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Office of Newborn Screening
About Us – Our History
Screening for phenylketonuria (PKU) only began in Arizona in the late 60s and early 70s. Samples were sent to the State Laboratory (ASL) or were tested in hospital labs.
In 1979 a three-year federal grant from the Office of Maternal and Child Health was awarded to the Colorado State Laboratory to establish a regional newborn screening laboratory. Arizona, along with Wyoming and New Mexico began sending samples to the regional lab. Testing for six disorders was paid for by the grant. The disorders were: phenylketonuria (PKU), congenital hypothyroidism (CH), homocystinuria (HCY), maple syrup urine disease (MSUD), hemoglobin diseases and galactosemia (GALT).
In 1981 Colorado began charging for testing and Arizona continued to send samples to the Colorado lab. In 1989 a test for biotinidase deficiency was added to the panel of tests.
In 1993 legislation was passed establishing a Office of Newborn Screening in Arizona funded by fees collected for screening. On November 1, 1994 the Arizona State Lab began screening for the seven disorders on the Colorado panel and also providing follow-up for abnormal results. A second screen was encouraged but not mandated.
In 2001 legislation was passed that increased the screening fees and added congenital adrenal hyperplasia (CAH) to the newborn screening panel. Screening for CAH began in February, 2002. Second screens were now required for all babies.
In 2005 legislation again was passed that increased the screening fees and allowed the expansion of the panel to include the 29 disorders in the Uniform Screening Panel recommended by the federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC).
Between July and September, 2006, newborn screening for 20 disorders (fatty acid oxidation disorders, aminoacidopathies, and organic acidemias) was started using tandem mass spectrometry (MS/MS) and accompanied the testing by other methods of seven other disorders already on the panel. Follow-up for hearing loss began as well.
In October, 2007, testing for cystic fibrosis began and Arizona was now screening and doing follow-up for the complete Uniform Screening Panel.
Newborn Hearing Screening in Arizona began with the Never Too Young (NTY) program in 1985. NTY supported screening children with risk factors for hearing loss. By 1993 it was recognized that half of the babies born with hearing loss had no risk factors and the national move towards universal newborn hearing screening began. New technology made if faster and easier to screen all babies and new research was showing that age of identification of hearing loss was a significant factor in speech and language abilities for children with hearing loss. The NTY evolved into the Arizona Early Hearing Detection and Intervention program (AzEHDI). By 2000 all birthing hospitals in Arizona were screening for hearing loss. In 2005 the current law was passed creating the follow-up program. The goals of the program within the Department of Health Services were to:
- Include parents and professionals on an advisory panel
- Educate parents, health care professionals and the public about early hearing detection and intervention
- Mandate reporting of screening and diagnostic testing
- Institute a centralized system of tracking and follow up to support parents in connecting with screening, diagnostic services and early intervention
Today 98% of all babies born in Arizona are screened for hearing loss by one month of age and 97% of babies are screened nationally. The average age of identification of hearing loss was two years of age. Now, with the goals of AzEHDI in place, the average is less than six months of age. New generations of children who are Deaf and Hard of Hearing have a greater opportunity to meet their full potential.