YOUSUF ZAFAR, M.D.

A COUPLE YEARS AGO, I met a patient — let’s call him Mark &mdash; with newly diagnosed rectal cancer. Mark was young and generally in good health, so I was fairly certain he would have no problems tolerating the oral chemotherapy pills and radiation therapy he needed. Mark received his full course of treatment, and, as expected, tolerated it well. But, unfortunately for Mark, his post-treatment CT scans showed that his cancer had spread to his liver. I called him in to discuss these results and talk about his treatment options, which included the same oral chemotherapy pills as a part of his overall plan. As I was describing the details and side effects of his new treatment plan, including the oral chemotherapy, Mark interrupted me mid-sentence and said, “Doc, I don’t think I can take this treatment.” His statement surprised me because he previously had experienced no problems with the chemotherapy. I asked Mark if he was concerned about side effects or worse quality of life, but he was more worried about the financial side effects. Mark revealed to me that, because he did not have prescription drug coverage from his health insurance plan, he had to pay entirely out-of-pocket for the oral chemotherapy, resulting in thousands of dollars of medical debt.

More and more, we are hearing stories like Mark’s, where patients face the “financial toxicity” of cancer treatment in the form of catastrophic bills, despite having insurance. In reality, the vast majority of cancer patients don’t face insurmountable medical debt, but even small, unexpected medical bills can add up. Our research, and that of others, has shown that cancer treatment-related expenses can lead insured patients to cut back on spending on food and clothing, cut out vacations and even spend retirement savings, all to make ends meet. Why is this happening? Two of the greatest contributors are high drug prices and greater cost sharing on the part of insurers.

First, the price of chemotherapy has increased dramatically in the past few decades. In the 1970s and 1980s, on average, a month of chemotherapy cost a few hundred to maybe a few thousand dollars. Today, chemotherapy on average costs $10,000, and can range much higher. The price of drugs has increased for many reasons, at least in part due to the new biologic and immunotherapy agents entering the market. These drugs can be more expensive to develop and produce in comparison to traditional chemotherapy. In addition, newer drugs often work better and are tolerated better by patients, which means they are used for a longer period, thereby resulting in higher overall costs. In colorectal cancer, patients might be treated with the chemotherapy Xeloda (capecitabine) or the targeted drugs Stivarga (regorafenib) or Lonsurf (trifluridine/tipiracil) — all oral drugs that can incur high copays, and that are used for longer periods of time.

Second, patients are responsible for a greater portion of treatment costs via higher premiums, deductibles and copayments, not to mention that many plans include co-insurance. Under the Affordable Care Act (ACA), over 16 million previously uninsured Americans are now covered, and the ACA has provided some protections: For instance, patients with pre-existing conditions (like cancer) cannot be denied coverage as a result of that condition. The out-of-pocket maximums introduced by the ACA are a big step in the right direction. However, I would argue they don’t do enough. As of 2016, the out-of-pocket limit is $6,850 for an individual and $13,700 for a family plan. While these limits are better than none at all, nearly $7,000 is a lot for the average American to cover in one year; and keep in mind that, as soon as cancer treatment crosses over to the next calendar year, that maximum resets. We have seen a lot of progress in the past few years, but we have a long way to go.

Until drug prices are more reasonable and insurance coverage is more comprehensive, what can we do to better afford the best cancer treatment? First, we have to consider the cost of care as a side effect of treatment. Then we are more likely to address the problem early on in treatment, not unlike nausea or fatigue. Patients should feel comfortable talking to their cancer care teams if they have difficulty paying for care. Many patients are concerned they will receive lesser-quality care if they broach the topic of costs, but our research has shown that, in the vast majority of cases, costs can be lowered without changing treatment at all. Patients should talk to their insurance providers about coverage limits before starting treatment. And they should ask to talk to financial counselors at their cancer treatment facilities to make sure they have access to all available financial resources. Medicare beneficiaries should strongly consider obtaining supplemental insurance, and all patients should consider signing up for prescription drug coverage.

I don’t expect that drug prices will drop in the near future, nor do I expect cost sharing to lessen. Instead, oncologists and patients must work together to reduce the financial toxicity of cancer treatment. Through our research, we are looking for new ways to educate patients about costs of care, promote cost discussions between patients and providers, and link patients to appropriate financial resources. Until these tools are available, engaging with patients and providers about costs is a first, important step. If I had asked my patient, Mark, about whether he had prescription drug coverage before prescribing him an expensive treatment, he could have avoided thousands of dollars in medical debt. Mark’s financial misfortune serves as a stark reminder to me of the silent threat of financial toxicity and what we must do to reduce it.

 Dr. Zafar is a health care delivery researcher with a focus on improving care delivery for patients with advanced cancer. He is an associate professor of medicine and public policy at Duke University, a member of the Duke Cancer Institute and an affiliate in the Duke Global Health Institute.

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