Rare Cancers Bill

Scott Arthur Excerpts

Friday 11th July 2025 Commons Chamber

Madam Deputy Speaker, that is a succinct summary of the points I am making and why I tabled those amendments. One or two people—out of ignorance, frankly—have written to me suggesting that I have something other than their best interests at heart. I do have their best interests at heart, which I why I am putting forward these amendments. I hope I will get a positive response from the Government.

[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.

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[Dr Arthur]

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

What a joy it is to say that! Madam Deputy Speaker, it has been 10 months since you pulled my little ping-pong ball out of the goldfish bowl and I started this journey. It is worth remembering that part of the reason behind this Bill was the death of my father-in-law to a rare cancer type called glioblastoma. I am forever grateful to my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for the information she gave me about that condition and how it impacts so many people, because I had always just been focused on my father-in-law.

When the ping-pong ball was pulled out of the goldfish bowl, I got so many emails, many of which were about glioblastoma. The reality is that someone who was diagnosed that day with glioblastoma would more than likely be dead by now—that is how serious the condition is. They would face treatments that were out of date, and their future would be dominated by uncertainty. We should not forget why we are here: to change that reality for people and their families.

This Bill has resonated with many Members of this House and with many people in my constituency. On Second Reading, I shared the tragic stories of a young constituent called Tilly, who passed away from neuroblastoma, and Kira, who has lived with the same condition for a decade—half of her life. I am proud to wear the Solving Kids’ Cancer badge, which Kira’s mother Aud gave me when I last met her.

Today, I also want to acknowledge the many people from across the UK—not just voters in Edinburgh South West—who have contacted me to voice their support and share their stories. One lady travelled quite far to meet me at my constituency surgery in July in Tesco in Colinton Mains. Her daughter was diagnosed with a sarcoma. In Tesco, next to the bleeping self-checkout aisles, she told me about the uncertainty she had faced after that diagnosis and how she had found it impossible even to understand which trials were available, let alone access them. I could see that she had felt powerless and had lost hope. The other reason she was in Edinburgh—perhaps the most important reason—was that she was meeting her ex-husband to scatter her daughter’s ashes in a local park. What is happening to people who face these conditions is quite incredible, so it is right that we seek to address them.

It has been incredible to hear these stories, and when I reflect on them, I can see that there are three recurring themes. The first is frustration. As things stand, our NHS is ill equipped to deal with these patients. Awareness levels are often low among clinicians, which leads to the scourge of late diagnosis. I know that will be addressed in the cancer plan. Families and patients are also frustrated by the limited access to cutting-edge trials—I have already given an example of that. As a result, many rare cancer patients understandably feel like they have to battle not just against the cancer but for attention.

The second key thing that unites these stories is perseverance. Rare cancer patients continually push back and advocate for the changes that they believe must happen—often fundraising or even setting up and running their own charities to help to achieve those goals. Thirdly, each and every story concludes with an offer of help. Rather than asking what I can do for them, because often rare cancer patients know that their options are limited, they want to know what they can do to help with the Bill, help others with the same condition, and help to make this legislation a reality. I believe that is a testament to the transformational role that the Bill could have, and I thank Members who have already made that point.

For far too long, rare cancer patients have been left behind—as medical science makes significant progress in many other complex fields, we have not seen enough progress in this one—but they feel this piece of legislation could mark a meaningful shift for many and turn out to be life-altering, perhaps even lifesaving, for some. There is one statistic that I often mention: rare cancers are not really rare, as they account for 47% of all cancer diagnoses in the UK each year. That equates to 180,000 people. If you are one of those 47%, two things are true: you are more likely to face outdated treatments and you are more likely to die.

The Bill is about justice and creating a more level playing field for those patients and their families. It will achieve that by placing a duty on the Secretary of State to promote research into rare cancers, including appointing a national specialty lead to co-ordinate efforts across the sector. If anybody doubts the need for that, I am sure my hon. Friend the Member for Mitcham and Morden can talk about what has been happening in recent years. The Bill will also increase patient access to clinical trials by strengthening and streamlining the Be Part of Research registry and building a central database of willing patients to help researchers to find trial participants more easily. That is key to attracting trials to the UK.

Lastly, the Bill will trigger a Government review into orphan drugs—I really dislike that phrase; this is about rare conditions—to explore new pathways to incentivise pharmaceutical companies to trial repurposed and innovative treatments for rare cancers. Together, those steps will reduce the barriers to research and attract more trials to the UK, and ultimately lead to faster and fairer access to lifesaving treatments.

I am a humble person, and do not want to be accused of overstating the impact of the Bill, so I will take the liberty of quoting others, if Members do not mind. The Brain Tumour Charity, which has been so helpful, says that the Bill will be transformative and help to

“improve access to clinical trials for people living with rare and less common cancers”.

