S0983B1448A07276 DMS:EJH 09/18/20 #90 A07276
AMENDMENTS TO SENATE BILL NO. 983
Sponsor: SENATOR DiSANTO
Printer's No. 1448
Amend Bill, page 1, lines 6 and 7, by striking out "Newborn
Child Screening" in line 6 and all of line 7
Amend Bill, page 2, lines 7 through 14, by striking out all
of said lines
Amend Bill, page 2, by inserting between lines 24 and 25
"Secretary." The Secretary of Health of the Commonwealth.
* * *
"Unlicensed midwife." The term includes nationally certified
midwives, traditional midwives, Amish, Mennonite or Plain
midwives and other specific cultural or spiritual community-
based midwives not licensed to practice midwifery in this
Commonwealth.
Amend Bill, page 2, line 26, by inserting after "amended"
and the section is amended by adding a subsection
Amend Bill, page 3, line 1, by striking out the bracket
before "with"
Amend Bill, page 3, line 3, by striking out "Committee] in
consultation with the board" and inserting
[Committee] Board
Amend Bill, page 4, lines 29 and 30, by striking out "Globoid
Cell Leukodystrophy (Krabbe).
(viii)"
Amend Bill, page 5, line 1, by striking out "(ix)" and
inserting
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(viii)
Amend Bill, page 5, line 2, by striking out "(x)" and
inserting
(ix)
Amend Bill, page 5, lines 3 through 30; page 6, lines 1
through 3; by striking out all of lines 3 through 30 on page 5,
all of lines 1 and 2 and "(xxxv)" in line 3 on page 6 and
inserting
(x)
Amend Bill, page 6, line 4, by striking out "(Reserved)." and
inserting
A birthing facility, certified-nurse midwife, unlicensed
midwife or health care practitioner shall order the screening
tests of new children for the following diseases:
(i) Isovaleric acidemia/Isovalery-CoA dehydrogenase
deficiency (IVA).
(ii) Glutaric acidemia Type I/Glutaryl-CoA dehydrogenase
deficiency Type I (GA I).
(iii) 3-Hydroxy 3-methylglutaryl-CoA lyase deficiency (HMG).
(iv) Multiple carboxylase deficiency (MCD).
(v) Methylmalonic acidemia (mutase deficiency) (MUT).
(vi) Methylmalonic acidemia (Cbl A, B).
(vii) 3-Methylcrontonyl-CoA carboxylase deficiency (3MCC).
(viii) Propionic acidemia/Propionyl-CoA carboxylase
deficiency (PROP).
(ix) Beta-ketothiolase deficiency (BKT).
(x) Medium chain acyl-CoA dehydrogenase deficiency (MCAD).
(xi) Very long-chain acyl-CoA dehydrogenase deficiency
(VLCAD).
(xii) Long-chain L-3-OH acyl-CoA dehydrogenase deficiency
(LCHAD).
(xiii) Trifunctional protein deficiency (TFP).
(xiv) Carnitine uptake defect (CUD).
(xv) Homocystinuria (HCY).
(xvi) Tyrosinemia type I (TYR I).
(xvii) Argininosuccinic acidemia (ASA).
(xviii) Citrullinemia (CIT).
(xix) Hb S/Beta-thalassemia (Hb S/Th).
(xx) Hb S/C disease (Hb S/C).
(xxi) Biotinidase deficiency (BIOT).
(xxii) Cystic fibrosis (CF).
(xxiii) Severe combined immunodeficiency disease (SCID).
(xxiv) Globoid Cell Leukodystrophy (Krabbe).
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Amend Bill, page 6, line 7, by striking out "Follow-up
services provided" and inserting
The department shall provide follow-up services
Amend Bill, page 6, line 8, by striking out "shall include"
and inserting
relating to
Amend Bill, page 6, line 13, by striking out the bracket
before "with"
Amend Bill, page 6, lines 14 and 15, by striking out
"Committee] in consultation with the board " and inserting
[Committee] Board
Amend Bill, page 6, line 17, by striking out the bracket
before "changes"
Amend Bill, page 6, line 17, by striking out "] additions"
Amend Bill, page 6, line 18, by striking out the bracket
before "lists"
Amend Bill, page 6, line 18, by striking out "] list"
Amend Bill, page 6, line 18, by striking out the bracket
before "and"
Amend Bill, page 6, line 18, by striking out the bracket
after "(2)"
Amend Bill, page 6, line 20, by inserting after "reported."
Prior to making any change, the department and board shall
jointly transmit a notice to the Legislative Reference Bureau
for publication in the Pennsylvania Bulletin that establishes a
public comment period of at least 30 days.
(d.1) The board shall consist of multidisciplinary members
appointed by the secretary. The board shall include at least the
following:
(1) An ethicist.
(2) Three pediatric physicians.
(3) A neonatologist.
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(4) A genetic counselor.
(5) A hematologist.
(6) Two clinical geneticists.
(7) A nurse midwife.
(8) A parent advocate.
(9) A representative recommended by a hospital association.
Amend Bill, page 7, line 1, by striking out "sections" and
inserting
a section
Amend Bill, page 7, lines 2 through 30; page 8, lines 1
through 9; by striking out "Newborn Child Screening Program
Account.--(a)" in line 2, all of lines 3 through 30 on page 7,
all of lines 1 through 8 and "Section 3.3." in line 9 on page 8
Amend Bill, page 8, line 12, by striking out "3(a)(1)" and
inserting
3(a)
Amend Bill, page 8, line 14, by striking out "3(a)(1)" and
inserting
3(a)
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