COLUMBIA — South Carolina lawmakers are considering legislation that would require neonatal testing for certain genetic disorders and diseases in addition to the existing newborn screenings.
A House subcommittee voted unanimously Wednesday in favor of what's known as Dylan's Law. The proposal initially called for screening for six genetic disorders, but the panel narrowed the bill's scope to three disorders, citing the fiscal impact to test for the additional diseases.
The legislation would require the Department of Health and Environmental Control to test for Hurler syndrome, Krabbe disease and Pompe disease in addition to the 53 conditions the agency already screens.
Rep. John McCravy, the bill's author, said the proposal backed by both Democrats and Republicans could pave the way for additional testing of other genetic disorders in the future.
"We discovered that South Carolina was a state that did not test for this or similar disorders," the Greenwood Republican said.
According to the Mayo Clinic, Krabbe disease is an inherited disorder that destroys the protective coating of nerve cells. It affects one in 100,000 people in the U.S., and while there is no cure, supportive care can assist with treatment.
The bill was named after Dylan Emery, who was diagnosed with Krabbe disease at six months and died at 11 months from the effects of the nervous system disease.
Dylan's parents testified before the House subcommittee about the condition's impacts on their son, who lost his eyesight, his hearing, and his ability to swallow food and smile. Melissa Emery, Dylan's mother, said it warms her heart knowing her son's life has purpose and could have a lasting legacy on the state.
"It's so exciting just to know that my baby's struggle and fight is going to make a difference in others' lives," she said. "As hard as it is, it's a little bit of happiness that I can find just knowing he fought so hard for other babies."
The Department of Health and Human Services has a "Recommended Uniform Screening Panel" list of recommended disorders for states to screen as a part of their newborn screening programs. DHEC director of legislative affairs Rick Caldwell said his agency runs separate tests for each condition on the recommended list.
"They've identified these 53 types of conditions for testing, and when a child is born, the hospital will draw blood from the child and send it to the department," Caldwell said. "We actually run all of those tests associated with those diseases."
The amended legislation will now go before the full Medical, Military, Public and Municipal Affairs Committee.
"It's really a feel-good bill," McCravy said. "I get emotional talking about this thing. It's really been a good thing."