JCO After Hours: A Discussion With Veena Shankaran and Scott Ramsey

Shannon Westin, Veena Shankaran, and Scott Ramsey discuss the issue of financial toxicity among low- and middle-income cancer patients.   TRANSCRIPT The guest on this podcast episode has no disclosures to declare. Dr. Westin: Welcome to JCO After Hours. I am your fearless leader, Shannon Westin, the editor for social media of the Journal of Clinical Oncology, and it's my great pleasure to bring you another episode. Today, we are going to be talking about a paper published in the January 7th version of the JCO called “Risk of Adverse Financial Events in Cancer Patients: Evidence From a Novel Linkage Between Cancer Registry and Credit Records.” And none of the participants have any conflicts of interest. I am joined by two amazing people. First, let me introduce Dr. Veena Shankaran. She is a physician in the Seattle Cancer Care Alliance, professor in the Division of Medical Oncology at the University of Washington School of Medicine, and co-director of the Hutchinson Institute for Cancer Outcomes Research at Fred Hutch Cancer Research Center. Hey, welcome. Dr. Shankaran: Hi, Shannon. Thanks for having me. Dr. Westin: I'm so excited to have you. And she's joined by her colleague, Dr. Scott Ramsey, who is a professor in the cancer prevention program in the Public Health Sciences Division at Fred Hutch and the director of the Hutchinson Institute for Cancer Outcomes Research at Fred Hutch. Welcome, Dr. Ramsey. Dr. Ramsey: Shannon, great to be here. Dr. Westin: This is such an exciting paper and so very timely. We've been certainly hearing—I wouldn't say a lot but more and more about financial toxicity over the last few years, I'd say very appropriately. So, let's start with the basics. Let's make sure we level set. Can you educate our listeners on what financial toxicity is and what it means for patients with cancer? Dr. Shankaran: Yeah, absolutely. I can start. Financial toxicity, I think, is a relatively recently recognized complication, if you will, of cancer treatments. And really, I would say over the last decade or so, the literature has just sort of exploded describing kind of the various aspects of this big problem. I think one conceptual model that sort of helps me understand financial toxicity was developed by Robin Yabroff and Reggie Tucker-Seeley that really describes financial toxicity is that trifecta of material, financial hardship, kind of what we think of as out-of-pocket expenses, debt, the money that you pay to get cancer care. The other aspect is sort of the indirect coping mechanisms related to the cost of cancer care, like forgoing treatment, forgoing surveillance, cutting back on treatment-related cost concerns. So, more of the behavioral aspects. The final aspect is sort of the psychosocial-psychological aspect of financial hardship, which is really just the distress related to how am I going to pay for all of this? How is this going to affect my children and sort of our financial well-being? It's a big problem, a broad problem that touches on a variety of issues and also affects families and caregivers too. Dr. Ramsey: I would add that financial toxicity really got into the literature probably seven or eight years ago. The term itself was coined by an oncologist, Yousuf Zafar, at Duke University. He told me he actually heard it from a patient who, when he was describing all the toxicities of cancer treatments, the patient said, ”Well, don't forget financial toxicity.” And so, that's how the term, according to Yousuf, was coined. He published a series of case reports on patients who experienced financial toxicity. And our group did a study where we linked federal bankruptcy records to the cancer registry and found about a 65% higher risk of bankruptcy among cancer patients. We also did a subsequent paper looking at mortality among cancer patients who went bankrupt compared to cancer patients who did not and found excess mortality. So, we do have evidence that severe financial toxicity, i.e. bankruptcy can actually affect survival. And now, since that time, there have been other papers that have looked at quality of life, adherence to therapy and have found those as adverse impacts as well. Dr. Westin: Well, that makes sense when you're looking at that trifecta. I hadn't heard that. That was really educational for me. But looking at the ways that patients cope with this issue and actually foregoing their cancer treatment. And I think I've certainly heard about that in terms of like diabetics, like maybe taking their insulin every other day versus every day. You could see where we would see something similar in a patient with cancer. Do we have any data to know how common this is across our patients with cancer? Are there specific cancers where we see this more commonly, or is this kind of every cancer type is at risk? Dr. Shankaran: The non-adherence aspect? Yeah, I mean, I think in the studies that we've done, it hasn't been reported terribly commonly by patients. So, probably on the order of 7 to 10% of patients in the studies that we've done, though you have to imagine it's much, much more common and prevalent, particularly in cancers where people are taking oral cancer therapies, and these tend to be associated with a lot of high out-of-pocket costs, these drugs that go through the prescription plans. Actually, I mention a few papers that have been published over the years by Stacie Dusetzina, who's a wonderful colleague of ours, who's looked at how changes in copay, not even by a lot of money, but just slight increases in copays for these oral cancer medicines can significantly impact not only adherence to prescriptions that have been built, but whether or not people actually fill their prescriptions. Dr. Westin: Wow, that makes sense. So, what led you all to this particular work that's described in the paper in the JCO? Dr. Ramsey: As I mentioned, we had this bankruptcy study where we linked federal bankruptcy—and bankruptcy is an extreme form of adverse financial outcome. And I think our interest was, well, what happens with less extreme forms of adverse financial outcomes. And that led us, I think, to search for ways to characterize less severe forms, and Veena and I have done surveys over