Episode 4: Understanding the Cost of Care

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In this episode of ASCO eLearning's Social Determinants of Health (SDOH) series, Dr. Hala Borno (University of California San Francisco) moderates a discussion with Dr. Fumiko Chino (Memorial Sloan Kettering Cancer Center) on understanding the cost of care and ways care providers can help patients and caregivers mitigate financial toxicity.

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TRANSCRIPT

[MUSIC PLAYING] SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Welcome to the fourth episode of the ASCO Social Determinants of Health Series. I'm Dr. Hala Borno. I'm an Assistant Professor of Medicine at the University of California, San Francisco, and a genitourinary urinary medical oncologist. I have the pleasure today of being joined by Dr. Fumiko Chino, who's a radiation oncologist for Memorial Sloan Kettering.

This series is part of a new initiative proposed by ASCO President Dr. Lori Pierce, focused on increasing oncologists understanding of social determinants of health, its impact on patients, and modifiable risk factors for cancer. Inspired by Dr. Pierce's presidential theme of equality every day, every patient, everywhere.

In this episode, we will look at issues of financial toxicity and related barriers to cancer care. Again, thank you Dr. Chino for joining us today. First, I thought I would ask what do you consider to be financial toxicity and how can it be a barrier to access to care.

FUMIKO CHINO: Thank you so much for having me. I am very passionate about this topic. I have dedicated my life to it. And it's actually the reason why I am in medicine. I think financial toxicity is a very-- it's a hot topic nowadays, especially with the rising cost of cancer care and then I think highlighted by the COVID pandemic.

But financial toxicity is really a patient-facing problem, meaning it's how patients deal with the cost of their cancer care and how that affects the quality of their care, their access to care, and ultimately can affect their survivorship from cancer. Personally, interested in it because of my own experiences with financial toxicity. And it's really the reason why I ended up in medical school at all.

I think realistically, it's like the old adage where you haven't-- unless you ask about a problem, you're not going to identify it. And from my own experiences, I know that there are patients that you will see in your clinic that are having problems with financial toxicity, but they won't necessarily talk to you about it until they're given permission. And so I think this topic is increasingly important. And it's something that I'm really happy that we're spending some time with today.

HALA BORNO: Dr. Chino, thank you again. You really have been quite open about your personal experience, a very powerful experience to highlight this critical problem. Do you mind sharing a little bit about that story. And how does that impact the way that you interact with patients in your own practice and also inform your research?

FUMIKO CHINO: I think that my story, my husband's story, and ultimately our struggle through the health care system really highlights a lot of what this whole issue is about the social determinants of health. And I think the lens I bring to it is someone who's been on both sides of the stethoscope so to speak.

So my husband was diagnosed with cancer at a very young age, when he was in his 20s. And unfortunately, we dealt with some very poor quality health insurance, which did not have a lot of coverage for cancer. And we had a lot of out-of-pocket expenses for care.

Ultimately, I had to quit my job to help take care of my husband. And when he died from cancer, when he was less than 30, it left me with an incredible burden of debt related to his cancer treatment.

I think the flip side of the access problems, in terms of insurance, is that I have a very privileged background. Unlike a lot of patients with cancer and families with cancer, I am from a pretty wealthy family. So I was able to rely on the support of my family to help me get me back on my feet. And even, again, when we are suffering these great costs, we had people who could loan us money.

And I think that privilege that we had really helped us stay at least minimally afloat with our struggles with financial toxicity, instead of completely going under. And I think that really highlights some of the disparities that for patients that don't have wealth in their family, or people that they can rely on to loan them money, or flexibility within their jobs, financial toxicity of cancer treatment really hits them so much harder.

HALA BORNO: Yeah, that's certainly a really powerful experience. And I do in a moment want to hear how that informs the research questions you ask, but I do want to first highlight that you brought up two really important points.

