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Newborn screening law isn’t getting followed, says lawmaker

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(Harrisburg) — A 2014 state law was supposed to require hospitals test newborns for a half dozen disorders.

But a state legislator says the law isn’t being followed.

Democratic Representative Angel Cruz of Philadelphia says an advisory board at the Department of Health didn’t implement his law that was signed by Republican Governor Tom Corbett in 2014.

Cruz says instead of mandating testing of newborns for six different disorders, the board has made the testing optional.

He’s stumped.

“Why would they want to stop this? Why are they not letting hospitals do this test when this already became law? Beyond me. This board needs to be revised or removed,” says Cruz.

Cruz says three families have already come to him, saying that disorders could have been caught earlier in their babies if the required newborn testing was in place.

He adds: “They could’ve addressed the problem, they could’ve given medication to the child to not go through the pains that the child went through, and find other options, but they did not do that.”

Cruz says one of those babies has since died.

In an extensive statement, the state Department of Health says the tests have been excluded from the mandated list because there is concern about the reliability of the results and the availibility of treatments. It says in the past couple of months, some of those concerns have been addressed and its added some tests to its mandated list, and it will continue to evaluate tests going forward. At the time the legislation was signed by Governor Corbett, the Department says its contracted labs didn’t even have the ability to conduct the tests. 

Meanwhile, Cruz is proposing a bill that would limit the power of the newborn screening advisory board.

It’s currently in the House Health Committee.