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Oncologist and health care executive Yousuf Zafar discusses his article, “When cancer costs too much: Why financial toxicity deserves a place in clinical conversations.” Yousuf explains the concept of “financial toxicity,” a severe burden caused by both direct medical bills and indirect costs (like time off work or child care) associated with cancer treatment. He reveals the sobering statistic that over forty percent of patients deplete their savings within two years, but emphasizes that this distress is more than just a financial problem: it directly compromises treatment adherence, forcing some to skip appointments or forgo prescriptions. Yousuf highlights the critical lack of cost transparency in oncology and makes the case for why clinicians must proactively screen for financial strain just as they would for physical side effects. Discover why these difficult conversations about the cost of cancer are essential for improving patient outcomes and quality of life.

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Transcript

Kevin Pho: Hi. Welcome to the show. Subscribe at KevinMD.com/podcast. Today, we welcome back Yousuf Zafar. He is an oncologist, and today’s KevinMD article is “When cancer costs too much: Why financial toxicity deserves a place in clinical conversations.” Yusef, welcome back to the show.

Yousuf Zafar: Thank you so much for having me, Kevin. It is a pleasure.

Kevin Pho: Tell us what this latest article is about.

Yousuf Zafar: This latest article is about one of the things that impacts cancer care more than anything else, and yet, for the most part, it remains hidden. That is the financial impact of cancer treatment. I think a lot of people realize that cancer treatment and cancer can cause physical toxicity, such as side effects like nausea, fatigue, diarrhea, and lack of appetite. These are all things that we associate with cancer toxicity.

The part that we do not often associate is the financial toxicity of cancer treatment. Despite having insurance, patients can pay a lot out of pocket. They can go into debt because of cancer treatment and the direct and indirect costs associated with it. The point of my article really is to continue to bring it to light. We need to keep it at the forefront of our minds, for clinicians and non-clinicians alike, to realize that this is something we have to address in order to ensure patients are getting the best treatment possible.

Kevin Pho: Give us some clinical scenarios where that financial toxicity impacts patients. Is it things like deductibles and chemotherapy leading into deductible payments? Are they not able to get their medicines because of finances? Just give us examples of what exactly that might look like.

Yousuf Zafar: It is sadly and surprisingly mundane and common in terms of how patients are impacted by cost. Part of it is insurance design. We all have more copays, coinsurance, and deductibles, so this is all cost-sharing where we are paying more and more out of pocket for our health care. You layer that with the fact that cancer treatment is becoming more and more expensive. More of the higher costs are being shifted over to patients. Being on one particular drug for the course of a year could cost a patient thousands, if not tens of thousands, a year. Those are the direct expenses.

Then there are indirect expenses as well. Travel to cancer treatment, special diets, lodging, medical equipment, time off work, and child care are all costs that add up as well and do not often make it to the ledger when it comes to tallying up the cost of treatment. Both of these direct and indirect costs can have a real impact on how patients experience their treatment.

Kevin Pho: Do you have cases where patients forego their cancer treatment because of these direct or indirect costs?

Yousuf Zafar: Yes, absolutely. I think the sad part of it is that when patients are foregoing their treatment, they are often doing it in silence. It is not like saying: “OK, you cannot be on drug A because you cannot afford it, so we will switch to drug B.” More often than not, a patient is prescribed a drug. Now more and more, a lot of cancer drugs are oral pills. Maybe they are not taking the pills as prescribed because they do not want to go and get another copay for that prescription. Even worse, maybe they are not taking their supportive care medications, like their anti-nausea medications or pain medications, as directed because they do not want to go refill that prescription. All of that impacts the quality of their cancer care and their ability to tolerate treatment.

Kevin Pho: In the primary care setting, when it comes to things like hypertension and diabetes, I generally have a range of treatments from inexpensive generics to expensive brand-name medications. However, I could imagine as an oncologist your menu is a little bit more limited in terms of what you can offer patients if they cannot afford the preferred treatment.

Yousuf Zafar: Absolutely. It is not that there are drugs out there that have less expensive alternatives that we can go to. What we end up having to do is make sure the patient is talking to us and that we are talking to the patient about the cost of cancer treatment. Then we connect the patient to appropriate resources. Financial assistance programs, financial counselors and navigators, pharmacists, and social workers can help the patient navigate the expenses of cancer treatment. They can apply to financial assistance programs that are either run by nonprofits or by the pharmaceutical companies themselves.

Then we continue to have that conversation with the patient: “How are you doing in terms of affording your treatment? What is the benefit you are getting? Is the benefit that you are getting from treatment meeting your goals of care, and is that worth the physical, financial, and emotional toll of that treatment?” I think we have to take this holistic approach. It is not just about finding a less expensive drug. We need to ask what your goals of treatment are, how you are coping with it, and how we can help you achieve those goals holistically.

Kevin Pho: As far as you know, are there any studies looking at patients who may not be able to afford cancer treatment? Has that crept into any type of mortality or morbidity impact?

Yousuf Zafar: Yes, absolutely. I spent almost 20 years at Duke studying this very question while I was an academic physician. This was the driving force behind my academic career. My team and I published a number of studies on this issue of financial toxicity, really describing the impact that it has on patients. Many other friends and colleagues around the country and around the world have now started focusing on this topic. I think there are a couple of studies that have been really important that have shaped the understanding of how financial toxicity impacts cancer patients.

