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Help Support the Rare Cancers Bill – Email Your MP 💜

 

There is a Rare Cancers Bill which is about to be discussed in UK Parliament on the 14th March. We are asking for 5 minutes of your time to help us email your MP with a request to support the Bill. 

 

The aim of the Bill is to incentivise research and investment into the treatment of rare cancers.  

It will achieve this by: 

 

 

1. Placing a duty on the Government to further support research and innovation for rare cancers. 
2. Placing a duty on the Government to review the Orphan Drug Regulations, with respect to rare cancer patients. 
3. Ensuring that patients can be easily contacted about relevant research and clinical trials. 

 

(More specific information can be found here: https://bills.parliament.uk/bills/3779 and here https://drscottarthur.scot/2025/02/02/the-rare-cancers-bill-private-members-bill/)

 

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Please cut and paste the template text below into an email:

 

[MP's Name]
House of Commons
London SW1A 0AA
 
Dear [MP's Name] MP,
Subject: Please support the Rare Cancers Bill

My name is XXXXX and I am one of your constituents, my address is
[Your Address]
[City, Post Code]
[Email Address]

 

I am writing you, as my MP, to ask if you will support the Rare Cancers Bill, due to have its second reading on the 14th of March. Despite overall cancer survival rates rising by nearly 10 per cent between 2005 and 2020, rare cancers account for many of the lowest rates of survival, with some having a 1-year survival rate of less than 50 per cent.

 

The aim of the bill is to incentivise research and investment into the treatment of rare cancers and begin to close this gap. 

This Private Members’ Bill has been proposed by Dr Scott Arthur MP and is inspired by his father-in-law who sadly died of a glioblastoma in 2018, only six months after diagnosis. 

 

I am a person with a rare cancer called Leiomyosarcoma.  [OR SAY I AM SUPPORTING A LOVED ONE WITH LEIOMYOSARCOMA and insert a few words re your personal story here to bring this to life for the MP. This is likely to increase your MP’s motivation to take an active role in supporting the bill.]

 

Leiomyosarcoma has an annual incidence rate of about 9.59 cases per million people in the UK. One of the challenges with this cancer is its genetic variability – it has many different subtypes. In the United States, whole genomic testing is used to identify mutations that can be targeted with existing drugs, offering more personalised treatment options. 

This approach is working well for patients, as their oncologists can access drugs used in other cancers to target these mutations. For example, a PARP inhibitor and immunotherapy are being used for Leiomyosarcoma patients with a BRCA2 mutation, successfully utilizing targeted medicine.

 

Personalised medicine is particularly important for rare cancers with different subtypes. Due to the low number of patients with Leiomyosarcoma, it is extremely difficult, if not nearly impossible, to run robust clinical trials for the subsets of Leiomyosarcoma. This is before even considering the financial motivation of drug companies for funding trials.

 

Even with an increase in genetic testing, in the UK it remains challenging to use the results practically in clinics, as oncologists do not have a route to access these drugs.

 

I am asking you as my MP to advocate for:

 

• Recognising the potential of targeted mutation treatments through genetic testing for rare cancers.
• Allowing UK oncologists to test for genetic weaknesses by carrying out Whole Genomic Sequencing
• Where appropriate to access appropriate approved ‘orphan’ drugs, without waiting for further clinical trials, which, for the reasons outlined above, are impractical for rare cancers.
• Supporting the bill to create commercial benefits for drug companies to include rare cancers in their trials. For instance, with the advancement of mRNA vaccines and other exciting new cancer drugs, this is the perfect opportunity for rare cancers with limited options to be tested near the front of the queue rather than the back.

 
Thank you so much for reading my letter. I really hope you will be an active member of Parliament in helping shape the Rare Cancer Bill, and that my letter has contributed to this effort.

 

Kind Regards
[Your Name]

 

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You can find your local MP’s email/ details here: 
https://members.parliament.uk/FindYourMP

 

You can find a Word Document version of the email here.

 

Thank You!

 

This small action could lead to major change. Every email sent increases the chance of this Bill passing, bringing hope and better treatment options for rare cancer patients 💜

 

If you can, please share this page with others—it would mean the world to us!