37. Australia Has Access to Enhertu—England’s Stage 4 Breast Cancer Patients Deserve the Same.

How would you feel if access to life-extending treatment was denied?

Living with stage 4 breast cancer is hard enough. I get it—I was diagnosed in February 2022. However, living in Australia, if my cancer were to become HER2-low, I have the comfort of knowing that the life-extending drug Enhertu is now available through our Pharmaceutical Benefits Scheme. Yet, this same drug remains out of reach for women with HER2-low breast cancer in England.

It isn't fair. So, I reached out to the incredible Jeannie Ambrose, who is living with stage 4 breast cancer in England, to discuss the emotional impact of being denied access to this treatment. In this episode, we not only highlight the profound frustration but also support the campaign fighting for access to Enhertu in the UK. Let’s shine a light on this injustice and raise awareness of the need for equal access to life-extending treatments. 

If you LOVED the episode, make sure to share this on your Instagram stories and tag us @hurdle2hope and @jambeannie

Key Episode Takeaways: 

• Understanding the Diagnosis: Jeannie’s Journey with Stage 4 Breast Cancer
• Why the Fight for Access to Enhertu Matters
• The Emotional Toll of Inequality in Treatment Access
• Enhertu: What Is It and Who Benefits?
• The Personal Is Political: Why We Should Care
• How You Can Help: Taking Action

Show Resources:

• Follow Jeannie Ambrose on Instagram
• Visit Breast Cancer Now to support the Enhertu campaign in the UK.
• Follow @thetittygritty for updates on the fight for access to Enhertu.

About the Guest:

Jeannie Ambrose lives in Cambridgeshire, England, and was diagnosed with stage 4 breast cancer de novo over five years ago. Now, as a HER2-low breast cancer patient, she is a patient advocate and has been involved with Breast Cancer Now to campaign for access to the life-extending drug Enhertu. Jeannie shares the personal impact of being denied access to this drug. For further details on why this decision was made and the efforts to gain access to the drug, please visit the Breast Cancer Now Enhertu Campaign. 

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Transcript

Wellbeing Interrupted Episode 37

Australia Has Access to Enhertu—England’s Stage 4 Breast Cancer Patients Deserve the Same.

Host Teisha Rose

 

00:00:00] Teisha: Hey there, Teisha here, and welcome to Episode 37 of Wellbeing Interrupted. Again, I'm sitting in our caravan. It's blowing the gale outside, but I quickly wanted to come on to do the intro to this episode. I interviewed Jeannie last week. Jeannie and I both live with stage 4 breast cancer, but as I'll share on this episode, our Outcomes in living with this condition may differ simply because I live in Australia and Jeannie lives in England.

[00:00:40] It's so unfair and when I realised that our government listed a drug recently as of the 1st of September that could help me down the track with stage 4 breast cancer. My heart breaks that that same drug is not available to other women and men living with breast cancer in England. So, please listen to this episode, um, if you're interested.

[00:01:11] And Jeannie and I aren't medical experts, you know, we're both not here to provide all the ins and outs of how all of our governments work and how all these decisions are made, but instead Jeannie and I could be You. We had no idea only, you know, five years ago that breast cancer would be part of our life and this disease impacts so many people that decisions to stop us accessing medication is so wrong and yeah, I hope you get a lot out of this episode and stay till the end as we'll share how you can help.

[00:01:58] And yeah, stand up for what is right. Welcome to Wellbeing Interrupted, the podcast dedicated to exploring the transformative power of a healing mindset. I'm Teisha Rose, your host and the founder of Wellbeing Interrupted. If you're on a quest to not just survive but thrive after a life changing diagnosis, then you're definitely in the right place.

[00:02:26] Living with MS and now stage 4 breast cancer has taught me a vital lesson. In the face of a life changing illness, our mindset is everything. Each week, I'll share insights, tips and strategies to help you build a happier, healthier, more balanced life. So let's begin your journey from hurdle to hope starting right now.

[00:02:56] Okay, so welcome Jeannie. Thank you so much for being a guest on Wellbeing Interrupted. 

[00:03:03] Jeannie: Thank you very much for having me. 

[00:03:05] Teisha: You're welcome. And I should say, we met online about a year ago, so I've been following you and your whole breast cancer journey online because we share a stage 4 breast cancer diagnosis, so I love having people on the show who I can chat, you know, about our conditions and just provide insights as to what we're going through.

[00:03:28] Yeah, yeah, definitely. Excellent. So, can we start by you introducing yourself, um, where you live, where that accent comes from, because it's a little bit different to mine, um, and what life was before your breast cancer diagnosis? 

[00:03:46] Jeannie: Yeah, so I'm from England, I live in Cambridgeshire, we're not that far from Cambridge, and I, Yeah, life was pretty normal beforehand.

[00:03:57] Um, I've got two children, so I had two teenagers. It was work, it was busy, busy, it was all the usual, all the usual stuff that, that goes on. Um, yeah, very lucky, you know, a nice, you know, A nice happy life. We were, we were happy. We were content. Um, yeah. And just, just really normal, really. Just the, the usual, usual run of the mill stuff with two teenagers.

[00:04:26] And yeah, so it was, It was lovely. When I look back, I think, yeah, the blissful unknown, I call it. That was when I was living the blissful unknown. 

[00:04:36] Teisha: It's so true. So then the, what, um, yeah, how did the blissful unknown become interrupted, I guess, in terms of you were diagnosed with breast cancer? 

