintumourresearch.org in your response, as they are tracking which MPs are supporting the Bill.
Yours sincerely,
[Your Name]
