The cost of cancer can be measured not only in the physical toll it takes on patients’ bodies or the emotional hardship they endure, but also in the financial burden of keeping up with the cost of care.
Aurora Health Care Inc. is participating in a clinical trial focused not on the treatment of the disease, but rather on the study of “financial toxicity” – the condition patients find themselves in when facing the adverse financial effects of cancer treatment. The goal of the study is to gauge how often over a 12-month period a group of patients who are diagnosed with metastatic colorectal cancer experience financial hardship because of their cancer treatment.
For some, the prospect of financial harm causes them to refuse treatment for their disease altogether.
“We’ve noticed that older people who get treatment for cancer, particularly very advanced cancers, end up having a lot of financial toxicity,” said Dr. Federico Sanchez, medical director for oncology services at Aurora Cancer Care and the principal investigator for Aurora Research Institute. “Many of them go bankrupt from the treatment because there aren’t enough support systems built into our country.”
To gather a full financial picture, researchers are taking a comprehensive look at participants’ financial status, including their income, assets, debt, employment status, health insurance coverage and quality of life. Participants complete questionnaires each time they report for treatment regarding their financial status and how cancer has affected it. Can they afford to take their children to the movies? Has their spouse had to take on extra work? Have they declared bankruptcy?
While similar financial burdens are associated with all types of cancer, the study is focused on colorectal cancer because patients are often diagnosed around the age of 50 – a population group largely comprised of working professionals. Sanchez said the financial burden of cancer is particularly felt among this age group, as the condition precludes many patients’ ability to work while undergoing treatment.
“People can’t work with chemotherapy every week,” he said. “If you can’t work, you can’t produce. And if your family relies on you, you’re in trouble.”
“For a family of three making the average income of $55,000 with employer-related insurance, most insurances now have a deductible between $4,000 to $6,000,” Sanchez added. “That’s 10 percent of your yearly income. If you get metastatic colorectal cancer, it’s about $16,000 a month for treatment. So you have to get payment plans and you’re not working and, with that, you can’t make your mortgage or car payments. What do you do? That’s financial toxicity.”
It’s the first such federally-sponsored trial of its kind. The goal is to gather data from 275 to 400 patients nationwide. Ultimately, data collected from Aurora and other participating partners could leverage change at the federal level, Sanchez said.
According to American Cancer Society data, average out-of-pocket costs for a patient diagnosed with stage II colorectal cancer who is covered on employer-sponsored insurance is $5,748. That’s compared to $10,114 for a patient on an individual plan and $8,573 for a patient covered by Medicare.
Even with insurance, cancer patients often face unpredictable costs, including high co-insurance or deductibles, having to seek out-of-network care, and needing treatment that’s not covered by their plan, according to the ACS.
“You never anticipate that you need to save up for a potential cancer diagnosis,” said Laurie Bertrand, executive director in Wisconsin of the American Cancer Society. “It’s clear that having insurance is critical if you’re diagnosed with cancer. And even with insurance, cancer patients often face unpredictability or unmanageable costs depending on what their policies cover. I know personally, watching a family member go through treatment, seeing those bills stack up and add up was just astonishing to see.”
Gary Grunau, a Milwaukee real estate developer who is currently battling brain cancer, has observed firsthand the rising cost of cancer treatment. Fifteen years ago, he was diagnosed with prostate cancer, which he ultimately beat.
“When I had prostate cancer, I had no problems with the cost of drugs,” he said. “But now, as drugs get more and more sophisticated, they’re getting more expensive.”
Grunau, who is covered under Medicare and a supplemental insurance plan, said the burden of cancer costs often falls on those who don’t have adequate insurance coverage to begin with.
“There is always a hesitancy to spend money (on insurance) because you don’t know if you will need it,” he said. “You don’t want to buy it because you don’t think you will need it and when you need it, you can’t afford it … But I’ve lived a long life and I’ve had medical problems and I’ve found if you listen to your doctor and take care yourself, a lot of it will clear up. And sometimes you have to spend money you don’t think is necessary.”
Oncology social workers at Aurora Health Care in recent years have added financial counseling to their array of patient services, responding to an increased demand for that type of care.
“Over the years, more and more patients have come to us with their primary concerns being financial in nature,” said Brad Zimmerman, oncology social worker for Aurora Health Care. “It’s often the result of a number of different factors – the potential loss of employment as a result of the cancer diagnosis, the insurance aspect of it, deductibles and out-of-pocket costs, the cost of care itself. Many of the treatments can be costly and take their financial toll on folks.”
Zimmerman said social workers will take a holistic look at patients’ financial status and help them find better footing. It could look like helping patients find better insurance coverage, securing lower-cost medications through national foundations and pharmaceutical manufacturers, or working with them on their employment options.
Zimmerman said he is glad to see more research conducted around financial toxicity.
“It’s another potential side effect of cancer,” he said. “Not only should we be treating patients for their physical needs, but also the financial piece because that impacts their decisions surrounding whether they could continue to afford to pursue care. It’s quite an exciting time right now because, as this type of concept is becoming more recognizable, there’s more that’s being done about it.