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Financial Toxicity (Financial Distress) and Cancer Treatment (PDQ®)–Patient Version

General Information About Financial Toxicity (Financial Distress) and Cancer Treatment

Key Points

  • Financial toxicity describes problems a patient has related to the cost of medical care.
  • Several studies show that people with cancer and survivors are more likely to have financial toxicity than are people without cancer.
  • The level of financial toxicity you may have will depend on several factors in your household.
  • Cancer treatment can affect your ability to work and pay your bills.

Financial toxicity describes problems a patient has related to the cost of medical care.

The terms financial toxicity and financial distress are used to describe how out-of-pocket costs can cause financial problems for a patient. Out-of-pocket costs are what you pay for your medical care that is not covered by your health insurance. Out-of-pocket costs include the following:

  • Copayments: Amount you pay for each healthcare service, such as a doctor appointment or prescription.
  • Deductibles: Amount you pay for your medical care before your health insurance plan begins to pay.
  • Coinsurance: Percentage of costs you pay for a service that your health insurance covers after you have paid your deductible; for example, you pay 20% and your insurance pays 80%.

These costs can be for hospital stays, outpatient services (procedures and tests that can be done without staying overnight in the hospital), medical appointments, and prescription drugs.

Cancer survivors usually report higher out-of-pocket spending than people who have not had cancer. Some cancer survivors report spending more than 20% of their annual income on medical care.

Financial toxicity may also be called financial distress, financial stress, financial hardship, financial burden, economic burden, and economic hardship.

There have been no randomized clinical trials studying financial toxicity in people with cancer. The information in this summary is mainly based on studies that only included survivors and people with certain cancers, so it may not apply to all people with cancer.

Several studies show that people with cancer and survivors are more likely to have financial toxicity than are people without cancer.

Cancer is one of the most expensive medical conditions to treat in the United States. People with cancer may receive multiple types of treatments, including radiation therapy and systemic treatment, and may be hospitalized. People with cancer who have health insurance are paying higher premiums than in the past. They are also paying more for copayments, deductibles, and coinsurance.

Compared to 10 years ago, patients receive more expensive chemotherapy, immunotherapy, and other new types of treatments. Copayments for prescription drugs covered by health insurance may be more for higher priced drugs or brand name drugs (versus generic drugs) and may increase over time. These copayments and coinsurance for drugs may cause financial toxicity even for people with cancer who have health insurance.

Cancer survivors may have financial problems many years after they are diagnosed. This is because they may be paying for ongoing cancer treatment or care for late effects from their treatment.

The level of financial toxicity you may have will depend on several factors in your household.

When you are diagnosed with cancer, the following factors in your household may affect your risk of financial toxicity:

  • whether you make the most money for your household
  • how much money other people in your household make
  • how much debt you had before you were diagnosed with cancer
  • your assets
  • costs related to your cancer
  • how the cancer and its treatment affect your ability to work
  • whether you have health and disability insurance and what they cover

You and your family may have the following problems because of your cancer diagnosis:

  • less income and assets
  • debt because of the cost of your cancer care
  • trouble paying for housing, food, and bills
  • bankruptcy

Cancer treatment can affect your ability to work and pay your bills.

Having cancer may make it hard for you to do the physical and mental tasks for your job. You may miss time at work, or not be able to work at all. One study showed that working people who are getting cancer treatment missed about 22 more workdays a year than those who did not have any cancer treatment. Not being able to work may affect your employment-based health insurance (this is when part or all of your premium is paid by your employer).

You may also worry and have stress about paying medical bills related to your cancer. People with cancer have reported worrying about wages lost for sick time or going to medical appointments. You may also have difficulty and stress when trying to understand complex medical bills.

Risk Factors Related to Financial Toxicity (Financial Distress)

Key Points

  • The type of cancer you have, how severe it is, and the treatment you receive can affect your risk of financial toxicity.
  • Your age, race and ethnicity, income, and whether you have a job can affect your risk of financial toxicity.
  • The type of health insurance that you have, or not having health insurance, can affect your risk of financial toxicity.

