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المحتوى المقدم من ASCO Journals and American Society of Clinical Oncology (ASCO). يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة ASCO Journals and American Society of Clinical Oncology (ASCO) أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.
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Debt or Dying: The JCO OP Financial Toxicity Special Issue

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Manage episode 462198356 series 9911
المحتوى المقدم من ASCO Journals and American Society of Clinical Oncology (ASCO). يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة ASCO Journals and American Society of Clinical Oncology (ASCO) أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.

Host Dr. Fumiko Chino sits down with co-editor and health outcomes researcher Dr. Ryan Nipp, and contributing author Dr. Kelly who is living with metastatic breast cancer to have a candid conversation about financial toxicity, the lived experience for patients, and what we can do to move the needle on affordability in cancer care.

TRANSCRIPT

The disclosures for guests on this podcast can be found in the show notes.

Dr. Fumiko Chino: Hello and welcome to the inaugural episode of Put into Practice, the podcast for JCO Oncology Practice. I'm Dr. Fumiko Chino, an Assistant Professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity.

In today's episode, we'll be highlighting the special issue of JCO OP focused on financial toxicity. I'm delighted to serve as an editor for this special issue, and I'm overjoyed to welcome two guests who were instrumental in creating the issue. The first is my co-editor, Dr. Ryan Nipp. He's a Medical Oncologist focused on GI cancers at the University of Oklahoma Stephenson Cancer Center, where he also does cancer outcomes research. I'm also pleased to welcome Dr. Kelly Shanahan, who is an author of a narrative piece for this issue. Dr. Shanahan was a practicing OB/GYN in Lake Tahoe, California when she was diagnosed with stage 2B breast cancer in 2008. She has now been living with metastatic breast cancer since 2013 and serves as a patient advocate and research advisor.

Our full disclosures are available in the transcript for this episode and we're all already agreed to call ourselves by our first names for the podcast today.

Kelly and Ryan, so great to speak with you today.

Dr. Kelly Shanahan: Likewise, Fumiko.

Dr. Ryan Nipp: Thank you so much.

Dr. Fumiko Chino: To start us off, I'd love to just set the scene about financial toxicity, our topic. Ryan, do you mind sharing an overview of financial toxicity, what it is, what it isn't, and how you got involved in this type of research?

Dr. Ryan Nipp: Absolutely. Thank you. So I always start with the idea that the NCI website, I remember when this came out a few years ago, they provide some helpful information on this topic. The definition that they provide I think works nicely. It states that financial toxicity describes the issues patients may have related to the cost of medical care. The high cost of medical care, in addition to the cost for missed work, loss of employment and travel and lodging for care, can cause financial problems and may lead to debt and bankruptcy. Financial toxicity can also affect a patient's quality of life and access to medical care. For example, a patient may not take a prescription medicine or may avoid going to the doctor to save money. Research also suggests that patients with cancer are at risk for experiencing financial toxicity potentially greater than people without cancer or other medical issues. Financial toxicity is also sometimes called financial burden, financial hardship, financial distress, financial stress, economic burden, and economic hardship. So it goes by a lot of different names.

Throughout my career and my research to date, I developed an interest in financial toxicity as I'm particularly interested in improving care delivery and outcomes for patients impacted by cancer and this continually became an issue as I was growing and training in oncology, noticing that the financial toll of having a cancer diagnosis can be remarkably problematic and concerning for our patients. Thus, I wanted to find ways to study this issue and ultimately develop strategies to address the problem.

So just to give a little bit of background on the current JCO OP special issue, we wanted to do this special issue for numerous reasons. We're fortunate to work at JCO OP or work with JCO OP, JCO Oncology Practice which has a unique interest in this topic. We've been working to address this issue of financial toxicity throughout our careers, I say me and Fumiko, and we felt that the current time represented a unique opportunity to take a look back and see what progress has been made, also, what problems are persisting. We are extremely proud of this special series as we've had numerous unique viewpoints captured and I think this series provides a relatively comprehensive overview of the current state of the science in this field related to financial toxicity and oncology.

And looking back over our notes over the past couple of years, while we were planning this issue back in the summer of 2023, we had wanted to have a broad array of articles specifically focusing on the state of the science of financial toxicity, understanding the health insurance landscape, health policy issues related to this, cost of care discussions, social determinants of health, financial assistance programs, and financial navigations. We also wanted some unique perspectives on financial toxicity with regards to geriatric oncology, a global and international perspective, and we wanted to have as many articles as we can relate to the patient perspectives on this topic, which we’ve got very fortunate for. Specifically we wanted one to give an overview of the foundational work in this field. Number two, highlight knowledge gaps that still exist. And number three, compel the field forward to encourage interventions and innovations necessary to move oncology into a more equitable and affordable space. We are blessed to have so many phenomenal colleagues that were willing and able to share their experiences, expertise and insights for this special issue. So thank you. It was a long winded answer, but I'll stop there.

Dr. Fumiko Chino: I Love it. I 100% agree with you. I feel so blessed to have worked on this issue and it really is sort of where we are now, how did we get here, and what the future should hold, how can we be doing better for financial toxicity.

Now, Kelly, your piece “Debt or Dying?” was a real highlight of the issue for me. Do you mind speaking on the lived experience of financial toxicity and how costs have really unfortunately driven some of your treatment decisions and your options?

Dr. Kelly Shanahan: Yeah, thank you Fumiko. Thank you, number one, for inviting me to contribute to this issue and for your kind words about my piece. I come from a place of privilege. I was a physician when I was diagnosed, but both with early stage and metastatic cancer. Yet I still suffered significant financial impacts. When I was early stage, I had the option, obviously, of either a lumpectomy with subsequent radiation therapy or a mastectomy. Well, I live at Lake Tahoe where we have zero oncology services at my end of the lake. And so for me to have a lumpectomy, I would have to drive 45 minutes to an hour each way, five days a week for radiation therapy, for, at that time, five to seven weeks. We didn't have accelerated courses of radiation back in 2008. I had a then nine-year-old and I was in solo private practice. So if I had chosen radiation therapy, that would have been time away from my practice, loss of income, having to make sure my husband or somebody else could pick up my daughter. So I chose to have a mastectomy and that was my primary reason for choosing that type of surgery.

Then five years later when I was diagnosed with metastatic breast cancer, again, no oncology services in my town, except for someone I was ironically subletting my office to one day a week who recommended combination IV chemo, hoping to get me closer to the starting line so I could perhaps live longer. My daughter at that time was in 10th grade, a sophomore in high school, and I would have done absolutely anything to try to make it to her high school graduation. So I did the chemo which included a taxane, which left me with permanent chemotherapy induced peripheral neuropathy.

