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. 

    Join Our List of Supporters
Dr. Jonathan Davis, Chief of Newborn Medicine at Tufts University School of Medicine, told staff members at the recent Congressional briefing, “We can do better. We have the worst rates of prematurity of any developed country… but people don’t want to do [clinical] studies on babies.” Further, with a dedicated effort to improving treatments for preemies, Dr. Davis estimated that a significant dent could be made in the $29 billion spent annually on treating prematurity and related conditions. Click here to read a blog post about the briefing on Capitol Hill. 
Current supporters of the Newborn Health Initiative include:
  • Cheyenne Children's Clinic
  • Children's Healthcare of Atlanta
  • Children's Hospital of Philadelphia
  • Children's Hospital of Pittsburgh 
  • Children's Mercy Kansas City
  • Council of International Neonatal Nurses
  • Lucile Packard Children's Hospital
  • National Association of Neonatal Nurses
  • National Association of Neonatal Nurse Practitioners
  • National Coalition for Infant Health
  • National Perinatal Association
  • Nationwide Children's Hospital
  • St. Louis Children's Hospital

What you need to know...

Despite incredible advances in medicine, neonatologists and NICU nurses have been left with inadequate resources and limited guidance in treating some of American’s youngest patients, the neonatal population. Prematurity remains the leading cause of newborn mortality in the United States, and every year approximately 200,000 newborns require admission to a 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 neonates in nearly 20 years, and more than 90 percent of drugs used to treat neonates have not yet been approved by the FDA for the prescribed indication. Fortunately, recently proposed legislation in Congress marks a strong and historically important step in the right direction.
 
Currently, the risk does not outweigh the reward for drug makers to invest in neonatal research.
  • It is difficult and costly to conduct studies on neonates as sample sizes are very limited due to a variety of factors.
  • Patients are very sick so it is difficult to get informed consent from caregivers and researchers are only given 28 days to study a patient before he or she ages out of the neonatal population. 
  • 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 the neonatal population.
  • The legislation creates a new incentive model by providing an “exclusivity voucher” to drug sponsors who successfully develop products for neonates. This voucher would enable the product sponsor to extend the exclusivity period on another drug by one year.
 
The legislation aims to solve a number of priority conditions among neonates
  • The legislation ensures that new neonatal drugs target the specific issues physicians have the most difficulty treating by requiring the FDA and NIH to collaborate with experts to identify priority conditions.
  • Conditions drug makers are likely – but not limited – to target include bronchopulmonary dysplasia, respiratory distress syndrome, patent ductus arteriosus, and bradycardia.