[00:04:49] Jeannie: Yeah, it, it changed very, very quickly.

[00:04:52] It all happened really fast. So I'm someone who I used to check my breasts quite a lot because I lost both my parents to cancer, different cancers, but I was very aware of cancer. So I checked my breasts quite regularly, but unfortunately for me, my breast cancer didn't present as a, like a single lump that was all, you know, there's something, there's something wrong here.

[00:05:19] Um, I had tumors that grew both sides, so I had tumors in both breasts and my breast tissue felt quite dense and there was kind of on both sides areas that felt a little bit sort of harder, a bit firmer. Um, so it wasn't, neither side was, was like a particular, you know, classic pea sized lump. There was none, there was none of that.

[00:05:45] So both of my, both of my breasts felt the same. So I thought, okay, well, I'm getting older, you know, I'm 47. I'm thinking that my, probably my breast tissue is just changing. So I had these, these areas were forming for quite a while before I actually went to the doctors. You know, to actually find out what was wrong because I actually went about a little lump on one of my boobs, which I thought I'd been bitten.

[00:06:13] I was in the garden, been doing some gardening. It was a lovely, it was Easter and it was unusual for here. It was a really lovely, hot, sunny Easter. Um, and I thought I'd been bitten on one of my boobs and I thought, oh, that's not going away. So I went to the doctors. And they were like, can we examine you?

[00:06:33] So a nurse came in and then it was, how long have you had these, these lumpy areas? And then my heart just sank because I thought, oh, you know, I, I said, I just thought they were the same. I just thought they were the same. I did, you know, and I just felt really foolish. You know, for someone who thought I knew quite a lot about cancer, and thought I was very cancer aware, um, suddenly, it, it, they sent me over to, I go to Addenbrookes Hospital in Cambridge, and the service there was fantastic, and very, very quickly, On the day that I went, they gave me different examinations, mammogram, ultrasound, and they took biopsies on the same day.

[00:07:21] And they told me straight away, we are worried by what we've seen. So within a couple of weeks, I then had a scan just to, you know, rule out it. spreading, being spread anywhere else. Um, and unfortunately it had already spread. So really within two weeks of the day that I went to hospital, I knew that it was serious and that they couldn't confirm it until the biopsies had come back.

[00:07:48] But I knew it was serious. And then within two weeks, we knew that it was secondary. So it had already spread to quite a lot of areas. Um, in my bones. So yeah, breast cancer, both sides, spreads on my bones, everything turned upside down very, very quickly. So it did. It did change, um, yeah, life changed quite dramatically, quite quickly.

[00:08:17] Um, so that was a challenge. It was a challenge. Yeah, 

[00:08:23] Teisha: that's, that's the right word for it. And I was Stage 4 to start with as well. So, yeah, so we're 

[00:08:29] Jeannie: DeNovo. So they call that DeNovo, don't they? Where you go straight to secondary and that's, um, yeah, it's a lot. It's a lot, isn't it? It's a lot to cope with.

[00:08:39] Teisha: Yeah, it's, it's really scary to jump straight into that. So I guess, how did you cope? How was the impact on your family as well? Because it's scary for everyone. Yeah, 

[00:08:53] Jeannie: I think that in the beginning, um, I just focused on the fact that, you know, people could live with this for years. So we never, originally, we never told many people at all.

[00:09:07] The hospital told me that the average was three to five years, but we didn't tell, really tell many people in the very beginning. I mean, people know that now because I like to brag, Oh, I'm five years now. In the beginning, we didn't, there was no bragging. In the beginning. Um, it was, um, so. I think we just focused on, particularly with Bo and Eva, my children, our children, that, you know, people can live with this for years.

[00:09:34] So, you know, we just kind of focused on that. And things stayed from a point of view of Practical things, things stayed pretty much the same because I stayed at work. So I was a surveyor for building control for, um, local authority for my local authority. And I was really enjoying that job. And I worked with, um, a gang of men.

[00:10:01] So basically it was me and all the other, all the others were guys in the office. Um, and it was a really good atmosphere. So I, Just decided I wanted to carry on with work. So I carried on working and I carried on working full time actually in the beginning and that sort of saved us really because it was, you know, it was, um, normality.

[00:10:28] It was normality. It was, um, Carrying on every day, going to work. I was very lucky that my treatment, so I went on to a hormone therapy and targeted therapy treatment. I had letrozole and ribocyclib, and that actually worked very, very well for me. So I was able to function really well, um, and carry on with life pretty much, pretty much as, usual.

[00:10:55] Um, I mean, mentally, as you know, it's a different, totally different thing because you're suddenly, suddenly, you know that you're going to die. So, you know, you, you know, that your time is limited. So it changes the way you feel about life. Everything, what it did me, it changed my perspective, it changed my views on everything, because everything was suddenly so much more precious and so much more sort of raw as well.

[00:11:27] So I think, uh, both sides, so I'd probably be a lot more upset about things more quickly, but then on the other hand, I was finding joy in things a lot more quickly, in more basic things. So it ramped up my emotions both sides. But in the beginning, I think I was just amazed at the joy in life. So I was very, very lucky that my mindset automatically shifted to, okay, you know, I've just got to get on with this.

[00:12:04] And Isn't it amazing to be alive? So I was very lucky that I was well enough. If I'd have been really ill, I think it'd have been a different, um, completely different ballgame, Teisha, because if I'd have been very, very poorly in a lot of pain and very ill, I think I could have easily have just slipped into a massive depression and it would have been really much more difficult.

