*HB1254.1*
January 13, 2022
HOUSE BILL No. 1254
_____
DIGEST OF HB 1254 (Updated January 12, 2022 10:17 am - DI 140)
Citations Affected: IC 16-41.
Synopsis: Newborn screening requirements. Authorizes the perinatal
genetics and genomics advisory committee (committee) to recommend
an additional disorder to the newborn screening examination
requirements in a manner prescribed by the state department of health
(state department). Requires the addition of a disorder in this manner
to be affirmed annually by the committee. Requires the state
department to post any additional disorders to the newborn screening
examination on the state department's Internet web site. Removes the
requirement that the state department adopt rules to establish newborn
screening fees and procedures for disbursement.
Effective: July 1, 2022.
Barrett
January 6, 2022, read first time and referred to Committee on Public Health.
January 13, 2022, reported — Do Pass. Referred to Committee on Ways and Means
pursuant to Rule 127.
HB 1254—LS 7009/DI 104 January 13, 2022
Second Regular Session of the 122nd General Assembly (2022)
PRINTING CODE. Amendments: Whenever an existing statute (or a section of the Indiana
Constitution) is being amended, the text of the existing provision will appear in this style type,
additions will appear in this style type, and deletions will appear in this style type.
Additions: Whenever a new statutory provision is being enacted (or a new constitutional
provision adopted), the text of the new provision will appear in this style type. Also, the
word NEW will appear in that style type in the introductory clause of each SECTION that adds
a new provision to the Indiana Code or the Indiana Constitution.
Conflict reconciliation: Text in a statute in this style type or this style type reconciles conflicts
between statutes enacted by the 2021 Regular Session of the General Assembly.
HOUSE BILL No. 1254
A BILL FOR AN ACT to amend the Indiana Code concerning
health.
Be it enacted by the General Assembly of the State of Indiana:
1 SECTION 1. IC 16-41-17-2, AS AMENDED BY P.L.19-2020,
2 SECTION 1, IS AMENDED TO READ AS FOLLOWS [EFFECTIVE
3 JULY 1, 2022]: Sec. 2. (a) Subject to subsection (d), every infant shall
4 be given examinations at the earliest feasible time for the detection of
5 the following disorders:
6 (1) Phenylketonuria.
7 (2) Hypothyroidism.
8 (3) Hemoglobinopathies, including sickle cell anemia.
9 (4) Galactosemia.
10 (5) Maple Syrup urine disease.
11 (6) Homocystinuria.
12 (7) Inborn errors of metabolism that result in an intellectual
13 disability and that are designated by the state department.
14 (8) Congenital adrenal hyperplasia.
15 (9) Biotinidase deficiency.
16 (10) Disorders detected by tandem mass spectrometry or other
17 technologies with the same or greater detection capabilities as
HB 1254—LS 7009/DI 104 2
1 tandem mass spectrometry, if the state department determines that
2 the technology is available for use by a designated laboratory
3 under section 7 of this chapter.
4 (11) Spinal muscular atrophy.
5 (12) Severe combined immunodeficiency.
6 (13) Beginning July 1, 2020, Krabbe disease.
7 (14) Beginning July 1, 2020, Pompe disease.
8 (15) Beginning July 1, 2020, Hurler syndrome (MPS1).
9 (16) Adrenoleukodystrophy (ALD).
10 (17) Beginning July 1, 2022, and in addition to the disorders
11 listed in subdivisions (1) through (16), only a disorder
12 recommended by a perinatal genetics and genomics advisory
13 committee with expertise in newborn screening and through
14 protocols prescribed by the state department.
15 The state department shall include any disorder added to the
16 required examination by subdivision (17) on a list on the state
17 department's Internet web site. The perinatal genetics and
18 genomics advisory committee shall affirm the addition of any
19 disorder under subdivision (17) to the examination requirement on
20 an annual basis.
21 (b) Subject to subsection (d), every infant shall be given a
22 physiologic hearing screening examination at the earliest feasible time
23 for the detection of hearing impairments.
24 (c) Subject to subsection (d), every infant shall be given a pulse
25 oximetry screening examination in accordance with rules adopted by
26 the state department for the detection of low oxygen levels. Section
27 10(a)(2) of this chapter does not apply to this subsection.
28 (d) If a parent of an infant objects in writing, for reasons pertaining
29 to religious beliefs only, the infant is exempt from the examinations
30 required by this chapter.
31 SECTION 2. IC 16-41-17-10 IS AMENDED TO READ AS
32 FOLLOWS [EFFECTIVE JULY 1, 2022]: Sec. 10. (a) The state
33 department shall develop the following:
34 (1) A registry for tracking and follow-up of all newborns and
35 individuals for screening.
36 (2) A centralized program that provides follow-up, diagnosis,
37 management, and family counseling and support, including
38 equipment, supplies, formula, and other materials, for all infants
39 and individuals identified as having one (1) of the disorders listed
40 in section 2 of this chapter.
41 (3) A laboratory quality assurance program, including proficiency
42 testing.
HB 1254—LS 7009/DI 104 3
1 (4) A statewide network of genetic evaluation and counseling
2 services.
3 (5) A system for using, for epidemiological survey and research
4 purposes, any waste blood specimen generated under this chapter.
5 (b) The program described in subsection (a) shall be funded by
6 collection of a newborn screening fee for each newborn screened by a
7 designated laboratory.
8 (c) The state department shall set the fee and procedures for
9 disbursement. under rules adopted under IC 4-22-2. The fee must be
10 based upon the projected cost of the program. The proposed fee must
11 be approved by the budget agency before the rule is adopted. fee is
12 assessed.
13 (d) The designated laboratory shall assess, collect, and deposit the
14 fees established under subsection (c) in the newborn screening fund
15 established under section 11 of this chapter.
16 (e) The state department shall annually review the newborn
17 screening fee.
18 (f) Waste blood specimens used for the purpose of implementing the
19 system described under subsection (a)(5) may not include the name or
20 other identifying characteristics that would identify the individual
21 submitting the specimen.
HB 1254—LS 7009/DI 104 4
COMMITTEE REPORT
Mr. Speaker: Your Committee on Public Health, to which was
referred House Bill 1254, has had the same under consideration and
begs leave to report the same back to the House with the
recommendation that said bill do pass.
(Reference is to HB 1254 as introduced.)
BARRETT
Committee Vote: Yeas 11, Nays 0
HB 1254—LS 7009/DI 104