The Alabama House of Representatives passed bipartisan legislation Thursday approving a Newborn Screening Panel to check for genetic conditions in newborn babies.
State Rep. Phillip Rigsby sponsored the bill after meeting a boy who has a rare genetic condition. The bill passed 98-0 and goes to the Senate.
“This bill has the namesake for a young man I met last year at a breakfast – Zack Thomas,” Rigsby (R-Huntsville) said. “He has MPS1.”
The state screens for only 33 of the 37 genetic conditions that the federal government recommends. The bill (HB77) adds those four remaining tests — MPS1, Pompey, MPS2 and JM2 – and requires the Alabama Department of Public Health provide a timeline for adding them.
“House Bill 77 is a bill that was agreed on by the Alabama Department of Public Health and the Alabama rare group which services the rare disease community here in Alabama,” said Rigsby. “The Newborn Screening Panel of the Department of Health and Human Service. At the federal level recommends that we test for 37 unless a parent objects to that.
“Currently we only screen for 33 of the 37 diseases. The four disease panels that we do not test for are MPS1, Pompey, MPS2, and JM2.”
Rigsby said Zach and his two siblings are among families where all three of the children were born with this disorder.
“With these diseases early treatment is the key for these families,” said Rigsby. “A lot of times they get no answers if they are not screened for these diseases. They go through a diagnostic journey trying to figure out what is happening to my newborn; and so this will help screen these newborns.”
Rigsby said identifying the condition early will allow healthcare professionals to act to “increase their quality of life” as early as possible.
“The Alabama Department of Public Health will take on those tests and add those tests in a timely manner with the exception of if there is any funding or any workforce issues in which case they would publicly have to let us know,” he said.
Zach and his mother were on hand in the gallery to watch the House pass the bill and they were given a round of applause.
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