[00:12:26] I was very lucky that I was very well when I was dying. I mean, I felt, I felt ropey, but you know, nothing major. So, actually, it just transformed my life completely. You know, it was like, from the day I was diagnosed, your life's transformed, isn't it? You're just, everything's completely different. So, um, yeah, I think it's never, I never ever get used to the uncertainty of it.

[00:13:00] I never get used to that. I would say you sort of get used to having scans every three months or, you know, at one point I was having them longer because I was getting on so well with my treatment, but now I have them every three months again because I've had to change my treatment because it stopped working and I had to change.

[00:13:19] Um, so I think there's, you never really shake off that terror of the three month scan. You get used to it and you get used to having it. But I think the uncertainty probably has got worse as time's gone on, as my treatments stop working, because I know that things are ramping up now. And I might be lucky and have another treatment that works for quite a while.

[00:13:50] You know, you don't know, that's what we're all hoping for, isn't it? That our treatments keep us stable for as long as possible. But I definitely, I've started having counselling in the last sort of year and that's, that's really helped just to sort of get things off my chest, say things that I can't really say to family and friends and sometimes even things that I can't say to other patients even, you know, it's just things that I can just say.

[00:14:18] And that has helped. Yeah, that has helped. It's, um, yeah, it's the uncertainty. Uncertainty and fear, really. It's trying not to live your life in fear, isn't it? 

[00:14:30] Teisha: Yeah. 

[00:14:31] Jeannie: It's trying to live your life with hope and joy. And not live your life in fear. And for me, that's, that is the name of the game, is trying not to let the fear dominate.

[00:14:44] The fear is always going to be there. It's the nature of the beast. But it's trying to, isn't it? It's trying to like, Try and push it to the back of your head, not let fear be the main thing that's in your mind. It's um, so yeah, I don't work any more, so I took ill health retirement because I was definitely becoming, my body was becoming a bit more sore, um, my coordination isn't as good, so I knew that I shouldn't be still doing that role because I was out on site, I was on building sites, inspecting buildings and it got to a point where I thought I shouldn't, I was up a ladder, I was on a roof inspecting the roof and I thought I shouldn't really be doing this.

[00:15:25] I know I shouldn't be doing this anymore. So yeah, so I took ill health retirement last year and which has actually been wonderful. Because now I have, I thought we're like, people say, Oh, you might be bored. Not a chance. Not a chance. I absolutely love being retired. You know, deep down, I wish it wasn't until I was, you know, 65 or whatever.

[00:15:51] But I do, I am enjoying it. And I've decided, right, I'm going to enjoy it. I'm going to enjoy this time that I've got, you know, and we'll just drag it out for as long as we possibly can, Teisha. 

[00:16:03] Teisha: Yeah, absolutely. And it's probably will if you don't have the stresses on your body from other things as well. So I think that's a really good decision that you've made.

[00:16:15] Um, and yeah, and you're right with the uncertainty. You can't escape it. You know, it, it is, we don't know in those scans, you know, I never heard of the whole term scanxiety, and it's like, it's so real. You know, as much as you talk yourself, um, into saying it will be okay, I feel good. You're still in that tube or whatever.

[00:16:39] Just yeah, worried. Worried what they're seeing.

[00:16:47] I want to pause here briefly to explain a few important terms before we start chatting more to Jeannie. So first you'll hear us mention NICE. This stands for National Institute for Health and Care Excellence. It's an organisation in England that evaluates what treatments and medications will be available through the NHS based on their effectiveness and cost.

[00:17:17] We also talk about something called the Severity Modifier. This is a system NICE uses to determine how severe a disease like metastatic or stage 4 breast cancer is when deciding which treatments to approve and Jeannie will mention there's been recent changes to this system and that has Thanks.

[00:17:42] Resulted in treatments like the one we're discussing today being less accessible in England. And finally, we'll be focusing on a drug called Inher2. This drug was originally developed to treat HER2 positive breast cancer. But research now shows that it can also benefit people with HER2 low breast cancer, which is Jeannie's situation.

[00:18:15] For those listening who aren't aware of all, you know, the world of breast cancer, the tumors that we have can have different ratings. So from what I'm gathering at the beginning, as was similar. hormone, um, receptor, is that right? But then does the reading change? 

[00:18:35] Jeannie: Yeah, so what, what happened with mine? So I was, um, Estrogen.

[00:18:39] So my tumors, my cancer is estrogen fed. So I'm estrogen, you know, uh, receptor positive. But my, then my HER2 score is I was HER2 negative. So I was estrogen receptor and HER2 negative. So that's why in the beginning, um, we hadn't even heard of HER2 low. It was, you were either HER2 positive or HER2 negative or I think it's triple negative.

[00:19:09] Um, so, but I was Hur2Negative, and in the beginning Hur2Low was never even mentioned, so didn't, didn't know about it, wasn't aware of it, um, in any, in any way. So the same as you, I have, um, you know, drugs to keep my, to keep my oestrogen levels very, very low. And that's the treatment that I'm currently on. I have injections.

[00:19:35] I have fulvestrin now to keep my, we don't think that that's working still because my bloods are showing that my tumor markers are going up. So I may have to change again soon, but the lovely scan that we all look forward to in October will tell me that, it will tell me that then. At the time, I was just HER2 negative.

[00:19:59] And it was probably about a year ago, around a year ago, I'd say, when all of the information regarding Inher2 which is, sorry, Inher2 is a drug that we should be getting access to in England, but we are not. And that's really only, so that's only when I became aware of HER2 low, because I'm, I then was, went to my oncologist and said, well, am I HER2 low?

