A CANCER DIAGNOSIS RESULTS IN A LOT OF CHANGES for both the patient and the caregiver.
For the caregiver, those changes can include adjusting work schedules, which, in turn, can affect their finances.
The unexpected expense of cancer treatments coupled with the lack of paid leave can be a one-two punch to caregivers’ financial resources. “For many caregivers, keeping debt low or nonexistent may not be possible,” says Cathy J. Bradley, a health economics researcher and co-author of a study titled “Working, Low Income, and Cancer Caregiving: Financial and Mental Health Impacts,” published online April 12 in the Journal of Clinical Oncology. “The Federal Reserve reports that many households would have difficulty absorbing $400 in unexpected costs. Cancer treatments are among the most expensive treatments in the United States.”
In many instances, caregivers can take paid leave to care for their loved one, which can mitigate financial hardship, but that’s not always the case. Often, caregivers are faced with taking unpaid leave or having to stop working altogether—both of which negatively impact their finances.
According to Bradley’s study, 35% of cancer caregivers stopped working and 30% saw their household debt increase. Those in households earning less than the median household income were more likely to experience decreased income and stop work than peers in similar financial situations who were caring for people with conditions other than cancer.
“Data on reasons for stopping work was not part of this study, but we speculate that caregiving demands are greater for cancer patients,” says Bradley, an associate dean of the Colorado School of Public Health and deputy director of the University of Colorado Cancer Center. “We also speculate that lower-income households cannot pay for additional help so that the caregiver can continue working.”
A key element forcing caregivers to stop work is no paid leave at their workplace. According to the American Cancer Society Cancer Action Network (ACS CAN), studies show that cancer patients with paid leave have higher rates of job retention and lower rates of financial burden. However, 48% of caregivers report experiencing problems related to financial pressure caused by not being able to work or having to reduce work hours to care for their loved one.
“Cancer treatment is so all-consuming for the patient but also for the family and anyone who is caregiving for the patient,” says Jennifer Hoque, associate policy principal on access to care for ACS CAN. “And that includes all-consuming with finances and time. Time is money. The more time you have to spend caregiving for the cancer patient, the more potential for lost wages and other money you’re spending. And it’s not just time caring for the patient. It’s also transportation, taking the patient to and from their treatments. Sometimes it’s lodging because sometimes you have to stay overnight.”
To help cancer caregivers, ACS CAN supports legislation providing for paid leave in the workplace so everyone has access to it and can help their family members. The Family and Medical Insurance Leave (FAMILY) Act was introduced in Congress on May 17. If passed, it would provide workers with a maximum of 12 weeks of financial support during a family or medical leave from work. In addition, 11 states and Washington, D.C., have enacted paid leave laws.
Finding assistance is crucial for cancer caregivers. “Caregivers provide a tremendous service to their families and society at large with very few supports,” Bradley says. “As a result, they suffer not only physical and mental consequences, but they also suffer financial consequences that last for years. Lower-income households take on the greatest financial burden and may never recover.”
If you’re caring for a cancer patient, it’s important to find out what type of leave is available. For instance, the Family and Medical Leave Act currently in effect provides 12 weeks of unpaid leave during a one-year period. Although leave is unpaid, the law protects your job while you’re away from work. Also, find out how flexible your employer is in allowing remote work or changing your work hours for doctor appointments and treatments.
Other assistance may be available through local, state and national programs such as the CancerCare Co-Payment Assistance Foundation, HealthWell Foundation, and the Leukemia & Lymphoma Society. Patient navigators at your loved one’s hospital or cancer treatment center can also be a valuable resource in advising you about financial assistance.