Financial Distress for GU Cancer Patients: Insights from CDC Survey - Laura Bukavina & Steven Leonard
September 25, 2024
Ruchika Talwar interviews Laura Bukavina and Steven Leonard about their study on financial distress for genitourinary cancer patients. Using data from the CDC National Health Interview Survey, they explore how the rising costs of cancer drugs impact patients' financial well-being and access to care. The study reveals that GU cancer patients, particularly those with bladder and kidney cancer, struggle to afford mental health care and often delay dental care. Dr. Bukavina emphasizes the distinction between financial toxicity and financial distress, highlighting the need for expanded insurance coverage for mental and dental health services. The researchers stress the importance of implementing financial toxicity tumor boards, policy changes, and professional guidelines to address these issues. They conclude by urging urologists to actively inquire about patients' financial struggles and mental health needs, emphasizing the critical role of asking these questions in clinical practice.
Biographies:
Laura Bukavina, MD, MPH, MSc, Urologic Oncologist, Cleveland Clinic, Cleveland, OH
Steven Leonard, Medical Student, Drexel University, Philadelphia, PA
Ruchika Talwar, MD, Assistant Professor of Urology, Urologic Oncologist, and Associate Medical Director in Population Health, Vanderbilt University Medical Center, Nashville, TN
Biographies:
Laura Bukavina, MD, MPH, MSc, Urologic Oncologist, Cleveland Clinic, Cleveland, OH
Steven Leonard, Medical Student, Drexel University, Philadelphia, PA
Ruchika Talwar, MD, Assistant Professor of Urology, Urologic Oncologist, and Associate Medical Director in Population Health, Vanderbilt University Medical Center, Nashville, TN
Related Content:
Financial Distress in Genitourinary Cancer: Insights From CDC National Health Interview Survey.
Financial Toxicity Among Patients with Bladder Cancer - Deborah Kaye
AUA 2024: Determinants of Financial Toxicity in Patients with Urologic Cancer
AUA 2024: Beyond the Tumor: Exploring the Financial Toxicity of Non-Muscle Invasive Bladder Cancer in a Diverse, Urban Population
Financial Distress in Genitourinary Cancer: Insights From CDC National Health Interview Survey.
Financial Toxicity Among Patients with Bladder Cancer - Deborah Kaye
AUA 2024: Determinants of Financial Toxicity in Patients with Urologic Cancer
AUA 2024: Beyond the Tumor: Exploring the Financial Toxicity of Non-Muscle Invasive Bladder Cancer in a Diverse, Urban Population
Read the Full Video Transcript
Ruchika Talwar: Hi, everyone. Welcome back to UroToday's Health Policy Center of Excellence. As always, my name is Ruchika Talwar, and I'm a urologic oncologist at Vanderbilt in Nashville, Tennessee. Today I'm really excited to be joined by Dr. Laura Bukavina, who's a urologic oncologist at Cleveland Clinic, and Steven Leonard, who's a fourth-year medical student joining us from Drexel in Philadelphia. They're going to be sharing some work that they recently published looking at financial distress in GU cancer patients. Thank you both for joining us today. We really appreciate your time.
Laura Bukavina: Thank you for having us. Always a pleasure to be here with everyone from UroToday.
Steven Leonard: Yeah, thanks for having us. We're discussing today our study, which looked at financial distress in genitourinary cancer, and we used the CDC National Health Interview Survey to complete this study. A bit of background: We know that there were 207 new FDA approvals for cancer drugs between 2016 and 2021, and the price of these drugs really increased remarkably over that same period of time. Furthermore, we know that kidney, prostate, and bladder cancer are all among the top 10 most common solid organ malignancies. And so what does this mean for our GU cancer patients?
The brunt of the cost of these new innovations for these drugs is really being borne by our GU cancer patients, and so this can lead to the concept of financial toxicity, which has a couple different components to it. There are some indirect costs, which include payments for medications and co-payments for treatment and things like that, but there's also indirect costs in terms of lost wages from missing work to go to treatment centers. There's also indirect costs related to travel and hotel expenses, and then there's intangible costs which are a little bit harder to quantify, and those are things like psychological and emotional harm that comes from the diagnosis of a malignancy itself and then also trying to navigate the expense of drugs and treatments and things like that.
And so our question was, how does financial toxicity affect the population of GU cancer patients and how can we quantify that? As I mentioned, to complete the study, we used the CDC National Health Interview Survey. This is a survey that's completed every year. It has over 100,000 participants in 45,000 households, and we compared the respondents who reported a diagnosis of malignancy to those who didn't have any reported malignancy in the survey.
We divided the cohort into two age groups, 18 to 64 and 65 plus. And this is based on some prior research that shows that the responses to some questions in the National Health Interview Survey can differ between these age cohorts, mostly based on things like employment status versus retirement, and then also insurance coverage, whether people are transitioning to Medicare. We used data from 2008 to 2018. That's because 2008 was the first year that the information about financial toxicity was reported in the survey.