Now, it's a little challenging to be an OB/GYN with numb fingers because I know I wouldn't want somebody trying to catch my baby or wielding a very sharp scalpel over my anesthetized body who had trouble feeling their fingers. So I had to stop practicing medicine, which was a huge, huge impact. I will remain eternally grateful to the men I started in practice with way back in 1991 when I finished residency for insisting that I get a disability policy because that is the only reason that my family did not have to declare bankruptcy was the fact that I had a long term disability policy. But it still made a lot of impacts on things we chose to do. I remember I was diagnosed prior to the advent of CDK4/6 inhibitors and I was diagnosed early stage, prior to the advent of the Affordable Care Act, which was a whole other thing. But I remember thinking, “Oh, my gosh. If I have to go on a CDK4/6 inhibitor that's going to cost $15,000 a month, I'm going to have to pay a 20% co-pay.” And that's a choice between putting that towards my daughter's college education. I would have chosen not to take that medication. Those are huge things, and that seems cheap.

Now, I am currently on a medication that was approved a year ago that is $28,000 a month. Fortunately, I have Medicare due to disability. I'm still not quite old enough for Medicare, that covers my expenses. I met that $3,400 medication deductible within the first month of being on that medication. But that has eased the financial burden. I also chose to participate in a clinical trial last year when my cancer progressed. And I live in a ski resort town 200 miles away from a major academic medical center. So it was 200 miles each way to participate in this clinical trial. And again, I had the wherewithal to be able to put a hotel or an Airbnb on my credit card, to pay for the gas and then wait for reimbursement. Not everybody can do that. We wonder why we can't accrue to clinical trials. We wonder why we don't have the diversity that we want. Well, these sorts of financial issues are part of the reason.

Dr. Fumiko Chino: Thank you so much for that overview of what you've had to deal with during the course of your disease treatment and that realization that, ‘oh, this is with privilege’ that I know what struck a chord with me as a cancer caregiver.

I was brought into the field of financial toxicity as being the primary caregiver of my husband. He was diagnosed with cancer, again before the Affordable Care Act, and we had these caps on his health insurance payouts. And so we ran up against his lifetime payout cap and essentially had to pay everything out of pocket after that. And even just for people with long disease courses or who were treated before the Affordable Care Act, they've seen a huge sea change in terms of financial toxicity. But sadly, the Affordable Care Act hasn't made actual cancer care necessarily more affordable as we continue to produce more effective treatments, but they come at these great expenses. And I think we are now at, I would say a liminal point where we're at accelerating drug discovery and also accelerating costs.

One of the reviews in this special issue focuses on the social and legal needs. Things like housing or food insecurity, transportation barriers, unemployment and psychosocial needs. They have a bidirectional impact on financial toxicity. And Dr. Hussaini and his team really put together a nice overview on this topic for the issue. Kelly, I know you've already spoken a little bit about this, about the transportation barriers, about the difficulties being unemployed. Again, coming from that position of privilege, can you talk about how hard it's been to even just navigate the healthcare system even with your incredible knowledge base as a physician expanding on what was hard for you, if it might have been harder for other people within the larger community of people with metastatic disease?

Dr. Kelly Shanahan: Yeah, I mean, I'm a physician and I know the healthcare system and I had a hard time figuring things out. And some of this, I realize now, when I was a practicing physician, I didn't know what things cost because what things cost depends on what your insurance is. And that's true of the cost of an office visit, of a procedure and of medications. That was challenging as a patient knowing who to call to find out to get a patient assistance program. And then when you have Medicare, again, whether it's because of age or because of disability, you hear all these things about, “Call company X if you need financial support for our great drug,” but that's not accessible if you have a federally funded insurance. So I think that was really challenging to figure that out.

Fortunately, a great clinical pharmacist at UCSF really helped me with that process. And I think that's something that we don't realize as patients is there are other resources. Our doctors don't know all the nuances of the financial aspects. If you are being treated at a larger academic medical center, there should be a financial navigator. But considering the fact that most people with cancer are treated in the community, and especially if you're treated in a private practice versus one that might be affiliated, let's say with a community hospital, they may not have an oncology social worker, they may not have a navigator. And I really wish there were more programs available like the one at Levine Cancer Institute that has a financial navigation program, a multidisciplinary program to help patients. There are a lot of resources available to patients.

I am on the board of directors of METAvivor. Our primary focus is raising money for metastatic focused research. We fund research, but we also offer resources that we can connect people with on our website, connect them to places where patients can get financial help. There is a fabulous organization, the Lazarex Foundation, which used to provide financial support to help people do a clinical trial, support for housing, support for transportation. And I know their funds are limited and that has sort of gone by the wayside, and that's really unfortunate because we want more people to participate in trials.

And I think we have to move away from this, “Oh, yeah. We, the pharmaceutical industry, the sponsor of the clinical trial. We’ll reimburse you.” Number one, they do not tell you that upfront. I knew that. I know that from the relationships I have with some people in the FDA. I know that that is allowed. So I specifically asked about that. But most patients don't know that. And I think any patients that might listen to this, if you're contemplating a clinical trial, upfront say, “I know that reimbursement for my travel related expenses and trial related expenses are allowable under FDA guidance. So how are we going to do that?”

But I also think that this needs to be not retrospective, not a reimbursement, but for a lot of people it needs to be an upfront payment. Even things like to cover the Uber for them to get from where they live on one side of a major city to the cancer center on the other side. So we need to do that. And recently, at the San Antonio Breast Cancer Symposium, in a session for advocates with the FDA, I asked that question: Does the FDA preclude payments before the fact? Do you consider that inducement? And the answer was “No”. There's no rule that says you can't do that. So again, we as patients need to be educated that there are resources available to us and don't take ‘no’ for an answer.

Dr. Fumiko Chino: I love all that information. And I know certainly when I was a caregiver, when my husband was sick, we had evaluated all the clinical trial options and found one that was potentially an option for him in California. But the travel expenses were too great for us to overcome the upfront cost because at that time he was out of work, I was out of work, we were both out of work, we had no income coming in. And so those travel expense barriers were one of the main reasons why it was a non-starter to even think about the clinical trial enrollment for him. It's just depressing to think that that could have made a difference. But I know that clinical trials work. That's how we discover new treatments.

