We all touch the newborn health ecosystem. The Newborn Coalition steers policy and makes recommendations for key changemakers – appropriate federal advisory committees, agencies, the U.S. Department of Health and Human Services and congressional committees.
Among the first targeted initiatives are:
- Supporting early detection and treatment of hidden diseases and disorders – specifically adding Critical Congenital Heart Disease – the nation’s number one killer of infants – to the national mandatory screening list for newborns. Provide funding to support scalable implementation of this and other new screening protocols recommended by the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC). Note: cCHD is the most common of all birth defects, affecting 1in100 babies born in the U.S.
- Assure that rural telemedicine and Health IT initiatives include a focus on pediatric newborn care. Note: 97% of America’s hospitals do not now include specialty services for medically unstable newborns. Newborns and infants represent the largest patient transfer population in healthcare.
- Continued support and enhanced funding for newborn health education – for the general population, rural and at-risk communities. This would include educating expectant and new families on newborn health and wellness, newborn screening, and other tools and services available to support newborn health and reduce morbidity and mortality.
More broadly, the coalition will be honing policy recommendations and promoting meaningful demonstration projects in the following areas:
- Advancing rural and telehealth initiatives that support cross-collaboration among neonatal specialists;
- Facilitating secure, real-time clinical health information exchange for the largest patient transfer population – newborns and infants;
- Crafting viable pilots and demonstration projects to establish a scalable, organic newborn electronic health record that grows with the child;
- Funded, accessible community-based educational outreach for families, in collaboration with healthcare providers, the private sector and public health community, to reduce mortality and morbidity while improving health outcomes for all newborns, particularly those in at-risk communities;
- Enacting policies that enhance the ability of medical device and pharmaceutical developers to innovate products geared toward the newborn and infant patient population.