Rare Cancers Bill

Baroness Merron Excerpts

Friday 16th January 2026 Lords Chamber

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)]

My Lords, I am delighted to pledge the Government’s full support for this Bill. It is very much aligned with our commitments, it strengthens the research ecosystem and, most importantly—I agree with many comments today—it gives hope to patients and families affected by rare cancers. I am glad that the Bill has the support of the noble Lords, Lord Kamall and Lord Palmer, on behalf of their Benches.

I am most grateful to noble Lords for their points and proposals today. I will be reflecting on them after this debate with the Minister in this area, Ashley Dalton MP, and also Zubir Ahmed MP. I was very touched that so many Peers shared their personal experiences, whether their own or those of their loved ones. I feel that the Bill stands in tribute to the memory of so many, including the late Baronesses, Lady McDonagh and Lady Jowell. It also stands in tribute to the memory of so many who I believe have been brought into the Chamber today by the very touching words and reflections of so many noble Lords. I realise how difficult that is.

I congratulate my noble friend Lady Elliott on her tenacity and clarity in bringing forward this important Bill before the House. I associate myself with the thanks to the many campaigners and charities who have worked on this for so many years, and I know they will continue to do so. My noble friend Lady Morgan made that point particularly clearly. I say to the House, and particularly to the noble Lord, Lord Kamall, that the Government are quite clear that no patient should be left behind simply because their cancer is less common.

The national cancer plan is soon to be published— I heard what the noble Lord, Lord Polak, hopes will be in there, and he will not have to wait too long for it—and it will build on the progress of this Bill. They work very well together, because they both seek to improve outcomes for cancer patients across the country, including those with rare cancers. It is by fighting cancer on all fronts—prevention, diagnosis, treatment and research—that we will make that change.

Much has been said today, and rightly so, about a number of cancers, but I want to say a particular word on how little is currently known about the prevention, diagnosis and management of brain tumours. They remain one of the hardest cancers to treat, and we also know how crucial early diagnosis is for improving survival rates for all cancers, including brain tumours. That is why we have committed to an additional £6 billion capital investment on new diagnostic, elective and urgent care capacity. The noble Lord, Lord Patel, called for genome sequencing for brain tumours. I can say to him that the national cancer plan will include detail on how we ensure that patients have access to the latest treatments and technology, including genetic treatments.

Important points were raised by the noble Baroness, Lady Grey-Thompson, and the noble Lord, Lord O’Shaughnessy, among others, about how the £40 million commitment to NIHR funding for brain tumour research will be met. That commitment absolutely remains in place, but there is no upper limit to our funding of high-quality brain tumour research and we are committed to exceeding the £40 million target. I should also add that there is no limit to our funding of high-quality childhood cancer research.

Clinical research, rightly, is at the core of this Bill. It is one of the most powerful tools that we have. I believe that the Bill will complement the ambitions in our 10-year health plan and the forthcoming national cancer plan to embed that research across the NHS and give patients greater control. It will make it much easier for researchers to connect with patients with rare cancers and streamline the recruitment for clinical trials and will ensure our regulatory framework delivers for those who need it most.

The noble Lord, Lord O’Shaughnessy, and the noble Baronesses, Lady Finlay and Lady Browning, raised the database. The database is live across the UK; it is a UK-wide registry. I urge everyone to sign up to be part of research in order to connect with trials. The noble Baroness, Lady Browning, also asked about strengthening the orphan drug regulations. We must ensure that there is a detailed review before any decisions are made on the regulations.

I say to the noble Lord, Lord Polak, that we will ensure that we do all we can to improve how we use data for research and raise public awareness of consent. I certainly fully support the digitisation of advance consent, which he referred to.

It is key that we incentivise research and continue to support and develop cutting-edge research for rare cancers and other rare diseases through the NIHR. For example, in December, we launched a pioneering new brain tumour research consortium to accelerate research into new treatments through the NIHR, which is investing an initial £13.7 million, with significant further funding expected to be announced shortly. We are also ensuring the effective co-ordination of research from other funders and charities through the Office for Strategic Coordination of Health Research, which is chaired by the noble Lord, Lord Kakkar.

We published Transforming the UK clinical research system: August 2025 update outlining how we fully delivered against all the recommendations in the review conducted by the noble Lord, Lord O’Shaughnessy, who I thank for his work on commercial clinical trials. We will go still further to deliver on our 10-year health plan and cut clinical trial set-up times to under 150 days by March—a target driven by the Prime Minister. We are taking forward the most significant reform of clinical trials regulations in more than 20 years. We need a more efficient and adaptable regulatory framework, and that is what we will deliver.

Concerns were raised about timings of implementation and market authorisation of clinical trials. The timeframe in the Bill is a legal boundary, and we certainly expect to publish the report rather sooner. The noble Lord, Lord Mott, asked about the UK’s ranking for approving orphan drugs. The lessons learned from the review of the regulations will inform how we best approach the regulation of UK orphan medicines.

On the abolition of NHSE, work is under way on primary legislation. That will enable its functions, powers and responsibilities to transfer formally to the department. That will include responsibility for this Bill. I heard loud and clear from a number of noble Lords the wish to see a speciality lead for rare cancers in post and getting to work as soon as possible. I certainly agree on their importance. I heard what the noble Lord, Lord Blencathra, said, but this is the way we will go forward. We will ensure that that appointment is made as soon as possible.

As I said at the outset, many useful points have been made. They will be part of our consideration, but the main thing I want to say is how glad we are to fully support this Bill and how we will do all we can to help progress it. It reflects ambition and our support for the goal for the UK to be the global leader in clinical research, which noble Lords called for. This is about patients, particularly those facing rare cancers. They deserve and need greater choice, speed and opportunity to participate in vital studies. Every breakthrough is key because it means that we can maximise people’s access to the benefits. I thank my noble friend for bringing the Bill forward, all noble Lords who have contributed and all those who continue to champion its cause.

[Lord Winston (Lab)]

I apologise for keeping the House waiting a moment longer, but I want to ask the noble Baroness something very important. This has been a fantastic debate of a high standard, in the best interests of the House of Lords. There was a great focus on focused research on rare cancers, but does she agree that continued basic research on cell biology, embryology and a whole range of things about cell development, which has contributed so much to cancer research and to rare cancer research, is also important?

[Baroness Merron (Lab)]

As my noble friend said, this has been an extremely valuable, well-informed and moving debate. At present, we are focusing on rare cancers because of the nature of the Bill, but I absolutely take his point about the importance of work outside rare cancers and the overlap with that. I thank him for it.