The High Cost of Cancer Treatment

It wasn’t much of a life, but she took pride in meeting her obligations. Her scans were clean on her five-year cancer-versary, so she figured there was no way the disease would come back.

Well, probably not.

A toxic side of cancer treatment

Yousuf Zafar, M.D., doesn’t remember who on his cancer research team at Duke University coined the term “financial toxicity.” With terrifying accuracy, it describes the dire health impact of the soaring costs of cancer treatment. Zafar only knows that once the team began using those words, they quickly spread through oncology circles. It was a diagnostic term whose time had come.

“My initial reaction was that cost is not my problem,” Zafar admits. “We hadn’t focused on how the costs of cancer treatment were impacting patients’ well-being and the quality of their care.”

Patients were afraid that if they discussed their financial fears with their doctors, it would compromise their treatment. But oblivious doctors wouldn’t know that their patients might take their pills less often than prescribed. And those patients might choose to avoid follow-up therapies or tests.

“Why isn’t this treatment working as well as it should?” a physician might wonder. And the answer might be that the patient can’t afford to follow it and is lying about compliance.

If someone’s home life or finances are in disarray, a cure may be delayed or impossible. To address that, insurance and health care company Kaiser Permanente has adopted a “level of distress” questionnaire to help caregivers explore 37 possible stressors for patients, including “spiritual/religious concerns” and “sexuality/fertility.” Appropriately, the first eight items raise concerns such as housing, bills, employment and other money issues.

An oncology social worker like Dennis Heffern, of Kaiser Permanente Franklin Medical Offices in Denver, will ask as many times as necessary to get genuine answers from patients assigned to him.

Heffern describes a typical interaction: “The social worker says, ‘How can I help you?’ And the patient usually says, ‘Well, if you really want to help me, show me the money.’ People are thinking, They’re not going to let me in the front door unless I can pay. They’re going to withhold my cancer treatment. And so the social worker, in a very patient-centered way, says, ‘OK, let’s look at resources.’ ” And there are resources available: prescription discounts, charitable grants, coverage for life and travel expenses, and a tangle of government programs.

Sarah Kelly is a licensed clinical social worker for the support group CancerCare, which fields 250 to 300 calls a day to its hotline in New York City. She cites two comments she often hears from patients: “I don’t want to bankrupt my family,” and, heartbreakingly, “I can’t afford to live.”

An unfortunate kind of expertise

It’s common for cancer patients to experience depression for years after they “beat” the disease.

At one point, after her first bout with cancer, Sleight contemplated suicide. I’m depressed, I’m fat, I’m broke, and I’m in my 30s, she recalls thinking. “Not a great place to be.” But she didn’t act on her dark impulse, ultimately because she had started volunteer teaching in a program that helps people quit smoking (a habit she started at age 14). “I thought, I have another class coming up. Who’s going to help these people if I don’t?” She got a master’s degree in health psychology and attended a smoking-cessation training program at the Mayo Clinic.

She pulled herself out of despair and into a solid consulting gig, presenting quit-smoking programs for corporate clients. So the destructive habit that nearly killed Sleight ultimately saved her.

The pieces of her life began to fit back together after she turned 40. Having stared death in the face, Sleight asked herself, What is really going to make me happy in the time I have left? She came up with answers: a better job in the mortgage industry, a real estate portfolio to deliver rental income, helping people quit the cancer habit, travel.

Her health woes had carried her past childbearing age, but she was OK with that. Life offered other rewards — and surprises, too.

With her medical team on the lookout for a recurrence, Sleight lived through “scan-xiety,” sweating out each round of scans and biopsies. It was expensive and uncomfortable — an inevitable part of the cancer survivor “lifestyle.” But by age 55, she had been through enough to feel a little superior to the doctors who prescribed the tests. So in August 2010, when a mammogram showed a shadow, Sleight reacted in anger. “I thought, Son of a bitch! You got a new radiation guy and he doesn’t know what he’s looking at! It’s just a scar from my last cancer!” But after 23 years, the cancer was back. Even so, Sleight wasn’t devastated. “I’d been through this before. I knew the drill.”

This time she opted for a double mastectomy and reconstructive surgery. “I didn’t want to go through cancer a third time,” she explains. Her first cancer treatment cost about $40,000. Two decades later, the bill was $120,000. Again, she was covered by insurance. But her copays and premiums added up to $25,000 at a time when she couldn’t work. Not included in those costs: lost wages, travel to and from surgery, forfeited revenue from real estate investments she lost to foreclosure, and the incalculable human cost of more suffering.

And all this happened to a woman with insurance and the financial savvy that comes with operating her own businesses. If Sleight found herself in a hole, what chance do the rest of us have if a scan goes sideways?

