PHOENIX (3TV/CBS 5) - When it comes to screening for potentially deadly diseases in newborns, Arizona is the worst in the country. A bill in the state House could change that. The federal government recommends that states screen babies for 35 diseases that have known, proven treatments. Arizona only tests for 31 of those conditions. Ashley Pantier of Phoenix says her two children are the perfect example of why that needs to change.

Christopher Pantier

Three-year-old Christopher Pantier of Phoenix wasn't diagnosed with spinal muscular atrophy (SMA) until he was 20 months old because the treatable condition is not on Arizona's required newborn screening list. 

Like most 3-year-olds, Christopher Pantier is energetic and happy. But unlike most kids his age, he’s still learning to walk and stand from the floor unassisted. He has spinal muscular atrophy, or SMA, which, over time, causes muscle loss all over the body.

“Had he been born in another state besides Arizona that does do newborn screening for SMA, Christopher would have none of the challenges that he faces today,” Ashley said.

SMA is not on the required newborn screening list in Arizona. Ashley is pleading with state lawmakers to put it there by passing Senate Bill 1680, which would add SMA, MPS1, Pompeii, and X-A-L-D -- all treatable diseases -- to the list so parents could start treatment for their babies as early as possible. Christopher’s little sister Emily also has SMA.

“Emily was tested at birth because we knew to test for it, not because Arizona screens for it,” Ashley said.

March of Dimes Arizona, which put together a video testimony for legislators, says no state tests for fewer conditions at birth than Arizona does.

“When you get pregnant, when you go to have a baby, you assume that the state is using all the medical advances necessary to have a healthy baby. And unfortunately, that’s not the case right now,” said Maternal Infant Health Director Breann Westmore. “Imagine being those families who are caught with a condition that we don’t test that the state has made that decision for you.”

SB 1680 would also automatically update the required newborn screening list any time the federal government adds more conditions to its recommended list. Ashley says she’s thinking of families in the future who get those tough diagnoses that can change the course of their babies’ lives.

“Every baby deserves the chance that Emily has been given, and they shouldn’t need a guardian angel brother to give them that chance,” she said.

Fortunately for little Christopher, treatment has stopped the progression of SMA. He’s still progressing through physical therapy.

“It can only go up from here, but no one knows to what extent,” Ashley said.

SB 1680 has bipartisan support and has passed the Senate Health Committee.

 

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