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One in five patients with cancer reported receiving unfair treatment because of their finances, disease status, or race and ethnicity, according to a new study collaboration by the University of Alabama-Birmingham (UAB) using data from the Patient Advocate Foundation (PAF), a national non-profit organization providing case management and financial aid to individuals with chronic illness.
The study used data from a longitudinal nationwide survey PAF sent to adults with current or previous cancer treatment who had received PAF services from July 2019 to April 2020. In total, 587 patients with cancer responded.
Of the 23% of respondents who reported having received unfair treatment, more than half (58%) reported this treatment was from a doctor, nurse or healthcare provider. Less than half (46%) reported unfair treatment from an insurance company, 41% from the healthcare system and 14% from a pharmacist.
When asked why they were treated unfairly, respondents indicating unfair treatment due to education status, sex, or sexual/gender orientation were uncommon. Instead, the most common reasons for unfair treatment were disease or condition (42%), income or ability to pay (36%), and race and ethnicity (17%). However, 50% of respondents who identified as Black, Indigenous or people of color (BIPOC) reported high mistrust in medical providers.
“There are historical reasons why people may feel discriminated against in the health care setting, but we haven’t properly explored how socioeconomics affect patient perceptions of how they’re being treated,” said study co-author Nicole E. Caston, MPH, clinical data analyst at the UAB Division of Hematology and Oncology. “I don’t think that health care teams are aware that patients feel this way – it’s really eye-opening.”
Most survey respondents were female (72%) and about one-third were BIPOC. The most commonly reported cancers were hematologic (32%) and breast (32%).
“Previous survey data collections have indicated problems associated with financial toxicity in our PAF patients for quite some time,” said Kate Gallagher, MPH, vice president of health services research at Patient Advocate Foundation. “Seeing our recent data confirm not only the tangible ways in which it manifests – from bankruptcy to inability to afford utilities—but also the ways in which financial concerns can directly affect the relationship between the patient and their providers was remarkable.”
Co-author Gabrielle Rocque, MD, associate professor at the UAB Division of Hematology and Oncology, agreed, noting, “The majority of people who said they felt discrimination said they felt it from their provider or nurse. It adds a layer of complexity to the idea that providers should talk about costs with patients. These conversations should be approached with nuance, so that patients feel like they’re an equal partner in the care team and always treated with dignity.”
The researchers compared responses among those who reported fair treatment and those who reported unfair treatment. Respondents reporting unfair treatment were more likely to be unemployed/other (21% vs. 12%), have private insurance (35% vs. 26%), earn less than $48,000 annually (77% vs 71%), and report more mistrust in medical providers (57% vs. 24%).