How Healing Works with Dr. Wayne Jonas

Exploring Financial Toxicity in Cancer Treatment and Whole Person Care

• Dr. Wayne Jonas • Season 2 • Episode 13

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Summary
Dr. Wayne Jonas and Dr. Ray Wadlow, a gastrointestinal oncologist specializing in pancreatic and gastrointestinal cancers, discuss the topic of financial toxicity in cancer treatment and its impact on whole person care. They highlight the need to address the financial harm that patients may experience during cancer treatment and the adverse effects it can have on their wellbeing. The conversation emphasizes the importance of listening to patients, asking questions about their individual context, and proactively addressing financial toxicity in cancer care. Financial toxicity disproportionately affects communities of color and there is a need to measure social drivers of health and assess targeted interventions.

Takeaways

  • Financial toxicity refers to the adverse effects experienced by patients due to the cost of their cancer care.
  • Addressing financial toxicity is an essential part of whole person care and can significantly impact patient wellbeing.
  • Healthcare providers should ask questions and listen to patients to understand their individual context, including financial stressors.
  • Efforts should be made to increase awareness of financial toxicity and develop tools and resources to help patients navigate the financial aspects of cancer care.
  • Measuring social drivers of health and assessing targeted interventions is important.
  • Collaboration with other healthcare professionals and organizations can help identify resources and support patients in mitigating the financial burden of cancer treatment.

Chapters
00:00 Introduction to Financial Toxicity and Whole Person Cancer Care
09:28 The Importance of Addressing Financial Harm in Cancer Care
16:07 Mitigating Financial Toxicity: Frameworks and Resources

Resources

Check out the book: "Healing and Cancer: A Guide to Whole Person Care"
Visit https://www.healingandcancerbook.com/ for more information.

Connect:
Twitter: @DrWayneJonas
Facebook: Dr. Wayne Jonas
Instagram: @drwaynejonas
LinkedIn: Dr. Wayne Jonas
LinkedIn: Alyssa McManamon

Visit Healing Works Foundation www.healingworksfoundation.org for more information.

Dr. Wayne Jonas is a board-certified physician and Dr. Alyssa McManamon is a triple-board certified hematologist/oncologist. The opinions expressed on this show are those of the hosts and guests and do not necessarily represent the views and opinions of their places of employment, the Department of Veterans Affairs, or the United States government. The opinions expressed on this podcast are meant for entertainment and education and should not be used to diagnose or treat any medical condition nor should they be used as a substitute for medical advice from a qualified, board-certified practicing clinician. Dr. Wayne Jonas and Dr. Alyssa McManamon have no relevant financial disclosures.

Please note that this transcript is produced electronically and may not be an accurate representation of what was said. It may not be reproduced, edited, altered or modified in any way without prior written permission. Any use of quotes or excerpts from this interview requires explicit permission from Healing Works Foundation. Please contact us at healing@healingworksfoundation.org if you would like to use any part of this transcript for quotes or other purposes.

“How Healing Works with Dr. Wayne Jonas & Dr. Alyssa McManamon”

Exploring Financial Toxicity in Cancer Treatment and Whole Person Care

Wayne Jonas (00:03.91)

Welcome to How Healing Works. I'm Dr. Wayne Jonas. Today we will be exploring the topic of financial toxicity as it relates to cancer treatment and as it is part of whole person cancer care. My guest Dr. Ray Wadlow is a gastrointestinal oncologist who specializes in pancreatic and GI cancers at the Inova-Schar Cancer Center in Northern Virginia.

Dr. Wadlow is a member of a group called the Integrative Oncology Leadership Group [Collaborative] for a couple years, and he offered advice on how to do whole person care and also how to help patients navigate financial harm that sometimes comes along with cancer treatment. He also helped us put together a pocket guide on financial toxicity that's on our website. Ray's had wide experience in cancer care, from training and research at UVA and Dana-Farber

to years in community oncology. So from the lab bench to the bedside, as they say. He also leads a fellowship training at Inova and also a center for prevention and screening, and is the PI on a major study on pancreatic screening and detection funded by, I believe, the DOD or the NIH, or maybe both in those areas. So welcome, Ray. Thank you so much for being my guest today.

