(1 day, 12 hours ago)
Lords ChamberRead Hansard Text Watch Debate Read Debate Ministerial Extracts
Baroness Elliott of Whitburn Bay
That the Bill be now read a second time.
Baroness Elliott of Whitburn Bay (Lab)
My Lords, it is a great honour to be opening the debate on the Rare Cancers Bill today. I thank Dr Scott Arthur, the Member of Parliament for Edinburgh South West, who, when he drew number six in the Private Members’ Bill ballot in autumn 2024, chose this crucially important subject for his Bill. I also thank him for the energy he has put in to getting the Bill to this point, with the support of his amazing team. When my dear friend, Dame Siobhain McDonagh MP, asked me if I would meet with Scott with a view to taking the Bill through the House of Lords, I of course agreed. That conversation led to me having the privilege of supporting the Bill here today.
I want to set out the background to why this Bill is necessary and, in my view, urgently needed. In this Bill, the term “rare cancers” means cancers that affect fewer than one in 2,000 people, according to the UK rare diseases framework. But in many ways, I feel that the term “rare cancers” is misleading, because they represent 47% of all UK cancer diagnoses, which is 180,000 people a year being diagnosed with one of these rare cancers. However, disproportionately, they represent 55% of cancer deaths in the UK every year. While we frequently hear of the many amazing breakthroughs in cancer treatment—and we welcome all of them—that save and extend the lives of many people now living with cancer, in ways that even a decade ago were not possible, those amazing breakthroughs do not apply people diagnosed with one of these rare cancers. In many cases, treatment and survival rates for such cancers have not improved for decades.
With so many people dying of these rare cancers every year, something has to be done to improve the situation. The measures in this Bill take the first steps to do that. I want to talk a little today about why I feel this is so important, and why I wanted to help and support taking this Bill through Parliament. I remember as if it were yesterday the day Siobhain told me what her sister Margaret had been diagnosed with, and the bleak prognosis she had been given. Many people in this Chamber will know someone who is affected by one of these rare cancers and will have had that same experience.
I want to talk about a couple of things that have crossed my life to do with rare cancers. Twenty years ago, my son went to a new school for sixth form. One of the teachers was the mother of his friend at that school. There were various fundraising events for the charity she had set up for inflammatory breast cancer, which my family supported. Two years later, my twins went to the same school for sixth form. One day, my 17 year-old daughter, Georgia, came to me and said, “I am going to do a skydive to raise money for Mrs. Cummings’ charity”. She needed my permission because she was under 18, but there was no way I could not give it. That was the energy Mrs. Cummings had among her pupils.
A few weeks later, I met the incredible woman who was that inspirational teacher: Laney Cummings. I spent two days sitting and chatting with her while waiting for the weather to clear so my daughter to jump out of a plane. I knew why my children and many others thought the world of Mrs. Cummings. I had never heard of inflammatory breast cancer, but after those two days, I knew the symptoms and have been very aware of it ever since. Sadly, only weeks later, Laney died, having been clear of the disease for about eight years.
Then, I came to the awful day I learned how gravely ill Siobhain’s dear sister Margaret was: one of those days you never forget. Baroness Margaret McDonagh was a distinguished Member of this House for many years, known to many here today and a friend to many. I had worked with Margaret in the 1990s at the Labour Party. She was a brilliant organiser in a class of her own, and we became friends. If you were lucky enough to have Margaret as your friend, you were very lucky. She was one of the most loyal, kind and sometimes very scary friends you would ever have.
A week or so after Margaret fell ill, I was with Siobhain on a parliamentary visit, on a day when Margaret was waiting to have her first surgery. I asked how she was and what could be done. To my horror, Siobhain said she had a glioblastoma tumour. She was having surgery that day, followed by other treatments, but the prognosis was bleak. I could not believe that a strong, driven woman such as Margaret, who only three months before had been at our wedding, dancing the night away, full of energy, had in effect been given a death sentence.
Over the next 18 months or so, I watched Margaret fight her cancer with the same determination and energy she always had. Sadly, she did not win this one, and left us two days before her 62nd birthday in June 2023.
The consultant she had found, who treated her with some of the things not available on the NHS, was Paul Mulholland, who gave Margaret many more months with us. He is a man many of us got to know in Margaret’s last campaign, being driven with that same grit and determined McDonagh energy by Siobhain, to find a cure for glioblastoma. While the campaign has raised large amount of money, and now his patients are in its first trial, why do we have to raise money to do this in this way? Why are the huge research programmes within our health ecosystem not doing this?
That is where the Bill comes in. It is a very short Bill, but it will make a significant difference to what we have now and be a first step in starting to tackle the issues for people facing a diagnosis of one of these rare cancers. Its aim is to improve survival rates and outcomes. Clause 1 on marketing authorisations review requires the Secretary of State to review the regulatory framework for orphan medicinal products relating to cancer. The review must consider international regulatory approaches, and a report must be published and laid before Parliament within three years of Royal Assent. It applies UK-wide.
Clause 2, duties of the Secretary of State, which amends Section 1A of the National Health Service Act 2006, explicitly requires promotion and facilitation of research into cancers affecting no more than one in 2,000 people in the UK. It requires arrangements to be in place to enable identification and contact of potential clinical trial participants and creates a statutory role of national specialty lead for rare cancers. That applies in England.
Clause 3, information disclosure for research, amends the Health and Social Care Act 2012 to allow NHS England to disclose information where necessary to facilitate clinical trials into rare cancers, explicitly subject to existing data protection legislation and safeguards. It applies in practice to England.
The Bill has had cross-party support, government support, and the support of many charities, including the Brain Tumour Charity, Blood Cancer UK, Pancreatic Cancer UK and the Less Survivable Cancers Taskforce, to name a few. It passed through the House of Commons unamended and is a Bill that can genuinely impact many lives in a positive way. I look forward to hearing the many contributions today from noble Lords in this Chamber. I beg to move.
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.
Lord Patel (CB)
I thank the sponsors of this Bill, Dr Scott Arthur and the noble Baroness, Lady Elliott of Whitburn Bay, for bringing it to this House. Noble Lords must excuse me if I am a bit emotional after listening to the stories, because I too have experienced grief recently due to rare cancer.
I support this Bill strongly, and I hope we will give it swift passage through this House, unamended, so that it can be on the statute book. However, I have one or two concerns. First, I understand the need for the review relating to marketing authorisation, because we need drugs to be developed urgently and we therefore require regulation to change to allow for this. I look forward to listening to the noble Lord, Lord O’Shaughnessy, about the novel ways in which clinical trials can be conducted to speed up this process. I have concerns about the timelines. The Bill gives hope to people with rare cancers, from diagnosis of terminal illness to, we hope, treatment. That is what we hope the Bill will do, but a timeline of three years to carry out a review, with no plan for implementation of that review, seems rather long. Timelines for processes and progress are measured in years, while timelines for tumours to advance are measured in weeks. Patients with rare cancers cannot wait long, so I hope we will address the issue of timelines.
That applies also to the reports that are to be produced every three years, as indicated in the Bill. The idea that there will be a lead clinician for specialist rare cancers, with a duty to guide, co-ordinate and promote research for those cancers, is a good one. As we have heard, funding for rare cancers is abysmally low—about 1/10th of total government funding for research related to cancer goes to rare cancers. That must change, because 50% of deaths related to cancer are the result of rare cancers. Unless we change that, we will not make a bit of difference.
Research is important, but the bedrock of research is the requirement that all these rare tumours are genetically sequenced, so that drugs that already exist can be repurposed to treat other diseases. I will give the House an example: BRAF V600E, the gene associated with certain forms of melanoma, was found to be important in effectively treating certain kinds of brain cancer, and in successfully treating people with rare breast cancers. Charities such as Salivary Gland Cancer UK, which has given me a good brief, and Brain Cancer Justice have pleaded for genomic sequencing of tumours. We must do this for each and every case, to build up a registry—not just of patients who have suffered from rare cancers but patients who are on the register with a tumour.
As Brain Cancer Justice has asked for, we should make sure that tumours are frozen at the point that they are obtained. Without frozen tissues, we will not be able to carry out molecular studies in the future to determine whether there are genes that are affected, and therefore drugs that could be developed related to those genes. It is important that we create a registry, not just a database of patients. I hope this Bill gives much hope to patients, and I hope it will get on to the statute book.
