Bill Text: WV HB2798 | 2022 | Regular Session | Comm Sub


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: (Engrossed - Dead) 2022-03-09 - Referred to Finance on 2nd reading [HB2798 Detail]

Download: West_Virginia-2022-HB2798-Comm_Sub.html

WEST virginia legislature

2022 regular session

Committee Substitute

for

House Bill 2798

By Delegates Boggs, Hanshaw (Mr. Speaker), Hornbuckle, Rohrbach, Rowan, Zukoff, Sypolt, Paynter, Walker, J. Kelly and Haynes

[Originating in the Committee on Health and Human Resources; Reported February 15, 2022]

A BILL to amend and reenact §16-22-3 of the Code of West Virginia, 1931 as amended, relating to requiring the Bureau for Public Health to test for mucopolysaccharidosis type 1 (MPS1).

 Be it enacted by the Legislature of West Virginia:

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 §16-22-3(a), 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 the 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 §29A-3-1 et seq. 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.

 

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