Rare Cancers Bill

Scott Arthur Excerpts

Friday 14th March 2025 Commons Chamber

[Dr Scott Arthur (Edinburgh South West) (Lab)]

I beg to move, That the Bill be now read a Second time.

We all know someone who has suffered from a rare cancer—a brain tumour, childhood cancer, pancreatic cancer, liver cancer, or one of the other cancers on a long list that are unfortunately all too familiar. Each of them may statistically be considered rare, but collectively they are anything but rare. Blood Cancer UK states that rare and less common cancers account for 47% of all UK cancer diagnoses—a staggering 180,000 a year. The irony of the Bill’s title is that so-called rare cancers are not rare. Common cancers deserve attention, but so too do rare cancers.

I want to share an example of a family in my constituency who were confronted with a rare cancer. Tilly’s first symptoms were leg pains and loss of appetite. This was in September 2021, when face-to-face GP consultations were not possible. On visiting A&E, she was given ibuprofen. It was thought that she might have a virus. Six weeks later, she returned to A&E and was transferred to the cancer ward, where she was diagnosed with stage 4 neuroblastoma. On diagnosis, she was given a 50% chance of survival. Despite undergoing over a dozen rounds of chemotherapy and an operation, she sadly passed away about a year after her first symptoms appeared. Tilly was just four years old. Her father Jonathan, a headteacher in my constituency, is in the Gallery. He reached out to me after reading about the Bill. He explained his frustration that the development of new treatments for neuroblastoma has been moving at a glacial pace for too long. The same is true for many other rare cancers. This slow pace of change is not respected by these cancers, and it meant that Tilly missed her seventh birthday yesterday.

I thank Jonathan for sharing Tilly’s story, and wish him all the best as he moves to Northern Ireland with Tilly’s mum and big sister Emily to start a new job. I thank Livingston’s Team Jak for their ongoing support for Tilly’s family and many others. Neither Jonathan nor I want to suggest that the Bill would have saved Tilly, but we hope that it will improve survival rates for others, and take them beyond the 50% rate given to Tilly. That is why Jonathan is here today, and why I am here today.

Nobody told me that the most amazing thing about being an MP would be the people we meet almost daily, who want to make their community, our country or even the world a better place. That is particularly true of the people I have been humbled to meet on my journey to speaking about the Bill today, including cancer patients, survivors, the bereaved and campaigners, all of whom want just one thing: justice. Although the healthcare system in the UK is founded on the notion of equality, fairness and justice, they believe that rare cancer patients are being overlooked. Their demand for justice covers three points.

The first is that beating a rare cancer should not be less likely than beating other cancers. I have said that 47% of all UK cancer diagnoses each year are of rare and less common types. These patients already have the cards stacked against them, as they are 17% less likely to survive—an injustice caused by the relative lack of research and development in this field over many years.

Secondly, having a rare cancer should not mean being less likely to benefit from a medical breakthrough. According to Cancer52, in 2024, an astonishing 82% of patients with rare and less common cancers were not offered a clinical trial, and so were denied access to potentially lifesaving treatments. Often that is because such trials do not even exist, because there has been so little progress, and when they do exist, they are not always easy for patients to access.

Let me give an example: there is a remarkable young woman in my constituency known as Kira the Machine. Kira has been living with neuroblastoma since she was 10. She has been through it all: a prognosis of inoperability, 26 rounds of chemotherapy and eight relapses. Her and her mum, Aud, are fundraising legends locally. I do not know a school or workplace in Edinburgh that did not help when they were given just three weeks to raise £500,000 for lifesaving specialist treatment in the USA. Now 21 and fundraising for other cancer sufferers, Kira is an example to us all. She owes her life to a lung cancer drug not typically provided to treat neuroblastoma and not yet generally available in the UK for that purpose, although I understand that Solving Kids’ Cancer is working on that.

Kira appears on my social media so much, and is really well known in Edinburgh because of the fantastic campaign that she and her mum ran. She is a bit of a celebrity, if I can use that word. She came into my office recently to talk about the Bill. It was really humbling to meet her, and because she has that celebrity status, in my mind, I was also quite starstruck; I told her that it was like Taylor Swift entering my office. I resisted the temptation to exchange friendship bracelets with her, but she gave me a Solving Kids’ Cancer badge, which I am proud to wear today.

