This podcast contains the personal stories, opinions and experiences of its speakers, rather than those of Breast Cancer Now. In today's episode, we're discussing something you might have heard about in the news recently, which is about changing the system for approval so that we can get the breast cancer drugs that we need to have more time to live. It's an incredibly complicated issue as to why these drugs aren't getting approved in England. But the combination of Sophie as a patient talking about why, as a single mum, she really needs more time to live, and then Eleanor from Breast Cancer Now explaining the technical side of it, really, really helped me to kind of understand what the issue is and what we can try to do to resolve it. What came through very much was the inequalities between different countries in terms of access to drugs in the sense that Scotland has one drug Enhertu that patients in England can't access. As a patient, that seems incredibly unfair, but we don't give up hope. And I think hope was also a really important theme that came across in this episode, not giving up hope that things will change.

Today we're discussing a really important and topical issue, which is how we can make sure all patients across the UK can get access to the drugs they need to survive. Some of you may remember in 2024, we talked to patient Hannah Gardner about a drug called Enhertu, which certain patients are currently not able to access on the NHS. This is due to a wider issue with the drug approval system in England, Wales and Northern Ireland. We're going to be explaining what the issue is and how you can help. I'm joined by two guests, Sophie Blake, a campaigner, former presenter and secondary breast cancer patient, and Eleanor Pearce-Willis, a policy manager at Breast Cancer Now. Sophie and Eleanor, welcome to the podcast.

Thanks very much.

Thank you.

So Sophie, we'll start with you. Like me, you have secondary or incurable or metastatic or stage four breast cancer, call it whatever you want to call it. Can you briefly explain what that means?

My oncologist, when I was diagnosed, I think put it in the best layman's terms where he said, from my original breast cancer site, my primary site where I had in my right breast, it was almost like the seeds, tiny, tiny seeds that aren't even visible had spread to other areas of the body. And in my case, they had gone to my lungs, my liver, abdominal lymph node, pelvic bone, and also I had a new one growing on the skin of my lumpectomy breast. And once your primary cancer has spread and becomes stage four, it is then incurable, treatable, but incurable.

And you were diagnosed in summer 2022, the same as me, weren't you?

The same as you, yes. And fortunately, on my first line of treatment, I've been having a really good response. And within 9 months, I'm still now three years NEAD, no evidence of active disease. So I'm absolutely grateful for the drugs that are available right now. Absolutely amazing.

Yeah, I'm similar to you and just so grateful for the drugs that we're on and that's why the conversation we're going to have today is really important because we're talking about what happens with future access to drugs. So why is having access to new treatments so important for women like us?

The sad thing is, the devastating thing is when you're diagnosed, you realise quite quickly that there aren't that many lines of treatments available for our secondary cancers. And obviously there's different types of secondary breast cancer, but we're quite limited in the treatment line options that we have. And nobody knows how long each line could last. We've done well. We've got three years so far out of our first lines of treatment. Potentially we could have three more. That's it. We don't know how long those lines could last for. And already since we've both been diagnosed, we've lost so many people in the breast cancer community, some who tragically were diagnosed later than us where treatments just don't work. So to have new life-extending treatments become available, to become licensed, to extend our lives even further, it's everything to us. It gives us hope, it gives us the chance that we could live a lot longer, to be with our loved ones, to be with our families. Like any terminal condition, you hope that at some point it's gonna become a treatable condition that people can just live with a long, healthy, hopefully, life with good quality drugs. And obviously devastatingly for us, we're not at that point yet.

Breast Cancer Now is using the brilliant hashtag for this campaign, More Time to Live. What would you do if you had more time to live?

I'm a single mum to a now 18 year old daughter. She was 13 when I was diagnosed with my primary cancer. It's just been the two of us for all that time. And for me, every milestone that she's hit since I was diagnosed with secondary when she was then 15, it gives me that extra reason to keep on living. I wanna live anyway. I want to see more birthdays, more Christmases, more special moments, have more memories with her, but for me, being her mum and getting to each new milestone is absolutely massive for her and for I. You know, she wants to go to university, she wants to travel the world, she wants a career, she wants to get married, she's always been desperate to have babies, I wanna be a grandmother, I wanna have all of those memories with her. So to have access to the latest drugs is not just for me. It's for her, it's for my mum who doesn't want to bury a daughter too young. It's for everybody, it's for all of our loved ones. But yeah, I wanna travel the world. There's so many places I haven't been to. I love being busy. I still want to contribute to society. So just want to keep on living for as long as I can.

