Linking financial toxicity to medication adherence and quality: a conversation with Dr. Yousuf Zafar

Posted by Ian Manners on April 28, 2021

Thanks to a growing body of research over the past ten-plus years, the link between patient financial distress—so-called "financial toxicity"—and negative health-related outcomes has become abundantly clear. But when Vivor first got started, the research on interventions was surprisingly limited. In other words, the medical community was learning how to describe the problem but struggling to identify practical solutions.

In 2016, we took a novel and promising step towards addressing this gap, by securing the first-ever NIH-funded Small Business Technology Transfer (STTR) grant for developing and testing a financial toxicity intervention. Together with a research team at the Duke Cancer Institute, we received a $1.7 million "fast-track" award and quickly got to work.

Five years later, the results are in: patients with access to Vivor's technology were three times as likely to apply for—and three times as likely to receive—financial assistance resources. The full study results, published recently in JCO Oncology Practice, describe the design of a 200-patient randomized controlled trial where our joint team used a research-only mobile application to augment financial counselors. And while we have since pivoted and are not offering a patient-facing mobile application today, the core technology remains the same as the one studied in this trial.

So what does this new data mean in practice, especially for health systems? Recently, I talked with the study’s principal investigator and a longtime Vivor advisor, Dr. Yousuf Zafar, to get his perspective on the study itself as well as the connections between access, adherence, and outcomes. Dr. Zafar, who together with Dr. Amy Abernathy coined the term “financial toxicity” in 2013, has seen the effects of financial distress in his Duke Cancer Institute oncology practice and has become one of the most prominent academic voices championing action.

Here’s what he had to say:

Q: What got you interested in the study of financial toxicity?

It was quite simply my patients. I came on faculty as an oncologist in 2008, right around the time of the recession. At the time, I was a palliative care researcher and noticed this trend of cost playing a role in care decisions. Patients would ask me if there was a less expensive drug, or if they could travel to see me less frequently, or whether they could put off their CT until later in the year.

This was all because they had trouble affording treatment—and these were patients who were insured. I remember going to dinner one night with my spouse, who’s also an oncologist, and I told her that I’d been hearing more and more from patients who were worried about affording their care. She pointed out how little is known about patients and their experience with cost, suggesting it could be the start of a research career. She was absolutely right. A few weeks later, I saw an announcement from the HealthWell Foundation looking to fund a study in this area. I applied, got the grant, and my work to focus on patients and their experience with cost took off from there.

Q: Why did you pick the term “financial toxicity”?

It frames this experience as what it is—which is a side effect of cancer and cancer treatment. That puts it into a perspective that clinicians can relate to: We do everything we can to limit physical side effects. We have to do the same for financial side effects.

And those financial side effects are pretty significant. There’s strong evidence that patients with cancer are more than twice as likely to declare personal bankruptcy than those without cancer. When they declare bankruptcy, they’re 79 percent more likely to die than cancer patients who don’t declare bankruptcy. We’ve seen evidence from our studies that patients are more likely to sell property, work longer hours, take out loans, and go into debt to pay for their care. These are all patients with insurance.

To be clear, this doesn’t happen to all patients—but it is happening to a significant portion of them. And they’re not talking about it. They’re often going without the help that they need.

Q: When you first started studying this issue, what did you find in terms of different approaches to patient financial assistance?

Existing programs lacked access. Patient financial assistance as a whole was a black box with different rules and few programs were willing to provide much information upfront about how to get available support. Even now, it takes a tremendous amount of effort on the part of patients to find and apply for assistance.

There’s also the problem of consistency with how health systems are approaching it. There are two reasons for that: first, at the clinician level, providers still have a sense that there’s little we can do about the problem. As in, if I bring it up with a patient, I might be faced with a problem I can’t fix. That’s a misconception in many cases, but it’s a perception that’s still out there.

Then, from the health system’s perspective, it takes an investment to build a financial resource center for patients. Some administrators have yet to understand that link but the health systems that are very patient-focused understand that it is something that should be prioritized.

