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"Financial Toxicity": A New Term, but Not a New Reality for Many Cancer Patients

Debra Madden
A cancer survivor shares her experience and frustrations with cancer care costs and looks to changes within the healthcare system to improve the value of care in the future.
God, I love my father. And I don’t remember ever dealing with my insurance company again. From that point on, I believe that my parents gave me the wonderful gift of taking that on for me, worrying about the “PTSD-like” impact caused by that terrible episode. But here’s the rub: as awful as that experience was, the fact is, so many cancer survivors have gone through—and are currently experiencing—much worse. A dear friend of mine was also diagnosed with Hodgkin’s lymphoma as a young adult, but unlike me, she did not have health insurance. Fortunately, she did extremely well with her treatment. But she began her adulthood as a cancer survivor who was carrying the weight of tremendous debt—debt that haunted her for years until she finally paid everything she owed more than a decade later. We were both treated during the late 1980s, well before the era of genomic medicine, and the costs of cancer treatment were high even then.  

The Cost Discussions Today

Fast forward to today, and the costs of cancer treatment are even higher. During this year’s American Society for Clinical Oncology (ASCO) Annual Meeting, I was struck by a new phrase that was on everyone’s lips: financial toxicity. I appreciated that this very real adverse effect of cancer treatment finally had a name—but I also recall thinking that while the term was new, the condition was not. Yet, the crucial difference now is that more and more oncologists, other healthcare providers, patients, advocates, and other stakeholders are speaking openly about this and actively working on measures to “prevent or treat” this serious toxicity of cancer.

It’s impossible to escape the fact that cancer treatments are becoming increasingly expensive, particularly for the novel targeted therapies that have emerged for many cancer types. According to a study published in the Journal of Clinical Oncology, targeted therapies accounted for 63% of all chemotherapy costs in 2011.1 One relevant example is trastuzumab (Herceptin) and another is the more recently approved HER2+ targeted therapy, pertuzumab (Perjeta). In the CLEOPATRA clinical trial, first-line treatment with the chemotherapy drug docetaxel combined with trastuzumab and pertuzumab significantly improved overall survival in women with metastatic HER2+ breast cancer by an average of nearly 16 months. However, trastuzumab costs approximately $4500 each month and pertuzumab, the newer agent, about $6000 per month. Depending on the duration of treatment and the taxane chemotherapy agent used, it is estimated that the total cost can run as high as $195,000.2

Since cancer is an expensive disease, shouldn’t the costs be covered by insurance for those of us who are insured? In my 20s, my fear was that my insurance company was not acting in good faith, was playing games, and was a bad actor who would not appropriately pay for treatment costs that were rightfully covered by my insurance plan. But today, for many, the concern is different: that although insurance is “paying” for cancer care, insured patients are facing ever increasing out-of-pocket (OOP) costs. As the societal costs of cancer care increase—due to our aging population, an increased risk of developing cancer with older age, improved access to cancer care, and access to more expensive treatments that may have minimal effect or be inappropriately used contrary to the evidence—an increasingly significant portion of these rising costs have shifted to the patient.3 Insurance premiums, deductibles, and specialty visit co-pays continue to rise, as have prescription drug co-pays; in fact, high OOP costs are most frequently due to prescription medications, followed by outpatient care and hospitalizations.

A growing percentage of insurance companies now divide specific drugs into different tiers, including a “specialty tier,” which typically comprises the most expensive and innovative agents, where patients are required to pay a percentage of the drug cost that may be as high as 33%.4 Further complicating the problem is the disparity in insurance coverage between intravenous treatments and orally administered anticancer agents (oral parity). If patients’ oral chemotherapy drugs are associated with high OOP costs, this may increase the risk for nonadherence, where patients skip pills to make their prescriptions last longer or do not get refills because they cannot afford the cost. Private health plans may have a cap on the maximum OOP expense for patients, but there is no maximum OOP expense for Medicare enrollees.  

Ascribing Value to Cancer Care

Compared with patients affected by other chronic diseases, those with cancer have higher OOP costs. Their concerns over the financial burden can be likened to the physical toxicities associated with cancer treatment, negatively affecting quality of life and preventing optimal care. A significant percentage of insured patients may spend their savings, work additional hours, cancel vacations, and cut back on other expenses whenever possible to afford their cancer treatment and in an effort to avoid going into debt. In addition, worry about financial distress has been associated with changes in treatment-related decision-making, such as deciding against a recommended treatment course due to cost and higher rates of nonadherence with oral chemotherapy drugs and hormonal medications.