Lord O'Shaughnessy (Con)
My Lords, before beginning my speech, I draw attention to my entry in the register of interests, particularly my involvement with Cambridge University Health Partners, Newmarket Strategy and Health Data Research UK, and in particular as a patron and adviser of the Tessa Jowell Brain Cancer Mission, of which more shortly. I congratulate the noble Baroness, Lady Elliott, on bringing this Bill to this House, and Scott Arthur on introducing it in the other place.
This House has an excellent and long-standing record of promoting innovation in care and research in cancer. The noble Baroness has already talked about and referenced the campaigning of our sadly departed friend Baroness McDonagh; we can think back even further to the Medical Innovation Bill, introduced by the noble Lord, Lord Saatchi, under not dissimilar circumstances.
Today, I pay tribute to, and encourage us to learn from, the example of another dear and sadly departed friend of this House: Baroness Jowell, or Tessa, as everyone knew her. Eight years ago this month, and only months before her own untimely death from glioblastoma—unfortunately, a not so rare cancer—Tessa inspired this House and this country to do more. She wanted us to give the word that both my noble friend Lady Coffey and the noble Lord, Lord Patel, have already mentioned, which is hope—hope to patients and hope to their families. When she finished, it was an extremely emotional event. Those who were there will remember it. The House rose and rightly applauded, in itself a highly unusual response, but one that was absolutely deserved.
It was my privilege to respond on behalf of the Government that day. We were able to make a number of commitments to move forward—of course, in a very typical way, Tessa was talking not just about her cancer but all cancers. Immediately afterwards, therefore, we brought together all the parties in the brain cancer space—charities, NHS England, the NIHR and others—and the Brain Cancer Mission was born, in her name and in tribute to her. Whether or not those are rare cancers—GBM is sadly quite common, while others, such as medulloblastoma, are incredibly rare—they all suffer from the same kinds of problems when it comes to treatment and research.
The aims of the Brain Cancer Mission are to improve the quality and equity of care, to strengthen workforces, and to accelerate research, development and innovation. I am delighted to say that, thanks to the leadership of so many people—the charities that have been involved, the team and others—it is doing, and has done, amazing things. It has supported 32 hospitals to improve the quality of care, 14 centres of excellence in neuro-oncology for adults and 11 for children, a fellows programme that is supporting hundreds of researchers, an academy that has trained over 1,500 neuro-oncology staff of all kinds, and the largest dataset for neuro-oncology ever established. In conjunction with the charity Brain Tumour Research, it has created a novel therapeutic accelerator.
Sadly, though, there is so much more to do. Brain cancer is the biggest cancer cause of death for children, and indeed for adults under 40. Take GBM, for example: late diagnosis, a 12 to 18-month prognosis, and only 5% of people surviving more than five years. Those statistics are repeated over and over for all brain tumours and for all rare cancers, and the standard treatments have been unchanged for decades. That is why this Bill is so important.
I want to speak quickly to the Bill’s three clauses. The first deals with marketing authorisations, which the noble Lord, Lord Patel, has already mentioned. The MHRA has made some progress through what it calls its international recognition procedure, but we need to go further and faster. I look forward to hearing from the Minister about what is happening to make sure we can accelerate those innovative treatments through to patients.
Clause 2 talks about a duty to support research. Eight years ago, at the government Dispatch Box, I made a promise that we would spend £40 million of NIHR money on brain tumour research, but we have not yet. The NIHR has been a willing partner, but we are not yet supporting that research to the degree we should. Again, I look forward to hearing from the Minister how that commitment will be met—and well beyond, and for other cancers, too.
Finally, Clause 3 deals with data. The noble Lord, Lord Freyberg, introduced a debate on this subject some years ago—in itself, it is a whole other subject that we could talk about. However, I strongly commend the clause, as it reflects the recommendations that were made in my own review of clinical trials. We need to go further—patients would be amazed to find out that their data is not being used to find trials for them. That is where the public is, and the law needs to catch up.
I end by again thanking the noble Baroness, Lady Elliott, for introducing the Bill, and reminding the House that Tessa invited us to approach the fight against cancer not with fear but with courage and compassion. That is what this Bill exemplifies.
Lord Blunkett (Lab)
My Lords, may I take one minute of the House’s time? I commend what was just said by the noble Lord, whom I was pleased to work with many years ago, when he was the Minister. I am very pleased that he recalled the last contribution that my long-standing friend, Baroness Tessa Jowell, made in this House. I had the privilege of being the speaker immediately after her, which was one of the most difficult occasions of my life—
Lord in Waiting/Government Whip (Lord Leong) (Lab)
I remind my noble friend that his name is not on the list to speak.
Baroness Finlay of Llandaff (CB)
My Lords, I am sure that, not only in this House but across the country, people are grateful to Scott Arthur MP and the noble Baroness, Lady Elliott of Whitburn Bay, for introducing this incredibly important Bill.
I declare that my working life has been in palliative care. I have looked after many children and adults with rare cancers, including some very close to me and some in my family. They often seem to have missed out on the research agendas at an early stage, yet they all are incredibly generous, saying that they know a study may not help them but it will help others.
In the 1970s I worked in a paediatric oncology unit as the early MRC trials were conducted for children with leukaemia. The prognosis was appalling but, because of the huge trials, the outcome is completely different today. This week I met a young man, Lewis, who described the intensive chemotherapy he endured— which is very novel and complex—as brutal, but he knew that without the research of previous years, he would not be alive and well today.
Ocular melanoma illustrates why the Bill is so urgently needed. These patients are very often young, and the primary treatment is to try to cure the malignancy, but that is not always successful. Once liver metastases occur, the standard NHS treatments available have remarkably poor outcomes and have an effect only in a small genetic subgroup, extending life expectancy by under six months. Some 60% of patients with metastatic uveal melanoma have no approved treatments available to them that are specific to their disease. They rely on other drugs developed for skin cancer, a completely different disease, which have limited if any benefit.
For 25 years, novel management of the cancer through percutaneous hepatic perfusion with melphalan chemotherapy, commonly known as chemosaturation, has been researched. It delivers high doses to the liver through a tiny catheter fed up through the groin, while filtering blood to protect the rest of the body. The liver deposits shrink, some dramatically, with an overall 84% clinical benefit rate with improved quality-of-life markers. Two UK centres, Southampton and Manchester, undertake this and are researching it. Survival improvement is, on average, over 20 months, which means that it is funded in the USA, Germany and several other European countries—but it is not funded here. Patients have to crowdfund to have this treatment that extends their lives significantly.
This is a very rare cancer. Generating the level of evidence required to submit to NICE has been difficult, and funding is not available. Research is essential. The national lead on rare cancers must be able to link across the UK for every person to have the opportunity to participate in research and benefit from advancements that develop through fast-track programmes. The national lead will need to address time-limited interim access pathways to clinically appropriate treatments for rare cancers—while longer-term commissioning decisions are under consideration—where published clinical evidence and specialist expertise already exist. Time is not on the patient’s side.
When will the clinical lead be appointed? Is the database already live across the whole of the UK? Will the lead be able to review individual funding requests for exceptionality where no alternative exists, so that patients with rare cancers are not left without access to life-extending treatments and, importantly, so that they and those who love them are not left without hope?
Lord Bourne of Aberystwyth (Con)
My Lords, it is a great pleasure to follow the noble Baroness, Lady Finlay, who always speaks with authority on these issues. I particularly agree with her and the noble Lord, Lord Patel, on the timescales; anything that can be done to compress them would be very welcome.
I associate myself with others who have congratulated the noble Baroness, Lady Elliott of Whitburn Bay, and thanked her for bringing forward this extremely important legislation. I also thank the honourable Member for Edinburgh South West, Dr Scott Arthur, for introducing the Bill in the other place. Although we spend a lot on cancer research funding, we do not spend nearly enough, and this legislation will help with that.
There are three key things about this legislation; they have been referred to, but I too will stress them. The first is about the role of the Secretary of State in relation to orphan drugs—treatments that pharmaceutical companies do not pursue because of a lack of commercial return. That is something that a review will highlight, and action needs to follow from that.
Secondly, the contact registry is vital. This legislation will facilitate that work and bring it forward. My noble friend Lord O’Shaughnessy has done a lot of work in that regard, and I am sure that his contribution to this legislation will be considerable.