Ray Wadlow (01:24.238)

Thanks, Wayne.

Wayne Jonas (01:26.806)

So I like for my listeners to know the person I'm talking with a little bit better. I mean, I just described what you do now and kind of some of the journey you've been through, but how did you get there? What were the drivers in your life, first of all, to become a physician and then to go into oncology and then to go into, you know, the various experiences that you had and what you do now at Inova Schar?

Ray Wadlow (01:53.71)

Sure. So as an undergraduate at Dartmouth College, I was focused on the humanities and I was an art history major. For a while, I thought I would eventually apply to go to law school. My mother at the time was a freelance writer. She wrote a lot about the legal profession and she was married to my stepfather, who was the chief of cardiology at the University of Virginia.

She really convinced me that my interest in the humanities was actually very well aligned with a career in medicine. I mean, obviously, the sciences were going to become an increasing part of my education if I chose to pursue it, but she was the first one who helped me understand that, and my stepfather as well, the two of them together, that the marriage of art and science and medicine was really a unique opportunity that I might be well suited for. 

And so I began to take the pre-medical requirements and I really enjoyed them. I spent the summer after my third year in college taking rapid pace organic chemistry in Charlottesville, UVA to catch up. I took a year off after college working in Boston as a clinical research coordinator at Massachusetts General Hospital and my stepfather helped me get that job in the cardiac unit. And then I went home from medical school to UVA

and really thrived, really enjoyed it, was very serious about my studies, about learning to become a physician, and thought that I was going to be a cardiologist, like my mentor, stepfather, George Beller. When I got to residency at the University of Pennsylvania, as much as I was enjoying my cardiology rotations, I really fell in love with oncology as a medicine resident.

Exposure to oncology is often skewed to the sickest patients or patients at their sickest when they're admitted to the hospital and hematologic malignancies like acute leukemia that are often treated with aggressive inpatient chemotherapy and stem cell transplantation. And I really liked that. I thought it was amazingly interesting, fascinating. So I worked with a mentor. And then as a junior resident, my mother...

Ray Wadlow (04:13.482)

was diagnosed with advanced pancreatic cancer. And I knew enough to be involved in her care, but as a medicine resident, I also was learning a lot, of course, in a scenario that I didn't want to be in. I spoke a lot with her oncologist at UVA, who has remained a close friend and a mentor to me over the years. And I realized as she went through her cancer journey, she died after about 18 months

working simultaneously as a state senator for the University of Virginia and then as the Democratic Party's candidate for lieutenant governor before having to drop out of the race, that oncology was going to be my field. And I think this is a very common story. Almost everybody is touched by friends and family members who've had cancer, and it's a huge motivating force for a lot of people. 

So I went on to my oncology, hematology oncology fellowship at Massachusetts General and Dana-Farber Cancer Institute in Boston. And when I finished my clinical year, this was a highly academic program, they encouraged all of us to spend some time in a laboratory. And unlike a lot of my co-fellows who had PhDs or backgrounds in laboratory science, I did not. I'd done some clinical research as a medical student and as a resident

but I thought it would be a great opportunity to get my hands wet. And so I interviewed a bunch of, and was interviewed by a bunch of laboratory investigators in the Harvard Medical School system, and I worked with a physician investigator named Sridhar Ramaswamy, who, this was around 2003, at that time was at the cutting edge of genomic profiling of tumors

and was asking very relevant clinical questions. And so I went into his lab and I learned a lot about scientific investigation and basic laboratory techniques. And we studied how cancer cells interact with the other cell populations within tumors. And I spent five years doing that and really enjoyed it and have no regrets whatsoever. But at the end of that time, although I was sort of achieving some of the benchmarks that were required to continue on.

Ray Wadlow (06:35.666)

I realized that it was going to be very difficult to pursue that kind of career and to also provide clinical care for patients with disease. And so I made the difficult decision to leave the lab, and I was very fortunate that there was an opportunity to work as a clinical gastrointestinal oncologist and a clinical investigator in the MGH (Massachusetts General Hospital) Cancer Center. I did that for two and a half years and just had an amazing time. As you might imagine, the...

getting back up the learning curve after five years in the lab was steep, but I had a great group of colleagues. And then I moved to Northern Virginia in 2011 for a variety of reasons and took a job with a large community practice in the U.S. oncology network here, Virginia Cancer Specialists. And although I was the gastrointestinal cancer person, as a community oncologist, I had to see patients with all kinds of cancer and blood-related disorders.

