Rare Cancers Bill

Robin Swann Excerpts

Committee stage
Wednesday 2nd July 2025 Public Bill Committees

[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.

[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.