As oncologists and oncology practice managers know all too well, the increasing cost of cancer care has created a difficult financial conundrum for many patients with cancer. Yousuf Zafar, MD, MHS, Associate Professor of Medicine, Duke Cancer Institute, was the first to coin the term financial toxicity in the literature. Oncology Practice Management (OPM) asked Dr Zafar for his perspective on this topic.
OPM: Can you define what you mean by financial toxicity?
Yousuf Zafar, MD, MHS: Financial toxicity addresses the potential financial harm that patients may experience as a result of their cancer treatments. That includes direct financial harm in the form of out-of-pocket expenses, copays, and coinsurance, as well as indirect financial harm in the form of having to miss workdays or other expenses related to their overall care.
OPM: How or when did you begin to focus on this topic?
Dr Zafar: I became more aware of financial toxicity with the economic downturn in 2008, when patients began asking me for less expensive drugs, less frequent office visits, or less frequent testing.
In particular, I had one young patient who was diagnosed with rectal cancer. He was fully employed and had health insurance. I started his treatment with standard radiation and oral chemotherapy, and he did well with the treatment and tolerated it well. But eventually the cancer progressed. I said that he should have more chemotherapy, but he said he couldn’t do it. I told him he would do well, but he said, “I can’t really do this regimen.”
As it turned out, he was not concerned with the drug toxicity as much as with the “financial toxicity.” Although he had insurance and a job, he did not have prescription drug coverage. He paid for the oral chemotherapy out-of-pocket, so in approximately 5 or 6 weeks he had a debt of $3000 to $4000. That was a serious financial toxicity accumulated in a short period, and it was, in part, because I did not appropriately address the cost issue with him. I did not ask him the simple question, “Do you have prescription drug coverage?” That could have saved him thousands of dollars.
OPM: Does financial toxicity affect patient adherence and, therefore, outcomes?
Dr Zafar: We have data suggesting that financial toxicity does impact patient outcomes. My research has focused on patient well-being and adherence related to financial toxicity. We found that patients are spending their retirement savings, they are spending less on groceries and clothing, they are working longer hours, all to help pay for their cancer treatment. My work and the work of many others have shown that patients are at risk of being nonadherent to their cancer treatment, because they cannot afford it.
At a recent meeting of the American Society of Clinical Oncology (ASCO), I was a discussant for a study that showed the association between bankruptcy and cancer diagnosis. Previously, the investigators found a 2.65 times higher risk for declaring personal bankruptcy for patients with cancer compared with people without cancer.
This year at ASCO, the same group of investigators presented a follow-up study showing a significantly higher risk of mortality for patients with cancer who had declared bankruptcy versus those who did not. So financial toxicity has a serious impact on patient well-being and outcomes.
OPM: Cancer has been with us for decades. Has the financial cost of cancer care changed?
Dr Zafar: Patients are living longer and receiving treatment for longer periods. That treatment is more expensive, and because it is more expensive, patients have greater cost-sharing and are carrying a greater cost burden, as a result. We have seen more cost-sharing in the form of higher premiums, higher deductibles, higher copays, and, most important for patients, more multitiered formularies. In one study by Kaiser Permanente, before 2013 no formularies had 4 or more tiers. In 2013, 25% of the formularies surveyed in the study had 4 or more tiers. Those tiers are most important for our patients, because the oral chemotherapies and many of the expensive supportive care medications fall into those higher tiers.
Cost-sharing is most helpful when there are true alternative treatments. When, for example, you can prescribe a less expensive but equally effective medication, this is when cost-sharing becomes useful. However, in cancer there are few alternatives, but patients are still asked to shoulder an unbearable cost burden for what is their only, and potentially life-extending, treatment option.
Those who care for patients with cancer should be concerned about financial toxicity, because it can harm the well-being of their patients. It can worsen their outcomes, and result in subpar care. It can harm their overall well-being, and there is evidence that it may shorten their lives.
OPM: What can providers do to help alleviate this financial burden of cancer care?
