SB1680 - 551R

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

Section 1. Section 36-694, Arizona Revised Statutes, is amended to read:

START_STATUTE36-694. 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 make a report of 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 make a report on 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, 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.

E. 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. 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. 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. tests that the committee believes should be included in the newborn screening program. Any recommendation by the committee that a test be added to the newborn screening program shall be accompanied by a cost-benefit analysis.

H. The committee shall include the following members who are appointed by the director and who serve without compensation or reimbursement of expenses at the pleasure of the director:

1. Seven physicians who are licensed pursuant to title 32, chapter 13 or 17 and who represent the medical specialties of endocrinology, pediatrics, neonatology, family practice, otology and obstetrics.

2. A neonatal nurse practitioner who is licensed and certified pursuant to title 32, chapter 15.

3. An audiologist who is licensed pursuant to chapter 17, article 4 of this title.

4. A representative of an agency that provides services under part C of the individuals with disabilities education act.

5. At least one parent of a child with a hearing loss or a congenital disorder.

6. A representative from the insurance industry who is familiar with health care reimbursement issues.

7. The director of the Arizona health care cost containment system administration or the director's designee.

8. A representative of the hospital or health care industry.

I. H. The director may establish by rule a fee that the department may collect for operation of operating the newborn screening program, including contracting for the testing pursuant to this section. The fee for the first specimen and hearing test shall not exceed thirty-six dollars. The director shall present any change to the fee for the newborn screening program to the joint legislative budget committee for review.

I. Not later than sixty days after the department adjusts the newborn screening program fee established pursuant to subsection H of this section:

1. Each health insurer that is subject to title 20 shall update its hospital rates that include newborn screening to reflect the increase.

2. For the Arizona health care cost containment system and contractors acting pursuant to chapter 29, article 1 of this title that are not subject to title 20, the Arizona health care cost containment system shall update its hospital rates that include newborn screening to reflect the increase.

J. For the purposes of this section:

1. "Infant" means a child who is twenty-nine days of age to two years of age.

2. "Newborn" means a child who is not more than twenty-eight days of age. END_STATUTE

Sec. 2. Section 36-694.01, Arizona Revised Statutes, is amended to read:

START_STATUTE36-694.01. Newborn screening program fund; use; nonlapsing

A. The newborn screening program fund is established. The department of health services shall administer the fund. The fund consists of fees collected pursuant to section 36-694 and gifts, grants and donations received by the department.

B. Subject to legislative appropriation, the department shall use fund monies to support the operation of the newborn screening program prescribed under section 36-694 and rules adopted under that section.

C. Monies in the fund are exempt from the provisions of section 35-190 relating to lapsing of appropriations. END_STATUTE

Sec. 3. Department of health services; newborn screening program; implementation of recommended uniform screening panel

Notwithstanding section 36-694, subsection D, Arizona Revised Statutes, as amended by this act, the department of health services shall add spinal muscular atrophy and x-linked adrenoleukodystrophy to this state's newborn screening panel by December 31, 2021 and shall add all remaining core and secondary conditions that are included on the recommended uniform screening panel adopted by the secretary of the United States department of health and human services as of December 31, 2021 to this state's newborn screening panel by December 31, 2023.

Sec. 4. Legislative intent

The legislature intends that the newborn screening program fee established by the director of the department of health services pursuant to section 36-694, Arizona Revised Statutes, as amended by this act, for operating the newborn screening program, including contracting for testing, not exceed the direct cost of the tests and the direct costs of operating the program, excluding any gifts, grants or donations or state or federal funding received by the department.