[00:20:36] Is it, is N HER2 a drug that I might need? So we looked at my score. HER2 negative and my score was in the HER2 low range. 

[00:20:48] Teisha: Okay. Yeah, and it's amazing now because these treatments are targeted, you know, I think years ago they couldn't tell what, um, different readings and all were for our tumours and I know when I was diagnosed, I had to wait and send off to a different pathology to see What my HER2 reading was.

[00:21:07] Um, so, you know, the good news is they can do that. The even better news is that there's a drug for HER2 positive treatments. But as I'm following you on Instagram and all the other incredible women, um, at the moment, Living with stage 4 breast cancer in England, now that the drug in Hur2 is not available, is that right, for people with low Hur2 or Hur2Hope?

[00:21:35] Yeah, 

[00:21:37] Jeannie: yeah, yeah, that's right. So, um, yeah, so that's really the only reason I asked about it is because we, Um, I'd started to hear that this drug wouldn't, it was looking like it wouldn't be approved. So this was before they'd actually announced that it wouldn't be approved. Um, and I sort of thought, well, why is that?

[00:21:56] You know, and I was talking about it was on the basis of cost and, and at the time I just thought, oh, you know, that's odd and all that doesn't seem right. And, um, yeah, that's when I found out I was HER2 low and that I would, Um, be able to, that would be a drug that I would need. So actually how it's panned out is it's absolutely massively snowballed for something that I've now got really quite heavily involved in.

[00:22:27] Um, originally I heard about it from a charity called Breast Cancer Now, and Breast Cancer Now do really, really good work, um, with, NICE and pharmaceutical companies and they were campaigning to get the drug approved and they'd already started or around that sort of time a petition to to get the drug approved.

[00:22:49] And then it became clear that what has actually happened is that NICE have changed the way that they look at secondary breast cancer. Um, and Effectively, it's been effectively downgraded. They would deny that it's been downgraded, but what they've done is effectively downgraded it. So they, they used to use a system which was, it was kind of based on like, um, an end of life modifier or quality of life years.

[00:23:24] So if you, I mean, this is a very, very basic, description. But this is my 

[00:23:30] Teisha: That's what I understand, very basic description, so that's fine. We're not, I'll say as well, we're not pretending to know all the ins and outs and we're not identical, but we, we're really talking about the emotional impact of decisions like this.

[00:23:45] Um, and we're living that, so that's where your expertise comes in. 

[00:23:49] Jeannie: Yeah. And so what happened is I started to get involved in it, which is how I sort of found out a lot more about it. Um, I got involved through Breast Cancer Now, so they were asking, is anybody HER2 Low? Is there anyone that will need this drug, who would like to get involved in campaigning?

[00:24:07] So I said, yes, straight away, you know, I'll, I'd like to get involved. So I sort of shared my story with them and been part of their advertising campaigns for Um, in Hur2, and there's probably, I think there's around 15 of us, um, patient advocates who have got involved with breast cancer now. And so that's involved us, like I say, sharing our stories.

[00:24:33] Um, you know, asking people to sign the petition, trying to raise awareness around the issue. Um, and we also, you know, attended a meeting at Parliament in May, um, which if I'm honest, from my point of view, it kind of felt a little bit like a tick box exercise, um, to say that, you know, they'd met with patient advocates.

[00:25:00] So there was ourselves, there was, um, there's another charity that does really good work called MetUp UK. And they do a lot of work with trying to help get drugs approved. So they were there as well. Um, there's been, it's been such a big effort by so many different people, because there's been lots of different people involved trying to And it's come from all different areas.

[00:25:27] So there isn't really one group of people who have done this. This has been a big, you know, a big effort from lots of different, you know, different individuals who have helped out with the campaign. Um, yeah, and I think that's, then you start to, you start to learn, um, why they've, why have they done this?

[00:25:49] Why have they decided? Because after a consultation period, they then decided, um, that they weren't, that they, they recommended it wouldn't be approved. So again, the final decision hadn't been made, but they recommended that they wouldn't approve it. So I think at that point, then, I started to find out a lot more.

[00:26:08] We started to find out a lot more about, um, why, you know, why, why is it not being approved? And it's a, it's all to do with this, um, called a severity modifier. So in 2022, they, they changed their system. Effectively, they revised their evaluation system for diseases. And. Metastatic breast cancer is now not considered as severe as it was previously in the previous assessment.

[00:26:42] So that's my sort of description of it, which means that it now doesn't get the funding that it would have previously got. So that's kind of what's happened. So, um, I think that NICE did this honorably. I think they were trying to, in my humble opinion, they were trying to spread the money further. Maybe, I don't know what the actual terms were.

[00:27:11] The idea behind it was to fund more diseases, um, but probably with the same amount of money. They've always said it wasn't a cost based exercise, is what they were, what they said at the meeting, but that doesn't wash, does it, Teisha? We know that, um, but, uh. Yeah, they said it wasn't, you know, that it wasn't on the, the, the, they're saying that the drug doesn't, isn't value for money.

[00:27:39] Um, the most frustrating thing about it is that the drug is already approved in Scotland for HER2 low patients. It's approved in Scotland. You know, 16 to 17 European countries all have it approved, and we don't have it approved in England. Um, another frustrating element is that the drug is approved for HER2 positive patients in England.

