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Ruchika Talwar: Hi everyone. Thanks for joining us today. My name is Ruchika Talwar. And I'm honored to bring you some more health policy content for our UroToday viewership. Today I'm joined by Ben Stone who's a urologic oncology fellow at Harvard. Thanks Ben for joining us.

Benjamin Stone: Thank you for having me. It's great to be here.

Ruchika Talwar: We're going to discuss a little bit about the work that you've done in financial toxicity. Tell me a bit about the background and what led you on this path.

Benjamin Stone: Financial toxicity is a topic that I think is increasingly written about and studied now, and rightfully so. I think of it as the undue cost and financial burden associated with treatment of cancers. And I've gained a lot of interest in financial toxicity.

It started in residency, some work we did at Vanderbilt with the CEASAR cohort looking at the treatment burden of prostate cancer, especially the subjective burden of cost associated with treatment for localized prostate cancer. And we've really been able to expand upon that work, not only in prostate cancer but in bladder cancer as well.

Ruchika Talwar: Yeah. I think you're right. It's such an important topic, one that was pretty much neglected for a long time. And we've recently seen the effects of that on patient care, especially because prescription drug costs are just rising. It's becoming a huge burden. The work that you're presenting here at this meeting really centers around this idea of catastrophic healthcare expenditures. Can you tell me what that means?

Benjamin Stone: Absolutely. And first I agree with you. I think it is very important to know that financial toxicity now has correlations not only in the patient experience and the survivorship experience but really in clinical outcomes. And we know that patients with cancer are more likely to declare bankruptcy. And cancer patients who declare bankruptcy are more likely to die earlier of their cancer.

So we wanted to look a little bit more about the survivorship experience. And one way to do that was looking at catastrophic healthcare expenditures. And so this is a definition put forth by the Commonwealth Fund that is greater than 10% of a household income being spent on out-of-pocket cost of treatment within a given calendar year. And so that's the metric that we used in this study.

Ruchika Talwar: Yeah. That's a big number. And so who's at risk for this? Is it patients who are underinsured, who are uninsured? Who do you really see this as a challenge for?

Benjamin Stone: It's a great question, and that's what we sought out to find out. We looked at patients with prostate cancer and patients with bladder cancer, survivors anywhere in their survivorship continuum, either immediately after treatment or well into their survivorship experience. And we found some surprising things. Some were not surprising. We know bladder cancer survivorship is a very costly malignancy to manage given surveillance cystoscopies, intravesical treatments, repeat imaging. We knew that bladder cancer survivors would have high rates of ongoing financial toxicity.

But which patients are at the highest risk for financial toxicity? Some of it is not surprising, older patients, patients with increasing comorbidities. But we found some surprising things like private insurance. We thought that patients who are well insured, who have either employer based insurance or other private insurance plans shouldn't face too much of undue burden. But those are the patients that actually had the highest risk of catastrophic expenditures.

Ruchika Talwar: Interesting, interesting. It's shocking because you think those are the patients who are paying into the system and they should have coverage. That definitely raises a bunch of red flags. Tell me more about the data set you used in this study.

Benjamin Stone: We use the medical expenditure panel survey. It's an annual survey conducted by ARC that surveys about 13 to 15,000 households and as many as 30,000 individuals per year. It's a pretty robust data set and it really asks patients about the financial experience of their interactions with the healthcare system, including treatment of cancer.

One other interesting thing we found was it wasn't just the interaction between insurance and comorbidities and age with catastrophic expenditures, but there was actually a different effect of cancer survivorship based upon patient race. White patients with bladder cancer had no increased odds of catastrophic expenditures. But Black patients with bladder cancer had six times the odds of catastrophic expenditures.

Ruchika Talwar: Wow. That's a big difference.

Benjamin Stone: It's a costly malignancy to manage. But there is something about the survivorship experience that the cost seems to be unduly experienced by minoritized populations.

Ruchika Talwar: Got it, got it. Yeah, very concerning and something that we should off the bat bring up with our patients so they're prepared. We've talked a bunch about bladder now. Tell me what your findings were in the prostate space.

Benjamin Stone: With prostate, we actually, we were able to use a different data source within the medical expenditure panel survey that asked patients really nuanced questions about the subjective experience of cancer survivorship. Instead of only looking at catastrophic expenditures, really the out-of-pocket costs of treatment, we were able to look at subjective experience, the subjective burden, the worry about being able to cover medical expenses and also coping mechanisms.