And so there were some findings, of course. Most importantly, we noted that GU cancer patients in the lower age cohort struggle to afford their mental health care. Bladder cancer was most pronounced, but also there were some significant findings for kidney cancer patients as well. We also noted that GU cancer patients with self-perceived poor health delayed certain aspects of their care, in this case dental care. And so, again, bladder cancer and kidney cancer were the two where we found significant findings in this regard. And so what's the significance of this?
We know that poor mental health is associated with increased mortality among certain populations of patients who are diagnosed with cancer, and we also know that financial distress can mediate their anxiety and depression and lead to poor quality of life, which ultimately will lead to increased mortality. And so patients who are struggling with anxiety and depression, they enter the clinic, they're faced with this diagnosis, and then they're forced to navigate the treatment landscape, whether that's paying for their medications, or as I mentioned before, co-payments and things like that. And so it can be difficult for patients who are in this situation with these medications and the increased costs, and ultimately this can lead to poor outcomes.
There's some things that are being done to address financial toxicity. Perhaps most importantly is the advent of certain things like financial toxicity tumor boards. These are groups of individuals including attorneys, financial advisors, nurses, social workers who come together and help patients with financial toxicity needs. And sometimes it's not pronounced or profound. Sometimes it's just a matter of making sure the proper form is completed to make sure that patients qualify for payment assistance programs or something like that. And then I think it's also important to note that policy changes need to be made to improve access to mental health services, to help patients gain access to the services that they need. And then we also need guidance statements from professional organizations to help make sure that financial toxicity is addressed in the clinical space and make sure that there's a platform for these discussions to occur between patients and their physicians.
Ruchika Talwar: Thank you so much. Really interesting findings, and so I want to dig in a bit to what you're describing, particularly in the bladder cancer space. We know that bladder cancer is obviously a very expensive disease state, both from an individual perspective as well as burden on the health system. But we also know that whether it's non-muscle invasive, muscle invasive, or advanced disease, it certainly has a high time toxicity burden for patients as well. So Dr. Bukavina, I'm curious, share with me your thoughts on what you observed in this study, particularly the higher burden on bladder cancer patients as compared to other GU cancers.
Laura Bukavina: Thank you so much. I wanted to just first clarify a couple of things from the presentation too. I think Steven did a fantastic job summarizing the findings, but there is a difference in terms of how we look at financial toxicity and financial distress. The financial toxicity is something that affects you and your financial situation directly. So the cost of medication, cost of prescription, seeing a doctor, co-pays, it's taking away time from you making money. The financial distress is sort of that indirect effect that the money actually makes on your health. So the decisions you make.
We often talk about patients who have significant financial toxicity make decisions to cut their pills, not go to the doctor, skip appointments because they need to work or childcare. So that's the distress that they're feeling because of the direct toxicity. Our study focused on sort of like the two aspects. It's difficult to sort of separate the two, but it's important to understand that the toxicity is immediate versus that the distress can happen 10 years after the treatment itself.
So what we know is that we are also focused on the cost of medications. We all went in thinking that these patients are going to be skipping their appointments to specialists or doctors or cutting their pills, not being able to afford prescription medication. But it was incredible that it's actually not true. According to these surveys, the patients are seeing their doctors, they are able to afford medications because their insurance coverage probably covers a lot of their medications. But what it doesn't cover well is mental health and dental health.
We all know we go to the dentist, our preventative services are covered, but if you have anything above that, you're paying $1,500, $2,000, $3,000 out of pocket for a crown or an implant or anything else. And that's a huge cost burden. A lot of these patients are older, a lot of these patients are taking medications that potentially could affect their dental health—think of our prostate cancer patients—and the insurance is not adequately covering any of that. That's one big problem, is that we need to be able to have certain guidelines for dental health coverage more than just preventative, but also expanding the coverage for our cancer patients.
The mental health component is very similar. If you have insurance, you're limited to four to five sessions of preventative mental health. But that's it. Same rules cannot apply for patients who are 20-year-olds, healthy, have no cancer, no depression, have good support system, and patients who are going through years and years of intravesical treatments, systemic treatments, are going through chemoradiation. Those patients cannot be fit into the paradigm of 'we only have coverage of this many sessions and everything else is outside of what we can cover.'
And that's where I think the guidelines and GU itself as urology, we don't necessarily have guidelines. NCCN put out some guidelines about recommendation for mental health and ASCO also strongly recommends mental health, but they're not necessarily guidelines. They're recommendations to have. So unless it actually makes into the guidelines, there's not going to be a push to change the backend of the insurance coverage for this.
