‘Preemie Matters’ Summit Assembles Health Care Providers, Experts and Members of Congress to Explore High-Risk Infant Health Issues

The Institute for Patient Access and National Coalition for Infant Health Host Washington, DC Summit with Keynote Speaker Nancy Grace

WASHINGTON, JUNE 18, 2015 – On June 24-25 the Institute for Patient Access and the National Coalition for Infant Health will host the Preemie Matters National Policy Summit in Washington, DC, to explore access challenges facing the nation’s premature infants and their families.  Held at Union Station and the Andrew W. Mellon Auditorium, the policy summit will feature remarks by Rep. Jaime Herrera Beutler (R-Wash.) and Rep. Katherine Clark (D-Mass.), as well as a keynote luncheon address by Nancy Grace, CNN host and mother of premature twins.

“Each year in the United States premature infants face grave and far-reaching health challenges, generate jaw-dropping health care costs and struggle to access the treatment they need,” explained National Coalition for Infant Health Medical Director Mitchell Goldstein, MD.  “The Preemie Matters summit will provide the foundation for a national strategy to guide the coalition in educating policymakers, the public, and media on issues regarding access and appropriate clinical care standards.”

Top neonatal experts from around the country will lead summit discussions about: (1) protecting infants from infectious disease; (2) optimal health and the nutrition of preterm infants; (3) what preemies and their parents need while in the Neonatal Intensive Care Unit; 4) how to adequately transition these infants into the community; and (5) how to ensure optimal health through age two. Attendees include individual health care providers, congressional leaders and staff, representatives from national nursing and physician organizations, and national and regional preemie parent organizations.

Experts include: Judy Bernbaum, MD, Children’s Hospital of Pennsylvania; Amy Hair, MD, Texas Children’s Hospital; Martin Lee, PhD, Prolacta Bioscience; Trish MacEnroe, Baby-Friendly USA; Diane Spatz, PhD, University of Pennsylvania; Suzanne Staebler, DNP, Emory University; and Ram Yogev, MD, Northwestern University.

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, learning difficulties 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, MedImmune / Astra Zeneca, Competitive Edge and Prolacta Bioscience, will begin with a welcome reception at 6:00 p.m. on Wednesday, June 24 at the Columbus Club at Union Station. The plenary session will be held at the Andrew W. Mellon Auditorium on Thursday, June 25 from 8:45 a.m. to 4:00 p.m.

The events on June 24-25 are open to the press. Press interested in attending should RSVP to Susan Hepworth, shepworth@allianceforpatientaccess.org no later than Wednesday, June 24.


The quietest voice on Capitol Hill

by Mitchell Goldstein, M.D.
The Hill, June 15, 2015

Capitol Hill can get noisy this time of year.  So many advocates, causes, meetings, rallies, constituents – all vying with one another for the attention of our elected officials.  But among these is a “quiet” group; in fact, a voiceless one.  And yet, they desperately need Congress’ attention.  These are the premature infants, who face grave and far-reaching health challenges, which create disproportionate healthcare costs and result in difficulty accessing the treatment they need. 

These infants require Congress’ attention.  One in nine babies is born premature, defined as before 37 weeks gestation.  But prematurity maintains a relatively low profile.  Their parents are often young and uneducated and unable or unwilling to challenge the system. Further, they are taxed with unexpected challenges as well as overwhelming medical expenses. The average hospital stay for a premature infant is nine times longer than that of a full-term baby, greater than $52,000 on average.  For many parents, these costs can be not only stressful but financially devastating.

Expenses pose a staggering burden for the nation’s health care system as well. The United States welcomes approximately 450,000 premature babies each year.  The annual nationwide cost of their stays in Neonatal Intensive Care Units totals $26 billion. Despite progress in the prevention of prematurity, we can do better.

Premature birth takes a heavy toll on America’s families.   Prematurity is the number one associated cause in infant death during the first year of life.  Preemies who do survive may have unexpected complications, such as hearing or visual impairments, cerebral palsy or mental retardation.  

The challenges continue in childhood and adulthood.  For some premature infants, respiratory syncytial virus will wreak havoc on their underdeveloped lungs and fragile immune systems.  They may have to return to the intensive care unit and be placed on assisted ventilation in order to survive. Some require heart lung bypass or ECMO.  Childhood asthma is highly associated with prematurity.  Chronic lung disease, learning difficulties, behavior and social-emotional concerns, and poor health and growth may continue to affect these babies for the rest of their lives. 

And which families face these challenges most frequently?  Those already affected by disparity.  African American mothers are more likely than white mothers to deliver premature infants. The Centers for Disease Control reports that the rate is almost twice that of white or Hispanic mothers. Socio-economic disparities and the mothers’ inability to access quality prenatal care can further complicate these infants’ prognosis.

Congress must shape policy that protects these infants’ by supporting access to the care, optimal nutrition and treatment advised by their health care providers.  We must take care to see that preemies, especially those burdened with multiple disparities – health challenges, socio-economic concerns, racial barriers – have an equal opportunity at getting the health care they need. In a health care environment strapped by a need to curtail costs, we cannot let premature infants fall prey to budget-conscious policies that restrict their access to the medications and care they desperately need.  We cannot balance the budget on the backs of our most fragile premature infants. These policies that limit lifesaving preventative measures can contribute to poor outcomes and perpetuate the cycle.