Kira’s story is important because it reminds us that repurposing existing drugs can unlock great benefits, but those benefits can be delivered at scale only through additional medical research efforts and clinical trials.

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

The NHS has a drug repurposing office. To date, it has repurposed one drug, and that was for breast cancer. Does my hon. Friend think that is good enough?

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[Dr Arthur]

I welcome that intervention; I think that was a leading question. Of course it is not good enough. I do not think that anybody here thinks that it is good enough, including the Minister. Unfortunately, at present there are very few clinical trials in this country for rare cancer treatments. Families such as Kira’s should not need to crowdfund for treatment overseas; we should be building the capacity here in the UK.

Thirdly, having a rare cancer should not mean that a diagnosis is delayed when compared with diagnoses of other cancers. Rare cancer sufferers tell me that their symptoms are often less likely to be recognised, as doctors are less familiar with them.

[Mrs Emma Lewell-Buck (South Shields) (Lab)]

I thank my hon. Friend for the powerful way he is introducing his Bill. My constituent Steph is just 29 years old and is a mam to two little girls. She was diagnosed with grade 4 glioblastoma, known as astrocytoma, on her birthday last year. For months prior to her diagnosis, she was treated for migraines by her GP. Steph knew that she was not suffering from migraines, yet she was rudely dismissed by an A&E doctor, and felt nobody was listening to her. Steph has since had brain surgery, radiotherapy and chemotherapy. My hon. Friend knows that early diagnosis and treatment is vital. Can he assure Steph and her family, and me, that the Bill will help to raise awareness across the medical profession of rare brain cancers?

[Dr Arthur]

Absolutely. Last week, I attended a reception for the Eve Appeal. I was really struck by the fact that early diagnosis was a big feature of what the charity was talking about, and I will come on to that in just a second.

As a consequence of the lack of recognition of the symptoms of rare cancers, too many people are diagnosed too late. Last week, at an event hosted by the Brain Tumour Charity, I met Gabrielle and her wife and children. Gabrielle told me how the neurologist to whom she was initially referred did not recognise her brain tumour symptoms, and told her instead to go home, breathe into a paper bag and get some counselling. If only curing brain tumours was so easy. Reflecting on the comment made by my hon. Friend the Member for South Shields (Mrs Lewell-Buck), an observation that I have made on this journey is that so many of the people who have talked about late diagnosis have been women. That is purely anecdotal, but it seems to be the case. When I was at the Eve Appeal reception, the point was made that so many women are turned away; the GP tells them that they are hormonal, premenstrual or premenopausal.

[Jenny Riddell-Carpenter (Suffolk Coastal) (Lab)]

My hon. Friend is making an incredibly important point, with which many across the Chamber will agree. The statistics are particularly stark for women from black, Asian and minority ethnic backgrounds; they are even more likely to be dismissed.

[Dr Arthur]

I thank my hon. Friend and office neighbour for making that point, which was also made by Eve Appeal. I cannot remember the statistics, but there is a stark difference. I talked about this issue when I met the Minister yesterday and she gently pointed out to me that it is not just in healthcare where women are dismissed as hormonal, premenstrual and so on. I thanked her for reminding me of that in the gentlest possible way.

It is a cruel irony that rare cancers such as Gabrielle’s tumour are typically less survivable, making early diagnosis even more important. Rare cancer patients require early, not later, diagnosis. I have spoken about poor outcomes, lack of progress in developing treatments and late diagnosis. My Bill focuses on the first two points, but I want to acknowledge the need to improve diagnosis, because of comments that have already been made. I am sure that will feature in the cancer plan.

I am the first to admit that, when I was successful in the private Member’s Bill ballot, I found it daunting as a new MP. I thought I had some really good ideas for a Bill, but as soon as my ping-pong ball was picked from the goldfish bowl, I was inundated with calls from constituents, charities and lobbyists, each telling me that their cause was better than any I could think of. I considered many worthwhile causes over the following days, but while having a coffee in Colinton Mains Tesco in Edinburgh South West, I received emails from members of the public who support the campaign of my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh). Just last week I met Oriana, one of the people who emailed me. It was incredibly moving to meet her; it took me right back to the start of this journey. I posted on my Facebook page about meeting her, and straight away somebody said that they knew her and that she had helped them when their family had been faced with glioblastoma. That is a reminder that so many people affected by these conditions turn their loss into something really positive and help other people.

