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For the third year in a row, the Institute for Patient Access and National Coalition for Infant Health hosted the 2017 Infant Health Policy Summit in Washington, DC on October 26. 

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

Vertical Transmission: A New Wave of Hepatitis C Carriers

Vertical Transmission: A New Wave of Hepatitis C Carriers

Safety in the NICU: New Tubes, New Problems?

Safety in the NICU: New Tubes, New Problems?

Expert panels explored how the opioid crisis is bringing a baby boomer disease to pregnant women and how an attempt to fix hospital tubing mix-ups could endanger preemies in a new way. Other discussions centered on how existing problems, such as preemies’ inability to access preventive treatment for a deadly seasonal virus or human donor milk for optimal nutrition, continue to pose risks.

Milk Matters: Diversity, Quality & Safety

Milk Matters: Diversity, Quality & Safety

The RSV Story: When Treatment is Out of Reach But Not Out of Mind

The RSV Story: When Treatment is Out of Reach But Not Out of Mind

The summit’s keynote address featured Adam Busby, star of TLC’s “OutDaughtered.” The show chronicles the life of he and his wife, Danielle, as parents of all-girl quintuplets. Earlier this year, during the show’s third season, Adam came public with his experience of paternal postpartum depression.

Adam Busby, star of TLC’s “OutDaughtered” and paternal postpartrum depression advocate

Adam Busby, star of TLC’s “OutDaughtered” and paternal postpartrum depression advocate

Adam and Danielle Busby pose with summit attendees

Adam and Danielle Busby pose with summit attendees

Attendees also heard from Andrew Rosenberg, director of the Newborn Health Initiative. Once a preemie himself, Rosenberg advocates for medicines that are designed for and tested on infants. There has not been a new drug approved to improve survival and outcomes in premature infants in over 25 years.


 
 
 
 

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.