Rare Cancers Bill

Lord Mott Excerpts

Friday 16th January 2026 Lords Chamber

[Lord Mott (Con)]

My Lords, I begin by thanking the honourable Member for Edinburgh South West for first introducing the Bill in the House of Commons, and the noble Baroness, Lady Elliott of Whitburn Bay, for bringing it to the House today.

Although I have campaigned extensively on prostate cancer, which is the most common cancer in England, it is important that all cancer patients get the treatment they need. Taken as a whole, rare and less common cancers account for nearly half of all cancer diagnoses in the UK today, as we have heard from a number of noble Lords already. Today I will focus on two key areas: regulation and research.

The MHRA is a highly respected regulator, with patient safety rightly at its core. However, rare cancers pose unique regulatory challenges that cannot always be addressed using the evidentiary standards designed for common conditions. Patient populations are small and often geographically dispersed. Randomised control trials may be impractical, and real-world evidence and international data become even more important. The review of marketing authorisations for orphan drugs is therefore welcome, and it is important that we examine how much flexibility exists within the system to support innovation, including greater use of adaptive licensing, conditional approvals or rolling evidence models, better aligning with other jurisdictions so that data from international trials can be used here, and ensuring a clear pathway for early dialogue between researchers, clinicians, regulators and patient groups so that trials are rigorous and feasible, so that, ultimately, life-saving and extending treatments can be approved as quickly as possible.

There are also challenges around research design. Traditional models of cancer research have delivered huge progress, but they are not always well suited to rare cancers, as we have heard today. By definition, rare cancers have smaller patient cohorts, meaning limited recruitment opportunities. Data may be less robust due to the smaller sample size, and the commercial market for treatments may be less attractive to investors. The Bill’s emphasis on facilitating research and improving patient identification for trials is therefore critical, but this must go hand in hand with regulatory improvement to see safe treatments quickly brought to market.

I will briefly highlight two examples. The first, which has already been mentioned, is glioblastoma, a rare and aggressive brain tumour. Survival rates have not improved in more than 50 years, and treatment options remain limited. Yet the nature of it means that research is complex, trials are difficult to design, and patient numbers are necessarily small, making innovation, improved trial access and regulatory flexibility essential if outcomes are ever to improve.

I briefly return to prostate cancer. Within it are rare and aggressive subtypes that behave very differently from early-stage prostate cancer. Rare subtypes of common cancers such as this can face challenges strikingly similar to those experienced by patients with rarer diagnoses. This is not about competing for resources but highlighting the complexity of these issues.

I support the Bill as one with potential to make a real difference for patients whose diseases have too often been overlooked. We need a research environment that can gather robust data, reach the right patients and be supported to develop new treatment and a regulatory framework that reflects the unique challenges that come with rare diseases to get safe and effective treatments approved as quickly as possible. If we get this right, we can not only improve outcomes for people with rare cancers today but reshape how we think about evidence, regulation and fairness in healthcare for years to come.