PRINTER'S NO. 1278

THE GENERAL ASSEMBLY OF PENNSYLVANIA

HOUSE BILL

No.

1081

Session of

2017

INTRODUCED BY CRUZ, DiGIROLAMO, YOUNGBLOOD, MURT, KINSEY,

V. BROWN, BULLOCK, FITZGERALD, ROZZI, DRISCOLL AND

SCHLOSSBERG, APRIL 7, 2017

certain cases," further providing for Newborn Child Screening

and Follow-up Program; and providing for Newborn Child

Screening Program Account, for newborn child screening fee

and for mandated screening and follow-up.

The General Assembly of the Commonwealth of Pennsylvania

hereby enacts as follows:

Section 1. Section 3 of the act of September 9, 1965

(P.L.497, No.251), known as the Newborn Child Testing Act, is

amended to read:

Section 3. Newborn Child Screening and Follow-up Program.--

(1) The] the screening tests of newborn children for the

following diseases:

[(i)] (1) Phenylketonuria (PKU).

[(ii)] (2) Maple syrup urine disease (MSUD).

[(iii)] (3) Sickle-cell disease (hemoglobinopathies).

[(iv)] (4) Galactosemia.

[(v)] (5) Congenital adrenal hyperplasia (CAH).

[(vi)] (6) Primary congenital hypothyroidism.

[(vii) Certain Lysosomal storage disorders (LSDs),

including:

(2) Follow-up services relating to case management,

referrals, confirmatory testing, assessment and diagnosis of

newborn children with abnormal, inconclusive or unacceptable

screening test results for the following diseases:

(i) Phenylketonuria (PKU).

(ii) Maple syrup urine disease (MSUD).

(iii) Sickle-cell disease (hemoglobinopathies).

(iv) Isovaleric acidemia/Isovalery-CoA dehydrogenase

deficiency (IVA).

(v) Glutaric acidemia Type I/Glutaryl-CoA dehydrogenase

(ix) Methylmalonic acidemia (Cbl A,B).

(x) 3-Methylcrontonyl-CoA carboxylase deficiency (3MCC).

(xi) Propionic acidemia/Propionyl-CoA carboxylase deficiency

(PROP).

(xii) Beta-ketothiolase deficiency (BKT).

(xiii) Medium chain acyl-CoA dehydrogenase deficiency

(MCAD).

(xiv) Very long-chain acyl-CoA dehydrogenase deficiency

(VLCAD).

(xv) Long-chain L-3-OH acyl-CoA dehydrogenase deficiency

(xxi) Citrullinemia (CIT).

(xxii) Hb S/Beta-thalassemia (Hb S/Th).

(xxiii) Hb S/C disease (Hb S/C).

(xxiv) Congenital hypothyroidism (HYPOTH).

(xxv) Biotinidase deficiency (BIOT).

(xxvi) Congenital adrenal hyperplasia (CAH).

(xxvii) Galactosemia (GALT).

(xxviii) Cystic fibrosis (CF).

(b.1) All laboratories performing the screening tests for

newborn children shall report the results to the department for

(10) Adrenoleukodystrophy (ALD).

(11) Isovaleric acidemia/Isovalery-CoA dehydrogenase

deficiency (IVA).

(12) Glutaric acidemia Type I/Glutaryl-CoA dehydrogenase

deficiency Type I (GA I).

(13) 3-Hydroxy 3-methylglutaryl-CoA lyase deficiency (HMG).

(14) Multiple carboxylase deficiency (MCD).

(15) Methylmalonic acidemia (mutase deficiency) (MUT).

(16) Methylmalonic acidemia (Cbl A, B).

(17) 3-Methylcrontonyl-CoA carboxylase deficiency (3MCC).

(VLCAD).

(22) Long-chain L-3-OH acyl-CoA dehydrogenase deficiency

(LCHAD).

(23) Trifunctional protein deficiency (TFP).

(24) Carnitine uptake defect (CUD).

(25) Homocystinuria (HCY).

(26) Tyrosinemia type I (TYR I).

(27) Argininosuccinic acidemia (ASA).

(28) Citrullinemia (CIT).

(29) Hb S/Beta-thalassemia (Hb S/Th).

(34) Severe combined immunodeficiency disease (SCID).

(c) No screening test shall be performed if a parent or

guardian dissents on the ground that the test conflicts with a

religious belief or practice.

(d) The department, in consultation with [the approval of]

the Newborn Screening and Follow-up Technical Advisory

Committee, shall establish, by periodic publication in the

Pennsylvania Bulletin, [changes] additions to the [lists] list

under subsection [(a)(1) and (2)] (a) of those diseases for

which newborn children shall be screened and laboratory

reported to the department. The department shall establish, by

periodic publication in the Pennsylvania Bulletin, the method

for reporting test results to the department.

(f) Test results for genetic diseases listed in this section

and any diseases subsequently added by the department under

subsection (d) shall be subject to the confidentiality

provisions of the "Disease Prevention and Control Law of 1955."

Section 2. The act is amended by adding sections to read:

Section 3.1. Newborn Child Screening Program Account.--(a)

There is established a special restricted account within the

Account.

(b) The fees deposited in the Newborn Child Screening

Program Account are appropriated, upon approval of the Governor,

to the department to be used for the screening of newborns,

tracking screening outcomes, follow-up services and referrals

for treatment for up to the first year of life as described in

section 3.

(c) All earnings received from the investment or deposit of

the money in the Newborn Child Screening Program Account shall

be paid into the account for the purposes authorized under this

safeguard newborn health and appropriately fund the screening of

newborns, tracking of screening outcomes, follow-up services and

referrals for treatment, the department shall impose a fee on

birthing facilities for each newborn child screened.

(b) The fee shall be deposited in the Newborn Child

Screening Program Account established under section 3.1.

(c) The amount of the fee shall be determined by the

department and shall not exceed an amount sufficient to cover

the administrative, laboratory and follow-up costs associated

with the performance of screening tests.

facility licensed by the department that provides birthing and

newborn care services.

Section 3.3. Mandated Screening and Follow-up.--Conditions

mandated for screenings and follow-up services shall include, at

a minimum, newborn conditions recommended by the Newborn

Screening and Follow-up Technical Advisory Board of the

department, after review and consideration of the Recommended

Uniform Screening Panel from the United States Department of

Health and Human Services.

Section 3. This act shall take effect in 180 days.