Podcast | Bladder Cancer Medical Bills: A Toxic Side Effect

August 5, 2025

Transcript

Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I am also a survivor of muscle-invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network or, as many call it, BCAN, producers of this podcast.

I’m pleased to welcome today’s guest, Dr. Ruchika Talwar. Dr. Talwar is a urologic oncologist at Vanderbilt University Medical Center and medical director in the Episodes of Care Office, where she leads an operationalizes Vanderbilt University Medical Center’s specialty value-based care programs, including Medicare. Dr. Talwar’s clinical practice includes both robotic and open approaches to urologic cancer surgery with a focus on patient-centered care. Her academic work in health policy, drug pricing, and costs of care has been published in several JAMA journals and the Journal of Clinical Oncology. She makes several trips a year to Washington D.C., meeting with congressional representatives as a passionate advocate for improving the quality of care provided to patients in the United States.

Dr. Talwar, I want to thank you for joining our podcast.

Dr. Ruchika Talwar:

Thanks so much, Rick. It really is a pleasure to be here.

Rick Bangs:

So I want to start by talking about the term financial toxicity because it means different things to different people. So how would you define a financial toxicity?

Dr. Ruchika Talwar:

Yeah, it’s a great question. The background behind financial toxicity really stems from the fact that out-of-pocket costs for patients tends to under-represent the total economic burden that patients face while receiving cancer care. And what I mean by that is it’s often the financial impact of being a cancer patient sometimes can’t be captured just by looking at the amount of money that you’re paying at the doctor’s office.

So we came up with this term financial toxicity, which is a patient-reported outcome measure that can be, by the textbook, defined as the harm caused by patients from the cost of their care. And the reason it’s important to define financial toxicity in this way is because the harms encompass both the objective financial burden as well as the subjective financial distress that can be associated with being a cancer patient. That burden, that objective cost tends to represent dollar amounts, but the distress is the subjective impact. So how does financial toxicity affect patient satisfaction, quality of life, anxiety, all these other domains that aren’t necessarily a number figure?

Rick Bangs:

And toxicity is like side effects or drugs have toxicities or side effects, so it’s kind of akin to that.

Dr. Ruchika Talwar:

That’s right, that’s right. The point is, it’s a toxicity from the fact that you’re a cancer patient. It’s not a weakness of the patient. It’s not the patient has done anything to put themselves in this situation, and so that’s why I like to use the term toxicity because it really is a consequence of the cancer.

Rick Bangs:

Exactly. Okay. So now patients would be familiar with costs that they pay to the doctor, to the hospital, to the pharmacy, and they would be familiar with things like co-payments and co-insurance and deductibles. So those are some of the obvious things that patients bear and tend to be the top of mind, but those aren’t all the costs we incur as patients. So can you talk about some of the nonmedical costs that generate financial toxicity, and how substantial are they?

Dr. Ruchika Talwar:

Yeah, that’s a great point, and I think that just underscores the importance of grouping all of these things together under the umbrella term of financial toxicity.

So those costs that are not as obvious, I like to think about them as indirect costs, and those can often include travel time. Patients need to take time off of work to attend appointments. There may be expenses or wages lost from taking time off of work. You can imagine if you require significant amounts of time in a healthcare setting, you may be eating into your paid time off or your sick leave, so that often comes with less money earned. So although it’s not taking money out of your account directly, it’s less money going into your account.

There’s a lot of other things I want to mention here. There’s stress from navigating and coordinating care. There’s decreased work productivity. So let’s say you’re in a work environment that gives you compensation tied to productivity measures. It’s not unreasonable for you to be less productive because you’re really faced with this major health issue, so that falls here. I mean, let’s think about early retirement due to illness. All of that is in this category.

One other thing I think that’s pretty important to mention here is that financial toxicity also encompasses caregiver burden. And so even if you’re not the cancer patient, if your loved one, if your family member, if someone that you support is a cancer patient, you may need to be the person that’s available to take the patient to those appointments or to get the patient to and from their procedures if they’re undergoing anesthesia and they can’t drive. And so I want to just stress that this financial toxicity term can go beyond just an individual patient.