Dr Zafar: From the societal perspective, the question is how to lower the costs of the intervention, and how to reduce cost-sharing.
But those are long-term solutions that do not necessarily help our patients tomorrow. That is where providers, practice managers, and financial counselors become so valuable to addressing financial toxicity. At the patient level, it comes down to communication and patient engagement.
We need to be asking patients about the costs they are experiencing. We need to ask patients if they have prescription drug coverage before prescribing expensive oral chemotherapy. We need to check this with patients, the way we do with physical toxicity.
When we prescribe a new drug, we need to check with our patients every so often, on a regular basis, to ensure that they can tolerate the treatment that we have prescribed. Similarly, we should check whether they can tolerate the financial toxicity of that treatment.
OPM: Do you have any advice for providers to get the conversation going?
Dr Zafar: Absolutely. There are barriers to having this cost discussion, including embarrassment and discomfort. From the perspective of the physicians, many physicians do not want to be perceived as being interested in reimbursement, for example. When I have this conversation with my patients, I am very clear about the distinctions between reimbursement versus financial toxicity.
I tell my patients that I want to make sure they can afford the treatment I believe is best for them, and I do not want them to experience any financial harm because of that treatment. As a provider, you should ask what you can do to make sure that your patient can afford that best treatment. You can tell the patient you do not know much about the cost of the treatments that you prescribe. In fact, I often do not know my patients’ insurance situation or the details of their insurance plan.
But I see it as my job to broach the topic, and to know that patients should be comfortable discussing it. Then, my job is to point them to the right resource for financial support when needed. Then, at my institution, a pharmacist, a financial counselor, or a social worker can spend more time getting the details of what the specific costs are for the patient, and where the patient may find resources to pay for some of the expenses.
Let me be clear that it is not necessarily the physician’s job to know all the details of the costs or the insurance of our patients, but it absolutely is the physician’s job to mitigate any harm, physical or financial, that the patient may experience.
OPM: When you bring up cost, are patients interested in having this conversation? Have you done any studies or surveys about whether patients want to have this conversation?
Dr Zafar: We found that about 50% of patients we surveyed are interested in talking about the cost of their care. But only 19% actually have that cost discussion. This is because some of the barriers that patients perceive, such as they do not want lesser quality care if they say that they cannot afford the best quality care.
It is the job of the physician to ensure that patients will not necessarily get subpar care if they talk to us about their financial toxicity. Rather, we can look for ways to try to help them afford that best care.
This concern that they may get lesser quality care is a major barrier. Patients also say they do not feel it is their doctor’s job, or their doctor does not know how to help them, or they do not feel it is something they should bring up at clinic. These are surmountable barriers, and I believe it is the role of the physician to better understand what patients are experiencing, and then point them to the appropriate resource.
OPM: Do oncologists have time to have such cost discussions?
Dr Zafar: I am the first to admit that I do not have enough time with my patients, but I want to make sure that within the time I spend with my patients I am trying to address some of the harms that they are experiencing as a result of the care I prescribe. This is crucial.
Furthermore, it actually does not take much time to ask the patient, “Do you have prescription drug coverage?” or get a pharmacist into the room and let the pharmacist review the prescription card and figure out how much the treatment would cost the patient. There are ways of doing this without taking much time; in fact, it can be done in seconds, and it could save the patients thousands of dollars.
OPM: What is the role of patients in becoming educated about their insurance coverage and their share of the cost of treatment?
Dr Zafar: That’s a very important point. The full burden should not fall on either the provider or the patient. Both parties have a responsibility. From the patient’s perspective, patients need to be aware that although they have insurance, they may experience high costs. They need to address that up front, because it is easier to prevent medical debt than to deal with significant medical debt. Patients should also be aware of what resources are available. But again, this begins by having that discussion between the provider and the patient in a timely manner.
OPM: What do you see as the key message about financial toxicity?
Dr Zafar: The key message regarding financial toxicity is that it is a harm experienced by more patients than we realize. There are some very simple interventions we can use today that can reduce some of that harm. The primary intervention right now is communication. Begin the conversation with your patient.