Rare Cancers Bill

Uma Kumaran Excerpts

Friday 11th July 2025 Commons Chamber

[Gregory Stafford]

Once again, I congratulate the hon. Member for Edinburgh South West (Dr Arthur) on bringing this essential Bill before us and thank him for the hard work he has done to make sure we get to this place. As I have said many times in this House, early detection saves lives, but without meaningful progress in research we will fall behind other countries making major advances in cancer care.

We call these rare cancers, and they are rare in their individual components, but I have been amazed by how many constituents across Farnham, Bordon, Haslemere, Liphook and the surrounding villages have contacted me in support of the Bill and to share their experiences. Despite rare and less common cancers receiving more than half of UK cancer research funding in recent years, a staggering 82% of patients surveyed by Cancer52 said that they were never offered the chance to participate in a clinical trial. That is not because there is no public support or because the science is not there, but because persistent structural barriers are in the way. The Bill addresses those barriers directly.

If enacted, the Rare Cancers Bill will appoint a national specialty lead for rare cancers within Government, creating accountability, facilitating research and collaboration, and embedding co-ordination across NHS England—while it still exists—the National Institute for Health and Care Research and cancer alliances. Secondly, it will mandate a review of the UK’s orphan drug regulations, aligning incentives such as marketing exclusivity and reduced regulatory fees with international best practice. Thirdly, it will adapt the NIHR’s Be Part of Research platform to create a dedicated, proactive registry that directly links patients with relevant clinical trials.

Let us be clear: this Bill aims to deploy smarter systems, harness the power of artificial intelligence, expand fair access to treatment, end the postcode lottery and ensure that every patient, no matter the type of cancer, has the opportunity to benefit from research and high-quality personalised care. Let us also be clear about the need. Rare and less common cancers account for 47% of all UK cancer diagnoses, yet they are responsible for 55% of all cancer deaths. That means that more than half of those who die of cancer in this country do so from conditions that receive disproportionately less investment, less attention and less hope.

The disparity in survival is stark. For some rare cancers, five-year survival rates languish in the single digits. Only 16% of people diagnosed with cancers of the pancreas, brain, oesophagus, liver or stomach survive beyond five years. By contrast, the five-year survival rate across more common cancers is more than 55%. This is not a marginal issue; this is mainstream cancer care, but it is neglected.

Our international peers are taking action. In countries such as France, Germany and the USA, regulatory frameworks are actively incentivising clinical trials for rare cancers. The UK, meanwhile, has fallen from second to 10th in Europe for access to orphan medicines. We must reverse that decline. We must unlock the potential of our research base, and this Bill gives us the legislative structure to do so.

The NHS 10-year plan, launched with the ambition to modernise our health service, is a wide-ranging document. It rightly champions early diagnosis, innovation and personalised care, and there is no doubt that many of its pillars, particularly those on genomics, digital access and therapeutic innovation, can benefit people with rare cancers, but “can” is not the same as “will”, and “should” is not the same as “must”. The plan sets out a national goal to diagnose 75% of all cancers at stages 1 or 2 by 2028. That target explicitly includes rare and less common cancers. That is an important and necessary ambition but, as campaigners have rightly pointed out, without specific structural action on rare cancers, we will not hit that target; even worse, we will leave some of the most vulnerable patients behind.

As I have said, these are not fringe diseases: these are mainstream conditions that are under-researched and under-resourced. The 10-year plan includes a number of relevant commitments, such as the whole genome sequencing of newborns, supported by £650 million of investment, which could revolutionise early detection of genetic cancer syndromes. Of course, there are some safeguarding issues around that sequencing—I do not want to pre-empt my column in PoliticsHome on Monday, but please read it for more about my concerns over those safeguards.

Likewise, the plan includes the expansion of genomic and pharmacogenomic services in the NHS, giving us the potential to offer targeted therapies for rare cancers. It has a pipeline for advanced therapy medicinal products, including CAR T-cell treatments, which are already being rolled out for certain rare blood cancers. It also streamlines the regulatory pathways through a proposed innovator passport to bring treatments to patients faster.

Those are steps in the right direction, but let me be frank: the plan does not go far enough for people with rare cancers. There is no dedicated rare cancer taskforce, despite repeated calls from Cancer52, Sarcoma UK and the Brain Tumour Charity. There is no specific ringfenced funding for rare cancer services, despite the complex multidisciplinary care that these conditions require. There are no rare cancer-specific training pathways or fellowships, despite clear evidence from clinicians that a lack of expertise is hampering outcomes. The England rare diseases action plan, published alongside the NHS strategy, takes some welcome steps on collaborative networks and data integration, but rare cancers are again folded into a general framework, rather than given the targeted attention they so desperately need.

