HB1174: Newborn screening; screening for Pompe disease, etc.


VIRGINIA ACTS OF ASSEMBLY -- CHAPTER
An Act to require the Board of Health to amend regulations governing newborn screening to include certain diseases.
[H 1174]
Approved

 

Be it enacted by the General Assembly of Virginia:

1. § 1. That the Board of Health shall amend regulations governing newborn screening to include screening for Pompe disease and mucopolysaccharidosis type 1 (MPS-1).


HOUSE BILL NO. 1174
AMENDMENT IN THE NATURE OF A SUBSTITUTE
(Proposed by the Senate Committee on Education and Health
on February 15, 2018)
(Patron Prior to Substitute--Delegate Pillion)
A BILL to require the Board of Health to amend regulations governing newborn screening to include certain diseases.

Be it enacted by the General Assembly of Virginia:

1. § 1. That the Board of Health shall amend regulations governing newborn screening to include screening for Pompe disease and mucopolysaccharidosis type 1 (MPS-1).

2. That the provisions of this act shall not become effective unless an appropriation effectuating the purposes of this act is included in a general appropriation act passed in 2018 by the General Assembly that becomes law.


HOUSE BILL NO. 1174
AMENDMENT IN THE NATURE OF A SUBSTITUTE
(Proposed by the House Committee on Health, Welfare and Institutions)
(Patron Prior to Substitute--Delegate Pillion)
House Amendments in [ ] -- February 9, 2018
A BILL to require the Board of Health to [ amend consider amending ] regulations governing newborn screening to include certain diseases.

Be it enacted by the General Assembly of Virginia:

1. § 1. That the Board of Health shall consider amending regulations governing newborn screening to include screening for Pompe disease and mucopolysaccharidosis type 1 (MPS-1).


HOUSE BILL NO. 1174
AMENDMENT IN THE NATURE OF A SUBSTITUTE
(Proposed by the House Committee on Health, Welfare and Institutions
on February 6, 2018)
(Patron Prior to Substitute--Delegate Pillion)
A BILL to require the Board of Health to amend regulations governing newborn screening to include certain diseases.

Be it enacted by the General Assembly of Virginia:

1. § 1. That the Board of Health shall consider amending regulations governing newborn screening to include screening for Pompe disease and mucopolysaccharidosis type 1 (MPS-1).

HOUSE BILL NO. 1174

Offered January 10, 2018
Prefiled January 10, 2018
A BILL to amend and reenact §§ 32.1-65 and 32.1-67 of the Code of Virginia and to repeal § 32.1-65.1 of the Code of Virginia, relating to newborn screening; lysosomal storage disorders.
Patron-- Pillion

Committee Referral Pending

Be it enacted by the General Assembly of Virginia:

1. That §§ 32.1-65 and 32.1-67 of the Code of Virginia are amended and reenacted as follows:

§ 32.1-65. Certain newborn screening required; exemption.

A. In order to prevent intellectual disability and permanent disability or death, every infant who is born in the Commonwealth shall be subjected to screening tests for various disorders consistent with, but not necessarily identical to, the uniform condition panel recommended by the U.S. Secretary of Health and Human Services and the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children; however, such screening shall include screening for Pompe disease, mucopolysaccharidosis type 1 (MPS-1), and other lysosomal storage disorders for which a screening test approved by the U.S. Food and Drug Administration exists. Screening tests required pursuant to this subsection shall be performed by the Division of Consolidated Laboratory Services or any other laboratory the Department of Health has contracted with to provide this service.

B. In addition to the screening tests required pursuant to subsection A, every infant born in a hospital in the Commonwealth that has a newborn nursery shall be screened for critical congenital heart defect, using pulse oximetry or other Board-approved screening test that is based on standards set forth by the American Academy of Pediatrics. Such screening shall be performed when the infant is at least 24 hours old but no more than 48 hours old or, in cases in which the infant is discharged from the hospital prior to reaching 24 hours of age, prior to discharging the infant.

C. Any infant whose parent or guardian objects thereto to the performance of testing required pursuant to this section on the grounds that such tests conflict with his religious practices or tenets shall not be required to receive such screening tests.

D. The physician or, certified nurse midwife, or other health care provider in charge of the infant's care after delivery shall cause such the tests required pursuant to this section to be performed. The screening tests shall be performed by the Division of Consolidated Laboratory Services or any other laboratory the Department of Health has contracted with to provide this service.

E. The program for screening infants for sickle cell diseases shall be conducted in addition to the programs provided for in Article 8 (§ 32.1-68 et seq.).

§ 32.1-67. Duty of Board for follow-up and referral protocols; regulations.

Infants identified with any condition for which newborn screening is conducted pursuant to § 32.1-65 or 32.1-65.1 shall be eligible for the services of the Children with Special Health Care Needs Program administered by the Department of Health. The Board of Health shall promulgate such regulations as may be necessary to implement Newborn Screening Services and the Children with Special Health Care Needs Program. The Board's regulations shall include, but not be limited to, a list of newborn screening tests conducted pursuant to §§ 32.1-65 and 32.1-65.1, notification processes conducted pursuant to § 32.1-66, follow-up procedures, appropriate referral processes, and services available for infants and children who have a heritable disorder or genetic disease identified through Newborn Screening Services.

2. That § 32.1-65.1 of the Code of Virginia is repealed.