Rare Cancers Bill

Caroline Johnson Excerpts

Committee stage
Wednesday 2nd July 2025 Public Bill Committees

[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.

[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.