Dr. Kelly Shanahan: Yeah, and the more people that participate and the more diverse a population– If the only people doing clinical trials are old white women, then how do we know it's going to work for young black women and men or other ethnic groups? We need diversity so that we know how the drugs work, what side effects they have in diverse populations.

Dr. Fumiko Chino: Now, Ryan, I want to pull you into this. What have you found can be helpful to help assist patients who may be struggling with their social or legal needs or even just having difficulties making ends meet?

Dr. Ryan Nipp: Yeah, Kelly, I had worked in the past too with Lazarex Foundation and found them to be phenomenal and the opportunity to get more patients onto clinical trials was a no-brainer and such a valuable resource.

So I think for this question, I do love this question, I think it depends as Kelly was kind of hinting at too. It depends on insurance, depends on the person, depends on the specific needs. But again in thinking about this, I think there's some growing evidence supporting things like financial navigation. Like you said Kelly, not every place has it. I'm actually very fortunate now at our cancer center in Oklahoma, we do have financial navigators and I always thought that was extremely forward thinking for them. We also have great social work assistance, knowing that that's a limited resource, but we have amazing social workers which I often sometimes get their expertise and help for this. There's some research out there showing that financial assistance with things like travel, lodging and co-pays could be beneficial for our patients. Again, trying to find those resources and is it sustainable? That is a tough question.

We also have an article in this special series focused on financial assistance programs by Dr. Raghavan which is phenomenal. It's an editorial on this topic I would encourage people to look into when this comes out. I've also just lastly admired recent work that shows that there's an intervention that, I think, I'm not quite remembering where it was tested, but it's a financial hardship screening intervention where they were asking people about financial hardship and then over time were able to find that by just asking and then bringing in whatever resources might be available, this could address the issue of financial toxicity in that study and it was an extremely impressive compelling outcome with that kind of a model. What I think is the future is that we need to continue to see those types of models put into routine practice and how can we actually implement those in our day to day practice. But that to me was very promising when that came out in recent years.

Dr. Fumiko Chino: Absolutely. I think you're referring to Dr. Blinder's piece in JCO from last year.

Dr. Ryan Nipp: Yes.

Dr. Fumiko Chino: Dr. Blinder was one of my amazing colleagues at MSK before I transitioned down to Texas.

Dr. Kelly Shanahan: Yeah, and Dr. Blinder is working on a new proposal. I am one of the advocates on that proposal again about the financial screening. And again, just even asking the question can make a difference.

Dr. Ryan Nipp: Yup.

Dr. Fumiko Chino: Absolutely. I know you both kind of pointed out that there are limited resources, but this idea that it's sort of depressing that someone who might be in need will not actually get the assistance from their physician or their physician team or their cancer center, but they'll have to reach out to other patients, and I'm so glad that that information is being shared. But it seems like we could be doing better. More orderly assistance, more navigation, more direct help to patients who actually need it in the way that they need it because it's not one size fits all.

Now, switching topics just a little bit, I had the pleasure of working with Dr. Littman, who is a resident at NYU, on a review in this issue about the role of cost conversations to decrease financial toxicity. And I know from my own prior research that only about 5% of oncologists say that they've had any training on discussing costs and that cost conversations seem to be rarely happening in clinical practice. Certainly from my own perspective as a cancer caregiver, I can say that cost conversations, despite incredible financial toxicity from my husband's treatment, were just not being had. Now, Kelly, have you ever had a discussion about cost with your treating team?

Dr. Kelly Shanahan: I have never had my treating team ever bring up costs. Now, as I mentioned before, when at one point I was contemplating going on a CDK4/6 inhibitor, I did say, “If I need to go on a CDK4/6 inhibitor now with this huge co-pay, I'm not going to do it.” But I didn't get that, “Oh, here's some resources that we can have.” I was sort of like, “We'll figure that out. You don't need it right now.” And fortunately, I did not need it until I was able to get on an assistance program and then had Medicare. So it wasn't prohibitively expensive. Although I did fall into that catastrophic donut hole one year. That was not fun.

But I think this is something that we patients talk about frequently. People, they're worrying about paying their bills, about paying their medical bills, do they pay their hospital bill or their doctor's bill or do they buy food? Do they pay their utility bill or do they pay the co-pay for their medication? And we should not, in the supposedly richest country in the world, be having to have these conversations. We share resources about people who have unused medications. If you have progression of your cancer and you have to switch medications, but you still have two months of a three-month supply, how can that be legally distributed to other patients? And there are organizations that can do that. We try to let people know about that. But yeah, patients frequently talk about this. It's so heartbreaking when someone has to do a GoFundMe to pay for their medical care or to pay for their funeral or the funeral of a loved one.

Dr. Fumiko Chino: Yeah. My standing joke, which is not really a joke, it's more of a ‘ha-ha sob’, is that GoFundMe is actually the US's largest cancer insurance provider, which is fundamentally very depressing. And I think one of the points that you pointed out about just even just eliminating waste- so if I have a drug that I'm no longer using, how do I donate that to the next needy person? When my husband died from cancer, we had a supply of Zofran that we had paid very dearly for. He was past his pharmaceutical benefit. We were paying $35 a pill. This is when Zofran ondansetron was still on patent. And I was like, these pills are very expensive. And I turned them over, actually, to my mom who's a physician to distribute in her clinic because I wanted people to not have uncontrolled nausea. I know now, working at world leading cancer centers that there's no actual way of doing that here, but a community cancer center can do it. I think we just- trying to get more efficient all across the board is so important.

Now, Ryan, how do you broach the topic of affordability with your patients? Do you try to preemptively discuss costs or really just wait for when there seems to be a problem with affordability?

Dr. Ryan Nipp: Yeah, I knew this was coming up. I think it's a bit of a touchy topic at times because you don't want to presume and like to bring it up. In some ways, there's this option of, at least in Oklahoma now, where people are traveling a long distance often to see us here in Oklahoma City. And so sometimes you can just start to broach the idea of like how much trouble was it to get here? Do you think you'll be able to make these trips every two weeks? That two hour drive, how's that going to be? But in general, I think I am talking more in recent years about the issue of financial toxicity. I agree with Kelly. It's rare when it does come up, but in recent years it's coming up slightly more often than maybe zero like it used to be. And I think, for one, it's because patients are bringing it up more. I think they're feeling more empowered to talk about it. It's more you're able to have that opening to bring this up to me. I would welcome the opportunity. Of course, I'm passionate about this topic. And then second, I think there's increasing awareness of the available resources. There actually are things that are being studied and there may be options. Whereas in the past, perhaps we were totally just at a loss, like if our patients would bring it up, we would feel awful for them, but there wasn't a lot we could offer. And again, in Oklahoma now, we have phenomenal social work that is available to us at all times, as well as that financial navigation as I was hinting at before.

