Requires the testing of newborns for severe combined immunodeficiency disease

Summary of provisions

Subdivision (a) of Section 2500-a of the Public Health Law, as amended by Chapter 863 of the Laws of 1986, is amended to add severe combined immunodeficiency disease (SCID) to the list of tests to be administered to infants born in the State of New York.

Existing law

Current New York State Law does not mandate the testing of infants for severe combined immunodeficiency disease (SCID).

Justification

New York State's Newborn Screening Program began in 1965. The goal of the program is to help ensure that newborn infants are tested, through a simple blood test, for rare disorders. Early diagnosis and medical treatment has been proven to prevent or lessen the severity of many diseases and conditions. Over the past forty-five (45) years, diseases and conditions have been added to the State's program to keep New York State at the forefront of newborn testing. As of 2010, infants born in the State of New York are tested for more than forty (40) disorders. While rare, these diseases are usually very serious and some even life threatening. For many of these disorders or conditions a lack of early detection and treatment can cause mental retardation, abnormal physical development and a host of other problems.

As scientific techniques for newborn testing continue to advance, it has become possible to test a number of additional disorders. It is incumbent upon the State of New York to add these diseases as testing become available to their newborn screening program. One such disease was recently recommended to be added to all states' newborn screening programs by the Advisory Committee for Heritable Disorders in Newborns and Children, which provides advice and recommendations on universal newborn screening to the Secretary of the U.S. Department of Health and Human Services. On January 21, 2010, the Advisory Committee voted to recommend the addition of Severe Combined Immunodeficiency (SCID) to the uniform newborn screening panel for all 50 states. On May 21, 2010 Kathleen Sebelius, Secretary of Health and Services announced the addition of Severe Combined Immunodeficiency (SCID) to the core panel of genetic disorders as

part of her recommendation to adopt the national Recommended Uniform Screening Panel. SCID is the first nominated condition to be added to the core panel of disorders for all 50 states by this Committee. In light of this information, the State of New York should be acting quickly to add SCID to their newborn screening program.

In addition, the States of Wisconsin and Massachusetts are now testing for severe combined immunodeficiency disease (SCID), commonly referred to as the "Bubble Boy Disease." According to the National Genome Research Institute at the National Institutes of Health, SCID is caused by defects in any of several possible genes which make those affected highly susceptible to life-threatening infections by viruses, bacteria and fungi. The classic symptoms of SCID include an increased susceptibility to a variety of infections, including ear infections (acute otitis media), pneumonia, bronchitis, oral thrush (a type of yeast that multiplies rapidly, creating white, sore areas in the mouth), and diarrhea. Because children with SCID experience multiple infections, they fail to grow and gain weight as expected (i.e., failure to thrive). Children with untreated SCID rarely live past the age of two; therefore, early detection and treatment are crucial.

New parents in New York State should have the benefit of knowing that their infants are being tested for as many diseases as possible at birth and that the State is following all guidelines set forth by the Advisory Committee for Heritable Disorders in Newborns and Children and the U.S. Department of Health and Human Services.

Legislative history

This is a new bill.

Fiscal implications

To be determined.

Effective date

This act shall take effect January 1, 2011; provided, that, effective immediately, the addition, amendment and/or repeal of any rule or regulation necessary for the implementation of this act on its effective date is authorized and directed to be completed on or before such date.