[00:28:08] So, um, NICE are already paying the higher price for this drug for HER2 positive patients. So it's a slightly different, it's a different type of metastatic breast cancer, but ultimately it's metastatic breast cancer. 

[00:28:22] Teisha: Yeah. 

[00:28:22] Jeannie: And I, I think that is the case because it was approved for HER2 positive before the changes came into place.

[00:28:31] Teisha: Uh, I 

[00:28:32] Jeannie: think, I think that's, I think that's, um, that's what's happened. Uh, so yeah, so we've been campaigning because it's, well, you know, it's all very unjust and unfair and, you know. If it was a drug that nobody had access to, because it was too expensive, then you'd perhaps be able to take the hit of that and understand the reasoning, wouldn't you?

[00:29:02] But because, um, other countries seem to value metastatic breast cancer patients, um, more than NICE does, I mean, I do need to say that. The pharmaceutical companies, the pharmaceutical companies involved have dropped the price. Okay. For NICE, and NICE have still said that that's not enough. So they've offered, and this is public knowledge anyway, so that they've offered a lower price than Scotland Pay and NICE and NHS England have said no to that as well.

[00:29:40] So it isn't just a case of pharmaceutical companies because that's the argument that NICE have all the time is, well the pharmaceutical companies need to drop their price. And actually, they've already done that lower than Scotland are paying. There seems, yeah. I think the breast cancer now, I think they said it quite well, that we're, we're stuck in a stalemate, you know, that patients are stuck in a stalemate between NICE and the pharmaceutical company.

[00:30:12] Um, we're stuck in the middle, so we are just, you know, pushing and pushing and pushing, particularly now to have the severity modifier looked at, because that seems to be, you know, The issue of why they now won't approve it when, you know, we're not asking for anything that we didn't have before. So we're not asking for more money.

[00:30:33] Teisha: Yeah. 

[00:30:34] Jeannie: We are just asking for it to be considered as a high severity disease. Also, by the time you have in Hur2, you are getting towards the end of your life. By the time you have inherited, it's not one of the drugs that you have early on. From what I can see, it's one that you have towards the end. Um, and it gives you a good quality of life.

[00:30:59] So we're not, we're not talking about breast cancer patients who are laying in their beds. being kept alive for longer by this drug. We're, this is people who are functioning, some are working, um, you know, if we're not working, we're volunteering, we are contributing to society, we are raising awareness, we are, you know, it feels like a very short sighted, decision, um, and it feels a little bit like a personal slur that my life's not worth it.

[00:31:33] You're actually saying that I'm not worth it. It's not a cure. It isn't going to cure us, but it will, you know, it will keep us alive for longer. And it, yeah, it's difficult. It's difficult to take. 

[00:31:44] Teisha: Yeah, it is. It's awful on so many levels because, yeah, you're, you're, as you said, you're not asking for something that hasn't been approved, you know, that they've already approved it for her to positive.

[00:31:58] And I think why I wanted to get you on the podcast was that In Australia, and I'm certainly not saying there's lots of drugs we don't list and we're not, we also go through with all different illnesses, similar advocacy, but the government has now, as of the, 1st of September has approved in Hur2 for Hur2Lope.

[00:32:25] And that, for me, I know, is a level of comfort because you think, well, I'm not sure, you know, what will happen. Like we said, our futures are so unknown, but that does give a level of comfort. And then I'm looking at your posts on Instagram thinking, this is not fair. You know, it's not fair that we in Australia can have that, but in England, you can't.

[00:32:52] And then in Scotland, like, you know, gosh, you're so close to, I worked in Edinburgh for a year, so I love Scotland, but it's just things, you're only a few hours away. And then, you know, there's a difference between having life extending treatment, whether you're across the border or not. It seems ridiculous.

[00:33:13] Jeannie: Yeah. It is, it is, um, yeah, it is, it is difficult to take. It is very difficult to take. Um, yeah, it's, there's a, there's been a lot of campaigning and, um, I mean, we had the meeting in May and they sort of agreed that they were going to meet again and then we heard, we heard nothing from that. We, we heard nothing from that for quite a long time, um, to the point where we all, there was a, um, 31 of us.

[00:33:43] Now, this was all organized by, there's a lady called Helen Addis, who we've mentioned before, um, when we're talking at the, the Titty Gritty is what she's called on Instagram. And it was organized, it was organized by her. She's been fantastic in helping, um, take the campaign further. Um, there's her, there's, they're four friends.

[00:34:04] So it's, it's Helen, Hannah, Caroline, and Nadia. And Nadia is on, uh, Loose Women on, on TV. And Helen is a producer. I think Helen, I'm sorry if I get this wrong. So it's been really, really helpful. And the four of them are friends and, and Helen's had, um, breast cancer and some of the others have had breast cancer and still have breast cancer out of the four of them.

[00:34:27] And so they've really, really helped. And Nadia has been able to raise the profile because of her. You know, sort of celebrity, um, which has been fantastic because often it's, you know, you need somebody like that to get people to look. to get people to look and to get people to listen. So, Helen fantastically organised all of us to go to London and said, can anybody come?

[00:34:55] You know, so we all went down there and met together, 31 of us to represent the 31 women dying a day of, um, secondary breast cancer. Obviously, secondary breast cancer does affect men too, 

[00:35:08] Teisha: but 

[00:35:08] Jeannie: it is 99 percent women that, you know, that those are the stats. It is 99 percent women. Um, and we went and had our bodies painted by Sophie T.

