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Dr Huh (Host): Hello. This is Dr. Warner Huh, the Chair of Obstetrics and Gynecology at the University of Alabama in Birmingham. And I'd like to welcome you to this monthly episode of Women's Health with Dr. Huh. Today, I'm really super excited about the topic we're going to talk about, something that really affects millions of US citizens, both men and women combined, is the topic of financial toxicity. And we'll get into that shortly and before we do, I want to welcome my guest today, Dr. Margaret Liang, who is an Assistant Professor in the Division of Gynecologic Oncology in the Department of Obstetrics and Gynecology at UAB. She's also the Associate Fellowship Director for the Fellowship in Gynecologic-Oncology in the department. And most importantly, she's a recent recipient of an O'Neal Invests Award from the O'Neal Comprehensive Cancer Center here at UAB in conjunction of Dr. Maria Pisu, who is in the Division of Preventative Medicine in the Department of Medicine here at UAB. This award is relevant and important because it supports really promising areas of research that affects particularly oncology care. And so it's notable that Dr. Liang has received this and it really leads to hopefully more funding, more research and more awareness. So welcome, Dr. Liang,

Dr Margaret Liang: Thanks for having me today.

Dr Huh (Host): So before we get into this actual term of financial toxicity, I want the audience and the listeners to understand that, you know, at least in the United States, based on my research is that personal bankruptcy and healthcare costs are closely associated. And in fact, I think the number one reason for personal bankruptcy is really due to rising healthcare costs. And this is kind of staggering because I think many of the people in the US know that our costs in healthcare are actually going up and not going down. So I think this is a topic that's highly relevant to our listeners today.

So somebody obviously coined the term financial toxicity. And I think it's a parallel to the chemotherapy toxicities that we have in the oncology world, where we talk about the side effects. So now, we're not just talking about the treatment side effects, we're talking about the cost side effects of some of the treatment decisions that are made both by patients, families, and their providers. So I just thought maybe you can comment further, Dr. Liang, about financial toxicity and why this is so relevant today in oncology and maybe in women's health.

Dr Margaret Liang: Yeah. So like you said, toxicity is the medical term for side effects of treatment. And I think this term was really important because it's really bringing awareness to providers to actively talk about this to their patients and bringing awareness to the greater community and advocacy efforts. In general, it's been around for probably five or ten years, but it's definitely a burgeoning. And it's estimated that 30% to 70% of cancer patients actually experience financial toxicity. This is specifically on oncology, but really there is actually a broadening field where they're investigating this in other chronic diseases, dementia, heart disease, et cetera.

And one of the interesting things, I think what you've been talking about recent trends nationally, specifically in the United States, is that when they've looked at out-of-pocket spending for patients, this has actually risen faster than the rate of inflation and actually nearly two times faster than patients' wages. So you can see that it's having an outsized impact on patients and their ability to get the adequate care and high quality care that they desire.

One of the reports that was actually released in the last year by Dr. Yabroff and all, it was a joint effort from the National Cancer Society, American Cancer Society, National Cancer Institute and Centers for Disease Control, they actually looked at out-of-pocket cost specifically, so patient-level costs, comparing cancer patients to patients who did not have cancer. And they actually found that in the initial phase of care, so for newly diagnosed cancer patients, these patients were spending over $2,200 more than similar non-cancer patients, again, in out-of-pocket costs and this was during their sort of initial diagnosis and treatment phase. In the surveillance or monitoring phase, cancer patients specifically with their out-of-pocket costs were paying up to $450 more per year. And in the end-of-life phase, it was even up to $3,000. You can see this can have a really enduring impact on patients, not just during treatment, but actually during monitoring, as this often can be treated like a chronic disease.

Another big trend that I think is interesting and is important to note is that not only are there increased cost sharing, so the proportion of healthcare costs in general that are being put onto patients rather than, for instance, payers or insurance companies or the government, is that prescription drug costs actually are similarly, especially for oncology drugs, increasing. So if you look at, for instance, ovarian cancer, since that's a cancer that I'm treating, there are really novel treatments like PARP inhibitors that have really changed the paradigm of how we treat ovarian cancer patients and really is actually extending patients' lives on the order of years. But these drugs in total costs like $13,000 to $15,000 per month. And depending on patient's insurance, et cetera, they actually may actually share a high proportion of these costs. You can see this could potentially be a barrier to patients getting the best possible cancer care.

