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Legislation: The Promoting Life Saving New Therapies for Neonates Act

10/10/2017

 
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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.


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The National Coalition for Infant Health Issue Letters of Support for S. 2041 and H.R. 5182

10/3/2016

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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.

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Leading Children's Hospitals Issue Statement of Support for The Promoting Life-Saving New Therapies for Neonates Act

7/22/2016

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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. 

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National Perinatal Association Issues Statement of Support for The Promoting Life-Saving New Therapies for Neonates Act

6/15/2016

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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.


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Leading Children's Hospitals Applaud Senators Cassidy, Casey on S. 2041

4/5/2016

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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."
Children's Hospital Group Letter
File Size: 254 kb
File Type: pdf
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Author of 'From Hope to Joy' Urges New York Senators to Support S. 2041

2/4/2016

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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. 


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Cheyenne Regional Medical Center Applauds S.2041 in Letters to Wyoming Senators

1/25/2016

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The Cheyenne Regional Medical Center, a county memorial hospital in Wyoming's capital, wrote to Senators John Barrasso (R-WY) and Michael Enzi (R-WY) to express their support for S.2041, the Promoting Life-Saving Therapies for Neonates Act of 2015. Cheyenne Memorial has partnered with Children's Hospital Colorado, one of the premier facilities in the country, on their pediatric care and believes that this alliance can be "enhanced further through the proposed legislation." 

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The Tiny Miracles Foundation Urges Lawmakers to Support S. 2041 

1/11/2016

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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. 


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NANN State Chapters Urge Support for S. 2041

12/21/2015

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The National Association of Neonatal Nurses (NANN) state chapters write letters to Senators from the following six states: California, Iowa, North Carolina, Pennsylvania, Texas, and Wisconsin urging them to support S.204, the Promoting Life-Saving New Therapies for Neonates Act of 2015. 


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NANN Letter Urging Senator Patty Murray to Support S.2041

11/3/2015

 
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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. 

NANN Letter Urging Senator Patty Murray to Support S.2041
File Size: 156 kb
File Type: pdf
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NANN Letter Urging HELP Committee Chairman Lamar Alexander to Support S. 2041

11/3/2015

 
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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. 

NANN Letter Urging HELP Committee Chairman Lamar Alexander to Support S. 2041
File Size: 157 kb
File Type: pdf
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Graham's Foundation Urges Senators to Support S. 2041

10/30/2015

 
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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. 


Graham's Foundation Urges Senators to Support S. 2041
File Size: 1109 kb
File Type: pdf
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JAMA: Drug Labeling and Exposure in Neonates

10/1/2014

 
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Experts provide an investigation of progress made in neonatal studies and neonatal product labeling as a result of federal legislation. 

JAMA: Drug Labeling and Exposure in Neonates
File Size: 211 kb
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JAMA: Newborns, One of the Last Therapeutic Orphans to Be Adopted

2/1/2014

 
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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. 

JAMA: Newborns, One of the Last Therapeutic Orphans to Be Adopted
File Size: 89 kb
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JAMA: The Need for Rigorous Evidence on Medication Use in Preterm Infants

7/16/2013

 
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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.

JAMA: The Need for Rigorous Evidence on Medication Use in Preterm Infants
File Size: 47 kb
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Journal of Pediatrics: 'Improving Drug Formulations for Neonates'

7/10/2012

 
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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.  

Journal of Pediatrics: 'Improving Drug Formulations for Neonates'
File Size: 76 kb
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'Safe and Effective Medicines for Children'

1/15/2012

 
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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

'Safe and Effective Medicines for Children'
File Size: 2356 kb
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'Clinical Trials in Neonates: A Therapeutic Imperative'

12/1/2009

 
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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."

'Clinical Trials in Neonates: A Therapeutic Imperative'
File Size: 90 kb
File Type: pdf
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'Future of Pediatric Therapeutics: Reauthorization of BPCA and PREA'

4/23/2007

 
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This piece in the journal Clinical Pharmacology and Therapeutics presents the case for renewing federal legislative support for drug development for children. 

'Future of Pediatric Therapeutics: Reauthorization of BPCA and PREA'
File Size: 82 kb
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Pediatric Annals: 'Children, Drugs, and the Food and Drug Administration'

4/2/2001

 
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This article from 2001 provides a compelling history of medical studies on pediatric patients and attempts to improve pediatric labeling in the 20th Century.

Pediatric Annals: 'Children, Drugs, and the Food and Drug Administration'
File Size: 489 kb
File Type: pdf
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