Thirdly, the legislation also provides, as has been said, for a named individual responsible for overseeing the delivery of research into rare cancer treatments. Nothing could be more vital than having that champion against rare cancers, and I very much welcome that.
I will move from the schematic and general thrust of this legislation to the deeply personal. The fight against cancer—against any illness—should unite us all. Indeed, it does so irrespective of party, race, colour, gender, age or social background. The very words “rare cancers” lend to cancer an exoticism it does not deserve. To sufferers and to their families and friends, it is a cancer, plain and simple—a cancer that they want to combat and defeat.
One such sufferer, whom I know and who is in the Public Gallery today, is Dan Horrocks. He is a parliamentary assistant in the Commons. He is a father, a husband and a four-times cancer survivor. He has fought this dreadful disease—in his case, brain tumours—over the last 14 years. For Dan, and for millions of others of sufferers and their families and friends, this legislation is more than welcome, and it deserves our wholehearted support.
Baroness Morgan of Drefelin (Lab)
My Lords, I am absolutely delighted to take part in this Second Reading debate. Although we are only a third of the way through the speakers’ list, this has already been a very moving—as well as extremely well-informed, interesting and expert—debate. Perhaps it shows the House of Lords at its best. I congratulate my noble friend on bringing forward this Private Member’s Bill and on speaking so eloquently and personally about why she is doing this.
As we have already heard, rare cancers often have lower survival rates. When we look at the number of people being diagnosed with rare cancers, “rare” gives the wrong impression, because around 52% to 55% of all cancer deaths can be attributed to rare cancers. Acute myeloid leukaemia—AML—has a five-year survival rate of just 22%. Almost 80% of those who are diagnosed with AML today will not be alive in five years’ time—that is such a tough diagnosis—and only half will survive beyond six months.
I want to pay tribute in my short remarks to the work the charities do across the sector—charities that often have no staff and are peopled by those with direct experience of loss, of the cancer type itself and of dealing with real challenges in access to treatments. Those charities often come together in the organisation, Cancer52, which I am president of. They have long been calling for more investment in research into rare and less common cancers. They do this, as we have heard already, because research is absolutely key for transforming survival rates.
These cancers are diverse, complex and affect a large patient population, but, as we have already heard it so eloquently explained by the noble Lord, Lord Patel, research is difficult in rare cancers. Populations of uniquely sequenced types of cancer are very small, so it is extremely difficult. Ideas such as those that the noble Lord presented around sequencing and repurposing all progress through greater attention and more funding for research, which the Bill aims to deliver, and will further incentivise research and investment in treatment of rare cancer types.
I am particularly interested in the provision in the Bill to appoint a national lead for rare cancers to ensure that patients are offered participation, for example, in relevant clinical trials, for far too often patients diagnosed with a rare cancer are not offered the opportunity to take part in trials. Cancer52 recently did a survey of 1,400 patients and found that 82% were not offered the opportunity to participate in a clinical trial. A Leukaemia UK research survey echoed this sentiment, finding that half of all leukaemia patients were not given the opportunity to participate in a trial.
I support the measures in the Bill. I support the need to create a focus on rare cancers, on orphan medicines and so on. I look forward to hearing from the Minister an update for the House on the work being done by the Government, through the development of plans such as the cancer plan, to tackle the real challenges of access for patients with rare cancers.
Baroness Browning (Con)
My Lords, it is a great pleasure to follow the noble Baroness in her contribution this morning. This short but very important Bill was brought from the Commons in July last year. Many of us feel we have waited a very long time for it to appear on the Floor of this House, so I very much welcome it today.
I was first contacted about it by one of the many charities which are very involved in this, Pancreatic Cancer UK. Sometimes, when we hear of cancers, whether we are personally involved or not, we are quite surprised that this cancer is regarded as a rare cancer and to find that there are so many of them—well into three figures. As we have already heard from the noble Baroness, Lady Elliott, 47% of cancers diagnosed each year are for rare or less common cancers. They account for 55% of cancer deaths and include some of the lowest survival rates. In the past, I have been very interested and had communication with head and neck cancer charities and blood cancer charities. Even within one charity, there will be many cancers that are regarded as a rare cancer.
Of course, the Bill seeks to redress these poor survival rates with greater focus, particularly on research. The Less Survivable Cancers Taskforce supports the Bill. It says that the Bill would ensure that there is a named lead in government, as we have already heard, with a responsibility to support research and innovation for rare cancers. As it stands, these cancers often struggle to attract research funding and attention compared to other diseases. A named lead would ensure that there was a strategic focus on rare cancers in government for the first time. This would help to co-ordinate efforts, look at gaps comprehensively and ensure that these cancers become the main priority. I hope that when the Minister responds she might flesh out a little bit how she sees that role developing.
The Bill would also ensure that patients can get better access to and find relevant research and clinical trials. I think many of us have encountered people who, in diagnosis of a rare cancer, or very often just any cancer, are desperate to find trials that are going on. Where do you start to look? Who holds this information? This is a very important part of the Bill. Currently, many patients with rare cancers miss out on potentially life-extending clinical trials simply because they do not know about them. The current system makes it difficult to match eligible patients with appropriate trials, meaning that trials can struggle to recruit enough participants and, potentially, promising treatments cannot move forward. Again, I would like it if the Minister could tell us how the medical profession, starting at primary care, accesses this sort of information when a patient is in front of them.
The Bill places a duty on the Government to review and potentially strengthen orphan drug regulations. The orphan drug regulations aim to incentivise research into rare diseases, because the current incentives for pharmaceutical companies to develop treatments for rare cancers are not strong enough.
I congratulate the sponsors of the Bill in both Houses, Dr Scott Arthur MP and the noble Baroness, Lady Elliott of Whitburn Bay, who brought it to the Chamber this morning in such a lucid way. I hope I am not being optimistic in saying to the Government that Private Members’ Bills never succeed unless government supports them; we all know that. I hope the Minister is going to support this one.
Lord Kakkar (CB)
My Lords, it is a great pleasure to follow the noble Baroness, Lady Browning. In so doing, I congratulate the noble Baroness, Lady Elliott of Whitburn Bay, on the very thoughtful way in which she has introduced this important Bill. I must remind noble Lords of my own registered interests as chairman of King’s Health Partners, chairman of UK Biobank and chairman the Office for Strategic Coordination of Health Research.
We have heard that rare and less common cancers represent a substantial burden of disease—some 47% of diagnoses and some 55% of deaths. This is striking, because the poor clinical outcome has been attributed to a lack of research, a lack of co-ordination in care and a lack of application of resources to ensure that clinical outcomes can be improved. The Bill before your Lordships today addresses all these matters by ensuring that there is greater accountability, that regulation is improved and, most importantly, that we can drive forward a meaningful research effort for a series of cancers that represent, by themselves, small numbers of patients but collectively represent, as I have said, a substantial burden.
It is very important, and indeed we have heard it this morning, that the appointment of a national specialty lead for rare cancers is achieved quickly. We have seen in other areas and domains of clinical practice the impressive results achieved through the appointment of such leadership. For instance, the appointment of a national specialty lead for cardiovascular disease some 20 years ago was attended by a substantial reduction in cardiovascular mortality. We have also seen the impact that such individuals can have on the research agenda.
Regulation is vital in incentivising innovation. Numerous reviews and assessments have determined that, in many areas, our regulation is wanting. In this area, the regulation has the potential for a substantially negative impact on innovation, and it is innovative therapies that are going to improve clinical outcomes, so review of regulation is critical. I share the view of my noble friend Lord Patel that the three-year window for delivery of the review of the regulatory framework appears far too long and should be addressed by His Majesty’s Government.
The final part of the Bill is to enhance and promote the research effort. This is critical. The mandate that the National Institute for Health Research, as part of its Be Part of Research initiative, establishes special opportunities for registers for rare cancers is critically important.
However, beyond that, as we heard from my noble friend Lord Patel, it is important that we go beyond just knowing where the patients are and providing patients with the opportunity to participate in clinical research. The register should go beyond and provide the opportunity for appropriate genotyping and phenotyping of rare cancers as a resource to drive future research effort.
