For patients newly diagnosed with cancer, their first thought is usually not what a treatment will cost, but how long they will live.

And, patients are living longer, thanks to innovative cancer treatments developed over the last decade. Prior to the introduction of imatinib and nilotinib for the management of chronic myeloid leukemia (CML), the 5-year survival rate was 30%; today, nine of 10 patients have a normal lifespan.1

With this increased lifespan, however, out-of-pocket costs have become so high that a new term has been coined: “financial toxicity.”2

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“ASCO really believes that cost of cancer care is unsustainable and that reform is desperately needed,” Sandra M. Swain, MD, President of the American Society of Clinical Oncology (ASCO) told This includes “in general, more transparency. Patients need to know what they are facing before they are prescribed a drug. When you get any type of service, you usually know what you pay for,” added Dr. Swain, who is also Medical Director of the Washington Cancer Institute at MedStar Washington Hospital Center and Professor of Medicine at Georgetown University, Washington, DC.

However, this is “a hard discussion to have, frequently when patients are so anxious and upset,” she noted. “At this emotionally charged time in their lives, patients and physicians don’t want to make it about money.”

She noted oncologists strive to deliver evidence-based, affordable medicine to patients and families but prices of drugs may have little, if anything, to do with their efficacy. “There is no evident correlation between developing the drug and price, and no link to pricing of that drug and its effectiveness,” Dr. Swain said.

Costs are not captured in clinical trials or required by the United States Food and Drug Administration (FDA) for approval.3 “Of the 12 drugs approved by the FDA for various cancer indications in 2012, 11 were priced above $100,000 per year,” Hagop Kantarjian, MD, of The University of Texas M. D. Anderson Cancer Center, Houston, TX, and colleagues wrote in Blood.4

Dr. Swain called for clinically meaningful outcomes demonstrating a drug’s value and, for agents with “very little survival benefit, patients should know what they are getting for the treatment.” This calls for a “frank discussion” with all of the issues related to a drug that included efficacy, anticipated length of survival, toxicity—and costs. If an agent is particularly toxic, for example, a patient may decide “it’s not worth it.” In 2009, ASCO established a Cost of Care Task Force, which developed a Guidance Statement on the Cost of Cancer Care included “defining value in cancer care.”3

Another issue with respect to costs of cancer drugs is that, as Dr. Swain said, “most patients expect insurance to pay.” Increasingly, though, “that’s not true.”

A recent study from the Fred Hutchinson Cancer Research Center in Seattle found that people diagnosed with cancer were 2.65 times more likely go bankrupt than those without cancer.5 Dr. Kantarjian agreed: “Medical debt is now the most common cause of personal bankruptcy in the United States,” he and his colleagues wrote in a special article in the Journal of Clinical Oncology, published online on May 7th. “Most debtors were well-educated homeowners with middle-class occupations; approximately 75% had health insurance.”6

In a pilot study, “the first to assess financial distress among insured patients applying for copay assistance,” Zafar and colleagues found that 75% of 254 participants had applied for drug copay assistance. Among all participants, 42% reported “a significant or catastrophic subjective financial burden; 68% cut back on leisure activities, 46% reduced spending on food and clothing, and 46% used savings to defray out-of-pocket expenses.” They found “to save money, 20% took less than the prescribed amount of medication, 19% partially filled prescriptions, and 24% avoided filling prescriptions altogether.”7

Dr. Kantarjian told the cost of cancer drugs began to bother him when the three new drugs approved for CML in 2012 all had “insane prices”—bosutinib, at $118,000 per year; omacetaxine at $28,000 for induction and $14,000 for maintenance course; and ponatinib, $138,000 per year—and when he learned in January 2013 that the annual price for imatinib had increased from $30,000 when it became available in 2001 to between $80,000 and $92,000 in 2012.6