Financial toxicity is the negative impact of the economic burden of healthcare on patients and their families, which contributes to poor well-being and decreased quality of life. Efforts are needed at all levels — the care provider, health systems, insurance, and government agencies — to address this problem and how it leads to less favorable health outcomes among the public.
Medical interventions can have toxic effects on patient well-being, but so can the costs of care. The term financial toxicity highlights the costly burdens of cancer treatments, prolonged hospitalizations, and other expenses that distress patients and their families.
The expenses for accessing and receiving medical care, such as doctor appointments, diagnostic tests, drugs, surgery, supportive therapies and diets, equipment, and other expenses, can add up quickly. The costs are the responsibility of the patient, who must pay them in full or at least partially, depending on their insurance or coverage by a national health system (e.g., Medicare). There can be additional expenses related to travel and the time spent receiving care, which may lead to time off work. Those add to the distress of the medical condition itself.
One study estimated that FT affects about 137 million adults (56%) in the United States when considering all aspects of various diseases. The most common burden is the worry about costs, reported by 43% of people. The objective burden, such as not being able to pay bills, was reported by 26% of people. However, the proportion of adults suffering financial toxicity varies among diseases. Roughly 54% of adults with cardiovascular disease report FT, compared to 42% of adults with cancer.
The financial costs of accessing and receiving care are unavoidable. Some patients, however, don’t experience FT, while even minimal costs create substantial worry among other patients. Varying factors contribute to perceiving costs or managing disease as stressors, including someone’s economic status, the availability of resources to that person, and that patient’s access to financial assistance programs. Even patients with the means to pay often must make sacrifices, such as using their savings or reducing household expenses.
Distress can come from the uncertainty about the overall cost of a patient’s care, when those payments are due, or how much their insurance will cover. Some researchers studying the topic have used the terms “financial abuse” or “financial torture.” According to these reports, the suffering is inflicted by the same institutions that should heal patients.
The behavior of patients in response to FT is an important aspect of care. They may skip doctor’s appointments or medications. In the study that showed about 56% have been affected by FT, roughly 20% reported avoiding or delaying care due to worry about the cost. This can lead to changes in morbidity and mortality rates. One study showed that financial distress leading to bankruptcy after a cancer diagnosis was a risk factor for premature death.
Financial toxicity will never be completely eliminated, but efforts are being made at many levels to reduce costs. These include care providers, health systems, insurers, and government programs. Some of the interventions evaluated show promise in reducing FT by overcoming transportation and communication barriers, improving financial management skills, decreasing anxiety about medical bills, and reducing the likelihood that patients skip treatments.
Many advocate for cost conversations between patients and providers and transparency around the cost of treatments, but it is unclear how these would work or whether they would have a positive effect. For example, if cost conversations were implemented, they wouldn't increase patients’ concerns about receiving recommended treatments. Instead, they should enable people to find resources upfront to reduce the costs of treatments and alleviate financial toxicity. Like any adverse effect of treatment, financial toxicity needs to be identified and stopped early to prevent its consequences.
To reduce financial toxicity, new frameworks and models are beginning to emerge. For example, a new theoretical model has been proposed in which financial burden (both general and specific to health care) and current costs and worry over future costs are examined together. Researchers hope this explains their effect on quality of life, morbidity (having an illness), and mortality.
Bringing together researchers from several government agencies, cancer-focused non-profits, and patient advocacy organizations, the Interagency Consortium to Promote Health Economics Research on Cancer (HEROiC) aims to change clinical practice and policy to improve access to cancer care and reduce cancer’s economic burden and related financial hardship. Similarly, the Costs of Care group is led by researchers focusing on helping health systems and clinicians provide affordable and equitable care. Through these research efforts, it can be fully understood how important and urgent eliminating financial toxicity truly is.