But also, Kelly, you mentioned this before and thinking about this, the fact that we have clinical pharmacists in clinic with us that are just sitting right next to us in clinic has been a priceless resource for me. I found their insights and expertise to be very helpful in finding ways to address financial toxicity. Are there other ways that we can help this person? They brought up that this new anticoagulation pill that they're getting is super expensive. What can we do to help them? Things like that. They're with me. They're willing to look into are there other things that we could be doing again? Also at University of Oklahoma, when I got here, actually, they were already doing some work on this idea of financial toxicity screening, meaning: Can we preemptively be asking patients about their financial hardship or financial needs? And then when things are identified, again, we have cancer center navigators who are available to us for those positive screens to help put people on whatever paths we have available to address those things.

Again, in our special series that we have coming out in JCO Oncology Practice, we have a few articles that also talk about this idea of utilizing screening tools and questionnaires to identify patients who may be at risk for financial toxicity. And then some of the work that's growing with regards to once you identify somebody who screened positive, what to do with that positive financial toxicity screen.

Dr. Kelly Shanahan: And you know, you bring up that idea of bias and stigma, and I think that can be easily eliminated by asking every single patient. Doesn't matter whether somebody rides the bus in or they roll up in a Rolls Royce. If we ask every single person: Are you having any financial hardships related to your cancer treatments? Then we normalize it, we remove that stigma, and then we can help more people.

Dr. Fumiko Chino: And I've definitely seen that, I'm sure, from your own practice as an OB/GYN, like STI screening, we ask every single person about STI screening and it's not targeted towards youth. We ask everyone in a cancer center for falls. Have you had a fall? That's just part of our routine screening. So I feel like integrating one or two questions about financial toxicity could be a real avenue for helping identify financial toxicity earlier. Hopefully, intervening before it gets to the point at which it's end stage of financial toxicity, so to speak, when people are not showing up for their appointments anymore at all.

Now, we're heading towards the final part of our conversation today. I just wanted to give a little bit of space for open topic conversation. Is there anything that you feel like we really just should address for the future of financial toxicity? Whose voices are here, whose aren't? How do we make actual meaningful change to stop describing the problem but actually start to fix the problem?

Dr. Kelly Shanahan: Well, I certainly think the payers need to be pulled into the mix because they're the ones that are leading to denials. They are the ones that are requiring prior authorization for antiemetics for highly emetogenic chemotherapy. So I think they need to be pulled into the mix. I think our physicians, our care team, need to be pulled into the mix as well as the patients and caregivers.

Dr. Fumiko Chino: Ryan, anyone that you want to have more involved in this conversation, any way to expand it?

Dr. Ryan Nipp: You mentioned it there at the end, Kelly, is the caregiver. I think we haven't done a lot of work looking at that. Again, back to the research part and describing the issue, we haven't really done a lot looking at the caregiver side. The other piece that I think as we were putting together this special series was the international global perspectives that we did have a little bit of trouble trying to find. It's just different across different geographic and global areas so that's something else that should be studied more. We kind of hinted at it today, this idea of pharmacists being involved. We haven't seen a lot of work in that space. The other thing to think about is, at least in the places where I've practiced the APPs or the individuals seeing our patients a lot of the time and also empowering them to bring this up and have some tools and just bringing them into the research realm and to future intervention development.

The last thing I'll say, because we have brought it up a few times today, but I do think a wide open area is what do we do about clinical trials and the affordability of being on a clinical trial and making that more available or able for patients to be going onto clinical trials. I think that's an interesting space to continue to research.

Dr. Kelly Shanahan: Yeah. Step number one, every single patient with advanced cancer should be offered a clinical trial. Again, no assumption should be made. And number two, we need to make it so that everyone can afford to, time wise, money wise, to participate in clinical trials. It was a great privilege. I am so grateful that I was able to do a clinical trial and I look forward to doing others in the future.

Dr. Fumiko Chino: Absolutely. I really think that this idea of travel burden is such a huge barrier for many of our patients for getting even standard of care treatments, but much less enrolling on a clinical trial. And every piece of data that I've ever seen shows that you will actually get more enrollment and a more diverse patient population on your clinical trials if you just open the clinical trial closer to where the patients are actually living and getting their cancer treatment. So decentralized trials or trials within community practices, trials within the NCORP or the NCI's Community Cancer Center, or even again within regional centers affiliated with academic medical centers. These are always, I feel like, decreasing that travel burden.

Dr. Kelly Shanahan: And I just thought of one really simple way to decrease financial burden on patients. Just going for tests, imaging, doctor's visits - a patient should never have to pay for parking.

Dr. Fumiko Chino: Now, you're beating a drum that I can dance to. The parking ridiculousness. It led to, honestly, I think, at this point probably my most read research topic, which was just evaluating parking costs. And it is such a stupid thing to study. The fact that parking could be a barrier to receiving optimal medical care is so frustrating, infuriating if nothing else. And yet it is so common. I saw it in my practice in New York where they just couldn't afford to travel into Manhattan for anything that had to be done on the main center. It's a ridiculous barrier.

Dr. Kelly Shanahan: $5 an hour to park at UCSF to go see your doctor, get imaging, or get labs.

Dr. Fumiko Chino: Absolutely. And the funny thing is that the travel and the parking then must be balanced with the time toxicity, which is consolidating all appointments down could at least decrease your parking costs. But then you're literally at the cancer center the entire day and then you need to buy your lunch at the cancer center or you missed out on another day of work potentially. And so really thinking about this from a very patient centered framework is so essential to just move forward. And it's one of the reasons why I've been so honored and privileged to collaborate with patient advocates like Dr. Shanahan.

Well, I will wrap it up. I want to thank you so much for having such a robust conversation today about such an important topic. I can't really think of a better focus for our first podcast issue. I really want to thank both of our guests and also our listeners for your time today. You can find links to the papers that we discussed in the transcript of this episode. And if you value the insights you hear on the JCO OP: Put into Practice podcast, please take a moment to rate, review and subscribe wherever you get your podcasts. As a new podcast, we really do depend on you, the listeners, to spread the word that we're out there and we'll hope that you join us next month for our second episode. Until then, please stay safe and warm in 2025.

