The Rare Cancers Bill is due for its third reading in Parliament this Friday – much sooner than expected.
This is a vital opportunity to push for change that could improve outcomes for people diagnosed with rare cancers, including sarcoma.
We’re asking supporters to contact their MPs urgently and encourage them to attend. It only takes a minute using WriteToThem – just enter your postcode to contact all your MPs at once. We’ve included suggested wording to make it as quick and effective as possible.
Write To Them
Dear [MP Name],
I am writing to you as one of your constituents and someone who has been personally affected by sarcoma – a rare and often aggressive form of cancer that can affect any part of the body. [Feel free to add more on your experience here.]
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, by attending its third reading in the House of Commons this Friday 11th July.
Rare and less common cancers account for 47% of all UK cancer diagnoses, and 55% of all cancer deaths. Sarcoma makes up 5300 of these diagnoses a year, of which only 55% will survive past five years. Despite these stark figures, sarcoma and other rare 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:
- 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, 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 am asking you to represent my voice as someone affected by sarcoma and declare yourself supportive of the Rare Cancers Bill by attending its third reading on Friday.
Please CC policy@sarcoma.org.uk in your response, as they are tracking which MPs are supporting the Bill.
Yours sincerely,
[Your Name]
