Rare Cancers Bill

Luke Evans Excerpts

Friday 11th July 2025 Commons Chamber

[Madam Deputy Speaker (Ms Nusrat Ghani)]

I call the shadow Minister.

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

I rise to speak on behalf of His Majesty’s official Opposition in support of the Rare Cancers Bill, and to welcome its thoughtful and necessary intervention on behalf of a group of patients who have been under-researched, under-represented, and under-acknowledged for too long. I commend the hon. Member for Edinburgh South West (Dr Arthur) on bringing this Bill forward, and on his ongoing dedication to the issue.

The case for the Bill is clear: rare cancers—defined, in line with the UK rare diseases framework, as conditions affecting fewer than one in 2,000 people—are individually uncommon but collectively account for more than 20% of all cancer diagnoses. However, as we know, patients with rare cancers routinely face delayed diagnosis, limited treatment options and far fewer opportunities to participate in clinical research.

The Bill does not claim to be a silver bullet, but it does mark a significant step forward in how we think about and legislate for research, regulation and data access in rare cancer care. It is focused, proportionate and strategically aligned with the existing NHS and National Institute for Health and Care Research frameworks.

Clause 1 places a duty on the Secretary of State to carry out a review of the law relating to marketing authorisations for orphan medicinal products that are for the diagnosis, prevention or treatment of cancer. It also rightly requires that the review includes comparisons with regulatory approaches in other countries. This is vital. The explanatory notes rightly observe that research into rare cancers is often commercially unattractive because of small patient populations and high developmental costs. If our regulatory environment creates further barriers to entry, patients suffer—not because the science does not exist but because the system does not support it.

The UK’s current approach to orphan designation lacks the pre-authorisation incentives found in systems such as the European Medicines Agency and the US Food and Drug Administration. The review required under the Bill is the opportunity to ask whether we are doing enough to attract the research and development that rare cancer patients deserve.

[Sir Christopher Chope]

I am not quite sure whether my hon. Friend is responding to the amendments or making a Third Reading speech. I hope he will address the amendments I have tabled, including those that relate to clause 1, about which he has just spoken.

[Dr Evans]

If my hon. Friend bears with me, I will turn directly to his amendments. It is important to first set out the context, because we must understand the clauses if we are to debate the amendments to them.

Clause 2 makes crucial changes to the Secretary of State’s duty under the National Health Service Act 2006 by stating explicitly that it must include research into cancers that, in the opinion of the Secretary of State, are rare. Although this matters, the research agenda is often driven by numbers and funding scales. By mandating that rare cancers be part of the agenda, the Bill begins to shift the culture towards inclusion, equity and long-term thinking.

I particularly welcome the creation of the national specialty lead for rare cancers, modelling the NIHR’s existing structure of research delivery leaders. This individual will be tasked with promoting and facilitating research, advising on trial design and convening collaboration. The success of this role will depend on it not just being symbolically supported but having a clear remit, adequate funding and a strategic alignment with the wider NIHR research delivery network.

Clause 3 amends section 261 of the Health and Social Care Act 2012 to allow NHS England to disclose information from cancer registries for the purpose of identifying and contacting potential clinical trial participants. This is a significant and necessary step. The Bill distinguishes between a disease registry, like the National Disease Registration Service, and a contact registry, such as Be Part of Research. Making sure that these systems can speak to each other will be of significant benefit when it comes to matching patients with opportunities. Importantly, the clause reaffirms that any such data sharing must remain compliant with the Data Protection Act 2018. As proposed new subsection 6A to the 2012 Act makes clear,

“A power conferred by this section to process information does not authorise the processing of information which would contravene the data protection legislation”.

This is a safeguard that we must preserve, not weaken, if we are to maintain public trust in the system.

At this point I turn to the amendments tabled by my hon. Friend the Member for Christchurch (Sir Christopher Chope). He approaches private Members’ Bills in the way that a jeweller examines diamonds—with a magnifying glass, a steady hand and absolutely no tolerance for flaws. We may grumble as the clock ticks on, but deep down we all sleep better knowing that he is reading the footnotes. This Bill is no different; he has approached it with rigour, and I thank him for his commitment to precision and improving clarity and accountability. As he pointed out, the Bill is not trivial. Therefore, it is not only right, but indeed the duty of this House, to scrutinise closely legislation and amendments laid before us.

To that end, several of the amendments aim to tighten the Bill’s drafting or introduce firmer deadlines. For example, amendment 4 would reduce the timeframe for the review under clause 1 from three years to two. Amendment 2 would require the Secretary of State to

“set out a timetable for implementing any changes in the law recommended by the review.”

I understand the concern that reviews can drift, but the three-year period reflects the complexity of the subject: a UK-wide review of the Human Medicines Regulations 2012, including benchmarking against other jurisdictions and engaging multiple agencies. Compressing the timeline might jeopardise the depth or quality of the analysis. Likewise, a statutory timetable for implementation could constrain the Government prematurely, before the review’s conclusions are even known.