One of those studies focused on how financial toxicity impacts survival. What the investigators found was that among patients who declared bankruptcy and had a cancer diagnosis, those patients who did declare bankruptcy were at a significantly higher risk of mortality. Experiencing financial toxicity from cancer treatment directly impacted their chance of survival. That is likely due to intermediary factors like adherence to treatment and quality of treatment because of cost. There is a lot of evidence that it has a direct impact on the quality of cancer treatment and how well patients do.

Kevin Pho: In general, how are costs approached during an oncology visit? I can imagine patients come to you already overwhelmed because of the diagnosis, and you add the stress of financial toxicity on top of that. I am sure it is a very delicate conversation. So in general, how do oncologists approach that tricky subject?

Yousuf Zafar: I think we are doing a better job approaching it today than we did 10 years ago, but we still have a lot of room for improvement. What I have always talked about throughout my career, and what others are talking about as well today, is that when you talk to a patient about their cancer treatment, let them know that there might be costs associated with it. As an oncologist, I might not have all the answers. I might not know what the cost of one particular treatment is versus another. Just having that discussion and opening that pathway of a conversation for a patient makes them more comfortable, and the evidence suggests that as well.

It allows us to then identify resources for that patient, like a financial navigator or a social worker who may be able to help further. What we have been talking about is just starting with a simple question: “Are you able to afford your treatment?” Take it from there, knowing that not everyone has all the answers. At least it helps build that relationship with a patient and that understanding that there is more going on that needs to be addressed.

Kevin Pho: In fact, in your article, you reframe financial toxicity as a modifiable risk factor similar to nausea and fatigue.

Yousuf Zafar: Absolutely. It is a modifiable risk factor because it is a risk for non-adherence for treatment, but it is a risk that we can impact.

Kevin Pho: You mentioned resources, financial navigators, and social workers. What are some of the tools that they use to help ease the financial stress on patients?

Yousuf Zafar: There are a couple of things: one is education, and two is direct connection to some of those resources. First, in terms of education, I think financial navigators can do a really good job of educating patients around their insurance benefits. They help them understand what a copay, coinsurance, and deductible are. They explain what in-network versus out-of-network means. They teach ways to talk to your insurance company to make sure you are getting the most out of your benefits. That education piece is critical.

Then it is connecting patients to resources like copay assistance programs. There are other resources that can help patients with some of their bills. Even for patients who are in cancer treatment, there are organizations out there that can help patients pay for some of their daily expenses. Family Reach is one such organization, for example. Not everybody knows what resources are out there. A financial navigator is a great person to look to who has collected those resources and can not just educate patients but guide patients to some of the financial assistance.

Kevin Pho: You also write in your article that financial stress is often internalized and surrounded by shame. How do you as a physician break through that barrier and create that safe space for a patient to admit that they may be struggling financially?

Yousuf Zafar: I think oncologists have been reluctant to have that conversation. I think many physicians are, but I am not sure. It is just a factor of oncology because it is something we feel that is not within our domain of control. I think if we move beyond that, realize that honestly, it is about having a very simple conversation first. Taking that first step and asking a patient a simple question like, “Hey, are you having trouble paying for your care?” All that does is build a relationship and build trust in that two-way communication where maybe something can come of it. I think that is the first step to take: realize that we do not need to fix the problem right away. If we can acknowledge it, that first step goes a long way.

Kevin Pho: Now zooming out, is there anything from a policy standpoint that can ease that financial impact of cancer drugs on patients?

Yousuf Zafar: I think there is. You think about the stakeholders who are involved. It is the pharmaceutical industry, it is the insurance industry, and it is health systems and providers. We are a part of the problem as well, and I think we have to acknowledge that too. I think looking for ways to decrease that cost-sharing that patients see is a really important first step. For treatments where we know there is a benefit, where we know it can save lives, increase the length of lives, and improve quality of life, should that patient see cost-sharing? Cost-sharing was originally designed to decrease health care utilization. In this case, that health care utilization can improve outcomes and decrease costs down the road. Maybe one first step we can take is looking at how we decrease cost-sharing in these high-value, high-impact interventions.

Kevin Pho: We are talking to Yousuf Zafar. He is an oncologist, and today’s KevinMD article is “When cancer costs too much: Why financial toxicity deserves a place in clinical conversations.” Yusef, let’s end with some take-home messages that you want to leave with the KevinMD audience.

Yousuf Zafar: For me, my medical career started in a place of thinking about how I can help a patient one-on-one with their cancer. It has moved now onto a place, in my current position as a chief medical officer at a company, of thinking about how I can impact cancer patients on a different scale. I think that is something that I wish I knew starting out in my medical career. Yes, there is a way to impact patients one-on-one. I will always cherish that role as a clinician. But I think you have seen this in your career as well, Kevin. There is absolutely a way to have an impact on patients on a different scale. I think it is always important for us physicians to keep that in mind as well.

Kevin Pho: Yousuf, thank you so much for sharing your perspective and insight, and thanks again for coming back on the show.

Yousuf Zafar: My pleasure. Thank you for having me.