A huge step forward for the Rare Cancers Bill

14 March was a huge moment for research into pancreatic cancer, as the Rare Cancers Bill took another big step towards becoming a law! Thank you to all our amazing supporters to helped to make this happen.

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

Thanks to over 2,400 of our amazing supporters to asked their MP to support the Bill, it received strong support from MPs who attended the debate on Friday 14 March.

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. 

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 would the new law do?

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.