Yeah, I couldn't relate to everything you said more completely, see a person in front of me who is just so full of life and just wants to live and wants to do so much. And that's how I feel too. So hopefully we'll have this conversation today and people will understand a little bit more about what the issue is. So we did an episode on this podcast in March, 2024 with Hannah Gardner, who is a secondary breast cancer patient who needed the drug Enhertu for her particular type of cancer, which is called HER2-low. Hannah was involved in Breast Cancer Now's Enhurtu Emergency Campaign, but despite the campaign being supported by over 300,000 people and having the direct involvement of the Health Secretary, Wes Streeting, Enhurtu was rejected for use on the NHS in England. Hannah managed to get Enhurtu on a clinical trial, which was brilliant for her, but in reality, not everyone can access clinical trials and Hannah had actually worked in clinical trials, so she had more knowledge than the average person. If she'd lived in Scotland instead of England, she could have had it on the NHS, which is something we'll talk about shortly. Sophie, you were also part of that campaign and you were hoping to get Enhertu approved because it's a future treatment line that you might need. How did you feel when it was rejected?

I was devastated, but I was also absolutely flabbergasted. My oncologist when I was diagnosed said to me in 2022, there is a new drug coming out for your subtype which will be the first licensed targeted drug for HER2-low breast cancer. And there is no way NICE will be able to turn it down. It had a standing ovation. It's groundbreaking. So I felt really hopeful to have heard this news that even though I had this diagnosis, this life-limiting diagnosis, that this new groundbreaking drug was gonna come out and was going to be approved a few months later and that if my first line didn't work, this new option was going to become available. And when NICE rejected it, it was just beyond comprehension because they took away a lifeline for us. They've shortened our lives. It felt like they just didn't consider us worthy when they talked about the cost of the drug. Yeah, I mean, my family, everybody, were just horrified. Just thinking, so where does this go now?

Yeah. And as you put it before, sometimes we talk about Enhertu giving people an average of 6 months longer to live? 6 months does not sound like a long time to the average person, but when you put it in the years of your daughter's life and the experiences that your daughter might have during that time and the difference it might make of her starting uni and you being there for her on that first week of moving her to a different place. Like it's just, it's priceless, isn't it?

It's another memory made. And for us, when you're told, I was told by my oncologist when I was first diagnosed, he gave me 3 years. And so 6 months, it's huge to us. You know, We've got to 3 years, which is incredible, but we both know the life expectancy is still 3 to 5 years, depending on how you react to your treatments. So 6 months is massive to us. And then you think, during that time, could another drug be licensed and we could gain access to that? You know, each one could extend our lives by even longer, but it feels like the door's just been closed.

Eleanor, we'll come to you to sort of get to the bottom of what we're actually talking about, because it's a really, really complex issue. But the crux of it is that certain drugs that breast cancer patients need are being rejected for use on the NHS. Can you tell us in a nutshell why they're not being approved?

Yeah, so as Sophie says, frustratingly, it does tend to come down to cost. So there's an organisation called NICE and they make the decisions for which drugs are going to be made available in England and they make those decisions based on cost effectiveness. So is the benefit of this drug to the patients who are going to get it worth the price tag that's attached to it? And unfortunately, in the case of Enhertu, they decided that yes, this was an effective drug. It was, as you say, potentially gonna give people another 6 months of life. We think around a thousand women in England could have benefited from that, but it was a very expensive drug. And they decided that, ultimately at that price, they couldn't approve it. And they wanted the companies who were supplying this drug to reduce their price. But when you look at kind of other countries around the world – so Enhertu hasn't just been submitted in England. It's now available in 25 European countries – so, yeah, clearly the price wasn't as big a barrier in those other countries. So there seems to be something else going on.

And one of those countries was Scotland. Are you able to explain how England is different from Scotland in terms of drug approvals? You know, might be a person just living close to that border, and yet there's such a huge difference in the treatment that you could possibly have.

