Rare Cancers Bill

Ashley Dalton Excerpts

Committee stage
Wednesday 2nd July 2025 Public Bill Committees

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

It is a pleasure to serve under your chairmanship, Mr Stuart. I congratulate the hon. Member for Edinburgh South West on bringing forward this very important piece of legislation. I declare an interest as a consultant paediatrician who has looked after a number of children with rare conditions such as teratoma, rhabdomyosarcoma, Wilms’ tumour and retinoblastoma, to name but a few.

One of the issues with rare cancers, which transposes to rare diseases in general, is that they are often diagnosed late, because people do not recognise that they have symptoms of a rare disease and their health professionals are not as familiar with them because they are rare. The presentation and diagnosis are then late and, as such, the treatment is more difficult. That is compounded further because there has been less research on those topics, so it is not clear what the best treatment for those conditions is. On top of that, the patient may have to travel very long distances to see a specialist who is familiar with the condition, adding both logistical difficulty and cost to that patient’s care.

Some steps are in place to try to improve the situation. The orphan drug regime gives market exclusivity for 10 years, and it provides for lower and refunded fees from the Medicines and Healthcare products Regulatory Agency for the services it provides. Nevertheless, it can still be non-commercially advantageous to put money into developing a drug that is going to be used on no more than a handful of people, however beneficial it is for the individuals concerned.

I welcome the Bill, but wish to make a couple of points. First, in principle it is best that trials are first broached with the patient by a member of their healthcare team. Of course, a member of any given healthcare team—I speak as one myself—will never be aware of all the trials available to all patients at any one time. I welcome the Lord O’Shaughnessy review—commissioned by the last Government and accepted by the current one—which talks about getting a consensus on how best patients can be informed of trials. I wonder whether we should have a system in which patients opt out of not the trial itself but being asked about trials. At the outset, they could be asked, “Would you like to receive information on trials—yes or no?”, so that more people can be aware of how they can contribute. When people are diagnosed with something rare, they often want to contribute to helping others who will come after them.

Will the Minister tell us more about the national cancer plan, which was consulted on earlier this year? I welcome the fact that the children and young people cancer taskforce, which was paused, is being reinstituted. Also, how will the Bill apply to repurposed drugs? Sometimes new medicines are developed for a particular condition, but we often find that medicines can be reformulated and used in a different way to provide a different form of treatment to help individuals with a different condition. How will that apply in respect of both the measures in the Bill and the O’Shaughnessy review?

As a paediatrician, I am very pleased that the Bill applies to children. Overall, I think the Bill is great. It offers hope for many in the future. Will the Minister say something about other rare conditions? As well as rare cancers, people get other rare conditions, and they are affected by the same challenges with research and treatment, and by delays in diagnosis and travel.

Overall, doctors are able to save people’s lives, and improve people’s lives, one at a time, but Parliament and research offer the opportunity to do that on a much bigger scale. I am very grateful to the hon. Member for Edinburgh South West for what he is doing today.

[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

It is a pleasure to serve under your chairmanship, Mr Stuart. I congratulate my hon. Friend the Member for Edinburgh South West on his Bill reaching Committee stage. That is a huge achievement for any colleague, but especially for one who has served in this place for almost exactly a year to the day. The Government welcome contributions from Back Benchers, we welcome effective scrutiny from Committees, and we value the vital role that Parliament plays in holding us to account.

In April, my right hon. Friend the Prime Minister announced that clinical trials would be fast-tracked to accelerate the development of the medicines and therapies of the future. Through this new drive, patients will have improved access to new treatments and technologies. We see the Bill as contributing to that ambition. We want to go further for patients with rare cancers, and this legislation will act to incentivise recruitment, oversight and accessibility of rare cancer research, so that NHS patients are at the front of the queue for cutting-edge treatments.

Clause 1 will ensure our regulatory competitiveness. It places a duty on the Government to publish a review of the legislation around orphan drugs within three years of the Bill becoming an Act. The review will examine our legal framework and compare our approach to that of our international partners. We want the UK to lead the world in this space, as the prime destination for clinical research.

Clause 2 will raise the profile of research for rare cancers by placing a new duty on the Secretary of State for Health and Social Care to facilitate and otherwise promote research in this area. The Government want to give patients greater choice and control over their healthcare, and rare cancer patients should have access to research if they choose.

The clause also ensures that the Government will develop a bespoke registry service for rare cancers, to be delivered through the “Be Part of Research” programme—our groundbreaking research registry service provided by the National Institute for Health and Care Research—and that we will appoint a national specialty lead for rare cancers, which we will designate within the NIHR research delivery network, who will have oversight of the overall rare cancer studies portfolio in England.

The Government are committed to going further for rare cancer patients, and that means making clinical trials more accessible. Clause 3 will introduce an innovative solution to allow rare cancer patients to be contacted as quickly as possible about clinical research. The clause creates a new power to allow patient data to be shared from NHS England information systems.

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

Does the Minister agree that keeping a list of people with rare cancers is only any use as long as there are some drug trials? Last night we launched a first trial, in my sister’s memory, for glioblastoma, with every penny raised by people donating, holding bake sales and running marathons. Is that any way to tackle rare cancer?

[Ashley Dalton]

I congratulate my hon. Friend on the launch of the trial in her sister’s name. We do want to see more research and trials coming forward, particularly for rare cancers. She will be aware of the consortium that the Department has developed to work directly with the brain tumour community in particular, to improve the quality and number of research trials that come forward for funding.

[Josh Fenton-Glynn (Calder Valley) (Lab)]

Constituencies in Yorkshire, such as the one I represent, do particularly poorly with research funding—I think 5% of research funding for cancer trials goes to the area. With this Bill and a renewed focus on cancer, I hope we will look to expand the number of research-active hospitals to give people throughout the country a better chance.

[Ashley Dalton]

I should clarify that there is no regional specificity in the allocation of research funding. We welcome all funding bids for research on cancer and rare cancers from anywhere in the country, and I encourage them to come forward.

The new power in clause 3 to allow patient data from NHS England information systems to be shared will allow more patients to be contacted about existing trials. Practically, it will allow us to join up data from the national disease registration service with “Be Part of Research”. As I have said, we are encouraging people to bring forward more research proposals, all of which are considered.

For the first time, patients with a rare cancer could be automatically contacted about research opportunities that are relevant to them and offered innovative new treatments, which means rare cancer patients could have access to research at their fingertips. That is the kind of change that the Government support as part of the shift we are making from analogue to digital—one of the three shifts that will be covered in the 10-year plan that will be launched tomorrow, when more details will become clear.

Clause 4 covers the Bill’s territorial extent. Due to practical and legal differences between the nations, the devolved Governments did not wish to legislate in their individual countries. Our manifesto promised to reset our relationship with the devolved Governments, and we have developed the Bill with them. I am delighted that they expressed their support on Second Reading. Clauses 5 and 6 cover the Bill’s commencement and title. The Government are fully committed to supporting the Bill through the next stages so it can become the Rare Cancers Act 2025.

The shadow Minister talked about the national cancer plan, which I can confirm is being worked on. We have had over 11,000 representations on that plan, which will be published later this year, following the publication of the national 10-year plan for health tomorrow. The children and young people cancer taskforce was launched earlier this year and continues to meet, and has now ensured that young people and children’s voices are part of the taskforce.

[Clive Jones (Wokingham) (LD)]

When the national cancer strategy is published, I hope that part of it will focus on boosting the survival rates for rare cancers. Will the Minister confirm that that will be an important part of the strategy?

[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.