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. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Disclosures:

Kelly Shanahan:Consulting or Advisory Role: Pfizer, SeaGen, Sermonix Pharmaceuticals, Jaguar Health/Napo pharmaceuticals

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المحتوى المقدم من ASCO Journals and American Society of Clinical Oncology (ASCO). يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة ASCO Journals and American Society of Clinical Oncology (ASCO) أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.

Host Dr. Fumiko Chino sits down with co-editor and health outcomes researcher Dr. Ryan Nipp, and contributing author Dr. Kelly who is living with metastatic breast cancer to have a candid conversation about financial toxicity, the lived experience for patients, and what we can do to move the needle on affordability in cancer care.

TRANSCRIPT

The disclosures for guests on this podcast can be found in the show notes.

Dr. Fumiko Chino: Hello and welcome to the inaugural episode of Put into Practice, the podcast for JCO Oncology Practice. I'm Dr. Fumiko Chino, an Assistant Professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity.

In today's episode, we'll be highlighting the special issue of JCO OP focused on financial toxicity. I'm delighted to serve as an editor for this special issue, and I'm overjoyed to welcome two guests who were instrumental in creating the issue. The first is my co-editor, Dr. Ryan Nipp. He's a Medical Oncologist focused on GI cancers at the University of Oklahoma Stephenson Cancer Center, where he also does cancer outcomes research. I'm also pleased to welcome Dr. Kelly Shanahan, who is an author of a narrative piece for this issue. Dr. Shanahan was a practicing OB/GYN in Lake Tahoe, California when she was diagnosed with stage 2B breast cancer in 2008. She has now been living with metastatic breast cancer since 2013 and serves as a patient advocate and research advisor.

Our full disclosures are available in the transcript for this episode and we're all already agreed to call ourselves by our first names for the podcast today.

Kelly and Ryan, so great to speak with you today.

Dr. Kelly Shanahan: Likewise, Fumiko.

Dr. Ryan Nipp: Thank you so much.

Dr. Fumiko Chino: To start us off, I'd love to just set the scene about financial toxicity, our topic. Ryan, do you mind sharing an overview of financial toxicity, what it is, what it isn't, and how you got involved in this type of research?

Dr. Ryan Nipp: Absolutely. Thank you. So I always start with the idea that the NCI website, I remember when this came out a few years ago, they provide some helpful information on this topic. The definition that they provide I think works nicely. It states that financial toxicity describes the issues patients may have related to the cost of medical care. The high cost of medical care, in addition to the cost for missed work, loss of employment and travel and lodging for care, can cause financial problems and may lead to debt and bankruptcy. Financial toxicity can also affect a patient's quality of life and access to medical care. For example, a patient may not take a prescription medicine or may avoid going to the doctor to save money. Research also suggests that patients with cancer are at risk for experiencing financial toxicity potentially greater than people without cancer or other medical issues. Financial toxicity is also sometimes called financial burden, financial hardship, financial distress, financial stress, economic burden, and economic hardship. So it goes by a lot of different names.

Throughout my career and my research to date, I developed an interest in financial toxicity as I'm particularly interested in improving care delivery and outcomes for patients impacted by cancer and this continually became an issue as I was growing and training in oncology, noticing that the financial toll of having a cancer diagnosis can be remarkably problematic and concerning for our patients. Thus, I wanted to find ways to study this issue and ultimately develop strategies to address the problem.

So just to give a little bit of background on the current JCO OP special issue, we wanted to do this special issue for numerous reasons. We're fortunate to work at JCO OP or work with JCO OP, JCO Oncology Practice which has a unique interest in this topic. We've been working to address this issue of financial toxicity throughout our careers, I say me and Fumiko, and we felt that the current time represented a unique opportunity to take a look back and see what progress has been made, also, what problems are persisting. We are extremely proud of this special series as we've had numerous unique viewpoints captured and I think this series provides a relatively comprehensive overview of the current state of the science in this field related to financial toxicity and oncology.

And looking back over our notes over the past couple of years, while we were planning this issue back in the summer of 2023, we had wanted to have a broad array of articles specifically focusing on the state of the science of financial toxicity, understanding the health insurance landscape, health policy issues related to this, cost of care discussions, social determinants of health, financial assistance programs, and financial navigations. We also wanted some unique perspectives on financial toxicity with regards to geriatric oncology, a global and international perspective, and we wanted to have as many articles as we can relate to the patient perspectives on this topic, which we’ve got very fortunate for. Specifically we wanted one to give an overview of the foundational work in this field. Number two, highlight knowledge gaps that still exist. And number three, compel the field forward to encourage interventions and innovations necessary to move oncology into a more equitable and affordable space. We are blessed to have so many phenomenal colleagues that were willing and able to share their experiences, expertise and insights for this special issue. So thank you. It was a long winded answer, but I'll stop there.

Dr. Fumiko Chino: I Love it. I 100% agree with you. I feel so blessed to have worked on this issue and it really is sort of where we are now, how did we get here, and what the future should hold, how can we be doing better for financial toxicity.

Now, Kelly, your piece “Debt or Dying?” was a real highlight of the issue for me. Do you mind speaking on the lived experience of financial toxicity and how costs have really unfortunately driven some of your treatment decisions and your options?

Dr. Kelly Shanahan: Yeah, thank you Fumiko. Thank you, number one, for inviting me to contribute to this issue and for your kind words about my piece. I come from a place of privilege. I was a physician when I was diagnosed, but both with early stage and metastatic cancer. Yet I still suffered significant financial impacts. When I was early stage, I had the option, obviously, of either a lumpectomy with subsequent radiation therapy or a mastectomy. Well, I live at Lake Tahoe where we have zero oncology services at my end of the lake. And so for me to have a lumpectomy, I would have to drive 45 minutes to an hour each way, five days a week for radiation therapy, for, at that time, five to seven weeks. We didn't have accelerated courses of radiation back in 2008. I had a then nine-year-old and I was in solo private practice. So if I had chosen radiation therapy, that would have been time away from my practice, loss of income, having to make sure my husband or somebody else could pick up my daughter. So I chose to have a mastectomy and that was my primary reason for choosing that type of surgery.

Then five years later when I was diagnosed with metastatic breast cancer, again, no oncology services in my town, except for someone I was ironically subletting my office to one day a week who recommended combination IV chemo, hoping to get me closer to the starting line so I could perhaps live longer. My daughter at that time was in 10th grade, a sophomore in high school, and I would have done absolutely anything to try to make it to her high school graduation. So I did the chemo which included a taxane, which left me with permanent chemotherapy induced peripheral neuropathy.

