Newborn screenings: how does Arizona rank?

PHOENIX (3TV/CBS 5) - A simple heel prick test given to every newborn in the United States saves thousands of lives each year. The federal government recommends screening for more than three dozen conditions and diseases. But no state does all of them, including Arizona.

It can lead to delays in getting babies the treatment they need, which can mean developmental delays or, in some cases, even death. “We have to buy her one,” Samantha Lackey said. Samantha is an inquisitive, energetic, kind three-year-old. Her mother, Samantha, said she’s come a long way.

“Early intervention saved her life,” Lackey said. “When Samantha was born, she had no signs of spinal muscular atrophy. She could move her arms and legs and head,” she continued. But at three weeks old, that all changed. “Our neurologist said he’d never seen a baby regress so quickly,” she explained.

Lacey knew she was a carrier of spinal muscular atrophy or SMA. It’s a genetic disease affecting the nervous system and voluntary muscle movement, but she never expected her daughter would develop it. She said doctors only tested for it at her urging. “We decided gene therapy was our best option for her,” she said. Lackey said she later learned that while other states test for SMA in their newborn screenings, Arizona doesn’t. “I was mad when I found out that Arizona didn’t screen,” she said.

It’s a simple heel prick test that’s done in the hospital or the doctor’s office soon after birth. The Centers for Disease Control finds it helps detect conditions in one out of every 300 babies. “It can make a difference in their development, in their growth, in our ability to know what to anticipate,” Dr. Kristin Struble, a Phoenix pediatrician, said. “I will see 5 a year, and again, some of those are false negatives or positives, but it sure gives us that piece of mind,” she explained.

The Federal Department of Health and Human Services is behind the “Recommended Uniform Screening Panel” known as the RUSP. However, states are left to decide which ones they’ll implement. In Arizona, they only test for 33 of the 37 recommended conditions. Those not on the list include a metabolic disorder, a condition that impacts muscle tone and motor skills, and two disorders that affect normal cell activity.

“Different states have different bills that have passed in response to newborn screening, and it’s decentralized,” Shadie Tofigh with the March of Dimes Arizona said. The March of Dimes Arizona pushed for legislation in the state that it to come into compliance with the RUSP by 2025. Moving forward, when the feds add a condition to the RUSP, Arizona will have two years to follow suit.

“At the state level, it just takes time for the labs to update the resources and then disseminate that information out,” Tofigh said. Lackey is one of the parents who lobbied for the change to get SMA added to Arizona’s panel. “This bill will help families navigate really hard diagnosis from the beginning early that will give them hope for their future,” she said.

Lackey said she’s concerned about that 2-year delay and that she hopes state lawmakers will revisit it. “For some of these conditions, these kids don’t have two years to hope that a doctor catches their rare diagnosis,” she said. The results of the testing usually come back in 5 to 7 days, so if a baby tests positive for one of these conditions, the state will alert the family and their doctor.

Arizona is one of 13 states that does the screening twice. The first heel prick happens at the hospital between 24 and 36 hours. The second is typically when the baby is 5 to days old.

correction: This article has been updated with the correct name for Samantha.

Copyright 2023 KTVK/KPHO. All rights reserved.