Spinal Muscular Atrophy Bill to be Introduced to Nebraska Legislature

Children’s supports LB825, which seeks to add spinal muscular atrophy (SMA) to the list of screened diseases for newborns. In the next Nebraska legislative session, Rodrigo López, Children’s interim president & CEO; Christopher Maloney, M.D., Ph.D., executive vice president, chief clinical officer & physician-in chief, or Geetanjali Rathore, M.D., Pediatric Neurology, will testify in favor of the bill, which was introduced by State Senator Robert Hilkemann.

The date for the SMA hearing is scheduled for Jan. 22 at 1:30 p.m. in the Health and Human Services Committee.

“We are grateful to be partnering with Sen. Hilkemann, who, along with Children’s, has a history of advocating bills that aim to protect the lives of all babies born in Nebraska,” said López. “We look forward to testifying on behalf of this important legislation that will provide better outcomes for children with SMA.”

SMA is caused by a deficiency of a motor neuron protein called SMN (survival of motor neuron). It affects the central nervous system, peripheral nervous system and voluntary muscle movement. If identified by a blood test within 24 hours of birth, treatment can begin with FDA-approved drugs that can stop the advancement of the disease.

“Testing for SMA at birth is vital, as steps can be taken proactively to intervene before symptoms occur and muscles begin to atrophy,” said Dr. Maloney.

Liz Lyons, Government Affairs, says that this legislation would put Nebraska on the forefront of the effort to save the lives of babies born with SMA. “We are proud that Children’s and Nebraska are leading the way to identify children who should receive care prior to the appearance of symptoms,” she said. “With early testing, the outcomes for families facing an SMA diagnosis will be completely changed.”

Nebraska law currently requires all babies to be tested for 32 core conditions to identify and treat newborns in time to prevent or reduce problems. The SMA test would be added to that list and is provided at no cost to the family.

Read LB825

Leave a Reply

Your email address will not be published. Required fields are marked *