Infant Health Summit Convenes Providers, Advocates and Experts to Discuss Access Issues; Zika Virus

RSV, human donor milk, nutrition, post traumatic stress disorder and post-partum depression to be discussed


WASHINGTON – On Thursday, September 15 the Institute for Patient Access and the National Coalition for Infant Health will host the 2016 Infant Health Policy Summit in Washington, DC, to explore patient access issues facing vulnerable premature infants and their families. The summit, held at the Ronald Reagan Building and International Trade Center, will feature remarks by Representative Katherine Clark (D-Mass) and Coleen Boyle, PhD, director of the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention and a member of the Zika Virus Response Team’s Pregnancy and Birth Defects Task Force. The summit’s keynote speaker, Kelley French, is an award-winning journalist, Pulitzer Prize finalist, author, and mother of a premature infant born at 23 weeks. 


Summit discussions will include: (1) Preemie Nutrition: A Discussion About Human Milk Quality & Safety; (2) The “Gap Baby”: How Preemies Are Unprotected From RSV (Respiratory Syncytial Virus); (3) PPD & PTSD: Impact Of The NICU On Parents, Families, And Staff; and (4) Nutrition Dilemmas Facing Expectant and New Moms. Attendees will also receive an up-to-the-minute briefing on Zika Virus from CDC’s Dr. Coleen Boyle, a key member of the Zika response task force.


Summit attendees include health care providers, congressional leaders and staff, representatives from national nursing and physician organizations, and national and regional preemie parent organizations.



“Premature infants are a fragile and often voiceless population who face serious health challenges and barriers to accessing physician recommended therapies. Their families carry a disproportionately heavy emotional and financial burden. This summit will educate policymakers and the media and bring awareness to the issues these most vulnerable babies faces.” 


Experts include: Maushumi Assad, MD, MPH, Connecticut Children’s Medical Center; Dawn Bolyard, CNS, Mercy Children’s Hospital; Deb Discenza, Founder, Preemie World; Scott Eaker, VP, Quality and Regulatory Affairs, Prolacta Bioscience; Mitchell Goldstein, MD, Loma Linda University Children’s Hospital; Kelli Kelley, Founder, Hand to Hold; Leonard Krilov, MD, Winthrop University Hospital; Cheryl Milford, Ed.S., Educational Psychologist; Raylene Phillips, MD, Loma Linda University Children’s Hospital; Suzanne Staebler, NNP, Emory University; Susanne Tropez-Sims, MD, Meharry Medical College; Stephanie Vaughan, Co-founder and President, The Morgan Leary Vaughan Foundation; Elizabeth Ward, MS, RD.


Every year, 450,000 babies – one in every nine – are born premature. Prematurity is the leading associated cause of infant death during the first year of life. Premature infants who do survive often face lifelong disabilities, including visual and hearing impairments, feeding and GI complications, cerebral palsy, chronic lung disease, and learning and other mental disabilities. Parents of premature infants often face emotional and financial struggles, with the economic toll of premature care on the nation’s health care system totaling more than $26 billion each year. 


The summit, sponsored by the Institute for Patient Access, Astra Zeneca, Prolacta Bioscience, and the National Fisheries Institute, begins on Thursday, September 15 at 8:30am. 


The summit is open to the press. Press interested in attending should RSVP to Susan Hepworth at no later than Wednesday, September 14.



Institute for Patient Access               

National Coalition for Infant Health