We need your support.

​Our growing list of supporters helps us show Members of Congress that Americans care about the need to advance medical treatments for neonates and urge them to support the Promoting Life-Saving New Therapies for Neonates Act. ​Both organizations and individuals are encouraged to fill out the form below to indicate their support. 

Jennifer Degl, the author of 'From Hope to Joy,' told staff members at the recent Congressional briefing, "I was surprised when I heard that a new drug hasn’t been developed for neonates in almost 20 years. ​As a science teacher, it’s remarkable that Apple can release a new iPhone every year, yet every medication being used to treat my daughter was developed when I was still in high school.” Click here to read a blog post about her experience on Capitol Hill. 

Current supporters of the Newborn Health Initiative include:

• From Hope to Joy
• Graham’s Foundation
• Hand to Hold
• Infants Remembered in Silence
• Kai Jeremiah Foundation
• Lily's Hope Foundation
• Morgan Leary Vaughan Foundation

• National Coalition for Infant Health
• National Perinatal Association 
• NICU Helping Hands
• Pebbles of Hope
• Preemie World
• Tiny Miracles Foundation

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What you need to know...

Despite incredible advances in medicine, prematurity is a terrifying prospect for babies and their families. Prematurity remains the leading cause of newborn mortality in the United States, and every year approximately 200,000 newborns require admission to a neonatal intensive care unit (NICU). Those who survive often must confront serious lifelong health problems such as cerebral palsy, chronic lung disease, hearing problems, and varying degrees of developmental struggles that impact them in both social and academic areas of their precious lives.

​There is no single cause—and no cure—for an early delivery, but in those critical days and weeks after birth, doctors and nurses need innovative treatments that are specifically tailored to be used on their smallest patients. Unfortunately, due to a high level of difficulty, as well as the lack of proper incentive for investment, there has not been a new drug approved to improve survival and outcomes in premature infants in nearly 20 years. Fortunately, recently proposed legislation in Congress marks a strong and historically important step in the right direction.
 
More than 90% of drugs used to treat preemies are not approved by the Food and Drug Administration (FDA) for the prescribed indication

• Among some of the drugs given to treat neonates include caffeine, Viagra, steroids, and fentanyl.
• Due to the lack of research to determine the most effective drugs for neonates, doctors are left to treat their patients on a trial-and-error and case-by-case basis.
• Premature babies have unique body systems and body chemistry, which is why the common practice of “dosing down” a medicine to a smaller weight does not work well.
• Serious adverse drug reactions from experimenting with multiple drugs can significantly increase mortality and serious morbidity resulting in short- and long-term consequences.

 
Currently, the risk does not outweigh the reward for drugmakers to invest in neonatal research

• Conducting a study on neonates can be difficult and costly, as patients age out of the neonatal population after 28 days.
• Many conditions for which drug therapy is needed in the neonatal population do not occur in older children and adults.

 
New legislation in Congress offers a unique solution to spur medical innovation for neonates

• The Newborn Health Initiative is rallying stakeholders – including preemie parents, nurses, and children’s hospitals – around legislation that would close the treatment gap by encouraging research around safe and effective drugs for neonates.
• The legislation creates a new incentive model by providing an “exclusivity voucher” to drug sponsors who successfully develop products for neonates.
• The legislation ensures that new neonatal drugs address the most critical needs in the neonatal population by requiring the FDA to collaborate with experts to identify priority conditions.