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Dear Chairwoman Murray and Ranking Member Burr:

As you return from the August state work period, the undersigned organizations committed to the health of our nation’s mothers, infants, children, and families urge you to take action on S. 350, the “Newborn Screening Saves Lives Reauthorization Act of 2021,” which is sponsored by Senators Maggie Hassan (D-NH) and Roger Wicker(R-MS). The House version of the bill (H.R. 482) passed with overwhelming bipartisan support last summer. Given the very limited availability on the Senate calendar, now is the time for the Senate to act on this bill and advance it to the floor.

It is imperative that the Senate acts quickly to pass this legislation. Each year thousands of babies are born with a genetic, metabolic, hormonal, or functional condition that is not clinically apparent at birth. A simple set of tests performed at birth can detect these life-threatening illnesses, allowing crucial time for early treatment to prevent more serious long-term health problems. Unfortunately, critical gaps and challenges still remain. Discrepancies in the number of tests given from state to state cause children to tragically die or become permanently disabled from otherwise treatable disorders.

This bill would address these challenges and help pave the way forward for improved, life-saving screening practices. This legislation would:

  • Update the authorizing language for the Federal newborn screening programs, allowing them to keep up with the latest technology and approaches;
  • Increase the authorized funding levels to bring them more in line with the needs of the programs; and
  • Commission a study on the next generation of newborn screening.

This legislation overwhelmingly passed the House in June 2021 but has not been considered in the Senate. The Senate’s delay continues to jeopardize the health and well-being of thousands of newborns across the country born with serious and life-threatening conditions. Inadequate funding, outdated authorizing language, and lack of analysis on how to innovate within our newborn screening programs will only be exacerbated the longer the Senate delays. We cannot afford to wait until the next Congress.

We greatly appreciate your consideration of our request. This bipartisan bill is a cost-effective strategy that saves lives, prevents disability, and improves the quality of life for thousands of infants and families each year. We look forward to working with you to ensure that our nation’s critical newborn screening programs are reauthorized without any further delay.

ALD Alliance

American Academy of Allergy, Asthma & Immunology

American Academy of Pediatrics

American Association for Clinical Chemistry

American College of Medical Genetics and Genomics

American College of Obstetricians and Gynecologists

Association of Maternal & Child Health Programs

Association of Public Health Laboratories

Boomer Esiason Foundation

BDSRA Foundation

Cure Duchenne

Cure Sanfilippo Foundation

Cure SMA

Cystic Fibrosis Foundation

EveryLife Foundation for Rare Diseases

E.WE Foundation

Firefly Fund

Friedreich's Ataxia Research Alliance

Galactosemia Foundation

Gene Giraffe Project

Genetic Alliance

Histiocytosis Association

Hunter’s Hope Foundation

HCU  Network AmericaImmune Deficiency Foundation

Jeffrey Modell Foundation


Newborn Screening Action Network

March  of Dimes


Mississippi Metabolics Foundation

Muscular Dystrophy Association

Myositis Association

National Ataxia Foundation

National Foundation for Ectodermal Dysplasia

National Fragile X Foundation

National Health Counci

lNational Institute for Children’s Health Quality

National MPS Society

National Organization for Rare Disorders

National Partnership for Women & Families

Network of Tyrosinemia Advocates

Newborn Foundation

Newborn Screening Translational Research Network

Organic Acidemia Association

Parent Project Muscular Dystrophy


Rare  Access Action Project

Rare Disease Innovations Institute, Inc.

RARE-XRare  New England

Ryan Foundation for Rare Disease Research

SCID Angels for Life Foundation

Stronger Than Sarcoidosis and Sarcoidosis of Long Island STXBP1 Foundation

SYNGAP1 Foundation

Alexion Pharmaceuticals, Inc.

Amicus Therapeutics

BioMarin Pharmaceutical Inc

EnzyvantInvitae Corporation

NovartisOrchard Therapeutics

PerkinElmerPTC Therapeutics, Inc

Rare Disease Company Coalition


Sarepta Therapeutics, Inc.


TakedaTenaya Therapeutics

Travere Therapeutics