The hidden costs of breast cancer

What are the hidden costs of breast cancer? What advances in breast cancer treatment have been made, and how can we tackle the problematic inequities that remain? What needs to be done for patients with metastatic breast cancer? Gavin and Jessamy are joined by Felicia Knaul, Reshma Jagsi, and Fatima Cardoso to discuss the recent Lancet Breast Cancer Commission.

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Transcript

This transcript was automatically generated using speech recognition technology and may differ from the original audio. In citing or otherwise referring to the contents of this podcast, please ensure that you are quoting the recorded audio rather than this transcript.

Jessamy: Hello, welcome to The Lancet Voice. I'm Jessamyn Bagnall, and I'm joined by my co host, Gavin Cleaver. Today, we speak to three commissioners from our recently launched Breast Cancer Commission. Despite tremendous advances in breast cancer research and treatment over the past three decades, leading to a reduction in breast cancer mortality of over 40 percent in some high income countries, gross inequities remain, with many groups being systematically left behind, ignored, and even forgotten.

The work of the Lancet Breast Cancer Commission highlights crucial groups, such as those living with metastatic breast cancer, and identifies how the hidden costs of breast cancer and associated suffering are considerable, varied, and have far reaching effects. The Commission offers a forward looking and optimistic roadmap for how the health community can course correct to address these urgent challenges in breast cancer.

In this episode, we particularly focus on the hidden costs of breast cancer metastatic breast cancer and patient empowerment and communication. These three areas, that are very prominent in the commission, represent new ground in breast cancer research.

Gavin: A real delight to have you all here to talk about the Lancet's Breast Cancer Commission, which just published a few weeks ago. In, in the Lancet. The Breast Cancer Commission itself lays out a road map and focuses on different aspects, all of which are important for progress towards better care for women with breast cancer.

You're all involved in different parts of the commission so I thought it might be interesting, first of all, to tell us which part of the commission were not just the most important but the kind of most intriguing, most interesting to you perhaps we could start with you, Reshma. Thank you. 

Reshma: I'm Reshma Jagsi, I'm a professor of radiation oncology at Emory University School of Medicine and Winship Cancer Institute, where I serve as the chair of the department and a senior faculty fellow in ethics.

So I started off in a work stream that I actually ended up devolving into developing into. two of the the themes. One focused on personalization and the other focused on patient centered communication and empowerment. And what's really important and links those two themes together is that, of course, to personalize therapy, we must understand patients preferences and their values.

And so it's really essential to emphasize that. The ways that patient centered communication can acknowledge the unique background and needs for information of each individual, consider their situation holistically, and work with the patient to define and achieve shared goals in their care. And the emphasis of the commission on the fact that this is not a privilege for those in high income settings alone.

And indeed that this is something that, that should be applied across national borders and the socioeconomic spectrum. Bye bye. 

Gavin: Felicia, perhaps you'd like to tell us about your most interesting parts now. 

Felicia: Felicia Marie Knoll, I lead the University of Miami's Institute for Advanced Study of the Americas, and I'm on faculty at R.

Miller School of Medicine, but I'm also the founding honorary president of an NGO in Mexico called Tomate la Pecho. And maybe I'll answer with two different hats one as an economist or health systems researcher and leading the Lancet Commission on Cancer and Health Systems, and the other as someone who lives breast cancer myself having been diagnosed in, in, in 2007.

So I think all of this commission was incredibly important and interesting. The aspects that have to do with the communication and the voice and empowerment and the co creation of health systems. by and with patients and persons who are with patients was incredibly important, but matching that to what I know Fatima will speak about, which is advanced or metastatic disease is very unusual because these are typically the women in families who do not have voice because it's often a disease that.

Yeah. eventually means end of life care. And this is a group that we don't give voice to as much as we should. So that's one piece I think was very interesting. And then more as a health systems researcher, this gave us the opportunity to analyze the hidden costs of breast cancer both the full economic costs, But also the indirect economics costs associated with lost income, losing your job, yourself, having someone in your family lose their job to be able to provide caregiving for you as someone who's living with this disease.

And then also we drew on the work of the Lancet Commission. on palliative care and pain relief to ask about what we're calling intangible costs. The suffering that's associated with having a breast cancer diagnosis for a patient, for a caregiver, for a loved one, and those are almost never measured even though they're the parts that sort of most costly to the patient, that kind of suffering.

