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In this ASCO Education episode moderated by Dr. Rami Manochakian (Mayo Clinic), two-time cancer survivor and patient advocate Ms. Samantha Watson and medical oncologist Dr. Lidia Schapira (Stanford) discuss the multifaceted impact of high cancer care cost on patients and survivors. They also review communication strategies and resources oncology providers can offer to help alleviate financial toxicity.

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TRANSCRIPT

Dr. Rami Manochakian: Hello, and welcome to the ASCO Education Podcast Series. My name is Dr. Rami Manochakian. I'm a thoracic medical oncologist at the Mayo Clinic in Jacksonville, Florida.

As today's host, I'll be moderating a discussion on what I believe is a very important topic when it comes to cancer care and its financial toxicity. I am very excited to have two wonderful guest speakers who are joining us today. Dr. Lidia Schapira, who's a medical oncologist with a focus and specialty in breast cancer and cancer survivorship. She's a professor of medicine and oncology and director of the Cancer Survivorship Program at Stanford University.

We also have with us, Miss Samantha Watson. She's a two-time cancer survivor, patient advocate, and Managing Director of Stewardship at Expect Miracles Foundation, which is an organization dedicated to providing emotional and financial assistance to people with cancer. It's a pleasure to have you both with us today.

Samantha Watson: Thank you so much for the opportunity.

Dr. Rami Manochakian: Miss Watson, I'm going to start with you. Your story that I got to learn about is very inspiring. You had cancer twice as a young adult. You've gone through a lot. Can you tell us what was it like to go through that journey with two cancers, and a lot of treatments? Also, during that journey, definitely, you must have experienced a lot of financial and other social challenges. I'd like to hear more about that, please.

Samantha Watson: So, I was a senior in college, and I'd had recurring knee pain that nobody could really diagnose for any reason. And it would come and go throughout my years of college. And finally, when I was a senior in college, I had extensive testing and they found Ewing sarcoma, which I had never heard of.

My mom actually was an oncology nurse at Memorial Sloan Kettering. And so, I don't think it was on anybody's radar screen, but she understood the language way better than I did.

What I came to learn was that Ewing sarcoma was typically diagnosed in boys under 20. And I was female and 21 at that time, and it was diagnosed about 300 times a year. So, I had no frame of reference for this. I had been around Sloan Kettering when I was a kid because my mom worked there, but I didn't know what it meant. I didn't know what cancer felt like. And I certainly did not know anybody else who had gone through it.

But at that age and life stage, I was getting ready for my future. I was looking forward to graduating from college, I was looking forward to living on my own and everything stood still.

So, the cancer was in my leg. When I was diagnosed, I went through nine months of high-dose chemotherapy. I went through a 12-hour surgery. I had to relearn how to walk and did a lot of PT. In that time, my friends graduated and they started moving forward and they started creating their lives. And I sat back and watched.

I spent about four months at home after my treatment for Ewing's and I did my physical therapy. And I tried to figure out where to place cancer in my life as a young adult. And I went back to school and I had one semester left and I started to catch every cold that went around and strep. Just everything that goes around a college campus, I was constantly down and my doctors kept saying, ‘Don't worry, your immune system just has been devastated by this chemo and you just need time to recover.’

The day before my 23rd birthday, they did a bone marrow biopsy and found that I had Myelodysplastic syndrome, which was a very early form of leukemia. And a month before I graduated from college, I was told that I needed a bone marrow transplant.

Thankfully, because the search was long, and did not really involve me as a patient, I was able to go back to school and graduate from college. I sort of closed that chapter and had a bone marrow transplant about three months later in August of 2001.

And so, again, I was stuck in the hospital for months and months and months, watching all of my friends, again, graduate, go forward, get their jobs, and go on dates. And I sat back and watched and so my recovery, the second time, was very different because when I was freed from the hospital and able to sort of take my steps forward, I didn't really have anywhere to go. I had already graduated from school, I had not yet started working, and I have a very, very wonderful network of support from friends and family. But I wasn't really sure who I was and what I wanted to do.

