Senator Dodd explains the details of the newborn screening legislation.

April 12, 2006
Stamford, CT—At Stamford Hospital today, Senator Chris Dodd unveiled details of bipartisan legislation he will introduce to educate parents and health care providers about newborn screening, improve follow-up care for infants with an illness detected through newborn screening, and help states expand and improve their newborn screening programs.

“Nothing is of greater importance than the health and well-being of our children. And thanks to incredible advances in medical technology, it is now possible to test newborns for many genetic and metabolic disorders that could lead to severe disability or death if left undetected,” Dodd said. “Fortunately, some newborn screening occurs in every state but fewer than half of the states, including Connecticut, actually test for all disorders that are detectable. So a child’s survival could very well be determined by the state in which the child was born. This legislation will provide resources for states to expand their newborn screening programs – a move that I hope will save lives and keep our children healthy.”

An estimated 3,000 babies are identified and treated each year for conditions that could threaten their lives or daily health, often preventing death and long-term disability. Unfortunately, parents are often unaware that while nearly all babies born in the U.S. undergo some newborn screening, the number and quality of tests vary from state to state. As a result, a child with a given disorder will most likely receive successful diagnosis and treatment if born in a state that tests for that disorder, but may suffer irreversible injury or death if born in another state that does not require such testing.

The Newborn Screening Saves Lives Act will:

• Authorize $15 million in 2007 (and such sums as may be necessary in 2008-2011) for grants to:
  • Educate and train health care professionals and state laboratory personnel in newborn screening and relevant new technologies;
  • Educate and inform parents, families, and patient advocacy and support groups about newborn screening; and
  • Establish a coordinated system of follow-up care for newborns and their families after screening and diagnosis.
• Provide resources to states to expand and improve their newborn screening programs, and encourage states to test for the full panel of disorders recommended by the Advisory Committee on Heritable Disorders in Newborns and Children.
• Reauthorize and expand the role of the Advisory Committee to continuously revise and update the panel of recommended tests, as well as advise the Secretary of Health and Human Services (HHS) on other steps that can be taken to improve newborn screening programs as we learn more about these rare illnesses and as new treatments and technologies are developed.
• Require the Centers for Disease Control and Prevention (CDC) to ensure the quality of laboratories involved in newborn screening, so that tests are as accurate as possible and infants receive appropriate care.
• Establish a system for collecting and analyzing data from newborn screening programs, to help researchers develop a better understanding of the disorders detected by newborn screening, and how they might be better detected, prevented, treated, and cured.

Dodd will introduce this legislation when the Senate reconvenes later this month.

Dr. Gerald Rakos, Chief of Pediatrics, Stamford Hospital (above) leads Senator Dodd on a tour of the Neonatal Unit at Stamford Hospital.