A new model aims to change the standard of care around medical debt by addressing the financial toll of cancer using a multidisciplinary, tumor board model approach. Now, recent five-year data shows that it’s working.
This episode is available on Spotify and Apple Podcasts.
In this episode of The Cancer Letter Podcast, Jacquelyn Cobb, associate editor of The Cancer Letter, and Claire Marie Porter, reporter, talk about the first-ever financial toxicity tumor board.
Researchers at Atrium Health Levine Cancer Institute and Wake Forest University School of Medicine developed the concept of a financial toxicity tumor board as a way to address financial toxicity—the negative impact that the costs of medical care have on a patient’s overall well-being—in a systemic way.
“There is a study from ACS CAN that showed that nearly half of cancer patients and survivors reported being extraordinarily burdened by their cancer debt, carrying at least a negative balance of $5,000 from their cancer treatment for more than a year,” Claire said. “Almost half of people with cancer deplete their life savings within the first two years after the diagnosis.”
Recently, data published in JNCCN has shown their work has had an impact—$10M in savings to patients, distributing $393M in free drugs, and more.
“It does feel like a paradigm shift is occurring, which is exciting,” Claire said.
Stories mentioned this week include:
- First-ever financial toxicity tumor board aims to change the standard of care. Researchers focus on debt as a side effect of cancer, treatment amid cuts to Medicaid, NCI
- David Ransohoff: HHS seems poised to exert control over USPSTF, Ransohoff: The task force is the pinnacle of evidence-based medicine
- Robert Peter Gale: Understanding the impact of the Israeli-U.S. attacks on Iran’s nuclear facilities
- Arthur Machlenkin: An overlooked immune cell population may offer new direction for cell and gene therapy
- Charles Brenner, City of Hope: Unraveling connections between diabetes and cancer: Insights from metabolism research at City of Hope
This episode was transcribed using transcription services. It has been reviewed by our editorial staff, but the transcript may be imperfect.
The following is a transcript of this week’s In the Headlines, a weekly series on the Cancer Letter Podcast:
Jacquelyn Cobb: This week on The Cancer Letter Podcast.
Claire Marie Porter: There was a study from ACS CAN that showed that nearly half of cancer patients and survivors reported being extraordinarily burdened by their cancer debt, carrying at least a negative balance of $5,000 from their cancer treatment for more than a year. Almost half of people with cancer deplete their life savings within the first two years after the diagnosis. These researchers, Thomas Knight and Derek Raghavan at Levine Cancer Institute decided to tackle this from a different perspective, from a systemic change perspective to, again, address the crisis and ask the question, how did we not see this coming before the crisis occurs and be able to intervene?
Paul Goldberg: You’re listening to The Cancer Letter Podcast. The Cancer Letter is a weekly independent magazine covering oncology since 1973. I’m your host, Paul Goldberg, editor and publisher of The Cancer Letter.
Jacquelyn Cobb: And I’m your host, Jacquelyn Cobb, associate editor of The Cancer Letter. We’ll be bringing you the latest stories, groundbreaking research, and critical conversations shaping oncology.
Paul Goldberg: So let’s get going.
Jacquelyn Cobb: Hey, Claire. How’s it going?
Claire Marie Porter: Hi, Jacquelyn. I’m good. How are you? Where are you?
Jacquelyn Cobb: I am still in Peru. We are now in a city called Calca. I think last time I was on the podcast I was in Cusco, and since then I was in Urubamba. But we’re in the Sacred Valley now, and yeah, it feels sacred. It really is something special. I am in a bedroom now, so I’m not in the best place to turn you around, but I will show you my view now, is these mountains, which is so ridiculous.
Claire Marie Porter: Wow—
Jacquelyn Cobb: But there’s still mountains and crazy hikes and stuff like that, so it’s been really, really, really awesome.
Claire Marie Porter: Amazing. I’m so jealous. I have such a travel, is it itch? A travel bug? Travel virus?
Jacquelyn Cobb: Yeah, both.
Claire Marie Porter: I don’t know, a travel something. I’ve just been desperate for travel, so I’m living vicariously through your trip.
Jacquelyn Cobb: I can send you some photos. On our hike yesterday we found… We interacted with at least three, but I think that there were many more, but they seemed like German Shepherd puppies, and they were the cutest things on the face of the planet. They were so little and so rambunctious. I was very tempted to take one home. It was like, the hike went past a farm, and so they were on the farm and they just came out on the trail and we were like, “Oh, hello.” So it was very cute. I really, really liked it. So I’m very tempted to… I have an animal itch or an animal virus.
Claire Marie Porter: Eww.
Jacquelyn Cobb: Animal, I know, that’s not it.
Claire Marie Porter: That’s not what you want, yeah.
Jacquelyn Cobb: It doesn’t mean the same thing. Anyway, before I put my foot in my mouth anymore, I will take us through last week’s headlines.
