Qasim Hussaini: Absolutely. Thanks so much for having me here, Dan. All right. So my name is Qasim Hussaini. I am one of the GI medical oncologists at the University of Alabama in Birmingham, and I'm also a health-systems researcher here studying cancer policy essentially. So I'm going to start this presentation by essentially noting that cancer care in the last couple of decades has become a lot... It's primarily outpatient, it's very multidisciplinary. It requires a complex coordination, where there's a lot of shift in patient employment responsibilities, finances, and even caregiving responsibilities. And behind the scenes, there's been a big interaction, increasingly more so, between the payers, the patients, and the providers as well. So once we even get the patient started on this treatment, treatment itself is increasingly shaped by insurance law, employment law, housing law, disability policy, and most of these are entrenched in local, state, or federal policy. Every institution now in the country has invested a lot in a social work and navigation workforce, and they do a tremendous job, they're a vital part of the team. But even they're overextending in the number of needs that they can help the patients with, and with the landscape turning increasingly more legal in terms of what patients qualify for, a lot of the social workers and the navigation workforce, they lack the training to address this shifting regulatory and legal landscape.
And where legally it does exist for patients, it's fairly patchy, it's reactive, and a lot of patients have to advocate for themselves at a time of acute vulnerability as they're going through these timelines. As most oncologists in the country know, these treatment timelines for patients with cancer are unforgiving. If you have a missed denial for insurance, if you don't start your treatment at the right time, that can really have a big downstream impact on survival, at the end of the day, and quality of life. And currently, there's no legal-risk screening tool that institutions employ to see which of the patients would be at higher risk of having legal difficulties. So it's this backdrop that we went into the field with, essentially. And the first paper, the first study that we tried to do really was to ask ourselves, "How prevalent are these legal difficulties in patients that are undergoing cancer treatment?" In the first study that we did out of our group, we tried to establish the prevalence of unmet legal needs, and we partnered with this nationwide organization that we've been working with for a while now, Triage Cancer. It's kind of like a hotline for legal and practical issues with cancer that patients can call into and essentially get some help. And what we found, after looking at 6,000 patients, caregivers and healthcare professionals, was at least half of the patients, more than half, were calling for assistance with one legal barrier, one third of the patients were calling for assistance with at least two legal barriers, and 12% of the patients were calling for assistance with three legal barriers.
Now, you may ask me, "What are these legal barriers?" So the most predominant legal barriers were insurance. These were patients calling in for appeals, options, Medicaid/Medicare eligibility, having a denied health insurance claim appealed. On the financial side, lots of patients were calling for financial and housing-related legal difficulties, including eviction-related law. Employment was a big one, patients calling in because they can't take time off of work for their treatment, getting fired from their treatment, being laid off from their job because they have to undergo cancer treatment. If they do go back to their job, being demoted at their job compared to the position that they used to hold before, even basic things, like FMLA leave, et cetera. Disability was a big one, being eligible for disability benefits, SSDI, SSI. Education and immigration law were the last two buckets. Our study years included everything up till 2024. We're not even sure how things have changed in 2025 onwards on some of these issues. At least anecdotally at our center, things have changed a good bit. And it's not just the patients that struggle with these, it's also the caregivers. Patients are one thing, but even their family members, their loved ones, who are helping them navigate this treatment, they're just as lost essentially in helping navigate patients, especially the caregivers of younger patients in their 40s and 50s. This is some work that we've published in JAMA Network Open last year, and then some of it will be in review very soon at The Oncologist. So what I've described so far are patients essentially who are having difficulty navigating this system, but it's also the workforce, people like you and I.
As oncologists, healthcare workers, there's fairly low legal literacy among medical providers themselves. We did this study, where we looked at healthcare workers, and we found at baseline, only 10% to 20% of healthcare workers even felt comfortable assisting patients with insurance, finances and disability insurance. We did a qualitative study as well, and what we found was most of our patients were essentially living right on the line. This is a quote from a nurse, "Without room for extra expenses, sometimes they have to choose between eating, paying for electricity or medication." We have hundreds, thousands, such quotes looking at different sorts of legal vulnerabilities in patients. So in most of our work, qualitative baseline work, what we found is healthcare workers, nurses, navigators, community health workers, including providers, everyone struggles with helping patients with many of these issues. We've also developed a structured legal intervention with our partners at Triage Cancer. Triage Cancer has had a lot of these healthcare workers go through this legal intervention. And what we found at the six-month mark post-intervention is 91% of all healthcare workers reported changing their behavior or practice based on their training. So essentially, we can move the needle on some of this in certain ways, we can help people be better prepared, we can help providers be better prepared when they speak with patients. So having developed all of this, our solution has been essentially... This is really cool, this is something that excites me very much. We developed the first RCT testing legal navigation. We currently have this ongoing at UAB. It's not just the first RCT like it in the country, I imagine it's the first RCT like it in the world, looking at what happens if you can get people legal help as they go through cancer treatment. So this is an attorney-led proactive monthly outreach. The name of our trial is LEGAL-CARE trial, by the way.
