(a) The administrative officer or other person in charge of each institution caring for newborn infants shall cause to have administered to every such infant in its care an HIV-related test, as defined in section 19a-581, a test for phenylketonuria and other metabolic diseases, hypothyroidism, galactosemia, sickle cell disease, maple syrup urine disease, homocystinuria, biotinidase deficiency, congenital adrenal hyperplasia, severe combined immunodeficiency disease, adrenoleukodystrophy and such other tests for inborn errors of metabolism as shall be prescribed by the Department of Public Health. The tests shall be administered as soon after birth as is medically appropriate. If the mother has had an HIV-related test pursuant to section 19a-90 or 19a-593, the person responsible for testing under this section may omit an HIV-related test. The Commissioner of Public Health shall (1) administer the newborn screening program, (2) direct persons identified through the screening program to appropriate specialty centers for treatments, consistent with any applicable confidentiality requirements, and (3) set the fees to be charged to institutions to cover all expenses of the comprehensive screening program including testing, tracking and treatment. The fees to be charged pursuant to subdivision (3) of this subsection shall be set at a minimum of ninety-eight dollars. The Commissioner of Public Health shall publish a list of all the abnormal conditions for which the department screens newborns under the newborn screening program, which shall include screening for amino acid disorders, organic acid disorders and fatty acid oxidation disorders, including, but not limited to, long-chain 3-hydroxyacyl CoA dehydrogenase (L-CHAD) and medium-chain acyl-CoA dehydrogenase (MCAD).

(b) In addition to the testing requirements prescribed in subsection (a) of this section, the administrative officer or other person in charge of each institution caring for newborn infants shall cause to have administered to (1) every such infant in its care a screening test for (A) cystic fibrosis, and (B) critical congenital heart disease, and (2) any newborn infant who fails a newborn hearing screening, as described in section 19a-59, a screening test for cytomegalovirus, provided such screening test shall be administered within available appropriations on and after January 1, 2016. On and after January 1, 2018, the administrative officer or other person in charge of each institution caring for newborn infants who performs the testing for critical congenital heart disease shall enter the results of such test into the newborn screening system pursuant to section 19a-53. Such screening tests shall be administered as soon after birth as is medically appropriate.

(c) The administrative officer or other person in charge of each institution caring for newborn infants shall report any case of cytomegalovirus that is confirmed as a result of a screening test administered pursuant to subdivision (2) of subsection (b) of this section to the Department of Public Health in a form and manner prescribed by the Commissioner of Public Health.

(d) The provisions of this section shall not apply to any infant whose parents object to the test or treatment as being in conflict with their religious tenets and practice. The commissioner shall adopt regulations, in accordance with the provisions of chapter 54, to implement the provisions of this section.

(February, 1965, P.A. 108, S. 1, 2; P.A. 77-614, S. 323, 610; P.A. 78-193, S. 1, 2, 4; P.A. 92-227, S. 1, 2; P.A. 93-381, S. 9, 39; P.A. 95-257, S. 12, 21, 58; June 18 Sp. Sess. P.A. 97-8, S. 26; June Sp. Sess. P.A. 99-2, S. 30; P.A. 02-113, S. 1; June 30 Sp. Sess. P.A. 03-3, S. 5; P.A. 05-272, S. 43; P.A. 06-196, S. 210; P.A. 09-20, S. 1; June Sp. Sess. P.A. 09-3, S. 167; P.A. 11-48, S. 38; P.A. 12-13, S. 1; P.A. 13-242, S. 1; P.A. 15-10, S. 1; 15-242, S. 49; June Sp. Sess. P.A. 15-5, S. 346, 506; P.A. 16-66, S. 22; P.A. 17-146, S. 14.)

