Staff Reports
INDIANAPOLIS — A bill filed by Rep. Ryan Lauer, R-Columbus, that would add a rare genetic disorder to the state’s newborn screening panel has been approved by the House and now moves to the Senate.
The Indiana House of Representatives voted unanimously Thursday to add ALD, which is Adrenoleukodystrophy, to the newborn screening panel in Indiana. The rare genetic disease predominately affects males, causing brain injury and behavioral and neurological issues. ALD affects about one in every 17,000 people.
“ALD can quickly cause significant neurological damage at any age,” Lauer said. “It is critical to test infants for ALD because symptoms vary and signs of this disease typically remain dormant until it is too late. These screenings can let parents know early if their child has ALD so they can be treated to prevent irreversible damage.”
Symptoms may vary and can develop anytime between infancy and adulthood. In children, symptoms can include hyperactivity, learning disabilities, loss of previously acquired skills and cognitive deficits. ALD can result in death within two to three years from the start of neurological symptoms.
Stem cell transplants can improve outcomes for children by stopping the disease from progressing, if caught in the early stages, according to the Mayo Clinic. Lauer said testing for ALD at birth is crucial because existing treatment cannot undo damage done by the fast-acting disease.
Indiana’s newborn screening panel currently includes tests for more than 50 other conditions such as sickle cell anemia and critical congenital heart disease. By adding ALD to the panel, Indiana would have every test from the U.S. Department of Health and Human Services’ recommended uniform screening panel.
House Bill 1129 now moves to the Senate, Lauer said.