Dr Huh (Host): Yeah. I mean, I think there's a lot to unpack there and one of the beliefs that patients have is that, when they have insurance, health insurance, they come in, they feel like they're going to be well covered. And I think we're learning that may be far from the case and that there are a lot of out-of-pocket expenses. They have a high deductible, et cetera. Some of the medications that we use now are oral. And so those are covered very differently than they are for drugs that are given through an infusion in our infusion unit. So the out-of-pocket responsibilities and liabilities to a patient and their families are pretty significant.

The other thing that you may want to comment on is that it's not just the deductibles, we're also talking about travel and lodging, but more importantly, I think this is an area of interest of yours is really the issue of being out of work and obviously not being able to work and their work is obviously tied into their health insurance. So I thought maybe you could just comment on your research in this area. What are you particularly looking at? And perhaps you can share with the listeners what you've learned from your research thus far.

Dr Margaret Liang: Yeah, I'd be happy to. So you're right, it's not just the out-of-pocket costs just for medical care. So those were traditionally copays, premiums, medications, but really also I think of it as nonmedical out-of-pocket costs, so transportation. Some patients stay, if they live far away, in a hotel potentially, especially if they're getting pretty intensive treatments like radiation, would be a common example. And then a lot of times our patients either because of the symptoms from their cancer or maybe they can't drive to their infusion visits because they might be drowsy due to some of the medications they're getting, we found from interviews that we've actually done with patients here in our research that caregivers really are actually are having a lot of what I would say are time costs. So time that they would be spending doing other things such as childcare, working, making an income to help support all of these monetary costs. And so it not only has an impact both on patients directly in their employment, but even actually their caregivers.

So some of the studies that we've done here have looked at both gynecologic cancer patients. And then there has been some research with Dr. Gabrielle Rocque looking at breast cancer patients. And we've tried to follow patients over time when they're starting treatment to get a better understanding initially about how frequent this problem of financial toxicity or financial hardship is affecting patients. In our own population here at UAB, we found that it's about half of patients are screening positive using sort of this validated patient-reported outcome tool that is 11 questions for financial distress. So I think that's a testament to the fact that, prior to all of this, we're probably underrecognizing this major problem that is actually impacting again almost one in two patients.

Interestingly, when we pulled our population here, as many may know, you know, we are a comprehensive cancer center, so lots of patients come from the entire state, but even states next to us. And so we found in the patients that participated in our study that patients on average were traveling eight hours from the time they were leaving the door of their house to returning back to their home. This may be including treatment time, but that's a really long time and takes the whole day where, again, patients or caregivers may not be able to be working. And then similarly, they're traveling up to a hundred miles just in one direction on average to come to see us.

In general, when we think about risk factors, like who's going to be the most at risk for experiencing financial toxicity, our study confirm other studies in other cancer types. So younger patients, and this may be because they're more likely to be working age and also they may not have Medicare insurance, which is a little bit more consistent insurance coverage, and patients with lower income, not surprisingly, were more likely to experience financial distress.

But just like you said, having insurance actually was not protective. So one would think that having insurance would prevent you from having financial hardship. But actually, we found that both groups are actually experiencing a great deal of financial toxicity. And so it's sort of a term that's been coined as underinsurance rather than being uninsured.

Dr Huh (Host): Yeah. I mean, I really think that's important for our audience to understand that just because you have health insurance does not mean that you're adequately insured and given the rising cost, particularly in oncology care, I think the listeners have to understand, you have to ask the question, "What is the impact to me financially or to my family by making certain choices?" And I can just tell you the scores of stories that I have of patients that have to take a second mortgage on their house to cover that cost. And you come to me and ask me, "Hey, is it worth my taking the second mortgage out? Because if you think this therapy is going to cure my cancer or control it, then it's worth it to me." And it's a really hard discussion. And, you know, on the flip side, I would argue that, yes, our patients and families don't understand this, but also I don't think physicians understand it very well. And in fact, I know that you probably agree that there needs to be a better campaign and educating providers on the importance of financial toxicity. So I thought you may want to briefly comment on that, Dr. Liang.

Dr Margaret Liang: Yeah. And I think building awareness clearly is the first step. And I think we're definitely getting there from that standpoint. And then making it sort of convenient and a standard part of comprehensive cancer care, that delivering, I think is going to be the next key. So you can think of that at a different level. So here at O'Neal Comprehensive Cancer Center, through the oncology care model, which is through Medicare, we actually have a pilot where we're actually screening all patients who are starting a new line of treatment for financial hardship again, like at the very beginning. That way, we can identify problems early and that it sort of normalizes the fact that this is an important component of care. The clinicians and care team really want to know about this problem, because there may be resources that the patient may be eligible for and we could help them with transportation, you know, the payment of high cost drugs, et cetera. And so kind of bringing it into the fold again is standard of care.

