TRENTON – The Senate Health Committee unanimously released a bill that would provide some hope for newborns with a rare disorder.
S2137 would provide for screening newborns for adrenoleukodystrophy.
Adrenoleukodystrophy is a rare, inherited disorder that can lead to damage to the brain and adrenal glands, and in its most aggressive form can lead to death in two to five years after the age of onset, according to the bill sponsored by Senate President Steve Sweeney.
Amendments made today include clarifying conditions that would be met before the test, such as ensuring a reliable test and methodology exists, and authorizing the Health Department to charge a reasonable fee.
One witness told a personal story about the need for the bill.
Taylor Kane, 14, of Mount Laurel said when she was 3 her dad was diagnosed with the condition. The disease attacks the spinal cord, affecting one in 17,000. Her father lost his ability to walk, talk and swallow, and eventually was hospitalized. He stayed in a hospice condition for two years before dying in 2003.
ALD can be cured with a bone marrow transplant if it is diagnosed before conditions set in, she said. Newborn screening would help this, she testified.