Rare Cancers Bill

Baroness Finlay of Llandaff Excerpts

Friday 16th January 2026 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, I am sure that, not only in this House but across the country, people are grateful to Scott Arthur MP and the noble Baroness, Lady Elliott of Whitburn Bay, for introducing this incredibly important Bill.

I declare that my working life has been in palliative care. I have looked after many children and adults with rare cancers, including some very close to me and some in my family. They often seem to have missed out on the research agendas at an early stage, yet they all are incredibly generous, saying that they know a study may not help them but it will help others.

In the 1970s I worked in a paediatric oncology unit as the early MRC trials were conducted for children with leukaemia. The prognosis was appalling but, because of the huge trials, the outcome is completely different today. This week I met a young man, Lewis, who described the intensive chemotherapy he endured— which is very novel and complex—as brutal, but he knew that without the research of previous years, he would not be alive and well today.

Ocular melanoma illustrates why the Bill is so urgently needed. These patients are very often young, and the primary treatment is to try to cure the malignancy, but that is not always successful. Once liver metastases occur, the standard NHS treatments available have remarkably poor outcomes and have an effect only in a small genetic subgroup, extending life expectancy by under six months. Some 60% of patients with metastatic uveal melanoma have no approved treatments available to them that are specific to their disease. They rely on other drugs developed for skin cancer, a completely different disease, which have limited if any benefit.

For 25 years, novel management of the cancer through percutaneous hepatic perfusion with melphalan chemotherapy, commonly known as chemosaturation, has been researched. It delivers high doses to the liver through a tiny catheter fed up through the groin, while filtering blood to protect the rest of the body. The liver deposits shrink, some dramatically, with an overall 84% clinical benefit rate with improved quality-of-life markers. Two UK centres, Southampton and Manchester, undertake this and are researching it. Survival improvement is, on average, over 20 months, which means that it is funded in the USA, Germany and several other European countries—but it is not funded here. Patients have to crowdfund to have this treatment that extends their lives significantly.

This is a very rare cancer. Generating the level of evidence required to submit to NICE has been difficult, and funding is not available. Research is essential. The national lead on rare cancers must be able to link across the UK for every person to have the opportunity to participate in research and benefit from advancements that develop through fast-track programmes. The national lead will need to address time-limited interim access pathways to clinically appropriate treatments for rare cancers—while longer-term commissioning decisions are under consideration—where published clinical evidence and specialist expertise already exist. Time is not on the patient’s side.

When will the clinical lead be appointed? Is the database already live across the whole of the UK? Will the lead be able to review individual funding requests for exceptionality where no alternative exists, so that patients with rare cancers are not left without access to life-extending treatments and, importantly, so that they and those who love them are not left without hope?