We got from the database data on our patients skipping physician visits. Are they not filling their prescriptions? Are they refusing treatment because of the cost of care? And we found high rates of all of the above in the prostate cancer survivorship cohort. As many as 14% of prostate cancer survivors report refusing treatment or refusing physician visits, or choosing not to have their cancer treated due to worries about the cost of care.

Ruchika Talwar: Wow. Again, some really concerning data. In that space, were there differences based on patient characteristic, again, going back to race ethnicity?

Benjamin Stone: There were. But one of the most striking things we found that it was flipped from the objective catastrophic expenditures. Older patients, patients who were sicker were at increased risk for out-of-pocket costs. In the prostate cancer population, we found that when we got into the subjective experience, it was working age men with private health insurance plans or the ones that had the highest levels of anxiety about their ability to pay.

Ruchika Talwar: Interesting. You know what? And I wonder if a part of that is just not being ready for a diagnosis like that or illness. I think it's a lot harder for people who are still in the workforce to cope with a cancer diagnosis.

Benjamin Stone: Exactly. And I think it sheds light on the indirect cost of care where it's not all about the out-of-pocket costs that patients are paying for their treatment, but it's time off of work and missed wages. And especially if you think about employer-based insurance plans, a lot of patients who report work changes have increasing anxiety about their ability to pay.

Ruchika Talwar: I know within the Medicare expenditure panel survey that you used, one of the limitations really is the fact that you don't get granular information about disease state, for example, stage of diagnosis, how long they've been getting treatment, et cetera. But tell me are there any other limitations with this data set?

Benjamin Stone: That's certainly a big one and it really is a survivorship cohort. We're able to adjust for time since treatment. And not surprisingly in prostate cancer, we found that closer proximity to treatment conferred a higher risk of greater expenditures of catastrophic healthcare expenditures. Patients who are immediately in the phase of being diagnosed and treated are paying more for their care.

But it's patients who are undergoing active surveillance surgery, radiation, they're really all combined into one survivorship cohort limitation of the data set. But it does let us speak in broad strokes about the survivorship experience.

Ruchika Talwar: Yeah. What's next for urologists? What can we do to help deal with some of these important issues and integrate changes to our clinical practice to help perhaps ease the burden of financial toxicity?

Benjamin Stone: That's the key question. I think financial toxicity research in urology is really in the early stages. Now where we're trying to point at which patients are at the highest risk to suffer financial toxicity. But that's obviously just the first step of pointing to the issue. But what can we do about it?

There's exciting research that has shown that financial navigators getting paired with patients at the time of diagnosis can really help with both the objective and subjective experience of survivorship in terms of the economic impact on families. I think that's one. I think there's really a need for financial navigation in addition to other helpful navigation that occurs through the oncologic spectrum of patients, caring patients from diagnosis to work up in treatment and then follow up in survivorship.

In addition, we found that of our prostate cancer survivors, only 12% of them had a physician discuss the cost of care in detail.

Ruchika Talwar: Wow.

Benjamin Stone: We're not discussing it well enough with our patients to set the stage for what to expect. And so I think there's room for us to do a better job of discussing the risks with patients. We have some idea of which patients are at highest risk for financial toxicity, and so we can screen them at the time of diagnosis for which patients we think may need more assistance getting through the process from a financial perspective and pairing patients with a financial navigator. I think hopefully that's where we're headed to ease some of the burden of cost.

Ruchika Talwar: Yeah. All really great points and something that I hope that our audience takes to heart, because I certainly will. For you in this space, what's next? Obviously you have an interest here. What are you hoping to accomplish with further investigations?

Benjamin Stone: I think there are now some validated measures to look at financial toxicity in patients. And so that's really the next step is to go into implementation and come up with strategies like we talked about like financial navigation and try to figure out how to best implement strategies to really make a dent in the burden experience by patients.

Again, I think this is the early stage necessary phase of research to identify who needs the most assistance. But now we have to spring into action and devise some processes to implement and see what works and see how we can reduce the burden.

I do also think there's a policy perspective. We know that patients with private insurance plans have the highest out-of-pocket costs and the highest financial toxicity. And so I think the converse of that is that extending the reach of public insurance plans seems to shield patients from some of this cost. And so I think there certainly is an angle towards public policy and trying to protect patients from some of these costs.

Ruchika Talwar: Yeah, I couldn't agree more. Thank you so much for taking time to chat with us today. Congratulations on this amazing work. And I can't wait to see what's next.

Benjamin Stone: Thank you, Ruchika.