Fine Print: Emma’s Law

Andrew Kitchenman | March 21, 2013 | Health Care
Legislature asked to approve $1.6M to implement screening of newborns for certain genetic disorders

What it is: A law, S-1999, signed by Gov. Chris Christie in January 2012, requiring that newborns be screened for a series of genetic disorders that attack the nervous systems of infants. The law didn’t include funding to implement testing.

Its goal: To allow babies to be treated as quickly as possible. Early treatment can reduce the negative consequences of the diseases, in which nerve cell insulation is underdeveloped, affecting the child’s mental and physical development. Early cord blood and bone marrow transplants, as well as physical therapy, can benefit the children. There is no effective treatment once the symptoms have started to appear, and the diseases are fatal.

Who Emma was: Emma Daniels was an infant born with Krabbe disease in 2009. While she grew normally at first, her symptoms began at the age of 2 months, beginning with fussiness and irritability. She was not tested for the disorder until she was 4 months old, at which time it was too late for her to be treated. She died at the age of 2 in March 2012. Her family lobbied for the law’s enactment.

What’s new: Christie proposed $1.6 million to fund the screening tests – which cover Krabbe and five similar diseases, known as lysosomal storage disorders — for the budget year starting on July 1. This will increase the total number of disorders for which newborns are screened from 54 to 60, at a total annual cost to the state of $25 million. Christie mentioned the law during his February 26 budget message to the Legislature and has repeatedly referred to it at health-related public appearances since the speech.

How newborn screenings work: Doctors take a few drops of blood from each newborn’s heel to test for genetic, endocrine and metabolic disorders. According to the federal Centers for Disease Control, early detection, diagnosis and intervention can prevent death or disability and enable children to reach their full potential.

How many babies will be affected: While an estimated 22 of the roughly 110,000 babies born in the state each year have one of 40 lysosomal storage disorders, there are validated screening tests only for the six disorders covered by the bill.

In the future: Funding for Emma’s Law doesn’t figure to be controversial in budget negotiations. The law had bipartisan sponsors in both legislative houses.