So, to make a long story a little bit shorter. I started working for a nonprofit organization feeling like there was something more I was supposed to be doing. One of the things I started to become aware of, in my own survivorship experience, was that the aftermath was really hard. And it was uniquely challenging as a young adult without very much financial stability, or no experience, really in the healthcare system on my own. But also, I didn't have any peers. Everyone that I had gone through treatment with had passed away with the exception of me being one person.

So, I didn't have anyone to ask about this issue of young adult cancer and how to get my self-esteem back when I looked and felt different. And as I was sort of navigating these things, I got a bill in the mail for $275,000, which is an absurd number, anytime. But as a 24-year-old, who didn't really have any money in the bank. I mean, that was just completely impossible.

Dr. Rami Manochakian: Absolutely. Wow!

Samantha Watson: Yeah! So, very, fortunately, again, my mom was my best advocate. She spent two years fighting that bill, but I started to put the pieces together and realize that not only is survivorship hard, but it's financially challenging when you're on your own.

And so, I put those two pieces together and created an organization called the Samfund to provide financial support to young adults once treatment has finished because what I kept hearing was that we all share this experience of feeling like we got pushed off a cliff. And then they threw all sorts of bills on top of us while we were down there.

Dr. Rami Manochakian: Wow! Thank you. We're so glad you're with us after this many years. And you're doing well. That's wonderful, but definitely, I think what you've experienced on the other side, is what's after treatments. Dr. Schapira, we hear that term a lot, we as treating physicians, what does it mean to have financial toxicity and to go through it?

Dr. Lidia Schapira: Well, first of all, I do think that Sam's story is so inspiring, and really illustrates what the lived experience is for so many people treated for and living with and beyond cancer.

I think of financial toxicity as sort of an umbrella term that refers to the harm caused by the cost of receiving treatment for cancer. And the way that people are penalized with all of these bills that reflect a really difficult and broken healthcare system.

I think of it in terms of the pain and suffering in a way caused by the burden of cost. So, there can be material aspects, such as new debt accumulation, selling or refinancing a home, a decline in income, having to take loans to pay for cancer treatments, and even bankruptcy.

But there can also be psychological aspects, such as worrying about paying for treatment and being distressed. And there can be behavioral aspects, such as avoiding care or skipping doses of medications to save money. That is a story that we also hear as cancer clinicians.

Dr. Rami Manochakian: Absolutely. I think you mentioned it, and I couldn't agree more with the burden. I mean, the patients have so much to worry about, the patients and the caregivers, about their journey, fighting cancer, going through treatment, and then adding that extra burden and worrying about day-to-day life, their kids, and their future. Definitely, that's a lot.

Miss Watson, with you with the society or the organization that you're leading, you're getting a lot of calls from a lot of patients who need help. How are we doing in the last decade or so in this field, in this aspect?

Samantha Watson: On the one hand, I take it as a very promising sign that we're talking about it, because when I got that $275,000 bill in the mail, if my mom had not been a nurse and known that system enough to navigate the appeals process and all of that, I would still be paying that bill off, if I hadn't already declared bankruptcy. Nobody was talking about it back then. Financial toxicity was not a term that anyone brought it. Nobody talked to us about our bills.

So, I do think that conversations like this, and many others like it are very hopeful signs that we are headed in a good direction. That said, the costs are only getting higher and the economy is only getting harder, and I think we're starting to see the many ways in which this plays out for anyone who's touched by cancer.

At the Samfund, we were focused on the young adult population. Two and a half years ago, we merged with an organization called Expect Miracles Foundation, and we still provide Samfund grants to young adults. But we also provide funding for innovative cancer research and hear from thousands of people every year who are diagnosed with all sorts of cancer diagnoses at all ages.

One of the things that have become very clear to me is that young adults face financial toxicity in a unique way because they have a lot of things stacked on top of each other given their age and their life stage. But the issues really aren't unique to young adults at all. I think what we have seen is that financial toxicity affects essentially anybody who is diagnosed with cancer and/or as you said, is that the caregiver or family member and is directly impacted in that way too.

So, I think, on the one hand, the problem is getting worse, but I do think it's hopeful that we're getting closer to finding solutions and at least a willingness to talk about this.

Dr. Rami Manochakian: Thank you! Dr. Schapira, we live in an era of hope for patients with cancer. The number of drugs, the number of procedures or advancements in science, the research, and education really are great, and we're helping many patients live better and live longer. But that's of course, coming at a cost.

