By Heather Perkins (she/her), Deputy Director
A cancer diagnosis changes everything as it shifts emotional, mental, physical, spiritual, and financial landscapes.
We know the current healthcare system in this country is broken. Its structure disrupts people’s value systems and quality of life (QOL) alignments because it lacks comprehensive, compassionate, accessible, and affordable options that should be presented to people living with breast cancer.
Addressing financial toxicity is an essential step towards achieving health justice. Fumiko Chino, MD, assistant attending radiation oncologist at Memorial Sloan Kettering (MSK) Cancer Center (New York, NY) and co-lead of the Affordability Working Group, addressed the ramifications of financial toxicity within the breast cancer industry during the “Living with Metastatic Breast Cancer” session at this year’s San Antonio Breast Cancer Symposium (SABCS).
As the watchdog of the breast cancer industry, Breast Cancer Action will continue to give voice and take action towards reducing and stopping financial toxicity, demanding people over profits now. I was glad to see this topic taken seriously at a session aimed at the leaders within the medical industrial complex. The following are the highlights of the discussion, revealing just how far the reach of financial toxicity extends.
“Costs are an adverse effect of treatment just like any other adverse effect, with slightly more patients worried about the financial impact of their cancer diagnosis than they are about actually dying from their disease,” Dr. Chino noted.
Dr. Chino addressed not only the financial reverberations following diagnosis and treatment, but the emotional repercussions as well.
“Although we would never start someone on a chemotherapy regimen without warning them of the risk that they may lose their hair or they may have painful neuropathy, we’re routinely committing our patients to potentially financially toxic regimens without really giving them significant warning about that. Patients get this; they understand that care is unaffordable, because it’s been unaffordable—for themselves, for their family members, for their coworkers, for their loved ones, for their neighbors.”
She underscored this with a startling fact: Slightly more patients worry about the financial impact of their cancer diagnosis (57%) than they do dying from their disease (54%). In addition, according to data from the American Society of Clinical Oncology’s 2018 National Cancer Opinion Survey, caregivers are also affected. Of those respondents, 61% indicated they or a loved one had to work extra hours (23%) or a second job (13%), postponed their retirement (14%), or used their savings (35%) just to pay for their cancer care.
“Cancer is messy,” Dr. Chino stated.
Advanced disease, quality of life, financial distress, and lower perceived quality of care are all factors that are interrelated in the cancer space. Patients with advanced disease have a 25% greater risk of reporting financial distress and are 19% less likely to report receipt of high-quality care. Financial distress decreases both quality of life and the patient’s perception of the quality of their care.
Comparing outcomes between patients who have no financial burden or a low financial burden with those who have a high financial burden only drives this point home even more, in that there is an overall decreased satisfaction with care in general, as well as with the financial aspects and technical quality of that care among the latter. She emphasized the technical quality of care aspect, noting there is “an erosion of trust stemming from cancer-related issues.”
“We can erode people’s trust with their diagnosis or their treatment when their costs are too high,” Dr. Chino stated. “We know that there’s an erosion in the quality of care based on affordability.” For example, even though medication no adherence can immediately compromise the efficacy of patient treatment regimens, patients have been known to not fill a prescription due to its cost, to skip doses to make their medications last longer, and to skip, take less of, or not even fill their chemotherapy prescriptions, she highlighted. On the flip side of this is evidence showing that some patients go into debt just to afford their cancer treatment or burn through their savings just to stay adherent. [For more on this, also see “Put The Right Incentives in Place to Encourage Drug Adherence,” also from this year’s SABCS analysis.)
Financial struggles grow over the course of treatment and are often accompanied by increased personal and family burdens—having to make sacrifices, spending less on such basics as food or clothing, or not being able to pay bills—as well as being at higher risk of bankruptcy and mortality. Financial toxicity drives disparities. In what she termed the “winding road to health,” Dr. Chino discussed the barriers that continually arise throughout the care cascade. Our healthcare system lacks social support services, affordable and safe housing, and access to reliable transportation, family care for aging parents, children, and/or self, and ability to gain translation services for patients. These failures on the part of the system effect care, treatments and outcomes for people living with breast cancer, their families, and caregivers.
Another disproportionate burden: Black and Brown people are more likely to report a worsened financial situation following a cancer diagnosis that includes healthcare-related financial and transportation barriers and loss of health insurance. Compared with white patients, Black and Brown patients have also been shown to be more likely to be denied insurance and to be hurt financially. In addition, people becoming unhoused has become an insidious issue in the cancer space, even among patients with early-stage disease.
“Our cancer treatments are so financially toxic for our patients, that 1 in 20 Black or Latinx women are actually becoming housing unstable as a result of the cost of their care,” Dr. Chino said. “So, although you may survive your cancer diagnosis, you are left financially devastated.”
Additional issues inherent among cancer-related disparities that stem from financial toxicity include unequal access to clinical trials because of out-of-pocket costs, insurance-related barriers preventing enrollment, and lower-income patients being less likely to even participate. Younger patients are also more likely to experience a negative event such a losing a job or having to endure a furlough and not even having enough money to pay rent or a mortgage.
It is clear we need significant restructuring of the for-profit healthcare system if we seek to truly address and end the breast cancer crisis. For more, see our longstanding stance on Universal Healthcare.
Chino F. Financial toxicity. Presented at: SABCS; December 6-10, 2022; San Antonio, TX.