The type of cancer you have, how severe it is, and the treatment you receive can affect your risk of financial toxicity.

Patients with the following types of diseases have a higher risk of financial toxicity:

This is partly because their cancer and treatment may keep them from having a job.

Patients who have been treated with chemotherapy and radiation therapy are more likely to have higher out-of-pocket costs and financial toxicity than patients who have not had those treatments.

Your age, race and ethnicity, income, and whether you have a job can affect your risk of financial toxicity.

Studies have shown that younger age at the time of cancer diagnosis increases the risk of financial toxicity. Younger people with cancer may have financial toxicity because of the following:

  • a lack of savings and assets
  • other financial responsibilities, such as raising children
  • not having health insurance ( people younger than 65 years are not eligible for Medicare) or having a high-deductible health insurance plan with high out-of-pocket costs

Survivors of childhood cancer may be more likely to have financial problems. A cancer diagnosis during childhood may disrupt education and limit job opportunities. Childhood cancer survivors may have higher out-of-pocket costs than their siblings due to the risk of second cancers and lasting effects of their cancer treatment.

Some studies have shown that people who belong to racial and ethnic minority groups may be more likely to have financial problems after being diagnosed with cancer. More research needs to be done in this area.

Patients from lower-income households have a higher risk of financial toxicity than patients from higher-income households. Losing a job has also been shown to be a risk factor for debt and bankruptcy.

Several studies have shown that people with cancer may experience:

  • loss of a job
  • change in job status, such as switching to part-time work or taking extended leave
  • difficulty returning to work
  • earning less income
  • general loss of productivity

The type of health insurance that you have, or not having health insurance, can affect your risk of financial toxicity.

If you do not have health insurance, you have a high risk of financial toxicity, especially because cancer costs are rising. However, even if you have health insurance, you may still have high out-of-pocket costs for your cancer care.

If you are enrolled in Medicare, you can also enroll in additional plans that can help reduce your out-of-pocket costs. You can choose to get supplemental insurance that can help cover medical costs that your regular insurance plan does not cover, and you can enroll in Medicare Part D, which is a Medicare plan that covers prescription drugs.

One study found that patients who have public health insurance (Medicaid or Medicare) have a higher risk of financial toxicity compared to patients who have private health insurance. Patients with public health insurance may also have fewer savings and assets, which is a risk factor for financial toxicity.

Effects of Financial Toxicity (Financial Distress) on People with Cancer

Key Points

  • Patients may not take their medicine as directed so that they can save money on copayments.
  • Patients who have financial toxicity may have a lower quality of life.
  • Financial toxicity may lead to debt, bankruptcy, and other harmful financial events.
  • Informal caregivers often share in the experience of financial toxicity.

Patients may not take their medicine as directed so that they can save money on copayments.

Some patients have reported skipping doses or taking less medicine than prescribed, to make their prescription last longer and save money. Patients have also reported not filling a prescription because of the cost.

The higher the copayment, the less likely patients are to take their medicine as directed.

Patients who have financial toxicity may have a lower quality of life.

Studies have shown that patients who have financial toxicity reported having a lower quality of life, more symptoms, and more pain. One study showed that some patients felt financial toxicity was more severe than physical, emotional, social, or family distress.

In addition to lower quality of life, patients who have financial toxicity are also more likely to report:

  • poor physical health
  • poor mental health, including feeling depressed
  • being unsatisfied with social activities and relationships
  • worrying that their cancer may come back

Financial toxicity may lead to debt, bankruptcy, and other harmful financial events.

One study found that people with cancer experienced more harmful financial events, including:

  • an inability to pay bills
  • past-due mortgage payments
  • foreclosures or repossessions of property

In another study, some cancer survivors reported the following problems related to financial toxicity:

  • worrying about paying large bills related to cancer
  • going into debt
  • filing for bankruptcy

You may have to do some of the following to help pay for your medical care:

  • use your savings
  • borrow money
  • spend less on leisure activities, food, clothing, and utilities
  • sell your stocks, investments, possessions, or property
  • move to lower-cost housing

Informal caregivers often share in the experience of financial toxicity.

