How so-called 'rare' cancers are surprisingly common and a new law will give fresh hope
By greater pooling of data, the UK can become the global hub for clinical trials of potential new treatments for rare cancers
When my father-in-law, Ivor Hutchison, was diagnosed with glioblastoma, our family was blindsided. He was a man full of life, yet within just six months of that devastating news, he was gone. At the time, we simply thought it was ‘bad luck’, an unusual diagnosis that no one could have predicted or prevented.
It wasn’t until I entered Parliament and met my colleague Siobhain McDonagh MP that I began to grasp just how many people are impacted by glioblastoma, and other so-called ‘rare’ cancers.
Siobhain, who lost her sister, Margaret, to the exact same aggressive brain cancer had been campaigning for years to highlight a clinical reality that few outside the medical community realise: rare cancers actually aren’t that rare, making up just under a quarter of all cancer cases diagnosed in the UK and Europe.
Lack of investment
While we have seen miraculous leaps in survival rates for ‘common’ cancers such as breast cancer and leukaemia, treatments for rare cancers like brain tumours and pancreatic cancer have remained virtually unchanged for two decades. This is due to a systemic lack of investment, combined with a research landscape that, for too long, has treated ‘rare’ as a synonym for ‘low priority’.
Today, we have taken a significant step towards fixing that broken system. My Private Members’ Bill – the Rare Cancers Bill – passed its third reading in the House of Lords on Friday. It is a once-in-a-generation opportunity to ensure that a rare diagnosis no longer equates to a lower chance of survival.
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The Bill tackles the vicious cycle of rare cancer research through three transformative mandates. First, it requires a named responsible lead for rare cancer research to ensure national accountability. Second, it demands a review of Orphan Drug Regulations to incentivise pharmaceutical companies to innovate for smaller patient groups.
Finally, it unblocks the data bottleneck, ensuring patient registries across the UK share information with the ‘Be Part of Research Registry’. By pooling our data, we can make the UK the global hub for rare cancer clinical trials.
Working across borders and party lines
While health is a devolved matter, the research ecosystem and drug-regulation frameworks are deeply interconnected across our four nations. I am therefore heartened that the Scottish Government has agreed to implement and align with the Bill’s objectives without the need for separate legislation, following the lead of Northern Ireland, which has already passed a legislative consent motion.
This cross-border cooperation proves that when it comes to the lives of our citizens, political boundaries must come second to progress.
I have sponsored the Bill through the Commons, but this milestone really belongs to the tireless campaigners at Brain Tumour Research, Pancreatic Cancer UK, the Brain Tumour Charity and so many more charities working in the rare cancers space. Their expertise and indefatigability have driven this Bill across the line.
We can’t transform the healthcare system overnight. But by passing this Bill, we are ensuring that, for the thousands of families who will face a rare cancer diagnosis this year, there is a real sense of hope and meaningful progress.
Dr Scott Arthur is the Labour MP for Edinburgh South West
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