
![]() Reps. Billy Long (R-MO) and Ben Ray Juján (D-NM) re-introduced legislation -- The Promoting Life Saving New Therapies for Neonates Act (H.R. 2641) -- to boost the amount of life-saving treatments available for at-risk newborn babies. Approximately 200,000 newborns in the United States require admission to a neonatal intensive care unit every year. Among those who survive, one in five faces health problems that persist for life such as cerebral palsy, intellectual disabilities, chronic lung disease, and deafness. But unfortunately, current incentives have not been sufficient to stimulate novel therapies for the neonatal population due to numerous challenges.
The National Coalition for Infant Health Issue Letters of Support for S. 2041 and H.R. 518210/3/2016 The National Coalition for Infant Health (NCfIH) wrote a letter to Sens. Bill Cassidy (R-LA) and Bob Casey (D-PA) and a separate letter to Reps. Billy Long (R-MO) and Ben Ray Lujan (D-NM) thanking them for spearheading the Promoting Life-Saving New Therapies for Neonates Act. NCfIH is a collaborative of professional, clinical, community health, and family support organizations focused on improving the lives of premature infants and their families. NCfIH is dedicated to promoting lifelong clinical, health, education, and supportive services needed by premature infants and their families. NCfIH's backing of the bill adds to the growing support for the legislation among the patient and health professional communities.
A group of leading children's hospitals sent a letter of support yesterday to Reps. Billy Long (R-MO) and Ben Ray Luján (D-NM) thanking them for introducing the Promoting Life Saving New Therapies for Neonates Act of 2015 (H.R. 5182). The letter was signed by seven children's hospitals including: Cheyenne Children’s Clinic (WY), Children’s Healthcare of Atlanta, Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Children’s Mercy Hospital and Clinics (MO), Nationwide Children’s Hospital (OH), and St. Louis Children's Hospital. "On behalf of the nation’s leading children’s hospitals, whose doctors and nurses make the protection of newborn lives their personal and professional calling, we thank you for introducing this important legislation and encourage your colleagues to join this worthy effort," they write.
![]() Today, the National Perinatal Association (NPA) issued a formal position of support for both the Senate and House versions of the Promoting Life-Saving New Therapies for Neonates Act. The NPA is a non-profit organization dedicated to giving a voice to the needs of pregnant women, infants, their families, and their healthcare providers to generate a positive impact on perinatal care in the United States. Support from the NPA's diverse membership adds to the growing support for the bill among the patient and health professional communities. A group of leading children's hospitals recently sent a letter of support to Sens. Bill Cassidy (R-LA) and Bob Casey (D-PA) applauding them for the introduction of the Promoting Life Saving New Therapies for Neonates Act of 2015 (S. 2041). The letter was signed by children's hospitals including: Cheyenne Children’s Clinic (WY), Children’s Healthcare of Atlanta, Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Children’s Mercy Hospital and Clinics (MO), and Nationwide Children’s Hospital (OH). As the groups write, "Despite the serious challenges that can confront newborns, innovation in neonatal health has stalled... Your innovative proposal will help to reverse this untenable status quo and spur the necessary investment and restructuring required to bring groundbreaking cures for newborns into the 21st Century." ![]()
![]() 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, writes letters to New York Senators Kirsten Gillibrand and Chuck Schumer urging them to support S. 2041, the Promoting Life-Saving New Therapies for Neonates Act of 2015.
![]() The Tiny Miracles Foundation, a volunteer-based organization that provides emotional support, practical assistance, supplies and information to parents of children born prematurely writes letters to Connecticut Senators Chris Murphy and Richard Blumenthal urging them to support S. 2041, the Promoting Life-Saving New Therapies for Neonates Act of 2015. ![]() A letter on behalf of the National Association of Neonatal Nurses urges the Senate Health, Education, Labor, and Pensions (HELP) Committee Ranking Member Patty Murray (D-WA) to support S. 2041, the Promoting Life-Saving New Therapies for Neonates Act of 2015. ![]()
![]() A letter on behalf of the National Association of Neonatal Nurses urges the Senate Health, Education, Labor, and Pensions (HELP) Committee Chairman Lamar Alexander (R-TN) to support S. 2041, the Promoting Life-Saving New Therapies for Neonates Act of 2015. ![]()
![]() A letter on the behalf of the Graham's Foundation urges Senators Bob Casey (D-PA), Sherrod Brown (D-OH), and Rob Portman (R-OH) to support S. 2041, the Promoting Life-Saving New Therapies for Neonates Act of 2015. ![]()
![]() Experts provide an investigation of progress made in neonatal studies and neonatal product labeling as a result of federal legislation. ![]()
![]() In this study, experts show that the current process of labeling drugs often does not address the therapeutic needs of premature newborns and outline challenges of the completion of studies on which to base a label for newborns. ![]()
![]() In this article from the Journal of the American Medical Association, a trio of leading doctors provide a detailed analysis of the impact a lack of research have on the treatment of newborns. ![]()
![]() A group of medical experts argue that while medical innovation has been extraordinary, an approach that is "unique to a small group of newborns" is required. ![]()
![]() This detailed study from the Institute of Medicine of the National Academies provides an in-depth look at the pediatric studies conducted under the Best Pharmaceuticals for Children Act and the Pediatric Research Equity Act ![]()
![]() Two experts from pediatric pharmacology write an opinion piece for Clinical Pharmacology & Therapeutics arguing that newborn treatment development has been inadequate and that "our most vulnerable population deserves better care." ![]()
![]() This piece in the journal Clinical Pharmacology and Therapeutics presents the case for renewing federal legislative support for drug development for children. ![]()
![]() This article from 2001 provides a compelling history of medical studies on pediatric patients and attempts to improve pediatric labeling in the 20th Century. ![]()
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