So the first point is this notion of coverage, where access to insurance doesn't necessarily mean access to affordable insurance. And that this issue of cost sharing and out-of-pocket costs that patients bear can be quite burdensome and compromise their circumstance. And I think your story certainly highlights that.

The other piece that your story highlights is this notion of wealth versus household income and how different individuals enter their cancer journey from a different circumstance. And that circumstance of wealth versus household income can have huge ramifications on their experience of financial toxicity. So I think that that's a really critical point to make.

Could you share a little bit about how that experience now has become really the cornerstone of the research questions you're asking in your academic career? And then have you carved out certain solutions to identifying these among patients that you're seeing?

FUMIKO CHINO: I think that the experience that we had in terms of navigating the health care system, and the obstacles, and the rat race that cancer care treatment is for everyone, especially coming from a background of having-- a high educational and a family in medicine, and just how difficult it was for us really highlights for some patients how it can be insurmountable. And these problems of access, or even getting the right diagnosis.

So my husband was given, I think, three false diagnoses before he was actually told he had cancer. And then from cancer, he was originally told he had non Hodgkin's lymphoma. And he ultimately ended up having a high-grade neuroendocrine carcinoma.

So realistically, those barriers to even getting the right diagnosis are even worse for patients that may have a lower education standard or may have built-in racism within the system, which is holding them back from being able to trust their health care team and being able to get the proper diagnosis and the proper treatment for their care.

I think our experience has really focused me on trying to think about highlighting the populations that really could benefit the most from an intervention, and then piloting specific interventions that may actually help people receive the high quality, high value cancer care that everyone really deserves. I think within the United States, we are-- we like to think of ourselves as being leaders. And I think that to call ourselves leaders, we need to lead.

We cannot live in a society where a quarter, a third of our patients are really suffering huge burdens related to the cost of their cancer care. In highlighting a little bit about what you said before about wealth, we already know that, for example, Black families have one tenth of the wealth that white families have in the United States. There was a really compelling Brookings evaluation of that.

So if you think about just the out-of-pocket burden for cancer care eroding wealth, what we're talking about with financial toxicity is something that can really be durable within families. So not just eroding the financial security of a patient, but also potentially compromising the educational success of their children or causing housing instability within the family. That affects the entire family unit.

So thinking about these issues are really what has galvanized me to consider what are the next steps to actually getting people the care that they need in a facilitated way. And I think-- again, not to bring up COVID again, but that's really highlighted the gaps in the US health care system and the patients that are disproportionately affected by burden.

So if you think about someone who has now potentially lost health insurance, or does not have the job flexibility, or paid sick leave to deal with a cancer diagnosis, we're talking about an entire group of patients that are now going to have even worse cancer outcomes.

And we know that, for example, patients that do have-- the working poor, actually, those with essentially borderline private insurance, that they really do suffer the most in terms of financial toxicity in terms of their out-of-pocket costs, and their coverage gaps in terms of-- what their insurance insufficiently covers in terms of their cancer treatment are the highest.

And that's really, in terms of the people to really think about how do we help them, how do we get them the care that they need, that's really what I'm most interested in pursuing.

HALA BORNO: Really important points that you brought up. I think we can't ignore our context, the COVID context. And certainly, this current pandemic has shone the spotlight on the relationship between disease and our financial circumstance and in a variety of ways.

And so I think it emboldens us to understand and to evoke change in our clinics, in our health systems, in our communities to have conversations around financial toxicity and the relationship between financial toxicity and cancer care. And also emboldens us to start operationalizing, assessing patients for financial toxicity.

So when I have conversations with my colleagues and done my own research in this space, I've observed that clinicians often feel ill equipped to manage issues and problems around financial toxicity that they may identify in clinic. And, of course, when you feel ill equipped to navigate a problem that you identify, it may, of course, make you reticent to even identify it.

And so what are some potential solutions that our colleagues who might be listening to this may be able to take with them in their clinics and practice in order to start unpacking and addressing this problem?

