The cost of cancer care continues to grow exponentially as many new and often expensive therapies become available, durations of many treatments become longer, and the number of cancer survivors continues to grow. For many people with cancer, treatments can be costly, and health insurance coverage is often inadequate in covering the full expenses of cancer. Compared to individuals without a cancer history, cancer survivors often have higher out-of-pocket health care costs, even years after an initial diagnosis. We refer to these financial burdens of cancer as “financial toxicity.”
We know that financial toxicity weighs heavily on the mind of many people with cancer. And although we in the cancer care community are trying to actively understand and decrease financial toxicity for people with cancer, we are also trying to better understand the financial burden associated with cancer caregiving.
Family members and friends often provide informal care for people with cancer. Providing car rides, going to appointments, running errands, and paying bills all fall under this umbrella term of “informal care.” Caregivers often spend more money on medicine, food, and other needs, such as childcare, when caring for a loved one with cancer. They may also face additional challenges when trying to meet the demands of employment while caring for their loved one. Often, there is not enough flexibility in the workforce to pursue professional goals while taking on a caregiving role. What makes things even more difficult is that health insurance and family income often depend on a caregiver’s ability to work. For many caregivers, it is very much an uphill battle.
It is no wonder, then, why caregivers feel financial toxicity. In fact, caregivers may have greater awareness of the costs of care and may feel even greater responsibility for meeting the financial responsibilities of care than their loved one with cancer. Part of this is because caregivers are often reluctant to speak about treatment costs in front of the person they are caring for, so they sacrifice their own health and financial well-being to try to meet the demands placed on them.
That is why it is so important for caregivers to have direct conversations with their loved one’s health care team about financial toxicity, as there may be less expensive options or other resources available to help. It’s also important to acknowledge and address the stress that financial toxicity causes for people with cancer and their caregivers. We know that financial toxicity causes increased levels of anxiety and depression, higher levels of pain and cancer symptoms, and reduced quality of life in people with cancer. Caregivers often face similar issues.
There are several things caregivers can do to reduce stress from medical bills, including working with social workers and financial navigators to lighten the burden. There are also federal mandates that require cost transparency in the United States, and more medical systems are using value-based pricing that focuses on the quality of care for patients. Additionally, there are federal workplace protections for caregivers against job loss, such as the Americans with Disabilities Act (ADA) and the Family and Medical Leave Act (FMLA). However, the implementation of these can vary considerably among different employers, so it’s important for caregivers to talk to their loved one’s care team for guidance on communication with employers. This can include conversations about the need for time away from work and help with understanding work leave policies.
If you are a caregiver experiencing financial toxicity, talk with the health care team about ways to get help and what resources might be available to you to relieve the costs of cancer caregiving. Learn more about financial resources to help with managing the costs of caregiving.