In an interview with Peers & Perspectives in Oncology, Thomas “Greg” Knight, MD, discusses how Levine Cancer set up its Financial Toxicity Tumor Board to get the lead decision makers on the same page for patients and the importance of having this resource at all cancer centers.
Peers & Perspectives in Oncology: How was the Levine Cancer Institute Financial Toxicity Tumor Board started?
Knight: It goes back to the entire concept of financial toxicity. We think of financial toxicity as the damage done to a patient by the financial implications of their care. That includes things we generally think about like co-pays, medication costs, and traditional costs of medicine, but it also includes all the other things that go along with that, including childcare, loss of wages, getting to and from your appointment, and being able to put food on the table.
We realized quickly here at this institution, where we do a good bit of financial toxicity research, that the traditional ways we’ve approached this issue have always been at an individual level. If a patient expresses concern or has an issue, we try to fix it one-on-one with a social worker or nurse navigator. But we also realized that this problem encompasses many different people, especially people who are not traditionally talking to each other, such as the billing department, and the administrative personnel who perform insurance verification, they don’t talk to our clinical [groups]. We realized that as an institution, we needed to create something to bring all these people together to design solutions.
In September 2019, we created the first-ever financial toxicity tumor board.1 We modeled this after traditional disease-focused tumor boards, similar to those in lung and breast cancer, where you bring in the radiologist, the doctors, and the nurses; you bring all these people together in a room to make decisions about patient care. We did the same thing for our financial-focused tumor board, so we brought in nurse navigation, social workers, doctors, nurses, and a lot of our administrative and disparities personnel. The only thing we stipulated at the time was that we had to have decision makers in the room. We didn’t want to have this discussion and then have to talk to 5 different people. So, a decision maker from each important department needed to be in the meeting. If that person couldn’t be there, then they needed to have one of their deputies with the ability to make decisions there. That way, when we’re having these discussions, we can make decisions in real time for the patients.
How have you seen this work since it started? What results has the tumor board produced?
[What we’ve realized about this model] is that it works on multiple levels. For each patient that’s presented—in the last few years, we’ve probably had somewhere over 40 patients who have been presented in that tumor board—we are able to find solutions for the individual patient about 95% of the time. In general, we can try to fix the issue…. But the advantage of the tumor board model is that each case makes us realize that there are likely systemic issues [we can fix] that can allow us to avoid this problem in the future.
An example of this is we had a patient presented at a tumor board not too long ago, a young person with metastatic cancer who came in 3 to 4 months into their treatment; they lost their employer-based insurance, so now they don’t have any ability to pay for their treatment. They’ve lost their job; now they don’t know how they’ll be able to pay for their food on the table, [much less] transportation to the appointment. In that tumor board, we could have all the different people jump into action. Our insurance people were able to get COBRA [insurance for the patient] and then also pay for COBRA, so we’re not having to worry about how the patient is going to pay for the COBRA. We had our transportation people help out, and our disparity experts worked with a local food bank to get food delivered to the patient.
In that case, we did a great job helping the patient…. But at the same time, we also were able to look at this young person with employer-based insurance with now-metastatic cancer who needed this intensity of treatment [and realize] we need to have a mechanism to be able to identify these people up front, so we don’t get into the crisis we’re in now. We need to be thinking about that from the beginning of treatment. So from that case, we then created a task force to create proactive screening and start trying to get in there a lot quicker so that the patients who have this similar situation up front won’t get into a similar crisis.
What other options for patients do you provide at your institution?
In association with this traditional tumor board, we also created the Patient Assistance Program. The idea behind this is we’ve embedded clinical pharmacists in every clinic, no matter where they are, from our tertiary medical clinics in Charlotte, North Carolina, as well as our community sites. What we want to do is obtain for every eligible patient their drug either free or as close to free as we can. The other routine part of oncologic care is insurance co-pays, so we also want to take those away if that’s going to be an issue. Then, you have the tumor board on top of it to deal with more complex and less routine issues. With just with our Patient Assistance Program, in the past 5 years since we created it, it has helped around 9000 patients pay their co-pays, with a total co-pay assistance of about $10 million. [Approximately]16.5 million patients have received free drugs, with a value to the patient in total drug cost of about $400 million.
