The Alabama House of Representatives on Thursday passed a bipartisan bill authorizing a Newborn Screening Commission to test newborns for genetic conditions.

State Rep. Philip Rigsby sponsored the bill after meeting with a boy with a rare genetic disease. The bill passed 98-0 and will be sent to the Senate.

“This bill is named after a young man I met at breakfast last year, Zach Thomas,” said Rigsby (R-Huntsville). “He has MPS1.”

The state tests for only 33 of the 37 genetic conditions recommended by the federal government. The bill (HB77) adds the remaining four tests (MPS1, Pompeii, MPS2, and JM2) and requires the Alabama Department of Public Health to provide a timeline for adding them.

“House Bill 77 is a bill agreed to by the Alabama Department of Public Health and the Alabama Rare Group, which serves the rare disease community here in Alabama,” Rigsby said. “Department of Health and Human Services Newborn Screening Committee. At the federal level, we recommend testing 37 points unless parents object.

“Currently, we only test for 33 of the 37 diseases. The four disease panels we do not test for are MPS1, Pompeii, MPS2, and JM2.”

Mr Rigsby said Zach and his two brothers are one of a family in which all three children were born with the disorder.

“Early treatment is key for families with these illnesses,” Rigsby said. “If you don't get tested for these diseases, you often don't get the answers. They go on a diagnostic journey trying to understand what's going on with my newborn. So this… It will help us screen these newborns.”

Rigsby said identifying symptoms early allows health care workers to take action to “improve quality of life” as soon as possible.

“The Alabama Department of Public Health will take on these tests and add more tests in a timely manner, except when there are funding or workforce issues, in which case the public must notify us.” he said.

Zach and his mother watched the bill pass in the House from the audience and were greeted with applause.

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