Current State and Future Needs of the Financial Advocacy Workforce: Workload, Responsibilities, and Education

November 2020 Vol 11, No 11
Christina Mangir, MS
Association of Community Cancer Centers
Lori Schneider
Green Bay Oncology
Angie Santiago, CRCS-I
Sidney Kimmel Cancer Center
Rifeta Kajdic
Association of Community Cancer Centers
Sarah Hudson-DiSalle, PharmD, RPh
The James Cancer Hospital and Wexner Medical Center
Eric Dallara, RPh
New England Cancer Specialists
Elana Plotkin
Association of Community Cancer Centers
Monique Dawkins, EdD, MPA
Association of Community Cancer Centers
Lorna Lucas, MS
Association of Community Cancer Centers

Background: Financial toxicity can be a devastating side effect for cancer patients and their families and may impact access to care, compliance with treatment, and outcomes. The financial advocate has emerged as a critical member of the multidisciplinary cancer care team. Financial advocates mitigate financial toxicity for patients and their families, support shared decision-making and care planning processes with cost and coverage information, and alleviate institutional financial toxicity. There is not currently a single job title associated with this role, but financial advocates may include financial navigators, social workers, nurse navigators, patient navigators, pharmacists, prior authorization specialists, and others. The Association of Community Cancer Centers (ACCC) Financial Advocacy Network provides professional development training, tools, and resources that empower financial advocates to increase patients’ access to high-quality care. ACCC conducted its biennial Financial Advocacy Network Census Survey to explore how the role of the financial advocate is evolving and to inform education initiatives.

Objectives: Identify challenges and barriers to mitigation of financial toxicity and implementation of financial navigation programs. Explore how cancer programs have implemented financial advocacy roles. Identify resources, education, and tools needed for financial advocates to serve their patients.

Methods: ACCC worked with its multidisciplinary Financial Advocacy Network Advisory Committee to guide this research. The survey was distributed to ACCC member institutions between March 30, 2019, and January 1, 2010, and included 43 closed-ended and open-ended questions. Exploratory analysis was performed on the final data set of 292 respondents from 153 unique cancer programs. Respondents include financial counselors/navigators (53%), oncology nurses (21%), oncology social workers (12%), oncology pharmacists (5%), and administrators (3%).

Results: Most cancer programs represented in the survey (60%) employ 1 to 3 dedicated financial advocates, 10% employ 4 to 5 advocates, 13% employ 6 or more, and 10% employ none. Responsibilities of financial advocates commonly include directly addressing patients’ financial concerns (74%), screening patients for financial distress (64%), and identifying and enrolling patients in manufacturer financial assistance (61%) and free drug programs (59%). One-third of respondents said they provide financial advocacy services to more than 20 patients per week. Asked if there are enough full-time employees to meet demand for financial advocacy services, 36% of respondents said there is not, and 34% replied “not always.” Fifty percent of respondents say that lack of resources is their top concern in providing financial navigation services followed by navigating a highly complex, changing landscape (37%), as well as patient education needs/low financial health literacy (31%). Seventy-six percent of respondents need additional help navigating Medicare and/or Medicaid options, 73% need help identifying private insurance options, and 53% need more assistance navigating manufacturer and/or advocacy patient assistance programs.

Conclusions: Many cancer programs have implemented baseline financial advocacy services, but financial advocates may be stretched thin dealing with a high demand for financial navigation services; learning their roles on the job with little training; and keeping up with a highly complex, rapidly changing landscape for coverage, reimbursement, and financial assistance. ACCC’s Financial Advocacy Services Guidelines, Boot Camp, and Toolkit help meet these needs. Future research efforts should convene financial advocacy stakeholders and further develop standards, competencies, and training.

Notes: Funding for this project was provided by Pfizer Oncology, Janssen, Johnson & Johnson, and Pharmacyclics. Data from this research were published in Oncology Issues in September 2020.

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Last modified: August 10, 2023

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