Essentially, once patients get diagnosed with cancer, within the first six months, we connect them with an attorney from Triage Cancer and they have monthly proactive outreach. This is not reactive in any way, we're not waiting for the patient to reach out to us. We're reaching out to them every month for the first six months of their treatment. It's at no cost to the patient. It's currently a very scalable model with a lot of policy relevance. This is a feasibility study, obviously, they're looking at the feasibility of even having something like this work in the real world. But the main goals, our secondary outcomes include reducing legal burden, ensuring treatment continuity, improving quality of life, reducing financial toxicity, reducing healthcare utilization, things along those lines, and the goal is for this pilot data to essentially become a multi-site R01. So where this fits in big-picture-wise, I currently lead our cancer policy lab here at UAB, and our goal is to build a comprehensive evidence base to address these cancer-related barriers, from not just defining the problem, but looking at stakeholder perspectives, but also piloting interventions and shaping policy. I have four phases to how we're going to develop this.
The first phase is looking at a lot of retrospective cohort studies' data essentially measuring the problem, which is kind of what I presented, looking at the prevalence of legal difficulties. Phase two is implementation science, looking at the qualitative and prospective pieces. How do healthcare workers feel? Prospectively, are we able to develop interventions that help healthcare providers essentially improve their legal literacy and help patients? Phase three is the clinical trial. This is the randomized trial. This is the first lawyer-led clinical trial that we have ongoing, which is thankfully supported through a pre-R01 award we have through our cancer center. And then, finally, phase four is the policy impact, looking at writing white papers, policy briefs. We work with a lot of groups here in Birmingham, state and the federal level, essentially looking at how we can move some of these things from just something that happens at institutions to more policy change. So we're looking at structural frameworks, MLP models, white papers, and a lot of those things. So essentially, this is the last slide that I have, how do you make legal care standard in oncology, and I think it's going to be difficult. I think any model that we end up developing, it should have a few things.
It should be proactive, it should be embedded, it should be routine, it should be reimbursable, and it should be sustainable. One of the things that we talked about in our paper, the one that we had recently out in JCO OP, is a structural framework where we look at point of care. At the most basic level, when patients are being triaged into clinics around the country, how can we help? Having brief intake questions, EMR triggers, legal-risk screening tools, these are just some ideas. At a health-systems level, do we train one healthcare worker at each institution who can help navigate patients? What about local legal aid partnerships? What about virtual off-site legal help, like an organization like Triage Cancer? What about patient-facing education materials? These are all different items that we can have at the health-systems level, and there's varying levels of evidence behind each one of these. And then, finally, at the policy and impact level, we really have to ask ourselves the question, "How do you make this sustainable?" There's some movement on the CMS front and what reimbursement codes could be used. There's also Medicaid 1115 waivers available for institutions, there's value-based payment models we can talk about, lots of different ways that we can approach a solution to the problem that we have. This is really the last slide that I have. What I'll say is legal difficulty should be treated just like any other symptoms that we see our patients have in clinic. We already invest a lot in navigating patient survivorship clinics, helping them with their symptoms as they go through treatment. I think it's really important that we also start measuring, modifying legal difficulties and make them actionable around the country to provide better care to our patients.
Daniel Joyce: Incredible, incredible work, Qasim. Really interesting angle on what ultimately is the burden of receiving care and paying for care when you have a cancer diagnosis. A lot of my work in financial toxicity looks at direct costs, indirect costs. A lot of those indirect costs, we think about our decreased productivity at work, time off of work, and what that does to your paycheck. But what you've really highlighted is there's a piece of that that's not just those indirect costs, it's how to manage those indirect costs with a lot of navigation that we don't typically think about. Even in the financial navigation framework, I'm not sure we think about the legal aspects of that. So I want to, if you can, just simplify it down to give me an example of, okay, a patient gets a cancer diagnosis, they run into a legal problem, and maybe give an example of what that might look like, and then how does legal navigation work with that problem with that patient? Can you just walk us through a scenario and what that would look like?
