| 19 | | - | Section 1. Section 19a-55 of the general statutes is repealed and the 1 |
|---|
| 20 | | - | following is substituted in lieu thereof (Effective October 1, 2023): 2 |
|---|
| 21 | | - | (a) There is established a newborn screening program. The 3 |
|---|
| 22 | | - | Commissioner of Public Health shall (1) administer the newborn 4 |
|---|
| 23 | | - | screening program, (2) direct persons identified through the screening 5 |
|---|
| 24 | | - | program to appropriate specialty centers for treatments, consistent 6 |
|---|
| 25 | | - | with any applicable confidentiality requirements, and (3) set the fees to 7 |
|---|
| 26 | | - | be charged to institutions to cover all expenses of the comprehensive 8 |
|---|
| 27 | | - | screening program including testing, tracking and treatment, subject to 9 |
|---|
| 28 | | - | the approval of the Secretary of the Office of Policy and Management. 10 |
|---|
| 29 | | - | The fees to be charged pursuant to subdivision (3) of this subsection 11 |
|---|
| 30 | | - | shall be set at a minimum of ninety-eight dollars. 12 |
|---|
| 31 | | - | (b) The administrative officer or other person in charge of each 13 |
|---|
| 32 | | - | institution caring for newborn infants, a nurse-midwife licensed 14 |
|---|
| 33 | | - | pursuant to chapter 377 or a midwife shall cause to have administered 15 |
|---|
| 34 | | - | to every such newborn infant in his or her care a blood spot specimen 16 |
|---|
| 35 | | - | and an HIV-related test, as defined in section 19a-581, except that the 17 |
|---|
| 36 | | - | person responsible for testing may omit such test if the mother has had 18 Substitute Bill No. 6821 |
|---|
| 37 | | - | |
|---|
| 38 | | - | |
|---|
| 39 | | - | LCO {\\PRDFS1\HCOUSERS\BARRYJN\WS\2023HB-06821- |
|---|
| 40 | | - | R01-HB.docx } |
|---|
| 41 | | - | 2 of 5 |
|---|
| 42 | | - | |
|---|
| 43 | | - | an HIV-related test pursuant to section 19a-90 or 19a-593. The blood 19 |
|---|
| 44 | | - | spot specimen shall be collected not earlier than twenty-four hours 20 |
|---|
| 45 | | - | after the birth of the newborn infant and not later than forty-eight 21 |
|---|
| 46 | | - | hours after the birth of such infant, unless the institution caring for 22 |
|---|
| 47 | | - | newborn infants, nurse-midwife licensed pursuant to chapter 377 or 23 |
|---|
| 48 | | - | midwife determines that a situation exists to warrant an early 24 |
|---|
| 49 | | - | collection of the specimen or if collection of the specimen is medically 25 |
|---|
| 50 | | - | contraindicated. Situations that warrant early collection of the 26 |
|---|
| 51 | | - | specimen shall include, but not be limited to, the imminent transfusion 27 |
|---|
| 52 | | - | of blood products, dialysis, early discharge of the newborn infant from 28 |
|---|
| 53 | | - | the institution, transfer of the newborn infant to another institution or 29 |
|---|
| 54 | | - | imminent death. If the newborn infant dies before a blood spot 30 |
|---|
| 55 | | - | specimen can be obtained, the specimen shall be collected as soon as 31 |
|---|
| 56 | | - | practicable after death. The institution licensed to care for newborn 32 |
|---|
| 57 | | - | infants, nurse-midwife or midwife shall notify the Department of 33 |
|---|
| 58 | | - | Public Health when a specimen is not collected within forty-eight 34 |
|---|
| 59 | | - | hours after the birth of such infant due to: (1) The infant's medical 35 |
|---|
| 60 | | - | fragility, (2) refusal by the parents when newborn infant screening is in 36 |
|---|
| 61 | | - | conflict with their religious tenets and practice, (3) the newborn infant 37 |
|---|
| 62 | | - | receiving comfort measures only, or (4) any other reason. Such 38 |
|---|
| 63 | | - | notification shall be documented in the department's newborn 39 |
|---|
| 64 | | - | screening system pursuant to section 19a-53 by the institution caring 40 |
|---|
| 65 | | - | for newborn infants, nurse-midwife or midwife or sent in writing to 41 |
|---|
| 66 | | - | the department not later than seventy-two hours after the birth of the 42 |
|---|
| 67 | | - | newborn infant. The institution caring for newborn infants, nurse-43 |
|---|
| 68 | | - | midwife or midwife shall send the blood spot specimen to the state 44 |
|---|
| 69 | | - | public health laboratory not later than twenty-four hours after the time 45 |
|---|
| 70 | | - | of collection. The department may request an additional blood spot 46 |
|---|
| 71 | | - | specimen if: (A) There was an early collection of the specimen, (B) the 47 |
|---|
| 72 | | - | specimen was collected following a transfusion of blood products, (C) 48 |
|---|
| 73 | | - | the specimen is unsatisfactory for testing, or (D) the department 49 |
|---|
| 74 | | - | determines that there is an abnormal result. The state public health 50 |
|---|
| 75 | | - | laboratory shall make and maintain a record of the date and time of its 51 |
|---|
| 76 | | - | receipt of each blood spot specimen and make such record available 52 |
|---|
| 77 | | - | for inspection by the institution caring for newborn infants, nurse-53 Substitute Bill No. 6821 |
|---|
| 78 | | - | |
|---|
| 79 | | - | |
|---|
| 80 | | - | LCO {\\PRDFS1\HCOUSERS\BARRYJN\WS\2023HB-06821- |
|---|
| 81 | | - | R01-HB.docx } |
|---|
| 82 | | - | 3 of 5 |
|---|
| 83 | | - | |
|---|
| 84 | | - | midwife or midwife that sent the blood spot specimen not later than 54 |
|---|
| 85 | | - | forty-eight hours after such institution, nurse-midwife or midwife 55 |
|---|
| 86 | | - | submits a request to inspect such record. 56 |
|---|
| 87 | | - | (c) The Commissioner of Public Health shall publish a list of all the 57 |
|---|
| 88 | | - | abnormal conditions for which the department screens newborns 58 |
|---|
| 89 | | - | under the newborn screening program, which shall include, but need 59 |
|---|
| 90 | | - | not be limited to, testing for amino acid disorders, including 60 |
|---|
| 91 | | - | phenylketonuria, organic acid disorders, fatty acid oxidation disorders, 61 |
|---|
| 92 | | - | including, but not limited to, long-chain 3-hydroxyacyl CoA 62 |
|---|
| 93 | | - | dehydrogenase (L-CHAD) and medium -chain acyl-CoA 63 |
|---|
| 94 | | - | dehydrogenase (MCAD), hypothyroidism, galactosemia, sickle cell 64 |
|---|
| 95 | | - | disease, maple syrup urine disease, homocystinuria, biotinidase 65 |
|---|
| 96 | | - | deficiency, congenital adrenal hyperplasia, severe combined 66 |
|---|
| 97 | | - | immunodeficiency disease, adrenoleukodystrophy, spinal muscular 67 |
|---|
| 98 | | - | atrophy and any other disorder included on the recommended 68 |
|---|
| 99 | | - | uniform screening panel pursuant to 42 USC 300b-10, as amended 69 |
|---|
| 100 | | - | from time to time, and as prescribed by the Commissioner of Public 70 |
|---|
| 101 | | - | Health. 71 |
|---|
| 102 | | - | (d) In addition to the testing requirements prescribed in subsection 72 |
|---|
| 103 | | - | (b) of this section, the administrative officer or other person in charge 73 |
|---|
| 104 | | - | of each institution caring for newborn infants shall cause to have 74 |
|---|
| 105 | | - | administered to [(1)] every such infant in its care a screening test for 75 |
|---|
| 106 | | - | [(A)] (1) cystic fibrosis, [and (B)] (2) critical congenital heart disease, 76 |
|---|
| 107 | | - | [(2) any newborn infant who fails a newborn hearing screening, as 77 |
|---|
| 108 | | - | described in section 19a-59, a screening test for] and (3) 78 |
|---|
| 109 | | - | cytomegalovirus. Such screening tests shall be administered as soon 79 |
|---|
| 110 | | - | after birth as is medically appropriate. 80 |
|---|
| 111 | | - | (e) (1) The clinical laboratory that completes the testing for cystic 81 |
|---|
| 112 | | - | fibrosis [,] shall report the number of newborn infants screened and the 82 |
|---|
| 113 | | - | results of such testing, not less than annually, to the Department of 83 |
|---|
| 114 | | - | Public Health into the newborn screening system pursuant to section 84 |
|---|
| 115 | | - | 19a-53. The administrative officer or other person in charge of each 85 |
|---|
| 116 | | - | institution caring for newborn infants who performs the testing for 86 Substitute Bill No. 6821 |
|---|
| 117 | | - | |
|---|
| 118 | | - | |
|---|
| 119 | | - | LCO {\\PRDFS1\HCOUSERS\BARRYJN\WS\2023HB-06821- |
|---|
| 120 | | - | R01-HB.docx } |
|---|
| 121 | | - | 4 of 5 |
|---|
| 122 | | - | |
|---|
| 123 | | - | critical congenital heart disease shall enter the results of such test into 87 |
|---|
| 124 | | - | the newborn screening system pursuant to section 19a-53. 88 |
|---|
| 125 | | - | (2) The administrative officer or other person in charge of each 89 |
|---|
| 126 | | - | institution caring for newborn infants shall enter any case of 90 |
|---|
| 127 | | - | cytomegalovirus that is confirmed as a result of a screening test 91 |
|---|
| 128 | | - | administered pursuant to subdivision [(2)] (3) of subsection (d) of this 92 |
|---|
| 129 | | - | section to the Department of Public Health into the newborn screening 93 |
|---|
| 130 | | - | system pursuant to section 19a-53. The provisions of this subsection 94 |
|---|
| 131 | | - | shall apply regardless of the patient's insurance status or source of 95 |
|---|
| 132 | | - | payment, including self-pay status. 96 |
|---|
| 133 | | - | (f) The provisions of this section shall not apply to any infant whose 97 |
|---|
| 134 | | - | parents object to the test or treatment as being in conflict with their 98 |
|---|
| 135 | | - | religious tenets and practice. The commissioner shall adopt 99 |
|---|
| 136 | | - | regulations, in accordance with the provisions of chapter 54, to 100 |
|---|
| 137 | | - | implement the provisions of this section. 101 |
|---|
| 138 | | - | Sec. 2. (Effective from passage) Not later than January 1, 2024, the 102 |
|---|
| 139 | | - | Department of Public Health shall disseminate educational materials 103 |
|---|
| 140 | | - | regarding the symptoms, diagnosis and treatment of cytomegalovirus 104 |
|---|
| 141 | | - | to (1) each gynecologist, obstetrician and pediatrician in the state for 105 |
|---|
| 142 | | - | provision by such health care providers to their pregnant and 106 |
|---|
| 143 | | - | postpartum patients, and (2) the Office of Early Childhood to 107 |
|---|
| 144 | | - | disseminate to child care centers, group child care homes and family 108 |
|---|
| 145 | | - | child care homes for provision by such centers and homes to the 109 |
|---|
| 146 | | - | parent or guardian of each newborn receiving care from the center or 110 |
|---|
| 147 | | - | home. 111 |
|---|
| 24 | + | Section 1. (Effective from passage) Not later than January 1, 2024, the 1 |
|---|
| 25 | + | Department of Public Health shall post on its Internet web site 2 |
|---|
| 26 | + | educational materials for health care providers and the general public 3 |
|---|
| 27 | + | regarding the symptoms, diagnosis and treatment of cytomegalovirus. 4 |
|---|