2015 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), tyrosinemia type I (TYR I),
and krabbe disease. 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: June 24, 2015
History: Amended 2015 Ky. Acts ch. 6, sec. 1, effective June 24, 2015. -- 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 (6/24/2015). 2015 Ky. Acts ch. 6, sec. 2
provides that the amendments to this statute made in 2015 Ky. Acts ch. 6, sec. 1 may
be cited as the "Anna Claire Taylor Law."
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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