Ruchika Talwar: Absolutely, and I think really, really great points. And I think that's where policy comes into play. You see, from a legislative perspective, certain states have mandated, for example, no cost sharing for PSA blood tests. I think, very similarly, advocacy efforts focused on legislative priorities that underscore and require—for example, spitballing here—like no caps on mental health services for cancer patients. We really need to see a dedicated effort there. So great points. As we start to wrap up here, I'm curious, Dr. Bukavina, what is your message for the urologic oncology community? What are the key takeaway points from this and what should we be doing differently in our patient population?
Laura Bukavina: I think the first step we have to do is ask. We don't ask enough. We have to ask, 'Are you struggling? Would you like to see a mental health provider? Are you having difficulty obtaining dental care services?' No urologist in there while seeing a patient ever asks that. I can guarantee you. But I think if you read our study, you understand it's important. I've actually referred about four patients of mine already to dental health providers just by asking the question. So one thing, if you remember from today's session, is just ask and then they'll answer.
Ruchika Talwar: Absolutely. Absolutely. Well, congratulations to you both on this important work. We certainly need to be having more conversations to highlight some of these really pressing issues that face our patients.
Laura Bukavina: Thank you for having us again.
Steven Leonard: Yeah, thank you.
Ruchika Talwar: And to our audience, thanks again for tuning in. We'll see you next time.
Ruchika Talwar: Hi, everyone. Welcome back to UroToday's Health Policy Center of Excellence. As always, my name is Ruchika Talwar, and I'm a urologic oncologist at Vanderbilt in Nashville, Tennessee. Today I'm really excited to be joined by Dr. Laura Bukavina, who's a urologic oncologist at Cleveland Clinic, and Steven Leonard, who's a fourth-year medical student joining us from Drexel in Philadelphia. They're going to be sharing some work that they recently published looking at financial distress in GU cancer patients. Thank you both for joining us today. We really appreciate your time.
Laura Bukavina: Thank you for having us. Always a pleasure to be here with everyone from UroToday.
Steven Leonard: Yeah, thanks for having us. We're discussing today our study, which looked at financial distress in genitourinary cancer, and we used the CDC National Health Interview Survey to complete this study. A bit of background: We know that there were 207 new FDA approvals for cancer drugs between 2016 and 2021, and the price of these drugs really increased remarkably over that same period of time. Furthermore, we know that kidney, prostate, and bladder cancer are all among the top 10 most common solid organ malignancies. And so what does this mean for our GU cancer patients?
The brunt of the cost of these new innovations for these drugs is really being borne by our GU cancer patients, and so this can lead to the concept of financial toxicity, which has a couple different components to it. There are some indirect costs, which include payments for medications and co-payments for treatment and things like that, but there's also indirect costs in terms of lost wages from missing work to go to treatment centers. There's also indirect costs related to travel and hotel expenses, and then there's intangible costs which are a little bit harder to quantify, and those are things like psychological and emotional harm that comes from the diagnosis of a malignancy itself and then also trying to navigate the expense of drugs and treatments and things like that.
And so our question was, how does financial toxicity affect the population of GU cancer patients and how can we quantify that? As I mentioned, to complete the study, we used the CDC National Health Interview Survey. This is a survey that's completed every year. It has over 100,000 participants in 45,000 households, and we compared the respondents who reported a diagnosis of malignancy to those who didn't have any reported malignancy in the survey.
We divided the cohort into two age groups, 18 to 64 and 65 plus. And this is based on some prior research that shows that the responses to some questions in the National Health Interview Survey can differ between these age cohorts, mostly based on things like employment status versus retirement, and then also insurance coverage, whether people are transitioning to Medicare. We used data from 2008 to 2018. That's because 2008 was the first year that the information about financial toxicity was reported in the survey.
And so there were some findings, of course. Most importantly, we noted that GU cancer patients in the lower age cohort struggle to afford their mental health care. Bladder cancer was most pronounced, but also there were some significant findings for kidney cancer patients as well. We also noted that GU cancer patients with self-perceived poor health delayed certain aspects of their care, in this case dental care. And so, again, bladder cancer and kidney cancer were the two where we found significant findings in this regard. And so what's the significance of this?
We know that poor mental health is associated with increased mortality among certain populations of patients who are diagnosed with cancer, and we also know that financial distress can mediate their anxiety and depression and lead to poor quality of life, which ultimately will lead to increased mortality. And so patients who are struggling with anxiety and depression, they enter the clinic, they're faced with this diagnosis, and then they're forced to navigate the treatment landscape, whether that's paying for their medications, or as I mentioned before, co-payments and things like that. And so it can be difficult for patients who are in this situation with these medications and the increased costs, and ultimately this can lead to poor outcomes.