In that regard, the sharing of data within the NHS for research purposes is critical. We saw the benefits of that during Covid, when the Secretary of State issued a COPI notice that allowed the sharing of primary care data with UK Biobank and allowed researchers therefore to use that important resource to identify many treatment options and a better understanding of Covid-19.
The sharing of data that will be facilitated as part of this Bill is probably one of the most important elements that will drive forward the opportunity for improving clinical outcomes for those suffering from rare cancers.
Lord Blencathra (Con)
My Lords, it is a bit frightening for me, as a layman, to follow the noble Lord, Lord Kakkar, one of Britain’s top professors of surgery. I congratulate the noble Baroness, Lady Elliott of Whitburn Bay, on introducing this small but important Bill. I support it since I have had a couple of run-ins with cancer in the past—but, so far, I am outrunning it.
I had my first cancer at the age of 32, just two years after being elected to the House of Commons. That was a bit scary, but the excellent doctors at the then Westminster Hospital, just round the corner, fixed that. My Yorkshire Whip visited me and said, in that proper style I admire in Whips, “Eh, lad, you’d better not die on us—we can’t afford another by-election”. However, I am particularly grateful to the brilliant men and women of the Royal Marsden, who chopped out some nasty bits a six years ago. It was not a rare cancer, and in fact it was quite common, but it kills 18,000 people per annum in the UK.
Before looking at the Bill properly I had assumed that there would be a dozen or so rare cancers, but I am shocked to discover there are more than 230 different ones, affecting all ages and every part of the body. Diagnosis of rare cancers can be very difficult, leading to delays, and a lot of research information is often limited to common cancers.
In the time available, I will concentrate on Clause 2. Science is moving at breathtaking speed, and one of the fastest innovative cancer centres in the world is the Royal Marsden Hospital in Fulham. The Marsden and its partner, the Institute of Cancer Research, are translating precision diagnostics, early phase drug development, immunotherapeutics, advanced cellular and gene therapies and AI-driven imaging and data science into patient care—techniques that redefine what “radical” treatment for rare cancer means today.
The Royal Marsden NHS Foundation Trust, in partnership with the Institute of Cancer Research, is widely recognised as a leading expert, one of the top specialist cancer centres in the UK, and in the top four worldwide, for the diagnosis, treatment and research of rare cancers. When we get to Committee, I would like to amend Clause 2 to say that we do not want to appoint a person to be known as,
“the National Specialty Lead for Rare Cancers”,
since I do not think there is a single person capable of undertaking that task. However, the Royal Marsden’s record makes it uniquely qualified to lead this national effort.
It is astonishing what breakthroughs the Royal Marsden is making. There are active programmes at its National Institute for Health and Care Research centre—the Marsden has the only one in the country and has been nominated for it—which translates discoveries from the test bench to bedside care, right across eight translational themes.
The Royal Marsden is noted as Europe’s largest cancer centre, whose expertise is enhanced by more than 2,500 cancer specialists who collaborate in weekly multidisciplinary team meetings to develop personalised treatment plans. It was the first hospital in the UK to use the amazing Da Vinci robot with four arms that have microsurgical tools at the end that can get to the small cancer bits that surgeons’ big hands cannot. If your Lordships want to see something amazing, Google search “Da Vinci robot” and look at the demo. A grape is cut in half, and this robot stitches it together again without tearing the skin. That is why, when they gave me a choice, I said, “I’ll have the robot operating on me, please”, and it did it quite successfully. The Marsden’s Sarcoma Unit is one of the largest in Europe and a world leader in sarcoma research and treatment; as noble Lords present who are surgeons will say, that is one of the many rare cancers the Marsden specialises in.
In closing, the Bill’s measures—especially the careful review of orphan medicinal product authorisations in Clause 1—will protect the incentives that turn radical science into real cures. Putting it simply, if we want the Bill to work, appointing the Royal Marsden as the specialty lead will give the UK the leadership, infrastructure and reach required to make the aims of the Bill a reality.
Lord Mott (Con)
My Lords, I begin by thanking the honourable Member for Edinburgh South West for first introducing the Bill in the House of Commons, and the noble Baroness, Lady Elliott of Whitburn Bay, for bringing it to the House today.
Although I have campaigned extensively on prostate cancer, which is the most common cancer in England, it is important that all cancer patients get the treatment they need. Taken as a whole, rare and less common cancers account for nearly half of all cancer diagnoses in the UK today, as we have heard from a number of noble Lords already. Today I will focus on two key areas: regulation and research.
The MHRA is a highly respected regulator, with patient safety rightly at its core. However, rare cancers pose unique regulatory challenges that cannot always be addressed using the evidentiary standards designed for common conditions. Patient populations are small and often geographically dispersed. Randomised control trials may be impractical, and real-world evidence and international data become even more important. The review of marketing authorisations for orphan drugs is therefore welcome, and it is important that we examine how much flexibility exists within the system to support innovation, including greater use of adaptive licensing, conditional approvals or rolling evidence models, better aligning with other jurisdictions so that data from international trials can be used here, and ensuring a clear pathway for early dialogue between researchers, clinicians, regulators and patient groups so that trials are rigorous and feasible, so that, ultimately, life-saving and extending treatments can be approved as quickly as possible.
There are also challenges around research design. Traditional models of cancer research have delivered huge progress, but they are not always well suited to rare cancers, as we have heard today. By definition, rare cancers have smaller patient cohorts, meaning limited recruitment opportunities. Data may be less robust due to the smaller sample size, and the commercial market for treatments may be less attractive to investors. The Bill’s emphasis on facilitating research and improving patient identification for trials is therefore critical, but this must go hand in hand with regulatory improvement to see safe treatments quickly brought to market.
I will briefly highlight two examples. The first, which has already been mentioned, is glioblastoma, a rare and aggressive brain tumour. Survival rates have not improved in more than 50 years, and treatment options remain limited. Yet the nature of it means that research is complex, trials are difficult to design, and patient numbers are necessarily small, making innovation, improved trial access and regulatory flexibility essential if outcomes are ever to improve.
I briefly return to prostate cancer. Within it are rare and aggressive subtypes that behave very differently from early-stage prostate cancer. Rare subtypes of common cancers such as this can face challenges strikingly similar to those experienced by patients with rarer diagnoses. This is not about competing for resources but highlighting the complexity of these issues.
I support the Bill as one with potential to make a real difference for patients whose diseases have too often been overlooked. We need a research environment that can gather robust data, reach the right patients and be supported to develop new treatment and a regulatory framework that reflects the unique challenges that come with rare diseases to get safe and effective treatments approved as quickly as possible. If we get this right, we can not only improve outcomes for people with rare cancers today but reshape how we think about evidence, regulation and fairness in healthcare for years to come.
Baroness Grey-Thompson (CB)
My Lords, I thank the noble Baroness, Lady Elliott of Whitburn Bay, for bringing this Bill to the Chamber today and I pay tribute to two Members who are no longer with us, Baroness McDonagh and Baroness Jowell, who both had a huge impact on my career.
For about the last year, I have been working with Ceri and Frances Menai-Davis and their campaign to highlight the challenges that face families who have a terminally ill child. Their website, It’s Never You, clearly highlights many of the issues. Their son Hugh had rhabdomyosarcoma, a rare cancer affecting muscles attached to bone, which spread throughout his abdomen. He was diagnosed in late 2020 and passed away in September 2021 at the age of six, after undergoing intensive treatment including radiotherapy. His parents described receiving the diagnosis and the trauma they experienced as being thrown into an ice bath with a concrete weight tied around your feet. Through my work with them, I have an amendment to the Children’s Wellbeing and Schools Bill, which may be debated on Monday, asking for more research to find the true extent and impact that rare cancers have on families and seeking to require the Secretary of State to report to Parliament on the barriers preventing parents being at the bedside of critically ill children.
The Journal of Pediatric Psychology and the Lancet Psychiatry have said that 30% to 50% of parents with critically ill children meet the diagnostic threshold for PTSD. The BMJ Open has said that parents are more likely to experience anxiety, depression and suicidal thoughts, and mothers have a 50% increase in mortality. While there is no current target for research or funding allocation to be spent on paediatric cancer research, it appears that only 3% of current national spend is put into this area because it is rare, but we have heard in your Lordships’ Chamber today that these cancers are far from rare. We have to look beyond seeing it as a market to see how we can truly help people. I would like to see a minimum annual research target being set for rare childhood cancers, and progress being published.
