Rare Cancers: A Bill of Hope and the Fight for Fair Treatment

This episode of 'The Bench Report' delves into the passionate and moving debate surrounding the Rare Cancers Bill, a crucial piece of legislation aiming to address the disparities faced by individuals diagnosed with less common cancers.

Discover why so-called "rare" cancers collectively account for nearly half of all cancer diagnoses and over half of cancer-related deaths, yet often receive disproportionately less attention and funding. 

We explore the key measures of the Bill and the overwhelming cross-party support for its potential to transform the lives of patients and their families, offering a beacon of hope in the face of devastating diseases like glioblastoma, pancreatic cancer, and rare childhood cancers.

Key Takeaways:

• "Rare" cancers are collectively common, representing a significant portion of all cancer diagnoses and deaths.
• Patients with rare cancers often face delayed diagnosis due to a lack of awareness and familiarity with their symptoms.
• There is a significant lack of research and development in rare cancer treatments compared to more common cancers, leading to poorer survival rates.
• Access to clinical trials is limited for rare cancer patients, with a large percentage not even being offered the opportunity to participate.
• The Rare Cancers Bill aims to appoint a national specialty lead for rare cancer research.
• The Bill proposes creating single registries for rare cancer trials and patients to improve accessibility and recruitment.
• A key aspect of the Bill is to review the orphan drug regulations to better incentivize pharmaceutical companies to invest in rare cancer treatments and drug repurposing.
• The debate highlighted the urgent need for action and a more revolutionary attitude towards tackling rare cancers.

Read the extended shownotes on Substack.

Source: Rare Cancers Bill (Hansard)

Transcript

SPEAKER_01: 0:00

Welcome to The Bench Report. You know, we always talk about those big topics that are being debated on the benches of the UK Parliament. We're really all about making politics you know, more accountable, more accessible. And we focus on issues that that really impact all of us.

SPEAKER_00: 0:19

Yeah, I think that's really key. You know, we often think about politics as this distant thing that doesn't really touch our everyday lives. But

SPEAKER_01: 0:25

it does. It does. At the end of the day, politics is everyone's business and it's affecting us all personally and professionally.

SPEAKER_00: 0:32

Absolutely. Couldn't agree more.

SPEAKER_01: 0:33

So for today's deep dive, we're going to look at something you sent to us. And it's the second reading of the rare cancers bill.

SPEAKER_00: 0:40

This is a really powerful bill.

SPEAKER_01: 0:42

It is. And the discussion in Parliament was incredibly moving. I mean, there were personal stories shared, you know, really underscored a need for some serious change in how we approach rare cancers.

SPEAKER_00: 0:53

Yeah, I think what really struck me when I was going through the source material was the sheer passion and the urgency in the MP's voices.

SPEAKER_01: 1:01

For sure. And in this deep dive, we're going to unpack all of that. We're going to look at the key arguments, the personal stories that were shared, and of course, the specific measures that are actually proposed in the bill itself.

SPEAKER_00: 1:15

Yeah, because at the end of the day, we need to understand what this bill could mean for patients and their family.

SPEAKER_01: 1:21

Right, exactly.

SPEAKER_00: 1:22

And one of the things that we're going to kind of pull apart is this idea of rare.

SPEAKER_01: 1:26

Right.

SPEAKER_00: 1:26

Because rare, as we'll see, can be a very misleading term.

SPEAKER_01: 1:30

Yeah. Like when you hear rare, you think, you know, one in a million.

SPEAKER_00: 1:33

Yeah.

SPEAKER_01: 1:34

But these cancers actually make up a pretty significant portion of all cancer diagnoses and even deaths here in the UK.

SPEAKER_00: 1:41

Exactly. So let's jump right in.

SPEAKER_01: 1:43

Okay. Let's get started.

SPEAKER_00: 1:44

Okay. So Dr. Scott Arthur, the labor MP for Edinburgh Southwest, he's the one who introduced this bill.

SPEAKER_01: 1:50

Okay.

SPEAKER_00: 1:50

And he actually highlighted this point about the misleading nature of rare.

SPEAKER_01: 1:54

Okay.

