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

Debra Madden

I’ve never been one who appreciated the portrayal of cancer as “a battle to be fought,” since the expression implies that the cancer patient either wins or loses that battle. This becomes uncomfortably close to “blaming the victims” if their condition deteriorates. With that said, however, I do not shy away from using battle terminology to describe the experiences I had with my insurance company during treatment for my first cancer, Hodgkin’s lymphoma, when I was in my early 20s.

Soon after graduating from college, I was diagnosed with stage III Hodgkin’s lymphoma. Due to having extremely bulky disease, my treatment required grueling chemotherapy (8 cycles of MOPP [nitrogen mustard, Oncovin (vincristine), procarbazine, prednisone]) and ABVD (adriamycin, bleomycin, vinblastine, and darcarbazine), followed by 6 weeks of high-dose radiation. I had been having symptoms for at least a year before finally receiving my diagnosis, and I was extremely ill by that point. (Constant coughing, difficulty catching my breath, painfully itchy skin, drenching night sweats, weight loss, and exhaustion: I later learned that, taken together, my symptoms were highly suggestive of Hodgkin’s lymphoma.) During my biopsy, the surgical team also found that one of my lungs had collapsed from the cancer. And then my chemotherapy began—and I felt even worse. This was back in the 1980s, well before the effective antiemetic drugs we have today. Every other Friday for more than 8 months, I received my chemotherapy, was brutally sick for hours (and hours), slowly regained my strength over the next 2 weeks, and then started the same cycle all over again. With each treatment, my exhaustion worsened, and as time went on, my red and white blood cells had more and more difficulty bouncing back. The entire experience was absolutely horrific.

But dealing with my health insurance company? That proved even worse. Shortly after graduating from college, I started a new job at a local newspaper—a job that I quickly grew to dislike. However, since this was my first “real job” as an adult, I thought it was important to stay and give it more of a chance—despite the devil on my shoulder that kept whispering, “Quit this lousy job. Quit, quit, quit! What are you waiting for?” Fortunately, I didn’t listen to this temptation—because I soon desperately needed the health insurance that I received as a job benefit, being diagnosed just a few months after starting with the newspaper.

As I struggled to come to terms with my diagnosis, I took comfort from the fact that I had this insurance, thinking that I didn’t need to worry so much about the costs of my treatment. But I was quickly, rudely shaken out of my naiveté. One of my first memories of chemotherapy was stepping out of my infusion room, walking by my oncologist’s office, and being unable to ignore the phone conversation he was having. My oncologist was a gentle soul: a highly religious, warm, compassionate man who was loved by his patients. I cannot imagine surviving the rigors of treatment without his care and ongoing support. But on that day, I saw a side of him that I hadn’t previously witnessed. He was talking with one of his patient’s insurance companies and his voice was growing louder and louder until he seemed nearly frantic. It became clear that he was calling on behalf of a critically ill patient, whose insurance company had improperly, repeatedly refused to cover the cost of one of his chemotherapy drugs.

As my doctor repeatedly explained, this drug was an absolutely critical part of his patient’s treatment, it was considered standard-of-care for this type of cancer, the company had always paid for the entire regimen in the past, and their refusal today was unacceptably delaying treatment that his patient desperately needed. This gentle man’s voice continued to increase in volume until he was nearly shouting into the phone. He then went completely silent, took a deep breath, and concluded with words to the effect, “You are absolutely, dangerously wrong. You WILL pay for this for my patient. I WILL continue treating him with this medically necessary drug. And you WILL make this ridiculous problem go away.” He slammed down the phone and immediately sank his head into his hands. I looked up at the receptionist, and I obviously appeared extremely concerned, because she immediately reassured me. She explained that the doctor would be okay, that the only time anyone ever saw him become upset was when he had to deal with “some of the worst insurance companies,” and that, most importantly, his patient WOULD continue receiving the treatments he needed.

In just a few months, I knew exactly how my doctor had felt in that moment—because I was the one who was slamming the phone down, again and again and again. I was now the patient for whom an insurance company was consistently initially denying payment for cancer treatments. So, just as with my chemotherapy, I’d entered into a vicious cycle where my insurance company was the toxic agent.

