Cost of Cancer in Adolescents and Young Adults in the United States: Results of the 2021 Report by Deloitte Access Economics, Commissioned by Teen Cancer America

Abstract

PURPOSE The purpose of this report, commissioned by Teen Cancer America and performed by Deloitte Access Economics in 2021, was to estimate the total costs incurred by adolescent and young adults (AYAs) after cancer diagnosis in the United States (US) over their life course. METHODS The incidence of cancer in 2019 among AYAs age 15-39 years was estimated from the US Cancer Statistics Public Use Database, and relative survival was projected from the Surveillance, Epidemiology, and End Results Program. Cost domains included health system, productivity, and well-being costs. Components were estimated with published literature and pooled data from the Medical Expenditure Panel Survey from 2008 to 2012 and inflated to 2019 dollars. RESULTS The economic and human costs of cancer in AYAs are substantial—$23.5 billion overall, corresponding to $259,324 per person over the lifetime. The majority of costs are borne by AYA cancer survivors themselves in the form of lost productivity, loss of well-being, and loss of life. CONCLUSION These findings underscore the need to address the burden of cancer in AYAs through targeted programs for AYAs, such as financial navigation and health insurance literacy interventions, as well as local and national policy initiatives to address access to and enhanced coverage for clinical trials participation, fertility services, and survivorship care.

Survival Trends Among Adolescents and Young Adults Diagnosed With Cancer in the United States: Comparisons With Children and Older Adults

“…The substantial cost of cancer in AYAs, including lost productivity, loss of well-being, and loss of life, underscores the need for improvements in treatment and access to care for these patients. 19 Differences in biology, clinical trial enrollment, delivery of treatment according to clinical guidelines, supportive care, and long-term survivorship care may account for the survival disparities we observed and warrant further investigation.…”

“…This progress is likely related to both effective treatments for HIV/AIDS-related cancers and national initiatives to improve outcomes in AYAs. 2,5,9,11,[17][18][19][20] These initiatives included efforts to address low clinical trial enrollment among AYAs through increased collaboration between pediatric and medical oncology cooperative groups across the NCI Clinical Trials Network to create clinical trials inclusive of the entire AYA age range that improve treatment and understanding of potentially unique biologic characteristics of cancers affecting AYAs. 17,18,[20][21][22] Efforts have also recognized the importance of health insurance to improve access to care and the need for AYAs to receive treatment in specialized cancer centers for certain cancers.…”

“…Future studies should prioritize the identification of factors affecting these survival differences, especially in populations where there has been no improvement or decreases in survival (Fig3). The substantial cost of cancer in AYAs, including lost productivity, loss of well-being, and loss of life, underscores the need for improvements in treatment and access to care for these patients 19. Differences in biology, clinical trial enroll-Five-Year Relative Survival and AAC Among AYAs With Cancer, by Cancer Site and Sex, SEER 17 Research Program Soft tissue sarcoma includes fibromatous neoplasms, liposarcoma, synovial sarcoma, leiomyosarcoma, malignant gastrointestinal stromal tumor, epithelioid sarcoma, desmoplastic small round cell tumor, and other soft tissue sarcomas.…”

Health Care Transitions Among Adolescents and Young Adults With Cancer

“…53 Many survivors, however, report interruptions in key developmental milestones, such as education completion, 54 finding and holding a job, 55,56 and maintaining mature relationships, 57 because of the cancer experience. 19 These events may lead to delayed or regressed development and thereby hinder transitions to independence that would be expected for age-matched peers. AYA-specific transition readiness assessments 58,59 may be useful adjunct tools to identify individuals who are ready to transition to adult care or perhaps not yet ready despite normative age-related cutoffs.…”

“…16 Unfortunately, health care transitions are susceptible to a number of barriers that impede continuity and access to care. 17 For example, complex medical populations such as children or adolescents with special health care needs, 18,19 defined broadly as those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally, confront multilevel barriers to health care transitions. These include complex social challenges (eg, insurance, employment) and a lack of dedicated resources to support transitions, care team training, and/or structured transition processes.…”