Rare Cancers Bill

Baroness Coffey Excerpts

Friday 16th January 2026 Lords Chamber

[Baroness Coffey (Con)]

My Lords, it would be rare for any noble Lord in this House not toknow someone affected by cancer. In the UK, nearly 500 people die from cancer every day. Those figures are not abstract, they represent personal lives: families, friendships and futures cut short. I commend the noble Baroness, Lady Elliott of Whitburn Bay, for picking up the Bill and for so clearly setting out its impact. I know Dame Siobhain, but I did not know the late Baroness McDonagh, who was clearly beloved by many. The impact of the Bill will go a long way.

I speak as vice-chair of the APPG for Cancer, but also for a personal reason. The Bill is about giving hope to people such as my friend Dawn, my longest-standing friend from school. Just a couple of years ago, Dawn was diagnosed with a blood cancer with absolutely no prospect of a cure and a likely average lifetime of five years: it could be shorter or longer. Dawn introduced me to my favourite band, Muse, and we have attended concerts together for many years. The thought that there may be no more of that by the end of this Parliament is almost unbearable. This is what cancer takes: not just life, but shared moments and plans for the future.

It is increasingly common, and deeply troubling, that people are diagnosed either without clarity about the type of cancer they have, or without a clear understanding of treatment options because their cancer is so rare. As the noble Baroness set out, rare cancers may be individually uncommon, but collectively they are anything but rare, and around one in four diagnoses is for a rare or less common cancer. The consequence for tens of thousands of adults and children each year is that their experience of cancer is then markedly worse than that of patients with more common forms.

The outcomes of patients with rare cancer are consistently poorer. Diagnosis, if it can be done at all, takes longer; specialist expertise is harder to access; clinical trials are more difficult to find; and treatment options are limited. This is not because the science is beyond us—I hope—but because our system has not been designed with rare cancers in mind. The Bill seeks to address that gap.

I commend Dr Arthur MP for using his place in the Private Members’ ballot to stick to his guns and get a Bill addressing this issue. I must admit that, when I first saw the Bill, having been Secretary of State, I was a bit surprised that he felt that specific legislation was needed on identifying this research. But, having spoken to him about the Bill, I understand why he has done this. He was right to press Ministers and the department for change, and he explained to me some of the personal impact that this issue had had on him.

The Bill recognises a simple truth: pharmaceutical investment naturally gravitates towards issues affecting larger numbers of people and, without targeted intervention, rare cancers have fallen through the cracks. The Bill provides that intervention in a proportionate way, working within existing institutional frameworks.

The Bill tackles a major barrier to progress. It is good to see my noble friend Lord O’Shaughnessy here, who did a brilliant review on clinical trials—so I will avoid talking about that. However, it is important to recognise the history of things such as the Covid vaccine, when so many people coming forward to offer to be in trials was one of the reasons why it was able to be developed and allowed to be deployed as quickly as it was.

The Bill should also improve co-ordination. Rare cancers demand specialist knowledge, yet expertise is fragmented. Therefore, the creation of a national specialty lead for rare cancers will provide strategic oversight, promote best practice and, I hope, bring together research, data and clinical insight that are currently too often siloed. It would be great to understand whether the Government have yet identified who that special lead might be.

On the issues of regulating marketing authorisations, we need to make sure that the regulation is agile enough to support small patient populations, innovative trials and precision medicine. I have no concerns that safety standards will be weakened.

Delayed diagnoses, ineffective treatments and fragmented care are not cost-effective. We need to get to a point where it is not just economically sensible but absolutely vital to pursue this, to give hope to people.

I flagged in advance to the Minister that I wanted to ask a couple of questions. One is technical; it is simply to ask about the references to the NHS in this Bill. I am hoping she can assure me that the coming Bill to abolish NHS England will explicitly address this. The other is linked to Dame Siobhain McDonagh’s ongoing concerns about the NIHR and trials. Funding was provided, but not enough of that has been spent and not enough has been done. Can the Minister set out a plan for the work?

This Bill can and must give a new focus and impetus to exploring cures for rare cancer patients, that is why I commend it to the House.