So those are the pieces that I was most engaged in. But the whole way that it links up in a systemic view that will help us to think about other cancers and health system strengthening is what I found most important. 

Gavin: Fantastic. Thank you, Felicia. And Fatima, how about you? 

Fatima: So I'm a medical oncologist and an expert in breast cancer.

I'm the director of the breast unit at the Champalimau Clinical Center in Lisbon, Portugal, and I'm also the president of the Advanced Breast Cancer Global Alliance. As Felicia already mentioned, my heart always goes to the part on metastatic or advanced breast cancer patients. And I'm particularly happy because a central role was given to this stage of the disease, which is breast cancer.

As far as I remember, very rarely done, even in very important initiatives, has, for example, the Europe's beating cancer plan, or even the WHO global breast cancer initiative. And what makes this very important and relevant, this commission is that there was no, Fear of giving a front row to, to the patients with metastatic disease and to do it with an optimistic view, not just with the usual pessimistic view, but looking into the future as it may, it can, and it will be brighter than the present for these patients.

So I think it was very important for me, but I would also like to say that it's the whole commission. Not just the parts of it. And I think when you look at the road map, there are very calling words like collaborate, and I think collaborate is probably the fundamental word, because for us to end the inequalities that exist, and that's what motivated, I believe the writing of this commission there is no better word to say than collaborate.

That would be my points. Thank you 

Gavin: Yeah, it did stick out to me when reading through the commission how often it was mentioned that multidisciplinary teams needed to get involved In cases, I thought that was that was very interesting And of course the three of you are a testament to the need for multidisciplinary teams jessame usually I don't ask you questions, but you know a bit of a surprise I guess You ran quite a lot of this from the lancet side of things So what really stuck out for you as the commission was progressing?

Jessamy: First of all, it was an incredible group to work with led very ably by Charlotte Coles or Professor Charlotte Coles, I should say. Just a really passionate group of people who feel so strongly about the work that they're doing and are doing really interesting work. So it was an absolute delight and pleasure, but I remember the first time that I read it and it, it really was that metastatic bit that stood out to me so strongly, and I was just.

It was so great to see it there. And I remember having a conversation with Charlotte afterwards about, how we needed to really shine a light on that. And I just wanted to pick up on it that a bit more with you three about why you think it is, you've all said we afford them less of a voice.

People who have had metastatic breast cancer there's no study that's going to be able to tell us exactly why that is, but maybe we could just dive into some of your thoughts and some of the work that you did within the commission about why that is and what we can do to make sure that they receive the best care that they can from now on.

I, 

Fatima: maybe I can tackle that first, that there are many reasons, and we've been trying to also research about it, why, and quite a long time ago, more than 15 years ago, when we started the work of the Global Alliance, the stigma around metastatic was everywhere, including in, within the patient groups. And although I understand very well, because and Felicia, you would understand as well because for an early breast cancer patient, you don't really want to be facing what is the potential reality of your future.

It is a risk. It is always there, but you don't want to face it and embrace it. It's it's difficult for the patients. But I have to tell you that the groups. that have evolved the most throughout these 15 years have been the patient groups. They have changed dramatically, and now all of them basically have resources for metastatic patients, have information dedicated to metastatic patients, and are no longer afraid to deal with a metastatic patient.

I think that was really an important evolution in this field, but The healthcare professionals, they are still holding a lot of stigma around metastatic disease. Perhaps not so much, for example, the three of us, we deal with it, we dedicate our research with it, but for the others that do not deal with it on a daily basis, for the ones that are not related to oncology, the stigma is still there by saying, Oh, it doesn't, it's not worthwhile.

It's still there. It's incurable anyway, so let's not take too much time. And for policemakers and politicians who take decisions, this stigma is there as well, on saying, I'm not going to invest in this group of patients. Because, The end will be the same anyway. And the fact that the commission has embraced this and looked with a positive outlook, my hopes is that this will change the minds of policemakers, politicians, and healthcare professionals to, to provide more opportunities for metastatic breast cancer patients.

Reshma: So I wanted to jump in and say that it, it extends to the very language that we use. We talk about patients having failed treatment. Clearly the patient hasn't failed. We have failed with our treatments. And there is a tremendous sense of isolation that develops and a sense of defeat.

