Our 2025-2026 Policy Priorities

Affect policies and advocate for research and payment that will lead to improvements in quality post-treatment care.

The Comprehensive Cancer Survivorship Act (CCSA) aims to address the entire survivorship continuum of care for this deadly disease. To adequately treat the estimated half-million U.S. childhood cancer survivors, we must provide better survivorship care as survivors transition out of the oncologic setting into primary care and face a lifetime of health issues resulting from their treatment.

Children's Cancer Cause worked closely with Hill staff for the last several years on drafting language for this legislation and helping to ensure pediatric cancer survivor provisions were included in its bipartisan introduction in the 118th Congress. This bill would promote 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. The bill would also encourage the development of a Center for Medicare and Medicaid Innovation Center pediatric survivorship care demonstration model, which has been a legislative priority of Children's Cancer Cause for the past several years. 

Children's Cancer Cause has long advocated the creation of a standard of care for survivorship care planning to address this transition. This bill would take important steps to help further this goal. We are working for reintroduction of this bill during the 119th Congress. 

Other survivorship-related policy goals include:

• Exploring whether the Department of Health and Human Services Center for Medicare and Medicaid Services might implement a pediatric survivorship demonstration program;

• Expanding insurance coverage solutions for survivors are advanced through work with payers, federal legislators and regulators;

• Pursuing adoption of the Children’s Cancer Cause’s Childhood and Survivor Transition (CAST) model by a payer, government agency or private foundation as a demonstration program; and

• Securing report language in appropriations that addresses supporting care for survivorship of childhood cancer patients. 

Impact public policy to accelerate innovation in the discovery, development, and availability of safe and effective therapies for children with cancer 

The Give Kids a Chance Act (H.R. 1262) is comprehensive, bipartisan legislation that aims to remove barriers in pediatric drug development and speed therapies to children who need them by incentivizing pediatric research and making needed changes to pediatric drug laws.  

Specifically, this bill contains provisions from these four bills that were cut in the 118th Congress: 

• The Innovation in Pediatric Drugs Act, to ensure pediatric studies for possible new treatments are completed on time by making needed improvements to the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA); 

• The Creating Hope Act, which incentivizes critical pediatric research by expanding the FDA priority review voucher program. Its funding expired at the end of 2024 due to Congressional inaction, and the Give Kids a Chance Act of 2025 would reauthorize the voucher program until 2029; 

• The Give Kids A Chance Act, which allows researchers to study combinations of new cancer drugs, potentially unlocking new cures for kids; and 

• The RARE Act, which clarifies Congress’ interpretation of the Orphan Drug Act to ensure pediatric drug research and development isn’t locked out from newly approved drugs that don’t impact pediatric populations. 

Learn more about this bill and take action.

Other drug development-related policy goals include:

• Securing FDA enactment of a regular assessment evaluating the effectiveness of the RACE Act, and an increase in the number of pediatric studies and compounds submitted by industry;

• Securing a focus on drug development for pediatric cancer through the inclusion of report language in annual appropriations bills;

• Laying the groundwork to incorporate provisions favorable to childhood cancer in the 2027 Prescription Drug User Fee Act (PDUFA);

• Securing funding of at least $30 million for the Childhood Cancer STAR Act and $50 million for the Childhood Cancer Data Initiative; and

• Joining our partners in support of strong funding for biomedical research at levels agreed upon by the community.   

Develop institutional, financial, and geographic policy solutions to care barriers

In the 119th Congress, we seek support and passage of the bipartisan Accelerating Kids’ Access to Care Act, which will improve access to care for children with complex medical conditions by streamlining the Medicaid provider screening and enrollment process when a child has to seek care in another state. This bill was introduced in February 2025 in the House as H.R. 1509. Learn more about this bill and take action.

We also join with community allies and coalition partners in protecting Medicaid and the Children’s Health Insurance Program (CHIP), which provide quality, affordable healthcare coverage for over 80 million people, including over 37 million children. For children with cancer, Medicaid plays an especially critical role as a safety net. In many states, a child is eligible for Medicaid and CHIP coverage upon receiving a childhood cancer diagnosis, emphasizing the need for timely access to quality, uninterrupted care. Research has shown that patients who experience disruptions in their Medicaid coverage are more likely to have advanced-stage disease and worse survival rates than patients without disruptions. Survival rates have also been shown to improve in Medicaid expansion states relative to non-expansion states, particularly those living in lower-income areas. We strongly oppose changes to the Medicaid program that would restrict access, cut needed funding to states, create burdensome red tape, or reduce the quality or availability of services for children or their families.  

Secure strong federal funding in the fight against childhood cancer

For children with cancer, federally funded intramural and extramural research is the doorway to new, less toxic treatments. Due to the smaller patient populations, drug companies do not have as strong an incentive to invest in new childhood cancer research and development as they do for their adult counterparts. The status quo often favors existing childhood cancer treatments, despite their long-term health impacts. As a result, the onus is on the federal government to fill the gap. Research institutions around the country rely on grants from the National Institutes of Health (NIH) and the National Cancer Institute (NCI) to find new discoveries, treatments, and cures.

The critical and innovative intramural research being done on campus at NIH and NCI has saved countless lives and must continue to be fully funded and unimpeded in its mission to improve the lives of childhood cancer patients, survivors, and families. The programs supported by the NCI - including the Childhood Cancer STAR Act, the Childhood Cancer Data Initiative, and the Department of Defense’s Peer Reviewed Cancer Research Program (PRCRP) - are helping to ensure that progress in childhood cancer research, treatments, and survivorship care is achieved.

We join with the leading national cancer organizations in requesting strong funding for NCI and opposing any changes to NIH or NCI that threaten their long history of stable, uninterrupted, and robust support. Read our February 2025 statement on the importance of strong funding for NCI research.

This list is not a comprehensive account of all policy work we will engage around in the 119th Congress. For example, we continue to seek opportunities – alongside our coalition partners – to further explore specific health inequities facing children and survivors from minority populations and underserved communities. And while our priorities for the 119th Congress are extensive, as policy leaders we are always prepared to pivot to respond to emerging issues and challenges.