Rick Bangs:

Yeah, so we have to kind of think of it as a family unit, right?

Dr. Ruchika Talwar:

Yeah, that’s right.

Rick Bangs:

Okay, so now we focus here on bladder cancer, the bladder cancer community. So are bladder cancer survivors more prone to financial toxicity? And if so, why would that be? What are some of the typical costs that a patient might experience as part of a bladder cancer diagnosis and treatment?

Dr. Ruchika Talwar:

Yeah, bladder cancer survivors are certainly more prone, and the reason for that is we know that evidence tells us bladder cancer is America’s most expensive cancer per patient. And so that’s something important to emphasize here. This is a big-ticket item when it comes to the amount of money that patients and the healthcare system in general is paying. There has been multiple studies that have demonstrated spending averages well above $100,000 for patients who have even just localized bladder cancer.

You asked where are those expenses coming from? Where are those costs coming from? Well, bladder cancer has pretty intensive surveillance. You need to undergo frequent cystoscopies and imaging. And we know that in patients who have non-invasive bladder cancer, up to 60% of the costs stem from the fact that you’re paying co-pays at each visit for each cystoscopy. You’re getting routine imaging tests that need to be paid for. It may require you to take time off of work to make it to those appointments.

And I really have to mention the fact here that we’re in an exciting time in terms of drug discovery. There are a ton of new agents coming out to treat BCG-unresponsive non-muscle-invasive bladder cancer, but the prices of those drugs are quite expensive. They can be somewhere in the $200,000 to $600,000 per year range. And even if you’re well-insured-

Rick Bangs:

Wow.

Dr. Ruchika Talwar:

… insurance is only going to cover some of that. The patient is going to have to make sure that they’re meeting their deductible. There may be some degree of co-insurance. And so I think we’re going to see this problem come to the forefront of bladder cancer care pretty quickly as more and more of these agents get approved.

Now, there’s a lot of data actually looking, that’s in the non-invasive space, but there’s a lot of data looking in muscle-invasive bladder cancer, trying to quantify how expensive it is to be a bladder cancer patient. And the costs that I was able to find for trimodal therapy and for radical cystectomy are also hundreds of thousands of dollars. And in fact, radical cystectomy tends to be a little cheaper, but some figures have quoted about $200,000 of healthcare expenditures for a patient undergoing radical cystectomy as compared to almost $400,000 for trimodal therapy.

There are several studies out there quoting different numbers. I think what’s important is not to focus on the exact number because that’s not necessarily the number the patient is seeing on their bill, but just to understand that this disease has a significant impact in the amount of money we pay as Americans for bladder cancer care, and obviously that’s going to translate to a significant cost for the patient.

Rick Bangs:

Okay. So let’s talk about who’s impacted by financial toxicity. What’s the profile of somebody who would be impacted?

Dr. Ruchika Talwar:

Yeah, it’s a good question. So I want to start off by saying everybody is vulnerable to financial toxicity. All patients can potentially face some degree of this, right? Because we know every patient’s going to get a bill, every patient is required to pay certain amounts of co-pays or cost sharing or things like that, but there are certain people who may be more affected by it.

And so there’s this study that was done by the group at UNC, Dr. Angie Smith was the senior author. It was published in the Journal of Urology in 2018. And that group looked at their specific subset of patients seen at their institution and assessed financial toxicity scores, and they were able to find that about 25% of bladder cancer patients reported financial toxicity. It was a small group of patients, only about 138. So I think in reality, the number could potentially be higher in the general population, but it’s a good starting point. So about 25% in that study reported financial toxicity. And those who more frequently reported financial toxicity, those patients were younger, they tended to be minority patients, and potentially less educated than patients who perhaps didn’t report financial toxicity.

So I’d say the data suggests that those certain groups may be more prone, but again, I just want to stress it can certainly impact many different groups. Perhaps the patient themselves is not facing a lot of financial toxicity, but maybe their caretaker is. You know?

