Hi again,
As well as raising awareness of rare blood cancers today, Blood Cancer UK’s policy team are working to support the Rare Cancers Bill in Parliament. MPs will have the chance to vote for it on 14 March and if you’re in the UK, we need your help to encourage them to do so.
We’ll have more information on our website next week, but if you are in the UK and would like to find out more, read on and please do feel free to ask any questions you have in the comments…
About the Rare Cancers Bill
Scott Arthur MP has introduced a Private Members Bill, a potential new law, with the aim of incentivising research and investment into the treatment of rare cancers. Blood Cancer UK has been working with Scott and several other cancer charities to drive this forward.
On the 14th March this Bill will have its Second Reading – which is where MPs will have the chance to debate and vote for it. To guarantee its passage to the next stage of the process, it needs 100 MPs to support it.
As it is a Private Members Bill, rather than a piece of Government legislation, the vote will be held on a Friday. Votes aren’t usually held on a Friday, so MPs are less likely to be in Parliament.
This is where we need your help – by letting your MP know how important this Bill is and asking them to vote for it.
You can find who your MP is and their email address here:
https://members.parliament.uk/FindYourMP
Below is a template letter you can use in your email. You MUST include your name and postcode so they know you are a constituent.
You can copy and paste the text from our forum and if you have any problems doing so, please let us know in the comments and we’ll help.
Letter/ email text:
RE: Attend the Second Reading of the Rare Cancers Bill
**[Your Name] **
**[Your Address] **
**[Your Postcode] **
[Your Email]
Dear [MP Name],
As your constituent, I am urging to you to back the Rare Cancers Bill, Dr Scott Arthur MP’s Private Members’ Bill that is due for second reading on Friday, 14 March in the House of Commons.
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.
The Rare Cancers Bill has been produced in conjunction with leading UK Cancer Charities, including Blood Cancer UK. 280,000 people live with or are in remission from blood cancer in the UK and there are over 100 different types, with some rarer than others. Surgery and radiotherapy are rarely used in the treatment of blood cancer, meaning that anti-cancer treatments, like chemotherapy and immunotherapies, are often the main option. Clinical trials can offer vital access to new drugs.
This Bill offers new hope for those diagnosed with rare cancers, with a plan to incentivise cutting-edge new research.
The Rare Cancers Bill will:
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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.
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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.
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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 by attending the second reading and supporting its passage through Parliament.
Please CC policy@bloodcancer.org.uk in your response, as they are tracking which MPs are supporting the Bill.
Yours sincerely,
[Your Name]
