Connecticut 2021 Regular Session

Connecticut Senate Bill SB00847 Compare Versions

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7		-	General Assembly Substitute Bill No. 847
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	6	+	General Assembly Raised Bill No. 847
8	7		January Session, 2021
	8	+	LCO No. 2920
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	11	+	Referred to Committee on PUBLIC HEALTH
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	13	+
	14	+	Introduced by:
	15	+	(PH)
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14	20		AN ACT CONCERNING NE WBORN INFANT HEALTH SCREENING.
15	21		Be it enacted by the Senate and House of Representatives in General
16	22		Assembly convened:
17	23
18	24		Section 1. Section 19a-55 of the general statutes is repealed and the 1
19	25		following is substituted in lieu thereof (Effective October 1, 2021): 2
20	26		(a) The administrative officer or other person in charge of each 3
21		-	institution caring for newborn infants, or a nurse-midwife licensed 4
22		-	pursuant to chapter 377 or midwife shall cause to have administered to 5
23		-	every such newborn infant in its care an HIV-related test, as defined in 6
24		-	section 19a-581, a test for [phenylketonuria and other metabolic 7
25		-	diseases] amino acid disorders, including phenylketonuria, organic acid 8
26		-	disorders, fatty acid oxidation disorders, including, but not limited to, 9
27		-	long-chain 3-hydroxyacyl CoA dehydrogenase (L -CHAD) and 10
28		-	medium-chain acyl-CoA dehydrogenase (MCAD), hypothyroidism, 11
29		-	galactosemia, sickle cell disease, maple syrup urine disease, 12
30		-	homocystinuria, biotinidase deficiency, congenital adrenal hyperplasia, 13
31		-	severe combined immunodeficiency disease, adrenoleukodystrophy 14
32		-	and such other tests for [inborn errors of metabolism as shall be] other 15
33		-	metabolic and genetic disorders included on the recommended uniform 16
34		-	screening panel pursuant to 42 USC 300b-10, as amended from time to 17
35		-	time, as prescribed by the [Department] Commissioner of Public Health. 18
36		-	[The tests shall be administered as soon after birth as is medically 19 Substitute Bill No. 847
	27	+	institution caring for newborn infants shall cause to have administered 4
	28	+	to every such newborn infant in its care an HIV-related test, as defined 5
	29	+	in section 19a-581, a test for [phenylketonuria and other metabolic 6
	30	+	diseases] amino acid disorders, including phenylketonuria, organic acid 7
	31	+	disorders, fatty acid oxidation disorders, including, but not limited to, 8
	32	+	long-chain 3-hydroxyacyl CoA dehydrogenase (L -CHAD) and 9
	33	+	medium-chain acyl-CoA dehydrogenase (MCAD), hypothyroidism, 10
	34	+	galactosemia, sickle cell disease, maple syrup urine disease, 11
	35	+	homocystinuria, biotinidase deficiency, congenital adrenal hyperplasia, 12
	36	+	severe combined immunodeficiency disease, adrenoleukodystrophy 13
	37	+	and such other tests for [inborn errors of metabolism] other metabolic 14
	38	+	and genetic disorders included on the recommended uniform screening 15
	39	+	panel pursuant to 42 USC 300b-10, as amended from time to time, as 16 Raised Bill No. 847
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43		-	appropriate.] 20
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	45	+	[shall be] prescribed by the [Department] Commissioner of Public 17
	46	+	Health, [. The tests shall be administered as soon after birth as is 18
	47	+	medically appropriate] and subject to the approval of the Secretary of 19
	48	+	the Office of Policy and Management. 20
44	49		(b) The testing requirements prescribed in subsection (a) of this 21
45	50		section shall be performed using a blood spot specimen. The blood spot 22
46		-	specimen shall be collected ~~not~~ earlier than twenty-four hours after the 23
	51	+	specimen shall be collected no earlier than twenty-four hours after the 23
47	52		birth of the newborn infant and not later than forty-eight hours after the 24
48		-	birth of such infant, unless the institution caring for newborn infants, 25
49		-	nurse-midwife licensed pursuant to chapter 377 or midwife determines 26
50		-	that a situation exists to warrant an early collection of the specimen or if 27
51		-	collection of the specimen is medically contraindicated. Situations that 28
52		-	warrant early collection of the specimen shall include, but shall not be 29
53		-	limited to, the imminent transfusion of blood products, dialysis, early 30
54		-	discharge of the newborn infant from the institution, transfer of the 31
55		-	newborn infant to another institution or imminent death. If the newborn 32
56		-	infant dies before a blood spot specimen can be obtained, the specimen 33
57		-	shall be collected as soon as practicable after death. The institution 34
58		-	licensed to care for newborn infants, nurse-midwife or midwife shall 35
59		-	notify the Department of Public Health when a specimen is not collected 36
60		-	within forty-eight hours after the birth of such infant due to: (1) The 37
61		-	infant's medical fragility, (2) refusal by the parents when newborn infant 38
62		-	screening is in conflict with their religious tenets and practice, (3) the 39
63		-	newborn infant receiving comfort measures only, or (4) any other 40
64		-	reason. Such notification shall be documented in the department's 41
65		-	newborn screening system pursuant to section 19a-53 by the institution 42
66		-	caring for newborn infants, nurse-midwife or midwife, or sent in 43
67		-	writing to the department not later than seventy-two hours after the 44
68		-	birth of the newborn infant. The institution caring for newborn infants, 45
69		-	nurse-midwife or midwife shall send the blood spot specimen to the 46
70		-	state public health laboratory not later than twenty-four hours after the 47
71		-	time of collection. The department may request an additional blood spot 48
72		-	specimen if: (A) There was an early collection of the specimen, (B) the 49
73		-	specimen was collected following a transfusion of blood products, (C) 50
74		-	the specimen is unsatisfactory for testing, or (D) the department 51
75		-	determines that there is an abnormal result. If the mother has had an 52
76		-	HIV-related test pursuant to section 19a-90 or 19a-593, the person 53 Substitute Bill No. 847
	53	+	birth of such infant, unless the institution determines that a situation 25
	54	+	exists to warrant an early collection of the specimen or if collection of 26
	55	+	the specimen is medically contraindicated. Situations that warrant early 27
	56	+	collection of the specimen shall include, but shall not be limited to, the 28
	57	+	imminent transfusion of blood products, dialysis, early discharge of the 29
	58	+	newborn infant, transfer of the newborn infant to another institution, or 30
	59	+	imminent death. If the newborn infant dies before a blood spot specimen 31
	60	+	can be obtained, the specimen shall be collected as soon as practicable 32
	61	+	after death. The institution licensed to care for newborn infants, or a 33
	62	+	licensed nurse-midwife or midwife, shall notify the Department of 34
	63	+	Public Health when a specimen is not collected within forty-eight hours 35
	64	+	of birth due to medical fragility, refusal by the parents when newborn 36
	65	+	infant screening is in conflict with their religious tenets and practice, 37
	66	+	when a newborn infant is receiving comfort measures only, or for any 38
	67	+	other reason. Such notification shall be documented in the department's 39
	68	+	newborn screening system pursuant to section 19a-53 by the institution 40
	69	+	caring for newborn infants, nurse-midwife or midwife, or sent in 41
	70	+	writing to the department not later than seventy-two hours after the 42
	71	+	birth of the newborn infant. The institution caring for newborn infants 43
	72	+	or the nurse-midwife or midwife shall send the blood spot specimen to 44
	73	+	the state public health laboratory not later than twenty-four hours after 45
	74	+	the time of collection. The department may request an additional blood 46
	75	+	spot specimen if there was an early collection of the specimen or if the 47
	76	+	specimen was collected following a transfusion of blood products, if the 48
	77	+	specimen is unsatisfactory for testing or if the department determines 49
	78	+	that there is an abnormal result. If the mother has had an HIV-related 50 Raised Bill No. 847
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83		-	responsible for testing under this section may omit an HIV-related test. 54
84		-	(c) The Commissioner of Public Health shall (1) administer the 55
85		-	newborn screening program, (2) direct persons identified through the 56
86		-	screening program to appropriate specialty centers for treatments, 57
87		-	consistent with any applicable confidentiality requirements, and (3) set 58
