Congressional Research Service - This bill amends the Public Health Service Act to permit the National Institutes of Health (NIH) to provide support to collect the medical specimens and information of children, adolescents, and young adults with cancer to improve the understanding of these cancers and of the effects of treatment.
The national childhood cancer registry is reauthorized through FY2020 and revised to require the Centers for Disease Control and Prevention to award grants to states to improve tracking of childhood cancers.
This bill amends the Federal Food, Drug, and Cosmetic Act to require manufacturers and distributors of investigational drugs to publish policies for compassionate use of the drugs.
The Department of Health and Human Services must: (1) support pilot programs to develop or study models for monitoring and caring for childhood cancer survivors throughout their lives, (2) convene a Workforce Development Collaborative on Medical and Psychosocial Care for Pediatric Cancer Survivors, (3) establish a task force on standards for high-quality childhood cancer survivorship care, and (4) carry out a demonstration project to improve care coordination as childhood cancer survivors transition to adult care.
The NIH must support research on: (1) outcomes for, and barriers faced by, pediatric cancer survivors within minority or medically underserved populations; and (2) follow-up care for pediatric cancer survivors, including research on the late effects of cancer treatment and long-term complications.
The Government Accountability Office must make recommendations to address barriers to childhood cancer survivors obtaining and paying for adequate medical care.