Our chance to transform cancer research through law

We’re excited to be supporting the Rare Cancers Bill, a new potential law, which is due to be debated in the House of Commons this March.  

Dr Scott Arthur, a Labour MP, has brought this legislation forward in Parliament to drive desperately needed research into cancers that affect fewer than 1 in 2000 people in the UK. 

Half of people diagnosed with pancreatic cancer in the UK today die within three months. We believe this Bill has the potential to improve survival rates for pancreatic cancers and other cancers that have been left behind.   

Ask your MP to back the Bill

How the Bill came about:  

The Bill has been proposed by Dr Scott Arthur MP (Edinburgh South West), whose father-in-law, Ivor Hutchison died of glioblastoma, a type of brain cancer, and one of the less survivable cancers, in May 2018. Ivor died just six months after he was diagnosed.  

We have long campaigned with our supporters for more investment in research for pancreatic cancer and the less survivable cancers. And after our General Election campaign, two political parties pledged to bring forward legislation on research.  

Now, we’re proud to be working closely with Dr Scott Arthur MP, The Brain Tumour Charity, and other coalitions working on less survivable and rare cancers, to turn all this momentum into real change. We’re uniting to ask MPs to support this Bill through Parliament so that it becomes law.

Dr Scott Arthur was able to put this forward as a Private Members’ Bill. These are proposed laws introduced by MPs who aren’t government ministers. While they’re a vital way for MPs to raise important issues and change the law, these Bills face significant hurdles.  

Private Members’ Bills can only be debated on certain Fridays, and they need at least 100 MPs to be present for a vote to happen at Second Reading – the crucial first debate of the Bill in the Commons. Without enough MPs attending, the Bill could fail at this early stage, which is why it’s so important that as many MPs as possible attend the debate on March 14th to show their support and help this vital legislation move forward. 

Yes, I’ll ask my MP to support the Bill

Will the Bill support people with pancreatic cancer? 

Yes. If it becomes law, this Bill could represent a significant breakthrough for people affected by pancreatic cancer and finally bring this long-overlooked disease the attention and investment it deserves. 

It would be the first law of its kind in the UK, and the first law to specifically seek improvements for pancreatic cancer. 

While pancreatic cancer is a more common cancer, it is considered a rare disease because around 1 in 6000 people in the UK are living with pancreatic cancer. This means it is covered by this Bill, which focusses on cancers which affect fewer than 1 in 2000 people. In fact, five of the six less survivable cancers that we campaign on as part of the Less Survivable Cancers Taskforce are considered rare diseases by this definition and could also be transformed by the Bill: liver, stomach, oesophageal, brain and liver cancers. 

What the new law would do:  

If put into law, the Rare Cancers Bill has the potential to transform survival for these cancers by encouraging a greater focus and drive in research on these areas. The law would:  

• Ensure there’s a named lead in government with a responsibility to support research and innovation for these cancers. As it stands, cancers like pancreatic cancer often struggle to attract research funding and attention compared to other diseases. A named lead would ensure there’s a strategic focus on rare cancers in government for the first time. This would help to coordinate efforts, look at gaps in a comprehensive way and ensure these cancers become and remain a priority.   

• Ensure patients can get better access to and find out about relevant research and clinical trials. Currently, many patients with rare cancers miss out on potentially life-extending clinical trials simply because they don’t know about them. The current system makes it difficult to match eligible patients with appropriate trials, meaning trials can struggle to recruit enough participants and potentially promising research can’t move forward. 

• Place a duty on the Government to review (and potentially strengthen) “Orphan Drug Regulations”. The Orphan Drug Regulations aim to incentivise research into rare diseases, for example through tax credits and fee waivers. The current incentives for pharmaceutical companies to develop treatments for rare cancers aren’t strong enough. Developing new drugs is expensive, and companies often focus their resources on more common diseases where they can reach more patients. This review could help drive more investment into rare cancer research in the future.