FALL 2020 | RACE FOR CHILDREN ACT IMPLEMENTATION

Children’s Cancer Cause contributed to a white paper written by PRA Health Sciences in collaboration with CureSearch for Children's Cancer, on important role patient advocacy organizations play in pediatric plan development.

“In light of the RACE Act, patient advocacy organizations have a huge role in providing knowledge and experience as pharmaceutical companies develop pediatric clinical trials. This white paper is based on a series of interviews with stakeholders from some of the leading pediatric cancer patient organizations, academia and industry. The intent is to inform and provide a high-level orientation around the key barriers to readiness and critical success factors for companies navigating the pediatric oncology space in the wake of the RACE Act. The primary focus of this white paper is on how collaboration with patient organizations will be critical to overcoming the obstacles most companies will encounter.

Three of the case studies presented serve to illustrate how collaboration with patient organizations is tackling many barriers that industry will confront across a range of settings in pediatric cancer research. An overview of the pediatric patient advocacy landscape is also included — this serves as a high-level orientation around its unique dynamic that differs from and contrasts with adult cancer advocacy.

Together, the elements of this white paper aim to support collaboration between industry and patient organizations as a valuable strategy to ensuring readiness for the RACE Act.”

Read the full white paper →

SUMMER 2020 | GAO Report on Access to Follow-Up Care for Survivors

As policy authors and key champions of survivorship provisions in the Childhood Cancer STAR Act, Children’s Cancer Cause is keenly interested in following up with Congress and federal agencies to ensure full implementation of this landmark legislation. The most recent survivorship action is the release of the Government Accountability Office (GAO) report on barriers to care for childhood cancer survivors - Survivors of Childhood Cancer: Factors Affecting Access to Follow-up Care (PDF).

The original STAR Act language authorized the GAO report but it was ultimately stripped from the bill. With help from Children’s Cancer Cause, the bill’s authors worked to authorize the report through the appropriations process. With this report, there is now growing government acknowledgement about the unique needs and challenges facing childhood cancer survivors, a recognition that our community will need to leverage to make sure there are improvements in access and support.

The report identifies three main barriers to survivorship care: affordability, knowledge, and proximity.

Read the report →

SPRING 2020 | COVID-19 Feedback from Childhood Cancer Families

We surveyed families of children with cancer and childhood cancer survivors to find out some of the top issues and challenges you’re facing as the COVID-19 pandemic continues to impact daily living. The survey remains open, and we’re still listening and learning from you. As always, your feedback informs our policy work and helps us fight for impactful legislative solutions to the most pressing problems in our community during this challenging time.

Here’s some of what we’ve learned so far:

• Experiences regarding disruptions to treatment or care vary widely and are complicated. Approximately 30 percent of families we heard from reported experiencing a delay in care. Several parents of children in remission reported that regular scans and clinic visits have been pushed back. In one case, an annual checkup was delayed by a full six months.

• Two-thirds of the childhood cancer families we heard from reported experiencing a reduction in income as a result of COVID-19. Nearly 30 percent reported a loss of employment.

• The mental and emotional toll of COVID-19 is suffocating many childhood cancer families. One common thread that rings loudly through the survey responses is a sense of overwhelming anxiety, exacerbated by social isolation. Parents commonly referenced COVID-19 as a PTSD trigger.

Visit our blog for more →

SPRING 2019 | 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).

FALL 2018 | 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.​

Abstract from ASCO Meeting Library→
Poster Presentation →

A 17-Page Summary of Survey Results (PDF) →

FALL 2017 | 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: