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ARIZONA STATE SENATE
Fifty-Sixth Legislature, Second Regular Session
REVISED
AMENDED
newborn screening; Duchenne muscular dystrophy
Purpose
Effective October 1, 2026, or two years from the date Duchenne muscular dystrophy is added to the Recommended Uniform Screening Panel (RUSP), expands the Department of Health Services' (DHS) newborn screening requirements to include screening for Duchenne muscular dystrophy.
Background
The newborn screening program was established to ensure that testing for congenital disorders and reporting of hearing test results for newborns is conducted in an effective and efficient manner. The Arizona State Public Health 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).
Duchenne muscular dystrophy is a genetic condition occurring almost exclusively in males, characterized by progressive muscle weakness and atrophy, primarily affecting skeletal muscles used for movement as well as cardiac muscle. Muscle weakness tends to appear in early childhood and worsens rapidly. Affected children may have delayed motor skills such as sitting, standing or walking, and are usually wheelchair-dependent by adolescence. This condition is associated with a heart condition called cardiomyopathy that weakens cardiac muscle and prevents the heart from pumping blood efficiently, leading to arrhythmia, shortness of breath, fatigue and swelling of the legs and feet. Males with Duchenne muscular dystrophy typically live into their twenties (U.S. National Library of Medicine).
The RUSP is a list of disorders recommended by the Secretary of the Department of Health and Human Services (U.S. HHS) for states to screen as part of their state universal newborn screening programs. Disorders on the RUSP are chosen based on evidence supporting the potential net benefit of screening, the ability of states to screen for the disorder and the availability of effective treatments. It is recommended that every newborn be screened for all disorders on the RUSP (HRSA).
The Joint Legislative Budget Committee fiscal note estimates that S.B. 1020 would result in an ongoing impact of $116,400 to the state General Fund to pay claims for newborns added to state health insurance plans and state Medicaid plans each year (JLBC).
Provisions
1. Requires DHS to add Duchenne muscular dystrophy to the state's newborn screening panel.
2. Requires, within 10 days of Duchenne muscular dystrophy being added to the RUSP, the Director of DHS to notify the Director of Legislative Council in writing.
3. Makes technical and conforming changes.
4. Becomes effective on the earlier of:
a) October 1, 2026; or
b) two years from the date Duchenne muscular dystrophy is added to the RUSP adopted by U.S. HHS.
Amendments Adopted by Committee
1. Adds an effective date of October 1, 2026, or if earlier, the date that Duchenne muscular dystrophy is added to the RUSP.
2. Requires, within 10 days of Duchenne muscular dystrophy being added to the RUSP, the Director of DHS to notify the Director of Legislative Council in writing.
Amendments Adopted by Committee of the Whole
· Delays the effective date to the earlier of:
a) October 1, 2026; or
b) two years from the date Duchenne muscular dystrophy is added to the RUSP.
Revised
· Updates the fiscal impact statement.
Senate Action House Action
HHS 1/30/24 DPA 7-0-0 3rd Read 3/4/24 24-4-2-0
APPROP 2/6/24 DP 7-2-1
Prepared by Senate Research
March 5, 2024
MM/DM/slp