Financially, a cancer diagnosis can be devastating. Lost wages, expensive prescriptions, and big hospital bills can lead to patients draining their savings, missing bill payments, or even losing their homes. Some go bankrupt. Cancer patients have talked about this issue of financial toxicity for years.

Financial toxicity is also increasingly the subject of talks at major cancer conferences, and it has become a budding area for research. The issue is particularly important related to clinical trials, which can be a financial burden if certain procedures aren’t covered by insurance, or if long periods of treatment and follow-up lead to significant travel expenses. Last month, the Coalition for Clinical Trial Awareness convened a policy panel, “Overcoming Financial Barriers in Clinical Trial Participation” in Washington, DC, to discuss trial expenses like parking, childcare, and meals away from home. The panel also discussed resources available to help trial volunteers recoup some of these costs.

I’m proud that SWOG, and its members, are financial toxicity pioneers. Drs. Scott Ramsey and Veena Shankaran, SWOG investigators at Fred Hutchinson Cancer Research Center, didn’t write the book on the issue – but they did write the
financial toxicity section of the National Cancer Institute (NCI) Physician Data Query or PDQ, the online cancer database.

Here is a summary of some of our biggest and best efforts on the issue:

  • Dr. Shankaran opened S1417CD in 2016, the first financial toxicity trial in the NCTN. The trial, which closed to accrual in February, tested a multi-part questionnaire to see if it can effectively assess just how significant the financial burden of cancer treatment is for patients with metastatic colorectal cancer. At the recent ASCO meeting, Shankaran presented an abstract that showed S1417CD accrued faster than expected – despite requiring sensitive information like credit data and Social Security numbers. In February, Shankaran and her team will complete follow up, and we expect to publish primary results shortly thereafter in 2020.
  • SWOG patient advocates are doing great work in this area. Lymphoma advocate Hildy Dillon created a tip sheet for clinical trial staff that they can use to help patients who enroll on S1826, a soon-to-be-activated lymphoma trial, manage out-of-pocket trial expenses. Geared to physicians and research staff, the sheet offers ideas on how to help patients anticipate trial costs, find resources that can help, and reduce barriers to participating in clinical trials. It’s now being adopted by SWOG patient advocate chair and GU advocate Rick Bangs for a bladder cancer trial. With support from The Hope Foundation for Cancer Research, the SWOG Patient Advocate Committee is also creating a pilot program that will reimburse patients for trial-related travel costs. If it’s successful, the committee will explore rolling it out more broadly. Bangs, along with SWOG advocates Jack Aiello and Flo Kurttila, are working on that Hope-funded pilot.
  • Using our deep dataset, Joe Unger, PhD, a SWOG biostatistician and health policy researcher, is exploring whether some demographic and socioeconomic subgroups of patients – including those with Medicaid or no insurance – have more limited benefits of positive treatments. Unger analyzed data from 16 SWOG randomized, phase III treatment trials that resulted in an overall survival benefit for patients in the experimental arm of the study. Unger has results and his abstract has been accepted for an oral presentation at the ASCO Quality Care Symposium, to be held in September in San Diego. Unger is currently seeking outside funding for a larger-scale study.
  • SWOG patient advocate Christabel Cheung, PhD, serves on the adolescent and young adult (AYA) committee and is an assistant professor of social work at the University of Maryland. She is the principal investigator of a university-funded study focused on the financial impact of cancer among patients ages 18-39. Cheung and her team are developing a measure of financial well-being for military AYA cancer patients sensitive to the unique ways that they can experience financial hardship, which may include having difficulty paying for basic necessities, financing fertility treatments, paying college tuition or loans, and life-long economic disparity due to delays in career advancement. Results are expected next year. In addition, Cheung is working with a team led by John Salsman, PhD, a health policy professor at Wake Forest School of Medicine, on a systematic literature review focused on the financial burden of cancer.

I am proud of the work SWOG does in this area. Proof that not all research has to center on whether drug X works better than drug Y.