My hon. Friend’s campaign relates to glioblastoma, a type of tumour that took my father-in-law. I felt that the stars had aligned for me. I really do mean that; I really did get that feeling. I want to pay tribute to my hon. Friend. [Hon. Members: “Hear, hear.”] More, more! I know her to be a formidable woman who in this context is driven by glioblastoma taking her sister, Margaret. I did not know her sister at all, which is my loss, but I do know that she shaped my party and she helped change our country for the better, and I know above all that she was loved by her sister.

Glioblastoma is typical of so many rare cancers, and it started me on this journey so I want to talk about it further. My father-in-law, Ivor Hutchison, was a dignified man but glioblastoma did not respect that. He was a technical teacher at Bell Baxter high school in Fife. He was married to Sylvia and they have four daughters, Denise, Iona, my lovely wife Audrey who is in the Gallery —I have just embarrassed her—and Sarah. In time, Ivor and Sylvia had grandchildren: Andrew, our daughter Ruth, Hannah, Matthew, our son Ben, Rory and Sophie. Ivor was not a passive grandfather; he worked hard to ensure his grandchildren flourished.

In September 2017, Ivor began having problems with his speech. My wife Audrey, an NHS nurse, was concerned that it might be a sign of dementia. We all hoped that that was not the case. Following an MRI scan in the November, we received the devastating news that Ivor had glioblastoma. At Christmas he was still very much himself and enjoyed the festivities. Ivor never had a pound of fat on him, but when it came to Christmas time he really did hoover up the food and enjoyed the Christmas meal. It was great to see him that Christmas, but we did feel that it would be his last. Once we entered the new year, he began to lose his mobility, and eventually he was admitted to Adamson hospital in Cupar. In 2018, surrounded by his wife and daughters, Ivor died peacefully, eight months after his first symptoms. He had a good life and his daughters are a fantastic legacy to him, as well as all the pupils he taught at school.

However, as a physically fit man, Ivor should have lived longer: he should have lived to see his birthday last weekend, and if he had done so, he would not have missed two of his grandchildren getting married and his first great-grandchild, Fraya, being born in December last year. I assumed that he had been unlucky with glioblastoma. It was not until I met my hon. Friend the Member for Mitcham and Morden that I learned that only 25% of glioblastoma patients live beyond 12 months after diagnosis, and only one in 20 survive beyond five years. Despite that awful prognosis, as for other rare cancers, the drugs to treat glioblastoma have not changed in decades. That is why I knew in my heart that I needed to introduce a Bill that would help equip those working hard to fight against glioblastoma, and all rare cancers, with the tools they need to further their efforts and, ultimately, save lives.

Over the past 15 years, thanks to the dedicated work of charities, survivors and researchers, we have seen a 10% rise in survival rates for those diagnosed with cancer. Globally, new treatments are being developed and rolled out to patients, improving outcomes and saving lives in our NHS every single day. However, rare cancer patients are being left behind, and I need to explain why. It is not due to a lack of effort by charities or those affected by the disease. In fact, in the Gallery today are members of some incredible charities who are fighting against rare cancers in what is often an uphill battle. I thank them for their hard work in helping me to develop the Bill—they really have helped me—which aims to address the injustices faced by rare cancer patients and their families. For all the people I have met from the charities, their work is much more than a job for them; it is about making a difference to people’s lives, improving survivability and supporting families.

The reason for the uphill battle is that research into rare cancer is much less appealing to pharmaceutical companies when compared with more common conditions. With smaller patient populations, there is an increased logistical challenge in bringing patients together. Currently, we are lacking a sufficient development strategy and there is no single source of patient data, meaning companies must undertake the costly endeavour of finding patients and verifying eligibility. Even if they succeed in running a clinical trial and a drug proves to be an effective treatment, companies face the challenge of selling a drug developed at great expense to a small market. Ultimately, these companies exist to return a profit for their shareholders. Given a choice between investment in potential treatment for a rare cancer or a more a common one, too often rare cancer patients lose out.