I strongly support this Bill, especially the creation of a national speciality lead, and I hope we can do that at pace. The impact of the Bill will be felt by so many, not just those with a cancer diagnosis but their families as well. We have heard that a number of organisations support the Bill. Cancer Research UK and others have highlighted how many fewer treatment options there are for those with rare cancers. Also, brain cancer patients have been in touch with me to say that they need far more support. This week Ceri and Frances Menai-Davis hosted an event in Parliament, and they now campaign under the banner Parents Deserve Better. Yes, they do, and this Bill will help with that.
Lord Polak (Con)
My Lords, it is an honour to follow my friend, the noble Baroness, Lady Grey-Thompson. The noble Lord, Lord O’Shaughnessy, reminded us of that special day when Tessa Jowell spoke. I was sitting here and—I think this is what the noble Lord, Lord Blunkett, was trying to say—the noble Lord, Lord O’Shaughnessy, replied in that difficult moment with sympathy, empathy and dignity, and I will always remember that too.
I declare my interest as vice-chairman of the All-Party Group on Brain Tumours. I was diagnosed with a brain tumour back in 1988 and I am one of the lucky ones. Following the words of the noble Lord, Lord Patel, whose bravery and pain I understand, many patients are unaware that tumour tissue removed during surgery may be used for diagnostic refinement research and the development of future treatments, and that patients have choices about how that tissue is stored. This is acute in brain cancers and other rare cancers where diagnosis is devastating, treatment is urgent and patients and their families face complex decisions at moments of extreme distress. In the forthcoming cancer plan I believe there should be a commitment to improving public and patient awareness of consent, including for tissue use in research; a commitment to clear and consistent national messaging, developed with patients and carers, about how consent can work; and a commitment to find ways for the public to give advance informed digital consent, rather than at that moment of crisis. I pay tribute to Professor Kathreena Kurian, professor of neuropathology at the University of Bristol Medical School. She has advised me, she is a friend and, sadly, some months ago she lost her own husband to brain cancer.
Finally, earlier this week I had the privilege of meeting two courageous young men, Tom Riley and Dan Horrocks. My noble friend Lord Bourne has spoken beautifully about Dan. Both are suffering from brain cancer but, rather than just suffer, they have set up a grass-roots organisation called Brain Cancer Justice, a movement of patients and families living with the consequences of, as they describe, underresearch, fragmented trials and a lack of accountability. They agree that while the Bill in itself is modest, it is, however, essential. I congratulate Dr Scott Arthur MP and the noble Baroness, Lady Elliott, and thank them for their leadership. The Bill provides that leadership that will improve access to clinical trials and test whether the incentives for rare cancer medicines are indeed fit for purpose. I am honoured to support the Bill, but I urge the Minister to find a way to get it on the statute book as quickly as possible.
Lord Mendelsohn (Lab)
My Lords, I thank the noble Baroness, Lady Elliott of Whitburn Bay, and congratulate her on bringing this Bill to the House and enabling all of us in this Chamber to focus on these issues. We have heard from a number of colleagues about their own personal stories and people they know, and of course those we admire. I think today of my dear friend, the former Member for Oldham East, Phil Woolas, who is challenging and fighting for his life against one of these terrible cancers.
I declare my interest as trustee and director of the Follicular Lymphoma Foundation, the UK arm, the US arm and the Israel arm. It is an international charity established to try to find a cure for follicular lymphoma. Because my real declaration of interest is that my wife suffers from this cancer, an incurable but chronically treatable cancer. She, being the dynamic person she is, decided, having been convinced by some brilliant researchers here that we were on the cusp of the potential for curative options, to set up a foundation to do so, which we have done. She was diagnosed in 2016 and started treatment in 2018, curtailed during Covid. She is in remission, but it will come back at some point. I am very pleased to say that a huge amount of progress has been made, and whereas there was only one option for the next line of therapy, there are now a considerable number. The thing I am disappointed about is that most of those are available outside the UK and not in the UK, so if she is to be treated in the most effective way, it cannot currently be in the UK. I hope that will change by the time her condition comes back, because this is the point that I really want to get across about where we are.
The Bill raises the importance of research and focuses on rare cancers. We run by some traditional notions that these things have inherent difficulties and challenges that are not changing with time. They are. In the case of follicular lymphoma, advances that we can make in research and the pursuit of a cure will certainly be contributory factors to helping 32 other cancers that have very significant genetic sharing with the condition that we are focusing on. The use of data and the sort of stuff that used to make these things really difficult are now reasons why the opportunity in science is so large. That is why we can really look to the future as a wonderful moment of opportunity when we can cure some of these cancers, not in most cases by one silver bullet but by a variety of treatments and different modalities. This is why the Bill is so essential, and not just the Bill but the support and commitment from the Government.
We are a great country with great clinical practitioners and researchers: the noble Lords, Lord Kakkar and Lord Darzi, offer a perfect illustration. We have some of the finest. We have great institutions. We have a great history behind this. We have scale and we have opportunities not fully tapped with the NHS, but we are falling behind because of things that we are not doing in research, and actually in culture, because of the consequences of the lack of research money, from Brexit and other things, even with philanthropy and capital. It is hard for our charity to apply the money we could in the UK. We apply much more money in other places, including countries that have public policy supporting this, because it is easier to do so, especially in areas of rare cancers. It is so important to make progress on this. As someone who is committed to doing the best we can here, it pains me when we have rounds of funding where we are not giving to the UK what we are to other places, even countries with a smaller population, where data is so important. We use a place such as Israel, which is able to scale what it has in a way that we cannot. We are the country that should be in the lead on this.
Finally, I turn to the point that CAR T-cell therapy is a key therapy for us; it will be a transformational therapy for so many cancers. The problem that we have in this country is that we are reliant on trials and are not using it as a treatment. It is not just about the fact that Charlotte, a patient suffering from cancer whom I know, was told that this will be the next line of therapy but it is no longer available. Even King’s, one of our great institutions, cannot recruit people for it. The real challenge here is that we have to send these samples to another country to get them checked, whereas other countries have labs in the hospital that do these treatments.
If we focus only on doing the best we can do and supporting the research, but not getting it into treatment so that we have the right relationship with pharma and biotech, we will restrict ourselves. This Bill is a start, and we have to support it.
Lord Randall of Uxbridge (Con)
My Lords, I am humbled to follow the noble Lord, Lord Mendelsohn, and the previous contributions. I congratulate the noble Baroness, Lady Elliott of Whitburn Bay, and Dr Scott Arthur MP on the Bill.
I do not know much about all this, so noble Lords might wonder why I am speaking in this debate, which seemed to me to be something for people with knowledge, specialities or personal experience. It is because of two of my former constituents. One is Councillor Becky Haggar, a former Mayor of Hillingdon, whose husband sadly passed away from cancer; she set up the Hillingdon Brain Tumour & Injury Charity. The other is another Hillingdon resident who has been in constant communication with me—and in such a kind way considering, as far as I can see, her son is going through terrible treatment. I told her, “I’m going to speak in this debate because I want to give support. I’m not an expert; I just want people to know that they have my support”. I told her that I would have four minutes to speak and asked, “What’s the most important thing to say?” She said, “Appoint a national specialty lead”. Advocates, along with Brain Cancer Justice, want a national cancer lead as an essential element of this Bill.
Speaking of brain tumours—there are others, I know—and their complexity, she said, “It’s vital that the Government’s appointee fully understands brain cancer and other rare cancers to prevent them being overlooked, especially since brain cancer remains the leading cause of cancer-related deaths among children and people under 40”. An immediate nomination and appointment are urgently needed as patients cannot afford to wait. This should be a top priority integrated into the national cancer plan. Data shows that, although 20% of research funding goes to rare cancers, they account for around 40% of cancer deaths. So, given their complexity, brain cancers must not be overlooked when the UK Government launch initiatives such as the NHS’s national cancer vaccine launch pad.
We must also have awareness campaigns. The fact is that, very often, most of these people just present to A&E as an emergency; in fact, 40% to 60% of diagnoses are done after presentation to A&E. As we have heard from noble Lords previously—and as we will presumably hear from noble Lords after me—there are two things to say here. First, on the urgency of this, I urge noble Lords not to put down any amendments if that would make this process go on for longer than we would like. We know how it works, as we have seen before in Private Members’ Bills.