Now, it's a little challenging to be an OB/GYN with numb fingers because I know I wouldn't want somebody trying to catch my baby or wielding a very sharp scalpel over my anesthetized body who had trouble feeling their fingers. So I had to stop practicing medicine, which was a huge, huge impact. I will remain eternally grateful to the men I started in practice with way back in 1991 when I finished residency for insisting that I get a disability policy because that is the only reason that my family did not have to declare bankruptcy was the fact that I had a long term disability policy. But it still made a lot of impacts on things we chose to do. I remember I was diagnosed prior to the advent of CDK4/6 inhibitors and I was diagnosed early stage, prior to the advent of the Affordable Care Act, which was a whole other thing. But I remember thinking, “Oh, my gosh. If I have to go on a CDK4/6 inhibitor that's going to cost $15,000 a month, I'm going to have to pay a 20% co-pay.” And that's a choice between putting that towards my daughter's college education. I would have chosen not to take that medication. Those are huge things, and that seems cheap.

Now, I am currently on a medication that was approved a year ago that is $28,000 a month. Fortunately, I have Medicare due to disability. I'm still not quite old enough for Medicare, that covers my expenses. I met that $3,400 medication deductible within the first month of being on that medication. But that has eased the financial burden. I also chose to participate in a clinical trial last year when my cancer progressed. And I live in a ski resort town 200 miles away from a major academic medical center. So it was 200 miles each way to participate in this clinical trial. And again, I had the wherewithal to be able to put a hotel or an Airbnb on my credit card, to pay for the gas and then wait for reimbursement. Not everybody can do that. We wonder why we can't accrue to clinical trials. We wonder why we don't have the diversity that we want. Well, these sorts of financial issues are part of the reason.

Dr. Fumiko Chino: Thank you so much for that overview of what you've had to deal with during the course of your disease treatment and that realization that, ‘oh, this is with privilege’ that I know what struck a chord with me as a cancer caregiver.

I was brought into the field of financial toxicity as being the primary caregiver of my husband. He was diagnosed with cancer, again before the Affordable Care Act, and we had these caps on his health insurance payouts. And so we ran up against his lifetime payout cap and essentially had to pay everything out of pocket after that. And even just for people with long disease courses or who were treated before the Affordable Care Act, they've seen a huge sea change in terms of financial toxicity. But sadly, the Affordable Care Act hasn't made actual cancer care necessarily more affordable as we continue to produce more effective treatments, but they come at these great expenses. And I think we are now at, I would say a liminal point where we're at accelerating drug discovery and also accelerating costs.

One of the reviews in this special issue focuses on the social and legal needs. Things like housing or food insecurity, transportation barriers, unemployment and psychosocial needs. They have a bidirectional impact on financial toxicity. And Dr. Hussaini and his team really put together a nice overview on this topic for the issue. Kelly, I know you've already spoken a little bit about this, about the transportation barriers, about the difficulties being unemployed. Again, coming from that position of privilege, can you talk about how hard it's been to even just navigate the healthcare system even with your incredible knowledge base as a physician expanding on what was hard for you, if it might have been harder for other people within the larger community of people with metastatic disease?

Dr. Kelly Shanahan: Yeah, I mean, I'm a physician and I know the healthcare system and I had a hard time figuring things out. And some of this, I realize now, when I was a practicing physician, I didn't know what things cost because what things cost depends on what your insurance is. And that's true of the cost of an office visit, of a procedure and of medications. That was challenging as a patient knowing who to call to find out to get a patient assistance program. And then when you have Medicare, again, whether it's because of age or because of disability, you hear all these things about, “Call company X if you need financial support for our great drug,” but that's not accessible if you have a federally funded insurance. So I think that was really challenging to figure that out.

Fortunately, a great clinical pharmacist at UCSF really helped me with that process. And I think that's something that we don't realize as patients is there are other resources. Our doctors don't know all the nuances of the financial aspects. If you are being treated at a larger academic medical center, there should be a financial navigator. But considering the fact that most people with cancer are treated in the community, and especially if you're treated in a private practice versus one that might be affiliated, let's say with a community hospital, they may not have an oncology social worker, they may not have a navigator. And I really wish there were more programs available like the one at Levine Cancer Institute that has a financial navigation program, a multidisciplinary program to help patients. There are a lot of resources available to patients.

I am on the board of directors of METAvivor. Our primary focus is raising money for metastatic focused research. We fund research, but we also offer resources that we can connect people with on our website, connect them to places where patients can get financial help. There is a fabulous organization, the Lazarex Foundation, which used to provide financial support to help people do a clinical trial, support for housing, support for transportation. And I know their funds are limited and that has sort of gone by the wayside, and that's really unfortunate because we want more people to participate in trials.

And I think we have to move away from this, “Oh, yeah. We, the pharmaceutical industry, the sponsor of the clinical trial. We’ll reimburse you.” Number one, they do not tell you that upfront. I knew that. I know that from the relationships I have with some people in the FDA. I know that that is allowed. So I specifically asked about that. But most patients don't know that. And I think any patients that might listen to this, if you're contemplating a clinical trial, upfront say, “I know that reimbursement for my travel related expenses and trial related expenses are allowable under FDA guidance. So how are we going to do that?”

But I also think that this needs to be not retrospective, not a reimbursement, but for a lot of people it needs to be an upfront payment. Even things like to cover the Uber for them to get from where they live on one side of a major city to the cancer center on the other side. So we need to do that. And recently, at the San Antonio Breast Cancer Symposium, in a session for advocates with the FDA, I asked that question: Does the FDA preclude payments before the fact? Do you consider that inducement? And the answer was “No”. There's no rule that says you can't do that. So again, we as patients need to be educated that there are resources available to us and don't take ‘no’ for an answer.

Dr. Fumiko Chino: I love all that information. And I know certainly when I was a caregiver, when my husband was sick, we had evaluated all the clinical trial options and found one that was potentially an option for him in California. But the travel expenses were too great for us to overcome the upfront cost because at that time he was out of work, I was out of work, we were both out of work, we had no income coming in. And so those travel expense barriers were one of the main reasons why it was a non-starter to even think about the clinical trial enrollment for him. It's just depressing to think that that could have made a difference. But I know that clinical trials work. That's how we discover new treatments.

Dr. Kelly Shanahan: Yeah, and the more people that participate and the more diverse a population– If the only people doing clinical trials are old white women, then how do we know it's going to work for young black women and men or other ethnic groups? We need diversity so that we know how the drugs work, what side effects they have in diverse populations.