So I think by rolling that out at the health system level, that's going to make a really big difference. And we've been happy that there's been buy-in from the cancer center here to do that. And then I do think from a care team standpoint, recognizing that the oncologists do want to know this information. You know, there's sort of these myths that patients may feel, if they express that they have some financial concerns, maybe they're not going to get as adequate care, but sort of again, discussing that this is team-based care. Not only is there an oncologist and maybe a nurse practitioner on your team, but we do have social workers. We have financial counsellors. We have both lay and nurse navigators. And this whole team is really working to make sure that patients can deal not only directly with the symptoms of their cancer, the symptoms of their treatment that they may be on, but also sort of all the other logistical things that are just as important as far as their family life and work life.

So I think doing it at different levels of the health system, provider level, and then again, patient level is really going to be how we're going to address this at a larger level.

Dr Huh (Host): It's fascinating to me because we try to create all of these resources for patients and their families, but you're right. I mean, I think they're afraid to ask because they feel that it might affect their care at some point. I think the other element that is important that you mentioned is that for the medical provider community, I don't think that we're asking the question or counseling our patients and families enough that, "These are the risks, these are the benefits of a certain treatment choice. And by the way, this is what you should expect this to cost you," right? And so with those challenges of understanding with all the various insurance plans, and there are varying levels of coverage, it's hard to have that conversation. But maybe one day you and I will do a separate podcast for the provider community, but for, at least for the patients and the general public that are listening to this, you realize that we have a lot of great resources at UAB and the O'Neal Comprehensive Cancer Center, but we have a long way to go.

And the one thing I want the audience to understand is this is not just about the patient, right? So when the patient comes in, almost always, they have a friend or family member that comes with them. That person also indirectly experiences some level of financial toxicity because they may be taking the day off from work. And so there's a downstream cascade effect that I think that we are just starting to understand the impact of that.

So Dr. Liang, I'm just kind of curious, so tell me a little bit about what other questions do you think patients and their families should be asking their provider related to financial toxicity, irrespective of whether it's oncology or maybe just women's health in general?

Dr Margaret Liang: I think a few questions are, one, from either it could be an infusion drug, but you're right, it could be for a different chronic disease that's being managed, asking what the out-of-pocket cost may be and kind of what you've alluded to, sometimes the provider may actually not know this information because it's not very transparent, but at the end of the day, it really doesn't hurt to ask. An example is like prescription drugs. Sometimes there actually can be alternative drugs that are just as effective and maybe there's a generic, or maybe there's an assistance program if you prescribe a certain one. So I do think those are important questions for patients to ask when they're seeing their provider. And even if the provider doesn't know, at the end of the day, they're often going to look for resources on their healthcare team or the health system to help address that problem. So it's not going to go ignored.

I think like we've been talking a similar theme is really thinking about the time cost. And so I think an important thing to think about is upfront asking the provider or care team what's the treatment schedule for whatever treatment the patient's going to be undergoing, that can help people plan if they need rides or if they need to take time off work. I do think, and this is part of one of the interventions that we're studying in this study, the O'Neal Invests study that you mentioned, is educating patients about how can they take Family and Medical Leave Act benefits for them or their caregivers who might be eligible for social security disability, which can help with loss of income during treatment.

So I think those are things that we want the care team to be better equipped at talking to patients about. It's something that patients should feel comfortable asking their treatment team. And sometimes there can be changes again to treatment schedule as an example that may easily help things.

And then I do think those who are insured, it's really important to actually learn more about insurance. And again, that's actually something we're targeting from an educational standpoint in our study, but really learning about all the different terms you mentioned, deductible, premium out-of-pocket costs, and then I think some other things, which may be on the scope of this, but just some things for the listeners to think about, prior authorizations are a big thing, as far as who's going to get approved or not approved for treatment and that may impact the patient's out-of-pocket costs. Similarly being in and out of network, even more than ever really, you have to read some of the fine print and details about your insurance. And then similarly, for prescription drugs, there are actually different tiers. And depending on what tier drugs are on, cost may be more or less for patients specifically.

So I think at the end of the day, again, feeling more comfortable talking to this with their care team and sort of learning about these things will give patients and their families the skills to address this and make sure that they're getting the best care.