88		-	the fees to be charged to institutions to cover all expenses of the 59
89		-	comprehensive screening program including testing, tracking and 60
90		-	treatment. The fees to be charged pursuant to subdivision (3) of this 61
91		-	subsection shall be set at a minimum of ninety-eight dollars. The 62
92		-	Commissioner of Public Health shall publish a list of all the abnormal 63
93		-	conditions for which the department screens newborns under the 64
94		-	newborn screening program. [, which shall include screening for amino 65
95		-	acid disorders, organic acid disorders, fatty acid oxidation disorders, 66
96		-	including, but not limited to, long-chain 3-hydroxyacyl CoA 67
97		-	dehydrogenase (L-CHAD) and medium -chain acyl-CoA 68
98		-	dehydrogenase (MCAD), and, subject to the approval of the Secretary 69
99		-	of the Office of Policy and Management, any other disorder included on 70
100		-	the recommended uniform screening panel pursuant to 42 USC 300b-10, 71
101		-	as amended from time to time.] 72
102		-	[(b)] (d) In addition to the testing requirements prescribed in 73
103		-	subsection (a) of this section, the administrative officer or other person 74
104		-	in charge of each institution caring for newborn infants, or a licensed 75
105		-	nurse-midwife or midwife, shall cause to have administered to (1) every 76
106		-	such infant in its care a screening test for (A) cystic fibrosis, and (B) 77
107		-	critical congenital heart disease, [and (C) on and after January 1, 2020, 78
108		-	spinal muscular atrophy,] and (2) any newborn infant who fails a 79
109		-	newborn hearing screening, as described in section 19a-59, a screening 80
110		-	test for cytomegalovirus, provided such screening test shall be 81
111		-	administered within available appropriations. The administrative 82
112		-	officer or other person in charge of each institution caring for newborn 83
113		-	infants who performs the testing for critical congenital heart disease 84
114		-	shall enter the results of such test into the newborn screening system 85
115		-	pursuant to section 19a-53. The administrative officer or other person in 86 Substitute Bill No. 847
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	84	+	test pursuant to section 19a-90 or 19a-593, the person responsible for 51
	85	+	testing under this section may omit an HIV-related test. 52
	86	+	(c) The Commissioner of Public Health shall (1) administer the 53
	87	+	newborn screening program, (2) direct persons identified through the 54
	88	+	screening program to appropriate specialty centers for treatments, 55
	89	+	consistent with any applicable confidentiality requirements, and (3) set 56
	90	+	the fees to be charged to institutions to cover all expenses of the 57
	91	+	comprehensive screening program including testing, tracking and 58
	92	+	treatment. The fees to be charged pursuant to subdivision (3) of this 59
	93	+	subsection shall be set at a minimum of ninety-eight dollars. The 60
	94	+	Commissioner of Public Health shall publish a list of all the abnormal 61
	95	+	conditions for which the department screens newborns under the 62
	96	+	newborn screening program. [, which shall include screening for amino 63
	97	+	acid disorders, organic acid disorders, fatty acid oxidation disorders, 64
	98	+	including, but not limited to, long-chain 3-hydroxyacyl CoA 65
	99	+	dehydrogenase (L-CHAD) and medium -chain acyl-CoA 66
	100	+	dehydrogenase (MCAD), and, subject to the approval of the Secretary 67
	101	+	of the Office of Policy and Management, any other disorder included on 68
	102	+	the recommended uniform screening panel pursuant to 42 USC 300b-10, 69
	103	+	as amended from time to time.] 70
	104	+	[(b)] (d) In addition to the testing requirements prescribed in 71
	105	+	subsection (a) of this section, the administrative officer or other person 72
	106	+	in charge of each institution caring for newborn infants, or a licensed 73
	107	+	nurse-midwife or midwife, shall cause to have administered to (1) every 74
	108	+	such infant in its care a screening test for (A) cystic fibrosis, and (B) 75
	109	+	critical congenital heart disease, [and (C) on and after January 1, 2020, 76
	110	+	spinal muscular atrophy,] and (2) any newborn infant who fails a 77
	111	+	newborn hearing screening, as described in section 19a-59, a screening 78
	112	+	test for cytomegalovirus, provided such screening test shall be 79