We designed these 2 arms to work together to take total care of patient needs. We have the Patient Assistance Program arm, which takes away all your routine costs, and then we have the tumor board arm to take care of the more difficult cases.
What were the overall takeaways from the Financial Toxicity Tumor Board?
The biggest thing we’ve learned is you must have buy-in. I’ve talked to lots of folks around the country who want to do something like this, and one of the first things I say is the way we did this was intentional; we have the decision makers fundamentally involved. I think that at a certain point, for this structure to work, you have to get buy-in from the institution, and show that not only does this help patients, but it also helps the institution. We are able to solve problems from a financial standpoint, and then we can use that money gained to help more people who also need help. It’s a win-win and not financially neutral; it is financially beneficial for the institution to think about these issues and intervene.
How would other practices go about creating a tumor board like this?
The first thing [I tell people] is to gather your stakeholders. It requires buy-in from people who [usually] don’t talk. That’s one of the model’s biggest advantages, but you have to start talking to these people to ensure your administrative, financial, patient assistance people are all on board while also getting clinician buy-in to ensure they are on board. After the first couple of meetings, people really get excited about the process.
The [most significant] feedback I get from the people who attend the meeting, especially if it’s their first time, is that it is incredibly productive time and makes you feel like you’re making a difference. So many times, financial issues feel unsolvable. Physicians, clinicians, nurse practitioners, and nurses are trained to give medical care to the best of their ability, and a lot of times, you feel like with the current setup of payers and all the different red tape that has been put in front of you that you’re not able to do it. Part of that is because everything is in black boxes. How much is it going to cost, or how do I pay for it? That’s not part of what my daily routine is, and suddenly, you have these people who say we have this or do it this way, and we can fix this. It gives you a sense of relief, it takes a big burden off you, and you learn things. Clinicians are used to [a process where if you come across] a disease that you don’t 100% know the answer for, you go to the tumor board and ask if anyone knows any other research. This is the same concept; we’re just doing it in the financial sphere.
What are the next steps in this space?
I would love for every cancer center to have something like this. I think this should be the standard of care for patients at an institutional level in dealing with these issues. I understand that there are huge roadblocks, so I think that one of the things is trying to lean on people who have done it before and have pioneered the way. You don’t have to reinvent the wheel. There are a lot of variable resources and needs in different communities, and I agree with that. Having said that, there are processes that can be universal. That’s the same thing we always say about quality improvement research. Everyone does it, but everyone does it slightly differently. It’s very institution-specific, and we don’t publish how we do it.
That’s the other part…if you do this kind of work, you need to publish it and get it out there because everyone is dealing with the same issues. We might have different resources, but we’re all dealing with the same issues, and we need to try to figure out what is the best process for us…the same way we do when we treat cancer. It’s not like we’re all out there doing it all on our own. We publish what we do in cancer, and everyone tries to find best practices. We need to be doing the same thing when we’re talking about financial issues. At a fundamental level these are the key things that often cause cancer treatments not to work as expected. For example, people stretching medications and people not showing up for appointments. When cancer treatments fail, frequently the reason that happens is because of financial barriers. We need to go as aggressively to fix these as we do with some of the other traditional barriers we think about.
When you look at the latest drug trials, in almost every cancer, we see 10% to 20% survival gains. On average, if you do that with a new drug, that’s an incredible result. But I think this is the next area we have to focus on because you can have the best drug in the world, you can have this amazing breakthrough, but if the patient can’t pay for it, or they can’t even get to the center to get the drug, then it’s of no value. Finally, if we’re going to be 100% serious about cancer equity and giving the same care no matter what your circumstance, we need to be focusing on solutions for these issues such as processes like these to improve outcomes for every patient in this country.
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