Last week Paul wrote about the canceled U.S. Preventative Services Task Force meeting. He spoke with David Ransohoff, a gastroenterologist and clinical epidemiologist at University of North Carolina School of Medicine about the importance of USPSTF. That’s always a tricky one, USPSTF, in separating clinical evidence from politics and what is at stake should the Department of HHS take control of the panel.
Story three was a guest editorial by Robert Peter Gale on the consequences of the Israeli U.S. attacks on Iran’s nuclear facilities and what that means for cancer.
Story four was another guest editorial by Arthur Machlenkin, Chief Scientific Officer at Pluri on MAIT cells, it’s a different immune cell therapy, and their potentials to improve cell and gene therapies.
We had a big cancer policy section last week that I headed up, because Claire was busy with the lead and there were some really fun stories in there, at least writing them was fun. So definitely check it out. And it featured the first story by the latest edition to our team, which is Sarah Willa Ernst. We are so thrilled to have her here, and I’m sure she’ll definitely be on the podcast in no time. And yeah, she’s a good fit, we like her, so I’m excited to have her here.
And then finally, the story we’re going to talk about today is Claire’s lead story, which talks about the first ever Financial Toxicity Tumor Board. So I’ll just let Claire go. I think she has a little spiel. It’s a really, really interesting story and we can follow up with questions afterwards.
Claire Marie Porter: Yeah, I mean, I guess it’s more of how this story makes sense to me, which I think it makes sense, because I was new to both the concept of financial toxicity and the idea of a tumor board model. I think just understanding financial toxicity is important for understanding the origin story of the FTTB. So medical debt is a toxic side effect of cancer. And studies show that it’s an independent risk factor for cancer survival as well. Financial toxicity is a concept that has been around for ten-ish years. And most of the research around financial toxicity has been in describing it, it’s been descriptive, drawing parallels to the physical side effects of cancer treatment. But more and more researchers they’re working to identify interventions that could stop a crisis before the patient falls into this hole of medical debt.
There is a study from ACS CAN that showed that nearly half of cancer patients and survivors reported being extraordinarily burdened by their cancer debt, carrying at least a negative balance of $5,000 from their cancer treatment for more than a year. Almost half of people with cancer deplete their life savings within the first two years after the diagnosis. These researchers, Thomas Knight and Derek Raghavan at Levine Cancer Institute decided to tackle this from a different perspective, from a systemic change perspective, to again, address the crisis and ask the question, how do we not see this coming before the crisis occurs and be able to intervene?
So that’s the brief overview. It’s the first of its kind, Financial Toxicity Tumor Board. And the data from the first five years of its operation has just come out and shown that it’s working. So that’s the basic overview. I did want to mention that coverage gaps in cancer care, they affect obviously everybody who has experienced cancer, or if you’ve known someone with cancer or you’ve had cancer coverage gaps are this ubiquitous experience. But obviously, they disproportionately affect people who are uninsured, underinsured, but even people who have great insurance or think they have great insurance end up having these experiences. So Fumiko Chino, she calls this the onus of improving survivorship, because cancer treatment is getting increasingly expensive due to breakthroughs, which we want. But at a time when young people are also facing this uptick in cancer diagnoses, and at a time when funding cuts to research and cuts to Medicaid are literally looming. So just for context.
Jacquelyn Cobb: Yeah, no, I mean it’s a great story, but obviously a very tragic topic. I’m interested if you could, and not to put you on the spot, explain a little bit about what exactly a Tumor Board is, what that model is, just because I’m not sure all of our listeners would understand that. And it’s an interesting way to address financial toxicity. I like. I feel like it’s really ingenious.
Claire Marie Porter: Yeah. So a Tumor Board is a multidisciplinary approach. It’s been around for a long time, like 50 plus years I believe. It’s basically a meeting of diverse specialists across the board when it comes to cancer care, who will come together and discuss individual cancer cases in order to determine the most appropriate treatment plan for each patient. The boards typically involve a rotating disciplinary focus, from medical oncology, to radiation oncology, pathology, surgery. So it’s this way of bringing together everyone to talk about a specific case. When it comes to financial toxicity, because it’s treated or should be treated as a side effect, like any other side effect, it’s the same concept, so it’s following the same archetypes.
The Financial Toxicity Tumor Board has these two arms. One, is the patient assistant program that handles the more routine cases that they get, copay assistance, referrals and things like that. And then the more complicated or difficult to treat situations goes to the Tumor Board and they have a diverse focus each month that draws different people and brings together different people across the spectrum of cancer care. I mean, every cancer center has financial navigation services and they’re collecting data. But something that Fumiko Chino pointed out, is that not every cancer center has scalable data. She said something along the lines of, we’re really good at what we do, but we’re bad at showing our work. And this is one of the first times that this has a great amount of data, and that data is intended to be scalable so that other cancer centers can apply the same technique, in order to tackle the financial toll of cancer on their patients.
