The uncertain fate of the National Institutes of Health (NIH) pediatric research portfolio

Background: The amount of federal dollars allocated to improving the health of our pediatric population can serve as an indicator of the priority placed on child well-being. Although Congress has established novel mechanisms that marginally increase pediatric research funding, the pediatric research portfolio is facing an increasingly uncertain fate. Methods: This work examines pediatric, perinatal and pediatric research initiative (PRI) spending using data collected by the NIH that uses the novel research, condition and disease categorization system. Further, this work reports on recent policy developments in pediatric biomedical research and offers recommendations to insulate this portfolio from future uncertainty. Results: Federal support for pediatric research has declined with average annual growth rates of NIH pediatric spending dropping from 12.8% (FY 1998-2003) to 1.7% (FY 2004-2015). After taking into account Biomedical Research and Development Price Index growth, the pediatric research portfolio’s purchasing power has declined by 15.9% (FY 2004-2015). Conclusion: Federal support for pediatric biomedical research has plateaued in nominal terms and declined significantly in real terms. Future congressional action will be necessary to protect gains and to expand the capacity of the pediatric portfolio.