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House Bill Introduced to Reauthorize Newborn Screening Programs, SACHDNC

NEW YORK (GenomeWeb News) – A bipartisan pair of lawmakers in the US House of Representatives have introduced the Newborn Screening Saves Lives Reauthorization Act, which has several provisions to help guide and support disease-risk screening programs across the US.

The act would continue several programs launched under the initial Newborn Screening Saves Lives Act, which passed in 2008 and funds screening programs for genetic, metabolic, and other diseases in newborns.

It also would reauthorize the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), which maintains the Recommended Uniform Screening Panel (RUSP) that the Department of Health and Human Services and the states use as they decide which genetic diseases should be screened for at birth.

As GenomeWeb Daily News reported recently, SACHDNC is scheduled to expire in April, and advocates such as the March of Dimes Foundation and Genetic Alliance have been urging Congress to extend the committee's tenure even if the full Newborn Screening Act is not reauthorized soon.

Before SACHDNC was created about a decade ago, there was wide variety between the states in the number of diseases they screened for and the quality of the screens that were used – some were screening for as many as 36 diseases while others tested for as few as four, according to the March of Dimes.

Now, 44 states and the District of Columbia require screens for at least 29 of the 31 treatable conditions listed on the RUSP.

The new act, introduced by Rep. Lucille Roybal-Allard (D - Calif.) and Rep. Mike Simpson (R - Idaho), reauthorizes the Health Resources and Services Administration to fund grants to states to expand and improve screening programs, educate parents and healthcare providers about screening, and improve follow-up care. It also reauthorizes two HRSA resources for physicians and parents, the Clearinghouse for Newborn Screening Information and the National Newborn Screening and Genetic Resource Center.

The bill also would reauthorize the Centers for Disease Control and Prevention's Newborn Screening Quality Assurance Program and authorize a CDC grant program that would provide technical assistance to state newborn screening programs for tracking the patient outcomes of infants identified through newborn screening.

In addition, the bill would reauthorize research funding by continuing the Hunter Kelly Newborn Screening program at the Eunice Kennedy Shriver National Institute of Child Health and Development. That program supports science aimed at identifying new treatments for conditions that can be detected through newborn screening, as well as efforts to develop new screening technologies.

Rep. Roybal-Allard and Rep. Simpson, who also introduced the original Newborn Screening Saves Lives Act, have argued that newborn screening saves both lives and money.

In remarks delivered to the House this week, Simpson gave the example of severe combined immunodeficiency, one of the conditions recommended for newborn screening, which can cost over $2 million to treat in the first two years of life but which can be treated in the first three months at a cost of $100,000.

"In my home state of California, newborns are screened for more than 40 preventable and treatable conditions – and for every $1 California spends on screening, it yields a benefit of over $9 as we prevent disease in children who are diagnosed with these treatable conditions," she said in a statement this week.

The bill has been referred to the House Committee on Energy and Commerce.