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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.
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.”

Copyright AJMC 2006-2018 Clinical Care Targeted Communications Group, LLC. All Rights Reserved.
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