Alliance for Patient Access / IfPA’s Patient Access Policy Blog / “Preemie Matters” Summit Raises Profile for Infant Health Issues

“Preemie Matters” Summit Raises Profile for Infant Health Issues

by Amanda Conschafter, blog editor

Perinatal health care providers, members of Congress, a nationally recognized CNN anchor, advocates and parents all gathered at Washington, DC’s Andrew W. Mellon Auditorium yesterday to voice a unified message: premature infants deserve better access to comprehensive health care.

During panel discussions, top neonatal experts addressed the value of breastfeeding and a human milk-based diet for vulnerable infants. Amy Hair, MD, of the Texas Children’s Hospital described the health benefits of a human milk diet, including donor milk. The Texas Children’s Hospital operates its own human milk bank and encourages an exclusively human-milk diet. As a result, Dr. Hair explained, its physicians see far fewer cases of premature infants developing the severe intestinal disease necrotizing enterocolitis. They also find that fewer premature infants need to receive nutrition intravenously.

A separate panel of experts discussed the need to protect premature infants from infectious diseases. Judith Bernbaum, MD, of the Children’s Hospital of Philadelphia, noted the “major impact” on infants whose parents refuse immunizations. Suzanne Staebler, DNP, of Emory University noted the “increased severity of illness” for premature infants who contract respiratory syncytial virus (RSV). The group expressed unanimous concern about restrictive guidelines that prevent premature infants from receiving preventative treatment against RSV.

[Related: Spikes in RSV Rekindle Access Worries]

The topic also resonated with Nancy Grace, the CNN anchor and mother of premature twins who served as the summit’s keynote speaker. Doctors delivered Grace’s son and daughter in November 2007, weeks before their January due date, because of maternal health complications. Grace requested palivizumab to protect the fragile twins from RSV but was repeatedly denied coverage. Grace, who was working on a book at the time, described calling her editor and saying, “I need my advance on this book now because I’ve gotta pay for [palivizumab] for the twins.” She expressed concern about families whose infants were denied coverage but couldn’t afford to pay for treatment out of pocket.

Two members of Congress also provided insight on infant care policy. U.S. Rep. Jaime Herrera Beutler (R-Wash.) described her premature daughter’s experience with Potter Syndrome and outlined the need to facilitate treatment for other mothers and infants. “More than one” parent has approached Rep. Hererra Beutler, she explained, requesting help in getting treatment for the same condition. But Medicaid restrictions limiting coverage to in-state treatment can complicate the process.

U.S. Rep. Katherine Clark (D-Mass.) also addressed the group, describing the importance of treatment for infants with neonatal abstinence syndrome. Her bill on the topic, the Protecting Our Infants Act of 2015, is currently under consideration by the House Energy and Commerce Committee’s Subcommittee on Health.

Hosted by the Institute for Patient Access and the National Coalition for Infant Health, the summit invited input for a national policy agenda on infant care.

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