Bill Text: CT HB05132 | 2016 | General Assembly | Introduced

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Bill Title: An Act Concerning Newborn Screening For Pompe Disease.

Spectrum: Committee Bill

Status: (Introduced - Dead) 2016-02-11 - Public Hearing 02/16 [HB05132 Detail]

Download: Connecticut-2016-HB05132-Introduced.html

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General Assembly		Raised Bill No. 5132
February Session, 2016		LCO No. 568
		*00568_______PH_*
Referred to Committee on PUBLIC HEALTH
Introduced by:
(PH)

AN ACT CONCERNING NEWBORN SCREENING FOR POMPE DISEASE.

Be it enacted by the Senate and House of Representatives in General Assembly convened:

Section 1. Section 19a-55 of the 2016 supplement to the general statutes is repealed and the following is substituted in lieu thereof (Effective October 1, 2016):

(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 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, (B) severe combined immunodeficiency disease, [and] (C) critical congenital heart disease, and (D) Pompe 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. Such screening tests shall be administered as soon after birth as is medically appropriate.

(c) On or before October 1, 2015, the Commissioner of Public Health shall execute an agreement with the New York State Department of Health to conduct a screening test of newborns for adrenoleukodystrophy using dried blood spots, as well as the development of a quality assurance testing methodology for such test. The commissioner may accept private grants and donations to defray the cost of purchasing equipment that is necessary to perform the testing described in this subsection.

(d) 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.

(e) 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.

This act shall take effect as follows and shall amend the following sections:
Section 1	October 1, 2016	19a-55

Statement of Purpose:

To require a screening test for Pompe disease.

[Proposed deletions are enclosed in brackets. Proposed additions are indicated by underline, except that when the entire text of a bill or resolution or a section of a bill or resolution is new, it is not underlined.]