Rare Cancers Bill

Lord Kamall Excerpts

Friday 16th January 2026 Lords Chamber

[Lord Kamall (Con)]

My Lords, I begin by thanking the noble Baroness, Lady Elliott of Whitburn Bay, for introducing this Bill in such a clear and moving manner. I thank all noble Lords who have spoken in this debate and echo the sentiments that they expressed. It is pretty clear that many of your Lordships from all Benches, if not all who spoke, welcome this Bill—as did Members in the other place.

I also thank Dr Scott Arthur, who introduced the Bill in the other place. If noble Lords have not already done so, I strongly encourage them to read Hansard on the Second Reading debate in the other place from 14 March last year. Just like the debate today, it contained many powerful and personal contributions sharing the devastating impact on patients and their loved ones. I particularly thank those noble Lords who have shared their own experiences, however difficult and emotional it may have been. I could sense a few tears being shed around the House.

I also have a personal story. I lost my mother-in-law and, despite growing up in an era of Les Dawson jokes about mothers-in-law, I loved her very dearly. Sadly, she died from a cancerous brain tumour a few years ago.

The noble Baroness, Lady Elliott, has clearly and persuasively set out the purpose and content of the Bill, but it is important to look at its three important tasks. The first is to place a legal duty on the Secretary of State for Health and Social Care to promote research into rare cancers, driven by a national cancer specialty lead for rare cancers. As was mentioned by two of the experts in this House, the noble Lords, Lord Kakkar and Lord Patel, and by my noble friend Lord Randall, a role—a specialist lead—to drive this forward is really important. An example was given of the effectiveness of specialist leads in other areas.

The second task concerns the importance of improving access to clinical trials, particularly through the use and better sharing of data. From some of the stories that we have heard today, people cannot believe that we are still not sharing some of that data, which should be available.

The third task is the requirement for the Government to conduct a UK-wide review of the regulatory framework for orphan medicine and products used to diagnose, prevent or treat cancers.

These three objectives are sensible and laudable, but how do we deliver them? How do we move from aspiration to implementation? As the excellent briefing from the Library makes clear, we are dealing with a stark reality because rare cancers, despite the name, account for almost half of all cancer diagnoses in the UK each year. My noble friend Lord Blencathra made the point that there are over 200 rare cancers and he referred to how many people they affect, yet they are often harder to diagnose and treat than the most common cancers. There are many reasons for this, a few of which were explained today.

Patient populations are smaller and more dispersed, which makes recruiting sufficient numbers for clinical trials very difficult. That point was made by my noble friend Lord Moylan and the noble Lord, Lord Mendelsohn, and it was addressed in the review by my noble friend Lord O’Shaughnessy. Another reason is that there are fewer commercial incentives to develop new treatments compared to medicines that may be used more widely.

I apologise for not declaring my interests at the beginning: I am a professor of politics and international relations at St Mary’s University in Twickenham, and I am helping to open a new medical school there. I am also teaching a module to MBA students on healthcare policy and strategy. I also have an academic link to the University of Buckingham, although not to the medical school there, but I just want to make sure that I have covered all bases.

As an academic, I was looking at some of the papers around this. A 2024 paper by Danielson, Prime and Larter found that the cancers that are most common in teenagers and young adults are different from the cancers that are common in children and older adults. Their survival rates for the same cancers can differ. This shows how incredibly difficult it is to tackle this issue. Crucially, the Teenage Cancer Trust reports that cancer treatments can be less effective for young people, as there is less research and fewer clinical trials for this age group.

The range of rare cancers—my noble friend Lord Blencathra said that there are more than 200—is vast. There are blood cancers, cancers of the female reproductive organs, head and neck cancers, pancreatic cancers, brain cancers and many more besides. That shows what a complex and challenging problem this is, but it should not be an excuse for inaction. As all noble Lords have said, the call for action is now.

By introducing this Bill, the noble Baroness, Lady Elliott, is shining a light on an issue that too often receives insufficient attention. She is proposing a measured, thoughtful and practical set of steps to make medical progress. Quite often, at the Dispatch Box, whether in government or opposition, we hear about government aspirations rather than firm steps, but this is a very practical proposal to the Government.

In discussing progress, we should acknowledge the extraordinary work of all those campaigners and charities who play their role in different ways, with some funding research, some advocating, and some supporting families and loved ones, as the noble Baroness, Lady Morgan, acknowledged. I thank them for their engagement with the Bill but, more importantly, for their tireless efforts on behalf of those living with cancers.

Although we are supportive of the Bill, it would be helpful to understand the view both of the Government and of the noble Baroness, Lady Elliott, on a few issues. The first issue, raised by a number of noble Lords, is funding. Although the Bill places an important duty on the Secretary of State to promote research into rare cancers, it does not seek to ring-fence or guarantee specific funding. Could the Minister say a little about how the Government envisage this duty being reflected in future funding decisions, and how we ensure that rare cancers do not continue to lose out when resource is allocated? I should declare that we understand the challenge of trying to fund all this research. Of course, it would also be interesting to learn of the view of the noble Baroness, Lady Elliott.

Secondly, on clinical trials, one of the challenges that patients and clinicians frequently raise is simple. As my noble friend Lady Browning said, not all clinicians are aware of all relevant trials, particularly where those trials are highly specialised or geographically distant. Could the Minister share the current thinking of the department on what steps could be taken to improve awareness and signpost rare cancer trials, especially for clinicians and patients in rural or remote areas? Related to that, even where new treatments or trials are available, access is often concentrated in a small number of specialist centres. Could the Minister comment on the thinking in the department on ways to address these disparities in access, so that patients are not disadvantaged simply because of where they live?

Turning to the proposed review of the regulatory framework, could the timeframe be cut to less than three years, and what are the implications of doing that? Looking at the issue of medicinal products, on the three-year timeframe, do the Government or even the noble Baroness, Lady Elliott, have any views on whether the period of three years could be shortened, given the urgency that many noble Lord have raised? Also, would the proposed review include consideration of NICE’s pricing and appraising processes, and will it consider wider societal impact, as we debated last week? Many stakeholders have highlighted the difficulty of balancing affordability with price points while supporting innovation in rare cancers. It would be really helpful to understand those points.

Finally, although the Bill rightly focuses on rare cancers, many of the issues it seeks to address, such as delayed diagnosis, limited research, small patient populations and a need for specialist care, also affect people living with other rare conditions. Could the Minister say a little about how the Government are thinking more broadly about rare diseases, and whether the lessons learned from this Bill might inform wider policy in this area? We also heard about a few other issues thrown in by noble Lords. One is timelines; another is the abolition of NHS England. I know this point was raised in the other place. What is the Government’s thinking on that issue?

The Bill is thoughtful and important, commands broad support across the House, and addresses an area of clear and long-standing need, but it does so in a careful and proportionate way. It reflects the voices and experiences of patients and families who too often feel overlooked, particularly those affected by rarer and less well understood cancers, which we should remember, despite the name, account for 47% of all cancers. This alone is an important and welcome development, and I commend the Bill’s sponsors for that. The questions I pose are not intended to delay; they are intended to be constructive, to understand how the Bill would operate in practice, how ambitions could be turned into reality, and how principles might inform and provoke wider thinking across government. I hope that my questions will be seen as constructive. Once again, I thank the noble Baroness, Lady Elliott, for her leadership on this Bill, and I look forward to working with her and supporting its progress through the remaining stages.