Rare Cancers Bill

Baroness Morgan of Drefelin Excerpts

Friday 16th January 2026 Lords Chamber

[Baroness Morgan of Drefelin (Lab)]

My Lords, I am absolutely delighted to take part in this Second Reading debate. Although we are only a third of the way through the speakers’ list, this has already been a very moving—as well as extremely well-informed, interesting and expert—debate. Perhaps it shows the House of Lords at its best. I congratulate my noble friend on bringing forward this Private Member’s Bill and on speaking so eloquently and personally about why she is doing this.

As we have already heard, rare cancers often have lower survival rates. When we look at the number of people being diagnosed with rare cancers, “rare” gives the wrong impression, because around 52% to 55% of all cancer deaths can be attributed to rare cancers. Acute myeloid leukaemia—AML—has a five-year survival rate of just 22%. Almost 80% of those who are diagnosed with AML today will not be alive in five years’ time—that is such a tough diagnosis—and only half will survive beyond six months.

I want to pay tribute in my short remarks to the work the charities do across the sector—charities that often have no staff and are peopled by those with direct experience of loss, of the cancer type itself and of dealing with real challenges in access to treatments. Those charities often come together in the organisation, Cancer52, which I am president of. They have long been calling for more investment in research into rare and less common cancers. They do this, as we have heard already, because research is absolutely key for transforming survival rates.

These cancers are diverse, complex and affect a large patient population, but, as we have already heard it so eloquently explained by the noble Lord, Lord Patel, research is difficult in rare cancers. Populations of uniquely sequenced types of cancer are very small, so it is extremely difficult. Ideas such as those that the noble Lord presented around sequencing and repurposing all progress through greater attention and more funding for research, which the Bill aims to deliver, and will further incentivise research and investment in treatment of rare cancer types.

I am particularly interested in the provision in the Bill to appoint a national lead for rare cancers to ensure that patients are offered participation, for example, in relevant clinical trials, for far too often patients diagnosed with a rare cancer are not offered the opportunity to take part in trials. Cancer52 recently did a survey of 1,400 patients and found that 82% were not offered the opportunity to participate in a clinical trial. A Leukaemia UK research survey echoed this sentiment, finding that half of all leukaemia patients were not given the opportunity to participate in a trial.

I support the measures in the Bill. I support the need to create a focus on rare cancers, on orphan medicines and so on. I look forward to hearing from the Minister an update for the House on the work being done by the Government, through the development of plans such as the cancer plan, to tackle the real challenges of access for patients with rare cancers.