And we were seeing patients five days a week, all day, every day. And honestly, Wayne, at the end of, by the time I'd been doing this for eight or nine years, I started to burn out. It's very difficult to do. I do have colleagues that thrive and do it very, very well. But I remember I had spent time training and becoming a very focused, disease-specific oncologist in GI oncology. And so I sort of felt like I was able to offer

my patients with GI cancer is one level of care, but for everybody else, I was simply trying to figure out what to do on the fly and do the best I could and offer the standard of care, which we did and I was supported, but I also missed the opportunity to be involved in research and teaching. And so again, it was serendipitous, I was very fortunate when in 2020, I was given the opportunity to join the Inova Health System, focusing again exclusively on gastrointestinal oncology,

given the opportunity to start a new fellowship training program for physicians who had completed their internal medicine residency and were seeking training in hematology-oncology and given some funded protected time to pursue various avenues of research that I was interested in. And I've been doing that for the last four years and it's been a really wonderful rejuvenation of my career, mid-career sort of renaissance, if you will.

Wayne Jonas (08:59.418)

Right. Wow, what a journey you've had. And, you know, starting with realization, as medicine is, that it's a combination of art and science. And so often, as the science overtakes things around the tumor, and increasingly, though, we have science also that talks about the importance of applying the art, of actually taking care of the person outside of the tumor. And that's sort of what whole person care is about.

And you know, what we need, we're realizing we need to do better at and do more of if we're truly going to take care of people who have cancer. And so your wide experience, starting from early life and the mixture of art and science all the way to, you know, the laboratory, the bench to the bedside, as we say, is great. So, whole person care involves a lot of different things. And I know you and I have talked about this and even shared patients in some cases.

However, there's one part that just sort of people don't, they don't see it as part of the care of the full patient, but it is often and it's often hidden. And that is the fact that these treatments are very expensive and that they're not always covered by insurance. And when you get into the, you know, the care of cancer, sometimes people get hit with

bills, medical bills, that produce toxicity. And they now have a term for it, I think, financial toxicity. Could you talk a little bit about what that means? It's sort of an unusual combination of words, financial toxicity.

Ray Wadlow (10:41.614)

Sure. So I think financial toxicity refers to adverse effects experienced by patients due to the cost of their care. And as you point out, care in healthcare in general, cancer care in particular, has become extremely expensive and a lot of it is not covered and even when it is covered, cost is still passed on to patients in many respects. And those costs need to be addressed and balanced by the patient, and that is often a source of stress that can take at times an extreme toll on the mental and physical wellbeing of the patient. So it is a key component and driver of...

the individual patient's overall wellbeing, and it needs to be considered as part of whole patient care because if it's neglected in conjunction with the rest of whole patient care, everything else we do that is targeted at treating a disease like cancer can be completely for naught.

Wayne Jonas (12:02.846)

Yeah, I think there's quite a bit of data now showing that it is quite widespread. Medical costs are one of the major causes of bankruptcy in the nation. And often both the patient and the clinician are surprised, you know, when the bill shows up, right? They actually don't know that these things are going to happen. So how do you address that in practice? I mean, is this something you routinely bring up and ask patients about and talk with them before they engage in their treatment?