And we have to be really careful about how we engage with patients and make sure that clear how much respect we have for them and how much we have to offer that, this is not suddenly a group that we turn our backs on, but this is the group that can benefit the most from what we have to offer.

Really again, drawing back on that theme of communication and empowerment understanding, we're all terminal. All human beings are terminal. No one I've known has gone on forever, right? So we're all going to die of something. But facing a diagnosis that suddenly puts into sharp relief some of those decisions about quantity of life versus quality of life about one's priorities that can occur with this diagnosis, and it can be an opportunity actually to really begin to live as well as to face our mortality.

So I think there is a lot of promise to the kinds of work that leaders in the field like Fatma and Felicia are doing here. And I will admit that I have focused much of my career to date on supporting communication and decision making for early stage breast cancer patients, and it's only since beginning the work on this commission that I now have a new big research project trying to develop a support tool for metastatic disease.

Felicia: I think we have to link this to the undervaluing of patients and the undervaluing of women. If I can share just a, brief anecdote I remember years ago when we were doing some work at Harvard on closing the cancer divide and, someone threw up a slide that showed where the cost benefit cutoff was for intervening.

And it was stage two. And I happened to be above the stage two line. I was detected around stage two with an aggressive form of breast cancer. So I was, relieved because there I was above the line and my colleague and friend who was sitting next to me walked out of the room because she was stage four.

So she was below the line. And her point was possibly just be presented in such a cold way that I wasn't valued as a human being because I, here I am below the line, but below the line has to do with the cutoff, but it also has to do with measuring the benefits All wrong. First, a lot of the patients who are metastatic, all but many, tend to live in low and middle income countries.

So they're poor and they're women. We undervalue them because they're poor. We undervalue them because they're women. So they're, below that cutoff line just because of where they were born, where they're living, the kinds of lack of access that they faced all their lives, the wrong reason to do that.

And then the other is that instead of thinking about this as a journey, which is what it is, we've been as Advocates, as patient advocates, really very pinked out around, cure and being a survivor. And our physicians talked to us about, you can hope for cure. Survivorship is a long process and sequela of the treatment.

But also we live for a long period of time, we may die of something else regardless of the treatment. being metastatic or not metastatic. And so I think we're pushing, and we heard this in the commission from the research that we did, even with some of the physicians, that we had to start talking about survivorship and not being a survivor.

And however many times they say, the minute you're diagnosed, you're a survivor. If you're metastatic and you're likely to die of your disease because you don't have access, it's very hard to say, I'm a survivor. We push women to say that all the time, in particular women, right? But it's a hard thing to have to swallow.

Survivorship is a process. It's a journey. We're all on that journey. And just lastly to say, this has a lot to do with how we've treated palliative care. And I've already apologized to Fatima more than once, and I'll continue to do because until I worked on the Palliative Care Commission I had tremendous fear, just as she described, walking into a room with micellar.

Patients with breast cancer and someone who was not going to survive is a very frightening experience. But it's all about thinking of what it means to support survivorship. And it's taken me, one of those Lancet commissions. It's good for research, but it's also good for keeping us on track in some kind of a way.

It forced me to rethink things and before I met Fatima in a very real way. 

Jessamy: What's something that we, anecdotally heard even at the launch was. Women coming up and saying, still stories of being silenced, not being listened to their symptoms to, not picking up symptoms of metastatic breast cancer, because they're being unheard.

They're being silenced, in a really retrograde and archaic way. So there's still a lot of work to do with that. And I wanted to just say on feedback, it's been about a month now since we launched the commission at the time. There was some feedback about some of the prevention aspects and the, I know that as a commission, there were many discussions about how we didn't want to put the onus on the individual woman.

We didn't want to put the responsibility on women, but still some of the press coverage. And I wondered whether you might briefly touch on that, but also just discuss your reflections now a month on any other feedback that you've received and, what your next steps are as individuals, but also as members of the commission maybe we start with you, Felicia.

Felicia: Yeah, again we were able and we're so grateful as the, this other commission on cancer and health systems that we could pilot a lot of the work that we want to do around the economics of hope for this breast cancer commission and also around how to rethink universal health coverage.