I'm a lung cancer specialist. Half of our patients now with advanced cancer have their cancer harbor mutation that we prescribe some great treatments, very effective, but very expensive bills. I think when we talk about financial toxicity, there are so many aspects, there are the drugs, the pills, the infusion, the scan, and employment, can I keep up my bills? What can you tell us about the different aspects of financial toxicity?

Dr. Lidia Schapira: As you say a lot of innovation is associated with a high price tag, and rising healthcare costs are being increasingly offloaded to patients by ways of rising premiums and out-of-pocket costs.

So, when you talk about targeted treatments that bring a lot of hope, we also have to remember that with a rising number of prescriptions, some of the drug plans have tiered formularies, where expensive specialty drugs typically fall into the highest tier.

And so, patients are often responsible for a percentage of the total cost of the drug, as opposed to a fixed co-payment. So, if we get more granular about this, we can say some of these drugs may cost in excess of $10,000 a month and are covered through some of these outpatient prescriptions as part of a health insurance plan.

But in such cases, a patient who has a tiered formulary that requires a 20% coinsurance for a $10,000 oral cancer drug may have an out-of-pocket cost of about $2,000 a month. I'm just putting some figures to this because these numbers are very hard to manage for so many of our patients, and we're all in a bind. We all want this to be different. But this is the reality that we as oncology clinicians, and our patients and families face every day.

Dr. Rami Manochakian: Absolutely. Thank you. We want and the patient wants the most effective treatment, regardless of cost. But then how can we integrate that into our shared treatment decision planning or making?

Samantha Watson: I do think that there are things that we can do, I think it's really important to recognize that this is the responsibility of a group. It is not just a provider's responsibility to bring it up, because then as Dr. Schapira was saying, you have to know the details of every individual patient's insurance situation, and income situation, there are just so many variables that can affect people. And it's unreasonable to expect any one oncologist to keep track of all of that. So, as a patient, I recognize how big that ask is.

At the same time on the patient side, I think it's one of these situations where patients don't know what we don't know. And as someone who is diagnosed with cancer, especially at an age when I have never had to advocate for myself before, I wouldn't have even known what questions to ask, I think when your doctor says, here's the drug I'm prescribing, you take it. And I think that even now, with all of the research that's been done, and all of the focus on financial toxicity, still most patients' inclination is to trust their doctor and not ask, is there a more affordable option, because there's still this perception, as you said that the most effective treatment is also the most expensive and nobody wants to sacrifice their chances of survival to save money.

And so, I think in the end, this is a group discussion. I think there need to be financial navigators or patient navigators, if they are available to the patient.

I also think that patients, caregivers, partners, parents, children sometimes, depending, can also be part of that conversation because, in everything that I have learned in the last 20-plus years, I still think that had someone tried to talk to me about my bills too early, I probably would have tuned it out. But that's not to say those conversations aren't important and sometimes somebody else in the room who can hear it better.

And so, I think if this is a collaborative effort on the part of patients and providers and family members, and other professionals within the hospital, then absolutely it should play a part because there may be other ways to either manage the high cost of treatment or lower the cost altogether. And sometimes it requires getting creative, knowing if somebody is going to need to take time off work for these treatments or to deal with the side effects that could have a devastating effect because, in the end, financial toxicity isn't just about the cost of treatment. It's about the full financial impact with many moving parts and employment is one of them.

So, I think it's really important also that this is an ongoing conversation, this is not a one-time conversation and people's situations change, and the ability to hear, and process information changes depending on where the patient is and how they're feeling on that day. And so, I think this is certainly an ongoing effort, but also has to include more people than just the provider and the patient alone.

Dr. Rami Manochakian: I love it! I couldn't agree more. Here is a caveat or challenge, which I'm going to ask Dr. Schapira. As an oncologist. I couldn't agree more with what you're saying, but I don't know and maybe a majority of oncologists, Dr. Schapira, we don't know a lot about the cost, at least upfront, we know the drug is cost like this, or the scan or what's going to happen, but an individual, we don't know what's the patient insurance plan.

I feel sometimes that I'm not able or equipped to discuss the cost of care up front. And that sometimes could create friction, because maybe we owe it to our patients to discuss. So, what do we do as oncologists or as oncology healthcare providers as a team?

