Rare Cancers Bill

Uma Kumaran Excerpts

Report stage
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.

World Stroke Day

Uma Kumaran Excerpts

Tuesday 29th October 2024 Commons Chamber

[Sarah Dyke]

I wholeheartedly agree, and that is exactly the point that I was making.

Research from the Stroke Association shows that the NHS faces £1,300 of additional pressure for each person like Garry who does not receive life-after-stroke care, due to avoidable secondary strokes and other health complications. It is an injustice for stroke survivors who are suffering longer than they need to, for the taxpayer who could be paying less, and for the friends and families who often have no choice but to become unpaid carers to support stroke survivors, as my mum did for my dad after he suffered a stroke.

Unpaid carers currently bear 62% of the cost of prevalent strokes, with the NHS and social care bearing only a distant 9% and 22% respectively. Unpaid carers do a remarkable, important and often invisible job, and the Government must ensure they have access to the support that they need, including paid carer’s leave and a statutory guarantee of regular respite breaks.

There are not many easy answers when it comes to stroke. Constituents across Glastonbury and Somerton have written to me almost every month since my re-election because they are concerned about the closure of Yeovil district hospital hyper-acute services. It is right that steps are being taken to address the fact that 60% of people who arrive at hospitals do not get into a stroke unit quickly enough, so services are being reconfigured to provide patients with cutting-edge care in Dorchester or Taunton.

By concentrating hyper-acute services, wards can process patients more quickly, which is so important when caring for patients suffering from a stroke. After critical care has been provided, patients will be moved back to services closer to their home, such as Yeovil, so that family and friends will be able to visit their loved ones there rather than in critical care further away. I can understand why people are scared of potentially having to travel further in an emergency when response times are so poor. In fact, with an average response time of 42 minutes and 50 seconds, people in Somerset wait longer for an ambulance than anywhere else in England. For every minute a stroke is left untreated, nearly 2 million brain cells die, so fast ambulance response times are necessary for getting stroke patients lifesaving, disability-reducing treatments in time.

This is especially important for those living in rural locations, such as Glastonbury and Somerton, who may need to travel further for treatment. Liberal Democrat analysis has revealed that waits for life-threatening calls are 45% longer in rural areas than in urban ones. The average handover time for a category 2 ambulance call in Somerset has risen to over an hour, despite the ongoing 18-minute target, which results in ambulance crew being able to see only two or three patients per shift. The Government could lower these ambulance response times by increasing the number of staffed hospital beds, and ensuring our social care system is resourced well enough to allow people to recover outside hospital. We know that a matter of minutes can make all the difference in emergencies, so it is heartbreaking that ambulance delays are worsening and stroke victims are being left for hours for help to arrive.

I am inspired by the stroke quality improvement for rehabilitation project, which has helped over half the stroke survivors who were previously being failed by services in Somerset. The pilot has ensured that survivors have access to personalised and face-to-face support to help them with behavioural changes and re-entering work. Despite its success in preventing secondary strokes, and thus saving the health and social care system a great deal of money, the pilot is unlikely to receive funding from April next year, and 250 patients in Somerset face the prospect of losing access to good-quality life-after-stroke support.

I am particularly worried about stroke survivors in Glastonbury and Somerton, and elsewhere in Somerset, who will instead have to rely on Yeovil district hospital if this happens, as Yeovil district hospital provides only the minimum level of occupational therapy, physiotherapy, and speech and language therapy a week to less than half as many patients as the national average. There is a future where we no longer need to have a World Stroke Day, and that is what I am looking for—a future without a World Stroke Day.

Innovations such as the use of artificial intelligence in diagnosis could revolutionise recovery prospects for stroke patients, and preventive programmes could limit the impact stroke has on working-age people. We saw stroke mortality halved in just 10 years when stroke was prioritised in 2000, so progress can be made. If we are to reach that future, though, we must start by ringfencing budgets to enable the NHS to adopt innovative digital tools, invest in new technologies and develop a digital strategy.

This Government have already begun to make some progress with the Darzi report, which showed that the NHS is on its knees after years of mismanagement by the Conservatives, but we must ensure that stroke remains a top priority in their health mission.

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

I would just like to share my experience. On my first day here in the Commons, my husband suffered a stroke. This is a timely debate, so I thank the hon. Member for securing it. I am pleased to say that my husband is doing much better now, and he is here in the Gallery of the Chamber, as are those from the Stroke Association, who have been absolutely invaluable to our family and many stroke survivors across the country.

