Jennifer Degl, author of From Hope to Joy: A Memoir of a Mother's Determination and Her Micro Preemie's Struggle to Beat the Odds and champion of the Newborn Health Initiative shares her experiences as a Keynote Speaker at the 32nd Annual NANN Conference last week in Palm Springs.

​ "[NICU nurses] are not only concerned with saving and caring for our premature and medically fragile babies, but they also want to make sure that we all leave the NICU with as little bruises as possible," Ms. Degl writes. "There is no way to leave the NICU unscathed by our experiences after watching our babies (and often ourselves) endure so much pain and suffering, but I learned that the NICU nurses are always looking for newer and better methods to minimize it for us all." 

This morning, the original House sponsors of the Promoting Life-Saving New Therapies for Neonates Act (H.R. 5182), Reps. Billy Long (R-MO) and Ben Ray Luján, published an op-ed in Morning Consult highlighting the need for a new approach to developing medicines for our nation's newborns. The bipartisan duo of lawmakers describe the vital need for new therapies, noting that 1 in 10 babies are born before reaching full-term and that over 90% of the medicines currently given to newborns have not been explicitly tested or endorsed by federal regulators. 

"This evidence all points to an urgently needed restructuring of the system we use to promote the development of novel therapies for our newborns," the lawmakers write. "That’s why we are proud to be the House sponsors of the Promoting Life-Saving New Therapies for Neonates Act. In partnership with our Senate colleagues, Sens. Bill Cassidy (R-LA) and Bob Casey (D-PA), we aim to create a new approach in encouraging our medical community to discover breakthrough treatments for healthcare’s most precious patients." 

The full op-ed is provided below. To send a letter to your representatives in Congress urging their support for the Promoting Life-Saving Therapies for Neonates act, click here. 

​Join us on Wednesday, June 22 at 1:30 PM in Room 121 of the Cannon House Office Building for an eye-opening congressional briefing that will highlight the dire need for innovation for the American newborn population. This special educational event will feature a panel of experts with unique backgrounds and experiences in "preemie" health who will discuss these issues and the bipartisan House solution that may someday save thousands of young lives. 

Today, the Ripon Advance, a Washington DC-based public policy news firm, featured an article about the House introduction of H.R.5182, The Promoting Life-Saving New Therapies for Neonates Act. The news firm writes, "H.R.5182, introduced by [Rep. Billy Long R-MO] and U.S. Rep. Ben Ray Luján (D-NM), would promote innovative neonatal drug therapies that improve outcomes for at-risk infants." The article goes on to highlight the fact that families with children who are born prematurely or sick simply do not have enough options to save their newborns and explains that the bill aims to make life-saving treatments for at-risk newborns more widely available. 

A number of published studies now show, as reported by Science Daily, that nearly one in four babies in the neonatal intensive care unit (NICU) receive acid suppressing medication, despite the fact that the drugs have not been approved for newborns. These drugs have proven to be dangerous for newborns as several of these studies show that the use of acid suppression medications in hospitalized high-risk babies is often associated with infection, necrotizing enterocolitis and increased risk of death. Therefore, Science Daily stresses the importance of the research community in studying the effectiveness and safety of these drugs for newborns. 

On Wednesday, April 6, the Health, Education, Labor, and Pensions (HELP) Committee held the last in a series of three markups on the so-called Innovation for Healthier Americans Initiative. A separate bill sponsored by Sen. Joe Casey (D-PA) to incentivize the development of new treatments for newborns - the Promoting Life-Saving New Therapies for Neonates Act (S. 2041) - was submitted via an amendment from one of the bill's primary sponsors, Sen. Bill Cassidy (R-LA). The newborn health amendment was submitted during the markup, one of a separate bill (S. 2700) related to the Food and Drug Administration (FDA) and National Institutes of Health (NIH) workforce. 

Sen. Cassidy – one of a handful of physicians serving in Congress – spoke powerfully on the dire need for new treatments for newborns and how his bill would help spur the innovation needed to help bring neonatal drug therapies into the 21st Century. 

Kaiser Health News describes current treatment practices for babies born addicted to opioid drugs, despite lack of research or Food and Drug Administration (FDA) approval. Currently, the American Academy of Pediatrics and others recommend treating addicted babies, also known as neonatal abstinence syndrome, with opioids such as morphine and methadone because "you’re giving them back what they’re withdrawing from." 

However, chief of newborn medicine at Tufts’ Medical Center, Dr. Jonathan Davis, says no one’s really done the research to determine which drug works better for babies, and doctors are left to figure that out by trial and error, case by case. Though the FDA hasn’t officially approved morphine or methadone for use in newborns, doctors prescribe these drugs to the children anyway, in smaller doses than they give adults.