So those are two of the main topics we're taking up in the other commission. But, breast cancer is a very special kind of cancer for many reasons. But because their primary prevention aspects and all the way through, it is a nonlinear continuum through palliative care, through survivorship, we were able to really understand much better our economics of hope and much better Our broader idea of thinking of universal health coverage in the context of going across and diagonal ways in that continuum.

So we're continuing with that research. The Cascara survey was amazing at the commission under the leadership of Charlotte went much further than we had been able to do in some of the other pilot countries, which is right now Mexico, Peru India, and Uganda. So we're taking forward. Some of the work that I think we got further with in the UK, and we're going to learn more about hidden costs and about suffering in each of those four countries that we'll be able to, push out, we hope in, in this other commission.

That's where we're taking the research, but, just on Saturday I presented at a Precision Medicine Conference here at the University of Miami, and I pulled, dramatically. I think on what I learned from this commission, which again has a lot to do with metastatic disease and that fundamental reevaluating of women and human beings and what it means to think about less suffering and how that really increases the benefits to the individuals, but also across the board.

And then finally, in this idea of the co creation of health, which is, I'm hoping where health systems will go. 

Jessamy: Thanks so much, Felicia, for such a brilliant answer. Rashmi, maybe we'll come to you, we can do it, we go around and see there. 

Reshma: Absolutely. There's so many different ways that this work, I think, is influencing research, policy and practice.

One, one concrete way that I just mentioned was that, we are developing now more tools. tailored decision support tools focused on patients with metastatic disease. And we are also continuing to evaluate the impact of refinements to existing best practices and tools for communication with patients, including the ability to feed information about patient care.

Reported experiences and outcomes measures directly to their clinicians via a dashboard eliciting their values and preferences in ways that can illuminate discussions with providers and focus on the topics that will be of greatest yield to them. And make efficient use of the time that is so scarce as a resource in all healthcare systems across the world.

I do think that one of the most important innovations of this report was its focus on empowerment of women and how women are systematically overlooked. Of course, breast cancer does not affect exclusively women, but it does. does overwhelmingly affect women. And we know that women have been systematically marginalized in every society across the globe.

And so seeing this commission as an opportunity both to ensure that women's voices are heard and respected, that women are empowered and also to recognize the work we all have to do to remedy the system. That systematically devalue women is incredibly important and I do think this report has helped get that conversation moving forward as well.

Fatima: I totally agree and I will take two, two, two points just before I forget in picking up on what you said that it doesn't affect exclusively women. I think it was very useful that we were careful with our wording throughout the Lancet Commission about and not forgetting to mention the men with breast cancer that really feel isolated because they do have a rare disease and the disease that it's clearly associated with with females, so they are very much lost, even within information and communication specifically to them and I had feedback from some of the patient groups related with male breast cancer, and they were very happy that they were not forgotten, so it was a positive feedback on that as well.

I've been having some great feedback on again on the fact that it was an inclusive Lancet commission where a lot of groups that are not always highlighted have the opportunity as well as. Types of research that do not always have central stage, like research on suffering that Felicia developed and presented, as well as communication research, which is fundamental moving forward.

And it's true that most journalists will pick up on the. It's a very traditional wording of prevention and early detection. But I think what really differentiates this commission is that we went beyond that. We just, we did not stay there. We mentioned that because that is fundamental on every country, low, middle high income country.

But we went beyond that on things that can truly impact on patients lives and improve their lives. in some of the examples of The highlighted cases that we've given, I, I hope, and I had some feedback that they are serving as examples and that people will take them and try to develop similar research in their own countries.

I'm thinking, for example, of what we showed case of the work done here in in Lisbon on the right to work on the impact of changing the laws to allow people with metastatic disease or people with cancer overall to work, to continue to have a job, a career, and how much that would be of great value to them and to society.

And we have developed this model to calculate how much even governments

And I've been receiving feedback of people from other countries that want to apply the model in their countries to show their governments how much they would benefit in changing the laws, allowing people with cancer in general to have flexibility at their work. Thank you for your time. And continue to have a profession and a career.

Felicia: Something that I think both Reshma and Fatima are speaking to, which is that, typically when you have work on breast cancer, we are heavily advocating for our breasts. But in this case, what we're seeing, I think it's maybe the first time that the courage is there to say the work on breast cancer, the breast cancer movement can be thinking beyond our breasts and can be thinking to empowering the voice of women, but empowering the voice of patients overall and all individuals.

