Congressional Leader Welcomes Newborn Coalition

Sept. 16, 2010 - PRLog -- Washington, DC - The Newborn Coalition, an advocacy group for America’s newest, most vulnerable citizens and their families, announced the organization’s launch at a press briefing on September 15, led by longtime champion of maternal and child health issues, Rep. Betty McCollum (D-MN), and attended by key stakeholders in pediatric healthcare from federal agencies, non-profits, and the public and private sector health IT communities.

Each year in the U.S., more than half a million babies – 1 out of every 8 – are born prematurely. An estimated 28,000 children die before their first birthday - 1/6 of those from congenital heart disease. America’s infant mortality rate, already one of the highest in the industrialized world, is rising for the first time since the 1950s.

Joining McCollum were pediatric health advocate Darshak Sanghavi, M.D., Chief of Pediatric Cardiology, UMass, and Joel White, Executive Director of the HealthIT Now Coalition. They emphasized the importance of an advocacy and policy conduit focused specifically on the needs and challenges faced by newborns.

The Newborn Coalition includes lawmakers, health industry representatives, governmental agencies, non-profits, educators and child advocates committed to shaping a technology-driven federal agenda to improve outcomes for newborns via education, health care innovation and excellence, early identification/prevention, and rural health and telemedicine. "The broad range of expertise and insight of these individuals will ensure the federal portfolio affecting newborns continues to advance - and the health and well-being of newborns consistently improves," said Jim Bialick, executive director and board member. "The committee's focus on the newborn ecosystem and applicable research and pilot programs across federal agencies will be valuable in identifying the best possible opportunities to improve health outcomes for the youngest children."

The Coalition will be working immediately to advance policies, care and outcomes for the youngest, most fragile citizens and envisions broad public-private partnerships that engage like-minded organizations, non-profits, the White House, the U.S. Department of Health and Human Services, HRSA, the NIH, CDC and others to improve outreach and outcomes for newborns through infancy.

Among the coalition’s first targeted initiatives:

•   Supporting early detection and treatment of hidden diseases and disorders. Specifically adding Critical Congenital Heart Disease (CCHD) – the most common of all birth defects, affecting 1 in 100 babies born in the U.S., and 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).  
•   Assuring that rural telemedicine and Health IT initiatives include a focus on pediatric newborn care. Newborns and infants represent the largest patient transfer population in healthcare, yet 97% of America’s hospitals do not currently include specialty services for medically unstable newborns.
•   Advocating 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.

The Coalition’s growing interagency/public/private advisory committee will develop and coordinate a strategic federal policy agenda on health and research issues related to newborns. The committee will develop recommendations for appropriate federal advisory committees, agencies, the U.S. Department of Health and Human Services and appropriate congressional committees.

About the Newborn Coalition
The Newborn Coalition (http://www.newborncoalition.org and newborncoalition.com) serves as an unrelenting advocate for the newest, most vulnerable citizens and their families through partnerships that enhance health care delivery and health IT impact on newborns and families. Co-founded by the mother of a baby diagnosed at 40 hours old with congenital heart disease, the coalition began taking shape in 2009, when several experts in pediatric health and technology cultivated common ground among a wide range of stakeholders invested in the health, medical safety and wellness of young patients – specifically newborns. The Newborn Coalition is already making a national imprint that will improve understanding of newborn health and risk factors while helping increase access to quality care, improve outcomes and craft sustainable, scalable practices for public health, academia, community based organizations, medical providers, and national health organizations.