[00:35:20] So she has Sophie T Art in London. She painted us and the press came out because Nadia was going topless. So that, that was fantastic exposure. You know, Loose Woman Star goes topless and it just got so much more attention than it would have done, you know, than if it was, if it was just us. Um, so it was fantastic.

[00:35:44] It, we, you know, none of us wanted to be there. None of us wanted to be there, bearing our chests in public. 

[00:35:49] Teisha: No, so brave of you. I saw all that footage. I was like, whoa! 

[00:35:54] Jeannie: Yeah, it's not something you want to be doing, but it got a lot of attention. It got a lot of attention and it got press attention. Um, and the health secretary, the new health secretary, um, we, he was tagged in all the time and he actually saw it.

[00:36:10] So there, there is a meeting with him coming up at the end of September. Um, It's a very, it is a very short meeting, but, you know, he promised a meeting and he has stood by that. So there is a meeting coming up with him. So we're hoping that we can push, um, the issue. I mean, it won't be myself, but the issue of the severity modifier, because if.

[00:36:37] If the severity modifier isn't looked at, um, apparently they are reviewing it, but we have, I think the, the issue is, is we don't actually know the methodology, or I can't get that word out, the methodology that was used to change the severity modifier. So we don't know. We've heard different things from different people who have said that they, Oh, yes, no, someone inside, someone from NICE has confirmed that it was, it was done like this.

[00:37:10] And then somebody else said, no, actually, it wasn't done like this. It was like, so we don't actually know the criteria that they 

[00:37:17] Teisha: used 

[00:37:19] Jeannie: to come to the decision that metastatic breast cancer wasn't as severe. So. It's, it's quite difficult when you, when you don't have those, when you're trying to fight against a decision and you don't have all the facts available.

[00:37:35] I think some of, some data they might have given out and others they're saying, oh, no, that's confidential. Um, So that's something that we are trying to push, because I think it has also, or it will affect other diseases as well, as breast cancer patients, secondary breast cancer patients, will definitely see this affecting other drugs coming through.

[00:37:59] So if we're not careful, in Hurdle, we'll just be the first. of many, because then when other drugs come through, we're going to find that in England, they're going, they're going to be blocked. Um, you know, maybe not all of them, but there definitely will be other drugs coming through that are going to be blocked, which obviously for England's, um, cancer survival rate.

[00:38:25] It's going to be disastrous, isn't it? 

[00:38:27] Teisha: Yeah. Yeah, absolutely. And it's just that personal element to it. You know, this impacts individuals, it impacts families, friends, like it's just the ripple effects. Awful. And I think that's what we sometimes need to do is personalise these experiences because you can hear reports on the news saying, Oh, this hasn't been listed or, you know, there's no funding.

[00:38:54] And then you go to the next story, but the impact that has on individuals. And that's what I want listeners to this, to realise that we could be. you or we could be your wife or partner or daughter or sister or friend and the impact is real. 

[00:39:16] Jeannie: Yeah, and I think that, um, sort of MPs, that will be the point when they will start to listen and maybe want to take some action because currently we've found a lot that when we've written to MPs.

[00:39:32] Because NICE is sort of independent, they've just shifted it onto NICE and said, oh, that's the decision that NICE has made. NICE has said it's too costly, you know, it's not good use of NHS money, blah, blah, blah, that kind of, you know, response is what we've got from a lot of MPs. Some have been good, to be fair, some have been good.

[00:39:49] Um, but when MPs start having members of their family that are then affected, that is when People, you know, that's when I think they'll more sit up and think, Oh, actually, hang on, what's going on here? There's been a change here and now it's affecting, you know, so what, um, I think really, it's such a, such a shame and such a kick in the teeth, because.

[00:40:16] Actually, our NHS, it, I mean, it's under massive strain and I've seen the difference in five years being diagnosed, but actually our NHS system is brilliant. Um, for me, my treatment has been fantastic. My oncologist is fantastic. I have a, you know, a really good team and I definitely don't want to be kicking the NHS because actually, The NHS have saved, they've saved my life, haven't they?

[00:40:46] They've kept me alive and they've kept me alive well. You know, I've lived well. I've been so lucky. Um, you know, so the NHS itself, while it's under so much pressure because they, you know, the resources are, well, it's, it's such, everything's such a strain on the NHS. It is a fantastic system for me. In my experience, it's been.

[00:41:10] It's been brilliant and it's kept me alive. Um, it's just that if NICE are going to start, you know, I mean, the thing is, is that the pharmaceutical companies can sell these drugs to all the other countries so that they're not going to suddenly drop the price to what England wants, they're going to have to drop the price for everybody, aren't they?

[00:41:33] Otherwise, I mean, that's a whole different separate issue, Teisha, isn't it? We know that pharmaceutical companies are, well, how can I say it nicely? Uh, fat cats, let's just call them fat cats, in my opinion. They, you know, they, you know, there's a lot of money there, isn't there? There's a lot of money there.

[00:41:51] And I know that they argue that they need a lot of money for research, but we know that it's a big money making industry, don't we? We know that. And I think that's a whole separate issue, to be honest. But in this case, I feel that on this one issue of InHur2, it's, it's not a case of the pharmaceutical companies need to drop their price.

[00:42:11] It's a case of NICE really need to have a look at their severity modifier because cancer survival rates for metastatic breast cancer will decline. They won't keep up with the rest of the world. And is that what we want to be doing in England? I thought we were supposed to be, I mean, every country's proud, aren't they?

[00:42:32] They want to be world leaders in certain things. And this is just literally, isn't it? Holding us back. 