Yeah, absolutely. It's such a big inequality for people living between the two countries. But yeah, essentially, Scotland has a different approvals process. So they use an organisation called the Scottish Medicines Consortium, the SMC, and they make a completely separate decision. And I should say that the SMC isn't perfect either. There are some drugs that are available in England that aren't available in Scotland. But yeah, it does create this inequality across the rest of the UK. And where do Wales and Northern Ireland stand?

So Wales and Northern Ireland will usually adopt the decisions that are made in England although certainly in the case of Enhertu there was a situation where because NICE was taking quite a long time to come to that decision and Scotland had made a decision on Enhertu for HER2-low back in the end of 2023, Northern Ireland did briefly follow the SMC advice and make Enhertu for HER2-low available in Northern Ireland. But once NICE had made up its mind that access was taken away for future patients.

Oh, wow. So some people got on it and would have stayed on it, but then future patients would have denied it.

Yeah, so anyone who got access within that little window was able to stay on Enhertu, but not people in future.

And some listeners might have heard us refer to something called a severity modifier, which is very technical term. What does that mean?

Yeah, the severity modifier is sort of a bit of an add-on to the formulas that NICE use to decide whether something is cost-effective. So basically it means that the NHS can pay a bit more for drugs that are used to treat very severe conditions. So severity in this case means the amount of life and the quality of life that a condition will take away. And the severity modifier replaced something called the end of life modifier, which NICE used before 2022. And that had a similar kind of impact, but it was focused on drugs that we use to treat people probably within the last 24 months of their lives. So you might kind of think, okay, end of life conditions are probably automatically going to be very severe conditions, but that's actually not what's happened. So something like secondary breast cancer, we know that the use of secondary breast cancer that Enhertu is used for would have qualified for the old end of life criteria, the old end of life modifier. But under the new system, it's classed as severe, but not at the highest rate of severity. So the NHS can spend a bit more on drugs for that condition, but not the full amount and not as much as they had been able to under the old system, which is where drugs like Enhertu have been tripped up.

So Sophie was told 3 years ago that she might have 3 years to live. Are you saying that under this system that is not classed as a very severe illness?

Not necessarily. So every new drug that comes through this system, they will make a new calculation of how severe that condition is. So it's always a new calculation. But so far, secondary breast cancer hasn't been qualifying as very severe.

Sophie, how does it feel to be told that you might have 3 years to live, but that it's not classed as very severe?

It just doesn't make any sense, does it? I think it's really insulting, actually. I kind of feel very betrayed by the system that's been brought in. I think we all do, who it impacts to be told that your lifespan, your life expectancy is 3 to 5 years, but you're not severe enough to qualify for the latest drugs that are licensed, that are being used in comparable countries where they're progressing with their treatments and women with our conditions are doing better and we're falling behind because of money as though our lives really just aren't valued here and I've gone from being really upset to actually being quite angry with the entire system now because I feel like we're kind of being pawns in a game that is just about finger pointing between the pharmaceutical companies, between NICE, between the health department, the politicians. It's about budgets and they are just not giving us that bit of money by basically theoretically downgrading a life-limiting incurable disease to make it moderate, just so they don't have to give us that money for that drugs. I think it's disgraceful.

Eleanor, is this happening with all cancer drugs or is it just breast cancer?

So the most glaring example of it happening has been in breast cancer, but we know that there are concerns in other cancers as well. So myeloma there have also been some examples of situations where they think that the severity modifier has added an issue. The severity modifier only came in in 2022, which sounds like it was a long time ago, but drug approvals take a long time to come through the system. So we're really concerned that we haven't seen the full impact yet. And I should also say that actually drugs getting to a rejection, it's quite far along in the process. So we're quite concerned that companies potentially aren't submitting or aren't taking their drugs through that process. So we know that when a company has a new drug, they will kind of run the numbers and try to work out if they think this drug is going to be approved. And if they think there's a low likelihood of it being approved, potentially they won't even take it through the NICE system at all. So we don't get that big headline at the end of the process that a drug's been rejected by NICE, but it won't be made available in England when it might be available in other countries.