SPEAKER_00: 1:55

He said that rare and less common cancers account for four 47% of all UK cancer diagnoses. That's huge. Yeah. That's around 180,000 cases every single year. So while individually, yeah, these cancers might be statistically rare.

SPEAKER_01: 2:11

Yeah.

SPEAKER_00: 2:12

But collectively, they're anything but uncommon.

SPEAKER_01: 2:16

That's a really important distinction.

SPEAKER_00: 2:18

It is. It really is because it means that we can't treat this as a niche disease. Right. It's something that affects a huge swath of the population.

SPEAKER_01: 2:26

Right. Nearly half.

SPEAKER_00: 2:28

Exactly.

SPEAKER_01: 2:28

Of all cancer diagnoses.

SPEAKER_00: 2:30

Wow. So, you know, it makes you think, are we are we doing enough? Are we putting enough resources, enough focus on on this particular area?

SPEAKER_01: 2:38

And the debate, as I mentioned, there were so many personal stories that were shared by the MPs. I mean, Dr. Arthur actually started by sharing a really, really heartbreaking story.

SPEAKER_00: 2:47

Yeah. It was about a four-year-old girl named Tilly in his constituency.

SPEAKER_01: 2:51

Right.

SPEAKER_00: 2:51

Who tragically passed away from stage four neuroblastoma.

SPEAKER_01: 2:56

Ah.

SPEAKER_00: 2:56

And it was just a year after her first symptoms appeared. And she'd gone through extensive treatment. But... You know, what was particularly moving is that Tilly's father, Jonathan, was actually present in the gallery as Dr. Arthur was speaking.

SPEAKER_01: 3:09

Oh, my gosh.

SPEAKER_00: 3:10

And you could you could just feel the weight of that story. Yeah. And the impact it had on everyone present.

SPEAKER_01: 3:16

It must have been so impactful. And I know Dr. Arthur used the word glacial to describe the pace of new treatment development, which really, really just hits you. I mean, glacial when you're talking about about a child and this kind of diagnosis, it's just heartbreaking.

SPEAKER_00: 3:31

Yeah, it pains. It paints this picture of this slow, agonizing process where time is just slipping away.

SPEAKER_01: 3:40

And for families facing these rare and often aggressive cancers, time is absolutely critical. It's everything. It's everything. And so that's why it's so frustrating and it feels unjust when research and treatment development just isn't keeping pace.

SPEAKER_00: 3:55

Right. And that really feeds into this sense of urgency and injustice that permeated the entire debate. Because the MPs kept saying over and over again that having a rare cancer should not mean that you have a lower chance of survival.

SPEAKER_01: 4:10

Yeah.

SPEAKER_00: 4:10

It shouldn't mean that you have less access to these medical breakthroughs or delayed diagnoses. Right,

SPEAKER_01: 4:17

right.

SPEAKER_00: 4:17

So it really comes down to this fundamental principle of equity in health care. You know, like, why should the statistical rarity of a disease dictate the level of research attention it receives?

SPEAKER_01: 4:28

Yeah. I mean, you know, everybody deserves a chance.

SPEAKER_00: 4:32

Exactly.

SPEAKER_01: 4:32

And the same level of care. And when you look at survival rates and access to clinical trials, you know, we've got some stats that were shared by Dr. Arthur that were just, they were pretty shocking, actually. You know, I know he mentioned that patients with rare cancers are 17% less likely to survive.

SPEAKER_00: 4:46

Yeah.

SPEAKER_01: 4:47

Compared to those with more common cancers, which is, that's a big gap.

SPEAKER_00: 4:50

That's a significant gap.

SPEAKER_01: 4:52

Yeah, that is. That's huge.

SPEAKER_00: 4:53

And you know, it's not just because of the nature of the diseases themselves. Right. It's because there's historically been less research.

SPEAKER_01: 4:59

Yeah.

SPEAKER_00: 4:59

There's been less funding.

SPEAKER_01: 5:01

Right.

SPEAKER_00: 5:01

So the development of effective treatments has been slower.

SPEAKER_01: 5:05

So it's like this kind of negative spiral.