The other thing that comes through, plainly, is hope. No doubt there are people throughout the country who have just been given a devastating prognosis as we have been speaking. We do not know where—it could be among us here—but there will certainly be some such cases. This Bill may not be the answer, but it will give hope, so I offer it my full support.
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.
Lord Moylan (Con)
My Lords, it is a privilege to speak after my old friend, the noble Lord, Lord St John of Bletso. I declare an interest as an officer of the APPG on Less Survivable Cancers; that term is more or less interchangeable with “rare cancers”, as used in relation to this Bill. I want to take this opportunity to thank the wonderful young people who work for the Less Survivable Cancers Taskforce, which stands behind the APPG and brings together so many of the charities—such as Pancreatic Cancer UK, which has been mentioned, as well as brain tumour charities, cancer charities and so on—that work to try to achieve something on this front.
Although we have waited, as my noble friend Lady Browning said, a long time for this Second Reading, the timing is quite apposite, because this is Less Survivable Cancers Awareness Week, and we are contributing to that as much as anything else.
I also want to declare that, like other noble Lords, I am a survivor until now of a less survivable cancer, having been diagnosed with a terminal oesophageal cancer two and a half years ago, which, remarkably, has been in complete metabolic remission for most of the last two years.
I want to congratulate, of course, Dr Scott Arthur and the noble Baroness, Lady Elliott of Whitburn Bay, on introducing the Bill. I want to make only two points. First, I want to depart slightly from the noble Lord, Lord St John of Bletso, in raising a tone of criticism, or a word of criticism, of what we might call big pharma. In my case, the immunotherapy drug that was probably crucial in achieving my recovery was developed for breast cancer. Breast cancer is, of course, a cancer which is profitable for pharmaceutical companies, so they have developed some wonderful drugs. My cancer is part of a group of cancers that have come under the heading of GNI cancers. GNI cancer oncologists have adapted this drug and used it to treat oesophageal cancer and other cancers of that sort. So we must be careful of shunning the big pharmaceutical companies. They are the source of much of the innovation, and we are seeing a staggering pace of innovation—that was mentioned by the noble Lord, Lord Mendelsohn. It is up to us to work with them and to get the best out of them as far as we can.
Secondly, it is easy to think that these cancers have suffered from a sort of casual neglect, that we just have not bothered with them or put enough money into them. In fact, they present acute difficulties of their own as far as research is concerned. One of them is conducting trials. The fact is that people diagnosed with one of the less survivable cancers tend to die very quickly. Many of them have very short survival periods, and conducting trials with patients who are dying very fast is very difficult. It is very difficult to construct a trial which gives you the results that you want. I have great hope in the national lead for rare cancers being appointed. The right person can make a real difference in pulling things together so that we can get some trials going for these cancers that could produce statistically valuable results.
The other thing we should be doing is ensuring that the transition from diagnosis to treatment is rapid. That does not require research; it is in our hands already, because it is, in essence, an organisational matter.
If you are presented suddenly with a cancer diagnosis, and it is usually a sudden event, and you are told you are facing death in a year or so—a short period ahead—you want to know that the Government and the state are on your side. This Bill is a good example of government showing that it is on the side of people facing very difficult circumstances.
Lord Freyberg (CB)
My Lords, this Bill touches a matter close to my heart, on which I have worked, on and off, for over a decade since my sister, Annabel, fell ill with mesothelioma in 2012 and her daughter, my niece, Blossom, died of neuroblastoma a few years earlier.
While survival in common cancers has improved over time, progress has been limited in less common cancers, as we have heard, and almost negligible in rare cancers, reflecting the limited research funding available for these awful diseases. As a result, this Bill has my full support, and I thank both sponsors for taking it through both Houses.
It being an enabling Bill, I thought it would be most useful to share lessons learnt over that time, including the risks that policymakers must navigate in its delivery, the possible role of new technology, and our return to Horizon Europe to accelerate the delivery of benefits to patients with rare cancer from any new funding.
First, these cancers and other neglected diseases such as chronic fatigue syndrome and long Covid face a structural Catch-22. With no historic research funding, they have limited research capability. When their few brave clinicians try to secure funding, they compete against academics in well-funded areas with resulting strong citation track records. As a result, they cannot compete and fail to get funding, perpetuating the cycle. UKRI is loath to create disease-dedicated funding streams in case scientific quality falls and “citations per R&D pound invested” drops. A solution to this Catch-22 must be found. Perhaps UKRI could bundle all these neglected diseases together, which would maintain competition and so scientific quality, but on a much fairer basis. I would urge Ministers to direct research funders to explore the merits of such a scheme.
Secondly, the fastest way to save lives is care quality improvement. As the noble Lords, Lord O’Shaughnessy, Lord Kakkar, Lord St John, and others, have rightly drawn attention to, while the UK has great data for such analysis, we fail to put its insights rapidly into the hands of clinicians who can use it. For instance, there are recurring delays in processing pathology reports for the national cancer surgery audits, driven by the need to manually process significant volumes of unstructured data. Norway has automated this process, and this seems mostly a matter of appropriate technology deployment. Perhaps the noble Baroness, Lady Blackwood, in her new role as chair of the Health Data Research Service, could help expedite such a change.
Finally, we all know that the UK’s cancer outcomes lag those of our European peers. I would like to commend to noble Lords the amazing anal cancer programme at Leeds Teaching Hospitals called atomCAT. Using privacy conservation technology, they have developed a way for an international consortium of hospitals to rapidly compare clinical practice. That provides direct exposure for UK clinicians to learnings in better-performing peer countries so accelerating UK cancer care improvement.
Careful design of the planned investments in health data can allow such safe digital comparison not only between our four great nations but with our European peers, which is essential, scientifically, in these cancers given their rarity. Now that we are back in Horizon, such investment would also position our digital researchers to compete for and secure European funding. I wish this Bill a speedy passage.
Lord Blunkett (Lab)
I apologise to the House for my premature and ill-timed intervention earlier. After 10 years in the House, I need to go back and sharply revise my understanding of procedure. I am grateful to the House for the opportunity of being able to intervene.
I am emotionally moved today by two things: first, by two of my most long-standing and closest friends, a married couple, both of whom were diagnosed with different cancers in the autumn and are now supporting and caring for themselves, and, secondly, by the timely intervention from the noble Lord, Lord O’Shaughnessy, and reminder of the very powerful final speech of my long-standing friend, Baroness Tessa Jowell, in this House. I thank the noble Lord for his part in carrying that legacy forward and the important concentration on research.
I only wanted to do two things. The first was to congratulate my noble friend Lady Elliott on taking this forward and to hope that, in the next three months, we can get Royal Assent. The second was to add that rare cancers sometimes morph into being much less rare. The more we can do to examine those so-called rare cancers, the more likely we are to be able to intervene early and prevent developments which would otherwise lead to death. If we can do that, early understanding of their development and the ability to save people in the future will be much more likely.
I am very grateful for the mention of oesophageal cancer this morning. In the past oesophageal cancer was a rare cancer. People were sometimes wrongly diagnosed with stomach cancer, but it was relatively rare. Sadly, it is no longer. I recall my very good friend, Lord Bob Kerslake, who was from and remained in Sheffield. He died from oesophageal cancer not so long ago.
Today, we have the opportunity to turn the spotlight on those rare cancers that affect a very large number of people and, in some cases, will affect greater numbers in years to come as environmental, societal and dietary changes have their impact. I thank your Lordships for the opportunity to intervene.
Lord Palmer of Childs Hill (LD)
My Lords, I must thank the sponsors of this Bill and congratulate the noble Baroness, Lady Elliott, who spoke of breakthroughs, which are very important. As we might have expected, we have heard heart-rending stories and stories from personal survivors. When we discuss the Bill, we must remember our dear friends and relatives, as many noble Lords have said.
Rare cancers make up about 24% of cancers diagnosed in the UK and the EU per year. This includes cancers of children and young people. My reason for speaking is the delays that children and young people with cancer are experiencing when applying for the disability benefits—DLA and PIP—to which they are entitled. My plea to the Minister is to add to the Bill about rare cancers a removal of the qualifying period to reduce the delays these people experience.