Qasim Hussaini: No, absolutely. Several such scenarios have played out in our clinic. Insurance and coverage problems essentially end up being the most common. We see patients whose chemotherapy is delayed, not primarily because of biology, but because paperwork wasn't approved, that's a very common one, and we see a lot of these delays. Some of these, we don't really discuss them as clinicians, because a lot of these are handled on the backend by navigators and social work teams, that happens a good bit. Employment one is the other one. A lot of our patients, when they get diagnosed with cancer, they may not be able to take time off of work. They get fired from their work, essentially. A lot of the times, this could be a wrongful termination. So a traditional social work model may essentially help the patient get in touch with the HR people, essentially, and that's where the buck stops, they're not able to interpret employee protections and laws. So if we can provide patients legal guidance, they'll know that they have certain employee protections that prevent them from getting fired, that potentially allows them to also tap into leave that they could get from their work to get their cancer treatment and then get back to work. So we've seen several cases like those essentially. So that's a place where legal guidance comes, again, it's very helpful. Disability, insurance appeals, those are the things that this could be very helpful. Housing law is an interesting one, and this tends to be very local and state-dependent as well.
I've unfortunately treated patients where I've been discussing six-month-long adjuvant treatment for pancreatic cancer, and at the end of the conversation, I learn that they're housing insecure, living out of a motel with mold growing through the walls, not exactly the best setup for us to be helping patients get set up on adjuvant chemotherapy. This is a dicey one, because legal guidance can only go so far. But traditional social work model may set them up with an assistance program locally, maybe Hope Lodge or something else that different centers have set up. A legal guidance model may help them interpret eviction laws to see if they were wrongly evicted, especially around the time of their treatment, especially if they're wrongly fired, because now they can't pay their rent and paycheck, so all of those things come together. So these are just some examples. It touches all aspects of a patient's treatment plan, I feel. Some of them we hear about, and some of them we may not quite as much hear about.
Daniel Joyce: Yeah, that's really interesting. In looking at how to mitigate financial toxicity, a lot of faith has been put in financial navigation, a lot of work has gone into evaluating that. And when I look at the evidence as a whole, it's rather underwhelming, the impact that those navigation systems have, and I really do think this might be a piece of it. This is an aspect of care that those navigators are not necessarily well-versed with or maybe even able to assist with as well as just identifying resources to help pay for care. So including a legal aspect of that may really improve those navigation processes. It's really, really interesting.
Qasim Hussaini: Absolutely. The goal would be to do it in a way that doesn't overwhelm them any more than they are, because these navigators, it's a high-burnout field. We have excellent navigators, social workers, and there's only so much they can do, they can only overextend themselves so much. Providing them with the tools and offloading some of this to other places that could handle this better, I think, would be a great idea.
Daniel Joyce: Yeah. So you bring up my next point, in that this obviously takes resources, and I love your RCT design idea, it's beautiful, having attorney-led intervention seems like the best way to do it. However, lawyers are expensive. And so, I guess my question is, as healthcare costs are rising, which is creating financial toxicity, we know a lot of those healthcare costs are primarily administration fees that are driving up costs. Of course, there's cost of drugs is a whole another topic. But how do we implement this in a way that doesn't just exacerbate the problem in a vicious cycle, that makes those costs worse for our patients, at the end of the day?
Qasim Hussaini: No, absolutely. I think we have to do this in a tactful way, if you do it at all. So currently, we're in the evidence-building base phase of this, and hopefully we have evidence that shows that getting people legal help helps reduce treatment delays, administrative burden, other downstream factors that end up costing the health system a good bit. So once you show that return on investment, I think it makes an easier case to institutions that, hey, this is a business incentive. If you can navigate your patients better around these legal difficulties that they're having, that you have not quite been doing so before, maybe there's an incentive for the institutions to invest themselves. So that's one, because they're saving downstream costs, which they would've essentially not billed someone else for. The other aspect is other existing tools that allow us to make this sustainable. I think the new CMS principal illness navigation codes and the CHI codes allow... So these were introduced about 18 months ago, and nobody still has data on how often these have been billed, but these allow the services that we had already been providing in the medical system, like classic social navigation services, to now be billed. I believe it's 75 bucks for 60 minutes of your time in Alabama, and then different states have different rates for each of these codes.
