University of Minnesota study reveals high costs, red tape facing cancer survivors

Few people understand the costs and complexities of cancer better than Helen Parsons, a cancer survivorship researcher at the University of Minnesota. Yet she felt overwhelmed recently when seeking a walker for her father, who lost mobility after suffering brain cancer.

Parsons encountered confounding forms, followed by requests to send them by fax, followed by requests to resend them when they got misplaced or weren’t filled out properly. She eventually discovered it might take months to approve the walker her father needed immediately.

“It was just really frustrating, because I’m a health policy expert. I feel like I should be able to navigate this,” she said. “That was just not the case.”

Parsons is part of a U research group that is studying the “toxic” financial costs and administrative hassles for cancer survivors, especially when it comes to medical equipment such as walkers and oxygen tanks that are poorly covered by insurance but increasingly needed for an aging population.

Their first discovery was published late last month in JAMA Open Network, an online scientific journal, when they showed that survivors are paying 40% of the costs of cancer-related medical supplies out of their own pockets. In comparison, insurance coverage was much better for prescriptions drugs and hospital stays.

Patients were only spending a couple hundred dollars per year on average on medical equipment necessitated by their cancers, but that need will increase as the population ages, said Arjun Gupta, a U researcher who led the study. Insurance also creates more barriers before it will pay for equipment such as walkers, so he said he suspects that many people just give in and live with physical limitations.

“It’s easier for me to prescribe a $100,000 immunotherapy drug than it is to get a cane or a wheelchair,” he said.

Some barriers have emerged as public and private payers have tried to reduce fraudulent requests or overpayments for medical equipment. But they often delay approval of legitimate requests for equipment that patients urgently need.

Parson’s father couldn’t afford to wait for insurance coverage. Instead, her family found a used walker on social media, paid full price with Venmo, and picked it up the same day. She suspects a lot of transactions are happening like that outside the medical system.

“There’s a real underappreciation for all of these other costs,” Parsons said. “They really build up.”

The burden rang familiar to cancer patients and their families who gathered at the Minnesota State Capitol on Tuesday and lobbied lawmakers to help them deal with the crushing burden of medical debt.

Jenn Schultz of St. Paul said she has two plastic shopping bags full of medical bills resulting from treatments of four skin cancer episodes over the past decade. Her doctor appealed unsuccessfully for insurance coverage of an annual “mole mapping” scan to see if new cancers have emerged, but the request was denied, so Schultz pays for the preventive scan out of pocket as well.

“When cancer ends, the treatment doesn’t. We have scans, biopsies, ongoing treatments for side effects and those all add up and continue on and on,” said Schultz, a local advocate for the American Cancer Society’s lobbying arm.

The concept of “financial toxicity” for cancer patients has become an increasing topic of research. Treatment in the first year alone costs more than $43,000 for the average cancer patient, according to the National Cancer Institute, when combining expenses paid by insurers and patients.

Treatment includes surgeries to remove tumors and chemotherapy drugs and radiation treatments to shrink or eliminate them. But the post-treatment phase comes with costs as well, Gupta said.

Some patients need supplemental oxygen because of lingering lung damage from their cancers in order to maintain active and social lives, he said. If insurance doesn’t help pay for it, they often do without and stay home.

The next phase of the U’s study involves “secret shopper” research. Gupta’s team received ethics approval from a university institutional review board to pretend to be cancer patients in search of medical supplies and see what administrative and cost barriers emerge.

Parsons said her role in the research is inspired by her father, who died two years ago at 64. The Welsh-born small business owner deteriorated rapidly after he was injured in a car accident that was related to his brain cancer, she said. Every time his needs changed, she said, the family faced new battles for insurance coverage.

“We just got to frustrated,” she said. “There has to be an easier way.”