the years where we've asked patients, but it's very hard to define something that's on a population-wide level. So, we came to this idea of using credit report data and that led to a very long journey—I think it was about a two-year journey—to get one of the credit reporting agencies to agree to allow us to link their database with the cancer registry in our state. Dr. Shankaran: I always laugh when we talked about the study, because I feel like we've spent years—I mean, two years might be right, Scott, but in my head, it feels like closer to a decade—just trying to make this happen, because it was a long process trying to link the credit records to the cancer registry data. And to add to what Scott already said, part of our motivation for doing this is that there have been a lot of studies that have used survey-level data and where we've asked patients to describe what their financial burden is, and it's substantial. Sunny reports anywhere from 30 to 75% of cancer patients report financial hardship. These surveys, they're subject to interpretation, whether patients understand the question being asked. There's bias in terms of who participates in a study in the first place. And so, our feeling was, can we be a little bit more methodical in trying to understand what the impact is and looking at measures that—almost everyone has access to credit on some level or the other. So, it's a very kind of standard way of looking at people's financial status to use credit data. So, that was our goal in trying to understand, as Scott said, at a population level, what is the impact? Dr. Westin: One, that's brilliant, and that makes total sense. And anytime you can get population-level data, as opposed to the kind of trying to get people to answer questions and give you details, is always ideal. But I loved your aside about the two-year process because we have trainees listen to this or young investigators, and it's always good for them to understand sometimes the amount of time that can come—and this is obviously a really high-impact paper and so important, but even when we're doing just simple retrospective studies, the amount of time sometimes that goes into it, I love that kind of background, just to tell people it's okay if it takes a long time. It's still going to have an impact and still going to be important. That's a great segue into just really a review of some of the methods that you used for the study, what were your primary outcomes, and how you laid everything out. Dr. Shankaran: Yeah, so we essentially went to the credit agency—TransUnion, in this case—and asked them to provide us with a long list of credit attributes that we were able to link with the cancer registry. And there were many, many items that they gave us of credit data, of which we went through them all and really tried to understand the financial literature, the landscape of what credit measures are important, what indicates kind of this spiraling down towards bankruptcy, what happens first, what happens next? And so, with a lot of guidance from the economic literature and the folks from the credit agencies, we defined three categories of financial hardship that we looked at. The first one was what we categorized as severe financial hardship, which we described as inability to pay the bills as evidenced by third-party collections or charge-offs, which are basically kind of like collections where it's not worth it to the creditor to actually collect on it. The next is the kind of more of the impacts on or events that suggests potential action against a person's property. So, tax liens, delinquent mortgage payments, on to the most severe kinds of financial hardships, actually losing a home through foreclosure or repossession by the bank. And so, we took individuals with cancer, matched them by age and sex to individuals without cancer, and essentially looked to see how common these events were in the cancer population versus the non-cancer population, and then controlling for confounding factors that could also influence this association between cancer diagnosis and financial hardship. We found that cancer patients had a significantly higher, 71% greater risk of adverse financial events than individuals without cancer. Dr. Westin: That's so interesting and then can you take us through the bottom line of what y'all found? Dr. Shankaran: Well, the bottom line is that when you take people with cancer and similar people without cancer, cancer diagnosis has a significant impact on risk for major credit events that are likely to have, we think, long-term impacts on people's financial health. And that's a problem, and this does not seem right, and it should not happen that people who develop a disease, for the most part, no fault of their own. I mean, this is a major health shock that leads to potentially severe and long-term effects on people's financial health. Dr. Ramsey: And overall, the excess risk for any of these adverse financial outcomes was about 71% higher for the cancer patients compared to the non-cancer patients. Dr. Westin: Wow. That's an incredible number. I read your paper, but still hearing it just is incredible. So, what can we do? What recourse do we have here? How can we help support these patients? Dr. Shankaran: Well, I think you touched on this a little bit earlier, Shannon, which is that, how do we screen people for financial risk in the first place? How can we identify those who are most likely to develop these adverse events? I wouldn't say that screening everyone's credit score and credit status is really feasible at the clinic level, but our hope is to use these data along with other studies we've done to see if we can develop risk scores to try and predict those who would be most likely for these kinds of severe credit impacts. I think, in addition to screening, what we're really thinking about a lot, and I'll let Scott add to this in a second, but is what can we do at the clinic level to help avoid financial hardship. And we've been doing a lot of work on developing financial navigation interventions, which is essentially kind of like patient navigation, where you're trying to get people to their appointments and get them there on time, but really instead of navigating the logistics, navigating more