Conquer Childhood Cancer STAR Act
Expanding Research and Improving Treatment for Children with Cancer
Brain tumors are the leading cause of cancer-related death for children under 14 years old. Nationally
an estimated 4,620 or more children are diagnosed with a brain tumor each year. There is currently
no cure and for many types of childhood brain tumors there is no standard of care treatment. There
is a critical need for more research to be funded through the National Institutes of Health and for a
greater emphasis on the development of new treatments through clinical research. At the same time,
childhood brain tumor patients that are not eligible for clinical trials should be able to understand
in a timely manner if they can access potential new medicines through expanded access programs
offered by biopharmaceutical companies. Pediatric brain tumor survivors also need care models that
will appropriately help their long-term physical and psycho-social needs. Yet such services are sorely
underfunded. Finally, there is a need to improve childhood cancer expertise at the National Cancer
Institute so that it can better address the scientific challenges and opportunities.
National Brain Tumor Society helped craft and advocate for the introduction of the Conquer Childhood
Cancer Survivorship, Treatment, Access, Research (STAR) Act. NBTS believes the following provisions
in the Conquer Childhood Cancer STAR Act will help stimulate more effective pediatric brain tumor
research and lead to better treatments that extend life and improve patients’ quality of life:
- Funding State-Level Pediatric Epidemiology Efforts: Supports the authorization of grant awards
to state cancer registries, which would better track disease rates in children and help researchers
understand trends in pediatric cancer prevalence, incidence and survival.
- Understanding Life Beyond Childhood Cancer: Provides authority to the Secretary of the U.S.
Department of Health and Human Services to make grants to pilot programs, which will develop
models to study childhood cancer survivors throughout their lives.
- Expanding Research: Requires the Director of the NIH to make grants to entities to conduct research
that addresses both the physical and the psychological needs of childhood cancer.
- Requiring Transparency for Expanded Access Policies: Requires more clarity to the process
for parents to seeking compassionate-use waivers (Expanded Access Protocol) for children with
aggressive cancers, so that they can access potentially life-saving treatments outside of clinical trials.
Congress Can Help
Urge your Members of Congress to cosponsor the Conquer Childhood Cancer STAR Act