Trenton, NJ 08625-0360
July 13, 2000
TRENTON - The Department of Health and Senior Services and its Newborn Screening Advisory Panel are holding public hearings July 17 and August 14 on the state's program of screening newborns for disorders that can cause severe health problems and even death.
The July 17 hearing will run from 4 to 7 p.m. at the North Brunswick Government and Community Complex - Courtroom, 710 Hermann Rd., North Brunswick. The August hearing will run from 4 p.m. to 7 p.m. at the Burlington County Human Services Facility, Lecture Room B, 795 Woodlane Rd. Westampton, New Jersey.
The department convened the advisory panel to review the state's current newborn screening program. Later this year, the panel will make recommendations to Health and Senior Services Commissioner Christine Grant on the possible expansion of the program to test for additional disorders, and other issues related to carrying out a program of testing and follow-up.
The 19-member panel is made up of physicians, scientists, nurses, consumers and an ethicist.
Currently, all of the more than 113,000 infants born each year in the state are tested for four disorders: phenylketonuria (PKU), the inability to metabolize a certain amino acid; congenital hypothyroidism, the inability to produce enough thyroid hormone; galactosemia, the inability to metabolize the sugar galactose; and sickle cell disease and other blood abnormalities.
Early detection of these disorders is vital so that infants can receive prompt treatment and monitoring to prevent severe health problems. For example, galactosemia can lead to mental retardation and can be fatal if not treated promptly with a special diet.
All infants are tested for these disorders while in the hospital and the blood samples are analyzed in the department's Public Health and Environmental Laboratories. Abnormal tests results are sent to the department's Newborn Screening Follow-up
Program, which contacts the infant's physician and the family. Each year, the department follows up about 1,600 abnormal test results.
Department staff is available 24-hours-a-day to answer questions from concerned parents of infants with an abnormal test result. The department ensures that these infants receive needed confirmatory tests to determine whether the child actually has a disorder or whether the screening test result was a false positive. Children with a disorder are referred to medical specialists and registered with the state's Birth Defects Registry. Children and families can receive special support services through the department's Special Child Health Services program.
The department is undertaking this review of its newborn screening program because of advances in testing and treatment for a number of disorders for which the state currrently does not test.
Anyone interested in testifying is asked to limit remarks to five minutes and to submit two copies of the testimony at the hearing. If you are planning to attend the July hearing, please contact Ms. Susan Agugliaro at (609) 984-0755 between 9 a.m. and 5 p.m. Those planning to attend the August hearing should contact Ms. Agugliaro by August 7.
Those not able to attend either hearing may submit written comments by August 15 to: Ms. Susan Agugliaro; Department of Health and Senior Services; Division of Family Health Services; Special Child, Adult and Early Intervention Services; 50 E. State St., P.O. Box 364, Trenton, NJ 08625-0364. Comments may also be faxed to (609) 292-3580.