Rare Cancers Bill

Debate between Luke Evans and Christopher Chope

Friday 11th July 2025 Commons Chamber

[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.

Anonymity of Suspects Bill

Debate between Luke Evans and Christopher Chope

Friday 28th October 2022 Commons Chamber

[Sir Christopher Chope]

Yes, we must pass on to the important subject of the anonymity of suspects. My interest in this subject arose because I attended a meeting of a relatively new organisation called Falsely Accused Individuals for Reform at about the time that I was preparing the private Members’ Bills that I might put forward for this Session. I was impressed by what was said at that gathering because, essentially, it is a campaign by people who have been falsely accused and whose lives have been completely wrecked as a consequence.

I will read what Sir Cliff Richard said to the meeting. As hon. Members will recall, he is Britain’s all-time biggest selling male artist with, I think, 22 million singles sold. He said:

“I am pleased to support the new pressure group Falsely Accused Individuals for Reform... Being falsely accused myself and having that exposed in the media was the worst thing that has happened to me in my entire life. Even though untrue, the stigma is almost impossible to eradicate. Hence the importance of FAIR’s campaign to change the law to provide for anonymity before charge in sexual allegations and hence my continued work with FAIR in the future. Had this proposed change in the law been enacted when the police decided to raid my apartment following the allegations of a fantasist, the BBC would not have been able to film this event, name me, (even though the South Yorkshire Police had decided not to) and so plunge my life and those close to me into fear and misery.”

[Dr Luke Evans (Bosworth) (Con)]

My hon. Friend is making an excellent point and the BBC was ticked off about what happened. What role do the media have to play with regard to the Bill, and how much accountability do they have in such instances?

[Sir Christopher Chope]

Clause 2 would apply to corporations the criminality associated with premature disclosure of somebody being a suspect. Had this Bill been on the statute book when the BBC used helicopters to film Sir Cliff’s residence from above, it would have applied to the controlling forces in the BBC. I think the BBC was ordered to pay Sir Cliff £210,000 in damages for breach of privacy. It was in August 2014 that the police did that, but it took a long time for Sir Cliff to be able to clear his name. It is clear that, even now, he still bears the scars of that ordeal, which should never have happened.

This Bill is designed to prevent other people from being similarly afflicted. If somebody makes an accusation anonymously and the police act upon it and tip off the media or brief social media, they destroy the principle that people are innocent until proved guilty and should be able to enjoy anonymity until such time as they might be charged with an offence.

[Sir Christopher Chope]

That is an enormous subject and the Online Safety Bill might provide my hon. Friend with an opportunity to raise it. This Bill is confined to the circumstances in which somebody is suspected of being guilty of a criminal offence and people close to the investigation abuse the process by making tip-offs and saying that they have been arrested. Quite often, they are never charged.

The Paul Gambaccini case is another example of a really serious situation. He was minding his own business when at 6 o’clock in the morning there was a raid on his house, and the fact that he had been arrested was communicated by the Metropolitan police to journalists. In the end, Paul Gambaccini was paid £250,000 by the Metropolitan police—£65,000 in damages, and the rest in legal costs—for breaches of privacy. The Metropolitan police also agreed to apologise for the disclosure of that private information.

The trouble with all of that is that it is after the event and it is only those who are most resilient and probably very wealthy who can actually afford to engage in the litigation that might follow such events. That is why I think it is better to have prevention rather than cure, and to deter that type of behaviour.

[Dr Luke Evans]

My hon. Friend is making good points about anonymity and innocent until proven guilty. However, with the likes of Harvey Weinstein, it was because of the publicity that victims came forward to prove how big the case was. How do we get the balance right between protecting those who are accused and ensuring that people can come forward if there is enough evidence out there, especially when it comes to the great and the powerful? How do we ensure that the balance is correct for both the victim and the accused?

[Sir Christopher Chope]

I have endeavoured to do that in the drafting of this Bill. That is why clause 1, which sets out the offence of disclosing the identity of a suspect, makes clear in subsection (1) that it is subject to the exceptions in subsection (2). My hon. Friend’s intervention is covered by the exceptions set out in subsection (2).

This is a balanced Bill. It is not just confined to cases of alleged sexual crimes, but applied to crimes in general, because, depending on the status of the person, the allegation that, for example, they are in hock to the Inland Revenue may be incredibly damaging to them. I know that HMRC is compliant with the principle that details about people’s tax affairs should not be disclosed, and that, it is one of the best organisations in meeting those very high standards. Sadly, though, other organisations are not so compliant.

I recognise that there are circumstances in which it is said that, by disclosing the person who is under suspicion, that may lead to other people coming forward. That should not be the case, and it certainly was not in relation to Cliff Richard, Paul Gambaccini and many others. That is why I have set out the exemptions in the Bill. Basically, the main exemption will be where the disclosure is reasonably necessary for the prevention or detection of crime, or for the administration of justice.

I am not saying that the Bill is perfect, but, because we do not have much time to discuss it today, I hope that my right hon. Friend on the Front Bench will agree to have a meeting to discuss it further, because this is a really serious subject. It would be useful to be able to discuss with him where we can go with this. There is much public feeling out there that something must be done. We cannot allow heroes in the country to be brought low by these allegations that then turn out to be false. Having the allegations ventilated in public has caused irreparable damage to the people adversely affected.

Another person who has been the subject of such false allegations is our former parliamentary Conservative colleague, Harvey Proctor. He has been put through the hoops twice on this, although, in the end, he received a pay-out of £800,000 from the police. But who ends up paying that? Of course, we do. Ultimately, his life has been completely wrecked as a result of the false allegations made against him on two separate occasions. He did not have much in terms of resources. He was not in a position on his own to be able to seek redress. I mention his name, because he was not a great star in the media or on television who had resources. Even for Paul Gambaccini, immediately this information came out into the open, he was suspended from being able to do his radio programmes on the BBC. He lost a whole year’s work.