Rick Bangs:

Sure, right.

Dr. Ruchika Talwar:

And so I don’t know that we do a great job of capturing this from a data perspective.

Rick Bangs:

Wow. Yeah, but even one in four, that’s a significant chunk of people.

Dr. Ruchika Talwar:

It is. It is.

Rick Bangs:

Okay. So for somebody who’s experiencing financial toxicity, how bad is it when you get it?

Dr. Ruchika Talwar:

I’d say it probably is one of those things that you don’t notice the warning signs always because it starts out slow and it can be subtle. The first few times you have to call out of work, it may not be that disruptive or you may not notice the first few charges that you’re being sent, but once you accumulate all of this interaction with the healthcare system, the bills add up, the time off of work adds up. The caregiver is being pulled once a week for every six weeks potentially to take somebody for intravesical therapy.

And so it may not hit the day you get your cancer diagnosis, but the special thing about bladder cancer, particularly non-invasive bladder cancer, is that the monitoring schedules are pretty intense. For patients on BCG, they need to get six rounds of BCG for their first induction course, and then they’re continuing BCG for years after their initial course, so it adds up. It is long, lots of visits required, lots of cystoscopies or office procedures required, and so it sneaks up on you.

Rick Bangs:

Yeah, and there’s certainly lag between the time you get the treatment and it goes through, if you’ve got insurance, goes through your insurance company and then you’re asked for the co-payment.

Dr. Ruchika Talwar:

That’s right. That’s right. There’s a big lag. And so you may be getting a bill for something that happened almost a year ago, and you’re thinking, “Why do I have to pay thousands of dollars? I haven’t budgeted for this,” and it can be really difficult.

Rick Bangs:

Right, right, right. Because it’s not like you can get a full estimate of what your out-of-pocket’s going to be when you start out. It’s not like getting your car worked on in the sense that, at some point, you’re going to get an estimate and it’s pretty quick.

Dr. Ruchika Talwar:

Exactly. And you know, let’s think about the fact that deductibles reset.

Rick Bangs:

Ah, right.

Dr. Ruchika Talwar:

And so you may be totally fine on December 30th, but then on January 5th, you get a huge bill and your deductible reset and you weren’t expecting it. It’s a very difficult system to navigate.

Rick Bangs:

Right, right. So collectively in the US, what are we seeing? What’s the collective impact of financial toxicity?

Dr. Ruchika Talwar:

Across the country, the collective impact is quite large. Recent reviews that have been published have actually demonstrated up to 54% of US cancer patients experience some degree of financial toxicity one way or another.

And another common misconception is that this issue only exists among people who potentially don’t have insurance, and that’s not the case. Even among those who are well-insured, a significant amount of people still report financial hardship due to bills because they are still paying those medical bills. And there’s been some interesting survey data from the past decade that has told us that about 30% of cancer patients can have difficulty paying some of those bills, around 50% were worried about affording their care, and this is what worries me the most, about 10% actually delayed or skipped medical care because of cost concerns.

Rick Bangs:

Oh, yeah.

Dr. Ruchika Talwar:

And so that’s what I really worry about is that what is the impact this is having on cancer outcomes? So although this is not necessarily exactly related to patients’ oncologic outcomes, their risk of recurrence, risk of progression, it can still significantly influence how people end up doing. So you could do everything right, but if you’re having trouble paying your bills and you skip one round of ECG or one cystoscopy or one scan, that may really set you back.

Rick Bangs:

Yeah, yeah. So you talked about it sneaking up on folks. Are there some indicators that I might watch for along the way?

Dr. Ruchika Talwar:

Yeah. I mean, I think recognizing the fact that when you’re facing a bladder cancer diagnosis, you’re going to be required to interact a lot with the healthcare system, even if it’s not just your doctor. It might be a scan, it might be other testing. Recognizing that is important and being open with your support system, whether it’s your family members, maybe it’s friends, trying to understand the impacts that it might have.

