Cost of Care Conversations Are Not Taking Place Between Cancer Patients and Health Care Team

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

WASHINGTON, Nov. 30, 2016 (GLOBE NEWSWIRE) -- 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 

About the Cancer Support Community
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. The organization includes an 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. 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. For more information, please call the toll-free Cancer Support Helpline at 888-793-9355, or visit So that no one faces cancer alone®


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