Rare Cancers Bill
Martin Rhodes Excerpts(3 days, 8 hours ago)
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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.
Oral Answers to Questions
Martin Rhodes Excerpts(2 months, 1 week ago)
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Martin Rhodes (Glasgow North) (Lab)
The Secretary of State for Health and Social Care (Wes Streeting)
This Government recognise the crisis in social care that we inherited, which is why over the past six months we have taken steps through the Budget to increase investment in social care, deliver the biggest expansion of the carer’s allowance since the 1970s and invest in the disabled facilities grant. Of course, as my hon. Friend alludes to, we cannot deliver great social care without the workers who deliver it. That is why I am proud that within our first 100 days, the care worker-turned-Deputy Prime Minister included fair pay agreements in her landmark Employment Rights Bill, so we can give our care staff not just the pay they deserve, but the professional status, recognising the hard work they do as care professionals. That is a crucial step on our path to building a national care service.
Martin Rhodes
Does the Secretary of State agree that the SNP’s National Care Service (Scotland) Bill was a missed opportunity to improve pay and conditions for social care workers, particularly when compared with Labour’s Employment Rights Bill, which creates the fair pay agreement for social care workers?
Wes Streeting
I agree with my hon. Friend. I am proud that this Government have taken quick action within our first 100 days. Thanks to the Employment Rights Bill, which is UK-wide legislation, this Labour Government in Westminster are giving the Scottish Government the tools they need to do the job of establishing fair pay for care staff. If they do not do it, Anas Sarwar and Jackie Baillie will.