Dr. Lidia Schapira: You ask a wonderful, multifaceted question. So, the first thing I would say, and what I've spent my entire career doing is we need to be empathic listeners. And we need to create a safe space in our consultation and exam rooms so people can tell us what's on their mind.

So, we may not be able to fix it but we need to be able to talk about this, if it is burdening our patient, just as we talk about any other toxic effect of the diagnosis and treatment. That's one thing we can do. We can do that by routinizing the conversation by asking at multiple points when somebody is ready, or before they're ready, perhaps talking to somebody in the family, we need to be thinking about it. But I think that it's complicated for us too because we are also stakeholders and we also are committed to treating patients with beneficence and advocating for justice, and we see all the harm that's been caused by the system where all of these burdens are placed on people at their most vulnerable time. And we all think it's not particularly fair.

So, I think that part of the conflict for us is that we feel we could do more for each patient. We feel we would like to do more collectively for all of the patients under our care and the care of our colleagues.

So, I think that part of that sensation, a feeling that we don't have sufficient power to fix it, may get in the way of us really collaborating in an open and empathic way with our patients who are experiencing these issues every day. We can think about what tests we order. We can think about the co-payments for the imaging tests. We can think about talking about whether or not they can afford those ancillary medications that we prescribe with great intentions to make their life more bearable.

So, there's a lot we can do. There's a lot we can do. I think we need to support each other. We need to link arms and advocate together for a more just system, but we can't not do anything about it.

Dr. Rami Manochakian: Thank you. This is, I think, very important. It really struck me when you say, look, even if we don't know, well, we're going to talk later on about resources and referring patients. But I do think that patients would like to see their oncologist or hear their oncologist or their treatment providers, or caring providers bring up the cost.

I think just like we asked them about their side effects and about how are you doing and what's happening and quality of life. I think bringing that up, making them feel that we are with them on this journey, even in these details, which often don't come and I'm sure many of our listeners are interested in asking what resources are out there?

Of course, each institution may have its own resources. But, generally speaking, what should we tell our patients? Where should they start from the patient caregiver? What resources are available to avoid or reduce financial toxicity?

Samantha Watson: I think in order to answer that, I also want to reiterate something that Dr. Schapira said from the patients’ side, because I think that oncologists don't have to have the answers, that is obviously asking way too much.

I think sometimes just bringing it up or acknowledging that there is a cost to this and that it is going to have an impact on someone's life is exactly the validation that a patient needs because culturally, we don't really like to talk about money. We're not really all that comfortable talking about illness either.

And so, when you put those two things together, it is a conversation that nobody wants to have. And so, what we hear from thousands of patients every year is that they are so ashamed by all of this. They feel like they have done something wrong. They feel like their doctors aren't going to get paid if they have an outstanding balance. And there's so much just misperception about how all of this works. I think just to bring it up to a patient to acknowledge it is so critically important.

As one example, when we were trying to find ways to tell the story of young adult cancer and financial toxicity at the Samfund, we ended up using 'Cancer isn't free', as our tagline. And when the team of volunteers who came up with that presented it to me, I actually cried, they will tell you that I cried in a meeting when they told me that because it was exactly what we needed.

I think, especially in the survivorship. Everyone, patients, family members, and friends assume that you're cancer free, and that, therefore you're fine. And so, to flip the script a little bit and say, ‘Well, wait for a second, cancer isn't free,’ opened up so many conversations.

We certainly didn't get any closer to lowering the cost of cancer, but not carrying around the weight of this shame and just fundamental discomfort in asking for help after treatment especially, it just opened up more conversations, and we saw so many young adults and other people take a deep breath.

And so, I think bringing up these conversations, even if they don't lead to immediate solutions is a really important first step. And so, with that in mind, I would say that any nonprofit hospital has to have a financial assistance program. They don't always advertise it very well and they don't always make it very easy to find on the websites. Some hospitals do a better job than others, but these programs are there.

The parameters vary, as you said, depending on the hospital and its resources. But I think as a starting point, anyone who's interfacing with that patient should at least say, ‘If you're struggling financially, if a bill comes in that you don't know how to handle, please give a call to this.’ It can either be the patient assistance program, a financial navigator, whatever your particular hospital calls it, and just give the person the resources that they can access it when they're ready.

