Rare Cancers Bill

Lord Patel Excerpts

Friday 16th January 2026 Lords Chamber

[Lord Patel (CB)]

I thank the sponsors of this Bill, Dr Scott Arthur and the noble Baroness, Lady Elliott of Whitburn Bay, for bringing it to this House. Noble Lords must excuse me if I am a bit emotional after listening to the stories, because I too have experienced grief recently due to rare cancer.

I support this Bill strongly, and I hope we will give it swift passage through this House, unamended, so that it can be on the statute book. However, I have one or two concerns. First, I understand the need for the review relating to marketing authorisation, because we need drugs to be developed urgently and we therefore require regulation to change to allow for this. I look forward to listening to the noble Lord, Lord O’Shaughnessy, about the novel ways in which clinical trials can be conducted to speed up this process. I have concerns about the timelines. The Bill gives hope to people with rare cancers, from diagnosis of terminal illness to, we hope, treatment. That is what we hope the Bill will do, but a timeline of three years to carry out a review, with no plan for implementation of that review, seems rather long. Timelines for processes and progress are measured in years, while timelines for tumours to advance are measured in weeks. Patients with rare cancers cannot wait long, so I hope we will address the issue of timelines.

That applies also to the reports that are to be produced every three years, as indicated in the Bill. The idea that there will be a lead clinician for specialist rare cancers, with a duty to guide, co-ordinate and promote research for those cancers, is a good one. As we have heard, funding for rare cancers is abysmally low—about 1/10th of total government funding for research related to cancer goes to rare cancers. That must change, because 50% of deaths related to cancer are the result of rare cancers. Unless we change that, we will not make a bit of difference.

Research is important, but the bedrock of research is the requirement that all these rare tumours are genetically sequenced, so that drugs that already exist can be repurposed to treat other diseases. I will give the House an example: BRAF V600E, the gene associated with certain forms of melanoma, was found to be important in effectively treating certain kinds of brain cancer, and in successfully treating people with rare breast cancers. Charities such as Salivary Gland Cancer UK, which has given me a good brief, and Brain Cancer Justice have pleaded for genomic sequencing of tumours. We must do this for each and every case, to build up a registry—not just of patients who have suffered from rare cancers but patients who are on the register with a tumour.

As Brain Cancer Justice has asked for, we should make sure that tumours are frozen at the point that they are obtained. Without frozen tissues, we will not be able to carry out molecular studies in the future to determine whether there are genes that are affected, and therefore drugs that could be developed related to those genes. It is important that we create a registry, not just a database of patients. I hope this Bill gives much hope to patients, and I hope it will get on to the statute book.