[00:42:40] Teisha: Yeah, absolutely. And I think, you know, and that's why also where if you're not living in either England or Australia, you won't know necessarily the close ties between our two countries, but, you know, there's certainly close ties and support and there's absolute rivalry when we come to sport and everything.

[00:43:00] And it's like, you know, in the scheme of things, all the money that gets thrown into our cricket game, which people in other countries won't even know about, but our game of cricket, and we play for the Ashes, and there's so much money to try and win that, and you think, really? But here, Australia, we're leading this now, and we shouldn't be, you know, England should be on par with us, and that's not right, and there's so many English people living in Australia, which is great, and it's like, well, share this podcast, share the message, put pressure on the government, um, because, you know, they can then pressure NICE.

[00:43:39] Um, to reassess this because as we said, we're, we're not out of the ordinary people, you know, we've got this, um, stage four to start with for both of us and if this drug helps prolong and extend our lives, why would you not give that? Um, as you said, you're already contributing to society and it's so unfair of you even having this.

[00:44:07] in your headspace, having to deal with this when you should have so many other things to be doing at the 

[00:44:14] Jeannie: moment. Yeah, exactly. It's an insult, really. It's an insult. Now, I shouldn't be campaigning, writing to my MPs, you know, having to do all this campaigning for a drug to keep me alive for longer when other countries are getting it.

[00:44:30] You know, we should be enjoying our lives, enjoying the rest of the time that we have. And, and also the impact on your mental health. 

[00:44:39] Teisha: Yeah, 

[00:44:39] Jeannie: it's definitely been detrimental to my mental health. So every now and then, all of us who are involved in it. then have to step away a little bit. You know, you find, you'll see people that are, you know, we're really involved in trying to campaign, contacting MPs, writing letters, shouting about it, and every now and then you just have to take a step back, because it's too much for your mental health.

[00:45:01] I never thought I would be in this position. I never thought that I would be begging for my life. really, which is what I'm doing. You know, I really never in the beginning, I never ever thought I'd be doing that. Yeah, I never thought I'd be doing that. 

[00:45:18] Teisha: No, and it's not fair. And I think, um, we all help in raising funds and, you know, applaud the research that's been done medically.

[00:45:31] And it's incredible. But then you think, that gives us hope, but then that hope is taken away from us, you know, by it's like, well, yeah, we found out this, this will help, but sorry, you can't access it, you know, and that's really, that's really hard to cope with. 

[00:45:49] Jeannie: Yeah, I kind of, I kind of feel that they know that what they've done is wrong.

[00:45:56] Yeah. That's how I feel. I mean, I might not be right, but, you know, when you look at it, how can it be right? It can't, can it? And I think they know that what they've done is wrong. whether are they going to just dig their heels and be like, no, we're not changing it, or are they actually going to think, you know, we don't know.

[00:46:17] That's what we're still pushing for, still pushing for that, you know, because it's the, the impact on patients. And, you know, we're, we're all, we're all doing everything we can to stay alive, aren't we? We're all trying whatever we need to try to try and stay alive. And it's, Yeah, it's very, very difficult.

[00:46:42] Teisha: Is there any sort of message that you would like to give, I guess, to the people in power? You know, whether that's nice or pharmaceutical or, you know, even just to your government to say, listen, you know, listen to us and let's make some changes. What would you say? I 

[00:47:02] Jeannie: think, um, I think I just, you know, I just think it's crucial that NICE look at the severity modifier.

[00:47:15] I think that when it comes to the government and MPs, they very quickly, because they don't understand the issue, not all of them, but they don't actually understand, um, you know, why we're Why we're here, why we're at this point, um, and it's because of the changes of NICE. And it's all very well to say, Oh, well, that, you know, NICE have, they're the body that approves it and they've decided it's too costly, blah, blah, blah.

[00:47:42] And they're, they're an independent entity. Well, actually they are accountable to the Department of Health. So, you know, they are still ultimately accountable to the government. Um, Apparently, they are having a review of the severity modifier, and I just really would like them to listen to it's not just coming from patients.

[00:48:04] That's the thing is, you know, the pressure isn't just coming from patients who clearly are going to be upset about it and want this drug. Um, there was a health and social care select committee session back in May with, um, lots of different speakers. Regarding InHurt2 and the severity modifier, and it was pretty unanimous that everybody was saying oncologists, um, cancer charities, um, pharmaceutical companies, um, We're all saying that the new system is not, is flawed, that it's not, you know, that it isn't right and how cancer rates, you know, survival rates will decline.

[00:48:48] So I think really, I really, really desperately want NICE to stop and listen to everyone. It's not just the cancer patients who are saying, clearly we're going to say, we want this drug, we want it approved. Obviously we are, because we're going to die sooner without it. It's the fact that everyone is saying that, you know, this isn't right.

[00:49:16] This isn't right. And I feel that they just are so blinkered and they just will not listen. They just won't, they just won't listen. I think they've made their decision and. Even though they, they perhaps, do they know it's wrong? I dunno. Maybe they, maybe they totally believe that it, that it's right. 

[00:49:36] Teisha: Mm-Hmm.

[00:49:36] Jeannie: But I don't believe that because, you know, in that session I've, I've listened 'cause you can listen to the whole of that session online, and I've listened to the whole of that session and everyone is saying it's not correct. You know, it can't be right. We are gonna, the consequences of it are not gonna be good for survival rates.