Dr Huh (Host): So aside from the resources that we have at UAB, are there other resources, websites that you would recommend to patients and their families that they can look at around this topic?

Dr Margaret Liang: Three good websites that I found to be helpful. So one is the Patient Advocate Foundation. So if you just Google that, they're an excellent resource for several reasons. So they don't focus just on cancer, they also look at other chronic diseases. They actually have a lot of educational information about some of the topics we talked about, how to learn about your insurance, what are some benefits if I'm working and I need to take time off of work. They actually have financial assistance programs that patients can actually directly sign up for or their care team can help them sign up for. So I think they're an excellent resource both from an educational assistance standpoint.

If the listeners want to Google cancer.net, they have a cost of care booklet, it's about 10 or 12 pages and has a lot of good information again written to the patient level. And then the last one is cancer.org. There's also a managing costs handbook. And they're pretty easy to Google. I did that earlier to make sure that it would be easier for the listeners to find.

And I think one other thing we haven't mentioned is really for whatever chronic disease or cancer that patients or their families may be facing, community or organizations like survivorship groups, caregiver support groups, those are actually really valuable resources. I found a lot of patients have actually told me, "Oh, I learned about this tip and trick to deal with the fact my out-of-pocket costs were really high. And then someone at my support group told me about this trick and, you know, I wouldn't have known about it." And then also there are also financial assistance programs often through these groups that patients can apply for who are having difficulty paying for their care. So I think that's another resource to look into for patients.

Dr Huh (Host): That's great. This has been fascinating and this is a topic that's obviously dear to me, because, working with you, Dr. Liang, over the last several years, it's kind of opened my eyes about the much needed funding to better understand how to assess financial toxicity, but to hopefully remedy it is obviously a big issue. I don't know if you have any other closing thoughts or comments that you wanted to share with the audience.

Dr Margaret Liang: The biggest thing is we're just advocating for patients and providers and health systems to really address this issue. I think it's only going to get worse if we don't take proactive steps. And so hopefully, this podcast is an example of ways that we can increase communication and discussion around it and help to problem solve.

Just the last plug, Dr. Pisu and in Dr. Barton who's at UT Health Sciences Center in Memphis actually just started a research network called the Emotional Well-being and Economic Burden Research Network. We actually want not just researchers and clinicians, but even patient advocates, caregivers, et cetera, to be sort of involved in this effort. And it's really trying to build research programs that can then inform public policy, because I think at the end of the day that's going to be what's required to really fix some of these problems and also be used for advocacy and sort of innovation in healthcare delivery. So if anyone is interested, the website is emot-econ.org. So, we'd appreciate if anyone wanted to look into that, but thank you so much for having me today.

Dr Huh (Host): This is great. And we'll get those links that you mentioned associated with this podcast so that people can see them and actually click on them.

One last comment, kind of tagging along on what you just said is I think that the one thing that's remarkable about Birmingham, but the entire state of Alabama, is really how thoughtful and giving the citizens of Alabama are in terms of helping their fellow individual. And this is not a problem that we're going to solve with one podcast for this year, this is going to be an ongoing challenge. And so I would ask the listeners and audience to recognize that it's really actually important that we provide support for those people in need. And so if you're interested in donating anything and supporting patients who are perhaps somewhat disadvantaged or in a very difficult financial situation, please consider giving to the O'Neal Comprehensive Cancer to their support fund because we use those monies very wisely and in a much needed way to support patients who get care here.

And similarly, I just want to shout out to the American Cancer Society because they have been providing this level of support to the O'Neal Comprehensive Cancer Center for many, many years now. And it has made an enormous difference, particularly with lodging with our Hope Lodge, as well as gas cards in terms of getting here and providing other assistance. So just think about it and, you know, I'll try to attach a link for those who are interested in giving.

So again, Dr. Liang, this is fantastic. And, you know, I really appreciate your sharing your expertise in this area of financial toxicity. I think it's very likely I'm going to wind up inviting you back in a couple of years to give us a further update in terms of what progress we made and what we've learned.

But again, this is a talk that is not just specific to women's healthcare, it's a topic that applies to all US citizens, men, women combined. So I just want to make sure that the listeners understand that.

So as always, please rate this podcast and we welcome any comments, particularly on topics that you're interested in. And if you're interested in learning more about financial toxicity and also the clinical services that UAB provides, please check out uabmedicine.org. But until next time, thank you and have a great day and wishing you all a very happy holiday. And we'll see you in 2022. Peace out.