These are G0023 codes, so I believe some of those codes could actually be used for legal navigation-related codes. So could it be expensive having a lawyer embedded? Absolutely, that can be expensive. Would it be less expensive to have a social worker that's trained in legal navigation who can then start billing some of these codes? I think that would be a little bit easier, would be cheaper. So those things still need to be ironed out. There are mechanisms that allow us to bill for some of these things, either the business side or existing CMS codes. Outside of those, I think many states have the options of Medicaid 1115 waivers that they can use to pilot interesting legal navigation programs to see if it works for them. And then, value-based payment models, I know that's been a bit of a buzzword over the last 15, 20 years. We haven't quite shown as much benefit as we could from those. I think much of that data is still forthcoming. But I think that's another place where we can embed quality metrics around helping patients navigate legal risk.
Daniel Joyce: Yeah, really interesting. It'll be fascinating to see the overall impact, and I can think of multiple different ways that it really could improve lower costs, actually. Patients are more adherent to care because they can pay for care. They actually are able to pay for the care, so the money's getting into the hands of the healthcare system. So there probably is a downstream impact of this that actually makes costs lower and supports the healthcare system better than when we have patients who just can't pay for care and don't even have the resources to identify how to pay for care.
Qasim Hussaini: Absolutely.
Daniel Joyce: I can't help but ask this, and I'll get you out of here on this, but a lot of resources are being still harnessed, despite the fact that we might have downstream effects that improve costs. Is there any room for artificial intelligence in legal help? Is that something AI can do? Is it something you've thought about? I know AI seems like the answer for everything these days. But it does seem like, especially in patient navigation, not just with legal help, but with a lot of these simple things of identifying resources, explaining things to patients in a way that is on their literacy level, do you see any future where that might solve the need for having to pay a lawyer, and yet still provide the services to patients?
Qasim Hussaini: Absolutely. I think AI can absolutely help, but the key would be using it as infrastructure support, not as a replacement for human legal judgment. I don't think it'll replace lawyers in cancer care, AI, but it probably can dramatically improve early identification, triage, and even navigation of legal risk, essentially. That's something that I've thought about exploring a good bit, how do we use a lot of the data that we have to potentially train an AI model to see if it can help us catch legal risk better? Even if we're able to develop a model such as those, how do we embed that in the multiple different EMRs that are used around the country? But I think the point of care is probably the most helpful part in the chart that I showed, the upside-down triangle. The point of care can AI flag patients at high risk of legal problems based on their insurance type, employment status, treatment intensity, missed appointments, financial distress, I think it could do a lot of those things, and then it gets pushed over to essentially a human to guide them. And there's two things that I'll say adjacent to the question you asked, legal difficulties don't just impact patients that are low income.
We tend to think of that from a financial navigation perspective, because we typically provide that to people who are lower income. Now, patients who are lower income will have a lot more legal difficulty, but legal risks essentially impact everyone across every socioeconomic strata are what we've observed. You could be low income, you could be middle class, a middle-class American family, or it could be a higher-earning household income, earning more than $500,000, and you still have legal difficulties. So legal screening should include all of those, and I think AI could slot itself fairly well in terms of catching some of these flags early.
Daniel Joyce: Yeah, that's a really awesome point. We found the same thing looking at financial toxicity and low-income subsidies and paying for drugs, that actually, the very poor get access to help that we have. However, there are people who don't meet the criteria of very poor and don't have access to those subsidies, and yet are still poor and still can't pay for these drugs, and those patients have no resources available to them. So low-middle-class, middle-class people, these are people who you'd think don't need help, but they really do, because these costs are getting outrageous.
Qasim Hussaini: Absolutely. And a lot of the legal aid organizations that exist... First of all, there are a lot of legal deserts, more legal deserts than there are hospital deserts. But a lot of the legal agencies that exist typically just target the low-income folks, which is a problem, because everyone's having these legal difficulties. So going down the route of a medical-legal partnership can be limited in scope if that's... That's one avenue of helping people, but it's limited, because it doesn't help people above that FPL.
Daniel Joyce: Absolutely.
Qasim Hussaini: Yeah.
Daniel Joyce: Well, Qasim, this is really, really awesome work. Congratulations. I can't wait to see what you guys are going to publish next and where this goes. A really brilliant idea, brilliantly executed, and I really appreciate you taking the time to explain it to us.
Qasim Hussaini: Thank you so much for having me on, Dan. I appreciate it.