Wow. So we might hear of an amazing new drug that's available in Sweden or even Scotland and we've not even heard about it going through an approval process in England because the company's gone, hold up, this is probably not gonna get approved so we're not gonna even bother.

Exactly.

Wow. That's just actually so hard to get my head around.

Yeah, I think it's terrifying because it feels like it's blocking access to any future new drug and that the life expectancy, not just for us, but for future women being diagnosed, it's never going to improve here. 31 women die a day from secondary breast cancer, and that's not severe enough for you. I think it's really frightening. You look at the future of treatments here, and Wes Streeting's talked about his cancer plan so everyone can have access to treatments. How does this fit into that?

Sophie, you and I were part of a peaceful protest for Enhertu last summer, about a year ago. There were 31 women in that protest to represent those 31 women who die every day from secondary breast cancer. Not everyone in the 31 had secondary breast cancer. I think maybe only 10 or 15 of us. Yet two people from that protest have already died since then. One of them just last week in the middle of all this, which was Mizzy or Miranda, who was someone who did lots of campaigning and lots of work with breast cancer now to try and... you know, improve the future of breast cancer patients. It's startling, isn't it, I think, to think that two people out of the 31 have already died.

It's devastating. It's heartbreaking. It's cruel. It's wrong because our lives shouldn't be shortened this much when there are drugs available to extend them. How worried are you about other treatments that you might need being considered moderately severe or not severe enough? I just feel like right now the door is just closed to future drugs, just, unless the pharmaceutical companies agree with NICE to bring down the drug prices, but then are they going to do that? You know, what's going to motivate them to come to NICE and say, we've got these new drugs, as you were saying, are they going to spend the money on the assessments if they think it's going to be rejected? I just think the whole scenario for the future with them right now, unless the severity modifiers change, unless they change the bar of where we are rated with our cancer. It's scary, I really don't know what's gonna happen.

Yeah, I know for me, so I don't have HER2-low cancer at the moment, although your subtype of cancer can change, the cancer can mutate and have different receptors from what I had before, so it could be that I need Enhertu in future, but at the moment I don't. But I'm very concerned, like you are the future drugs that I will need won't be available to me. And just as a patient, you know, we've spent our lives with the NHS feeling very fortunate that we have this health system in the UK that we can access by paying our taxes. And you just assume that everything works in your favour. You just assume that drugs companies are there trying to make these drugs to keep you well and keep you alive and you just assume that everyone will do everything they possibly can to get those to you. And it almost feels like a naivety to have always assumed that because actually it's not necessarily always working in our favour and it is about money sometimes. And yeah, it is terrifying to think, you know, I haven't got to that situation yet, but to think of there being a drug that I need and me dying because I didn't get access to that drug... it's just, yeah, it's unthinkable really.

I think it's the same as you are, I was really, really shocked at how the system works once you're stage 4. There's so much red tape that seems to be involved and I don't feel you're seen as a human being. It is dehumanising the way the system works about whether you should qualify to be able to have a drug to extend your life. And all of a sudden it feels like you, with primary cancer, you feel like you're, looked after so much better and you become stage 4 where you think that the arms will really be wrapped around you. And it suddenly becomes this huge kind of... we all become advocates for ourselves and it's exhausting and we shouldn't have to be.

Yeah, you should just be spending that time with your daughter.

Yeah! It's precious time.

Eleanor, let's talk about solutions because that's one of the reasons why we're here today. So Breast Cancer Now published a brilliant report that went to MPs in the first week of July, and I was privileged enough to have written the foreword for that report just talking about my human angle, my lived experience of being a patient that needs those drugs, and talking about the human impact of those drug approvals. Can you tell us in lay terms about the report and what recommendations you're making to change the system?

Yeah, absolutely. And can I say your foreword was fantastic. I've had lots of feedback from people who said that it's amazing and really brings quite a techy nerdy issue back down to earth and back down to what actually matters.

Well, that's partly because I can barely get my head around it myself and if I can't then I'm sure many other people can't.

