Bill would add Spinal Muscular Atrophy to infant screening panel
State Senator Robert Hilkemann has introduced LB825 to add spinal muscular atrophy (SMA) to the list of screened diseases for newborns.
Hilkemann stated, “I am proud to once again carry legislation that aims to protect the lives of all babies born in Nebraska, and to have Children’s Hospital & Medical Center as a partner in this effort.”
SMA is the number one genetic cause of death for infants. It robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe.
The disease is caused by a mutation in the survival motor neuron gene 1. Without enough of the SMN protein, nerve cells cannot function properly and eventually die, leading to debilitating and often fatal muscle weakness (SMA State Fact Sheet - NE, 2019).
The United States Department of Health and Human Services added SMA to the Recommended Uniform Screening Panel in July 2018.
“This legislation would put Nebraska on the forefront of the important effort to save the lives of babies born with SMA. One in every 50 people is a genetic carrier of SMA – a disease that historically doesn’t get diagnosed until a child is showing serious symptoms. Adding SMA to the newborn screening panel in Nebraska creates an opportunity to change the course of the disease and lead to earlier treatment intervention,” said Kenneth Hobby, President, Cure SMA.
“We thank Sen. Hilkemann for his leadership, and urge the Nebraska legislature to quickly approve this bill during the 2020 legislative session.”
Nebraska law requires all babies to be tested for 32 core conditions. In 2018, this resulted in identifying and treating 50 newborns in time to prevent or reduce problems associated with identified conditions (2018 Annual Report Newborn Bloodspot Screening, 2018).
“It is very important that the legislative body of the State of Nebraska support LB 825 to add SMA to the Nebraska Newborn Screening Panel.
The Nebraska Newborn Screening Advisory Committee has recommended adding SMA to our panel so we can identify children as soon as possible so they can receive lifesaving treatment,” said Robert Rauner, member, Newborn Screening Advisory Committee.
“Support of this bill will make this lifesaving treatment available to the newly screened babies that are identified via SMA newborn screening.”
Senator Robert Hilkemann represents District 4, encompassing west Omaha, in the Nebraska Legislature. He was elected in 2014 and re-elected in 2018. He serves on the Appropriations Committee and is the chairperson of both the Committee on Committees and the State-Tribal Relations Committee.