Family members and friends may provide informal care for people with cancer. They often share in the experience of financial toxicity by spending money on food, medicine, and other things the patient needs. They may also need to take time off from work to provide care for the patient. These actions may lead to a higher sense of burden, lower quality of life, and poorer mental health for the caregiver.

Ways to Reduce Financial Toxicity (Financial Distress)

Key Points

  • There may be ways to reduce financial toxicity.

There may be ways to reduce financial toxicity.

The following are being studied as possible ways to reduce financial toxicity:

  • meeting with a financial navigator who will teach you about the health insurance plans and cost-saving methods for treatments that you are eligible for
  • hospitals posting their prices so that healthcare professionals and patients know the costs when making decisions about which tests and treatments to use
  • introducing value-based pricing so that patients can choose higher-value treatments with lower out-of-pocket costs
  • reforming health insurance by passing policies that help people with cancer

See Managing Costs and Medical Information for more information about ways to manage the costs of your cancer care.

About This PDQ Summary

About PDQ

Physician Data Query (PDQ) is the National Cancer Institute's (NCI's) comprehensive cancer information database. The PDQ database contains summaries of the latest published information on cancer prevention, detection, genetics, treatment, supportive care, and complementary and alternative medicine. Most summaries come in two versions. The health professional versions have detailed information written in technical language. The patient versions are written in easy-to-understand, nontechnical language. Both versions have cancer information that is accurate and up to date and most versions are also available in Spanish.

PDQ is a service of the NCI. The NCI is part of the National Institutes of Health (NIH). NIH is the federal government’s center of biomedical research. The PDQ summaries are based on an independent review of the medical literature. They are not policy statements of the NCI or the NIH.

Purpose of This Summary

This PDQ cancer information summary has current information about the treatment of cancer and financial toxicity (financial distress). It is meant to inform and help patients, families, and caregivers. It does not give formal guidelines or recommendations for making decisions about health care.

Reviewers and Updates

Editorial Boards write the PDQ cancer information summaries and keep them up to date. These Boards are made up of experts in cancer treatment and other specialties related to cancer. The summaries are reviewed regularly and changes are made when there is new information. The date on each summary ("Updated") is the date of the most recent change.

The information in this patient summary was taken from the health professional version, which is reviewed regularly and updated as needed, by the PDQ Adult Treatment Editorial Board.

Clinical Trial Information

A clinical trial is a study to answer a scientific question, such as whether one treatment is better than another. Trials are based on past studies and what has been learned in the laboratory. Each trial answers certain scientific questions in order to find new and better ways to help cancer patients. During treatment clinical trials, information is collected about the effects of a new treatment and how well it works. If a clinical trial shows that a new treatment is better than one currently being used, the new treatment may become "standard." Patients may want to think about taking part in a clinical trial. Some clinical trials are open only to patients who have not started treatment.

Clinical trials can be found online at NCI's website. For more information, call the Cancer Information Service (CIS), NCI's contact center, at 1-800-4-CANCER (1-800-422-6237).

Permission to Use This Summary

PDQ is a registered trademark. The content of PDQ documents can be used freely as text. It cannot be identified as an NCI PDQ cancer information summary unless the whole summary is shown and it is updated regularly. However, a user would be allowed to write a sentence such as “NCI’s PDQ cancer information summary about breast cancer prevention states the risks in the following way: [include excerpt from the summary].”

The best way to cite this PDQ summary is:

PDQ® Adult Treatment Editorial Board. PDQ Financial Toxicity (Financial Distress) and Cancer Treatment. Bethesda, MD: National Cancer Institute. Updated <MM/DD/YYYY>. Available at: https://www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity-pdq. Accessed <MM/DD/YYYY>. [PMID: 28682576]

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Disclaimer

The information in these summaries should not be used to make decisions about insurance reimbursement. More information on insurance coverage is available on Cancer.gov on the Managing Cancer Care page.

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