Fair enough. So yeah, in terms of the recommendations and what we want to change. So the first piece of action we're calling for is not actually from NICE, it's from Wes Streeting, the Secretary of State for Health. So NICE aren't actually allowed to make changes to their systems that could end up costing the NHS more money without the permission of the Secretary of State for Health. So the first thing we want really is for Wes Streeting to say, okay, I'm going to remove this requirement that the severity modifier is cost neutral. Cost neutrality in the context of the severity modifier means that when they transitioned from the old system that prioritised end of life drugs to the new system that prioritised drugs for more severe conditions, they didn't want to add any more cost into the system. So they didn't want the drugs budget to inflate basically as a result of that change. So we went from a system where a few advanced cancers were getting extra priority to a system where more severe conditions were getting extra priority. So a lot more conditions, which basically meant there were more people wanting a piece of the pie, but the pie wasn't getting any bigger. And that just, that has kind of been the root of some of the problems. So yeah, we want the Secretary of State for Health to remove that requirement. So our first recommendation is if we're treating the Secretary of State for Health, we want him to remove that requirement for cost neutrality. So for the severity modifier not to be costing the NHS any more money, which will allow the NHS to invest a little bit more money in drugs for severe conditions like advanced cancers. And once he's done that, NICE would be freed up to review the severity modifier. So we want them to lower the bar essentially for what counts as a very severe condition. So the more conditions can qualify for the severity modifier, more money will be available for funding those drugs. And essentially we think that that will mean that more drugs for secondary breast cancer can be approved.

Got it. So that's why you've called the report "Setting the Bar Too High" because you want them to, you want NICE to lower the bar with the permission of Wes Streeting, so that conditions and diagnoses like mine and Sophie's will be such that they say, okay, this qualifies for you to have these drugs, and any future drugs go through.

Yeah.

And what are Wes Streeting and NICE saying about this so far?

So currently the line from both Wes Streeting and from NICE is that they think that the severity modifier is operating as intended. So we know that some conditions, like cystic fibrosis, like severe conditions that we do think should be getting benefits and the drugs for those conditions should be getting approved are getting approved. So that's a great thing. And it has stayed cost neutral. So it's not costing the NHS more money. So yeah, they are viewing it as a success at this point. And part of our job with this campaign is to make sure that they're aware of the impacts that it's having on people with secondary breast cancer.

And when you talk about that, it almost sounds like we're pitting breast cancer against other diseases. And I can't speak for you, Sophie, but I'm sure it's fair to say that none of us with secondary breast cancer want people with other severe illnesses or life-limiting illnesses to have less access to drugs that they need. I want everyone to be able to access the drugs that they need to live for their children, for their own lives, for their... for everything that they're going through. And also, we're all so conscious of the strain on the NHS. It's so evident how, especially when you've had surgery or you've been in hospital, you've experienced wait times and you've experienced difficulties in the system and you've seen how hard those nurses work and how hard those oncologists work. I just want to say, I think, that I'm so conscious of that, and why this problem isn't easily resolvable and also that we're not saying we don't want to take money away from another person who needs a drug and give it to a breast cancer patient. We want everyone to be able to have that. And what sort of timeline are we looking at? Because obviously early July, we're actually speaking in still in early July, but when this podcast goes out, a little bit of time will have passed. you put this report out, we actually went to Parliament and spoke to lots of MPs and kind of explained the issue. I was there to talk about what this means from a patient point of view and actually seeing the way those MPs responded to me and saw person in front of them, relatively young person like them, was really, I think, important. But what are you asking of them in terms of time? When you're expecting a response from Wes Streeting?

Yeah, so we don't have a specific timeline in mind. So one of the important things about the Enhertu campaign and one of the reasons we campaigned and like yourselves campaigned so hard on Enhertu was that there was a little bit of a window after that decision came out where the decision could have been reviewed. But with something like the severity modifier that's about the wider system, we don't really have a specific timeframe for when that change is made. So our first job really is to convince both Wes Streeting and NICE that this is a big issue that needs action. And part of our campaign is encouraging people to write to their MPs to make sure that they are raising this issue with Wes Streeting. But yeah, we don't have a sort of specific timeline for when that change will happen. And unfortunately, even if we were to get a change made to the severity modifier – and we know that NICE don't always act, NICE aren't always the quickest to act – that may take quite some time. With the drug like Enhertu, it wouldn't be automatically approved. After that point, it would have to be reappraised by NICE. So that could take a really, really long time, I'm afraid.