Dr. Fumiko Chino: Now, Ryan, I want to pull you into this. What have you found can be helpful to help assist patients who may be struggling with their social or legal needs or even just having difficulties making ends meet?

Dr. Ryan Nipp: Yeah, Kelly, I had worked in the past too with Lazarex Foundation and found them to be phenomenal and the opportunity to get more patients onto clinical trials was a no-brainer and such a valuable resource.

So I think for this question, I do love this question, I think it depends as Kelly was kind of hinting at too. It depends on insurance, depends on the person, depends on the specific needs. But again in thinking about this, I think there's some growing evidence supporting things like financial navigation. Like you said Kelly, not every place has it. I'm actually very fortunate now at our cancer center in Oklahoma, we do have financial navigators and I always thought that was extremely forward thinking for them. We also have great social work assistance, knowing that that's a limited resource, but we have amazing social workers which I often sometimes get their expertise and help for this. There's some research out there showing that financial assistance with things like travel, lodging and co-pays could be beneficial for our patients. Again, trying to find those resources and is it sustainable? That is a tough question.

We also have an article in this special series focused on financial assistance programs by Dr. Raghavan which is phenomenal. It's an editorial on this topic I would encourage people to look into when this comes out. I've also just lastly admired recent work that shows that there's an intervention that, I think, I'm not quite remembering where it was tested, but it's a financial hardship screening intervention where they were asking people about financial hardship and then over time were able to find that by just asking and then bringing in whatever resources might be available, this could address the issue of financial toxicity in that study and it was an extremely impressive compelling outcome with that kind of a model. What I think is the future is that we need to continue to see those types of models put into routine practice and how can we actually implement those in our day to day practice. But that to me was very promising when that came out in recent years.

Dr. Fumiko Chino: Absolutely. I think you're referring to Dr. Blinder's piece in JCO from last year.

Dr. Ryan Nipp: Yes.

Dr. Fumiko Chino: Dr. Blinder was one of my amazing colleagues at MSK before I transitioned down to Texas.

Dr. Kelly Shanahan: Yeah, and Dr. Blinder is working on a new proposal. I am one of the advocates on that proposal again about the financial screening. And again, just even asking the question can make a difference.

Dr. Ryan Nipp: Yup.

Dr. Fumiko Chino: Absolutely. I know you both kind of pointed out that there are limited resources, but this idea that it's sort of depressing that someone who might be in need will not actually get the assistance from their physician or their physician team or their cancer center, but they'll have to reach out to other patients, and I'm so glad that that information is being shared. But it seems like we could be doing better. More orderly assistance, more navigation, more direct help to patients who actually need it in the way that they need it because it's not one size fits all.

Now, switching topics just a little bit, I had the pleasure of working with Dr. Littman, who is a resident at NYU, on a review in this issue about the role of cost conversations to decrease financial toxicity. And I know from my own prior research that only about 5% of oncologists say that they've had any training on discussing costs and that cost conversations seem to be rarely happening in clinical practice. Certainly from my own perspective as a cancer caregiver, I can say that cost conversations, despite incredible financial toxicity from my husband's treatment, were just not being had. Now, Kelly, have you ever had a discussion about cost with your treating team?

Dr. Kelly Shanahan: I have never had my treating team ever bring up costs. Now, as I mentioned before, when at one point I was contemplating going on a CDK4/6 inhibitor, I did say, “If I need to go on a CDK4/6 inhibitor now with this huge co-pay, I'm not going to do it.” But I didn't get that, “Oh, here's some resources that we can have.” I was sort of like, “We'll figure that out. You don't need it right now.” And fortunately, I did not need it until I was able to get on an assistance program and then had Medicare. So it wasn't prohibitively expensive. Although I did fall into that catastrophic donut hole one year. That was not fun.

But I think this is something that we patients talk about frequently. People, they're worrying about paying their bills, about paying their medical bills, do they pay their hospital bill or their doctor's bill or do they buy food? Do they pay their utility bill or do they pay the co-pay for their medication? And we should not, in the supposedly richest country in the world, be having to have these conversations. We share resources about people who have unused medications. If you have progression of your cancer and you have to switch medications, but you still have two months of a three-month supply, how can that be legally distributed to other patients? And there are organizations that can do that. We try to let people know about that. But yeah, patients frequently talk about this. It's so heartbreaking when someone has to do a GoFundMe to pay for their medical care or to pay for their funeral or the funeral of a loved one.

Dr. Fumiko Chino: Yeah. My standing joke, which is not really a joke, it's more of a ‘ha-ha sob’, is that GoFundMe is actually the US's largest cancer insurance provider, which is fundamentally very depressing. And I think one of the points that you pointed out about just even just eliminating waste- so if I have a drug that I'm no longer using, how do I donate that to the next needy person? When my husband died from cancer, we had a supply of Zofran that we had paid very dearly for. He was past his pharmaceutical benefit. We were paying $35 a pill. This is when Zofran ondansetron was still on patent. And I was like, these pills are very expensive. And I turned them over, actually, to my mom who's a physician to distribute in her clinic because I wanted people to not have uncontrolled nausea. I know now, working at world leading cancer centers that there's no actual way of doing that here, but a community cancer center can do it. I think we just- trying to get more efficient all across the board is so important.

Now, Ryan, how do you broach the topic of affordability with your patients? Do you try to preemptively discuss costs or really just wait for when there seems to be a problem with affordability?

Dr. Ryan Nipp: Yeah, I knew this was coming up. I think it's a bit of a touchy topic at times because you don't want to presume and like to bring it up. In some ways, there's this option of, at least in Oklahoma now, where people are traveling a long distance often to see us here in Oklahoma City. And so sometimes you can just start to broach the idea of like how much trouble was it to get here? Do you think you'll be able to make these trips every two weeks? That two hour drive, how's that going to be? But in general, I think I am talking more in recent years about the issue of financial toxicity. I agree with Kelly. It's rare when it does come up, but in recent years it's coming up slightly more often than maybe zero like it used to be. And I think, for one, it's because patients are bringing it up more. I think they're feeling more empowered to talk about it. It's more you're able to have that opening to bring this up to me. I would welcome the opportunity. Of course, I'm passionate about this topic. And then second, I think there's increasing awareness of the available resources. There actually are things that are being studied and there may be options. Whereas in the past, perhaps we were totally just at a loss, like if our patients would bring it up, we would feel awful for them, but there wasn't a lot we could offer. And again, in Oklahoma now, we have phenomenal social work that is available to us at all times, as well as that financial navigation as I was hinting at before.