SPEAKER_00: 5:07

Exactly. Exactly. It feeds on itself. And then when you look at access to clinical trials. Which are often the most cutting edge, you know, when you're looking at new therapies, the situation's even worse.

SPEAKER_01: 5:19

Right.

SPEAKER_00: 5:19

There's data from Cancer 52. It's a collaborative group focused on rare and less common cancers. And they said that in 2024, 82% of patients with rare and less common cancers, they weren't even offered a clinical trial.

SPEAKER_01: 5:34

Oh, my God.

SPEAKER_00: 5:35

So they're being denied access to these potentially life-saving treatments.

SPEAKER_01: 5:38

Yeah. You know, the word denied is, it's kind of a harsh word.

SPEAKER_00: 5:41

It is. But, you know. And it is. It's the reality. Right, right. Right, right. benefited from a lung cancer drug, which is not typically used for neuroblastoma.

SPEAKER_01: 6:19

Right.

SPEAKER_00: 6:19

But it's played a vital role in her ongoing survival. So that's good news. It's amazing. It's a really powerful example. But then Dane Siobhan McDonough, she brought up a really valid point about how effective we are in pursuing these repurposing opportunities.

SPEAKER_01: 6:34

Okay.

SPEAKER_00: 6:35

She questioned the impact of the NHS Drug Repurposing Office.

SPEAKER_01: 6:38

Right.

SPEAKER_00: 6:39

Because she noted that it's only successfully repurposed one drug. And that was for breast cancer.

SPEAKER_01: 6:44

Okay.

SPEAKER_00: 6:45

So her point is, okay, this is a great idea.

SPEAKER_01: 6:47

Yeah.

SPEAKER_00: 6:48

But is the current infrastructure actually working efficiently enough?

SPEAKER_01: 6:52

Yeah. So it's like we have the idea, but not necessarily the follow through.

SPEAKER_00: 6:55

Exactly. To make sure

SPEAKER_01: 6:56

it's actually benefiting as many people as it could.

SPEAKER_00: 6:59

Yeah, exactly. Because there are potentially so many other patients out there.

SPEAKER_01: 7:02

Right.

SPEAKER_00: 7:02

Who could benefit from this approach. Right. But they're not.

SPEAKER_01: 7:06

And then we also saw the debate kind of shift to this issue of delayed diagnosis.

SPEAKER_00: 7:10

Yeah.

SPEAKER_01: 7:10

Which is something that really came up as a critical issue. And, you know, Mrs. Emma Lowell Buck shared a really concerning case from her constituency about Steph, a 29 year old who was ultimately diagnosed with grade four glioblastoma. Oh,

SPEAKER_00: 7:25

wow.

SPEAKER_01: 7:25

But it was only after months of being treated for migraines.

SPEAKER_00: 7:28

Right.

SPEAKER_01: 7:29

And so her concerns were initially dismissed. And this just highlights how this unfamiliarity with rare disease symptoms, it can lead to these really critical delays in diagnosis and ultimately in treatment.

SPEAKER_00: 7:42

Yeah. And, you know, it's a common theme, unfortunately.

SPEAKER_01: 7:45

Right. Because you go to the doctor and the doctor is trained to see the things that are most common.

SPEAKER_00: 7:49

Exactly.

SPEAKER_01: 7:50

And so if it's something rare, it's harder to pick up on.

SPEAKER_00: 7:54

And Jenny Riddell Carpenter, she actually added another really important point to this discussion, which is that women from black, Asian and minority ethnic backgrounds are even more more likely to have their health concerns dismissed.

SPEAKER_01: 8:09

Right.

SPEAKER_00: 8:09

So there's this added layer of inequality.

SPEAKER_01: 8:12

Right.

SPEAKER_00: 8:12

Which can make it even harder.

SPEAKER_01: 8:13

Yeah.

SPEAKER_00: 8:14

To get that timely diagnosis.

SPEAKER_01: 8:15

So not only do we need greater awareness of these symptoms among among the health care professionals, but we need to really make sure that we're addressing any biases. Right. That might be leading to these disparities and diagnosis and care.

SPEAKER_00: 8:28

Absolutely.

SPEAKER_01: 8:29

OK. And then the conversation shifted again, focusing on glioblastoma.

