Financial distress puts a major burden on patients with cancer and their families. And while there are numerous resources that nurses can share with their patients to help with co-pays and other money-related issues, they are not widely discussed, explained Ellen Miller Sonet, MBA, JD.
Sonet is the chief strategy and policy officer at CancerCare, and recently discussed financial toxicity at the CURE Patient-Focused Sessions during the 2019 Miami Breast Cancer Conference.
“The good news is that there are lots of resources that patients and families can take advantage of,” she said. “Very often, though, this information is not widely shared, and it’s not known by patients or clinicians.”
This lack of knowledge exists despite the American Society of Clinical Oncology’s (ASCO) 2009 Guidance Statement saying that ASCO “affirms the crucial role of oncologists in addressing the cost of care with their patients.”
CancerCare conducted a large, national study about whether or not patients had enough information about financial and psychosocial support. Only about 30% reported that they had enough information and resources when it came to finances.
“Talking about cost needs to be acknowledged, and ignoring it is no longer an option,” Sonet said. “Historically, nobody wanted to talk about cost, and nobody knew anything about cost. It wasn’t talked about, and we now have the after-effects of that, which can be pretty dramatic.”
Not only can out-of-pocket medical expenses be burdensome to a family, but they can also come with great an emotional toll, and potentially depression or anxiety. Additionally, patients or their caregivers might experience job loss as a result of their diagnosis. Family roles can also be shifted, impacting a person’s sense of self and worth.
The high costs of cancer does not only stem from prescription drug prices, either. Patients and their families must also consider travel expenses to and from treatment; additional childcare or services from a lawyer or accountant. Last year, CancerCare gave out millions of dollars in $300 transportation grants, Sonet said.
“If you can’t pay your bills, you feel pretty badly about yourself. It’s an awful strain on relationships and the number one issue that families fight about,” Sonet said. “There’s a real compromised sense of safety and stability. People say to me all the time, ‘Life has just never been the same.’”
However, there are many programs that can help patients struggling with their finances. For example, there are co-pay and patient assistance programs, government programs, hospital assistance, advocacy organizations such as CancerCare, and community support that individuals can look to.
“These resources are available, we just need to figure out how to get [patients] to them,” Sonet said.