Rare Cancers Bill

Debate between Scott Arthur and Christopher Chope

Report stage
Friday 11th July 2025 Commons Chamber

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

I rise to oppose the amendments, but I thank the hon. Member for Christchurch (Sir Christopher Chope) for tabling them, for engaging with the Bill and for our conversation yesterday, which I really appreciated. I understand the stated intent of the proposals, although I am not minded to support them.

Over the last 10 months, I have held dozens of meetings with families, survivors, sufferers, charities, clinicians and legal experts, all with the aim of delivering meaningful change in this field. Those meetings were not so that I could tell people about the Bill, but so that those people could shape the Bill. I fear that if we were to pass these amendments, they would upset the delicate balance of hopes and aspirations that underpins the Bill. It is not just about the Minister, as the hon. Member suggested; there is a whole coalition of people who have different opinions about the Bill, and I do not think any one person has a right to change it in that way, including me. That would be hugely disrespectful and a disappointment to that coalition, but I understand the hon. Member’s points.

The Minister will go through the amendments in turn, so I will focus on three key ones. The review of orphan drugs was one of the hardest-fought things in the negotiations with the Department and charities, but we found a point that we could all agree on. I appreciate that the hon. Member wants it to go further, and perhaps we could speculate about the outcome and better prepare for it, but it is much awaited by the charities and they are grateful for it. I do not want to speak on their behalf, but that is what I have heard from them. That covers amendments 1 and 2.

Amendment 5 is about the definition of a rare cancer, which is an aspect of the Bill that I have not spoken about in any great detail, so it is worth touching on here. The Bill sets the definition of a rare cancer in statute and aligns it with the definition of a rare disease, which is a useful simplification. In future, let us hope that some conditions fall out of that “rare” specification and need less emphasis, and let us also hope that people in the Department look at the treatments that are being developed inside and outside the UK. It is right that there should be a bit of flexibility at the edges of what the Department considers a rare cancer.

The timeline of the review is three years. Again, we spent a great deal of time talking about that. For some while, it was going to be much longer than three years, and all of us want it to be much shorter, but that was the compromise we reached—it was like “Goldilocks and the Three Bears”. We reached that compromise together, so I urge the hon. Member to respect our negotiations on that issue.

[Sir Christopher Chope]

I hear what the hon. Member is saying, but why does the impact assessment say that the costs are for staff for only one year? If the review will take three years, why are the staff funded for only one?

[Dr Arthur]

I thank the hon. Member for that question. Of course, the review will not start on day one after passing the Bill. It will take time to get up and running. The existing workload of those staff members will have to be reallocated, and I hope and expect there to be some initial engagement with the sector—both charities and pharmaceutical companies—so a bit of flexibility is required. To be honest, I would love more money to be spent on that review so that we can get more depth and it can have a greater impact. I am sure other hon. Members present would agree.

I hope the hon. Member for Christchurch understands my position and recognises the strength of cross-party and sector-wide support that has brought the Bill this far. I regret not inviting him to take part in the Bill Committee—we would have benefited from some of these comments at that stage—but some of the points that have been raised were discussed in Committee. It was a reasonably long discussion; it did not last for hours, but it was not as short as some. I remain committed to working constructively with colleagues as the Bill progresses beyond today—let us hope it gets beyond today—but I respectfully ask, in the strongest possible terms, that these amendments are not pressed. If they are, I hope Members will oppose them.

Rare Cancers Bill

Debate between Scott Arthur and Christopher Chope

2nd reading
Friday 14th March 2025 Commons Chamber

[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.