2014 Kentucky Revised Statutes CHAPTER 214 - DISEASES 214.155 Screening and tests for heritable disorders for newborns and infants -- Screening for critical congenital heart disease -- Information provided to parent or guardian -- Application for federal grants -- Section cited as James William Lazzaro and Madison Leigh Heflin Newborn Screening Act.
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214.155 Screening and tests for heritable disorders for newborns and infants
-- Screening for critical congenital heart disease -- Information provided
to parent or guardian -- Application for federal grants -- Section cited as
James William Lazzaro and Madison Leigh Heflin Newborn Screening Act.
(1)
(2)
(3)
(4)
The Cabinet for Health and Family Services shall operate a newborn screening
program for heritable and congenital disorders that includes but is not limited to
procedures for conducting initial newborn screening tests on infants
twenty-eight (28) days or less of age and definitive diagnostic evaluations
provided by a state university-based specialty clinic for infants whose initial
screening tests resulted in a positive test. The secretary of the cabinet shall, by
administrative regulation promulgated pursuant to KRS Chapter 13A:
(a) Prescribe the times and manner of obtaining a specimen and transferring
a specimen for testing;
(b) Prescribe the manner of procedures, testing specimens, and recording
and reporting the results of newborn screening tests; and
(c) Establish and collect fees to support the newborn screening program.
The administrative officer or other person in charge of each institution caring
for infants twenty-eight (28) days or less of age and the person required in
pursuance of the provisions of KRS 213.046 shall register the birth of a child
and cause to have administered to every such infant or child in its or his care
tests for heritable disorders, including but not limited to phenylketonuria (PKU),
sickle cell disease, congenital hypothyroidism, galactosemia, medium-chain
acyl-CoA dehydrogenase deficiency (MCAD), very long-chain acyl-CoA
deficiency (VLCAD), short-chain acyl-CoA dehydrogenase deficiency (SCAD),
maple syrup urine disease (MSUD), congenital adrenal hyperplasia (CAH),
biotinidase disorder, and cystic fibrosis (CF), 3-methylcrotonyl-CoA
carboxylase deficiency (3MCC), 3-OH 3-CH3 glutaric aciduria (HMG),
argininosuccinic acidemia (ASA), beta-ketothiolase deficiency (BKT), carnitine
uptake defect (CUD), citrullinemia (CIT), glutaric acidemia type I (GA I), Hb
S/beta-thalassemia (Hb S/Th), Hb S/C disease (Hb S/C), homocystinuria
(HCY), isovaleric acidemia (IVA), long-chain L-3-OH acyl-CoA dehydrogenase
deficiency (LCAD), methylmalonic acidemia (Cbl A,B), methylmalonic acidemia
mutase deficiency (MUT), multiple carboxylase deficiency (MCD), propionic
acidemia (PA), trifunctional protein deficiency (TFP), and tyrosinemia type I
(TYR I). The listing of tests for heritable disorders to be performed shall include
all conditions consistent with the recommendations of the American College of
Medical Genetics.
The administrative officer or other person in charge of each institution caring
for infants twenty-eight (28) days or less of age and the person required in
pursuance of the provisions of KRS 213.046 shall register the birth of a child
and cause to have administered to every such infant or child in its or his care a
screening for critical congenital heart disease (CCHD) prior to discharge unless
CCHD has been ruled out or diagnosed with prior echocardiogram or prenatal
diagnosis of CCHD.
Each health care provider of newborn care shall provide an infant's parent or
guardian with information about the newborn screening tests required under
subsections (2) and (3) of this section. The institution or health care provider
shall arrange for appropriate and timely follow-ups to the newborn screening
tests, including but not limited to additional diagnoses, evaluation, and
treatment when indicated.
(5) Nothing in this section shall be construed to require the testing of any child
whose parents are members of a nationally recognized and established church
or religious denomination, the teachings of which are opposed to medical tests,
and who object in writing to the testing of his or her child on that ground.
(6) The cabinet shall make available the names and addresses of health care
providers, including but not limited to physicians, nurses, and nutritionists, who
may provide postpartum home visits to any family whose infant or child has
tested positive for a newborn screening test.
(7) A parent or guardian shall be provided information by the institution or health
care provider of newborn care about the availability and costs of screening
tests not specified in subsections (2) and (3) of this section. The parent or
guardian shall be responsible for costs relating to additional screening tests
performed under this subsection, and these costs shall not be included in the
fees established for the cabinet's newborn screening program under
subsection (1) of this section. All positive results of additional screening of
these tests shall be reported to the cabinet by the institution or health care
provider.
(8) (a) For the purposes of this subsection, a qualified laboratory means a
clinical laboratory not operated by the cabinet that is accredited pursuant
to 42 U.S.C. sec. 263a, licensed to perform newborn screening testing in
any state, and reports its screening results using normal pediatric
reference ranges.
(b) The cabinet shall enter into agreements with public or private qualified
laboratories to perform newborn screening tests if the laboratory operated
by the cabinet is unable to screen for a condition specified in subsection
(2) of this section.
(c) The cabinet may enter into agreements with public or private qualified
laboratories to perform testing for conditions not specified in subsection
(2) of this section. Any agreement entered into under this paragraph shall
not preclude an institution or health care provider from conducting
newborn screening tests for conditions not specified in subsections (2)
and (3) of this section by utilizing other public or private qualified
laboratories.
(9) The secretary for health and family services or his or her designee shall apply
for any federal funds or grants available through the Public Health Service Act
and may solicit and accept private funds to expand, improve, or evaluate
programs to provide screening, counseling, testing, or specialty services for
newborns or children at risk for heritable disorders.
(10) This section shall be cited as the James William Lazzaro and Madison Leigh
Heflin Newborn Screening Act.
Effective:January 1, 2014
History: Amended 2013 Ky. Acts ch. 24, sec. 1, effective January 1, 2014. -Amended 2006 Ky. Acts ch. 180, sec. 1, effective July 12, 2006. -- Amended
2005 Ky. Acts ch. 66, sec. 1, effective March 11, 2005; and ch. 99, sec. 450,
effective June 20, 2005. -- Amended 2001 Ky. Acts ch. 31, sec. 1, effective June
21, 2001. -- Amended 2000 Ky. Acts ch. 457, sec. 3, effective July 14, 2000. -Amended 1998 Ky. Acts ch. 426, sec. 397, effective July 15, 1998. -- Amended
1990 Ky. Acts ch. 369, sec. 35, effective July 13, 1990. -- Amended 1988 Ky.
Acts ch. 277, sec. 1, effective July 15, 1988. -- Amended 1986 Ky. Acts ch. 447,
sec. 2, effective April 11, 1986. --Amended 1982 Ky. Acts ch. 39, sec. 1,
effective July 15, 1982. -- Amended 1974 Ky. Acts ch. 74, Art. VI, sec. 107(2). -Created 1966 Ky. Acts ch. 45, sec. 1.
Legislative Research Commission Note (6/20/05). Under 2005 Ky. Acts ch. 184,
sec. 18, changes in the names of agencies and officers that are made in bills
confirming a reorganization of the executive branch are to be codified only to the
extent those changes do not conflict with other 2005 amendments. Accordingly,
an amendment to this section in Acts ch. 66 prevails over a name change made
in Acts ch. 99.
Legislative Research Commission Note (3/11/05). 2005 Ky. Acts chs. 11, 85, 95,
97, 98, 99, 123, and 181 instruct the Reviser of Statutes to correct statutory
references to agencies and officers whose names have been changed in 2005
legislation confirming the reorganization of the executive branch. Such a
correction has been made in this section.
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