Bill Text: WV HB2798 | 2021 | Regular Session | Introduced
Bill Title: Relating to requiring the Health Department to mandate mucopolysaccharidosis type 1 (MPS1) test for newborn babies, to be known as Embie’s Law
Spectrum: Slight Partisan Bill (Republican 7-4)
Status: (Introduced - Dead) 2021-03-11 - To House Health and Human Resources [HB2798 Detail]
Download: West_Virginia-2021-HB2798-Introduced.html
WEST virginia legislature
2021 regular session
Introduced
House Bill 2798
By Delegates Boggs, Hanshaw (Mr. Speaker), Hornbuckle, and Rohrbach
[Introduced March 01, 2021; Referred
to the Committee on Senior, Children, and Family Issues then Health and Human Resources]
A BILL to amend and reenact §16-22-3 of the Code of West Virginia, 1931 as amended, relating to requiring the Health Department to mandate mucopolysaccharidosis type 1 (MP1) test for newborn babies, to be known as Embie’s Law.
Be it enacted by the Legislature of West Virginia:
Preamble: This act shall be known as Embie’s law
ARTICLE 22. DETECTION AND CONTROL OF PHENYLKETONURIA, GALACTOSEMIA, HYPOTHYROIDISM, AND CERTAIN OTHER DISEASES IN NEWBORN CHILDREN.
§16-22-3. Tests for diseases specified by the state Public Health Commissioner; reports; assistance to afflicted children; Public Health Commissioner to propose rules.
(a) The hospital or
birthing center in which an infant is born, the parents or legal guardians, the
physician attending a newborn child, or any person attending a newborn child
not under the care of a physician shall require and ensure that each such child
be tested for phenylketonuria, galactosemia, hypothyroidism, sickle cell anemia
and certain other diseases specified by the Bureau for Public Health. The
Bureau for Public Health shall also require testing for congenital adrenal
hyperplasia, cystic fibrosis and biotinidase deficiency. No later than July 1,
2008 The Bureau for Public Health shall also require testing for
isovaleric acidemia, glutaric acidemia type I, 3-Hydroxy-3-methylglutaric
aciduria, multiple carboxylase deficiency, methylmalonic acidemia-mutase
deficiency form, 3-methylcrotonyl-CoA carboxylase deficiency, methylmalonic
acidemia, Cbl A and Cbl B forms, propionic acidemia, beta-ketothiolase
deficiency, medium-chain acyl-CoA dehydrogenase deficiency, very long-chain
acyl-CoA dehydrogenase deficiency, long-chain hydroxyacyl-CoA dehydrogenase deficiency,
trifunctional protein deficiency, carnitine uptake defeat, maple syrup urine
disease, homocystinuria, citrullinemia type I, argininosuccinate acidemia,
tyrosinemia type I, hemoglobin S/Beta-thalassemia, sickle C disease, congenital
adrenal hyperplasia, cystic fibrosis, biotinidase deficiency, mucopolysaccharidosis type I, and hearing deficiency.
(b) A positive result on any test specified in subsection (a) of this section, or a positive result for any other diseases specified by the Bureau for Public Health, shall be promptly reported to the Bureau for Public Health by the director of the laboratory performing such test.
(c) Newborn screenings shall be considered a covered benefit reimbursed to the birthing facilities by the Public Employees Insurance Agency, the state Children's Health Insurance Program, the Medicaid program and all health insurers whose benefit package includes pregnancy coverage and who are licensed under chapter 33 of this code.
(d) The Bureau for Public Health shall propose rules for legislative approval in accordance with article three, chapter twenty-nine of this code. These legislative rules shall include:
(1) A means for the Bureau
for Public Health, in cooperation with other state agencies, and with attending
physicians, to provide medical, dietary and related assistance to children
determined to be afflicted with any disease specified in subsection (a) of this
section and certain other diseases specified by the Bureau for Public Health; and
(2) A means for payment for the screening provided for in this section; and
(3) Anything further considered necessary by the Bureau for Public Health to implement the provisions of this section.
NOTE: The purpose of this bill is to enact Embie’s Law, mandating newborn testing for mucopolysaccharidosis type 1 (MP1), a metabolic disorder, which although not curable, can be treated if diagnosed in young infants.
Strike-throughs indicate language that would be stricken from a heading or the present law, and underscoring indicates new language that would be added.