Ray Wadlow (12:38.366)

Increasingly, yes, I mean, it's mandatory. As you bring up, patients with cancer are over two and a half times as likely to declare personal bankruptcy as age, sex, and zip code matched controls. We know that personal bankruptcy in patients with cancer is associated with an 80% increased risk of death. The mechanisms by which that happens are still unclear, but presumably include a lot of deferment of care, simply not

accessing the medications and the treatments that are prescribed. I think, you know, as this was just not really addressed during my training. And so to answer your question, the first step has been education and awareness. And then at the level of the individual patient encounter, it always starts by seeking to understand and asking questions. So when we're teaching our fellows...

whether it's in the context of individual patient encounters during clinic or in the hospital or the more formal didactic curriculum we've designed for psycho-oncology and whole-person care, the message already is first, listen. Ask questions as sort of conversation starters and prompts for the patient and then listen. And you're not simply trying to understand

what their disease is and what the best treatment is going to be based on that disease, but you need to understand individual context. So I ask questions about what people do for a living. Are they retired? Are they working? Do they have dependents? Who is in their home with them? Who comprises their social network? What are their financial stressors? And of course, all of that takes time. But I've learned that I can actually accomplish more

by asking a few important questions and then listening and talking less. So there are sort of curves that you can climb for efficiency. We need more time and we can talk a little bit about incentives and compensation models to sort of address some of these things that are not part of the system, although changes are being made.

Ray Wadlow (14:49.814)

But there are tools and things that I have learned over time to allow me to address this. And I'd say the biggest thing is by asking those questions at the beginning and going from there..

Wayne Jonas (14:58.806)

Yeah, no, that's fantastic. I think at the last American Society of Cancer meeting, keynote, Eric Weiner talked about the importance of taking care of the person and incorporating some of those conversations into the care of the patient and the care plan. And he said, the biggest challenge is time. And then he said immediately, but you have to take the time. Because if you don't take the time now

then you're gonna take the time later, but it may be even more complicated to deliver, especially if you're not getting a treatment that results in an 80% higher likelihood of death. That's a pretty big chunk here. And so that means that's almost essential for conversations at least to detect in those areas. 

So let's say you find somebody that really is gonna run into trouble for paying for this care. Are there things that you can do to help them, maybe even proactively or even after the fact, help mitigate or offset this? What advice do you give them when you find them?

Ray Wadlow (16:07.374)

All right, so I think it goes a long way when I simply, the patient appreciates that I'm simply seeking to understand by asking that question. Unfortunately, we're still in a model now where, and I think you mentioned this earlier, we largely don't understand what the financial implications of the treatment that we are recommending until after it's been recommended and it's implemented and only then do we discover what the financial implications are for the patient. And so that's backwards. I think we need to work toward a system where you know as that patient's physician I have some understanding of what the financial implications just like I have some understanding of what the you know that the physical side effect implications may be of a treatment before

I prescribe it because then it will help me put it into balance and to engage in a process of shared decision making with the patient. But in the meantime, there are frameworks and an increasing array of tools and resources that can help to address this. So the American Society of Clinical Oncology in February published their

policy statements on social determinants of health and cancer care. And I would definitely refer anyone interested to that because it's an incredible description of the problem and identifies a framework and potential solutions. And so for example, what can be done to address, and they have a table, and the first thing is awareness, which we've talked a little bit about.

They give an example, so for transportation challenges, for example, simply asking patients about their access to transportation. So if we're gonna be recommending an intravenous chemotherapy regimen that requires weekly visits to our infusion suite, and patients live at some distance, how are they going to get there? Do they have others that can drive them? Are they going to need to rely on public transportation? Then adjustment.

Ray Wadlow (18:25.942)

So activities that focus on altering clinical care to accommodate those identified barriers. So in the case of transportation, maybe thinking about reducing the need for in-person healthcare appointments, not for the infusions, of course, but for some of the other appointments that we now have access to telehealth, for example. And oftentimes, that is sufficient and can save patients the extra stressors of needing to be at every visit in person.

Then seeking to provide assistance perhaps through activities that reduce social risk by connecting individuals with relevant social care resources, for example, in this case transportation vouchers or ride sharing programs, aligning with the patient's needs through activities undertaken by healthcare systems to understand these various social care assets in our communities. So, for example, investing at the healthcare level in community ride sharing or time bank programs.

And then finally, at the policy level, nobody can, I don't think anybody except for patients themselves can advocate more effectively for change at the policy level than healthcare workers. So working together through our organizations to promote policies that fundamentally change, again, sticking with this example, the transportation infrastructure within a particular community. And so we've been talking about transportation, but as you can imagine, this framework can be used

food insecurity, for risk of interpersonal violence that are part, that it's a key part of the social determinants of health and that can lead to adverse health related consequences. And then I think working with the resources that have been put in place within your, within our health system to, you know, I can't, physicians cannot and don't have the expertise, much less the time to address all of these things.

