SB 194

This bill requires that, in addition to the other congenital and metabolic

disorders for which testing is currently required under rules established by the

Department of Health Services, the attending physician, nurse-midwife, or in

certain circumstances, other birth attendant, must ensure that every infant born

undergoes testing for globoid cell leukodystrophy, also known as Krabbe disease,

which is a lysosomal storage disorder. Current law requires that an attending

physician or nurse-midwife ensure that every infant born undergoes testing for

certain congenital and metabolic disorders prior to the infant's discharge from the

hospital or maternity home. For infants born elsewhere, the attending physician,

nurse-midwife, or other birth attendant must ensure that the infant is tested within

a week of birth. As authorized by current law, DHS specifies by rule the congenital

and metabolic disorders for which newborn infants are to be screened. Current law

allows an exception to the testing requirement if the parents or legal guardian object

on the basis of a conflict with religious tenets and practices or with their personal

convictions.

Under the bill, for infants born in a hospital or maternity home, the attending

physician or nurse-midwife must ensure testing for Krabbe disease is completed

before the infant is discharged or within one week of birth, if the infant has not yet

been discharged. For births occurring outside a hospital or maternity home setting,

the attending physician, nurse-midwife, or other birth attendant must ensure

testing is done within one week of birth. The parental objection exemption under

current law also applies to the testing required under this bill.

The bill also requires DHS to evaluate on a biennial basis the appropriateness

of mandatory newborn testing for lysosomal storage disorders in addition to the

testing for Krabbe disease. If DHS determines that testing for one or more other

lysosomal storage disorders is appropriate, DHS may promulgate rules adding to the

list of disorders for which newborn testing is required.