SPEAKER_00: 8:33

Yeah.

SPEAKER_01: 8:34

A rare and very aggressive cancer.

SPEAKER_00: 8:36

It's a devastating disease. It

SPEAKER_01: 8:38

is. It is. And Dr. Arthur actually shared a personal connection to this, recounting the experience of his father-in-law, Ivor Hutchison, who died from glioblastoma eight months after his first symptoms.

SPEAKER_00: 8:49

That's incredibly fast.

SPEAKER_01: 8:52

It is. It is. And he brought up that only 25% of patients actually live beyond 12 months post-diagnosis.

SPEAKER_00: 8:58

Right. And five-year survival rate is even lower.

SPEAKER_01: 9:01

It's very low. And despite these statistics, the drugs that are used to treat it haven't actually changed that much in decades.

SPEAKER_00: 9:08

Right, which is in stark contrast to other cancers where there have been huge leaps and bounds.

SPEAKER_01: 9:14

Exactly. So it really is this lack of options and just this feeling of hopelessness.

SPEAKER_00: 9:19

Yeah. And Monica Harding, she also shared her own family's experiences with glioblastoma, which were incredibly powerful.

SPEAKER_01: 9:28

Yeah.

SPEAKER_00: 9:28

She talked about her brother-in-law's diagnosis and the loss of her husband's best friend and his sister, both It's

SPEAKER_01: 9:36

hard to even imagine.

SPEAKER_00: 9:38

It is.

SPEAKER_01: 9:38

And she really emphasized how slow the progress has been compared to other cancers. And she mentioned that brain tumors, including glioblastoma, they only receive like a tiny amount of UK cancer funding.

SPEAKER_00: 9:50

Something like 1 to 2 percent.

SPEAKER_01: 9:51

1 to 2 percent.

SPEAKER_00: 9:52

Specifically for glioblastoma research.

SPEAKER_01: 9:54

I mean, that's just, that's appalling.

SPEAKER_00: 9:56

It's shocking, especially when you think about the... The severity of the disease. And she also brought up concerns about, you know, the government had actually pledged to double funding for brain tumor research a few years ago. Right. But she cited reports that said that a lot of that money still hasn't actually been allocated.

SPEAKER_01: 10:13

Wow.

SPEAKER_00: 10:14

Or spent.

SPEAKER_01: 10:15

So it's like it's like empty promises.

SPEAKER_00: 10:17

Yeah. It makes you really question, you know, the efficiency and the accountability of these research funding process. It does. It does. And it also begs the question. Are we really targeting the areas where the need is the greatest?

SPEAKER_01: 10:30

Yeah. I mean, that's a really important question.

SPEAKER_00: 10:33

It is.

SPEAKER_01: 10:34

And now we're going to talk about another key element of this bill, which is the pharmaceutical companies and those regulations surrounding orphan drugs.

SPEAKER_00: 10:43

Right. Right.

SPEAKER_01: 10:43

So maybe we can start by just kind of quickly explaining to our listeners what are orphan drug regulations?

SPEAKER_00: 10:49

Sure. Orphan drug regulations are a set of special rules and incentives that governments put in place to encourage pharmaceutical companies to develop medications for rare diseases. Because it's often not very profitable for them. Because the patient populations are small.

SPEAKER_01: 11:09

Yeah. So it makes sense. It's like, OK, how do we make this attractive for companies to actually do this work?

SPEAKER_00: 11:15

Exactly. So they might offer things like extended periods of market exclusivity.

SPEAKER_01: 11:19

Right.

SPEAKER_00: 11:20

Or tax breaks to make it more financially viable.

SPEAKER_01: 11:22

OK.

SPEAKER_00: 11:23

And this rare cancers bill is looking at how these regulations could be updated or reformed to provide even stronger incentives. OK. to invest in clinical trials and drug development for rare cancers, and also to explore the repurposing of existing drugs, which we talked about with Kira's case. So it's really about leveling the playing field

SPEAKER_01: 11:45

and

SPEAKER_00: 11:46

making sure that these patients aren't being left behind.