FUMIKO CHINO: No, I think that's a really good question, because I think that's the most common concern that I have from providers when I talk to them about financial toxicity. And I am so pumped in terms of like we need to address it, and we need to be asking patients.

And it's funny, we did a survey of our patients-- this is actually before COVID-- to ask about some things that would actually help their financial situation related to their cancer care. And some of the solutions were honestly very, very basic.

Minimizing wait times so that people could actually get back to work and not have to take a whole day off of work. Having a food or a snack in clinic so that people would be able to actually get some food in them so that they could maybe go back to work. And I think MSK has really highlighted the idea of having a food bank embedded in certain clinics to try to help with food insecurity.

Providing things like parking vouchers, or bus passes, or metro tickets to patients to try to help with transportation. Really basic, fundamental access problems. And I think that the larger issues, outside of just the mechanical issues, is that to realize that we are part of a multidisciplinary team.

I would never treat someone-- I'm a radiation oncologist, I would never just start zapping someone without talking to the medical oncologist, and potentially also the surgeon, to really think about, well, how do we coalesce a good treatment plan for someone.

And I think you can really think of financial toxicity in a similar way, which is we need to bring in all of our potential assets. We really need to think of our assistance within social work, or the social work team, or patient financial services to really rally all of the available resources for our patients.

And I think the thing I would say is that we can lower costs for patients. We can't necessarily lower them to zero. And we can't lower them for every single person, but we can really make a meaningful difference. And it's a matter of getting people the help that they need or sometimes just that little bit of-- I'm going to miss my rent this month-- a little bit of philanthropic funds that can actually tide them over so that they don't fall into a larger hole related to their cancer diagnosis.

The study that I quote most commonly is actually one by Reshma Jagsi from the Michigan group, which found that 1 in 20 Black or Latinx women who are treated for in early-stage breast cancer actually became housing unstable related to their treatment. So they had in early-stage breast cancer, totally curable, totally treatable, and yet ultimately ended up homeless related to the cost of their treatment.

And you cannot help but think that some of that would be preventable if we could just provide people with some acute assistance when they're in need. And again, rally all of the resources around them. And it's not just social work and patient financial services. There's a national initiatives to try to think about how do I lodge patients during their cancer treatment from, for example, the Hope Lodges?

How do I get them to their treatment so that they're not paying for taxis, or they're not trying-- they don't have a car, so how do they get to their radiation treatments? Or how do I rally philanthropic funds to think, well, what about that extra $300 I just really need to pay my light bill?

And there are resources. They're not again infinity resources. But they can actually help our patients. And we just need to facilitate them getting them.

HALA BORNO: I think that's an incredible point. I think what I'm hearing from you is, why don't we look within our own clinical environment, the way that we deliver care, and identify areas that generate burden and areas that could be streamlined? Because while there are some opportunities to address indirect costs associated with care, such as travel, lodging, and there's a lot of innovation in that realm, this notion of economic opportunity loss.

The loss of wage as you receive care is difficult to measure, not measured operationally, and can be quite burdensome. And so if we streamline that health care delivery experience, perhaps we can start addressing the costs that we're making our patients bear in order to receive care. So I think that's a really important point.

And it brings me to a question, is we all acknowledge in the era of COVID-19 there has been a rise in utilization of telemedicine, which may be addressing a lot of these different issues around receipt of care, parking, travel time, waiting in the waiting room. Do you-- tell me a little bit about how you've thought about that approach. And do you think that it's a solution that we should be carrying forward in order to address this notion of financial toxicity?

FUMIKO CHINO: I think that we were all forced to rapidly implement telemedicine because of COVID-19. And I think one of the few benefits of COVID was that it forced us to really think about what are the barriers to telemedicine? What are the potential ways to deliver high-quality, high-value cancer care from a distance? And how-- what are the real true assets and potential risks of that?

