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Many women living with advanced breast cancer face significant financial strains — from paying for their care to simply covering monthly bills, a new survey finds. Researchers found that of the more than 1,000 women they surveyed, nearly 70 percent said they were worried about the financial fallout related to their cancer. Many said they’d refused or delayed treatments, failed to pay non-medical bills, or been contacted by collection agencies.
It all amounts to a “financial toxicity,” experts said, that could take a toll on patients’ mental and physical well-being. The costs of cancer go well beyond paying for medical care, said lead researcher Stephanie Wheeler, an associate professor of health policy and management at the University of North Carolina, Chapel Hill.
Patients may have to travel long distances to their cancer center, pay for lodging or arrange for child care or care for elderly parents — to name just a few expenses. So, having health insurance is no guaranteed protection, Wheeler said.
In fact, the study found, breast cancer patients with health insurance actually reported more distress over their financial situation, versus those who were uninsured. It’s a surprising finding, Wheeler said. But she speculated on some potential explanations: For one, women with insurance may have been taken off-guard by high out-of-pocket expenses. And some may have had to spend down assets they’d built over years — which can be “very distressing,” Wheeler pointed out.
Caitlin Donovan is a spokesperson for the Patient Advocate Foundation, a nonprofit that offers financial assistance and other services to people with serious chronic diseases. It was no surprise to her that many women in this study faced financial woes.
“To us, there’s no difference between the ‘direct’ and ‘indirect’ costs of medical care,” Donovan said. “We’ve found that one of the biggest [financial] concerns people have is transportation.”
If you live far from your treatment center, the cost of gas alone can be daunting, Donovan noted.
And even if you live in a city and take the subway, she added, there’s the time off from work — whether it’s for the patient or family member — and possibly additional expenses like child care.
The strain of dealing with all of that can take a toll on patients, both emotionally and physically, Donovan said.
“That’s why they call it financial toxicity,” she said. “It affects the ‘whole’ person.”
The findings are based on 1,054 U.S. women with metastatic breast cancer — which means the disease has spread to distant sites in the body, like the bones or brain. Close to half had been living with it for one to two years, while around one-quarter were at the two- to five-year mark.
Overall, the study found, nearly 70 percent of the patients said they were worried about financial problems related to their cancer.
Many women — 35 percent — lacked health insurance, and nearly all of those women said they had delayed or refused a treatment. That was true for 41 percent of insured women, the findings showed.
It’s not clear what type of care the women put off, or when, Wheeler noted.
“But it’s absolutely concerning,” she said.
In addition, about three-quarters of uninsured women said they’d been contacted by a collections agency, while 40 percent had skipped paying non-medical bills.
Insured patients also reported those problems, albeit at lower rates. And when it came to the emotional strain from financial worries, they tended to be faring worse than uninsured women.
It’s a striking finding, Donovan said. And she agreed that insured patients may be less prepared, mentally, for the financial toll.
“Anecdotally,” Donovan said, “patients are often surprised by what their insurance plan doesn’t cover.”
The picture is not all bleak, Wheeler stressed. “The good news,” she said, “is that there are financial resources — at hospitals, in the community, and even from industry.”
She cited the Patient Advocate Foundation as one national group. She suggested, though, that patients “start at the place where they’re receiving care.”
Large cancer centers will generally have more financial assistance programs, Wheeler noted. But smaller hospitals usually have resources, too — such as social workers who can help families navigate the financial side of care.
Wheeler did, however, point to a shortcoming: “Many of the resources that exist are limited to uninsured patients. And clearly, patients with insurance need help, too.”
Donovan agreed, and said the “disjointed” nature of the U.S. health care system sets up roadblocks. Many patients either have difficulty accessing the financial services that are out there — or are not aware of them at all, she added