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Congress is considering newborn screening legislation

When babies are born in America, they undergo a newborn screening process. This process helps to identify diseases, birth injuries and genetic medical conditions that might otherwise go undiagnosed until after it has become too late to treat these conditions properly and effectively. It is therefore critical that newborn screening labs are processed without delay.

However, a major Midwestern newspaper published an investigation into newborn screening last autumn which indicates that infants have been dying and have been suffering debilitating disabilities due to delays in processing newborn screening labs. It seems that infants whose labs need to be processed on weekends or holidays may be at greatest risk from suffering delay-related consequences.

In response to this disturbing investigation, Congress is considering passage of the Newborn Screening Saves Lives Act. So far, the Senate has passed a version of the bill and another version has cleared a House committee. The bill will hopefully be passed promptly by the House, given that it serves two critical functions.

First, the bill includes provisions that would compel hospitals, labs and screening programs to improve the timeliness of the screening process. Second, the bill would require these organizations to track the newborn screening process in a streamlined and systematic way.

Given that newborn screening programs and processes currently vary significantly in terms of timeliness and quality, this federal bill seems urgently necessary. Hopefully it will pass quickly for the benefit of infants nationwide. Because ultimately, it is not an exaggeration to observe that each day this bill waits for passage, infants risk death and disability as a result of preventable screening delays.

Source: Milwaukee Journal Sentinel, "Legislation to end delays in newborn screening advances in U.S. House," Ellen Gabler, April 3, 2014

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