According to Gary Lyman, MD, MPH, oncologist at Fred Hutchinson Cancer Research Center in Seattle, health economist, and co-director of the Hutchinson Institute for Cancer Outcomes Research (HICOR; Seattle), “For many, the indirect and out of pocket expenses for cancer care are more than they can handle, leading to interruption or even cessation of potentially lifesaving treatment…We know that cancer is one of the most, maybe the most, common causes of bankruptcy in the country.” In his role as HICOR’s co-director, he notes that “We’re trying to bring a greater awareness and a high level of science to the discussion of the cost and overall value of cancer care.” He explained that, in many cases, oncologists and their patients frequently have choices concerning which specific cancer treatment can be used. “We may have 2 treatments that give you the same overall benefit, but one is much less costly,” he stressed. “Therefore, it has a great value in the sense that you’re going to get to the same place, but you don’t need to go into bankruptcy or create enormous financial distress for yourself or your family.” 5

The good news is that the discussion of value in cancer care is a crucial one that is taking place with more frequency. A growing number of oncologists have begun to push back, being vocal about not prescribing new “me too” cancer drugs that are extremely costly yet provide little or no benefit for patients. Peter Bach, MD, director of Memorial Sloan Kettering’s Center for Health Policy and Outcomes in New York, and 2 physician colleagues announced to The New York Times that the hospital would not be offering Zaltrap (ziv-aflibercept), an angiogenesis inhibitor that was newly FDA approved for the treatment of metastatic colon cancer. Sanofi, the manufacturer of the drug, later cut the drug price in half.

Per Dr Bach, “There are drugs that don’t make much sense given how much they cost, given their small benefits. There are drugs that can cost up to $10,000 a month that provide, at the median, a few weeks or less than a month of additional life, but with substantial toxicity.”

In announcing their decision, Dr Bach and colleagues wrote the following: “At Memorial Sloan-Kettering Cancer Center, we recently made a decision that should have been a no-brainer: we are not going to give a phenomenally expensive new cancer drug to our patients. The reasons are simple: the drug, Zaltrap, has proved to be no better than a similar medicine we already have for advanced colorectal cancer, while its price—at $11,063 on average for a month of treatment—is more than twice as high. When choosing treatments for a patient, we have to consider the financial strains they may cause alongside the benefits they might deliver. This is particularly the case with cancer, where the cost of drugs, and of care overall, has risen precipitously.”6  

Value Calculators

Fortunately, several groups are facing the reality of financial toxicity head on and developing tools to help prevent this serious adverse effect of cancer. For example, in June 2015, ASCO released its Value Framework7 for assessing the value of new cancer treatments based on benefits, toxicities, and costs. Developed by the ASCO Value in Cancer Care Task Force, this conceptual framework will be used to establish standardized tools for oncologists, assisting them in discussing the relative value of specific new cancer therapeutics in comparison with established therapies. In addition, just last month, the National Comprehensive Cancer Network (NCCN) unveiled its new value initiative: the NCCN Evidence Blocks will be published within new versions of the NCCN Clinical Practice Guidelines in Oncology for chronic myelogenous leukemia and multiple myeloma. The costs and affordability of treatment will be included, in addition to the NCCN Guidelines’ standard measures of efficacy, toxicity, and quality of associated clinical research data. Per Robert W. Carlson, MD, CEO of NCCN, “NCCN Evidence Blocks will educate providers and patients about the efficacy, safety, and affordability of systemic therapy, serving as a starting point for shared decision making based on the individual patient’s value system.”8

As Dr Bach eloquently stated, “If we link drugs’ prices to their value, we can continue the vital quest to lengthen and improve people’s lives. We can draw a bulls-eye around the places where innovation is needed most, and we can mandate that treatments be affordable for patients. This last, vital part of the formula would require insurers to jettison the multi-thousand-dollar co-payments they often tack on to expensive specialty drugs.”9

To conclude, Oscar Wilde famously wrote the following in his masterpiece, The Picture of Dorian Gray, “Nowadays, people know the price of everything and the value of nothing.” But today, we as patients, advocates, caregivers, clinicians, and all other stakeholders, are beginning to take the necessary steps to change that. EBO  

Debra Madden is a cancer research advocate and a 2-time cancer survivor.

Debra blogs at Musings of a Cancer Research Advocate and you can follow her on Twitter at @AdvocateDebM.
1. Shih YCT. Smieliauskas F, Geynisman DM, Kelly RJ, Smith TJ. Trends in the cost and use of targeted cancer therapies for the privately insured nonelderly: 2001 to 2011. J Clin Oncol. 2015; 33(19):2190-6.
2. Nelson R. New standard of care in HER2-positive metastatic breast cancer. Medscape website. Published February 20, 2015. Accessed October 25, 2015. 
3. Zafar SY, Abernethy AP. Financial toxicity, part I: a new name for a growing problem. Oncology (Williston Park). 2013;27(2):80-81, 149.
4. Nelson R. Targeted therapies offer promise, but are they affordable? Medscape website. Published August 28, 2013. Accessed October 25, 2015.
5. Mapes D. Gary Lyman, oncologist, health economist, and HICOR co-director: helping patients and providers find true value in cancer care. Fred Hutch website. Accessed October 25, 2015. 
6. Bach PB, Saltz LB, Wittes RE. In cancer care, cost matters. The New York Times. Published October 14, 2012. Accessed October 25, 2015.
7. Value in cancer care. American Society of Clinical Oncology website. Accessed November 4, 2015.
8. NCCN unveils evidence blocks for CML and multiple myeloma [press release]. San Francisco, CA: National Comprehensive Cancer Network; October 16, 2015.
9. Bach PB. How the U.S. could cure drug-price insanity. Fortune website. Published September 17, 2015. Accessed October 25, 2015.
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