And we, actually, within our own group, just recently published something in JNCCN. And specifically my question about the role of telemedicine was, how much was it actually saving patients? And the majority of patients did say, you know what, telemedicine helped. It helped reduce my treatment costs.

I think the flip side of that is that we know that, based on some research that's already been presented, at least in abstract form, that telemedicine has not been rolled out evenly. And so that there are potential racial, ethnic disparities, and socioeconmic disparities in terms of the capacity for someone to get a telehealth appointment to feel that is a trusted conversation and to have just the-- again, the technical capacity, video phone, Wi-Fi, to actually get telehealth in.

So I think that telehealth does present some really good opportunities to improve value within cancer care and to increase affordability. But the pitfalls, I think, are also true, which is that we can't just say, oh, well this is great, everyone I know has an iPhone, so I'll just Facetime all of my patients and neglect the patients that are really struggling.

They don't have Wi-Fi. They're not able to have a fast connection. They're not able to hear you. And they would really benefit from an in-person visit because communication may be a difficulty or trust may be a difficulty. And those are patients that, again, we need to tailor our interventions and make sure that we're using the right tool for the right patient.

The implementation of telemedicine is like precision medicine. We need to actually deliver the best care for the person who's in front of us. And it's not one size fits all.

HALA BORNO: I absolutely agree. I think the social determinants of health, integrated precision medicine, how do you individualize your intervention is key. And if you do use this one size fits all approach, you will likely widen the treatment gap in who we are serving. So I absolutely agree with that. And I think your points are well taken.

I think for our listeners, I really want there to be a tool that they can use in their own clinic as they interact with patients. How do you approach this with patients in your conversation? What is a takeaway that they can have that they can carry with them in their clinical practice?

FUMIKO CHINO: I think that drawing from my own experience and realizing that we were suffering greatly from our cost, and yet afraid to speak about them to our provider, just realizing that sometimes patients just need the OK. So they need you to ask them, are you having problems related to the cost of their care.

And then, you do need to have some small investment, at least, in terms of knowing what the resources are available. And that could be a simple conversation with your patient financial services group or your social work team, and know what resources are available within your own institution.

I think, shockingly, we found that we have great resources here at MSK, and we also have patients who are really suffering. And yet, there's this disconnect, where patients are not being appropriately referred to the resources that we have. And they're suffering in silence. Patients aren't bringing up the topic. Providers aren't bringing up the topic. And so there's this missed opportunity to actually provide the best quality of care tailored to that patient.

So just asking the question and then knowing what potential resources are available, even something as simple as a parking pass. Like, hey, do we have parking passes that we can give patients? You'd be surprised how much that-- just a small piece of paper-- it's 20 bucks-- can really make a difference to some of our patients.

Or even asking, how do we coordinate your care so that you can have a minimal amount of time off of work? How do we facilitate you actually maintaining your health insurance through your job so that you're not worried about not just the lack of health insurance for you, but also for your young kids?

How do we maintain your job related to your-- I again treat with radiation, so it's a daily treatment, typically for a period of weeks. How do we treat you at the right time of day, so that you actually don't have to take more time off of work? So that you actually have income coming in to offset the debts in the bills that are then-- because if you just have debts and no income, it digs you deeper into a hole.

So I think all of these things are part of, again, this idea of precision medicine, which is not necessarily next generation sequencing, but actually generating the right plan for the person in front of you. And I think the first question is always just asking.

HALA BORNO: Absolutely, precision medicine isn't just about genomics and targeted therapeutics. It's also about identifying the unique challenges of patient experiences. And I think you've given me a lot of lessons about what I can carry in my own clinical practice. And hopefully, that can also have a ripple effect on other listeners today.

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Thank you for joining us for this episode of the ASCO "Social Determinants of Health" Series. To keep up with the latest episodes, please click Subscribe. Let us know what you think about the series by leaving a review or by emailing us at professionaldevelopment@ASCO.org.

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