Jacquelyn Cobb: When I was reading your story last week, I mean you’ve already touched on the fact that financial toxicity is a very real toxicity. It’s not just this descriptive word that’s an analogy of real toxicity. And I was like, it’s quite literally a toxicity. And I don’t have it with me unfortunately, but maybe we can pull it up quickly. But the quote from a patient who was saying that, “I just can’t get my treatment. I can’t come in.” I feel like those stories are so powerful along with the stats where you’re talking about all of these people having really intense financial burden. But it’s like it really can affect survival outcomes and quality of life.
Claire Marie Porter: Yeah, I’m glad you brought that up. The quote that you’re referring to, it was a specific patient, but a specific patient that was representative of a lot of patients. This is a patient that Dr. Thomas Knight gave to me without specifics. Basically, a 30 something year old patient with a family with… I’m not sure what the insurance status was, but quickly realized that they were not going to be able to work anymore because the cancer treatment was taking such a physical toll, loses their job, loses their insurance, tells their doctor they can no longer pay for treatment. Not only can they not pay for treatment, they can’t pay for transportation to get to the treatment center. And of course, that is a problem that becomes increasingly more difficult in rural areas where your travel to a cancer center is essential or even relocating to a lodging nearby.
So yeah, I mean there’s all these different, there’s macro, there’s micro toxicities, there’s this concept of trade-offs, which a lot of patients talk about, especially if you lose your job after diagnosis, you have your family cutting your meds in half, skipping appointments, immediate needs are not able to be met because of this financial toxicity. Yeah, I mean, it really could mean the difference between life and death for a lot of patients.
Jacquelyn Cobb: Well, I’m so excited to hear that the tumor model, or at least the field of financial toxicity is moving toward solutions. Obviously, you need to have that descriptive phase, but it’s great to hear that there’s actually some things that are working too, which is so exciting. I’m hoping to see it expand to other centers. Is that something that you heard about?
Claire Marie Porter: Yes. So I mean, I should talk maybe for just a second about the data.
So the data, again, of an analysis, looking at the past five years of this Financial Toxicity Tumor Board. It was published in the Journal of the National Comprehensive Cancer Center Network earlier this year. And it showed that over the past five years, the patient assistant program helped almost 9,400 patients with copay assistance, which totaled in over $10 million in savings to the patients. 16,495 patients received free drugs valued at nearly $393 million according to the paper. And in five years, over 70 cases were presented to the Tumor Board with over 90% resulting in immediate solutions for individual patients. Yeah, so I think the whole point of that data analysis is to show that it’s working.
And Dr. Knight has said that he receives queries all the time from cancer center directors being like, “How can we make this happen for us at our institution?”
So it does feel like a paradigm shift is occurring, which is exciting.
Jacquelyn Cobb: Yeah, that’s awesome. Are there any barriers? What would be preventing a cancer center from trying to do this? I’m sure, I mean, it’s resources of course, but…
Claire Marie Porter: Yeah, I think it just takes a lot of collaboration and a willingness to meet frequently. It’s a commitment, you have to commit to it. So I think if the team is up for it, then it’s very, very possible. But yeah, I think the collaboration piece is probably the biggest obstacle. Yeah. Paul and I had talked about trying to find maybe a patient that could carry this story narratively, but it really felt like for this story the Financial Toxicity Tumor Board was the character because it’s such a new concept and it is the first of its kind, which is always exciting.
And the goal here is to change the standard of care. And so yeah, I hope that happens, and I think what they’re doing is really impressive. I think just one other note, and Fumiko and I talked about this as well, is that with cuts to NIH, this is the type of research that NIH funds, things like this, that no drug company is going to fund an area of research that involves de-escalation. It’s an area that it’s not popular, it’s not as shiny or exciting as a breakthrough, but it’s super essential. So I think the timing is ironic. And yeah, I just think the context is important for understanding why this is so important.
Jacquelyn Cobb: Thank you so much, Claire.
Claire Marie Porter: Yeah.
Jacquelyn Cobb: So nice having you on as always. And yeah, maybe we can get a girl power one with Sarah with us coming up soon. That would be fun.
Claire Marie Porter: That would be great. I would love that. All right, bye.
Jacquelyn Cobb: Thank you for joining us on The Cancer Letter Podcast, where we explore the stories shaping the future of oncology. For more in-depth reporting and analysis, visit us at cancerletter.com, with over 200 site license subscriptions, you may already have access through your workplace. If you found this episode valuable, don’t forget to subscribe, rate and share. Together, we’ll keep the conversation going.
Paul Goldberg: Until next time, stay informed, stay engaged, and thank you for listening.
