Cancer Survivors, Caregivers, Advocates Share Experiences With Financial Toxicity

In a panel discussion during the Business of Oncology Summit hosted by the Florida Society of Clinical Oncology, survivors and caregivers described how their cancer journeys were affected by financial toxicity.

Fumiko Chino, MD, a cancer researcher at Duke Radiation Oncology, began the panel by giving a brief overview of financial toxicity, a side effect of cancer treatment that has garnered attention in published commentaries and the lay press. Then, she announced a disclosure—she personally had experienced it as a young widow burdened with exorbitant medical bills after her husband died of cancer, which led to her starting medical school to study the issue.

Financial toxicity has measurable impacts on quality of life and satisfaction with care, Chino said, with data showing an increased risk of medication nonadherence due to financial toxicity, a 2.65 times higher risk of bankruptcy with a cancer diagnosis, and a 79% higher risk of mortality with a cancer-related bankruptcy. Aside from these measurable effects, there’s also an intangible burden.

“The stress and overwhelming crushing defeat of these bills that would come in every week—it had an effect on our quality of life,” Chino said. “It forced us to make difficult decisions about his care.”

Panelist Beth Fisher, who calls herself a “cancer warrior,” shared her harrowing tale of receiving a multiple myeloma diagnosis while uninsured, her struggle to find a cancer center that would accept an uninsured patient, and her “extremely frustrating” experience of being rejected twice by Medicaid before applying in person. More than 6 years later, her medical bills—for radiation, 21 days of chemotherapy per month, quarterly infusion treatments, and any complications—cost her about $2000 out of pocket per month despite her Medicaid coverage.

Fisher gave her own example of making difficult decisions about her care: While she routinely takes the medications she needs to stay alive, she does not fill prescriptions that would improve her comfort and quality of life, like pain or sleep medications, which she called “luxury items.”

Another panelist, April Thompson, shared her experiences as a caregiver for her husband, who has neck and mouth cancer. On top of the shock of the cancer diagnosis and the pain of seeing him no longer able to eat normally, their insurance did not pay for the liquid diet he now needed, and they had to pay for it out of pocket. Thompson had to quit her job to care for her husband, which further worsened their financial situation. She credited the strong support system of her church, family, and friends for helping them pull through, but she still gets frustrated by medical costs she sees as too high—for instance, the $7 roll of tape used to secure her husband’s stomach tube.

The experience of panelist Cat Somerville provided a sharp contrast illustrating the role of circumstance in determining one’s level of financial burden. When Somerville was diagnosed with breast cancer in 2006 and again in 2012, her generous insurance plan and leave policy through her large employer covered her treatment and paid her full salary plus commission for months, allowing her to focus on her recovery without worrying about money. By 2016, when doctors found 2 small lesions they treated with radiation, she was in the process of retiring and switching to Medicare. She was shocked to find out that Medicare would not cover the palbociclib she had been taking, but charities ended up paying for the drug, so the cancer did not significantly impact her finances.

Somerville said she was lucky that her employer provided a good healthcare plan, but she recognized that not everyone is so fortunate. “I just think it’s unfair,” she said. “Really, you’re at the mercy of your employer’s person who picks your healthcare.”

Providing a different perspective on the problem was Christy Banach, director of patient financial services at Florida Cancer Specialists, who leads a team of financial counselors who educate patients on their benefits and prepare them for the costs of their treatment. Although that message is not always received well by individuals going through the trauma of illness, Banach said it would “disservice our patients if we did not educate them.” Instead, by providing greater knowledge, the counselors can help patients explore solutions like co-payment cards, charitable foundations, or payment plans.

It can be hard for clinics to allocate the time and resources to help patients understand their financial options, but Banach sees it as essential for allowing patients to focus more on their care and getting well instead of the financial burden of their illness.

To wrap up, Chino asked the panelists to name one thing they would improve to make a difference in the patient experience.

Fisher suggested reducing turnover in treatment centers so that patients can have the consistency and comfort of seeing the same face at their appointments. “Of all the millions of doctors I’ve been to through this, it would be nice to see the same people occasionally,” she said.

Somerville highlighted the importance of education and the need for oncologists to encourage patients to seek out support groups and resources. In her circle of fellow breast cancer survivors, the women each have positive and negative stories on navigating the healthcare system and want to share their knowledge to help others.

According to Thompson, employers should be willing to sit down and discuss healthcare with their employees to help them decide what kind of insurance is best for their situation.

Based on Banach’s experience, she suggested making sure everyone in the clinic office—including nurses, medical assistants, and front-desk staff—knows which resources are available for patients when the costs of care come up in a conversation, since patients may have more trust in them than in the financial counselor.

Chino agreed with the importance of making everyone on the care team familiar with the concept of financial toxicity. “As a provider, I feel uncomfortable talking about cost, but I also know that if we don’t talk about cost that it can be catastrophic for our patients,” she said.