OKLAHOMA CITY – Each year, newborns in the U.S. are screened for a variety of genetic, metabolic, hormonal, and functional conditions that are not otherwise apparent at birth. The federal Recommended Uniform Screening Panel (RUSP) currently includes 61 conditions, but each state decides which to include in their newborn screening program. Currently, Oklahoma screens for 57 conditions plus two point-of-care conditions. After discovering that Oklahoma has not been providing all the recommended federal screenings, Sen. Carri Hicks, D-Oklahoma City, has filed Senate Bill 1464 to ensure the state Health Department's (OSHD) 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.”
The bill was requested Colin McEwen, who has a condition that could have been identified at birth through a simple 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.”
The senator also worked on the bill with Women in Government and the EveryLife Foundation, of which McEwen is a member.
The national guidelines are recommended by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), which meets regularly to discuss proposals from parent advocates, organizations, and experts to keep newborn screenings up to date. Their recommendations are then reviewed by the U.S. Secretary of Health. They then together set the RUSP, which currently includes 35 core conditions and 26 secondary conditions, to serve as a guide to help states form their own screening program.
For more information, contact: Sen. Hicks: (405) 521-5543 or Carri.Hicks@oksenate.gov