So thinking about who are the other members of the village? And I literally tell patients that, like, you will have a village of people caring for you, about you, and who are the right people with the right access to the right resources to address these issues.

Wayne Jonas (20:37.13)

Yeah, I think that's fantastic. Yeah, so in addition, if they find themselves getting hit with a drug bill, for example, or tests and that type of thing, or their resources that can, who do they talk to then to help identify resources to help offset some of those costs?

Ray Wadlow (20:56.598)

Right, so for the direct cost of the medical care itself, there are often financial assistance programs that are run by the pharmaceutical manufacturers. Some of them can be difficult, and oftentimes people don't qualify because their income is just a little bit too high, but they still have extreme financial toxicity. There are other resources like the Good Shepherd Pharmacy, which uses donated

medications that were not needed by other patients. But it's complicated because the system has become very difficult to navigate between specialty pharmacies, pharmacy benefit managers for the oral medications. So I think what patients are really looking for is somebody to help them navigate this process. And so identifying who those people are and making sure that the patients have

to them, can talk to them, you know, the financial navigators to try to understand which of these in this web of resources are going to be the best options to help minimize the cost of care, reduce the financial toxicity, and then making sure to the extent that the system is still a little bit backwards in terms of the physician not understanding that before recommending the treatment plan, so long as we're in the current workflow, then circling back, so communication

with the other team members so that then I can return to my conversation with the patient and sort of say, okay, what are our options here? What are the implications of this treatment recommendation? And if the financial toxicity is going to be beyond the level that you are comfortable with, what are the trade-offs, right? I think that's a key, that follow-up conversation is incredibly important and needs to happen pretty close on the heels of the initial encounter.

Wayne Jonas (22:52.914)

Yeah, so it can get be quite complicated and the system itself isn't very integrated. And so somebody to assist in traversing or navigating the system who's on your side, who knows what your non cancer specific treatment needs are and can help you navigate the system then becomes crucial in those areas and pointing into that area. 

There's a growing amount of evidence in what's often called integrative practices, such as acupuncture for pain, mind-body practices for stress and anxiety, and that type of thing. Many of those are out of pocket, aren't they? But they're not covered at all by insurance, any insurance. But I understand that there is a supportive care center there at Inova called Life with Cancer

that over the years has grown and is also now makes many of these types of services free, from psycho-oncology to social work to nutrition education, to acupuncture, yoga, that type of thing. Is that correct? Do you utilize those?

Ray Wadlow (24:03.198)

Every day, Wayne, we're very, very fortunate to work with our colleagues through Life with Cancer. They're just a huge part of cancer care here in Northern Virginia. They've been around for multiple decades now. I can't remember exactly when they started, but they exactly. They provide these services, which increasingly are evidence-based, in many cases as evidence-based as some of the cancer disease-specific treatments that we're recommending

and they do it largely at no cost for patients and their families, and they do not have to be receiving care from Inova. They can simply reside in our community, be getting cancer care wherever. So we're really lucky in that respect, because you're right, Life with Cancer is largely philanthropy funded, and although there is some increasing payer coverage of evidence-based interventions like acupuncture for chemotherapy-related nausea and neuropathy,

Ray Wadlow (25:03.223)

mindfulness training for cancer-related anxiety and depression, most of the times these services that are not covered. And so they're paid for out of pocket and it creates disparities in access for things that we know improve outcomes in whole person care.

Wayne Jonas (25:18.21)

So Ray, there's quite a wide range of disparities in the area of financial toxicity as there are financial resources in general. What's been your experience about that and how is that being addressed?

