SB 1020 — newborn screening; Duchenne muscular dystrophy

Fifty-sixthSenate LegislatureEngrossed Healthnewborn andscreening; Human Services Second Regular Session S.B.

1020Duchenne PROPOSEDmuscular dystrophy State of Arizona Senate Fifty-sixth Legislature Second Regular Session SENATE AMENDMENTSBILL TO1020 S.B.AN ACT AMENDING SECTION 36-694, ARIZONA REVISED STATUTES;

1020RELATING (ReferenceTO toTHE printedNEWBORN bill)SCREENING PagePROGRAM. 2, line 1, strike "ON OR BEFORE DECEMBER 31, 2024," After line 37, insert:

"Sec.(TEXT OF BILL BEGINS ON NEXT PAGE) - i - S.B.

1020 Be it enacted by the Legislature of the State of Arizona:

Section 1.

Section 36-694, Arizona Revised Statutes, is amended to read:

36-694.

Report of blood tests;

newborn screening program;

committee;

fee;

definitions A.

When a birth or stillbirth is reported, the attending physician or other person required to report the birth shall state on the certificate whether a blood test for syphilis was made on a specimen of blood taken from the woman who bore the child or from the umbilical cord at delivery, as required by section 36-693, and the approximate date when the specimen was taken.

B.

When a birth is reported, the attending physician or person who is required to report the birth shall order or cause to be ordered tests for certain congenital disorders, including hearing disorders.

The results of tests for these disorders must be reported to the department of health services.

The department of health services shall specify in rule the disorders, the process for collecting and submitting specimens and the reporting requirements for test results.

C.

When a hearing test is performed on a newborn, the initial hearing test results and any subsequent hearing test results must be reported to the department of health services as prescribed by department rules.

D.

The director of the department of health services shall establish a newborn screening program within the department to ensure that the testing for congenital disorders and the reporting of hearing test results required by this section are conducted in an effective and efficient manner.

The newborn screening program shall include all congenital disorders that are included on the recommended uniform screening panel adopted by the secretary of the United States department of health and human services for both core and secondary conditions.

Beginning January 1, 2022, CONGENITAL disorders that are added to the core and secondary conditions list of the recommended uniform screening panel shall be added to this state's newborn screening panel within two years after their addition to the recommended uniform screening panel.

The newborn screening program shall include an education program for the general public, the medical community, parents and professional groups.

The director shall designate the state laboratory as the only testing facility for the program, except that the director may designate other laboratory testing facilities for conditions or tests added to the newborn screening program on or after July 24, 2014.

If the director designates another laboratory testing facility for any condition or test, the director shall require the facility to follow all of the privacy and sample destruction time frames that are required of the state laboratory.

- 1 - S.B.

1020 E.

IN ADDITION TO THE CONGENITAL DISORDERS ADDED TO THIS STATE'S NEWBORN SCREENING PANEL PURSUANT TO SUBSECTION D OF THIS SECTION, THE DEPARTMENT SHALL ADD DUCHENNE MUSCULAR DYSTROPHY TO THIS STATE'S NEWBORN SCREENING PANEL.

E.

F.

The newborn screening program shall establish and maintain a central database of newborns and infants who are tested for hearing loss and congenital disorders that includes information required in rule.

Test results are confidential subject to the disclosure provisions of sections 12-2801 and 12-2802.

F.

G.

If tests conducted pursuant to this section indicate that a newborn or infant may have a hearing loss or a congenital disorder, the screening program shall provide follow-up services to encourage the child's family to access evaluation services, specialty care and early intervention services.

G.

H.

The director shall establish a committee to provide recommendations and advice to the department on at least an annual basis regarding newborn screening best practices and emerging trends.