Another helpful charity, Brain Tumour Research, said that the Bill

“could significantly improve research and treatment pathways for patients.”

Pancreatic Cancer UK, which has been at the core of what we are doing—and, it turns out, has been in correspondence with the hon. Member for Christchurch (Sir Christopher Chope)—says that if the Bill

“becomes law, it has the potential to improve survival rates for pancreatic cancer and other cancers that have been left behind.”

I know the hon. Member for Witney (Charlie Maynard) wanted to be here today but could not be. Instead, his sister Georgie left a message on my social media. She lives with glioblastoma and is a fantastic campaigner in this field. She said:

“Your Bill will make a significant difference, helping tens of thousands who desperately need more research to find a cure.”

No pressure, therefore, for me or us in the Chamber today.

There is also a strong economic argument for introducing this legislation. By creating the conditions for more rare cancer trials to take place in the UK, we can attract investment, stimulate innovation and create new jobs in research, science and healthcare. This is an opportunity to give British science and institutions a global leadership role in tackling some of the most challenging diseases of our time.

I recently had the pleasure of visiting Edinburgh University researchers based in an NHS hospital, the Western general in Edinburgh. I was invited along to see a thing called a robotic microscope. It sounded exciting, and I was looking forward to getting my picture taken next to it, but it is actually a very ordinary piece of instrumentation. I got my picture taken in the end, but I do not think I used it.

It is a fantastic piece of equipment, and it is coupled with a supercomputer. It does what would previously have been a lifetime of analysis in just a few days. It is fantastic that in this House, we have all agreed that Edinburgh University should get a new supercomputer. Analysis that used to take a few days will take just a few hours, moving us closer to finding cures. The United States has shown how investment in this area can stimulate growth through its cancers Act. It would offer a real step change in the UK if we could do the same.

I will draw to a conclusion, because I know others want to speak. There is a strong moral and economic argument for this Bill, and the progress within it is long overdue.

--- Later in debate ---

[Dr Arthur]

With the leave of the House, I thank you, Madam Deputy Speaker, and hon. Members who have contributed to the debate. I will not thank them all as I want to keep an eye on the time, but I will single out my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for helping me to start out on this journey. When I first met her, I thought she was driven by grief at the loss of her sister, but I now know that she is driven by her love for her sister. That is an important difference. I also thank the many people who used the debate to celebrate the life of Dr Susan Michaelis and who continue to support the lobular moonshot project that she left behind. We wish them well. I am sure that we will keep her family in our minds today.

I thank the DHSC civil servants, some of whom are with us today, for their support throughout the Bill’s passage. I must also pay tribute to the Minister for his support, as well as the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for West Lancashire (Ashley Dalton)—we all know who she is—for the comprehensive backing that she has provided throughout. I was at an event on Monday with both the pharmaceutical industry and some of the charities supporting the Bill, and they all have huge respect for the work she is doing.

I really thank the hon. Member for Hinckley and Bosworth (Dr Evans) for his supportive comments on behalf of the Opposition, which went well beyond what I thought was reasonable. [Interruption.] I was trying to phrase that in the proper way. I also thank my hon. Friend the Member for Bury South (Christian Wakeford) for whipping us all on these Friday mornings and helping us along the way—just as he enters the Chamber.

I must also thank the many charities who have been at the centre of this process. There are somewhere between 30 and 40 of them, and I mentioned the key ones earlier. Many hon. Members said—quite politely—that they had received quite a lot of emails over the last few days, perhaps stimulated by the submission of amendments to the Bill. I think that the charities sent about 120,000 emails this week, which is incredible. As hon. Members can imagine, my inbox is a bit of a mess just now, but that tells us how important the Bill is for them. They have waited a long time for this opportunity, and I really thank them for urging me along.

I must also thank Sonia from H/Advisors Cicero for her help in recent weeks as we approached Committee and as we have started to think about the transition to the Lords with some optimism. She and her husband Dan have been fantastic. I must also thank my team in my office for the support they have given me. I thank in particular Noel and Tommy but also Lucie, Hannah, Salim, Maisie, Joe, Xavier and Evie—that is quite a long list of names because we have a slightly complicated situation with our interns just now.

I look forward to the Bill’s continued support. I hope that it will pass today. As has been outlined, when it—hopefully—reaches the House of Lords, it will be in the safe hands of a formidable woman; I have great confidence in her.

First and foremost, I thank residents in Edinburgh South West for electing me and giving me the chance to bring the Bill forward. I did not know it at the time, but without their electing me, I would not be standing here to champion the Bill. I look forward to it receiving support today and to continuing to champion it as it moves to the other place.

Question put and agreed to.

Bill accordingly read the Third time and passed.