So, I think that's a really important first step and a doable one, because it's a referral, nobody has to become an expert in that particular program just to know that it exists and to share that contact information.

The other thing I would say is that there are many, many more patient advocacy groups now than there were 10 years ago, and certainly than there were 20 years ago. And so many of the people that find us as one example, find us in a Google search.

So, anyone that is looking for help with finances, help with bills, cancer bills, I mean, there are all sorts of combinations of words they can search for, they will find the groups that they need. They just don't always know that they're supposed to search for it.

I think, again, bringing up this conversation, whether it's put in clinical terms like financial toxicity, or more informally, like, ‘Hey, how are you doing? How's your job? How's your stress level?’ Trying to gauge what their biggest challenge is, can sort of inspire them to go home and seek out the resources they need. But until these conversations even start, they don't know what they don't know.

Dr. Rami Manochakian: Absolutely, thank you! These are very helpful. Dr. Schapira, on our end, the providers, what tools and resources can we go to help us, clinicians, discuss financial toxicity more comfortably with patients?

Dr. Lidia Schapira: First, I would say to be comfortable in just talking about it and being open and receptive. The second is to build some expertise in the team. We don't have to carry this. We need to be part of the solution but we don't have to have all the fixes.

I think the idea of financial navigation is gaining traction with our colleagues. There are some people who actively are embarking on research, including a very interesting randomized control trial of a financial navigation intervention that's currently underway.

So, I think that we need to have people who are available to us that we can call, who can help patients understand their bills, who can help patients find sources, perhaps that can help them with payment, to find the nonprofits or charitable organizations, that can help them fill out forms, help them with legal aid, if that's what they need, help them apply for pharmaceutical assistance or health insurance.

All of these are very concrete tasks, and we need to have some capacity in a cancer team to deliver these. And I think for us, as oncologists, what I would love to leave us with is the idea that we can't wait. There is an urgency of getting all these things implemented. And we can do it in any number of ways, but it's something we absolutely need to deliver to our patients.

Dr. Rami Manochakian: Absolutely. Thank you for bringing that up. As you both mentioned, it's very good that we're talking about it more. I'm remembering a patient of mine who told my social worker, and kudos to all the wonderful social workers and case managers out there, these patients advocates out there are a very important part of the team, not just the doctors, the nurses, the others. They're looking after the patient in so many aspects.

I remember my social worker telling me, well, the patient did say, ‘Please don't bring this into much detail to Dr. Manochakian.’ And when she asked her why? And she said, ‘Well, because I don't want him to worry about that part. Let us worry about this part.’

That struck me. The patient doesn't want me to worry about her or his financial toxicity. I mean, of course, we need to but I don't want to make it sound like the sky is blue. That, yes, that should be something easy.

No, it's not easy. An important challenge is time. A lot of time the social worker would tell us, ‘Well, we also understand that you don't have time for it. Your visit with the patient is 30 minutes or an hour. We do know that in the community, sometimes visits are shorter, you don't want to just ask and then change the topic. And if you ask for a candid conversation about financial toxicity, it's gonna take time. Where do you have that time?’

So, I don't know. Dr. Schapira, if you have a solution for that, or an idea because it is, I think a major challenge is time and this is maybe where the social worker and other people help. But this conversation needs time and there is in this day and age in health care, there is not much time.

Dr. Lidia Schapira: My short answer to that is we need to build teams that have the capacity to absorb these issues, just as we've learned to deal with other difficult conversations and other difficult topics that are such an important part of people's lives.

And remember that this just doesn't affect cancer care. There may be other specialists, there may be primary care physicians who were also there trying to assist patients and families, and there may be other decisions that are linked to whether or not they receive cancer care, or what kind of cancer care they receive.

So, I think that we're all in this together and my take home is that we all need to have this capacity in our settings wherever we deliver cancer care.

Samantha Watson: One thing I would add also is that cancer is not a single appointment, right? We all know that. I probably spent more hours in the clinic, the years of my treatment, than I did in my own house.