This is our rallying cry. On behalf of health care providers, parents and advocates of fragile preemies united, I urge Congress to listen.

Goldstein is a neonatologist in Loma Linda, CA and chairman of the National Coalition for Infant Health.

NANN - Baby Steps To Home Discharge Pathway

Developed by the National Association of Neonatal NursesBaby Steps to Home is the first standardized, evidence-based discharge pathway designed for nurses. The resource is available online to all hospitals across the country. Baby Steps to Home contains downloadable documents for professional education as well as easy-to-understand handouts that nurses can share with parents prior to their baby's discharge.

Included in this resource are:

  • Ten steps of discharge covering 25 topics from common diagnoses to follow-up appointments
  • Downloadable evidence-based PDFs for nurses
  • Parent handouts that explain the condition, suggest questions for parents to ask their baby's providers, and provide practical information and tips
  • Modifiable parent handouts in English and Spanish that allow you to include your hospital's logo and other unit-specific information

For more information about Baby Steps to Home, visit their website at www.babystepstohome.com.

Premature Infant Advocacy Toolkit

This toolkit provides you with information, guidance and resources designed to help you become a knowledgeable and skilled advocate for premature infants. It is designed to be a resource for people at all stages of advocacy involvement from those with a specific area of interest who have several hours per week to research the issues and take part in activities to those who can only spare an hour or two every few months to participate in an event, address an issue or challenge or write a letter to their local legislator.

AHRQ - Transitioning Newborns from the NICU to the Home Toolkit

This toolkit from the Agency for Healthcare Research and Quality (AHRQ) provides resources to hospitals that wish to improve the safety at which newborns are transitioned home from the neonatal intensive care unit (NICU). The implementation of health coach programs, availability of coaching tools, and numerous other tools were designed to increase the safety at which fragile newborn infants are introduced into the home environment.


National Perinatal Association on RSV

Respiratory Syncytial Virus (RSV) is the leading cause of hospitalization in all children less than 12 months of age in the United States and is a common illness affecting high-risk individuals, especially premature babies. RSV is dangerous for premature babies because they often lack fully-developed airways. Infants born prematurely do not have the immunity to help fight off viruses because they were born early.

The National Perinatal Association


Preterm Birth in Illinois: Understanding the Problem, Forging a Solution

This report from the Perinatal Advisory Committee of the Illinois Department of Public Health provides findings and recommendations concerning reducing preterm births in Illinois. SUMMARY OF FINDINGS The Problem: Preterm Birth and its Consequences

Preterm birth affects one in eight babies in the Preterm Birth in Illinois ReportUnited States, and 21,168 infants per year in Illinois (National Center for Health Statistics, 2009). Forging solutions to reduce preterm birth rates and improve pregnancy outcomes is one of the most urgent problems in maternal child health today. Infants born prematurely, or before 37 weeks completed gestation, suffer from increased risk of lifelong disabilities, including cognitive and learning problems, cerebral palsy, neurological problems, respiratory problems, and vision and hearing loss. These infants also are at an increased risk for Sudden Unexpected Infant Death (SUID), conditions such as Attention Deficit-Hyperactivity Disorder (ADHD), and recurrent hospitalizations. Preterm birth is the leading cause of infant mortality and newborn death. The significant and persistent racial, ethnic, and socioeconomic disparities in the rate of babies born too soon are deeply concerning. The consequences of an infant born prematurely have considerable emotional and financial impact on families, communities, and public-sector services. According to the Institute of Medicine, the annual societal economic burden associated with preterm birth in the United States was at least $26.2 billion in 2005, or $51,600 per infant born preterm.



NPA's Multidisciplinary Guidelines for the Care of Late Preterm Infants

In response to increasing awareness of the very real risks for late preterm infants, the National Perinatal Association has worked in collaboration with many partners across the spectrum of care, to create multidisciplinary guidelines that provide evidence-based recommendations for the care of late preterm infants.

These guidelines give healthcare providers and others a road map that focuses attention on the unique needs of late preterm infants from birth through early childhood, helping to ensure potential health risks aren't overlooked.

NPA Multidisciplinary Guidelines



Resources for Prematurity Awareness Month

November is Prematurity Awareness Month!

Check out activities from the March of Dimes to see all of the ways you can get involved throughout the month. Keep us up-to-date on how you are helping to promote preemie awareness so we can share your efforts with others!

Don't forget that November 17th is also World Prematurity Day!

Click here for great ways to get involved and stay informed from the March of Dimes.

The AAP Section on Perinatal Pediatrics

This website for neonatologists, pediatricians who work with premature infants, fellowship trainees, and families, features a wealth of resources and information, with separate webpages for neonatologists, pediatricians, trainees, and families. Updated monthly, these pages cover the latest news, publications, research, and events in the field of neonatal-perinatal pediatrics. Expert neonatologists share their experiences and knowledge through articles and reviews and compilations of resources. AAP_Perinatal_Image