SPEAKER_01: 11:49

And Sir Christopher Chope, he brought up another important point. He was talking about the bill's geographical scope.

SPEAKER_00: 11:55

So he noticed that clauses two and three of the bill, they're specifically applicable to England and Wales. So it raises questions about What about Scotland? What about Northern Ireland?

SPEAKER_01: 12:05

Yeah. Are they being addressed in the same way?

SPEAKER_00: 12:07

Exactly. Yeah. And Dr. Arthur acknowledged the complexities of devolution.

SPEAKER_01: 12:12

Right.

SPEAKER_00: 12:13

But he did express his hope for collaborative efforts across the UK.

SPEAKER_01: 12:17

Yeah.

SPEAKER_00: 12:18

So hopefully there'll be some joined up thinking on this issue.

SPEAKER_01: 12:23

Yeah, let's hope so. Okay. So let's get down to brass tacks. What are the concrete actions that this bill is proposing?

SPEAKER_00: 12:29

Okay. So first off, it's going to place a formal duty. on the Secretary of State for Health and Social Care to actively promote research into rare cancers. So this is basically saying that it's a priority.

SPEAKER_01: 12:42

Yeah, so it's not just talk. It's like, okay, we're actually going to mandate

SPEAKER_00: 12:45

this. It's a legal obligation.

SPEAKER_01: 12:47

Okay, that's good.

SPEAKER_00: 12:48

Second, it's proposing a national specialty lead for rare cancers within the NIHR, the National Institute for Health and Care Research. So that would be an expert overlooking everything, making sure that research efforts are coordinated Okay.

SPEAKER_01: 13:03

And

SPEAKER_00: 13:04

we're actually moving in the right direction. So

SPEAKER_01: 13:05

it's like a champion, right?

SPEAKER_00: 13:07

Exactly.

SPEAKER_01: 13:07

Someone to really spearhead this. Yeah. Okay. What else?

SPEAKER_00: 13:10

Okay. Third, improving access to clinical trials.

SPEAKER_01: 13:14

Okay.

SPEAKER_00: 13:14

They want to develop a service specifically tailored for these patients.

SPEAKER_01: 13:18

Okay.

SPEAKER_00: 13:19

It'll be integrated into the existing be part of research registry.

SPEAKER_01: 13:22

Oh, okay.

SPEAKER_00: 13:24

So it's about making it easier for patients and doctors to find suitable research opportunities.

SPEAKER_01: 13:29

Right.

SPEAKER_00: 13:30

Because we know that's a huge barrier at the moment.

SPEAKER_01: 13:32

Yeah. Yeah. Okay. Keep going. This is good.

SPEAKER_00: 13:34

Okay. So fourth point, they want a national database of individuals who are willing to participate in clinical trials for rare cancers.

SPEAKER_01: 13:43

Yeah.

SPEAKER_00: 13:43

So that streamlines the whole recruitment process.

SPEAKER_01: 13:45

Yeah.

SPEAKER_00: 13:46

Which can be so difficult for these smaller patient populations.

SPEAKER_01: 13:49

Makes sense.

SPEAKER_00: 13:50

And then finally, as we mentioned, there's going to be that government review of the orphan drug regulations.

SPEAKER_01: 13:56

Right.

SPEAKER_00: 13:57

To see how we can make those incentives even stronger.

SPEAKER_01: 14:00

Okay, so it really sounds like this is a multi-pronged approach.

SPEAKER_00: 14:03

It is.

SPEAKER_01: 14:04

It's trying to tackle this problem from all sides, which is great.

SPEAKER_00: 14:08

Yeah, it's really encouraging to see.

SPEAKER_01: 14:09

And it was really great to see such strong cross-party support.

SPEAKER_00: 14:13

It was. It was incredible. I mean, you had MPs from across the political spectrum all sharing their personal stories, their constituents' experiences.

SPEAKER_01: 14:23

Like Mike Wood, the conservative MP, who shared the story of his friend Dan, who has faced multiple brain tumors. Right. And his symptoms were also misdiagnosed.

SPEAKER_00: 14:34

Yeah.

SPEAKER_01: 14:34

And Josh Fenton Glenn, a labor MP.

