Rare Cancers Bill

Lord Kakkar Excerpts

Friday 16th January 2026 Lords Chamber

[Lord Kakkar (CB)]

My Lords, it is a great pleasure to follow the noble Baroness, Lady Browning. In so doing, I congratulate the noble Baroness, Lady Elliott of Whitburn Bay, on the very thoughtful way in which she has introduced this important Bill. I must remind noble Lords of my own registered interests as chairman of King’s Health Partners, chairman of UK Biobank and chairman the Office for Strategic Coordination of Health Research.

We have heard that rare and less common cancers represent a substantial burden of disease—some 47% of diagnoses and some 55% of deaths. This is striking, because the poor clinical outcome has been attributed to a lack of research, a lack of co-ordination in care and a lack of application of resources to ensure that clinical outcomes can be improved. The Bill before your Lordships today addresses all these matters by ensuring that there is greater accountability, that regulation is improved and, most importantly, that we can drive forward a meaningful research effort for a series of cancers that represent, by themselves, small numbers of patients but collectively represent, as I have said, a substantial burden.

It is very important, and indeed we have heard it this morning, that the appointment of a national specialty lead for rare cancers is achieved quickly. We have seen in other areas and domains of clinical practice the impressive results achieved through the appointment of such leadership. For instance, the appointment of a national specialty lead for cardiovascular disease some 20 years ago was attended by a substantial reduction in cardiovascular mortality. We have also seen the impact that such individuals can have on the research agenda.

Regulation is vital in incentivising innovation. Numerous reviews and assessments have determined that, in many areas, our regulation is wanting. In this area, the regulation has the potential for a substantially negative impact on innovation, and it is innovative therapies that are going to improve clinical outcomes, so review of regulation is critical. I share the view of my noble friend Lord Patel that the three-year window for delivery of the review of the regulatory framework appears far too long and should be addressed by His Majesty’s Government.

The final part of the Bill is to enhance and promote the research effort. This is critical. The mandate that the National Institute for Health Research, as part of its Be Part of Research initiative, establishes special opportunities for registers for rare cancers is critically important.

However, beyond that, as we heard from my noble friend Lord Patel, it is important that we go beyond just knowing where the patients are and providing patients with the opportunity to participate in clinical research. The register should go beyond and provide the opportunity for appropriate genotyping and phenotyping of rare cancers as a resource to drive future research effort.

In that regard, the sharing of data within the NHS for research purposes is critical. We saw the benefits of that during Covid, when the Secretary of State issued a COPI notice that allowed the sharing of primary care data with UK Biobank and allowed researchers therefore to use that important resource to identify many treatment options and a better understanding of Covid-19.

The sharing of data that will be facilitated as part of this Bill is probably one of the most important elements that will drive forward the opportunity for improving clinical outcomes for those suffering from rare cancers.