Is it acceptable for young people with cancer—some of the cancers are rare; some are not—to wait seven months or more to receive their disability benefits? Every year, about 4,200 children and young people under 25 are diagnosed with cancer, some instances of which are rare cancers. Beyond the medical impact of cancer, children, young people and families face a hidden and often devastating financial burden from living with cancer. It is about £700 in additional costs every month for items including travel to hospital, food, energy bills, childcare, parking, accommodation and more. Due to the immediacy, intensity and impact of cancer and its treatment, most young people and families experience the burden of these additional costs immediately after diagnosis. More than three in five—64%—face extra expenses within the first month. Within three months, this increases to four in five—79%. While the impacts of cancer persist beyond treatment, and benefits are still needed after treatment, the most significant costs for many occur during treatment, particularly during the crucial first few months following diagnosis.
These sudden and unexpected costs are often coupled with significant drops in income of, on average, £6,000 a year. For one in three, this could reach £10,000. However, the disability benefits system, designed to support people with this financial impact, is not meeting those needs due especially to delays. We have heard many noble Peers talk about delays—in receiving benefits as well as in receiving treatment.
To address these delays, children and young people with cancer and their families should be entitled to access welfare benefits immediately following diagnosis and should not be subject to a full qualifying period. The application process for welfare benefits should be simple, efficient and streamlined; it should utilise medical evidence to quickly determine eligibility for payments.
We are dealing here with rare cancers, but we must also talk about the stresses that people have when they are diagnosed with cancers and how they deal with them. I hope that, in replying, the Minister will address these delays, but these Benches support the Bill.
Lord Kamall (Con)
My Lords, I begin by thanking the noble Baroness, Lady Elliott of Whitburn Bay, for introducing this Bill in such a clear and moving manner. I thank all noble Lords who have spoken in this debate and echo the sentiments that they expressed. It is pretty clear that many of your Lordships from all Benches, if not all who spoke, welcome this Bill—as did Members in the other place.
I also thank Dr Scott Arthur, who introduced the Bill in the other place. If noble Lords have not already done so, I strongly encourage them to read Hansard on the Second Reading debate in the other place from 14 March last year. Just like the debate today, it contained many powerful and personal contributions sharing the devastating impact on patients and their loved ones. I particularly thank those noble Lords who have shared their own experiences, however difficult and emotional it may have been. I could sense a few tears being shed around the House.
I also have a personal story. I lost my mother-in-law and, despite growing up in an era of Les Dawson jokes about mothers-in-law, I loved her very dearly. Sadly, she died from a cancerous brain tumour a few years ago.
The noble Baroness, Lady Elliott, has clearly and persuasively set out the purpose and content of the Bill, but it is important to look at its three important tasks. The first is to place a legal duty on the Secretary of State for Health and Social Care to promote research into rare cancers, driven by a national cancer specialty lead for rare cancers. As was mentioned by two of the experts in this House, the noble Lords, Lord Kakkar and Lord Patel, and by my noble friend Lord Randall, a role—a specialist lead—to drive this forward is really important. An example was given of the effectiveness of specialist leads in other areas.
The second task concerns the importance of improving access to clinical trials, particularly through the use and better sharing of data. From some of the stories that we have heard today, people cannot believe that we are still not sharing some of that data, which should be available.
The third task is the requirement for the Government to conduct a UK-wide review of the regulatory framework for orphan medicine and products used to diagnose, prevent or treat cancers.
These three objectives are sensible and laudable, but how do we deliver them? How do we move from aspiration to implementation? As the excellent briefing from the Library makes clear, we are dealing with a stark reality because rare cancers, despite the name, account for almost half of all cancer diagnoses in the UK each year. My noble friend Lord Blencathra made the point that there are over 200 rare cancers and he referred to how many people they affect, yet they are often harder to diagnose and treat than the most common cancers. There are many reasons for this, a few of which were explained today.
Patient populations are smaller and more dispersed, which makes recruiting sufficient numbers for clinical trials very difficult. That point was made by my noble friend Lord Moylan and the noble Lord, Lord Mendelsohn, and it was addressed in the review by my noble friend Lord O’Shaughnessy. Another reason is that there are fewer commercial incentives to develop new treatments compared to medicines that may be used more widely.
I apologise for not declaring my interests at the beginning: I am a professor of politics and international relations at St Mary’s University in Twickenham, and I am helping to open a new medical school there. I am also teaching a module to MBA students on healthcare policy and strategy. I also have an academic link to the University of Buckingham, although not to the medical school there, but I just want to make sure that I have covered all bases.
As an academic, I was looking at some of the papers around this. A 2024 paper by Danielson, Prime and Larter found that the cancers that are most common in teenagers and young adults are different from the cancers that are common in children and older adults. Their survival rates for the same cancers can differ. This shows how incredibly difficult it is to tackle this issue. Crucially, the Teenage Cancer Trust reports that cancer treatments can be less effective for young people, as there is less research and fewer clinical trials for this age group.
The range of rare cancers—my noble friend Lord Blencathra said that there are more than 200—is vast. There are blood cancers, cancers of the female reproductive organs, head and neck cancers, pancreatic cancers, brain cancers and many more besides. That shows what a complex and challenging problem this is, but it should not be an excuse for inaction. As all noble Lords have said, the call for action is now.
By introducing this Bill, the noble Baroness, Lady Elliott, is shining a light on an issue that too often receives insufficient attention. She is proposing a measured, thoughtful and practical set of steps to make medical progress. Quite often, at the Dispatch Box, whether in government or opposition, we hear about government aspirations rather than firm steps, but this is a very practical proposal to the Government.
In discussing progress, we should acknowledge the extraordinary work of all those campaigners and charities who play their role in different ways, with some funding research, some advocating, and some supporting families and loved ones, as the noble Baroness, Lady Morgan, acknowledged. I thank them for their engagement with the Bill but, more importantly, for their tireless efforts on behalf of those living with cancers.
Although we are supportive of the Bill, it would be helpful to understand the view both of the Government and of the noble Baroness, Lady Elliott, on a few issues. The first issue, raised by a number of noble Lords, is funding. Although the Bill places an important duty on the Secretary of State to promote research into rare cancers, it does not seek to ring-fence or guarantee specific funding. Could the Minister say a little about how the Government envisage this duty being reflected in future funding decisions, and how we ensure that rare cancers do not continue to lose out when resource is allocated? I should declare that we understand the challenge of trying to fund all this research. Of course, it would also be interesting to learn of the view of the noble Baroness, Lady Elliott.
Secondly, on clinical trials, one of the challenges that patients and clinicians frequently raise is simple. As my noble friend Lady Browning said, not all clinicians are aware of all relevant trials, particularly where those trials are highly specialised or geographically distant. Could the Minister share the current thinking of the department on what steps could be taken to improve awareness and signpost rare cancer trials, especially for clinicians and patients in rural or remote areas? Related to that, even where new treatments or trials are available, access is often concentrated in a small number of specialist centres. Could the Minister comment on the thinking in the department on ways to address these disparities in access, so that patients are not disadvantaged simply because of where they live?
Turning to the proposed review of the regulatory framework, could the timeframe be cut to less than three years, and what are the implications of doing that? Looking at the issue of medicinal products, on the three-year timeframe, do the Government or even the noble Baroness, Lady Elliott, have any views on whether the period of three years could be shortened, given the urgency that many noble Lord have raised? Also, would the proposed review include consideration of NICE’s pricing and appraising processes, and will it consider wider societal impact, as we debated last week? Many stakeholders have highlighted the difficulty of balancing affordability with price points while supporting innovation in rare cancers. It would be really helpful to understand those points.
Finally, although the Bill rightly focuses on rare cancers, many of the issues it seeks to address, such as delayed diagnosis, limited research, small patient populations and a need for specialist care, also affect people living with other rare conditions. Could the Minister say a little about how the Government are thinking more broadly about rare diseases, and whether the lessons learned from this Bill might inform wider policy in this area? We also heard about a few other issues thrown in by noble Lords. One is timelines; another is the abolition of NHS England. I know this point was raised in the other place. What is the Government’s thinking on that issue?