There's some things that are being done to address financial toxicity. Perhaps most importantly is the advent of certain things like financial toxicity tumor boards. These are groups of individuals including attorneys, financial advisors, nurses, social workers who come together and help patients with financial toxicity needs. And sometimes it's not pronounced or profound. Sometimes it's just a matter of making sure the proper form is completed to make sure that patients qualify for payment assistance programs or something like that. And then I think it's also important to note that policy changes need to be made to improve access to mental health services, to help patients gain access to the services that they need. And then we also need guidance statements from professional organizations to help make sure that financial toxicity is addressed in the clinical space and make sure that there's a platform for these discussions to occur between patients and their physicians.
Ruchika Talwar: Thank you so much. Really interesting findings, and so I want to dig in a bit to what you're describing, particularly in the bladder cancer space. We know that bladder cancer is obviously a very expensive disease state, both from an individual perspective as well as burden on the health system. But we also know that whether it's non-muscle invasive, muscle invasive, or advanced disease, it certainly has a high time toxicity burden for patients as well. So Dr. Bukavina, I'm curious, share with me your thoughts on what you observed in this study, particularly the higher burden on bladder cancer patients as compared to other GU cancers.
Laura Bukavina: Thank you so much. I wanted to just first clarify a couple of things from the presentation too. I think Steven did a fantastic job summarizing the findings, but there is a difference in terms of how we look at financial toxicity and financial distress. The financial toxicity is something that affects you and your financial situation directly. So the cost of medication, cost of prescription, seeing a doctor, co-pays, it's taking away time from you making money. The financial distress is sort of that indirect effect that the money actually makes on your health. So the decisions you make.
We often talk about patients who have significant financial toxicity make decisions to cut their pills, not go to the doctor, skip appointments because they need to work or childcare. So that's the distress that they're feeling because of the direct toxicity. Our study focused on sort of like the two aspects. It's difficult to sort of separate the two, but it's important to understand that the toxicity is immediate versus that the distress can happen 10 years after the treatment itself.
So what we know is that we are also focused on the cost of medications. We all went in thinking that these patients are going to be skipping their appointments to specialists or doctors or cutting their pills, not being able to afford prescription medication. But it was incredible that it's actually not true. According to these surveys, the patients are seeing their doctors, they are able to afford medications because their insurance coverage probably covers a lot of their medications. But what it doesn't cover well is mental health and dental health.
We all know we go to the dentist, our preventative services are covered, but if you have anything above that, you're paying $1,500, $2,000, $3,000 out of pocket for a crown or an implant or anything else. And that's a huge cost burden. A lot of these patients are older, a lot of these patients are taking medications that potentially could affect their dental health—think of our prostate cancer patients—and the insurance is not adequately covering any of that. That's one big problem, is that we need to be able to have certain guidelines for dental health coverage more than just preventative, but also expanding the coverage for our cancer patients.
The mental health component is very similar. If you have insurance, you're limited to four to five sessions of preventative mental health. But that's it. Same rules cannot apply for patients who are 20-year-olds, healthy, have no cancer, no depression, have good support system, and patients who are going through years and years of intravesical treatments, systemic treatments, are going through chemoradiation. Those patients cannot be fit into the paradigm of 'we only have coverage of this many sessions and everything else is outside of what we can cover.'
And that's where I think the guidelines and GU itself as urology, we don't necessarily have guidelines. NCCN put out some guidelines about recommendation for mental health and ASCO also strongly recommends mental health, but they're not necessarily guidelines. They're recommendations to have. So unless it actually makes into the guidelines, there's not going to be a push to change the backend of the insurance coverage for this.
Ruchika Talwar: Absolutely, and I think really, really great points. And I think that's where policy comes into play. You see, from a legislative perspective, certain states have mandated, for example, no cost sharing for PSA blood tests. I think, very similarly, advocacy efforts focused on legislative priorities that underscore and require—for example, spitballing here—like no caps on mental health services for cancer patients. We really need to see a dedicated effort there. So great points. As we start to wrap up here, I'm curious, Dr. Bukavina, what is your message for the urologic oncology community? What are the key takeaway points from this and what should we be doing differently in our patient population?
Laura Bukavina: I think the first step we have to do is ask. We don't ask enough. We have to ask, 'Are you struggling? Would you like to see a mental health provider? Are you having difficulty obtaining dental care services?' No urologist in there while seeing a patient ever asks that. I can guarantee you. But I think if you read our study, you understand it's important. I've actually referred about four patients of mine already to dental health providers just by asking the question. So one thing, if you remember from today's session, is just ask and then they'll answer.
Ruchika Talwar: Absolutely. Absolutely. Well, congratulations to you both on this important work. We certainly need to be having more conversations to highlight some of these really pressing issues that face our patients.
Laura Bukavina: Thank you for having us again.
Steven Leonard: Yeah, thank you.
Ruchika Talwar: And to our audience, thanks again for tuning in. We'll see you next time.