STATEHOUSE (Feb. 19, 2020) — State Rep. Ryan Lauer’s (R-Columbus) legislation that would add a rare genetic disorder to the state’s newborn screening panel could soon be law.
Adrenoleukodystrophy, or ALD, is a genetic disease predominately affecting males that causes injury to the brain and leads to behavioral and neurological issues. According to the National Organization for Rare Disorders, ALD affects approximately 1 in 17,000 people.
“Because the signs of ALD are so hard to catch and it progresses quickly, it is critical to get tested for this disease early,” Lauer said. “Symptoms vary and can be misdiagnosed as attention deficit disorder or other learning disabilities due to the cognitive damage ALD causes. Signs of this disease typically show up when a child is 4 to 10 years old but once the symptoms appear, it's too late to reverse them.”
In children, symptoms can include hyperactivity, learning disabilities, a loss of previously acquired skills and cognitive deficits later on. ALD causes irreversible damage to the brain and in most cases, children lose their sight, hearing and mobility, leading to a vegetative state and ultimately resulting in death within 2 to 3 years from the start of neurological symptoms.
Lauer said while there is no cure for ALD, certain treatments like bone marrow transplants or modern gene therapy can stop the disease from progressing if caught in the early stages.
“By adding ALD to Indiana’s newborn screening panel, this disease could be caught quickly, helping give these children normal and healthy lives,” Lauer said.
Currently, Indiana’s newborn screening panel includes tests for over 50 other conditions such as sickle cell anemia and critical congenital heart disease. By adding ALD to the panel, Indiana would include every test from the U.S. Department of Health and Human Services’ Recommended Uniform Screening Panel.
House Enrolled Act 1129 passed out of the Senate unanimously and now heads to the governor for consideration as a new law.
State Rep. Ryan Lauer (R-Columbus) represents House District 59,
which includes portions of Bartholomew County.
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