Ray Wadlow (25:34.878)

Thanks for asking, Wayne. Well, there's no question that financial toxicity disproportionately affects our communities of color, our black and brown, ethnic and racial

Ray Wadlow (25:48.542)

minority communities have a disproportionate share of adverse outcomes, difficulties with access, and shouldering the burden of excessive costs of care. So I think it's something that is getting an increasing amount of attention. I was very fortunate to be at the White House yesterday for a panel that was convened to address this with a lot of people who have a lot more experience and expertise in this area than I do. And there were a lot of wonderful...

ideas that were discussed. But I think one of the themes that I walked away from is we need to continue to put systems in place that measure these social drivers of health so that when targeted interventions are implemented, we then have a way to assess their efficacy because we need a lot of ideas and we need to try a lot of things, but not everything's going to work and we need to know quickly what works well and what doesn't. So getting sort of,

the individuals who have the expertise and the systems in place to understand how financial toxicity, for example, disproportionately affects minority communities, and then addressing how these pilot programs are potentially beneficial, I think is going to be tremendously important.

Wayne Jonas (27:07.532)

Well, as you pointed out at the beginning, awareness is the first and one of the most important steps in addressing, you know, the care of the person, especially in some of these areas. And I know that surveys, we supported a survey that showed that increasing awareness among clinicians was really, really important. And you're doing that, you're educating, you know, current and future oncology fellows and as I understand it, you put together a pretty unique training program there. Can you tell us a little about that? 

Ray Wadlow (027:40.378)

Again, thank you for asking about this. So in the mid 2010s, I co-facilitated Life with Cancer's young adult support group with Sage Bolte, who's the head of the Inova Foundation at that time, was the director of Life with Cancer. And what I learned from doing that over, I think it was about three years, once a month for an hour and a half or so in the evening, this is pre-pandemic, so everything was in person.

Was that my role was not as a physician to offer advice to these people, but was rather to...they were teaching me. So I would go and I would sit there and I would listen. And I would ask questions and facilitate conversation, but it was just a tremendous opportunity for me to learn outside the confines, the limited sort of context of the clinician-patient encounter, the exam room, the hospital room,

what it's like to literally live with cancer in all of its different aspects, including financial, personal, everything. And so when I got to Inova in 2020 and started the fellowship, one of the first things I knew was that I wanted all the fellows to have the same experience. So we have since expanded that to what we call our psycho-oncology curriculum that consists of several pillars. One is co-facilitation of patient and caregiver support groups

in collaboration with one of the trained Life with Cancer therapists to our monthly seminars, interactive seminars taught by the Life with Cancer professionals about a range of topics ranging from grief, burnout, wellness, culturally sensitive care, etc. Three narrative medicine sessions which are led by one of my colleagues, Jafar Al-Mondhiry, who has a special interest in background in humanities and medicine where he brings readings, poetry, podcasts, articles

related to whole person care and the experience of cancer. And then the fellows are able to write about them during the session and have very meaningful discussions. And then finally, communications training, where one of my colleagues who has expertise in communications works with the fellows with standardized patients who are actors. And...

Ray Wadlow (30:00.402)

They work using particular scripts to address challenges of communication, for example, breaking bad news. And this whole curriculum together that we think is very innovative, it's not all completely original. There are a lot of other programs that are doing parts of this, but putting it all together in the way that we have and then collecting survey data. I spoke a little bit about measuring, the importance of measuring so that we know what's working and what's not. We've been able to demonstrate that, at least it's very early, but that...

this program seems to improve the fellows' perception of their communication skills and potentially improve their overall wellness and reduce burnout. And this is going to be presented at the American Society of Clinical Oncology meeting in June. So we're excited about that.

Wayne Jonas (30:42.38)

Well, that's fantastic. I wish I could have gotten that kind of training and all oncologists can do that. You know, in many ways that's bringing it back full circle, right? You're embedding the art of medicine back into the science and then infusing it with science, but not leaving the art behind so that the human part of healthcare is not lost.

Well, for those that don't have a fellowship like that to go to, there is a CME program that will come out in conjunction with the book. You assisted in that, comes out from the Tufts Center for Medical Education, and that should be out soon if it's not already out by the time this podcast occurs. So I encourage those that are interested in that, oncologists, nurses, others on the team, to take it. It's free and can help them jumpstart that kind of training that you've just described so thoroughly. So thank you very much. I just appreciate everything that you do in all those dimensions, uh, for taking care of the person.

Ray Wadlow (31:46.878)

Thanks so much Wayne, it's mutual, I've really enjoyed it.