	113	+	administered within available appropriations. The administrative 80
	114	+	officer or other person in charge of each institution caring for newborn 81
	115	+	infants who performs the testing for critical congenital heart disease 82
	116	+	shall enter the results of such test into the newborn screening system 83
	117	+	pursuant to section 19a-53. The administrative officer or other person in 84 Raised Bill No. 847
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122		-	charge of each institution who performs the testing for cystic fibrosis 87
123		-	shall report the number of newborn infants screened and the aggregate 88
124		-	results of such testing on an annual basis to the Department of Public 89
125		-	Health, in a form and manner prescribed by the Commissioner of Public 90
126		-	Health. The provisions of this subsection shall apply irrespective of the 91
127		-	patient's insurance status or source of payment, including self-pay 92
128		-	status. Such screening tests shall be administered as soon after birth as 93
129		-	is medically appropriate. 94
130		-	[(c)] (e) The administrative officer or other person in charge of each 95
131		-	institution caring for newborn infants shall report any case of 96
132		-	cytomegalovirus that is confirmed as a result of a screening test 97
133		-	administered pursuant to subdivision (2) of subsection [(b)] (d) of this 98
134		-	section to the Department of Public Health in a form and manner 99
135		-	prescribed by the Commissioner of Public Health. 100
136		-	[(d)] (f) The provisions of this section shall not apply to any infant 101
137		-	whose parents object to the test or treatment as being in conflict with 102
138		-	their religious tenets and practice. The commissioner shall adopt 103
139		-	regulations, in accordance with the provisions of chapter 54, to 104
140		-	implement the provisions of this section. 105
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	122	+
	123	+	charge of each institution who performs the testing for cystic fibrosis 85
	124	+	shall report the number of newborn infants screened and the aggregate 86
	125	+	results of such testing on an annual basis to the Department of Public 87
	126	+	Health, in a form and manner prescribed by the Commissioner of Public 88
	127	+	Health. The provisions of this section shall apply irrespective of the 89
	128	+	patient's insurance status or source of payment, including self-pay 90
	129	+	status. Such screening tests shall be administered as soon after birth as 91
	130	+	is medically appropriate. 92
	131	+	[(c)] (e) The administrative officer or other person in charge of each 93
	132	+	institution caring for newborn infants shall report any case of 94
	133	+	cytomegalovirus that is confirmed as a result of a screening test 95
	134	+	administered pursuant to subdivision (2) of subsection [(b)] (d) of this 96
	135	+	section to the Department of Public Health in a form and manner 97
	136	+	prescribed by the Commissioner of Public Health. 98
	137	+	[(d)] (f) The provisions of this section shall not apply to any infant 99
	138	+	whose parents object to the test or treatment as being in conflict with 100
	139	+	their religious tenets and practice. The commissioner shall adopt 101
	140	+	regulations, in accordance with the provisions of chapter 54, to 102
	141	+	implement the provisions of this section. 103
141	142		This act shall take effect as follows and shall amend the following
142	143		sections:
143	144
144	145		Section 1 October 1, 2021 19a-55
145	146
146		-	Statement of Legislative Commissioners:
147		-	In Subsec. (a), "nurse-midwife" was changed to "or a nurse-midwife" for
148		-	clarity, in Subsec. (b) provisions were rewritten and subdivision and
149		-	subparagraph indicators were added for clarity, and in Subsec. (d)
150		-	"section" was changed to "subsection" for accuracy.
151		-
152		-	PH Joint Favorable Subst.
	147	+	Statement of Purpose:
	148	+	To require health screening of newborn infants no earlier than twenty-
	149	+	four hours after the birth of the newborn infant and not later than forty-
	150	+	eight hours after the birth of such infant, and to add various metabolic
	151	+	and genetic disorders to the newborn infant screening panel.
	152	+	[Proposed deletions are enclosed in brackets. Proposed additions are indicated by underline, except
	153	+	that when the entire text of a bill or resolution or a section of a bill or resolution is new, it is not
	154	+	underlined.]
153	155