But I think in terms of indicators, really, again, it’s hard when those bills pile up, when you’re recognizing that time off of work, your paid time off rather, has essentially been depleted. Those are some indicators. If you’re looking at your office visits and they’re always on weekdays and you need to be off every Tuesday, for example, to get your intravascular therapy, you’re not seeing those bills right away, you’re not recognizing the lost income, it all kind of sneaks up on you later. So paying attention to some of those signals, I think, is important. Those are leading indicators.

The lagging indicators are more of the you’re shocked by the out-of-pocket costs that you’re paying, the income hits, your earnings are dropping. That’s really difficult.

Another thing to mention is some people have to go through their savings to pay for cancer care. And so as your savings kind of evaporate, then what’s left sometimes people have to take debt on to be able to pay these bills. And so you’re noticing that your savings are starting to get depleted, your debt’s piling up. That’s not a scenario that we want anyone to be in.

And so all of this to say, if you find yourself facing some of these indicators, I mean, I think it’s really important to talk to your doctors. It’s really important to talk to your doctors. We know that the majority of patients want to be able to discuss these kinds of financial concerns with their physicians, but they don’t. They don’t. And I’d really encourage folks to be open about some of those struggles. I know that patients don’t want to bring money into the picture. They don’t want to feel that they’re not getting the best possible care due to a financial barrier, but there are things that your doctor can do, even if they don’t know the exact information, there’s resources out there. They could put you in touch with a financial counselor or potentially find a drug that is covered under your insurance plan or may be available, we’ll talk about this more later, but may be available through an alternate source for cheaper.

So just I’d really encourage people to be open about their struggles, have some of those difficult conversations with your doctors because they want to help you.

Rick Bangs:

Okay, so now let’s talk about some things that we can do to prevent it. If I’m a patient, what might I do to either, or maybe not even, maybe sometimes not prevent it, but to minimize it, to make it less impactful?

Dr. Ruchika Talwar:

To lessen the impact, yeah, that’s right. I think again, just having open, honest communication, conversation with your healthcare teams is important.

There are some new interesting resources that are available to patients when it comes to some of their prescription drug costs that I think we should make sure people are aware of. Often if you use online pharmacies, like Mark Cuban Cost Plus Drugs, it’s a lot cheaper to get some of your oral medications outside of your insurance benefit. If you just pay cash on some of these online pharmacies, talked about Cost Plus, Amazon Pharmacy, there’s others, you can potentially save hundreds and thousands of dollars. So looking outside of the traditional pharmacy, the brick-and-mortar pharmacy where you used to fill your drugs, is one way to do it.

For patients who are on Medicare, there’s been some recent legal changes that have helped cap out-of-pocket costs for patients when it comes to some of their drug spend, so I think that’s been a positive change. And there’s also now the ability to spread out your payments for your drugs across the course of a year as opposed to need to pay for it all at once. So I think both of those are helpful.

The group out of Michigan has put out resources helping patients understand the Medicare Part D Plan Finder, which can also help select a prescription Part D plan that actually minimizes the co-pays of drugs that you’re spending a lot of money on. So I think those are some tangible resources.

A lot of this burden is going to fall on our politicians to help recognize that this is a problem, and I do a lot of work trying to advocate for positive healthcare changes, and this is always top of mind for me and very relevant in our conversations with folks in Washington D.C. So lately there’s been a lot of focus on lessening prescription drug costs and also reducing healthcare expenditures in general, and so I’m optimistic when I look to the future that the fact that the conversation has started tells me that people are paying attention. I do think a lot of the burden’s going to fall on policymakers to recognize that we want Americans to be as healthy as possible, and we’re not going to be able to do that if these amazing new agents are costing $200,000, so I think we’re going to have to see some changes there.

Rick Bangs:

Yeah, I mean, we can have great agents, but if people can’t access them because they can’t afford them, it kind of misses the point.

Dr. Ruchika Talwar:

Exactly, exactly.

Rick Bangs:

So you talked about discussing it with your doctor, is that the first step? If I think I’m going to face or I’m already facing it, it seems like that would be the critical first step. Is there anything else we’re missing? Pharma programs, for example, any?