Which is devastating for people like me and Sophie, because as you say, we've both been 3 years on a disease that a lot of people don't survive more than 5 years. I've got reason to feel more optimistic than that just because of the treatments and surgeries that I've had, but so many people don't and can't. And to think that we're already 3 years in and a change in the system is gonna be slow and then the time can go by and you don't get access to that drug, how does that make you feel?

So we don't have the time to wait.

Yeah.

We don't have the time for people to decide to make other decisions, to look into it, to delay looking into it, you know, we're just... women are going to be dying whilst so many other countries are moving forward and progressing and we're just gonna be dying. And I just think that's shameful.

What would you say to Wes Streeting if he were listening to this podcast?

I think you need to remember that we're human beings, that we contribute to society, that our lives are valued, that we are, and I think we've all said this, all of us campaigners, you know, we're daughters, mothers, sisters, aunts, workers, carers. We contribute massively to society and to be told that your lives aren't cost effective when you... being diagnosed with a disease that you have no control over. When we live in a postcode lottery system, when you can see other people having access to it, as you said, across the border in Scotland, but we will have to just die before our time because we're just not considered worth that extra bit of money. I just would implore Wes to please just realise the devastating impact the severity modifier is having on on primarily women, you know, it said it's about 1,000 women at the moment, but the consequences of this as it goes down the line could be absolutely detrimental. And this does not fit in with his cancer plan.

Yeah. And I think one of the key words that I'll take from what you've just said is workers and contributing to society, because I can understand how a politician might think a woman who is a mother, you know, that's on a very individual level, albeit incredibly important. But when you think, you know, people with secondary breast cancer who need access to drugs, they're everything across society. They might be doctors, they might be nurses, they might be lawyers, they might be campaigners, they might be politicians. They're everything, you know, we are people who are contributing to society and who are important to this world. We're not necessarily people who are just patients lying in bed you know, you and I, we're still working. We're still, and you know, obviously if you're not able to work because you're too sick, then that is, you know, a huge, huge issue. But there are a lot of us who are working. We are contributing to society. We're not just a... a statistic that the government can say isn't worth anything, we're worth so much.

And we can continue to do that, you know, if it becomes a treatable disease, which you hope, you know, as Breast Cancer Now want to make it 2050, that all women diagnosed with breast cancer will live, how is that going to happen if this isn't changed, if this current system is not changed?

Yeah, absolutely. And Eleanor, in terms of Enhertu specifically, is anything happening with that at the moment? Is there any chance of that still being approved or does it take a change in the system now to make Enhertu happen?

Yeah, it would take a change in the system. We've now passed the point. There was a sort of rapid review period after Enhertu was rejected where the decision could have been revisited. But the companies essentially have told us now that they won't resubmit Enhertu for consideration until the system changes.

So basically last year in 2024 Breast Cancer Now had this big Enhertu emergency campaign and now because that that chance that window has closed you've transitioned to talking about changing the system which you know is so hugely important and hopefully means that instead of focusing on one individual drug, we're now talking about all future drugs and potentially impacting other cancer patients as well.

How can our listeners support the campaign? I know you mentioned emailing MPs, how can they do that?

Yes, so we'd love for people to get involved by going to our website, so breastcancernow.org/MoreTimeToLive. You will find there a campaign action. So if you put in just a few of your details, it will kind of auto-generate a letter to your MP. And that will ask your MP to raise this issue with Wes Streeting. So that's really important for us to just raise the issue and make sure that MPs are aware of it and also to show Wes Streeting that there is an issue here that he needs to look at.

Brilliant. Until a couple of years ago, I honestly, when people said, email your MP, I didn't know who my MP was, just not very politically involved like that, but actually this automated email that Breast Cancer Now have done, it couldn't be easier. You just go in there, you put in your name and your postcode, it generates the email and you just press send. If you're not very tech savvy, just go to the link in the show notes on this podcast, or just go to breastcancernow.org/MoreTimeToLive and you'll find that email. It couldn't be easier. You can also go on social media if you're on social media and post about it there. You might have, perhaps if you have a following or if you don't have a following, you can talk to your friends, you can talk to your family and just kind of encourage people to email their MPs.