History: P.A. 77-614 replaced department of health with department of health services, effective January 1, 1979; P.A. 78-193 included tests for hypothyroidism and galactosemia and transferred regulation power from department to commissioner; Sec. 19-21b transferred to Sec. 19a-55 in 1983; P.A. 92-227 amended Subsec. (a) to add sickle cell disease, maple syrup urine disease, homocystinuria and biotinidase deficiency to list of diseases for infant testing and to detail responsibilities of the commissioner in administering the program; P.A. 93-381 replaced department of health services with department of public health and addiction services, effective July 1, 1993; P.A. 95-257 replaced Commissioner and Department of Public Health and Addiction Services with Commissioner and Department of Public Health, effective July 1, 1995; June 18 Sp. Sess. P.A. 97-8 added congenital adrenal hyperplasia to the list of diseases tested for; June Sp. Sess. P.A. 99-2 amended Subsec. (a) by replacing “infants twenty-eight days or less of age” with “newborn infants”, adding HIV-related test, adding provision that tests be administered as soon after birth as is medically appropriate and that test may be omitted if done under other statutes, and adding “consistent with any applicable confidentiality requirements” in Subdiv. (2); P.A. 02-113 amended Subsec. (a) to add requirement for testing of “other metabolic diseases”, to add a minimum fee requirement of $28, and to add requirement that on or before January 1, 2003, the regulations shall include testing for amino acid disorders, organic acid disorders and fatty acid oxidation disorders; June 30 Sp. Sess. P.A. 03-3 amended Subsec. (a) by changing date for regulations requiring testing for certain disorders from January 1, 2003, to January 1, 2004, effective August 20, 2003; P.A. 05-272 amended Subsec. (a) by removing requirement that newborn screening regulations specify abnormal conditions to be tested for and manner of recording and reporting results and, instead, requiring Commissioner of Public Health to publish list of all abnormal conditions for which department screens newborns under newborn screening program, effective July 13, 2005; P.A. 06-196 made a technical change in Subsec. (a), effective June 7, 2006; P.A. 09-20 added new Subsec. (b) requiring that newborn infants be administered screening test for cystic fibrosis and redesignated existing Subsec. (b) as Subsec. (c); June Sp. Sess. P.A. 09-3 amended Subsec. (a) to increase fee from $28 to $56; P.A. 11-48 repositioned provision re adoption of regulations from Subsec. (a) to Subsec. (c) and amended Subsec. (b) by requiring screening test for severe combined immunodeficiency disease and by making a technical change; P.A. 12-13 amended Subsec. (b) by designating existing provisions re screening tests for cystic fibrosis and severe combined immunodeficiency disease as Subdivs. (1) and (2) and adding Subdiv. (3) re screening test for critical congenital heart disease; P.A. 13-242 added new Subsec. (c) re test for adrenoleukodystrophy and redesignated existing Subsec. (c) as Subsec. (d); P.A. 15-10 amended Subsec. (b) by designating existing provisions re screening tests to be administered as Subdiv. (1), redesignating existing Subdivs. (1) to (3) as Subparas. (A) to (C) and adding new Subdiv. (2) re screening test for infant who fails a hearing screening, added new Subsec. (d) re reporting cases of cytomegalovirus and redesignated existing Subsec. (d) as Subsec. (e), effective July 1, 2015; P.A. 15-242 amended Subsec. (d) by making a technical change, effective June 30, 2015; June Sp. Sess. P.A. 15-5 amended Subsec. (a) to replace “fifty-six” with “ninety-eight” re minimum fees, effective July 1, 2015, and deleted former Subsec. (c) re development and validation of reliable methodology for screening for adrenoleukodystrophy and added new Subsec. (c) re agreement with New York State Department of Health to screen for adrenoleukodystrophy, effective October 1, 2015; P.A. 16-66 amended Subsec. (a) to add reference to severe combined immunodeficiency disease and adrenoleukodystrophy, amended Subsec. (b)(1) to delete former Subpara. (B) re severe combined immunodeficiency disease and redesignate existing Subpara. (C) re critical congenital heart disease as Subpara. (B), deleted former Subsec. (c) re screening test for adrenoleukodystrophy and redesignated existing Subsecs. (d) and (e) as Subsecs. (c) and (d); P.A. 17-146 amended Subsec. (b) by adding provision re entering results of testing for critical congenital heart disease into newborn screening system.