Dr. Ruchika Talwar:

That’s right. I think number one, talk to your physician, be open, be honest. Ask about programs that are out there that may exist to help alleviate some of this. You mentioned pharma programs. So pharmaceutical companies often have ways to be able to provide co-pay support to patients. Sometimes that comes in the form of a gift card that you can use to pay your co-pay. Sometimes they’ll give you coupons. So really seeking those out are important.

A lot of health systems now have dedicated financial counselors who can help you understand what out-of-pocket costs you may face for services before you even get them. So it’s worth considering if you’re going to have a big hospitalization for surgery coming up and you’re not really sure what the financial impact of that hospitalization is going to be, see if the hospital resources, financial counselors can help you with that.

And I already talked about the Plan Finder. I think that’s another great resource for patients on Medicare to try to minimize the amount they’re paying for certain prescription drugs.

Rick Bangs:

Okay, so let’s summarize. If I want to learn more, where do I go?

Dr. Ruchika Talwar:

I wish I had one single resource that I could give to patients. I think start, for patients on Medicare, looking up that Medicare Part D Plan Finder is critical. I’d highly recommend everyone explore that option because it’s an easy way to pick a specific plan that will directly reduce the amount of money that you’re paying for the drugs that tend to be the most expensive for you.

Medicare also has a lot of great resources out there to better understand how to spread out your payments over the year, which will be a helpful way to avoid a big, lump-sum payment.

I know that, over time, there’s been resources through our organizations, the American Urological Association, but also ASCO, the American Society of Clinical Oncology. They’ve devoted a lot of resources to help educating patients on financial toxicity. So I’d also recommend patients check out some of those websites. And I know that folks listening to this podcast are certainly familiar with BCAN. I believe there’s also a 1-800 number that patients can reach out to.

Rick Bangs:

That is correct. That is correct. And in fairly recent last couple of years, so that’s another resource to start the process.

Dr. Ruchika Talwar:

Yeah.

Rick Bangs:

Okay. Any final thoughts?

Dr. Ruchika Talwar:

I think that financial toxicity is a big problem. It’s a big problem. It affects patient outcomes. We have not spent enough time and resources thinking about this issue. There’s been a lot of focus over the past several decades on drug discovery and other aspects of improving cancer outcomes, but I’m thrilled to be here today to shed a little bit of light on this problem. And I’m also really heartened by so many physicians who share this interest and share a passion for trying to ensure that patients not only have the best cancer outcomes, but also have a better experience in getting healthcare.

I really encourage folks to, again, be open, be honest. It can be really embarrassing, and there’s a stigma associated with having difficult conversations as they relate to being able to afford healthcare costs. It is not your fault.

Rick Bangs:

No.

Dr. Ruchika Talwar:

It is never a patient’s fault. It is a reflection of a broken system. And so this is all of us failing our patients, and so we want to team up and tackle this problem together, and so communication is the first step there.

Rick Bangs:

Excellent, excellent. Good advice. Dr. Talwar, I want to thank you for helping us understand financial toxicity in the bladder cancer community and providing some guidance on how to prevent and address it.

If you would like more information on bladder cancer, please visit the BCAN website, www.bcan.org. In case people would like to get in touch with you, could you share a Twitter handle or an email address?

Dr. Ruchika Talwar:

Absolutely. I am active on Twitter, and now also known as X, and my handle is at my first and last name, that’s @RuchikaTalwarMD.

Rick Bangs:

Could you spell that out just so you can-

Dr. Ruchika Talwar:

Absolutely. It’s not an easy one, I know that.

Rick Bangs:

Yes.

Dr. Ruchika Talwar:

So it’s at R-U-C-H-I-K-A-T-A-L-W-A-R-M-D.

Rick Bangs:

Excellent. Thank you. I’m sure you’ll get some followers as a result. Thanks.

All right. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226.

That’s all the time we have today. Please like, comment, or subscribe so that we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Dr. Talwar.

Dr. Ruchika Talwar:

Thank you.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network, or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.