Rare Cancers Bill

Scott Arthur Excerpts

Committee stage
Wednesday 2nd July 2025 Public Bill Committees

[The Chair]

With this it will be convenient to consider clauses 2 to 6 stand part.

[Dr Scott Arthur (Edinburgh South West) (Lab)]

It is a pleasure to serve under your chairship, Mr Stuart. I was happy with the unanimous cross-party support that the Bill received on Second Reading and look forward to examining it in detail today.

The term “rare cancer” might imply that this is a relatively niche issue that is unlikely to have an impact on many of us, but the reality is that 47% of cancers diagnosed in the UK fall within the “rare and less common” category, and they account for 55% of all cancer deaths. That second statistic is partly due to the survival rate—five out of six less survivable cancers are also rare cancers—but survivability is not just a function of the aggressiveness of the cancer. It also depends on the treatment options available, and for less survivable cancers the options are limited. They receive a mere fraction—roughly 16%—of the funding that more survivable cancers receive.

At this point, I should clarify that I have had some contact with a charity that represents younger people. It is the case that the Bill covers younger people and that all childhood cancers are rare.

The situation is unlikely to change without Government intervention. Markets encourage pharmaceutical companies to prioritise the highest return on investment. Inevitably, that favours the development of drugs with the largest potential patient pools. When a company does pursue taking a rare cancer drug to market, having to access a limited patient pool can make the creation of sufficiently robust studies and trials a struggle.

The Bill is an attempt to intervene on behalf of patients and their families, and to enable pharmaceutical companies and the Government to re-evaluate the strategies for funding, research and finding treatments. It has been drafted carefully in consultation with a wide range of cancer charities—I am pleased to see a few of them represented in the Public Gallery—and expert bodies. The Bill reflects the solutions that scientists, doctors and those with lived experience think are necessary.

In practical terms, by passing this legislation we can, first, remove the barriers to participation in potentially lifesaving clinical trials; secondly, drive investment in under-resourced yet vital drugs and treatments; and thirdly, enhance connectivity between various organisations and individuals working to find cures. That last one is an incredibly important point. I have attended many meetings of the all-party parliamentary group on brain tumours, chaired by my hon. Friend the Member for Mitcham and Morden; we often we see that those connections are not being made, and we all lose as a result.

Clause 1 will enable regulations to be made that compel the Secretary of State for Health and Social Care to conduct a review of the marketing authorisations for orphan medicinal products for the diagnosis, prevention or treatment of cancer, and to prepare and publish a report setting out the conclusions of that review. I have never been a great fan of the term orphan drugs, which refers to drugs for rare conditions. The clause provides that the review process will specifically consider the regulatory approaches adopted in other countries. That will help to avoid research and patients in this country losing out.

The clause sets a timeframe for the publication of the report, namely within three years of the Bill being passed. We consulted broadly on that three-year point. We obviously all want to see progress on this issue as quickly as possible, but we have to balance that against the need for the review to be authoritative and impactful. That is where the three-year duration comes from, but I recognise that some people want it to move faster. A review of best practice at international level should surface a variety of effective strategies that the Government could consider implementing to drive pharmaceutical industry investment into lifesaving research and treatments.

Clause 2 will enable regulations to be made that will encourage the Secretary of State to facilitate, or otherwise promote, research into rare cancers. The clause will specify that the Secretary of State must ensure that arrangements are in place that will, first, enable potential participants in clinical trials to be identified and contacted, and secondly, ensure that a person—to be known as the national speciality lead for rare cancers—is appointed to promote and facilitate research into rare cancers. That person will hold an advisory and facilitatory role, offering input on the design and planning of research, as well as building collaborative networks between key bodies and individuals. Appointing a specific individual to hold that role will provide a structure for greater accountability and a more strategic approach for the delivery of rare cancer research across different organisations.

Clause 3 will enable regulations to be made that will facilitate data sharing in the context of contacting and identifying potential participants in clinical trials that are focused on orphan medicinal products for the diagnosis, prevention and/or treatment of rare cancers. The clause does not authorise the processing of information that would contravene existing data protection legislation. The twin benefits to enhanced data sharing are a greater access to clinical trials for patients, which could be lifesaving, and more higher-quality trials taking place in the UK as a result of a larger potential participant population for researchers.

Clause 4 explains the territorial extent of the various clauses. Clauses 2 and 3 will extend to England and Wales only, while the remainder of the Bill extends to England, Wales, Scotland and Northern Ireland. Where the Bill does not extend to the entirety of the UK, we have been assured by the devolved Governments, which were consulted during the Bill’s formulation—I thank Department of Health and Social Care colleagues for that—that they will work alongside us to achieve the policy goals it outlines within the context of their unique legal landscapes. In that regard, I acknowledge the work of the hon. Member for South Antrim to ensure that Northern Ireland generally, and his constituents specifically, benefit from the Bill.

