Contribution
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.