It always went the same way: I would have the distinct pleasure of calling the insurance company to explain that they had (once again) made a mistake, that all my chemotherapy drugs were covered, and that they had improperly denied payment. I would then be transferred at least 2 or 3 times, with each transfer requiring that I launch into the same explanation all over again. The bulk of these calls consisted of my waiting on hold for yet another person, anxiously peering at the clock every few minutes, then every few seconds. I always called when the lines opened first thing in the morning, in an ineffective effort to avoid lengthy hold times, since I was doing my best to work through my treatment. The irony was never lost on me that my (insert expletive here) insurance company was again making me late for a job I strongly disliked—yet one I had to keep in order to continue having this coverage and to stay with an insurance company that fought against paying for my treatments…every…single…step…of the way.

After experiencing this same scenario half a dozen times, my hands started to visibly shake every time I received a piece of mail from my insurance company—because it would inevitably be another denial and I’d need to start my insurance battle cycle all over again. As noted above, I was exhausted, usually felt terrible, and was trying to put in as many hours at work as I could. Adding to that the constant stress of the continued denials, the enormous loss of time fighting for rightful payment, the fear that I could lose the little money that I had if they never did make these payments…all of this was taking a heavy toll. And then, once again, it became even worse.

It began the same way that it always did. My insurance company—which had repeatedly denied and then finally paid for the same chemotherapy drugs cycle and after cycle—was saying once again that these very same drugs were not covered. On this morning, I had been on hold for nearly an hour and a half, listening to the same cycle of music over and over, waiting for someone, anyone, to take my call. Finally, a woman came on the line and I launched into an explanation of my issue. I’d managed to speak just a few words, when she began to interrupt me. I’d try again and she’d interrupt me again. Out of desperation, I finally said, “I’m sorry, but it’s my turn to speak now” and she interrupted me again. But this time, she was interrupting me to say that there “was nothing she could do.” I pushed back and said that “of course there was!,” emphasizing that this had happened with every single cycle of my chemo and that they always ultimately paid.

Interrupting yet again, she said that if I “wouldn’t listen to her,” she would just have to transfer me to someone else. As I rushed to say, “Please do NOT put me back on hold again…,” she did just that: she transferred me. Once again, I was back in purgatory hold, right where I’d started, listening to the same cycle of music. The clock continued its ceaseless ticking, my head began to throb, and my hands wouldn’t stop shaking, as I remained tethered to the phone for another 20 minutes. And it was then that the unthinkable happened: I was disconnected! I stared at the phone in disbelief. I stood there in shock for several seconds—and then very methodically began to slam the phone’s receiver onto the body of the phone over and over again, as hard as I could. The tears started streaming and I started screaming, “No, no, noooo!!!” My parents came running and watched while I fell completely apart. I was screaming over and over that they’d hung up on me, that I couldn’t take it anymore, and that I was done.

It was one of the few times that I completely lost control after my diagnosis, and it was because of what was a faceless entity to me—an amorphous “insurance” company that insured absolutely nothing, yet had such a hold on me because of my fear of losing everything I had because of their actions (or inactions) and the reality that their decisions could literally alter the course or even, in some cases, the length of one’s life.

And then my father, with righteous anger, took matters into his own hands. I’ll never know how he did it, but he managed to get a member of upper management on the line almost immediately. And he promptly, loudly, and heroically gave them a piece of his mind. I remember him saying something along the lines of, “My daughter is extremely ill. You know this because of the types of drugs you’re supposed to be paying for. Every 2 weeks, she has to go through grueling chemotherapy, and every 2 weeks, she has to go through a grueling battle with you to get you to do your jobs and pay for her treatment appropriately. I swear that you’re doing this on purpose: you immediately deny all claims, hoping that most people won’t be patient enough to stay on hold for hours, repeat their stories 6 times, and have to deal with your extremely rude and callous employees. You hope that they’ll just give up and pay it themselves rather than going through this type of torture. But my daughter is a young woman, with a bright future, and she cannot afford to pay for these extremely expensive chemotherapy drugs, NOR should she have to do so. After all, that’s why she has your insurance! She will NOT go into bankruptcy making payments for which you are responsible. You WILL pay for this claim and for all the rest of her treatments, and you will NEVER put her through this again. Dealing with you people has been more painful for her than her chemotherapy.”

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  
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