February 20, 2025
Author: Carol Wang, Ph.D., Director of Clinical Research, We Are Here
Cancer patients face significant financial challenges, especially when participating in clinical trials. Financial toxicity, the economic burden caused by cancer treatment costs, impacts patients’ ability to engage in trials that offer cutting-edge therapies. Despite the promise clinical trials hold for advancing cancer care, financial barriers—such as out-of-pocket costs, employment disruptions, and caregiving expenses—often prevent eligible survivors from participating. This article outlines these financial challenges and discusses how the We Are Here platform can help mitigate financial toxicity for cancer patients and their families.
Barriers to Clinical Trial Participation
Cancer patients encounter numerous financial barriers when attempting to join clinical trials. Although many trials cover the cost of the treatment being studied, other related expenses—such as transportation, lodging, and medical care not included in the trial—remain the responsibility of the patient. A study by Gilligan et al. (2018) reported that one-third of cancer patients in clinical trials experienced financial hardship due to these uncovered costs.
In addition to direct expenses, indirect costs such as lost wages and job instability significantly affect survivors and their families. Many patients have to reduce their work hours, take unpaid leave, or even leave their jobs to participate in trials (Ramsey et al., 2016). Caregivers face similar employment disruptions, often taking on additional financial burdens, which exacerbates the financial strain (Nekhlyudov et al., 2019). These financial pressures often lead patients to forgo clinical trial participation. In fact, some data suggests that less than 5% of adult patients with cancer enroll in a clinical trials (Chino & Zafar, 2019), limiting access to potentially life-saving treatments.
Indirect Costs and Employment Challenges
Beyond direct medical expenses, clinical trial participation often leads to indirect costs that further strain patients and their families. These include lost wages due to reduced work hours or job loss, increased caregiving responsibilities, and the need for additional childcare (Ramsey et al., 2016). Nekhlyudov et al. (2019) reported that cancer patients participating in clinical trials are more likely to experience long-term employment difficulties, which can jeopardize their financial stability and career progression.
Impact on Families
The financial toxicity experienced by cancer patients extends to their families, who often bear the brunt of the economic strain. Families often incur out-of-pocket expenses for travel, accommodation, and supplemental care services, which can deplete savings and increase debt (Lentz et al., 2019). Notably, those enrolled in early-phase oncologic clinical trials spent at least $1000 monthly on out-of-pocket costs (Huey et al., 2021), with patients from households earning less than $60,000 and living farther from the hospital experiencing worse financial toxicity. Emotional stress associated with financial uncertainty also affects family dynamics and overall well-being, compounding the challenges of coping with cancer (Gilligan et al., 2018). Addressing these financial barriers is crucial to ensuring equitable access to clinical research and improving overall cancer care outcomes.
Strategies to Mitigate Financial Toxicity
Several strategies can alleviate the financial burden of clinical trial participation. These include:
- Comprehensive financial counseling: Providing patients and families with access to financial advisors and support can help them navigate the costs associated with clinical trials and medical expenses, and help them identify available resources and assistance programs. We Are Here, an AI-driven platform that provides individually tailored cancer resource recommendations, connects patients and their care team with financial resources and grants to cover the out-of-pocket costs associated with participating in clinical trials.
- Patient assistance programs: Many pharmaceutical companies and nonprofits provide grants and financial assistance specifically designed to cover costs associated with clinical trial participation, such as transportation, lodging, and childcare. These programs make it more accessible for patients that encounter economic barriers to enroll in these trials (Chino & Zafar, 2019). In fact, in a 2022 survey of nearly 2000 patients and caregivers, 97% of patients reported that in addition to being compensated for their participation in a trial, being reimbursed for meals and transportation would appeal to them and help alleviate the challenge of out-of-pocket costs of trial participation (Elliott, 2022).
- Employment support services: Implementing programs that support patients in maintaining their employment or accessing paid medical leave can mitigate the indirect costs associated with participation in clinical trials (Ramsey et al., 2016). This includes more flexible work policies including remote work and paid leave. This flexibility helps reduce the indirect costs of lost wages and job instability for both patients and caregivers.