Q: Why do you think that provider organizations—and health systems in particular—should be concerned about financial toxicity?

Quite simply, we care about our patients. As an oncologist, I care very much about my patients’ experience with the drug. I care about the side effects they may experience physically. Are they going to get nauseous from the treatment? Are they going to get fatigued? Will they be able to function as they would like? These are the physical symptoms that I am trained to assess and intervene upon.

But there are financial symptoms as well. If a patient is not adherent to their treatment because of cost, or if the treatment is causing their family significant financial harm, that’s just as bad as if the patient is not adherent to the treatment because of physical side effects. That parallel is really important.

Q: Does that mean there’s a link between financial toxicity and quality?

Yes, I believe there is a strong association between cost and care quality. As a patient’s costs go up, they’re more likely to be nonadherent to care, and they’re more likely to have worse outcomes. High out-of-pocket costs have been shown repeatedly to impact adherence to care, health-related quality of life, and physical toxicities. We did a study with a group from the Dana-Farber Cancer Institute where we found that patients who had higher financial strain from their cancer care also had worse physical symptoms.

So, I think there are some pretty clear indications that patients who have higher out-of-pocket costs are more likely to do worse overall. It’s why one thing I want to work on at Duke is to make sure that we have better structures in place to provide financial counseling and financial resources for our patients.

Q: What about operational considerations? Why should CFOs pay attention to financial toxicity?

Anyone who works within a health system wants to make sure that the patients who are treated there are getting the highest quality care possible. They absolutely care about the patients.

But another aspect on their radar is the health system’s bottom line, of course. If a patient is more likely to afford their care, they’re more likely to pay their hospital bills, and the health system is less likely to face unpaid bills. There’s a strong correlation between increased patient out-of-pocket cost and health system bad debt.

So while patient wellbeing is a priority for everyone, the understanding that there’s a financial implication for the health system is another factor.

Q: What made you interested in collaborating with Vivor for this research study?

Vivor was offering a real solution—for patients—in a time when others weren’t. The industry spends a lot of time complaining about costs and describing the affordability problems that cancer patients face, but very few people have stepped into the world of intervention. To actually present patients with an option, with a concrete way to reduce their costs. It’s really impressive what you all are doing. We can acknowledge the limitations of patient financial assistance programs, but these are the solutions we have to help patients afford their medications today. And Vivor helps them find and access these programs so they can stay adherent to the right treatment.

Q: What are the important takeaways to note from this study?

This was a pretty big study and really, the first of its kind—I think it’s safe to say that there haven’t been too many randomized controlled trials of 200 patients looking at an intervention to try to reduce financial strain. So, I’m proud of the work we did on this.

I’d say the two takeaways are this: First, it’s tough to measure financial strain in patients who are already dealing with so much between treatment and their ongoing struggles with illness. When you’re connecting with people remotely to learn about their financial experience with cancer care, it’s a difficult endpoint to pin down. It’s not like we’re asking whether the cancer grew or not. We can’t just measure financial strain on a CT scan and get a yes or no answer.

Second, despite some of the troubles that we had in conducting this study, we still found that the patients who had better access to financial assistance through Vivor’s technology were about three times as likely to apply for—and three times as likely to get—financial assistance than patients in the control arm.

I think what this speaks to is the importance of access and exposure to financial assistance. In general, if you provide people a little bit of handholding and you connect them to the appropriate resources, they’re much more likely to get financial assistance. More specifically, if you provide an infrastructure where patients can access financial assistance, they take advantage of that. If you extrapolate from the other available data, we know that it reduces their risk of non-adherence as well as poor outcomes like worsening quality of life and bankruptcy. Even a minimal investment in providing a financial resource infrastructure for patients will pay off for patients and health systems, and everything we can do to help patients afford the right treatment and stick with that treatment is something that we have to do today.


Read the full study results in JCO Oncology Practice: Mobile Application to Identify Cancer Treatment-Related Financial Assistance: Results of a Randomized Controlled Trial