Our 2023-2024 Policy Priorities

Accelerate childhood cancer research and development of new treatments

Getting drug companies to test targeted therapies early in kids has been a goal for Children’s Cancer Cause since our founding in 1999. In 2022, the Prescription Drug User Fee Act (PDUFA) was reauthorized, legislation that provides the FDA with the necessary resources to help bring to market new medicines for patients. While FDA is allowed to assess civil monetary penalties for late post-market study requirements for adults, the law currently forbids FDA from doing the same for children. This is an inequity that must be addressed, and we are proud to endorse the Innovation in Pediatric Drugs Act of 2023, bipartisan legislation that strives to achieve that equity.

As we continue to pursue this priority, we’re working on how U.S. efforts in advancing drug development can align with current and evolving international initiatives, including the ACCELERATE platform based in Europe.

Identify barriers to treatment and to quality survivorship care

Children's Cancer Cause worked closely with Hill staff for the last several years on drafting The Comprehensive Cancer Survivorship Act (CCSA) and helping to ensure pediatric cancer survivor provisions were included in its bipartisan introduction in December 2022. This legislation 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 and is a major focus of our work in the 118th Congress.

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

In the 118th Congress, we will 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.

We will also seek passage of the bipartisan Clinical Trial Coverage Act, which would require insurers to cover out-of-network routine care for clinical trial participants if no in-network provider is available. This provision would ensure adult and child patients can access clinical trials without paying significant out-of-pocket costs for physician services.

Secure strong federal funding in the fight against childhood cancer

Childhood cancer research is almost entirely dependent on federal funding through the National Institutes of Health (NIH). Ensuring strong funding for research is a core focus of our advocacy work.

We will continue to advocate for increased research funding. Much of our appropriations work is in collaboration and through our membership in coalitions such as One Voice Against Cancer (OVAC), the Alliance for Childhood Cancer, the Cancer Leadership Council, and others.

Specific to childhood cancer, we will seek full funding for the Childhood Cancer Survivorship Treatment, Access and Research (STAR) Act and the Childhood Cancer Data Initiative. The STAR Act was reauthorized for an additional five years of funding – through fiscal year 2028 – but it still requires Congress to appropriate those funds each year.

We will also fight for pediatric and adolescent and young adult cancers to again be included as priority research topics for the Department of Defense’s Peer Reviewed Cancer Research Program.

We’ll also push for passage of the Gabriella Miller Kids First Research Act 2.0, which supports the Kids First Pediatric Research Program at the NIH, funding much-needed research on rare childhood cancers, birth defects, and other rare pediatric diseases. Funding for the 2014 research program expires in Fiscal Year 2023. The Kids First 2.0 legislation will ensure long-term continuity of that life-saving research.

This list is not a comprehensive account of all policy work we will engage around in the 118th 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 118th Congress are extensive, as policy leaders we are always prepared to pivot to respond to emerging issues and challenges.