That message has been a message has been very difficult to give. To the advocacy community. And I think what we've done is until this commission, lost the opportunity to be able to contribute beyond our own disease. And the more we survive, the more we're going to need that other, those other kinds of empowerment around other kinds of healthcare.

So this breaks new ground in that sense. It's very courageous.

Gavin: I think that's very important. I was going to follow up from Fatima's point to ask just for our listeners, perhaps we could briefly discuss what some of the laws that could be changed are to unlock these extra kind of economic opportunities. 

Fatima: In terms of employment what we are asking is, It can be summarizing the word flexibility.

This means that people are both with early and metastatic disease, they are able to continue to work most of them, but they need people to be flexible. They might need to adapt their tasks. They may not be able to perform the same tasks as they were performing before and have to adapt because of either physical or cognitive limitations.

They also need flexibility in the, in timing. What I, what that means is they may. Not be able to work one day, but compensate on another day, they may have to take some days to go for treatment or two appointments, but they can compensate on the net the other day, and they can also use teleworking and I think the pandemic, at least open up the eyes of everybody, including employers that you can still be productive by using.

Being away from your place of work, but still continue to produce. And I think what happens in the majority of countries is either the law does not allow that, or for example, in Portugal, it says it is possible, but it needs the approval or the employer. And if the, it requires the improvement, the approval of the employer without any financial incentive.

They are not going to do it, right? They will hire someone who has no limitations. 

Felicia: To build on that the other, and this goes back to yet another Lancet Commission on Women and Health that was led by Emma Lunger the, I think it's worth saying something about the message here for laws around leave and caregiving.

For decades we've argued for the right to maternity leave, but if you only have maternity and not paternity, then you end up not hiring women because. It's cheaper to hire men, but we now are seeing a world of epidemiologic transition, of aging, where we need laws that offer space for caregiving.

That means leave from work paid leave from work, but that has to be genderless or gender transformative, because it has to be a right that we need in aging societies, but That is a right that all people have. Now, all of this though works in societies where we're talking about a so called formal sector or a salaried workforce where you can enforce this kind of leave in that way, what we're.

I want to see though is a transformation towards just like national health insurance, national social insurance, where regardless of where you work, or if you have work, you have the right as a member of a society, a country, a community, a nation to these sorts of fundamental issues. Opportunities to invest in making our communities healthier in, in so many different ways.

And I think we speak to that from this commission understanding it from the view of breast cancer, but it's a much broader point. 

Reshma: I'll just throw in that in the United States, the National Academies of Sciences, Engineering and Medicine came out with a landmark report that was launched just the week before the Lancet Commission.

I will admit that I was actually a part of both of these, and when I started working on both of these commissions, and they both, lasted for two or three years of work that went into this I did not think that they would launch within a week of each other and have so many complimentary themes.

But as Felicia just so ably articulated, the need for us to recognize that caregiving for loved ones is something that is not simply an individual choice and responsibility, but is actually a shared societal need and responsibility. In order for us to have an equitable and thriving economy, we need to accommodate this with real changes to policy.

And I'm ashamed to say that the United States is the furthest behind of any of the high income countries that we looked at. 

Gavin: I think those are really important points. We've talked a lot about patient empowerment and communication throughout this. I wanted to ask how this links, patient empowerment and communication links to other cancers and pathologies.

Reshma: I can start with that one. The report actually contains a really nice framework for how healthcare professionals can engage with patients. with patients in partnership to make sure that they're able to define and articulate their goals of care understand their condition and their options and the availability of those options in the local context.

And so the framework starts with building rapport and checking understanding. It moves on to, the, Healthcare provider setting and negotiating an agenda for the consultation visit, sharing information, conveying respect and empathy, making sure that there is a review and summary and agreement on next steps.

And these are general skills that can be applied far beyond the setting of a, of a. breast cancer consultation, right? And I think what we discovered in some of the survey work that we did was that healthcare professionals are remarkably confident about our skills as communicators remarkably untrained in this incredibly important skill, and that Our perceptions of ourselves, in terms of our efficacy as communicators doesn't necessarily line up with what we hear from patients about their unmet needs for communication.

