Comprehensive Cancer Survivorship Act is a Landmark Bill for Childhood Cancer Survivors
The unfortunate reality is that many survivors of childhood cancer will face a multitude of health issues throughout their lifetime due to the treatment they received. In fact, over 95% of childhood cancer survivors are burdened with a significant health-related issue by the time they are 45 years of age.
Despite many studies and reports over the past twenty years documenting the significant health challenges facing this population, including hearing loss, osteoporosis, infertility, and cardiac late effects, there is still no standard of care for their long-term treatment in the primary care setting.
Since our founding, Children’s Cancer Cause has made survivorship a key pillar of our work toward our vision of a long, healthy life for every child with cancer. We’re very encouraged with the recent reintroduction of the Comprehensive Cancer Survivorship Act (CCSA) in both the House and Senate. This bill represents a landmark moment toward improved survivorship care to better meet the unique needs of childhood cancer survivors.
The Comprehensive Cancer Survivorship Act (H.R. 4363 in the House and S. 2213 in the Senate) addresses care planning, transition, navigation, reimbursement, quality, and the entire continuum of care. It aims to address gaps in survivorship care and develop desperately needed standards to improve the overall patient-centered quality of care and navigation needs of the nation’s 18 million cancer survivors of all ages.
We’re particularly encouraged that the bill has two childhood cancer provisions that Children’s Cancer Cause helped develop and provided technical feedback on.
In our remarks at the Capitol upon the bill’s original announcement in December - see video on the right - we talked about the systemic challenges of meeting the needs of the nation’s approximately 500,000 childhood cancer survivors.
Despite the increases in survivorship, there is widespread agreement that the health system is generally unprepared for this special population of survivors. Too often, survivors don’t receive explicit guidance - or a survivorship care plan - upon the completion of treatment. Providers and families are generally not adequately informed about the future needs of survivors, and this can be especially true for childhood cancer survivors who were often too young to remember the specifics from when they were treated.
As this generation of childhood cancer survivors completes treatment, the health system must be better equipped to meet their specialized needs. We believe the pediatric-specific provisions in the bill go a long way toward recognizing the needs of this population. These provisions include:
Section 13: Promoting State Innovations to Ease Transitions to the Primary Care Setting for Children with Cancer
This section directs the Secretary of HHS to convene a stakeholder group of representatives of childhood cancer advocacy organizations, Medicaid beneficiaries, providers with childhood cancer expertise, the National Association of Medicaid Directors, and other relevant representatives to develop best practices for states to ease transition from active oncological care to primary care of child or adolescent with cancer. The Secretary will create a report and work with states on innovative strategies to help children and adolescents with cancer who transition from oncological care to primary care.
Section 14: Childhood Cancer Demonstration Model and Standard of Care
This section amends the Centers for Medicare & Medicaid Services demonstration authority statute where there is a list of over 25 models that the Center for Medicare and Medicaid Innovation is encouraged to implement by including a new Medicaid pediatric survivorship care demonstration model. The model would promote a standard of care to manage the transition of children from active oncology care to primary care through the promotion and use of survivorship care plans.
Please join us in thanking Representative Debbie Wasserman Schultz (FL-23), Rep. Brian Fitzpatrick (PA-1), Rep. Mark DeSaulnier (CA-11), Senator Amy Klobuchar (MN), and Sen. Ben Cardin (MD) for championing this bill and the needs of our community.
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