ARIZONA HOUSE OF REPRESENTATIVES Fifty-seventh Legislature First Regular Session
	Senate: APPROP DP 9-0-1-0 | HHS DP 6-0-1-0 | 3^rd Read 25-3-2-0 House: HHS DP 12-0-0-0

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SB1076: newborn screening; Duchenne muscular dystrophy

Sponsor: Senator Shope, LD 16

Committee on Appropriations

Overview

Adds Duchenne muscular dystrophy (DMD) to the state's newborn screening panel effective October 1, 2027, or two years from the date that DMD is added to the Recommended Uniform Screening Panel (RUSP).

History

The Director of the Department of Health Services (DHS) is required to establish a newborn screening program to ensure that the testing for congenital disorders and the reporting of hearing test results are conducted in an effective and efficient manner. The newborn screening program must include all congenital disorders that are included on the recommended uniform screening panel (RUSP) adopted by the Secretary of the U.S. Health & Human Services (HHS) for both core and secondary conditions (A.R.S. § 36-694).

Congenital disorders that are added to the core and secondary conditions list of the RUSP must be added to this state's newborn screening panel within two years after their addition to the RUSP. The newborn screening program must include an education program for the general public, the medical community, parents and professional groups. The DHS Director must designate the State Laboratory as the only testing facility for the program, except that the DHS Director may designate other laboratory testing facilities for conditions or tests added to the newborn screening program on or after July 24, 2014 (A.R.S. § 36-694).

The State Laboratory screens every newborn in Arizona twice, once at 24-36 hours of age and again at 5-10 days old, for 35 different conditions, including but not limited to sickle cell anemia, cystic fibrosis, hearing differences and congenital heart defects (DHS).

Muscular dystrophies are a group of genetic conditions characterized by progressive muscle weakness and atrophy. DMD is a type of muscular dystrophy that primarily affects skeletal muscles used for movement and cardiac muscles. DMD occurs almost exclusively in males and the conditions differ in its severity, age of onset and rate of progression (U.S. National Library of Medicine).

Provisions

1. Requires DHS to add DMD to the state's newborn screening panel in addition to the congenital disorders added to the state's newborn screening panel. (Sec. 1)

2. Directs DHS, in writing, to notify the Director of the Arizona Legislative Council within 10 days after the date that DMD is added to the RUSP. (Sec. 2)

3. Makes effective on the earlier of either:

a) October 1, 2027; or

b) two years from the date DMD is added to the RUSP adopted by the U.S. Secretary of the HHS. (Sec. 2)

4. Makes technical and conforming changes. (Sec. 1)

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8.                   SB 1076

9. Initials AG/AB    Page 0 Appropriations

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