[00:49:56] So. I'm really, really hoping that they are looking at the severity modifier and they will adjust it accordingly. That's really what, what we really, really want them to do. 

[00:50:08] Teisha: Yeah, that, that's great. And in terms of, so you've made, um, reference to different organisations as well. So if there's anyone listening, we'll put in the show notes, you know, um, where updates can be, um, received from.

[00:50:26] So there was Breast Cancer Now, 

[00:50:28] Jeannie: you mentioned? Yeah, Breast Cancer Now, um, MetUp UK, they're, they're a good charity for, you know, I mean, like I said, there are others as well. These are just the ones that I've been sort of, you know, involved with, um, who are Breast Cancer Now, you know, they're the ones we've got, there's a petition of over 300, 000 signatures.

[00:50:52] And it's a record breaking petition, so there's a lot of support for this drug to be approved. Um, I feel like it's coming from all angles at NICE, um, and I'm hoping that they will do the right thing. Um, I think it will still take time because I think it's going to be a lot of pressure. So we're, you know, as I say, we're, we're still moving forward with, with the government and MPs.

[00:51:21] There's still, you know, there's still things that are happening there. Um, there is a potential for a, um, a case, um, a legal challenge. There is a potential for that, but obviously that costs a lot of money and, but that is being looked at as well. So there are still, there are still things moving forward.

[00:51:44] Hopefully it won't have to come to that. 

[00:51:46] Teisha: Yeah, absolutely. And we just hope that you don't have to use your energy, you know, to on things like this. Um, but I just think, you know, so many people within England will be so grateful to what you and the others are all doing, because it's not just for you, it's for the future.

[00:52:09] Women who are diagnosed with this disease. And as we said, it could be anyone, you know, anyone listening. I, I'd never even contemplated getting breast cancer three years ago. All of a sudden, here we are. Yeah, 

[00:52:23] Jeannie: you just don't 

[00:52:23] Teisha: know, do you? What's around the corner? No. And really, 

[00:52:28] Jeannie: the only reason that I'm sitting here.

[00:52:30] as well as I am doing this is because of the people that challenged and the people that pushed, you know, the patients before me. 

[00:52:39] Teisha: Yes. 

[00:52:39] Jeannie: And that's the thing, isn't it? Is that it is a hit to your mental health and you could walk away and think, actually, I don't want to do that anymore because it's just too, you know, it's too challenging.

[00:52:49] It's too upsetting. But I do really feel strongly that the only reason I'm here is And as well as this is because people, patients before me pushed, didn't they? You know, it's because patients before me pushed, they didn't walk away from difficult situations. They pushed for drugs, they pushed for access, they pushed for treatment.

[00:53:12] And I feel like, I want to carry that on for those patients to come. So that if it, you know, it's an absolutely rubbish situation, it's a terrible diagnosis. And you just want to make sure that you can do everything you can so that for the patients to come, so that they don't have, you know, that they can live longer, that they can, you know, I want it for myself as well.

[00:53:38] Clearly, I want it for myself, but I, I just feel like, you know, we, we just need to keep pushing because people did that for me. And so I'm now going to do it for, you know, for those patients. who will be coming along in five or ten years or whatever. 

[00:53:54] Teisha: Yeah, no, that's beautiful. Well, thank you so much for your time.

[00:53:58] I really appreciate it. As I said, I saw some of the posts and were following and I just wanted to, especially when I found out that that was the same drug that's been approved here, I thought that's so unfair. Let's see what we can do. So let's spread the word. As I said, if anyone's listening to this, Have family, friends, you know, in England, you know, just, just share it, um, because it, yeah, it's not fair and let's just try and get as much pressure as possible.

[00:54:29] And on my Instagram as well, I'll definitely be giving updates. Hopefully good things start happening by the end of, you know, um, well, the first steps, um, in, you know, that meeting in end of September. Yeah. 

[00:54:44] Jeannie: Yeah, yeah, let's just, you know, fingers crossed, good things to come. Yes, that's right. Surely, surely.

[00:54:53] Yeah, 

[00:54:54] Teisha: excellent. Well, thanks for your time. Much appreciated. 

[00:54:57] Jeannie: Yes, thank you very much. Lovely to chat to you. 

[00:55:00] Teisha: You too.

[00:55:05] Thank you so much for listening to this episode, but what I really encourage you to do is not to just, I guess, listen to what's happening with Jeannie and think oh my gosh that's so horrible, you know, not good for Jeannie. It is not right that a government and NICE are preventing Women and some men in England not to have access to a drug that will extend their life.

[00:55:34] So please visit BreastCancerNow. org. You can then go on their site, search for NHERTU.

[00:55:46] They've got details of the campaign. If you have family members or friends that live in England, let them know about this because as we know, breast cancer, then stage 4 breast cancer impacts so many people across the globe that it shouldn't matter which country we live in to determine whether we get access to drugs that can extend our lives.

[00:56:14] Also there's a um, Instagram, Facebook, Handle the Titty Gritty. I think I've got that right. Love the name. So the Titty Gritty. I'll also put that on the, in the show notes as, um, yeah, that site's also got updates and you can see some of the campaigns, um, Jeannie was talking about, including them, you know, stripping, Off and having their bodies painted, stepping outside their comfort zone, but doing this to highlight how unfair this decision has been.

[00:56:51] It's so important for us to stand up for what's right and I hopefully by doing this podcast we can also somehow contribute to creating some noise. Okay, have a great week. Again, thank you for listening to Wellbeing Interrupted and we'll chat soon.