Financial toxicity poses a significant challenge for cancer patients participating in clinical trials, impacting both patients and their families. Addressing these financial barriers is essential in promoting equitable access to clinical research opportunities and enhance the overall quality of cancer care. Furthermore, given that financial constraints contribute to high dropout rates, ranging from 15% to 40% in some studies, effectively managing these burdens is essential for patient recruitment and retention (BioPharma Dive, 2023). We Are Here’s AI-driven technology, combined with empathetic real-time support from a human navigator, enables navigators to deliver personalized resource recommendations, connecting patients with relevant support services based on their unique financial needs and circumstances. Leveraging both technology and human connection mitigates the financial challenges associated with clinical trial participation by enhancing the cancer resource navigation process and helping patients focus on their health rather than financial stress.
About the Author
Dr. Wang is an accomplished social and health research scientist whose work focuses on community-based participatory methods and patient-centered outcomes. She earned her PhD from the University of Houston, where she was a Susan G. Komen Research Fellow at the University of Texas, MD Anderson Cancer Center, and completed a postdoctoral fellowship at MD Anderson through the CPRIT cancer prevention research training program. Her work has been funded by the American Association for Cancer Research, National Cancer Institute, American Psychological Association, and Susan G. Komen Foundation.
References
1Gilligan, A. M., Alberts, D. S., Roe, D. J., Skrepnek, G. H., & DeWolfe, C. C. (2018). Death or debt? National estimates of financial toxicity in persons with newly-diagnosed cancer. American Journal of Medicine, 131(10), 1187-1199.e5. https://doi.org/10.1016/j.amjmed.2018.04.028
2Ramsey, S., Bansal, A., Fedorenko, C., Blough, D., Overstreet, K., Shankaran, V., & Newcomb, P. (2016). Financial insolvency as a risk factor for early mortality among patients with cancer. Journal of Clinical Oncology, 34(9), 980-986. https://doi.org/10.1200/JCO.2015.66.8804
3Nekhlyudov, L., Mollica, M. A., Jacobsen, P. B., Mayer, D. K., Shulman, L. N., & Geiger, A. M. (2019). Developing a quality of cancer survivorship care framework: Implications for clinical care, research, and policy. Journal of the National Cancer Institute, 111(11), 1120-1130. https://doi.org/10.1093/jnci/djz070
4Chino, F., & Zafar, S. Y. (2019). Financial Toxicity and Equitable Access to Clinical Trials. American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting, 39, 11–18. https://doi.org/10.1200/EDBK_100019
5Lentz, R., Benson, A. B., 3rd, & Kircher, S. (2019). Financial toxicity in cancer care: Prevalence, causes, consequences, and reduction strategies. Journal of surgical oncology, 120(1), 85–92. https://doi.org/10.1002/jso.25374
6Huey, R. W., George, G. C., Phillips, P., White, R., Fu, S., Janku, F., Karp, D. D., Naing, A., Piha-Paul, S., Subbiah, V., Tsimberidou, A. M., Pant, S., Yap, T. A., Rodon, J., Meric-Bernstam, F., Shih, Y. T., & Hong, D. S. (2021). Patient-Reported Out-of-Pocket Costs and Financial Toxicity During Early-Phase Oncology Clinical Trials. The oncologist, 26(7), 588–596. https://doi.org/10.1002/onco.13767
7Gilligan, A. M., Alberts, D. S., Roe, D. J., Skrepnek, G. H., & DeWolfe, C. C. (2018). Death or debt? National estimates of financial toxicity in persons with newly-diagnosed cancer. American Journal of Medicine, 131(10), 1187-1199.e5. https://doi.org/10.1016/j.amjmed.2018.04.028
8Elliott, L. (2022). Boosting Clinical Trial Appeal in Patient Communities Part 1: Rare Patient Voice FLASH Webinar Overview. CiSRP. Retrieved from https://www.ciscrp.org/boosting-clinical-trial-appeal-in-patient-communities-part-1-overview/
9BioPharma Dive (2023). Patient-centered clinical trials improve recruitment and retention. Retrieved from https://www.biopharmadive.com/spons/patient-centered-clinical-trials-improve-recruitment-and-retention/647481/