[Uma Kumaran (Stratford and Bow) (Lab)]

I am here today on behalf of my young constituent, Imogen, and all young people facing tongue cancer. It is a rare cancer, with frightening and disabling treatment options. I am also here on behalf of my constituent Ros, who lost her mother to pancreatic cancer just 24 hours after diagnosis. Does the hon. Member agree that this House should be united in its support for practical, targeted reforms to advance rare cancer research, which are supported by more than 30 expert charity partners and which so many of our constituents desperately want to see passed into law?

[Gregory Stafford]

I thank the hon. Member for her intervention. She is absolutely right—I hope this matter has cross-party support in the House. As she points out, a significant number of charities across the country hope that the Bill will pass today, as do I.

That brings me nicely on to what Jane Lyons, the former chief executive of Cancer52, has said:

“Rare and less common cancers make up a massive part of the cancer burden in this country. They need proper structural attention—not just well-meaning inclusion in generic plans.”

She is right. We need dedicated leadership and a single accountable individual or office for rare cancer research and care. We need smarter data platforms, such as the adapted Be Part of Research system proposed in the Bill, and we need a clear strategy for delivering orphan drug access, so that the UK becomes a destination for innovation, not a detour.

When the NHS 10-year plan speaks of transformation, we must ensure that that transformation is inclusive. When we talk about prevention, early detection and innovation, we must be honest about who gets access and who does not. If we are serious about improving outcomes for all cancer patients, rare cancers must not be treated as an afterthought. They must be recognised for what they are: a major public health challenge hiding in plain sight.

The 10-year plan gives us the tools, but it is now up to this House and to Ministers to ensure that those tools are used equitably, strategically and with urgency. That is why I was incredibly saddened to hear that Dr Susan Michaelis, the founder of the lobular moonshot project, died a couple of days ago. Susan’s life and legacy exemplify why this Bill matters. Lobular breast cancer affects 22 women every single day in the UK and more than 1,000 globally. It is not rare in the strict legal sense—more than six per 100,000 are diagnosed annually—but due to the severe lack of research, awareness and tailored treatment, it deserves to be treated as such by our systems.

Susan was due to meet the Secretary of State on 14 July—this coming Monday—to discuss how to accelerate the vital five-year research project she helped to initiate. Thankfully, that meeting will still go ahead. The campaign will not stop. The lobular moonshot project will continue—for Susan, and for every woman still facing this disease without the research-backed options that she deserved.

Susan is far from alone. A constituent recently wrote to me about their mother, who died in 2011, just three years after her diagnosis with glioblastoma multiforme, an aggressive and incurable brain tumour. The average glioblastoma survival time is 12 to 18 months; only 25% of patients survive more than a year, and just 5% live beyond five. Another campaigner spoke movingly about the delays she faced before being diagnosed with a rare kidney cancer—initially misdiagnosed, postponed by covid, and ultimately caught too late.

There are so many rare cancers, and the stories repeat. Rare cancers are not rare to those living with them; they are rare only to the system. According to Jane Lyons, the former CEO of Cancer52,

“Something like 47% of all cancer diagnoses are for rare and less common cancers, but they account for 55% of all cancer deaths…That’s a massive number of challenges—and a huge opportunity for impact.”

Sarcoma UK’s recent report found that one in three sarcoma patients waits more than six months to be diagnosed. Referral pathways are frequently misapplied, and this delay is not a minor inconvenience; in cancer care, it can be fatal.

The Brain Tumour Charity has called the Bill

“essential for any real hope of progress in finding a cure.”

The Less Survivable Cancers Taskforce has declared that this legislation is

“crucial for early diagnosis and equity of access.”

The Urostomy Association, in its rare cancers manifesto, calls for urgent structural change to improve data, screening and outcomes, and Lynch Syndrome UK has spoken powerfully about the opportunities to accelerate genetic-led, AI-informed cancer prevention if rare cancer research is properly funded.

I believe that the Rare Cancers Bill will help to achieve that. It has three core provisions: first, a named lead for rare cancer research so that this agenda has a home in Government and a voice at the top table; secondly, a review of the orphan drug regulations to create better commercial incentives for new treatments and trials; and thirdly, a patient-focused data system built into the Be Part of Research platform so that people are no longer left in the dark about trials that could change their lives. This is not just about saving lives; it is about improving them. It is about ensuring that families are not left with grief and regret when better systems might have given them hope.

Today, as we consider the Rare Cancers Bill, let us remember people like Susan Michaelis and the countless families who have campaigned for change they may not live to see. Let us recognise that rare cancers are not someone else’s problem, but a public health injustice hiding in plain sight. Let us pass the Bill—not just for the scientists and clinicians, but for every patient, and for every parent and partner who has watched a loved one suffer from a cancer few people can even pronounce. This is our chance to correct the imbalance, drive innovation and deliver real, lasting change. If we seize this moment, we can ensure that every patient—no matter how rare their cancer—can access trials, treatment and the possibility of life.

Let us not waste this opportunity. Let us be clear-eyed about the gaps and build an NHS that genuinely serves every patient, with every type of cancer, in every part of this country. Together, let us leave a legacy worthy of those we have lost, and transform care for those still fighting.