I would like to pick up a point that the hon. Member made about stroke. One in four strokes happens to people of working age, and one in three in this group will have to give up their jobs. It is very clear that, although the NHS has given excellent care to my husband and to families such as mine, there is much more to be done. The Darzi report revealed the scale of the challenges that our health service faces, especially with stroke services, and the severe impact of the underfunding of the last Conservative Government.

[Sarah Dyke]

I thank the hon. Lady, and it is so good to hear that her husband is making such a full and quick recovery.

World Stroke Day is a pertinent reminder that stroke must be well represented in the new 10-year health plan and that the Government must engage with patients, carers, and health and social care professionals, so that their lived experiences can help inform policy decisions.

NHS: Independent Investigation

Uma Kumaran Excerpts

Thursday 12th September 2024 Commons Chamber

[Wes Streeting]

The hon. Member is an experienced Member of this House, as both a former Chair of the Treasury Committee and a former Treasury Minister, so she knows how impact assessments are done at the Treasury. She knows that impact assessments of all the Chancellor’s fiscal decisions at the Budget and the spending review will be published at that time. She also knows, I suspect, that despite the withdrawal of the winter fuel allowance from some pensioners—it will be targeted at those most in need—they will still be better off because the Government have committed to maintaining the triple lock and to extending the warm home discount scheme and the available hardship support, so that pensioners are not left behind as we clean up the £22 billion mess that the Conservatives left behind.

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

Lord Darzi’s report lays bare the scale of the challenges that our NHS faces. Does the Secretary of State share my deep concern that because of the Conservative party’s dismal record, the progress made by the previous Labour Government on heart disease and stroke—of which I have had recent personal experience—is now in reverse? The number of people in England dying from cardiovascular disease before the age of 75 has risen to its highest level in 14 years.

[Wes Streeting]

I am delighted to see my hon. Friend in the House representing my old east end stomping ground. I wish her and her husband well in his recovery, and for their recovery, as a family, from his experience. Let me reassure her that, when it comes to the future of health and social care, we will clean up the mess that the Conservatives made. That will take time. The reverse in the progress made on cardiovascular disease, and the early warning signs of an uptick in smoking, are why we must put public health and prevention at the forefront. That is not just about what is good for the individual, their health and their chances; look at what the Office for Budget Responsibility says today about the long-term cost to the Exchequer. We have no choice but to act.

Oral Answers to Questions

Uma Kumaran Excerpts

Tuesday 23rd July 2024 Commons Chamber

[Andrew Gwynne]

The hon. Gentleman makes a really important point, and we are absolutely committed to ensuring that these services across England are better than those we have inherited. Of course, I completely agree with him about the need to improve these services in specific parts of the country, which is something we will be looking at in detail. However, I have to say to the hon. Gentleman that the one thing those of us on this side of the House will not be doing is what he has written about in “ConservativeHome”, which is health rationing and cutting back on treatment.

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

7. What assessment his Department has made of the effectiveness of NHS urgent and emergency care services.

[The Minister for Secondary Care (Karin Smyth)]

I congratulate my hon. Friend on her election, and I also pass on my best wishes to her and her husband, who I know recently suffered a stroke. We hope he makes a speedy recovery. We recognise the great work of NHS staff for them, and indeed for all our constituents every day, but we do know that the NHS is broken. The latest data confirms the terrible state in which the Conservatives left urgent and emergency care services, with one in four patients waiting longer than four hours in A&E. That is why Professor Lord Darzi will lead an investigation into NHS performance, and the findings will inform our 10-year reform of the NHS.

[Uma Kumaran]

I thank the Minister for her kind words today, and I also thank my right hon. Friend the Health Secretary for his wishes on the day. Mr Speaker, may I also take this opportunity to thank you and your staff for the care and kindness you showed me?

Residents in my constituency of Stratford and Bow are served by Barts health NHS trust, which includes Newham University, Royal London and Whipps Cross hospitals. In May, their A&E departments had the second highest volume of any trust in England and the highest in London. Overcrowding and capacity constraints mean that the staff at those hospitals are having to treat some patients in corridors rather than on wards. This is the broken NHS that we have inherited from the Conservatives. Will the Minister ask her Department to look at capacity issues at those hospitals and at how community pharmacy prescribing services may be used to alleviate some of the pressures?

[Karin Smyth]

My hon. Friend makes an excellent point highlighting the challenges particularly around hospital capacity, something well-known on the Front Bench with my right hon. Friend the Health Secretary representing a nearby area. This type of patient experience is unacceptable, but it sadly became normal under the last Government of 14 years. My hon. Friend makes an excellent point about pharmacies: they will have a central role in our future system, and I would of course be happy to undertake a visit with her.