Yeah, absolutely. We need all the support we can get. We've got 61,000 women I think living, is that right, with secondary breast cancer in the UK. And all of those women's lives, as we spoke about, are valued and contribute to society. There will be more and more women diagnosed every single day with breast cancer and around 30% go on to get secondary breast cancer. This isn't just impacting us right now, this is impacting thousands of future generations of women. So if this system isn't changed, the impact it's gonna have is gonna be devastating on thousands of more families. And the cycle is just gonna continue. And I'm sure the voices will get louder and louder when people end up in the horrible club that nobody wants to be in and realises what's going on. So if we can get it changed as soon as possible, then that would be wonderful. And if everyone could help us do that, then that would be absolutely amazing. As we all know, we'll do anything we can to extend our lives. And I look at my daughter every day and that's the reason that I keep on doing it and just know how important it is. Our voices need to be heard.

Your daughter has come along with you to Parliament sometimes. She's been involved in some of these things. And I know you've also, it's a very separate issue, but you've also been campaigning for assisted dying to be approved in the UK. And your daughter has been, you know, been along and sort of experienced you by your side with a lot of these campaigns. What impact has that had on you as a single mum with an only child, your daughter, on sort of your relationship and your mental health?

At home, initially, we have a very dark sense of humour in our family. I always say to her, you can ask me anything, you can talk about anything from my diagnosis. However you think it's gonna hurt my feelings, know, doesn't matter if there's things you want to ask or talk about with me, do that. But I've always been very careful to not go overboard in what I discuss with her. If she wants to know things, then I will share it with her. I've never said, oh, look at this interview I've done, or what's that telly interview I've done? I didn't want to, to have an impact on her life. I wanted to keep life at home as normal as possible. But over the last year, she's become much more aware of the campaigning and what I'm doing and has taken a real interest and has done a lot of research herself. And that's when last year she actually asked if she could start coming along. And she wanted to be there as the voice of somebody whose mother's life was being impacted by these, I think she's just incredible because the strength it took for like a 17 year old to have to face the fact of knowing that her mum has got this diagnosis anyway and come into terms with that, but to actually want to be involved and to help. And it's very much been her decision. You know, I would never, we've had lots of talks about it. Do you wanna be having these conversations? Are you gonna be okay having these conversations? And it's kind of, it's changed her way of thinking about her future as well, doing things like this. She's kind of very much thinking about looking into politics now because it's made her really determined. She's seen how hard people have to fight for things and how exhausting it can be for us to have to do stuff like this when we should just be living our lives the time that we have left. And I'm so proud of her. Her support has just been absolutely incredible and she still wants to be involved as much as she can be. And I'm just, amazed. I really am, about how strong she's able to be through all of this.

That's incredible. And yeah, I mean, we've had conversations on this podcast about talking to children about cancer and talking to teenagers about cancer and to think that you've brought up this daughter who is now literally talking about cancer in a public forum, talking to politicians about it. It's the absolute opposite of what most children or teenagers or young adults would want to be doing. But I can see how you would be incredibly proud of her, but I can see how you would also absolutely much rather be at home or going out with her and doing something else and not spending your time on this campaign.

Neither of us should be having to do this at all. We should just be making our memories together. I want it, like I said, keep things as normal as possible. And while I'm doing well on my drugs, I'm still able to make amazing memories with her rather than using that time for doing things like this. But it is so important to me and I know to you and to just thousands of women and she's I think that's why it's worked so well because she's so supportive of that and I think because we're able to have a really good communication the two of us I'm very fortunate with that but you know let her have her space as well to do her own thing and as I say it will always be absolutely her choice.

Absolutely yeah. And Eleanor, I don't know how you felt last week when we were talking to MPs, but I noticed that lots of the MPs who came to talk about the Setting the Bar Too High report had had experience of breast cancer or cancer in some way. So some of them were walking in and saying, hi, I have a niece who has breast cancer or my mother-in-law died from breast cancer or, you know... Most people have some experience of someone in the family, whether it's them or whether it's a relative or a friend who has had breast cancer or another kind of cancer. It really is something that impacts everyone in some way, isn't it?