Having set out the challenges faced by those diagnosed with rare cancers, let me now address what the Bill aims to accomplish. I will list four key measures and explain their impact: appointing a named responsible lead for the delivery of rare cancer research; creating a single registry of rare cancer trials; creating a single registry of rare cancer patients available for trials; and defining an evidence base for repurposing new cancer treatments. Let me explain in turn why these are important.

First, the Bill would place a duty on the Secretary of State to facilitate and promote research related to rare cancer patients. The appointment of a national specialty lead for rare cancers in the National Institute of Health and Care Research would provide the Secretary of State with advice on the design and planning of research to facilitate collaboration between relevant parties. That will ensure co-ordination and accountability for the delivery of new cancer research in the UK.

Secondly, the Bill would increase access to clinical trials via a service tailored to rare cancer patients. Through the Secretary of State’s new duties, that would be accomplished as part of the existing “Be Part of Research” registry, ensuring that all trials are registered in a single place.

Thirdly, charities and clinicians tell me that more trials would be attracted to the UK if we had easier access to patient cohorts. Establishing a single database of willing patients would remove a significant burden on researchers in finding and verifying eligible people for clinical trials.

[Sir Christopher Chope (Christchurch) (Con)]

I congratulate the hon. Gentleman on introducing a Bill on this important subject. He mentions research. Can he explain why the extent of clauses 2 and 3 is limited to England and Wales? What is happening in Scotland in relation to the research issues?

[Dr Arthur]

The challenge is devolution. I am a huge fan of devolution, but often the UK is at its best when it works together, particularly on healthcare. I hope that in time we will see progress and the nations will work together. I do not want to overstate this, but there have been discussions across the UK about how we could work together on the issue, so perhaps the answer is, “Watch this space.”

The Bill’s fourth measure is to trigger a review by the Government of the orphan drug regulations, to examine how they can be reformed to better incentivise pharmaceutical companies to invest in clinical trials for rare cancers. Specifically, it will consider how incentives could be provided to pharmaceutical companies to trial the repurposing of new cancer treatments. We often hear about how drug development for one cancer can be used to defeat another; that is what Kira relies on right now. My Bill aims to build a foundation for industrialising that approach via incentives. The EU has a similar system for incentivising the testing of drugs for paediatric use that have already been approved for adult use, so the approach has been tried and tested.

Together, these measures will ensure that we have leadership in Government and will remove the barriers to running new clinical trials that researchers and pharmaceutical companies face.

[Joe Powell (Kensington and Bayswater) (Lab)]

I thank my hon. Friend for the powerful way in which he is introducing the Bill. Will he recognise the work of pioneering teams such as the one at Charing Cross hospital, under Imperial College healthcare NHS trust, where Professor Michael Seckl is leading the way in groundbreaking treatment for and research on gestational trophoblastic disease and germ cell tumours? Does he agree that those centres need support to expand and share their research findings with the rest of the NHS?

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[Dr Arthur]

Absolutely. There is fantastic expertise in our universities across the UK; as I say that, I have to refer hon. Members to my registered interests because of my connections with the university sector. There is much more that we can do to attract the best researchers to the UK and build capacity in UK universities.

The Bill will provide greater accountability for the delivery of new research, but please do not just take my word for it. Brain Tumour Research has described it as

“essential for a brain tumour cure”.

I did not feel any pressure at all when I read that quote! No, it was quite daunting, to be honest. The Less Survivable Cancers Taskforce says that the Bill

“could be a truly transformative moment in the UK’s approach to research for rare and less common cancers.”

My friends at the Brain Tumour Charity say that the Bill

“is a framework for tangible, impactful change.”

At this point, I have to mention my daughter’s connection with the Brain Tumour Charity. She is running a marathon in May to raise funding for it, and I wish her well. [Hon. Members: “Hear, hear.”] Thank you.

Let me list some of the other groups that support the Bill. They include Pancreatic Cancer UK, which has been absolutely fantastic in its support for what we are doing; Cancer52, an organisation that represents more than 100 groups; the Angel Mums; the Grace Kelly Childhood Cancer Trust; and the Inflammatory Breast Cancer Network UK. Inflammatory breast cancer accounts for 2% of breast cancer diagnoses in the UK each year, but 10% of the deaths.

