Come On New Jersey …. When Are You Going to Start Screening Newborns For ALD?
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This is a picture of my dad and me just before he died almost 13 years ago, from a deadly genetic disease called Adrenoleukodystrophy, or ALD. ALD affects 1 in every 17,000 people, most severely affecting males. If not treated before symptoms develop, boys and men who are affected often lose all cognitive and physical functions and deteriorate into a vegetative state leading to death in two to three years. If ALD is detected before the onset of symptoms, however, it can be successfully treated. Unfortunately, ALD is very often diagnosed too late.
Several years ago, a test was developed whereby babies could be screened for ALD at birth. This screening test has proven extremely effective and has false positive rates of less than 0.1 percent. It costs less than $2.50 to screen a newborn for ALD. This screening test gives affected males the best chance of life.
In 2012, I lobbied the New Jersey legislature to introduce and pass a bill requiring that all infants in New Jersey be screened for ALD at birth (NJ newborns are currently screened for 55 other disorders, many of which are rarer than ALD and which have no treatment). In August 2013, Governor Christie signed this bill into law. N.J. Statute 26:2-111.6 requires all infants born in New Jersey to be tested for ALD within six (6) months of the development of a reliable test; the inclusion of ALD in the Recommended Uniform Screening Panel; and the acquisition of the necessary equipment to implement the screening. ALL of these pre-requisites in the law have occurred, yet New Jersey has still not implemented ALD newborn screening! My mom and I met with the Department of Health’s newborn screening committee back in October 2014 to try to accelerate implementation of the screening, however, just recently the Committee advised us that THEY HAVE NOT EVEN REVIEWED THE ALD NEWBORN SCREENING TEST YET because they are too busy with other things and because the state does not hire any geneticists to assist with newborn screening. This is completely unacceptable! New Jersey needs to follow its own law and implement ALD newborn screening NOW, before the lives of more children are put at risk.
The New Jersey legislature was the first in the nation to introduce and pass an ALD newborn screening bill. Yet New York, Connecticut, California and Minnesota have all already begun (or will soon begin) ALD newborn screening, while New Jersey lags woefully behind. There have been approximately 300,000 infants born in New Jersey since Governor Christie signed the ALD newborn screening bill into law in 2013 – NONE of whom were screened for ALD. According to the statistics, approximately 18 of these infants were born with the defective ALD gene. Tragically, the families of these unidentified infants most likely have no idea that a silent killer is lurking within, and that a cure would be possible if only they would seek treatment in time. These babies, and every baby born in New Jersey should have the same chance at life as newborns in New York, Connecticut, California and Minnesota. New Jersey must act NOW!
Please help save the lives of our New Jersey boys by calling on Governor Chris Christie and the New Jersey Department of Health to implement ALD newborn screening NOW by signing and sharing this petition today!
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