One of the initiatives that we’re enthusiastic about during this year’s legislative session is the possibility that Severe Combined Immune Deficiency syndrome could be added to the state’s newborn screening panel. We at AzPHA hope it happens!
Arizona began screening newborns for phenylketonuria (PKU) in the late 60s and early 70s. Samples were sent to the State Laboratory or were tested in hospital labs. In 1979 Arizona began testing for phenylketonuria, congenital hypothyroidism, homocystinuria, maple syrup urine disease, hemoglobin diseases. Galactosemia and biotinidase were added in 1981. In 1993 the Office of Newborn Screening was born and the Arizona State Lab began screening for the seven disorders in late 1994. In the 2000’s we expanded the number of screenings further to include 29 disorders in the Uniform Screening Panel.
The goals of newborn screening are to find babies with certain, rare disorders at birth and help families and the infants get fast treatment to prevent or delay serious medical problems. Babies born with these conditions appear to be normal at birth but without interventions the disorder may have a devastating or lethal effect on the baby’s health and development. The good news is that early screening, detection and treatment often results in normal growth and development. Another goal is to find possible hearing loss before one month of age and link families with appropriate assessment and intervention.
We’re pleased that the Governor has proposed in his budget to add Severe Combined Immune Deficiency (SCID) to the AZ panel- along with an authorization to increase the fee up to $6/test to pay for it. Babies born with Severe Combined Immunodeficiency look normal at birth but they can’t fight infections. They often die before 1 year of age without medical treatment, but if caught at birth, before the onset of infection, a bone marrow transplant can successfully treat the disorder. It’s particularly important to test for SCID in Arizona because the disorder is much more common in certain populations in Arizona: 1/2,000 among Navajo’s and Apache’s and about 1/20,000 among Latinos.
Senate Bill 1368 is the bill that would authorize raising the newborn screening fee by $6/test which would allow the ADHS to add SCID testing to their panel… and AzPHA will be at the hearing this Wednesday at 2 pm urging the Senate panel to recommend passage of the proposal.