Sponsored by:
Assemblyman DAVID P. RIBLE
District 11 (Monmouth)
Assemblyman JASON O'DONNELL
District 31 (Hudson)
Assemblyman HERB CONAWAY, JR.
District 7 (Burlington and Camden)
Assemblyman DANIEL R. BENSON
District 14 (Mercer and Middlesex)
Co-Sponsored by:
Assemblymen A.M.Bucco and Diegnan
SYNOPSIS
“Emma’s Law”; provides for screening newborn infants for lysosomal storage disorders.
CURRENT VERSION OF TEXT
As introduced.
An Act concerning screening for certain disorders in newborn infants, designated as Emma’s Law, and supplementing Title 26 of the Revised Statutes.
Be It Enacted by the Senate and General Assembly of the State of New Jersey:
1. a. All infants born in this State shall be tested for the lysosomal storage disorders known as Krabbe, Pompe, Gaucher, Fabry, and Niemann-Pick diseases within six months following the occurrence of all of the following:
(1) the registration with the federal Food and Drug Administration of the necessary reagents;
(2) the availability of the necessary reagents from the federal Centers for Disease Control and Prevention;
(3) the availability of quality assurance testing methodology for these processes; and
(4) the acquisition by the Department of Health and Senior Services of the equipment necessary to implement the expanded screening tests.
b. The Department of Health and Senior Services may charge a reasonable fee for the tests performed pursuant to this section. The amount of the fee and the procedures for collecting the fee shall be determined by the Commissioner of Health and Senior Services.
2. This act shall take effect immediately.
STATEMENT
This bill requires that infants born in the State be screened for the following lysosomal storage disorders: Krabbe, Pompe, Gaucher, Fabry, and Niemann-Pick diseases, within six months after the following occur:
· registration with the FDA of the necessary reagents (substances that would enable detection of the disorders);
· availability of the necessary reagents from the federal Centers for Disease Control and Prevention;
· availability of quality assurance testing methodology; and
· acquisition by the Department of Health and Senior Services (DHSS) of the equipment necessary to implement the screening tests.
The bill also authorizes DHSS to charge a reasonable fee for the testing.
This bill is based on Illinois law. Lysosomal storage disorders are rare, inherited disorders that primarily affect children. They cause a range of devastating symptoms, which, depending on the disorder, include developmental delays, movement disorders, seizures, dementia, deafness, blindness, enlarged livers or spleens, bones that grow abnormally, and pulmonary and cardiac problems. Research is underway to find reliable cures and treatments for these diseases. To date, it is believed that the success of treatments that are available depends upon how early children receive them, and thus the critical need to detect these disorders as early as possible.
This bill is designated as “Emma’s Law,” after Emma Daniels, who was born in the State in 2009 and diagnosed with Krabbe disease.