The Bill is thoughtful and important, commands broad support across the House, and addresses an area of clear and long-standing need, but it does so in a careful and proportionate way. It reflects the voices and experiences of patients and families who too often feel overlooked, particularly those affected by rarer and less well understood cancers, which we should remember, despite the name, account for 47% of all cancers. This alone is an important and welcome development, and I commend the Bill’s sponsors for that. The questions I pose are not intended to delay; they are intended to be constructive, to understand how the Bill would operate in practice, how ambitions could be turned into reality, and how principles might inform and provoke wider thinking across government. I hope that my questions will be seen as constructive. Once again, I thank the noble Baroness, Lady Elliott, for her leadership on this Bill, and I look forward to working with her and supporting its progress through the remaining stages.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
My Lords, I am delighted to pledge the Government’s full support for this Bill. It is very much aligned with our commitments, it strengthens the research ecosystem and, most importantly—I agree with many comments today—it gives hope to patients and families affected by rare cancers. I am glad that the Bill has the support of the noble Lords, Lord Kamall and Lord Palmer, on behalf of their Benches.
I am most grateful to noble Lords for their points and proposals today. I will be reflecting on them after this debate with the Minister in this area, Ashley Dalton MP, and also Zubir Ahmed MP. I was very touched that so many Peers shared their personal experiences, whether their own or those of their loved ones. I feel that the Bill stands in tribute to the memory of so many, including the late Baronesses, Lady McDonagh and Lady Jowell. It also stands in tribute to the memory of so many who I believe have been brought into the Chamber today by the very touching words and reflections of so many noble Lords. I realise how difficult that is.
I congratulate my noble friend Lady Elliott on her tenacity and clarity in bringing forward this important Bill before the House. I associate myself with the thanks to the many campaigners and charities who have worked on this for so many years, and I know they will continue to do so. My noble friend Lady Morgan made that point particularly clearly. I say to the House, and particularly to the noble Lord, Lord Kamall, that the Government are quite clear that no patient should be left behind simply because their cancer is less common.
The national cancer plan is soon to be published— I heard what the noble Lord, Lord Polak, hopes will be in there, and he will not have to wait too long for it—and it will build on the progress of this Bill. They work very well together, because they both seek to improve outcomes for cancer patients across the country, including those with rare cancers. It is by fighting cancer on all fronts—prevention, diagnosis, treatment and research—that we will make that change.
Much has been said today, and rightly so, about a number of cancers, but I want to say a particular word on how little is currently known about the prevention, diagnosis and management of brain tumours. They remain one of the hardest cancers to treat, and we also know how crucial early diagnosis is for improving survival rates for all cancers, including brain tumours. That is why we have committed to an additional £6 billion capital investment on new diagnostic, elective and urgent care capacity. The noble Lord, Lord Patel, called for genome sequencing for brain tumours. I can say to him that the national cancer plan will include detail on how we ensure that patients have access to the latest treatments and technology, including genetic treatments.
Important points were raised by the noble Baroness, Lady Grey-Thompson, and the noble Lord, Lord O’Shaughnessy, among others, about how the £40 million commitment to NIHR funding for brain tumour research will be met. That commitment absolutely remains in place, but there is no upper limit to our funding of high-quality brain tumour research and we are committed to exceeding the £40 million target. I should also add that there is no limit to our funding of high-quality childhood cancer research.
Clinical research, rightly, is at the core of this Bill. It is one of the most powerful tools that we have. I believe that the Bill will complement the ambitions in our 10-year health plan and the forthcoming national cancer plan to embed that research across the NHS and give patients greater control. It will make it much easier for researchers to connect with patients with rare cancers and streamline the recruitment for clinical trials and will ensure our regulatory framework delivers for those who need it most.
The noble Lord, Lord O’Shaughnessy, and the noble Baronesses, Lady Finlay and Lady Browning, raised the database. The database is live across the UK; it is a UK-wide registry. I urge everyone to sign up to be part of research in order to connect with trials. The noble Baroness, Lady Browning, also asked about strengthening the orphan drug regulations. We must ensure that there is a detailed review before any decisions are made on the regulations.
I say to the noble Lord, Lord Polak, that we will ensure that we do all we can to improve how we use data for research and raise public awareness of consent. I certainly fully support the digitisation of advance consent, which he referred to.
It is key that we incentivise research and continue to support and develop cutting-edge research for rare cancers and other rare diseases through the NIHR. For example, in December, we launched a pioneering new brain tumour research consortium to accelerate research into new treatments through the NIHR, which is investing an initial £13.7 million, with significant further funding expected to be announced shortly. We are also ensuring the effective co-ordination of research from other funders and charities through the Office for Strategic Coordination of Health Research, which is chaired by the noble Lord, Lord Kakkar.
We published Transforming the UK clinical research system: August 2025 update outlining how we fully delivered against all the recommendations in the review conducted by the noble Lord, Lord O’Shaughnessy, who I thank for his work on commercial clinical trials. We will go still further to deliver on our 10-year health plan and cut clinical trial set-up times to under 150 days by March—a target driven by the Prime Minister. We are taking forward the most significant reform of clinical trials regulations in more than 20 years. We need a more efficient and adaptable regulatory framework, and that is what we will deliver.
Concerns were raised about timings of implementation and market authorisation of clinical trials. The timeframe in the Bill is a legal boundary, and we certainly expect to publish the report rather sooner. The noble Lord, Lord Mott, asked about the UK’s ranking for approving orphan drugs. The lessons learned from the review of the regulations will inform how we best approach the regulation of UK orphan medicines.
On the abolition of NHSE, work is under way on primary legislation. That will enable its functions, powers and responsibilities to transfer formally to the department. That will include responsibility for this Bill. I heard loud and clear from a number of noble Lords the wish to see a speciality lead for rare cancers in post and getting to work as soon as possible. I certainly agree on their importance. I heard what the noble Lord, Lord Blencathra, said, but this is the way we will go forward. We will ensure that that appointment is made as soon as possible.
As I said at the outset, many useful points have been made. They will be part of our consideration, but the main thing I want to say is how glad we are to fully support this Bill and how we will do all we can to help progress it. It reflects ambition and our support for the goal for the UK to be the global leader in clinical research, which noble Lords called for. This is about patients, particularly those facing rare cancers. They deserve and need greater choice, speed and opportunity to participate in vital studies. Every breakthrough is key because it means that we can maximise people’s access to the benefits. I thank my noble friend for bringing the Bill forward, all noble Lords who have contributed and all those who continue to champion its cause.
Lord Winston (Lab)
I apologise for keeping the House waiting a moment longer, but I want to ask the noble Baroness something very important. This has been a fantastic debate of a high standard, in the best interests of the House of Lords. There was a great focus on focused research on rare cancers, but does she agree that continued basic research on cell biology, embryology and a whole range of things about cell development, which has contributed so much to cancer research and to rare cancer research, is also important?
Baroness Merron (Lab)
As my noble friend said, this has been an extremely valuable, well-informed and moving debate. At present, we are focusing on rare cancers because of the nature of the Bill, but I absolutely take his point about the importance of work outside rare cancers and the overlap with that. I thank him for it.
Baroness Elliott of Whitburn Bay (Lab)
My Lords, I thank everyone who has taken part in this debate. It truly has shown this House at its best, with a combination of personal stories and incredible expertise on the subject—way beyond my level of knowledge. Everybody has played an important part in highlighting just how important this is. I particularly thank Members who have given personal stories, which are often very difficult and emotional to talk about. It not easy to do. I say that in particular to the noble Lord, Lord Patel, who has so recently been bereaved.
I also highlight the contribution from the noble Lord, Lord O’Shaughnessy, because when Lady Jowell made that most moving and, in the circumstances, uplifting of speeches, standing not far from where he is sitting now, I was one of the Members of the House of Commons who came and stood at the Bar for the entirety of her contribution. It was one of the few times I came to the Bar to listen to things in this Chamber, but it is one that I shall never forget. That positivity is in this Bill because it is about hope to change things for the better.
I also mention the contribution from the noble Lord, Lord Mendelsohn, who mentioned our friend Phil Woolas. I had the privilege of serving with him in the House of Commons for a short time, but I knew him long before that. We wish him, his wife Tracey, their entire family and his close friends well, as he battles the terrible situation he is in.
The key message coming out of this Bill is the hope that it will give to people who are diagnosed with rare cancers and to their families and friends. At the moment, there is little hope for those people. I thank Dr Scott Arthur again, his staff and the charities that have got us to this point. We should leave here today with the hope that the Bill can really change things for the better.