SPEAKER_00: 14:37

He talked about the loss of his brother.

SPEAKER_01: 14:39

Yeah.

SPEAKER_00: 14:39

To a rare salivary gland cancer.

SPEAKER_01: 14:42

Yeah. And and really emphasize the need for more time.

SPEAKER_00: 14:45

Exactly. More time for families, more time for research.

SPEAKER_01: 14:48

Yeah.

SPEAKER_00: 14:49

It was a really powerful moment.

SPEAKER_01: 14:51

It was. And Clive Jones, a liberal Democrat MP, he shared his own experience. Yeah. With male breast cancer and the unique challenges of of research for these smaller patient populations.

SPEAKER_00: 15:04

Right. And he suggested more international collaboration on clinical trials. Right.

SPEAKER_01: 15:09

Right.

SPEAKER_00: 15:09

Which is an interesting idea.

SPEAKER_01: 15:11

And Lorraine Beavers.

SPEAKER_00: 15:12

Yeah.

SPEAKER_01: 15:13

She's a labor MP.

SPEAKER_00: 15:14

She talked about immunotherapy.

SPEAKER_01: 15:16

Yeah. And the impact that had on her father's terminal cancer.

SPEAKER_00: 15:19

Right.

SPEAKER_01: 15:20

And really highlighted this need for greater access to these kinds of treatment.

SPEAKER_00: 15:25

Yeah. Through clinical trials.

SPEAKER_01: 15:26

Right. Right.

SPEAKER_00: 15:27

So, you know, it's clear that this is an issue that goes beyond politics. It's about humanity. It's about doing the right thing.

SPEAKER_01: 15:34

It's about compassion. It's about caring for everyone. Exactly. And making sure that everybody has a fighting chance.

SPEAKER_00: 15:42

Absolutely.

SPEAKER_01: 15:42

And what was really encouraging was that not only were, you know, backbench MPs expressing support, but we saw the government and the shadow government indicating their support.

SPEAKER_00: 15:52

So Ashley Dalton, the parliamentary undersecretary of state for health and social care, she confirmed the government's backing.

SPEAKER_01: 15:59

And Edward Argar The

SPEAKER_00: 16:00

shadow secretary of state for health and social care.

SPEAKER_01: 16:02

Right.

SPEAKER_00: 16:03

He also confirmed the opposition's support.

SPEAKER_01: 16:05

So this bill really has a chance.

SPEAKER_00: 16:07

It does. It does.

SPEAKER_01: 16:08

It's actually it could actually become law.

SPEAKER_00: 16:10

Which is fantastic.

SPEAKER_01: 16:11

Yeah.

SPEAKER_00: 16:11

Because it means that all of this these personal stories this discussion it's not just talk.

SPEAKER_01: 16:17

Yeah. It's not just words.

SPEAKER_00: 16:18

It's going to. hopefully translate into real action.

SPEAKER_01: 16:21

Yeah. Yeah.

SPEAKER_00: 16:22

Which is what these patients and their families desperately need.

SPEAKER_01: 16:24

Yeah. This deep dive really shows how powerful parliamentary debates can be.

SPEAKER_00: 16:30

They can they can really bring those crucial issues.

SPEAKER_01: 16:32

Right. The ones that are often overlooked.

SPEAKER_00: 16:34

Yeah.

SPEAKER_01: 16:35

To the forefront.

SPEAKER_00: 16:36

And it's driven by these personal experiences.

SPEAKER_01: 16:38

Right. The human stories.

SPEAKER_00: 16:40

Yeah.

SPEAKER_01: 16:40

And this commitment to building a fairer and more equitable health care system.

SPEAKER_00: 16:46

And that's what we all want. Right.

SPEAKER_01: 16:47

That's what we all want.

SPEAKER_00: 16:48

A system that works for everyone.

SPEAKER_01: 16:49

And this bill, while the fight is far from over, this is a really significant step forward.

SPEAKER_00: 16:56

It is. It's a beacon of hope.

SPEAKER_01: 16:57

It is. It is. So please subscribe to The Bench Report so you don't miss a topic that's important to you. Because at the end of the day, politics is everyone's business. It decks us all. It does. It does. Take care.