Rare Cancers Bill

Martin Rhodes Excerpts

Friday 14th March 2025 Commons Chamber

[Martin Rhodes (Glasgow North) (Lab)]

We have already heard so much moving and powerful testimony in this debate, but despite the tragic impact that rare cancers have on people across the UK, they garner too little attention, are under-researched and lack investment in their treatment. Though cancer survival rates rose by nearly 10% between 2005 and 2020, rare cancers still have some of the lowest survival rates, leaving too many people without hope.

I thank the hon. Member for Edinburgh South West (Dr Arthur) for introducing this Bill. I will argue in favour of it today, using three examples: first, the story of a constituent suffering from a rare cancer; secondly, the importance of this Bill for extremely rare cancers; and, lastly, its importance for future research.

There are many rare forms of cancer that individuals suffer, often without specialised treatments or public awareness, but every rare cancer patient has a name and a story. Take that of a constituent I recently met in Parliament at an event for World Cancer Day, who suffers from T-cell large granular lymphocytic leukaemia. Although the five-year survival rate for leukaemia currently stands at 55%, the figure for acute myeloid leukaemia, a rare and aggressive form, is one of the lowest of all cancers. It has a 22% survival rate beyond five years after diagnosis. This means that, sadly, nearly 80% of those diagnosed with AML today will not survive until the end of this Parliament. Surgery is not a viable treatment option for those diagnosed with leukaemia, so such patients often depend on the discovery of new and innovative treatments to survive the disease.

Though every cancer has a name and a story, some are so rare that there is little representation of them, even in debates like this. That brings me to my second example: composite hemangioendothelioma, or CHE. It was first medically identified in only 2006, and by 2022 had fewer than 60 cases reported in English-language literature. Because of its rarity, it is hard to treat and garners little attention from companies that could develop treatments. However, those affected by CHE have names, families and stories. Hopefully, my mentioning CHE in this debate may, in a small way, help raise awareness of its existence. This Bill will assist us in this matter, as it will result in the appointment of a named person who is responsible for overseeing the delivery of research into rare cancer treatments. That will facilitate some political accountability for rare cancer research and encourage an ecosystem that can hopefully lead to future treatments for, or at least more attention to, even some of the rarest cancers, such as CHE.

Talking of treatments, earlier this week, I met a constituent who is a researcher at the University of Glasgow. She was in Parliament for the STEM for Britain exhibition. We discussed her research on a novel approach to treating osteosarcoma. Although it is the most common primary bone cancer, only 160 people are diagnosed with osteosarcoma each year in the UK—fewer than three people in every 1 million of the population—making it a rare cancer under the Bill. Current treatments lack specificity in targeting the tumour and often have unwanted side effects. My constituent’s research looked at the potential use of small molecules to create a more effective and non-invasive treatment for osteosarcoma. The Bill’s support for information sharing in the research registry system will help researchers like my constituent. It will help with research and clinical trials by giving researchers greater access to the patient population with rare cancers like osteosarcoma. A patient survey in 2024 found that 82% of those with a rare or less common cancer were not offered a clinical trial. That is why the Bill is important.

The Bill will help to foster an environment in which there can be more research and clinical trials on rare cancers such as osteosarcoma. For patients like my constituent suffering from t-cell large granular lymphocytic leukaemia, for those diagnosed with the least-understood cancers, and for the researchers trying to find new treatments, the Bill represents a commitment to the fight against rare cancers. I therefore urge the House to support my hon. Friend the Member for Edinburgh South West and the Bill today.