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.
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 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.
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.
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—
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.
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.
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.
20 of 55 shown
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.
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.
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.
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.
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?
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.
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.