But also, Kelly, you mentioned this before and thinking about this, the fact that we have clinical pharmacists in clinic with us that are just sitting right next to us in clinic has been a priceless resource for me. I found their insights and expertise to be very helpful in finding ways to address financial toxicity. Are there other ways that we can help this person? They brought up that this new anticoagulation pill that they're getting is super expensive. What can we do to help them? Things like that. They're with me. They're willing to look into are there other things that we could be doing again? Also at University of Oklahoma, when I got here, actually, they were already doing some work on this idea of financial toxicity screening, meaning: Can we preemptively be asking patients about their financial hardship or financial needs? And then when things are identified, again, we have cancer center navigators who are available to us for those positive screens to help put people on whatever paths we have available to address those things.

Again, in our special series that we have coming out in JCO Oncology Practice, we have a few articles that also talk about this idea of utilizing screening tools and questionnaires to identify patients who may be at risk for financial toxicity. And then some of the work that's growing with regards to once you identify somebody who screened positive, what to do with that positive financial toxicity screen.

Dr. Kelly Shanahan: And you know, you bring up that idea of bias and stigma, and I think that can be easily eliminated by asking every single patient. Doesn't matter whether somebody rides the bus in or they roll up in a Rolls Royce. If we ask every single person: Are you having any financial hardships related to your cancer treatments? Then we normalize it, we remove that stigma, and then we can help more people.

Dr. Fumiko Chino: And I've definitely seen that, I'm sure, from your own practice as an OB/GYN, like STI screening, we ask every single person about STI screening and it's not targeted towards youth. We ask everyone in a cancer center for falls. Have you had a fall? That's just part of our routine screening. So I feel like integrating one or two questions about financial toxicity could be a real avenue for helping identify financial toxicity earlier. Hopefully, intervening before it gets to the point at which it's end stage of financial toxicity, so to speak, when people are not showing up for their appointments anymore at all.

Now, we're heading towards the final part of our conversation today. I just wanted to give a little bit of space for open topic conversation. Is there anything that you feel like we really just should address for the future of financial toxicity? Whose voices are here, whose aren't? How do we make actual meaningful change to stop describing the problem but actually start to fix the problem?

Dr. Kelly Shanahan: Well, I certainly think the payers need to be pulled into the mix because they're the ones that are leading to denials. They are the ones that are requiring prior authorization for antiemetics for highly emetogenic chemotherapy. So I think they need to be pulled into the mix. I think our physicians, our care team, need to be pulled into the mix as well as the patients and caregivers.

Dr. Fumiko Chino: Ryan, anyone that you want to have more involved in this conversation, any way to expand it?

Dr. Ryan Nipp: You mentioned it there at the end, Kelly, is the caregiver. I think we haven't done a lot of work looking at that. Again, back to the research part and describing the issue, we haven't really done a lot looking at the caregiver side. The other piece that I think as we were putting together this special series was the international global perspectives that we did have a little bit of trouble trying to find. It's just different across different geographic and global areas so that's something else that should be studied more. We kind of hinted at it today, this idea of pharmacists being involved. We haven't seen a lot of work in that space. The other thing to think about is, at least in the places where I've practiced the APPs or the individuals seeing our patients a lot of the time and also empowering them to bring this up and have some tools and just bringing them into the research realm and to future intervention development.

The last thing I'll say, because we have brought it up a few times today, but I do think a wide open area is what do we do about clinical trials and the affordability of being on a clinical trial and making that more available or able for patients to be going onto clinical trials. I think that's an interesting space to continue to research.

Dr. Kelly Shanahan: Yeah. Step number one, every single patient with advanced cancer should be offered a clinical trial. Again, no assumption should be made. And number two, we need to make it so that everyone can afford to, time wise, money wise, to participate in clinical trials. It was a great privilege. I am so grateful that I was able to do a clinical trial and I look forward to doing others in the future.

Dr. Fumiko Chino: Absolutely. I really think that this idea of travel burden is such a huge barrier for many of our patients for getting even standard of care treatments, but much less enrolling on a clinical trial. And every piece of data that I've ever seen shows that you will actually get more enrollment and a more diverse patient population on your clinical trials if you just open the clinical trial closer to where the patients are actually living and getting their cancer treatment. So decentralized trials or trials within community practices, trials within the NCORP or the NCI's Community Cancer Center, or even again within regional centers affiliated with academic medical centers. These are always, I feel like, decreasing that travel burden.

Dr. Kelly Shanahan: And I just thought of one really simple way to decrease financial burden on patients. Just going for tests, imaging, doctor's visits - a patient should never have to pay for parking.

Dr. Fumiko Chino: Now, you're beating a drum that I can dance to. The parking ridiculousness. It led to, honestly, I think, at this point probably my most read research topic, which was just evaluating parking costs. And it is such a stupid thing to study. The fact that parking could be a barrier to receiving optimal medical care is so frustrating, infuriating if nothing else. And yet it is so common. I saw it in my practice in New York where they just couldn't afford to travel into Manhattan for anything that had to be done on the main center. It's a ridiculous barrier.

Dr. Kelly Shanahan: $5 an hour to park at UCSF to go see your doctor, get imaging, or get labs.

Dr. Fumiko Chino: Absolutely. And the funny thing is that the travel and the parking then must be balanced with the time toxicity, which is consolidating all appointments down could at least decrease your parking costs. But then you're literally at the cancer center the entire day and then you need to buy your lunch at the cancer center or you missed out on another day of work potentially. And so really thinking about this from a very patient centered framework is so essential to just move forward. And it's one of the reasons why I've been so honored and privileged to collaborate with patient advocates like Dr. Shanahan.

Well, I will wrap it up. I want to thank you so much for having such a robust conversation today about such an important topic. I can't really think of a better focus for our first podcast issue. I really want to thank both of our guests and also our listeners for your time today. You can find links to the papers that we discussed in the transcript of this episode. And if you value the insights you hear on the JCO OP: Put into Practice podcast, please take a moment to rate, review and subscribe wherever you get your podcasts. As a new podcast, we really do depend on you, the listeners, to spread the word that we're out there and we'll hope that you join us next month for our second episode. Until then, please stay safe and warm in 2025.

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. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Disclosures:

Kelly Shanahan:Consulting or Advisory Role: Pfizer, SeaGen, Sermonix Pharmaceuticals, Jaguar Health/Napo pharmaceuticals

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