The Bill is also supported by Target Ovarian Cancer, Brainstrust, AMMF—the Cholangiocarcinoma Charity, the Urology Foundation, the Tessa Jowell Brain Cancer Mission, Action Kidney Cancer and Sarcoma UK, which I met this week. I have a friend with that cancer, and it is a fantastic organisation that I hope to work more with in the future.

It is supported by Maggie’s, Shine Cancer Support, Solving Kids’ Cancer, the British Liver Trust, Blood Cancer UK, Radiotherapy UK, Leukaemia UK, CCLG—the Children and Young People’s Cancer Association, CLL Support, Neuroblastoma UK, Salivary Gland Cancer UK, Neuroendocrine Cancer UK, Melanoma Focus, Myeloma UK, Hope For Tomorrow, Alike, Yorkshire Cancer Research, Young Lives vs Cancer, the Tessa Jowell Foundation, the UK Mastocytosis Support Group, the Bone Cancer Research Trust, the Neurosciences Foundation and the Eve Appeal.

The Eve Appeal had a fantastic reception last week, and when I went along to it, having its support felt like a real tipping point in the progress we are making in building support for the Bill. It was great to see the Minister as well, and I have to say—this is not a trivial point—that the cake there was absolutely fantastic. I do not doubt that when I get back to my office and check my emails, more organisations will have got in touch to say that they want to support what we are doing today.

I know that many Members in the Chamber today will have deeply personal stories to tell, on their own behalf and on behalf of their constituents. I look forward to hearing those testimonies as we debate this Bill, because it is so important to give those people a voice. I will conclude by saying that the Bill we are debating today has a real chance of making a difference. For too long, rare cancer patients have been left on the sidelines without significant advancement—this cannot go on. Tilly and Ivor deserved a better chance of beating the cancer inside them, and those who are yet to be diagnosed deserve a better chance of a full life. Let us pass this Bill today and work across the UK to take the fight to rare cancers and save lives. I commend this Bill to the House.

[Several hon. Members rose—]

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[Dr Arthur]

With the leave of the House, I would like to thank a few people. First and foremost, I thank the Minister for her speech. I met her yesterday, and she was filled with genuine passion, energy and excitement for this subject. It is great to see her come here today and use her power to support this Bill, and let us hope that it passes.

I thank the shadow Secretary of State, the right hon. Member for Melton and Syston (Edward Argar). Before this debate, people told me that he was respected across the House, and he has shown why. I must also thank my hon. Friend the Member for Crawley (Peter Lamb). People in the Gallery will not know this, but he has worked really effectively, right throughout the debate, to ensure that all the people who wanted to speak could do so. I thank him for that.

I thank the Whips and the Speaker’s Office for managing the debate sensitively, because this is quite a difficult subject, and I thank you, Madam Deputy Speaker, because it was you who pulled my ping-pong ball from the goldfish bowl. It was very skilfully done.

I wish I had time to thank everybody who spoke in the debate. Sadly, I do not, but they have my thanks and respect. They have done a great job of thanking each other as the debate has proceeded, so I thank them all. I will watch the debate again over the weekend, because it has been quite incredible and quite moving.

I thank our colleagues from the Department of Health and Social Care, who are in the officials’ box. They have been fantastic. Without them, this Bill would not have happened. Privately, there have been a few Sir Humphrey moments, but those from the Department have been absolutely fantastic, and that was very clear yesterday when I met the Minister.

I thank the charities that backed the Bill. They did not just back it; they helped get it to where it is. They were not just backing a finished product; they influenced and shaped it. I think that is why so many people are here to support it.

I thank the staff in the Public Bill Office for their patience and so much more, and I thank the staff in my office. I think Noel and Solomon are here today, but it is a team effort. Back in Edinburgh are Lucie, Salim, Xavier, Evie and Hannah. [Hon. Members: “Hear, hear.”] They deserve that.

In all the contributions today, we have heard evidence that people with a rare cancer diagnosis face great injustice, because their chances are so much slimmer and they face so much uncertainty. We have shown that we want change. We are not just being angry; we are using that anger to get even, which is really important. We talk in this Chamber, but often there is no action. Today we have talked and agreed, and hopefully there is going to be action.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

That was most definitely Parliament at its best.

Question put and agreed to.

Bill accordingly read a Second time; to stand committed to a Public Bill Committee (Standing Order No. 63).