Challenges related to the costs of cancer care can affect a person's treatment and well-being. One term for these challenges is "financial toxicity." Financial toxicity can start at diagnosis and may continue after cancer treatment ends.
The burden of medical and non-medical expenses is different for everyone. Although talking about financial concerns can be hard, be open with your health care team. There may be ways to lower treatment costs without reducing effectiveness. Your team can also connect you to financial resources and services.
How does financial toxicity affect cancer care?
Costs of cancer treatment may be more than a person can afford. In an effort to lower personal costs, some people make difficult choices that keep them from getting their full care. For example, they may:
Not fill necessary prescription drugs
Skip medication doses or take less than the prescribed amount
Miss health care appointments
Refuse recommended medical tests
Decline to get mental health care
Not having health insurance, being unable to pay household expenses or travel costs, and being unable to take time off work are common reasons for delaying treatment. But, this can increase health risks and lead to more costs later. It can also cause stress that slows down recovery.
The financial impact of cancer can be ongoing. Some people need treatment for several months or years. And follow-up care is needed after treatment ends. Also, many people who had cancer treatment have a risk of developing long-term side effects that need care.
How does financial toxicity affect quality of life?
Financial toxicity can cause mental, emotional, and physical problems. People with cancer facing economic hardships are more likely to:
Report a lower health-related quality of life, with more symptoms and pain
Experience depression or anxiety
Worry about their cancer returning
Feel unhappy with social activities and relationships
For some people, cancer care can lead to debt or bankruptcy, further impacting their quality of life.
Who is at risk for financial toxicity?
Research continues on how complex factors such as race, income, employment, and insurance status relate to financial toxicity. Certain groups of people may be more likely to experience it.
Teens and young adults. Teens and young adults with cancer, ages 15 to 39, face more financial distress than other groups. Reasons can include:
No health insurance or inadequate health insurance that leaves them with high out-of-pocket costs
Increasing financial commitments, such as young children and home mortgages
Low savings and fewer financial assets
Less likely to be employed than adults older than them
Learn more about young adults, cancer, and financial stress.
Older adults. Even with Medicare, older adults often have large out-of-pocket medical costs. Many older adults also live on restricted incomes. One study found that a quarter of adults age 60 and above with cancer were already in financial distress when first meeting with their oncologist.
People with certain types of cancer. You may be at higher risk for financial toxicity if you have advanced or metastatic cancer. Treatment can be particularly expensive or ongoing. Other types of cancers also bring a higher risk of economic stress, including:
Cancer that has come back after treatment
Cancer with a low chance of recovery
More than 1 kind of cancer
Cancer that needs treatment with chemotherapy or radiation therapy
Survivors of childhood cancer. People who had cancer as a child may have late effects from treatment that require care long into adulthood. Childhood cancer can also interrupt education, delaying or limiting work potential.
Caregivers. Family members and friends supporting a person with cancer can also feel financial toxicity. These caregivers may need to spend money on a loved one's food, medicine, transportation, and other needs. They may also struggle to balance time off work and their caregiving role. This can affect their own financial well-being and quality of life. Read more about how financial toxicity can impact cancer caregivers.
Talking with your health care team about financial toxicity
Your health care team members will only know you are experiencing financial stress if you tell them. To start a conversation, you might want to say: "I am worried about the costs related to my cancer treatment. Can we talk about my concerns?" Ask all the questions about cost that you need, until you feel comfortable.
Have this conversation before your treatment starts. Continue it during treatment and follow-up care. Your doctor may be able to improve care so it is both high quality and more affordable. For example, they may be able to prescribe a generic medication that costs less. Or they may be able to combine clinical visits to reduce transportation and health insurance co-payment costs.
In addition to your doctor, work with other members of your health care team experienced in managing and lowering medical costs. They can include:
Financial counselors at the place you receive treatment
Ways to prevent, reduce, or manage financial toxicity
No matter what type of cancer you have, there are steps you can take to manage financial difficulties.
Get health insurance, if you don't have it. There are private and government-sponsored health insurance programs. In the United States, if you are 65 and older, you can enroll in Medicare. People with lower incomes who are older or have a disability may also be able to enroll in Medicaid. Depending on your state, other low-income people may also be eligible. If you do not have health insurance through work and do not qualify for Medicare or Medicaid, visit the U.S. government website www.HealthCare.gov for insurance options.
Connect with a health insurance case manager. Case managers at your insurance company can help you understand which treatment costs are covered and what you may owe. They can also help you solve problems with bills and appeal coverage decisions.
Talk with your company's human resources (HR) department. They can help you understand the full benefits of your health insurance coverage. They can also explain the disability and medical leave benefits you may have.
Contact support organizations. There are many local and national organizations that provide financial help to people with cancer. They can offer several types of assistance, such as help with medical bills, medications, insurance co-pays, transportation, lodging, and childcare.
Ask your pharmacist about prescription assistance programs. You may be able to get your medication free or at a lower cost. Some drug companies and cancer advocacy groups offer these programs.
Negotiate bills with health care providers and hospitals. Many people do not know that health care providers and hospitals will often negotiate manageable payment plans. They may also reduce your bills.
Track your bills and paperwork. Keep detailed records about your cancer care and track bills and health insurance claims. Doing so will help you manage medical payments.