The side effects from cancer treatment can be notoriously toxic: nausea, hair loss, pain, and fatigue are among the most common. But the economic burdens of care—known as financial toxicity—can also that threaten patients’ health and well-being.
Now, a new analysis published last week in JAMA Network Open quantifies the level of financial toxicity among breast cancer patients worldwide.
Based on analysis of comparable measures of financial toxicity, researchers found that the overall rate of financial toxicity among patients with breast cancer was nearly 79% in low- and middle-income countries and 35% in high-income countries. By comparison, financial toxicity rates in low- and middle-income countries overall, across all health conditions, ranged from 6% to 12%.
The dramatically higher rates of financial toxicity among breast cancer patients may reflect prior evidence showing that lifetime direct medical costs to treat breast cancer in the United States can reach $100,000 per patient. More recent research showed that for younger and midlife women with metastatic breast cancer, the total cost could top $200,000. As Forbes reported in 2022, the total cost of one woman’s breast cancer care was a whopping $334,000.
According to a 2021 report on patient economic burdens associated with cancer care published in the Journal of the National Cancer Institute, total out-of-pocket costs for breast cancer care in 2019 was nearly $3.14 billion, more than any other type of cancer.
Financial toxicity results from a mix of costs that affect patients. For example, patients face direct medical costs, such as treatment expenses, hospital and pharmacy bills, laboratory charges, and outpatient-treatment expenses, such as the cost of office visits or procedures. They must also pay nonmedical costs, such as transportation, food, and lodging related to treatment, and indirect costs, such as lost wages when people can’t work due to illness or time getting treatment.
“The cost of breast cancer is multi-layered,” said Anna Crollman, 35, whose breast cancer has been in remission for eight years. “Not only do you have the out-of-pocket deductibles, medical care, and medical bills but you are also covering the cost of gas, medicine, side effect treatments, and the loss of work and pay due to treatment and sickness.”
A 2020 survey of mid-life women about the costs of cancer showed that 60% of respondents reported feeling stress about paying direct and indirect costs. About one in ten women reported having to borrow money to pay for direct or indirect costs of cancer.
Crollman and her husband had been saving up for a year of maternity leave she hoped to take. She said they’d spent years planning and preparing for that stage of their lives. Her breast cancer diagnosis disrupted those plans.
“It was devastating to exhaust those funds for fertility preservation costs not covered by insurance as well as my long-term medical care,” she said. “I am still grateful we had the funds and insurance to ensure I got the best care and had options, but it altered our life plans and finances following active treatment for many, many years.”
Now eight years in remission, Crollman said they are still paying off medical debt and dealing with the ongoing impact of cancer on their family planning and fertility costs.
“Even as a middle-class dual income household we never fully recovered from the financial impact of cancer,” she said.
The new paper analyzed results from 34 different studies on financial toxicity published between 2008 and 2021, including 24 studies from high-income countries such as the United States, Canada, South Korea, and Denmark and 10 studies from low- and middle-income countries such as China, Haiti, Kenya, Nigeria, Egypt, Iran, and one study that included multiple Southeast Asian countries.
Measures of financial toxicity varied across the different studies. Some used quantitative thresholds, such as medical costs greater than 40% of household capacity to pay or out-of-pocket costs that exceeded 30% of annual household income.
Others used patients’ self-reporting of financial difficulty, such as trouble paying medical bills or having to pay more for medical care than they felt was affordable. Still other studies defined financial toxicity based on patients’ accounts of financial consequences due to cancer treatment, such as losing a job, having to borrow money or go into debt, having trouble paying for living expenses such as food or rent, or having to go without medical treatment because of cost.
According to the analysis, there was no clear association between rates of financial toxicity and the patient’s race. But there was no clear association between financial toxicity and the patient’s education level, insurance status, employment status. The authors did report that they saw lower rates of financial toxicity in patients who live in countries with universal health coverage.
The authors recommend four policies to reduce financial toxicity, such as educational campaigns on breast cancer screening to improve early diagnosis and treatment; expanded health insurance coverage to minimize out-of-pocket medical costs; programs to help with nonmedical and indirect costs; and increased funding for breast cancer screening and treatment infrastructure.
Crollman would add another way to mitigate financial toxicity for breast cancer patients.
“I would ask to see fertility costs covered in full for cancer patients both in terms of preservation options and later family planning costs,” she said. “The financial burden of these aspects is unmatched and having support in those areas would have greatly changed our lives, especially as a young couple with no children at the time of my diagnosis.”