Annual Report to the Nation Part 2: Patient economic burden of cancer care more than $21 billion in the United States in 2019

Part 2 of the latest Annual Report to the Nation on the Status of Cancer finds that cancer patients in the United States shoulder a large amount of cancer care costs. In 2019, the national patient economic burden associated with cancer care was $21.09 billion, made up of patient out-of-pocket costs of $16.22 billion and patient time costs of $4.87 billion. Patient time costs reflect the value of time that patients spend traveling to and from health care, waiting for care, and receiving care, according to the report.

The report, appearing October 26, 2021, in JNCI: The Journal of the National Cancer Institute, is the most comprehensive examination of patient economic burden for cancer care to date and includes information on patient out-of-pocket spending by cancer site, stage of disease at diagnosis, and phase of care. While this analysis is about the costs that are directly incurred by patients, which are critical to patient finances, the total overall costs of cancer care and lost productivity in the United States are much larger.

Among adults aged 65 years and older who had Medicare coverage, average annualized net out-of-pocket costs for medical services and prescription drugs, across all cancer sites, were highest in the initial phase of care, defined as the first 12 months following diagnosis ($2,200 and $243, respectively), and the end-of-life phase, defined as the 12 months before death among survivors who died ($3,823 and $448, respectively), and lowest in the continuing phase, the months between the initial and end-of-life phases ($466 and $127, respectively). Across all cancer sites, average annualized net patient out-of-pocket costs for medical services in the initial and end-of-life phases of care were lowest for patients originally diagnosed with localized disease compared with more advanced stage disease.

“As the costs of cancer treatment continue to rise, greater attention to addressing patient medical financial hardship, including difficulty paying medical bills, high levels of financial distress, and delaying care or forgoing care altogether because of cost, is warranted,” said Karen E. Knudsen, M.B.A, Ph.D., chief executive officer, American Cancer Society. “These findings can help inform efforts to minimize the patient economic burden of cancer, and specific estimates may be useful in studies of the cost-effectiveness of interventions related to cancer prevention, diagnosis, treatment, and survivorship care.”

The annual report is a collaborative effort among the American Cancer Society; the Centers for Disease Control and Prevention (CDC); the National Cancer Institute (NCI), part of the National Institutes of Health; and the North American Association of Central Cancer Registries. The report provides annual information about cancer occurrence and trends in the United States. Part 1 of this annual report, released in July 2021, focused on national cancer statistics.

Analyses of the differences in patient economic burden by cancer type found substantial variation in patient out-of-pocket costs, reflecting differences in treatment intensity and duration as well as survival. In 2019, national out-of-pocket costs were highest for breast ($3.14 billion), prostate ($2.26 billion), colorectal ($1.46 billion), and lung ($1.35 billion) cancers, reflecting the higher prevalence of these cancers.

“In the modern era of cancer research, we have to think about treatment costs and how they impact our patients. As exciting and promising as cancer research is, we are keenly aware of the issue of financial toxicity for these patients,” said Norman E. “Ned” Sharpless, M.D., director of NCI. “Therapies that are highly effective are no doubt good news, but if they are unaffordable it is not the total kind of progress we would like to see. Finding ways to ensure that not just some, but all, patients get access to therapies that are beneficial to them is an important goal we must continue to strive for in the cancer community. This report will help guide us toward achieving that goal.”

“The cost of having cancer is enormous and an extreme burden on people and families, particularly for those who are uninsured or underinsured. Prevention is key to lowering out-of-pocket costs,” said Karen Hacker, M.D., M.P.H, director of CDC’s National Center for Chronic Disease Prevention and Health Promotion. “Unfortunately, we know that many of these same people also have lower cancer screening use and may end up paying more for their cancer care. Access to the right cancer screening tests at the right time is an important step toward health equity, and we must work to make this a reality.”

The authors say that, in addition to morbidity and mortality from cancer and cost of cancer treatment by insurance carriers, out-of-pocket and patient time costs are other metrics that highlight the immense economic burden of cancer—making it a public health priority. Estimates of patient out-of-pocket and time costs can inform discussions between providers and patients about expected costs of treatment, an important element of high-quality care.

For more information about the report, see: https://seer.cancer.gov/report_to_nation/.

About the American Cancer Society (ACS): The American Cancer Society is a global grassroots force of 1.5 million volunteers dedicated to saving lives, celebrating lives, and leading the fight for a world without cancer. For more than 100 years, the American Cancer Society has been the preeminent cancer-fighting organization in the United States through research, education, advocacy, and patient services. We have helped lead the evolution in the way the world prevents, detects, treats, and thinks about cancer. For more information go to www.cancer.org.

About the Centers for Disease Control and Prevention (CDC): CDC works 24/7 protecting America’s health, safety, and security. Whether diseases start at home or abroad, are curable or preventable, chronic or acute, or from human activity or deliberate attack, CDC responds to America’s most pressing health threats. CDC is headquartered in Atlanta and has experts located throughout the United States and the world. 

About the National Cancer Institute (NCI): NCI leads the National Cancer Program and NIH’s efforts to dramatically reduce the prevalence of cancer and improve the lives of cancer patients and their families, through research into prevention and cancer biology, the development of new interventions, and the training and mentoring of new researchers. For more information about cancer, please visit the NCI website at cancer.gov or call NCI’s contact center, the Cancer Information Service, at 1-800-4-CANCER (1-800-422-6237). 

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit nih.gov. 

About the North American Association of Central Cancer Registries (NAACCR): The North American Association of Central Cancer Registries, Inc., is a professional organization that develops and promotes uniform data standards for cancer registration; provides education and training; certifies population-based registries; aggregates and publishes data from central cancer registries; and promotes the use of cancer surveillance data and systems for cancer control and epidemiologic research, public health programs, and patient care to reduce the burden of cancer in North America. For more, see naaccr.org.