Cancer Support Community study shows barriers Americans with cancer face in access and coverage


WASHINGTON – (Nov. 30, 2016) – A study released today shows that despite the rising complexity and cost of cancer care, few patients are having comprehensive care conversations with their health care providers, including conversations about costs. Further, only half of patients receive the psychosocial care they need to help them navigate the illness. The result is delays in care, increased out of pocket costs, lack of adherence to treatment, and potential negative overall patient outcomes.


The report, based on a survey of 1,046 people who have had cancer, demonstrates several key findings that offer insight into the patient experience with insurance across all coverage categories.


“Despite health reform efforts to provide more comprehensive care solutions to patients, some patients today are experiencing treatment delays and increased out of pocket costs, often related to cost containment strategies they do not understand well,” said Kim Thiboldeaux, CEO of the Cancer Support Community.


Particular findings of interest include that when making decisions about their cancer treatment, 68 percent of patients did not talk about costs with their health care team. Additionally, 25 percent of patients said they are uncertain that they received the care they needed, and 43 percent of patients reported that over the past year, their out of pocket health care costs have been larger than expected.


Additional findings include:


  • 22 percent of patients chose not to get recommended health care services (tests, treatment and prescription drugs) because of high out-of-pocket costs.


  • 73 percent of patients did not know the term “clinical pathways,” with 88 percent reporting not knowing or not being sure if their treatment was based on a clinical pathway.


  • Among those who reported a step therapy mandate or prior authorization requirement from their insurance company, up to 50 percent reported delays in starting treatment, changes to treatment decisions, and unexpected out-of-pocket costs. Over half had to wait 7-30 days to receive treatment. One person reported waiting 30-60 days.
  • More than half (53.3%) of patients reported not receiving social and/or emotional support as a part of their cancer care; more than 70 percent said they would have liked to receive these services.


  • Among the top concerns about health insurance, patients cited high out of pocket costs for services, high deductibles, high premiums, and high copays for medications.


The full report is available online at www.CancerSupportCommunity.org



How this affects our local community?


Gilda’s Club Quad Cities, an affiliate of Cancer Support Community (CSC), currently is offering Frankly Speaking About Cancer: Coping with the Cost of Care eLearning Course.  Frankly Speaking About Cancer® is the Cancer Support Community’s landmark cancer education series that provides trusted information on a variety of topics important to people affected by cancer.  This latest series is a self-paced online course which provides a practical guide to navigating the numerous and complex challenges of managing the cost of cancer care.  This educational course is FREE and all you need is a computer or tablet with internet access.  “We are optimistic that by creating an educational program that can be completed at the time when it is most needed, more patients will get the support they need around financial issues, “said Melissa Wright, Program Director for Gilda’s Club Quad Cities.


A supplemental workbook is provided and you can easily obtain valuable information from the comfort of your own home or anywhere you access the internet.


To register and complete the course go to: www.gildasclubqc.org/webinars

For questions, contact Gilda’s Club at 563-326-7504 or kelly@gildasclubqc.org


About the Cancer Support Community and Gilda’s Club


As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC), including its Gilda’s Club affiliates, is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. CSC achieves its mission through three areas: direct service delivery, research and advocacy. Gilda’s Club Quad Cities is one of the CSC’s international network of Affiliates that offer the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone through CSC. The Research and Training Institute conducts cutting-edge psychosocial, behavioral and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington, D.C. and across the nation.