[Sir Christopher Chope]

I am very grateful to my hon. Friend for his unprompted comments. He will know that the funding is sufficient to staff the review only for one year. If there is only funding for one year, why does it take three?

[Dr Luke Evans]

My hon. Friend knows, far better than I, not to look at legislation in isolation. The Government will at some point bring forward the cancer plan, which will have a direct crossover with the Bill, so it is right to give the Government the freedom and space to implement the legislation. If we rush it, we could get it wrong, which would be even more detrimental for those who suffer with rare cancers.

Other amendments address definitions and discretion. For example, amendment 5 would remove

“in the opinion of the Secretary of State”

from the definition of rare cancer, and amendment 8 would remove similar wording in relation to NHS England’s discretion. At first glance, the amendments may seem like matters of tidy drafting, but retaining discretion is important, especially as regards rare cancers. Prevalence data can be uncertain or lagging, and flexibility allows for expert judgments about edge cases in which rigid definitions may unintentionally exclude patients from trials or research that could benefit them.

On top of that, there are concerns even about simple definitions. We are still exploring the difference between, for example, pre-cancerous and cancerous cells. If someone goes for a smear, that is what they are told. This is a new area. Who knows what will come up in the future? Simply defining rare cancers on the basis of lagging prevalence data is a risk, and it is therefore right that the Government and the Secretary at State have discretion to direct in one way or another.

However, I would grateful if the Government would answer the question, which has been rightly posed, of who or what will fill the role when NHS England is abolished. It is not clear exactly what that will look like. I have asked the Minister this question several times, in relation to the Mental Health Bill and other areas, and it is a question that this House should rightly ask. Who will be responsible for what, when and why?

That said, amendment 7, which would ensure that the proposed national specialty lead is appointed within six months of Royal Assent, deserves serious consideration. Patients have waited long enough. If the Government are confident that the post can be established promptly and resourced effectively, I would welcome that ambition being stated at the Dispatch Box today.

Finally, I must express my concern about amendment 9, which proposes to remove the data protection safeguard in clause 3(4). Although the provision may be declaratory, in that it reaffirms existing legal obligations, it none the less offers clarity and reassurance. In an area as sensitive as health data, such clarity matters, and the subsection’s removal could cause unnecessary concern, even if the underlying law remains unchanged.

In conclusion, this Bill is not about grandstanding. It is modest in financial cost, careful in its drafting and realistic in its scope, but its impact could be significant. For patients living with rare cancers, and clinicians and researchers striving to support them, the Bill offers real hope—hope for faster access to innovation, hope for more inclusive research and hope for a regulatory system that works for the many, not just the minority. Every patient matters, whether they are one in two or one in 2,000. As we stated on Second Reading and in Committee, we support the Bill, and I thank the House for giving me the chance to explain why.

--- Later in debate ---

[Dr Luke Evans]

I again thank the hon. Member for Edinburgh South West (Dr Arthur) for his tireless work on this important Bill. It has united the House, and rightfully so, because it speaks to something fundamental: the need for people with rare cancers to be seen, heard and addressed.

The Opposition have supported the Bill from the outset, and as the shadow Secretary of State, my right hon. Friend the Member for Melton and Syston (Edward Argar), and my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson) have said, we will continue to do so today. We would like to thank the charities and campaigners who have worked tirelessly to bring this issue forward: Pancreatic Cancer UK, the Brain Tumour Charity, Cancer52 and many more. Their work has helped to put rare cancers firmly on the agenda, and this Bill is part of their legacy.

I have been on the other side of this, delivering the news, particularly when I worked on an upper gastrointestinal hospital ward as a junior doctor. Delivering the news that someone has pancreatic cancer is one of the toughest things I have ever had to do, and it is worse still for the relatives who have to receive that news. I long for a day when no doctor has to deliver a death sentence to a patient, and this Bill brings that a step closer.

My hon. Friend the Member for Sleaford and North Hykeham spoke in Committee about the repurposing of drugs, and I want to highlight its importance. Treatments that were developed for other conditions may be lifesaving for people with rare cancers. It is vital that the Bill’s scope allows for innovation to thrive. Conservative Members urge the Government to embed the provisions of the Bill in the forthcoming national cancer plan. I hope the Minister will confirm that that will happen, and hopefully he will tell us when it will be published.

Finally, as the expert jeweller, my hon. Friend the Member for Christchurch (Sir Christopher Chope) said on Report—his keen eye for a flaw is important—there is the glaring problem of the pending abolition of NHS England, which poses practical questions about data sharing and, of course, oversight. Conservative Members will do all we can to ensure that the legislation remains workable under the new structures, and I hope the Government will do that too.

The Bill will not solve everything overnight, but it is a serious step forward and a statement that even the rarest conditions deserve our fullest attention. As Maya Angelou said,

“when you know better, do better.”

The House knows better, thanks to the tireless work of the hon. Member for Edinburgh South West, and the Bill will help ensure that we do better too.