Newborn Screening Legislation Introduced in U.S. House of Representatives
Washington, DC, March 20, 2013
WASHINGTON, March 20, 2013 — Congresswoman Lucille Roybal-Allard (D-CA) and Congressman Mike Simpson (R-ID) today introduced the Newborn Screening Saves Lives Reauthorization Act, which reauthorizes critical federal activities that assist states in improving and expanding their newborn screening programs, supporting parent and provider newborn screening education, and ensuring laboratory quality and surveillance.
“Congress must reauthorize the Newborn Screening Saves Lives Act of 2008 because no baby should die or suffer the devastating health consequences of a condition that could have been treated or prevented if identified through newborn screening,” said Dr. Jennifer L. Howse, President of the March of Dimes. “The Newborn Screening Saves Lives Reauthorization Act will continue federal initiatives that provide vital guidance and assistance to state newborn screening programs.”
“Newborn screening not only transforms and saves lives – it saves money,” said Congresswoman Roybal-Allard. “In my home state of California, newborns are screened for more than 40 preventable and treatable conditions – and for every one dollar California spends on screening, it yields a benefit of over $9 as we prevent disease in children who are diagnosed with these treatable conditions. We must work together to quickly pass this important bipartisan reauthorization so that state newborn screening programs can keep up with the latest science and technological advances.”
“I am proud to introduce legislation to reauthorize the Newborn Screening Saves Lives Act,” said Congressman Simpson. “The Reauthorization Act provides critical federal support for states to develop and expand newborn screening programs. The bill reflects the realities of reduced budgets Washington, but continues and strengthens the well established system of monitoring and evaluating infant conditions soon after birth. Just one small blood sample from the newborn’s foot identifies infants with genetic or other conditions that can be treated quickly and effectively, saving and improving thousands of lives.”
A key concern for the March of Dimes is the continuing operation of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC). The SACHDNC’s charter will expire in April if the Newborn Screening Saves Lives Act is not reauthorized or the Department of Health and Human Services fails to take action to extend its term. Allowing the committee to expire would eliminate a well-established and scientific process for evaluating newborn screening and providing guidance to states. More than 70 organizations wrote to Administrator Mary Wakefield urging the continuation of the SACHDNC.
Prior to passage of the 2008 legislation, the number and quality of screenings varied widely from state to state. In 2007, only 10 states and the District of Columbia required infants to be screened for all “core conditions” recommended by the SACHDNC. Those numbers prompted the March of Dimes to lead a nationwide campaign to urge all states to adopt a full newborn screening panel to help close the gaps that existed among states. Today, 44 states and the District of Columbia require screening of at least 29 of the 31 treatable core conditions.
This year marks the 50th anniversary of newborn screening. In the U.S., newborn screening is a state-run public health program that identifies infants who may have genetic, metabolic or hearing disorders that may not be apparent at birth. If left untreated, these conditions can cause serious illness, lifetime disabilities and even death. In many cases, early diagnosis and treatment can prevent or lessen the severity of these conditions. Approximately 1 in every 300 newborns in the U.S. has a condition that can be detected through screening.
Newborn screening began in 1963 when Massachusetts first screened for PKU (phenylketonuria) using a test developed by March of Dimes-funded researcher Robert Guthrie, M.D. More tests followed, including those for congenital adrenal hyperplasia and biotinidase deficiency, which also were developed with support from the March of Dimes.
“As we approach the 50th anniversary of newborn screening, I’m proud of the central role the March of Dimes has played in the development and adoption of this vital public health program,” said Dr. Howse. “We are saving infants’ lives and giving thousands each year a chance for healthy development.”