[Congressional Record Volume 165, Number 81 (Wednesday, May 15, 2019)]
[House]
[Page H3796]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                     NEWBORN SCREENING SAVES LIVES

  The SPEAKER pro tempore. The Chair recognizes the gentlewoman from 
California (Ms. Roybal-Allard) for 5 minutes.
  Ms. ROYBAL-ALLARD. Madam Speaker, I recently introduced the Newborn 
Screening Saves Lives Reauthorization Act, which will continue the 
important work of the original bill and expand its critical programs to 
improve infant health across the United States. Every year, thousands 
of babies are born with genetic, metabolic, hormonal, and functional 
conditions that severely affect their development.
  Fifty years ago, these rare disorders in infants would have gone 
undetected until symptoms appeared, often too late to provide them with 
the essential treatment needed to prevent lifelong disability or even 
death. Today, we can give newborn babies a simple blood test that can 
identify such life-threatening genetic illnesses before symptoms 
appear.
  In 2008, Congress passed my original bill, which was a major step 
toward establishing newborn screening guidelines across the United 
States. Until that time, only 10 States and the District of Columbia 
required newborn screening for a complete panel of recommended 
disorders, and there was no Federal repository of information on these 
diseases. Today, 49 States and the District of Columbia screen for at 
least 31 of the 35 currently recommended core conditions.
  Each year, with newborn screening, healthcare professionals identify 
approximately 12,000 babies who test positive for one of these rare 
conditions. This invaluable early detection allows for timely treatment 
to prevent long-term damage and severe health complications, which 
gives babies the opportunity to live relatively normal and healthy 
lives.
  For thousands of mothers and families, this early and simple 
intervention can also reduce the emotional stress of trying to identify 
their baby's correct diagnosis.
  Investments in newborn screening can also save up to $1 million over 
a child's lifetime. This is a significant savings for American families 
and our financially burdened healthcare system.
  While it is true that since the original passage of the Newborn 
Screening Saves Lives Act, significant advancements have been made in 
early detection and treatment, serious gaps in newborn screening 
remain. The Newborn Screening Saves Lives Reauthorization Act 
will build on the current newborn screening infrastructure and 
strengthen early detection of preventable disease.

  To ensure the quality of laboratories involved in newborn screening, 
the bill reauthorizes the Centers for Disease Control grants, and it 
continues HRSA grants to empower parents and health professionals with 
education and resources to improve newborn screening.
  The bill also renews the Secretary's Advisory Committee on Heritable 
Disorders in Newborns and Children, which maintains and updates the 
recommended uniform screening panel that States adopt and implement.
  The bill funds research to identify new screening technologies and 
treatments, and a new provision in the bill commissions the National 
Academy of Medicine to issue recommendations to modernize newborn 
screening systems into the 21st century.
  The Newborn Screening Saves Lives Reauthorization Act will continue 
to ensure that parents and health providers are knowledgeable about the 
value of newborn screening, and it will help ensure that infants across 
the United States receive comprehensive and consistent testing.
  A coalition of public health groups, including the March of Dimes, 
the Association of Public Health Laboratories, the American College of 
Medical Genetics, and the National Organization for Rare Disorders, 
support the Newborn Screening Saves Lives Reauthorization Act. Their 
leadership has been critical to advance newborn screening across the 
United States.
  Madam Speaker, newborn screening is one of the most important public 
health interventions of the 20th century. It is critical that, in the 
21st century, we continue and strengthen the programs and research of 
the Newborn Screening Saves Lives Act.
  I urge my colleagues to sponsor the Newborn Screening Saves Lives 
Reauthorization Act to enhance the lives of hundreds of infants and 
families each year in the United States.

                          ____________________