Clause 5 will provide for commencement, which will occur two months after the Bill is passed, and clause 6 provides the short title for the Bill.

I hope the Bill has real impact, because so many people in the charity sector and elsewhere are working so hard to raise often small amounts of money, which they hope will have a big impact. I hope the Bill amplifies their work and helps it to go further. I look forward to Committee members’ contributions to the discussion of this important Bill, and I commend the clauses to the Committee.

[Robin Swann (South Antrim) (UUP)]

It is a pleasure to serve under your chairship, Mr Stuart. I thank and congratulate the hon. Member for Edinburgh South West on bringing forward this private Member’s Bill, which will have life-changing effects for many individuals across the entirety of the United Kingdom. I applaud him for it, because I know some of the driving reasons behind him doing that.

I have a couple of points to make about the Bill. I am fully supportive of it, but I note the geographical challenge it brings. The Northern Ireland Assembly passed a legislative consent motion for clause 1 on Monday, so we are already stepping into line for this legislation. Much of the relevant work was discussed in the Northern Ireland cancer strategy, which was published in 2022 when I was Minister of Health there. It looked at our specific challenges with regard to research and clinical trials. At that point, cancer charities highlighted that only 15% of cancer patients in Northern Ireland are offered the opportunity to take part in cancer trials, compared with 31% across the rest of the UK. I hope the Bill increases awareness among Northern Ireland patients and cancer sufferers, and their families, of what is out there and their ability to take part.

The other concern often raised by some of my Northern Ireland colleagues—you are aware of this, Mr Stuart—is the EU implications. I can state that novel treatments do not fall under the scope of the EU, so hopefully any medication, treatment or supply that comes forward will be equally accessible and applicable to the entirety of Northern Ireland. The only difficulty and challenge we have in progressing the Bill’s other provisions is the legislation that allows Northern Ireland to use secondary data for cancer registries. I am aware that the current Health Minister in Northern Ireland, who is my party colleague, has a one-clause Bill ready to move forward to rectify that.

I wanted to make that small contribution in support of the work done by the hon. Member for Edinburgh South West in bringing forward the Bill. It has been a pleasure to serve on this Committee.

--- Later in debate ---

[Ashley Dalton]

I can confirm that the overall objective of the whole cancer plan will be saving lives and reducing the number of lives lost to cancer, including rare cancers. The plan will be published later this year.

It is important to note that the Bill is specific to cancer; there will be opportunities to discuss other rare conditions in the future. I thank my hon. Friend the Member for Edinburgh South West for presenting the Bill, and I pay tribute to the charities that are backing him, some of which I had the pleasure to meet recently to discuss further how the Government can better support people with rare cancers. Together, we will improve outcomes for people across our country, and I look forward to working with everybody to get that done.

[Dr Arthur]

I am grateful for all the contributions to debate. The charity partners carefully picked the Committee members, given their interest in this subject, and we can see the benefit of that.

I thank the hon. Member for South Antrim for his efforts to make sure that the legislation works in Northern Ireland. I am also grateful for the comments from the hon. Member for Wokingham and my hon. Friend the Member for Calder Valley, who both asked for more progress in this area generally.

Of course, I have to mention my hon. Friend the Member for Mitcham and Morden. I attended the reception yesterday evening and, first and foremost, it was a fantastic celebration of her sister’s fantastic life. We should be grateful for her. I wish Paul Mulholland and his team all the best with that trial. It really did fill me with hope to hear that update from him.

My hon. Friend the Member for Mitcham and Morden mentioned marathons, so at this point I have to mention my daughter, Ruth Arthur, who ran the marathon in Edinburgh for the Brain Tumour Charity and raised just over £3,000 in the memory of her grandfather. I am very proud of her.

I am grateful for the shadow Minister’s comments and the insight and depth of thinking she brought to the debate. One of the best things about this journey has been working with the DHSC team who are working on the cancer strategy, and seeing how much they care about getting this right. We have often reflected on the point that the shadow Minister made about diagnosis. Too often when we go to events in this place hosted by charities that include somebody with life experience, late diagnosis is where their story starts. It is often avoidable. It is fantastic that the DHSC cancer team acknowledge that. Hopefully our GPs in particular will get more support to make sure that the early signs are not missed and the dots are joined together. It is good to see the Minister nodding vigorously as I say that. I thank her for her leadership right across this policy area and for her support for the Bill in particular.

I thank all Committee members for coming along today and contributing, and I thank the civil servants who helped to draft the Bill. If it passes—and I really hope it does—it will incentivise and create an environment in which more research into rare cancers is fostered, potentially helping us to save, in the longer term, perhaps thousands of lives. What an aspiration that is. I once again commend the Bill to the Committee.

Clause 1 accordingly ordered to stand part of the Bill.

Clauses 2 to 6 ordered to stand part of the Bill.

Bill to be reported, without amendment.