OKLAHOMA CITY (KFOR) – A new bill filed in the Oklahoma Legislature wants to update the state’s list of newborn screening conditions to match the federal recommendations.
Newborns are screened at birth for a number of genetic, metabolic, hormonal, and functional conditions.
The federal Recommended Uniform Screening Panel (RUSP) currently includes 61 conditions, but each state decides which to include in their newborn screening program.
Senate Bill 1464, filed by Sen. Carri Hicks, D-Oklahoma City, wants to ensure the state health department’s screening list matches the federal one, if possible.
“One in three newborns has a condition that can be detected through screening, which ensures timely delivery of life-saving treatments, and other therapies that can improve quality of life,” Hicks said. “This issue was brought to me by a constituent whose life has been negatively impacted because he wasn’t screened for his condition at birth, causing him terrible hardships throughout his life. My bill will protect future Oklahomans by requiring Oklahoma’s screening list be updated regularly to mirror the federal RUSP.”
Hicks says the bill was requested by Colin McEwen, who has a condition that could have been identified at birth through newborn screening, but since it wasn’t, has led to years of misdiagnosis and extremely high healthcare costs.
“I’ve survived over 20 years with an undiagnosed disease that nearly cost me my life, left me quadriplegic and in financial ruin—all because I wasn’t given a simple blood test at birth,” McEwen said. “I’m grateful for Senator Hicks’ determination to ensure no other Oklahoman has to suffer through the nightmare that my family and I have. This simple change will positively impact the lives and health of future Oklahomans and help make our state a leader in combatting genetic diseases.”
Disorders on the RUSP are chosen based on evidence that supports the potential net benefit of screening, the ability of states to screen for the disorder, and the availability of effective treatments. It is recommended that every newborn be screened for all disorders on the RUSP.