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REFERENCE TITLE: newborn screenings; Krabbe disease |
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State of Arizona House of Representatives Fifty-first Legislature Second Regular Session 2014
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HB 2388 |
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Introduced by Representatives Ugenti: Steele
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AN ACT
Amending section 36‑694, Arizona Revised Statutes; relating to newborn screening.
(TEXT OF BILL BEGINS ON NEXT PAGE)
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 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. 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 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. Notwithstanding subsection G of this section, the newborn screening program shall include a test for Krabbe disease.
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 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 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. The director may establish by rule a fee that the department may collect for operation of 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 dollars.
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.