The Institute for Patient Access and the National Coalition for Infant Health hosted the 2016 Infant Health Policy Summit in Washington, DC on September 15. 

Health care providers, patient advocates, parents, and policy makers gathered to discuss patient access issues facing vulnerable infants and their families.

Representative Katherine Clark (D-MA)   

Representative Katherine Clark (D-MA)   

Kelley French, Author, Juniper: The Girl Who Was Born Too Soon

Kelley French, Author, Juniper: The Girl Who Was Born Too Soon

Representative Katherine Clark (D-MA), for the second year in a row, addressed attendees about congress’ work in infant and maternal health. Kelley French, an award-winning journalist, Pulitzer Prize finalist, author, and mother of a premature infant born at 23 weeks served as the keynote speaker. 

The “Gap Baby”: How Preemies Are Unprotected From RSV

The “Gap Baby”: How Preemies Are Unprotected From RSV

Preemie Nutrition: A Discussion About Human Milk Quality & Safety

Preemie Nutrition: A Discussion About Human Milk Quality & Safety

PPD & PTSD: Impact Of The NICU On Parents, Families, And Staff

PPD & PTSD: Impact Of The NICU On Parents, Families, And Staff

Experts led discussions about:

  • human milk quality and safety
  • access barriers to preventative treatment for respiratory syncytial virus
  • post partum depress and post traumatic stress disorder and the impact of the NICU on parents, families, and staff
  • optimal maternal nutrition 
Nutrition Dilemmas Facing Expectant and New Moms

Nutrition Dilemmas Facing Expectant and New Moms

CDC Zika Briefing

CDC Zika Briefing

Attendees received an up-to-the-minute briefing on Zika Virus from CDC’s Dr. Coleen Boyle, a key member of the Zika response task force.

“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.” – Mitchell Goldstein, M.D., National Coalition for Infant Health Medical Director

 
 

The Institute for Patient Access and the National Coalition for Infant Health welcomed health care providers, advocates, parents and members of Congress for the Preemie Matters National Policy Summit in Washington, DC on June 24-25, 2015.

The summit featured remarks from preemie mom and CNN host Nancy Grace, who shared her personal and powerful story of her premature twins’ birth and the many challenges they faced. Conference attendees were also privileged to hear from Congresswoman Katherine Clark (D-MA) and Congresswoman Jaime Herrera Beutler (R-WA), who are both active leaders in supporting the nation’s most fragile patient population.

The summit brought together experts from across the country to discuss access issues facing premature infants and their families, and to assist in establishing a policy platform for the NCfIH. Attendees included health care providers, representatives from national nursing and physician organizations, along with leaders of both national and regional preemie parent organizations.

Two panel discussions included:

Protecting Preterm Infants from Infectious Disease

Panel experts:

  • Judy Bernbaum, MD, Children’s Hospital of Pennsylvania
  • Mitchell Goldstein, MD, National Coalition for Infant Health
  • Suzanne Staebler, DNP, Emory University
  • Ram Yogev, MD, Northwestern University

Optimal Nutrition and Health for Preterm Infants

Panel experts:   

  • Amy B. Hair, MD, Texas Children’s Hospital
  • Martin L. Lee, PhD, Prolacta Bioscience
  • Trish MacEnroe, Baby-Friendly USA
  • Diane Spatz, PhD, University of Pennsylvania

Three interactive breakout sessions included:

  • What do preemies and parents needs in the NICU?
  • Ensuring continuity of care of premature infants into the community after the NICU
  • Setting up preemies for optimal health through age two

NCfIH is a multidisciplinary collaborative of provider, parent, community and national support organizations focused on improving the lives of premature infants and their families through public policy and access to optimal health therapies. The coalition is committed to the special needs of premature infants through age two.

Read NCfIH’s Values

“The Preemie Matters summit provided a solid foundation for a national strategy to guide the coalition in educating policymakers, the public, and media on issues regarding access and appropriate clinical standards. It was a success thanks to our expert panelists, informed speakers and engaged attendees.”  

-National Coalition for Infant Health Medical Director Mitchell Goldstein, M.D.