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 Section 19a-55 of the general statutes is repealed and the 1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