of the financial aspects. So, hooking them up with resources for copay assistance or lodging, transportation, in the hopes that kind of comprehensively addressing all the financial aspects of care can help, ultimately, people stay on treatment and live better, have better outcomes. Dr. Ramsey: Yeah, and I'd add that I think the immediate things that we can do for patients—Veena outlined very well—screening people to find out people who are financially fragile, getting those folks to financial counseling services so that they can adjust their spending and saving so that they can withstand what could be months or years of excess costs due to cancer. It's worth noting that a lot of people don't choose to enter cancer, and they come with the financial situation they have, and some are well off, and some are very tenuous. And in order to prevent people getting into a disastrous situation, having someone look at their current situation is critical, and we've worked with a bankruptcy judge who says often it's the people that are kind of in the low or middle income that are at the biggest risk for falling because they have expenses that we all have, cable bills and car payments and everything else. And they don't think about adjusting those when they have cancer because they don't think this is going to be an issue, and pretty soon the added expense of paying for cancer care and the loss of work and the caregiving needs pile on to all the other expenses, and before they realize it, they're in serious trouble. It's much harder to get out of trouble at that point than to try to adjust your expenses to accommodate what's going to be a long journey for many people with cancer. Dr. Westin: What about more globally? I think that you addressed kind of at the clinic level. What about from an advocacy standpoint? Drug charges are the elephant in the room here, right? And I think one of you mentioned copays. I feel like we do quite a bit of targeted therapy in GYN oncology with PARP inhibitors and now lenvatinib and pembrolizumab, and it's just such a wide range. I have patients that have $0 copays and patients that it's going to be $2000 dollars a month or even more. So, how do we level that? And how can we advocate to our lawmakers to try to reduce the bonkers costs right now of targeted therapies and novel drugs in America? Dr. Ramsey: Well, I think it'd be easy to blame the pharma companies and the high price of drugs, but it really is a multifaceted problem. And I personally think we do need to have some policy discussions about what we can do to address this because it's so prevalent. I should add that it goes beyond cancer.  People with other chronic diseases surely suffer the same problem. But yes, the drugs are very expensive. But there’s also the insurance plans have copay and deductible structures that really are beyond the means of many Americans. I mean, as we mentioned, in the paper, a federal reserve study found that only 40% of US households could afford a $400 unexpected bill in their average life. And we know that's going to happen in probably the first week of a cancer diagnosis or more. So, I think the insurance needs to be restructured to address the fact that people can't afford the out-of-pocket costs that are part of the insurance system right now. I also think physicians need to have some role in this. Most of us don't prescribe thinking about the cost and its impact. In situations where there is an option between different regimens, one which would have a bigger out-of-pocket burden and one would have less, if we know the patient's financially fragile and the outcomes are similar, it's worth having that conversation to try to protect our patients. So, yes, the prices of drugs, we need to address that, but we also need to address insurance coverage. And as providers, we need to be mindful of what we're prescribing and how that impacts patients. Dr. Shankaran: I'll just add to what Scott said. I think one of the key things that we need in order to accomplish that goal of trying to be mindful about what we're prescribing is understanding what the costs are. So, there's very little cost transparency. You probably can't tell your patients that you treat how much the drug is going to cost them until you run it through the billing coordinator or people try and pick up the medication at the pharmacy or the bill comes to their house. So, we have not good strategies in place to be able to identify the cost in real-time and also the cost of alternatives. So, it's only helpful that we can adjust our decisions and include cost information in the shared decision-making process so long as we actually have that information. So, I think that's kind of part of the problem. I totally agree with everything Scott said, and will just add the way insurance works is that you pay more for things that are expensive for the most part, and you reach a cap at some point, which is one of the many good things that came out of the Affordable Care Act is that there are at least limits on how much you can spend over the course of a year for most insurance plans. But that limit is around $13,000 for a family over the course of a year. And given what Scott just said about how much liquid cash that most households have—it's $400 or less in most households in America—that's going to be really hard for most people to cope with. Dr. Westin: Well, thank you both. That went by so fast, and I really appreciate how in-depth you were able to get in a really accessible way, especially for somebody like me, who is just a novice at this and actually has been known to say, “I'm blissfully unaware of the cost of that,” which now I'm thoroughly chastened and will work very hard to expand my understanding so that my patients are in a better situation. So, thank you both for all of your hard work in this area. Really, really appreciate everything you've done and can't wait to see what comes next. And with that, I think we'll close this episode of JCO After Hours. Thanks to all our listeners, and we will see you next time.   The purpose of this podcast is to educate and to inform. This is not a substitute for professional 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. 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