I think this is a far broader consideration than one related to this one condition alone and I do hope that some of the principles that were emphasized in the report will be extended to other settings as well. 

Felicia: I can build it. I think that speaks so well to this idea that we're trying to explore and then translate into a metric, which is the alleviation of suffering.

So we're never going to understand a patient or a loved one suffering if we don't ask them about that suffering. And in this particular report, I was just amazed because as a patient, I knew this, right? But I didn't realize that so many providers didn't understand. that for many people with breast cancer and many other cancerous diseases, we care a lot about sexual health.

We care a lot about social stigma. We care a lot about fertility, depending on our age, and those sorts of issues get wildly ignored. But if you just listen to. A person who has this disease or almost any other, you will hear what is generating their suffering and so much of it could be alleviated in ways that are really not that costly.

Some are, but some aren't. And they're often not talking about extend my life for a week, please. They're speaking about being able to live in certain ways, manage treatment in certain ways, have opportunities with their families, be able to interact in the workplace, continue to work. Some very basic things that we can change in a number of different ways.

So just what Roshan said speaks so, I think, eloquently to why we need to hear about patient suffering to figure out how to alleviate more of it. 

Fatima: I think I would just compliment that with saying that most of what we say is tackling Not the breast cancer, but the person with breast cancer and the person with breast cancer has needs that is very similar to the person with prostate, with colon, with lung cancer.

And of course we need. And I don't know, I don't want all the listeners to think that the three of us are not very focused on research, on advancing new treatments, on early detection. We are, but all of that needs also to find the patients. And sometimes, the blockbuster drug only targets about 5 percent of all the patients that would need it.

Because of all the inequalities, or it only targets 10 percent because it's so directed and so targeted. to a specific target that it doesn't cover the entire population that has the disease. But all the other needs, the need as a person, they are fundamental to everybody. And so what we hope is that also people who work in other areas beyond breast cancer also find important information that They can take from this commission and apply in for all the patients who have cancer all over the world 

Gavin: Thank you vitima.

It's been a genuine joy speaking with all three of you before we go. Is there Anything else, that any of you would like to mention perhaps about your experiences working on the commission, you know Anything you've learned along the way. 

Felicia: Let me just jump in and say that Working with Professor Dr.

Charlotte Coles was incredible. So I worked on a lot of commissions and I have nothing bad to say about any of them, but I do have something very good to say about this. She is like a natural commission leader. So I don't know if that means that she wants to do any more of these, but I have to say she did a phenomenal job including of Thinking globally of low and middle income countries, of listening, of hearing us all, and of bringing us together, it was a real joy.

Working to put the pieces together, she did the vast majority of the hella lifting with her team, and I'm really indebted to her. For teaching me how to better lead a commission like this, but also for everything she's done for research and for patients like myself. 

Reshma: I think that Professor Cole's leadership, actually, her style was exactly what the scientific evidence on how to improve collective intelligence suggests might be effective leadership style.

She was incredibly. able to make sure that every voice was included. She continued to reach out to encourage more and more contributions from groups that might have been overlooked in the beginning. And I think that diversity of perspectives really enriched the ultimate product.

Really grateful to have gotten to know so many people who I have long respected and now feel will be lifelong friends, which is great. Yes, just 

Fatima: echoing everybody's comments, it has been a pleasure to work with Charlotte and actually with everybody because we really, I think we came from so many diverse geographically and expertise wise.

I learned so much on all the discussions that we had and came to realize that no matter where we leave, most of the problems are common. And so we can only thank the Lancet for bringing us together and Charlotte for keeping us on track and all everybody contributed to this Lancet commission.

Gavin: It's been a pleasure for me to spend this time with the three of you discussing such a vitally important topic as well. And I hope our listeners have enjoyed the conversation. As much as I have, but Felicia, Reshma, and Fatima, thank you so much for your time today with The Lancet.

Thanks so much for listening to this episode of The Lancet Voice. If you're a researcher, you might be interested in our In Conversation With podcasts, looking at specialty fields of research that correspond to our wide portfolio of Lancet journals. You can find them wherever you usually get your podcasts.

Either way, thanks from just me and I for listening, and we look forward to seeing you again at the Lancer Voice soon.