POLICY RESEARCH: Briefings, surveys & reports that inform our policy work on Capitol Hill.
Patient Needs Survey
In 2017 and 2018 we conducted a survey in partnership with the Patient Advocate Foundation. Here, we round up the key findings from nearly 450 caregivers and survivors that we surveyed: One-Pager (PDF).
Financial Barriers to Care: A Survey of Families
In October 2018, we shared results from a joint survey conducted last year by the Children's Cause and the Patient Advocate Foundation (PAF) at the ASCO Quality Care Symposium. The survey sought to identify financial challenges in access to care, such as insurance barriers, coverage limitations and denials, high copays and extraordinary out-of-pocket costs.
A total of 343 respondents completed the online survey, evenly split among caregivers and survivors.
Among caregivers, one-third reported insurance denials for treatment, and 44% reported some level of financial hardship. Among the 44% of respondents reporting financial hardships, 4-in-10 had annual out-of-pocket costs exceeding $5,000. Beyond medical expenses, respondents identified employment and transportation costs, with 87% reporting compromised work schedules and over half reporting trouble getting their child to and from appointments.
For survivors, 27% reported not receiving follow-up care at a late effects clinic, with 1-in-4 reporting that their cancer care impacted their ability to pursue higher education and 30% reporting that the cost of their medical care impacted their career course or job choice.
In the fall of 2018, we completed another round of surveying families and will be incorporating this new data to build upon what we learned last year and continue to refine our policy efforts accordingly.
Abstract from ASCO Meeting Library→
Poster Presentation →
Hill Briefing on Access Issues
In September 2017, Children’s Cause and the American Cancer Society Cancer Action Network (ACS-CAN) held a panel discussion on Capitol Hill on issues affecting childhood cancer patients and survivors, including how they access coverage and receive treatment. The recording is available here:
Survey of Patient Needs
In Spring 2017, we surveyed over 340 parents and survivors to better understand the financial hardships and insurance challenges facing childhood cancer families. Key findings from this joint initiative of the Children's Cause and the Patient Advocate Foundation include:
One-third of parents reported that their child's treatment was denied by their health insurance carrier at some point in time.
Among parent/caregiver respondents, 6 in 10 reported experiencing a financial hardship over the past 12 months due to the cost of their child's medical care. Of those who have experienced a recent hardship, over one-third categorize their hardship as "extremely severe, unable to manage."
Notably, 87% of parents surveyed reported difficulty maintaining a regular work schedule over the past year due to their child's treatment demands. Nearly half - 46% - reported that one or two family members stopped working to care for their in-treatment child over the past 12 months.
One-in-four survivors report that the cost of their cancer-related medical care impacted their ability to pursue the higher education of their choice. 30% of surveyed survivors said the cost of their medical care has impacted their career course or job choice.
Pediatric Oncology Workshop
On October 27, 2016, Children’s Cause for Cancer Advocacy (CCCA), the Pharmaceutical Research and Manufacturers of America (PhRMA), and the Biotechnology Innovation Organization (BIO) convened a diverse group of key stakeholders and experts in pediatric oncology drug development to discuss scientific and operational challenges of developing new drugs for children with cancer and to explore potential approaches to solving them.
For the first time, this workshop brought together key stakeholders who expressed an unprecedented, collective commitment to work together for the benefit of children with cancer. This workshop marks a new phase in multi-stakeholder engagement and presents an exciting opportunity for collaboration to advance the environment for the development of new and better therapies for treating children with cancer.
September 2016 marked the release of a joint report from the American Cancer Society and Alliance for Childhood Cancer, which compiled the latest information related to pediatric cancer, including statistics and trends, a current list of drugs used to treat pediatric cancers, ongoing pediatric cancer clinical trials, and research funding levels.
The report, “Translating Discovery into Cures for Children with Cancer: Childhood Cancer Research Landscape Report” marks the first time that statistics and information about childhood cancers have been brought together with a critical analysis of challenges and opportunities related to pediatric cancer prevention and treatment.
CCCA's president Susan Weiner sat on the 7-person Steering Committee to help develop this critical report.