They don't know what they don't know

The staff at Seattle’s Fred Hutchinson Cancer Center would rather focus on health than economics. Increasingly, though, those matters have become the same thing. Lyman says he’s “first and foremost an oncologist,” but he has grown “deeply concerned about the barriers and impact of cost on the patients with cancer and on the health care system.” Unfortunately, he points out, he works in a growth industry: “Virtually every one of us will be impacted individually—or in our family, or one of our close friends—by cancer.”

And the growth-industry label applies to the cost of treatment, too. Says Lyman: “Recent studies we’ve done have shown high rates of bankruptcy among patients with cancer. And this has escalated over the past decade, as some of the exciting new agents that have come along have just skyrocketed.” Indeed, despite the financial hurdles, most patients are not suddenly opting to forgo costly treatments. If anything, it’s quite the opposite. “There’s something about the c-word that’s galvanizing,” says Heffern, the social worker in Denver. “They say, ‘Jimmy Carter got immunotherapy and it helped his malignant metastatic melanoma. Why can’t I have that for my cancer?’ ”

One study noted that “novel cancer therapy agents can cost more than $60,000 a month for treatment. And the average monthly cost per agent has more than doubled in the past decade, to $10,000.” Blood cancer patients, for instance, are treated regularly with an intravenous bag of a drug called Rituxan, which can cost up to $5,000; it’s like dripping gold into a person’s veins.

And here’s another “problem”: These expensive drugs and therapies tend to work, so people survive.

“We’re the victims of our own success,” says Heffern. People who “beat” cancer often face a whole new round of expenses if it returns, and the costs of treatment can double or triple from one diagnosis to the next. Enter the need for a medical-financial adviser. But like a medical scan that’s fuzzy or inconclusive, so is the picture of a patient’s ability to pay for the most promising treatment.

Sometimes having high income — or life savings — can be the last thing a person wants when the cancer diagnosis comes. At the time of her first cancer, Sleight had a $5,000 CD, a sign of solvency that effectively blocked her access to many services she desperately needed.

Dan Sherman launched a pilot program in financial navigation at Mercy Health St. Mary’s Hospital in Grand Rapids, Mich., that tweaked the health insurance plans for 675 patients. He made sure they were on supportive plans, signed up for government assistance and tapped available drug-cost-abatement programs. His team reduced participants’ financial responsibilities by almost $12 million and saved the hospital charitable outlays and bad debts by almost $7.5 million. There were also considerable savings on the human-suffering side of the ledger.

So aren’t hospitals lining up to implement financial-counseling programs with Sherman’s NaVectis Group? “They’re not,” he says. “It’s hard to convince hospitals that there is a void in this service.” A lot of them already employ financial navigators, but their staff are undertrained for the job. “The majority have a high school diploma,” he notes. “And those individuals are cheap, right? But they don’t know what they don’t know.”

Lessons from the second time around

VJ Sleight had been down the hard road of cancer treatment before. So she chose a different path the second time around.

“I played the cancer card this time,” she says. Like a lot of other people in their 50s, she was stranded in a coverage gap — too young for Medicare, too affluent for Medicaid. So she stopped paying her bills. She defaulted on her real estate holdings. She cut back in every way possible. She drove her old car into the ground. No trips to the hairdresser, no travel, no new clothes.

She also decided to max out on personal support.

That’s how she found her way to Gilda’s Club in Cathedral City, Calif. The organization was named for former Saturday Night Live star Gilda Radner, who died from ovarian cancer in 1989. Founded in 1995, the club provides a community of people who accept the rage, the depression and the day-to-day hopes of cancer patients. “I had so many poignant moments with people at the end of their lives,” Sleight says. “I felt so privileged.”

Sleight is seven years out from her most recent financial crash and notes that her credit report will soon be clean. She can see financial daylight ahead. She lives with mountain views all around, in a house filled with mementos of her travels to six continents and 30 countries (between bouts of cancer). She has a roster of friends made while battling disease. And her double mastectomy means that she is likely done with breast cancer.

She refused chemo the second time around, partly for financial reasons. But that decision resonated with her emotionally and philosophically as well. “Through it all, you do a lot of thinking about the meaning of life and death.”

Asked a question about her case, Sleight leaves the room for a moment and returns with a thick binder containing every medical image, every blood test, every diagnostic report from her long, difficult history as a patient. She’s the Leo Tolstoy of medical records. “I’ve learned that you have to be super organized. You have to be your own advocate,” she says. She pats her thick medical scrapbook: “Doctors see this and they respect me.”

Peter Moore, the former editor of Men’s Health, is a freelance writer who lives in Fort Collins, Colo.