Celebrating the Introduction of The Comprehensive Cancer Survivorship Act
The Comprehensive Cancer Survivorship Act (CCSA) was introduced in Congress yesterday in a landmark moment for cancer survivors, including the more than 500,000 survivors of childhood cancer in the United States.
Children's Cancer Cause spoke at a press conference on Capitol Hill to announce the legislation after working closely with Hill staff for the last several years on drafting the bill and helping to ensure pediatric cancer survivor provisions were included in its bipartisan introduction.
“Despite the increases in survivorship, the health system is generally unprepared for this special population of childhood cancer survivors. Survivors seldom receive explicit guidance, or a survivorship care plan. Providers and families are generally not aware 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,” said Steve Wosahla, CEO of Children’s Cancer Cause in his remarks. “Working with Congresswoman Debbie Wasserman Schultz and the other bill sponsors, we’re making an incredible step today for our population and all survivors in America.”
More than 95% of childhood cancer survivors will have a significant health related issue by the time they are 45 years of age. Despite many studies and reports over the past twenty years, there is no standard of care for the treatment of these individuals in the primary care setting even though they face significant and unusual health challenges, including hearing loss, osteoporosis, infertility, and cardiac late effects.
The Comprehensive Cancer Survivorship Act addresses care planning, transition, navigation, reimbursement, quality, and so much more. 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. You can read about all the provisions of the legislation in the Section-by-Section summary, or find the full bill text here.
Children’s Cancer Cause worked to ensure the inclusion of two provisions that directly address the unique needs of childhood cancer survivors:
Section 13: Promoting state innovations to ease transitions from active oncological care to the primary care setting for children with cancer through the creation of a stakeholder work group, a report from the Department of Health and Human Services, and the development of best practices based on the workgroup and report.
Section 14: Implementing a new Center for Medicare and Medicaid Innovation Medicaid pediatric survivorship care demonstration model, which has been a legislative priority of Children's Cancer Cause for the past several years.
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 monumental achievement of introducing it before the 117th Congress comes to a close. We look forward to working with the bill leads on passage of these provisions into law.
You can help spread the word about this legislation to Congressional offices. Your voice as a constituent is incredibly powerful. Click the button below to send your Members of Congress a message seeking their co-sponsorship of this bipartisan legislation.