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House of Representatives
Session of 2013 - 2014 Regular Session


Posted: April 3, 2013 01:26 PM
From: Representative Gene DiGirolamo
To: All House members
Subject: The Newborn Child Screening Program Account Legislation
In the near future, I plan to introduce legislation that will establish the Newborn Child Screening Program Account in the State Treasury that will provide funds for the Newborn Child Screening Program in the Department of Health.

The Newborn Child Testing Act currently mandates all newborn children to be screened for six genetic and metabolic diseases and recommends screening for an additional twenty-two genetic and metabolic diseases. Test results are reported to the Department of Health. When screening results are abnormal, the Department provides follow up services including case management, confirmatory testing, assessment, diagnosis and referral. The Newborn Child Screening and Follow-up Program is funded through federal and state dollars.

Early detection and treatment of genetic and metabolic diseases often means the difference between severe physical disability, intellectual disability or possible death and the ability to live a normal life. No dollar amount can be placed on the lifelong costs to families and infants with a missed diagnosis. However, the lifelong cost to support an individual with an intellectual disability has been estimated to be $1,014,000 over and above the costs to support an individual with no disability.

As technology improves, more infants can be identified and treated, preventing lifelong disability and possible death. In order to safeguard newborn health and appropriately fund services for infants identified with a genetic or metabolic disease, this legislation establishes the Newborn Child Screening Program Account.

The Department of Health is directed to impose a fee on birthing hospitals for each newborn child screened for heritable diseases, which will be deposited into the Newborn Child Screening Program Account. The fees collected will fund the tracking of screening outcomes, follow up, and referral for treatment for identified infants up to the first year of life and includes support for medical foods for identified children up to 18 years of age and for females 18 and older who are considering pregnancy.

In addition, this legislation provides that diseases and conditions identified by the federal government and recommended by the Department’s New Born Screening and Follow-Up Technical Advisory Board be included in the mandated list of diseases screened.

Pennsylvania, New York, Kansas and the District of Columbia are the only states in the country that do not charge a fee for newborn screening.

With early detection and treatment the long-term effects of these diseases will be less detrimental to the child and family and the financial impact less burdensome.

Introduced as HB1334