Rare Cancers Bill

Lord St John of Bletso Excerpts

Friday 16th January 2026 Lords Chamber

[Lord St John of Bletso (CB)]

My Lords, I join noble Lords in thanking the noble Baroness, Lady Elliott of Whitburn Bay, for introducing this very worthwhile Bill, which has cross-party support. I declare a personal interest as I was diagnosed with early-stage lung cancer last year. The noble Lord, Lord Blencathra, may be interested to know that I was treated with the da Vinci robot; it was highly successful.

As noble Lords have mentioned, the statistics are alarming. Rare cancers account for up to 47% of all diagnoses and, sadly, 55% of all deaths. We often speak of the battle against cancer in monolithic terms, as if it were a single enemy to be defeated, but the reality is that it is a war fought on a thousand different fronts.

As we are all aware, pharmaceutical companies are profit-driven enterprises. When a cancer affects only a small number of patients, the potential revenue cannot justify the enormous cost of drug development. Sadly, this means that patients with rare cancers are often left behind—not because treatments are impossible but because they are not profitable.

The less survivable cancers include many rare cancers—the noble Lord, Lord O’Shaughnessy, aptly described the challenges of brain cancer—but also include pancreatic cancer and liver cancer. Those receive only 19% of research funding. When markets fail, it is the responsibility and duty of government to step in.

I was interested to see that the US’s Orphan Drug Act of 1983 was highly effective at dramatically increasing orphan drug approvals in America, but I am concerned that, although the UK ranked second in orphan drug availability way back in 2013, last year it ranked 11th. I welcome the fact that this Bill will provide accountability through a named responsible lead, as well as a review of orphan drug regulations to identify improvements; that review will be an opportunity to ask what we can do better.

This Bill will also improve our research infrastructure by ensuring that patient data from across the UK is shared and accessible for clinical trials. For diseases this rare, every patient counts. Connecting researchers with eligible patients is a fundamental barrier that this Bill will help dismantle.

It is encouraging that the Bill has the support of so many notable charities in the cancer space. In essence, it calls for a review rather than a prescriptive change. As my noble friend Lord Patel mentioned, we are seeing huge advances in genomics, creating more targeted treatments for rare conditions.

In conclusion, this Bill is not a panacea but a starting point. It does not in itself solve the complex, contentious issue of NICE appraisals or the affordability of these high-cost medicines; it creates the conditions for new treatments to be developed and provides the framework for that intervention. It is a modest, sensible and pragmatic proposal, and I wish it speedy progress.