So, we have a lot of opportunities to do this. I'm thinking about the many days either inpatient or outpatient, when, for example, a nutrition specialist would come and see me because I couldn't eat and my weight was dropping, and everybody was concerned about that. And on some days, I just didn't want to hear it, I wasn't hungry, I couldn't stomach whatever she was trying to give me. But on other days, I took it and was ready to try and put the weight back on and take her suggestions, and I was just in a different frame of mind.

And so, I think that if there is a social worker, a financial navigator, somebody who can make some of these referrals to organizations and to assistance programs within the hospital, that even joins one of the appointments for the last five minutes, or pokes their head in every so often to check-in. We have a lot of different opportunities to do that because most people also are spending time inpatient. And so, I think this probably also is a learning opportunity, right? We see what works. And we see we will learn from this because we're figuring this out in real-time. And hopefully, five years from now, 10 years from now, we will look back on this time when we started to have these conversations and try out different strategies and get to the root causes of some of these issues, and we will have figured out solutions. But I think for right now we just need to try.

Dr. Rami Manochakian: Well, thank you. This has been really very insightful from both of you. I really appreciate everything you share today. As we are reaching the end of this podcast, I'd like to ask each one of you to give all these wonderful patients and caregivers, anyone who's involved in cancer care out there, a final message. I'll start with you, Miss Watson.

Samantha Watson: One of the things that we have touched on in this conversation is that financial toxicity is not limited to the cost of treatment, and therefore the experience is not only felt while someone undergoes treatment. It extends well into survivorship. It extends to employment issues. It extends especially for young adults to family building challenges, which can be very expensive. And this is an ongoing issue but the thing that I would leave people with is that there is a way through it.

I have done this work for 20 years. I have heard thousands upon thousands of very similar stories, not just about profound financial struggle, but about resilience and about determination. And if this is just a matter of connecting the dots, and we know that there are some resources out there, we have to make sure patients know about them. We have to arm providers, social workers, and other professionals with the confidence and the information to share but I think if we can do that well, and when we do that well, we have already seen that, especially in the young adult community, which is the one that I know best, so many of these incredible patients go on to live very happy and wonderful lives.

And if I have an example, I had my bone marrow transplant almost 21 years ago. I have dealt with plenty of side effects and a lot of bills. I've been happily married for 15 years. I have a career that I love, and I'm a mom to two beautiful children. So, with the right support, and with the right mechanisms and conversations in place, people absolutely can move forward through this.

Dr. Rami Manochakian: Thank you! Dr. Schapira?

Dr. Lidia Schapira: My final comment is that we have learned a lot through research and through conversations, we know that there are some who are at greater risk for financial toxicity and harm, and those who are the younger patients are the ones with lower income, particularly black rural patients.

So, we need to redouble our efforts. We need to do this with compassion. We need to do this as part of the work that we do. We need to involve people who have special expertise in this and bring them into our cancer team. And we too, I think, need to feel that this is a general fight that we all need to get involved in to make cancer treatments, and particularly the novel, cutting edge cancer treatments more accessible for everybody who comes to our care, and without burdening them for the rest of their life with the consequences of treatment.

Dr. Rami Manochakian: Thank you! You couldn't have said it any better. I do like to mention here also since this is an ASCO podcast, I'd like to highlight the efforts by ASCO, the American Society of Clinical Oncology, and many other societies to be fair out there in their advocacy efforts with Congress, with the government about what can be done more also at a higher level to try to increase access in more effective, more affordable health care. And this was very insightful. I'm positive, it's very helpful for many listeners, patients, and caregivers out there.

As you both mentioned, to further highlight the importance of keep talking about these topics, to tell every patient out there that help is there. But you need sometimes to remind yourself to ask for help. Don't be ashamed of talking about financial toxicity, bring it up. We as healthcare providers know we're not doing a great job yet at it, but we need to help each other patients and healthcare providers, and all the team members to talk about this topic more and see how we can help.

The conversation needs to be continued about financial toxicity for patients, cancer survivors, continue to communicate, share the resources, and definitely, I think the future will be better. It needs time, but hopefully, we can get there slowly. Thank you so much, both of you Dr. Schapira and Miss Watson. Thank you so much to our wonderful ASCO staff. Thank you to our listeners. We appreciate you tuning in to this episode of the ASCO Education Podcast. Have a good day everyone.

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