Yeah, absolutely. I had lots of similar conversations and yeah, people, it's a personal issue for a lot of people. And did you get the impression last week that they sort of took on board what we were saying?

Yeah, I think I did. I think I personally had a lot of good, engaged conversations with MPs and we had a lot of MPs in the room as well. So that was a really positive sign.

We'll keep our fingers crossed. I'd like to finish with the question we're asking everyone on this podcast. Breast Cancer Now's vision is that by 2050, everyone diagnosed with breast cancer will not only live, but be supported to live well. I'll go to you first, Eleanor. What does it mean to you to live well?

It's tricky question, but I think I'm going to say living well is about picking the small fights every day to make things a little bit better. I mean, we've been talking today about some very niche, nice policy, but I think the more changes we can make, those little granular changes that just make things a little bit better, the closer we will get to that 2050 bold vision.

Well, before we move on to Sophie's answer, I'd like to say thank you, Eleanor, to you, all your team, everyone at Breast Cancer Now who is campaigning for these things to help patients like me and Sophie to live for longer. Because honestly, there's a power in a patient, but there is a power in a big charity organisation to do this work. And we cannot do it without doing it together. And what I realised last week in Parliament when I was a little bit brain fried and couldn't get all the technical stuff out was that I needed the person by my side from Breast Cancer Now, from a professional side and from a technical side about what it means. And to just have that partnership is just completely priceless. So thank you to everyone at the organisation. We see what you're doing and we really appreciate it.

The support from Breast Cancer Now, especially, I mean, from the moment you're diagnosed with breast cancer, but especially with the campaigning and with Enhertu, it's just been phenomenal. I don't know how we would have got to any of the stages that we have got to throughout this process without Breast Cancer Now, I really, really don't. So yeah, deep gratitude to all of you guys.

Thank you, that's really lovely to hear.

And just having this platform with the podcast as well, I've never said that before and I'm getting very emotional today, but just actually being able to have this platform, to be able to talk about it and having that go to lots of people is really, really valuable. So Sophie, what does it mean to you to live well?

To live well is to just be able to continue to live my life being me, know, fulfilling the dreams that I had hoped to have. And I know life has been shortened, but it's still having hope, still wanting to make memories, still want to enjoy every moment I possibly can. Working through my huge living list. So I need a lot more time. But I think the main thing is why we do things like this as well, is that hope that we can continue to do those things.

Yeah, and we never give up hope.

No.

We really don't. And almost the more I work on these campaigns, the more hopeful I feel. What's next on your living list?

Travel, it's always gonna be travel. My daughter's planning on going off during her backpack year, so I really wanna grab as many little moments as I can with her before she disappears and then goes off to university, and then my life and hers goes in a very different direction. So over the next year, I just wanna do as many quality things as I can with her before, yeah, she kind of moves off into even more so in adulthood. So it's kind of, yeah. That'd be the next stage. It's always the baby steps, isn't it? Kind of like scan to scan, get my travel insurance. Most importantly, and then plan the next journey.

Fantastic. Well, if you'd like to support Breast Cancer Now's campaign to change the drug approval system, you can go to breastcancernow.org/MoreTimeToLive or find the link in our bio to simply fill out a pre-written email to send to your MP. You can also spread the word on social media, sharing Breast Cancer Now's posts and videos and using the hashtag more time to live. Together we hope to give breast cancer patients more time to live. Sophie and Eleanor, thank you so much for being here today and for all that you're doing with this campaign.
Thanks so much, Laura.

Thank you.

If you enjoyed this episode of the Breast Cancer Now podcast, make sure to subscribe on Apple podcasts, Spotify or wherever you get your podcasts. Please also leave us a rating or review on Apple podcasts and perhaps recommend it to someone you think would find it helpful. The more people we can reach, the more we can get Breast Cancer Now's vital resources to those who need them. You can find support and information on our website, breastcancernow.org and you can follow Breast Cancer Now on social media at Breast Cancer Now. All the links mentioned in this episode are listed in the show notes in your podcast app. Thank you for listening to the Breast Cancer Now podcast.