Financial Toxicity and Equitable Access to Clinical Trials

Am Soc Clin Oncol Educ Book. 2019 Jan:39:11-18. doi: 10.1200/EDBK_100019. Epub 2019 May 17.

Abstract

Financial barriers to clinical trial enrollment are an area of active investigation. Financial toxicity as a concept describes how high costs and financial burden can lead to compromised care and outcomes. Despite the potential to yield large survival benefits and improved access to cutting-edge therapies, less than 5% of adult patients with cancer are enrolled in a clinical trial. Disparities in trial enrollment exist along age, ethnic, and sociodemographic lines, with younger, poorer, nonwhite patients with private insurance-the exact population who may be at highest risk for financial toxicity-less likely to participate. Cost and insurance concerns remain an obstacle for clinical trial enrollment for certain patient populations. Changing the clinical trial paradigm with a focus on addressing structural and clinical barriers to clinical trial enrollment is paramount. This includes expanding access to clinical trials within community populations, advocating for health policy changes to guarantee insurance coverage of clinical trial standard-of-care health care, and considering noncoercive financial assistance (particularly for indirect costs like travel and lodging) for participants to defray their additional costs of participation. Additional steps toward education, cost transparency, and expansion of foundation assistance may also improve equitable access to clinical trials for all.

Publication types

  • Review

MeSH terms

  • Clinical Trials as Topic*
  • Cost of Illness*
  • Health Care Costs
  • Health Services Accessibility*
  • Healthcare Disparities*
  • Humans
  • Neoplasms / diagnosis
  • Neoplasms / epidemiology
  • Neoplasms / therapy
  • Patient Participation
  • United States / epidemiology